tag:blogger.com,1999:blog-42317702311292609172024-03-05T06:42:56.389+00:00My Battle With Trigeminal NeuralgiaTrigeminal Neuralgia (TN) is often considered the most painful disorder known to mankind. TN (a.k.a. tic douloureux) is a disorder of the fifth cranial (trigeminal) nerve that causes episodes of intense, stabbing, electric shock-like pain in the areas of the face where the branches of the nerve are distributed, such as the lips, eyes, nose, scalp, forehead, upper jaw, and lower jaw. This blog chronicles my journey. Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.comBlogger95125tag:blogger.com,1999:blog-4231770231129260917.post-43116205704769327582018-03-22T13:31:00.001+00:002018-03-22T13:31:44.289+00:00Day By Day, Hour By Hour.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimbhIEqAeOnB0Fl1OJ2l7rXNOTirwTjekHViyDXybN8_AocqUKCtyC9ZT2KqUy6c6L7vLPQuCfVXZ60f-BRgjpKFFYaFqcziBQxKgIcoURjGuyCrdP2FE0v4E3RuX9Wxa26OOI4Ved_4I/s1600/10313081_621259757942156_4343946376793371924_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="464" data-original-width="577" height="160" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimbhIEqAeOnB0Fl1OJ2l7rXNOTirwTjekHViyDXybN8_AocqUKCtyC9ZT2KqUy6c6L7vLPQuCfVXZ60f-BRgjpKFFYaFqcziBQxKgIcoURjGuyCrdP2FE0v4E3RuX9Wxa26OOI4Ved_4I/s200/10313081_621259757942156_4343946376793371924_n.jpg" width="200" /></a></div>
<span style="font-family: Verdana, sans-serif;">It has been a long time since my last post. It has been quite difficult to put pen to paper, I haven't been in the right head space. </span><br />
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<span style="font-family: Verdana, sans-serif;">My pain has been absolutely horrendous. It has gotten worse and worse, to the point where it leaves me incapable of doing anything. Trigeminal Neuralgia has taken over my life, despite my valiant efforts to fight this monstrous condition. The pain is so intense now, it's difficult to function. I do have good days, where the pain isn't as bad. It allows me to be normal for a while, paint a smile on my face and pretend that everything is fantastic. That is almost as hard as dealing with TN. I will write more about that soon. </span><br />
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<span style="font-family: Verdana, sans-serif;">What is normal though? Are any of us normal? I don't think so. I have had so much time to reflect on why TN has decided to invade my brain, why I have horrific Migraines and why I have Fibromyalgia. I admit I have spent quite a lot of time feeling sorry for myself. That was foolish, as it serves no purpose. I see things a lot clearer now, it's like a cloud has lifted. We are all unique, we all have our own little quirks and issues. Some happen to be worse than others, and some people seem to have everything laid out in front of them. Why is that?? </span><br />
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<span style="font-family: Verdana, sans-serif;">I have been grieving for the life I used to have. My job, friends, and freedom. Trigeminal Neuralgia has taken it away, snatched it out from under me almost 5 years ago. I am now almost accepting the inevitable truth that I will have TN for the rest of my life. It's a hard pill to swallow, but I know things could be a hell of a lot worse. </span><br />
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<span style="font-family: Verdana, sans-serif;">My pain is awful now, so bad that I cry my eyes out. I bury my head in my pillow to hide this from others. This is my Battle and I must fight it. I have wonderful support. My family are there when I need them, and I do need them often. </span><br />
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<span style="font-family: Verdana, sans-serif;">Fibromyalgia has also decided to wreak havoc on my body. It's insane. I feel like an old woman at times, every bone and joint in my body scream in pain. My shoulders, elbows, hips and feet are really bad. I am always tired, even if I sleep. It's wearing me out. I have an appointment with the Rheumatologist soon, so lets hope he will have a magic wand and make it go away. If not, I will just have to keep going. Taking things day by day, and sometimes hour by hour. I have managed so far, no point stressing about things I can't control. </span>Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com1tag:blogger.com,1999:blog-4231770231129260917.post-50750236829994967332017-03-14T16:57:00.000+00:002017-03-14T16:57:55.588+00:00Chronic Pain Times Two<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig1zASnXeHWj89ZLY1p7Ncjgoa1rk1Njv2OQ43y3LuDSvkZ_qD45MckBp-PIEBk4gF4OwCpj-V0yrhmOv96JTCDt3kUKBD3lzwtw-K5VvyBu5T7v92OIyCvZw_IjCOohLrszeih3XeVNQ/s1600/f602ef599cf868db9d32a135044ff417.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig1zASnXeHWj89ZLY1p7Ncjgoa1rk1Njv2OQ43y3LuDSvkZ_qD45MckBp-PIEBk4gF4OwCpj-V0yrhmOv96JTCDt3kUKBD3lzwtw-K5VvyBu5T7v92OIyCvZw_IjCOohLrszeih3XeVNQ/s320/f602ef599cf868db9d32a135044ff417.jpg" width="236" /></a><span style="font-family: Verdana, sans-serif;">It's been a very long time since I posted anything. Everything has been very difficult and up in the air. In my previous post I mentioned that I have had lots of new symptoms. I thought I was getting a bad flu, but the dreaded flu never came, but the pains became more frequent, more widespread and a hell of a lot more painful! I went to my GP, and he thought I may have Fibromyalgia. It was a preliminary diagnosis, as I only had the pains and aches for a couple of weeks. I was advised to just carry on, and hopefully the pains would subside. Guess what, they didn't. </span><br />
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<span style="font-family: Verdana, sans-serif;">Along with the joint pain, my skin is so sore. Clothes feel so heavy, and I am so weak ordinary everyday tasks seem like a huge burden. I am also constantly tired, whether I get some sleep or not. My GP says that it's fatigue, another damn symptom of Fibromyalgia. I have been to my doctors many times since Christmas, and both doctors in the practice agree that as well as Trigeminal Neuralgia, I do have Fibromyalgia. But, Fibro has to be properly diagnosed my a Rheumatologist, so I am hoping with every fiber of my being that it's not Fibro. I would prefer something else that can be cured with some magic pill. Having one incurable Chronic Illnesses is bad enough, but two?? </span><br />
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<span style="font-family: Verdana, sans-serif;">My Trigeminal Neuralgia and Migraine pain has gotten worse than ever before. The intensity is severe, the constant burning on both sides is so difficult to handle. The shocks are quite frequent, there are days when the shocks are only a couple of seconds apart. Those are extremely dark days, and there is nothing I can do, and nowhere I can go for help. </span><span style="font-family: Verdana, sans-serif;">I have vowed never to go to hospital again.</span><span style="font-family: Verdana, sans-serif;"> The more I think of it, the more I realise how badly I was treated while there. My new Consultant lied to me, straight to my face. After I was discharged, I was promised I would be seen as an outpatient within 4 weeks. That was in August 2016. It's now March 2017, and I am still waiting for my appointment. This Doctor has helped to completely destroy my faith in the health system here in Ireland. (Which is not hard.) She lied to me, patronised me and she was quite aggressive and really mean. I was at my most vulnerable while there. I reached out and asked for some help, but all I got was false hope and lies. I will never go back there for help. I have to go back for outpatient appointments, but I will never go to A&E and if I ever do get a letter from her, I will tell her what she can do with it. I am still angry about this, and I realise that it can't be just me. How many other people out there have been treated cruelly in our hospitals?</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3gYaOUT4i-I6GSHPX9TrG5EFHoqRHJoF3RQ5K_TAq6teQx-zAu79-66G1Pek43S2lGK3fBpI4IVs-bb95xm3_s5iZ6OFXrGtVgxHbZ_FZcpzBuJI2mnDxjM0-mDrelWRoZdkO-1fU9GA/s1600/10429324_532424246887729_1743243033786371774_n+1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3gYaOUT4i-I6GSHPX9TrG5EFHoqRHJoF3RQ5K_TAq6teQx-zAu79-66G1Pek43S2lGK3fBpI4IVs-bb95xm3_s5iZ6OFXrGtVgxHbZ_FZcpzBuJI2mnDxjM0-mDrelWRoZdkO-1fU9GA/s320/10429324_532424246887729_1743243033786371774_n+1.jpg" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3gYaOUT4i-I6GSHPX9TrG5EFHoqRHJoF3RQ5K_TAq6teQx-zAu79-66G1Pek43S2lGK3fBpI4IVs-bb95xm3_s5iZ6OFXrGtVgxHbZ_FZcpzBuJI2mnDxjM0-mDrelWRoZdkO-1fU9GA/s1600/10429324_532424246887729_1743243033786371774_n+1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Verdana, sans-serif;"></span></a><span style="font-family: Verdana, sans-serif;">Living with constant excruciating pain is such a battle. Trying to stay as positive as possible, plaster the fakest smile on my face is intolerable, but necessary. Someone very wise said to me recently, "We are all fantastic liars," and she is so right! What do the majority of chronic pain patients say when someone asks how they are?</span><br />
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<span style="font-family: Verdana, sans-serif;"><b>Do they say;</b></span><br />
<span style="font-family: Verdana, sans-serif;">"I'm ok,"</span><br />
<span style="font-family: Verdana, sans-serif;">"I'm fine,"</span><br />
<span style="font-family: Verdana, sans-serif;">"I'm good thanks,"</span><br />
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<span style="font-family: Verdana, sans-serif;"><b><u>or</u></b></span><br />
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<span style="font-family: Verdana, sans-serif;"><b>Do they say;</b></span><br />
<span style="font-family: Verdana, sans-serif;">"I feel like s**t"</span><br />
<span style="font-family: Verdana, sans-serif;">"My pain is really bad today"</span><br />
<span style="font-family: Verdana, sans-serif;">"It feels like Freddy Krueger is tearing open my skull, while battery acid is running down my face and some crazy person has attached jump leads to each nerve."</span><br />
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<span style="font-family: Verdana, sans-serif;">I bet most of us go for the 1st option, where we lie and pretend that everything is sunshine and daisies. This deception is necessary for most of us, but it is draining and exhausting. </span>Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com1tag:blogger.com,1999:blog-4231770231129260917.post-24472190478494468742016-11-27T19:08:00.000+00:002016-12-04T19:11:24.076+00:00Too Much Pain<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "verdana" , sans-serif;">Things have not been great lately. The pain from the now bilateral Trigeminal Neuralgia is completely off the charts. It is so draining and soul destroying. </span><br />
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<span style="font-family: "verdana" , sans-serif;">As I said in a previous post, I am now off Tegretol, but I was put on Topamax. So now I take a delightful cocktail of Gabapentin, Baclofen, Amitriptyline, Veneflaxine, Topamax and Nepramel. I am on fairly high doses of all the medications which makes functioning like a "normal" person difficult. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Lately, the pain has taken on a new intensity. I do believe that the cold weather is a major factor. It feels like thousands of tiny red hot knives stabbing me, over and over again. The shocks are also increasing and they literally take my breath away. As well as the Trigeminal Neuralgia pain, I have Migraines also. When these two conditions appear at the same time, it leaves me unable to get out of bed. For the past 5-6 weeks I have had a lot of joint pain. It feels like my joints are on fire, and cramping at the same time. I get frequent pins and needles in my arms, hands, legs and feet. I don't sleep, the pain is just too much. My doctor has a theory, but I want to wait and see if he is right or wrong. </span><br />
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<span style="font-family: "verdana" , sans-serif;">I am overcome with a lot of guilt. There are days that I am useless, I can hardly take care of myself. I hate being stuck in bed unable to move, I hate having to depend on my family to do things for me, I am 31 years old, not 91! I can't shake the feeling of hopelessness and overwhelming guilt. I feel like I am a burden, a leech, with nothing to add to society. Is this a common feeling among those with a Chronic Pain condition? I try so hard to make something of my life, to do something small each and every day, but light housework such as hoovering and washing dishes is a form of torture. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Logically I know that it's not my fault, I know that I have limitations, but it doesn't mean I have to like it. I want to be able to spend quality time with my family. I want to go and have a small social life, even if it's meeting a friend for a coffee. I want to go back to work, to start contributing to society once again. </span><br />
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<span style="font-family: "verdana" , sans-serif;">If I am in so much pain now, and I mean that this pain is becoming too hard to cope with, what will the pain be like in the future? Will I be completely confined to my bed in 12 months? Will my doctors confirm that I have another condition to add to my impressive arsenal? Will I ever get back to work? Will I have a family of my own someday> </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq7soMw1c34_zjq3dOtqOUitSFir0t21WJa-HSmLBDH47lSbQlWg8LIZkQ4vAortfxMTv_l5wSh1JnKt5V3MBdIhB9sIOREOtbFQ8JMUSisfNatz0Rz2OdX7EbkMOa4roNADbVz65ynU4/s1600/e8296083c9ad28a4f253e91715984975.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq7soMw1c34_zjq3dOtqOUitSFir0t21WJa-HSmLBDH47lSbQlWg8LIZkQ4vAortfxMTv_l5wSh1JnKt5V3MBdIhB9sIOREOtbFQ8JMUSisfNatz0Rz2OdX7EbkMOa4roNADbVz65ynU4/s320/e8296083c9ad28a4f253e91715984975.jpg" width="320" /></a><span style="font-family: "verdana" , sans-serif;">So many questions, and they are impossible to answer. I just want my life back. I don't want another diagnosis, even though I believe that my GP is right about it unfortunately. </span><br />
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<span style="font-family: "verdana" , sans-serif;">I have to work on my feelings of inadequacy and guilt. Logically I know it's foolish, but I get a pain in my stomach when I look around me and realise just how useless I have become. Nobody has called me a burden, nobody has complained that I can't do much to help out anymore. It doesn't change the way I feel, and I wonder are there many of us out there/? Who else feels this way? How do i overcome it? </span>Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com1tag:blogger.com,1999:blog-4231770231129260917.post-51577460891572002016-09-25T00:53:00.001+01:002016-09-25T00:53:02.135+01:00Brain Fog<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;">It's been a long time since I have posting anything, and I am sorry about that. I was in hospital for a week in August and I was worse coming out than I was going in. It's been tough, but some of the brain fog has been lifted. Let me explain. </span><br />
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<span style="font-family: Verdana, sans-serif;">My pain had hit a new level of hell. I was so frightened, and I felt so alone. Trigeminal Neuralgia does that to us, it keeps us isolated, afraid and depressed. Anyway I digress. My GP insisted that I go to A&E, so I did, reluctantly. I hate HATE that hospital, and being away from home sucks. </span><br />
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<span style="font-family: Verdana, sans-serif;">I was admitted straight away, and surprisingly got a bed in a ward quickly. That was it. I was sent for NO tests, NO scans, and I got NO answers. I spent a week there. A week away from home, away from my family, my dog and my cat. I was pissed off, and I wasn't shy about letting them know. </span><br />
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<span style="font-family: Verdana, sans-serif;">A few days into my stay, my medication was slightly adjusted. The Tegretol was reduced and my Gabapentin was increased. The Baclofen and Amytriptaline was the same. The pain got even more intense, and I was given oxynorm and tramadol to try and control it. The opiates didn't even touch it. The new consultant saw me three times, that's all. She came to my room on the last day with a "plan." She was going to increase my Tegretol and reduce my Gabapentin. I saw red. I was being sent home with EXACTLY the same prescription I was already on! So I got mad, and I told her that she didn't have a clue how TN effected my life. I told her that she can go home, sip her wine and put her feet up at the end of the day, my name forgotten in a dusty file in her office.</span><br />
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<span style="font-family: Verdana, sans-serif;">After a while, she agreed to take me off tegretol and put me on topamax. She thought it would help the "Migraine" symptoms. After all, she specialised in Migraines. It's amazing how doctors can change their mind when confronted. </span><br />
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<span style="font-family: Verdana, sans-serif;">I practically ran out of the hospital, but was ambushed by two shrinks. They wanted a chat and gave me info and made me promise to call them. Nope, I am breaking that promise. I don't need a shrink, I need a cure. My mental health issues all stem from the hell of living in chronic pain for the past three years. I know what triggers my panic attacks, so I don't need to sit across from someone and tell them my life story. I have no problem with therapy, none at all. It is just not for me. I have tried it, and it made me worse. </span><br />
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<span style="font-family: Verdana, sans-serif;">So a couple of weeks on, some of the Migraine symptoms have lessened, but the TN pain remains. The intensity is the same, the burning, the shocks and the stabbing pain. I am happy that the head pressure isn't as intense and my left arm no longer goes numb. The Tegretol fog is also gone, and I feel like I have woken up from a two year sleep. Tegretol is a dirty drug, and I will never take it again. I can think clearly again, I can concentrate and I feel more like the old me. If only this TN pain could decrease. </span><br />
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<span style="font-family: Verdana, sans-serif;">I saw my Neurosurgeon the other day, and he is reluctant to do any more procedures just yet. He says there are no visible compression's on my MRI, and I am so young, surgery is a last resort. </span><br />
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<span style="font-family: Verdana, sans-serif;">So I am still in pain, but the Trigeminal Neuralgia Awareness Campaign has kept me sane. The more awareness, the better. We may finally get a cure. </span>Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com2tag:blogger.com,1999:blog-4231770231129260917.post-68056142891967083292016-08-15T00:33:00.001+01:002016-08-15T00:33:18.650+01:00I'm Ok. <span style="font-family: Verdana, sans-serif;">I have had a couple of comments, and I appreciate all of you who have wondered where I have been. Over the past two weeks, I have spent a week in hospital, and the rest of the time in completely pissed off pain. I'm ok, but I have been told some things that I need to process, it's nothing too concerning. It's just some things are not the way I thought they were. I will give more detail in a further post when I can wrap my head around some things. Thank you all. </span>Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-74536335640160043382016-07-16T17:03:00.000+01:002016-07-16T17:03:26.395+01:00Three Years of Pain.<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;">It's three years this week since the Trigeminal Neuralgia beast started to hunt me down, and ever since that day it has been stalking me, never leaving me alone. The pain has gradually gotten worse over time, and now it's at an unbelievable level, a level I can't tolerate. </span><br />
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<span style="font-family: Verdana, sans-serif;">Doctors have tried and tried to help me, but as of this moment it was all a gigantic waste of time. I don't blame them at all, I know that they have done all that they could. It's this illness. It is monstrous and mysterious. </span><br />
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<span style="font-family: Verdana, sans-serif;">So let me talk about the last couple of months. To but it bluntly it has sucked. My pain has changed slightly. The TN pain started on my left side originally, and I have ATN, so it NEVER goes away. About 6 months ago, it started on my right side, but not so bad at first. Now, it is a rival to my left side. How the hell can two Trigeminal Nerves screw up at the same time? Every moment is torture, some days are better than others, but on the whole, the burning and stabbing pain is always there. I can't forget about those shocks either, they invade my life regularly. There are days when the shocks are almost constant. </span><br />
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<span style="font-family: Verdana, sans-serif;">One fairly new symptom is a crushing pain in my head, with most of the pain targeted over my eyes. Light bothers me a lot too, and sometimes I feel physically sick. It's not often that the nausea takes over though and I am thankful for that. My balance is wonky too. </span><br />
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<span style="font-family: Verdana, sans-serif;">I have looked up the new symptoms and it sounds like cluster headaches. I have already been diagnosed as having Migraines, so this latest addition pisses me off. I will talk about this to my pain specialist on my next appointment. My GP is powerless to amend my medication, and he is reluctant to prescribe anything else. </span><br />
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<span style="font-family: Verdana, sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-TqoQarDzO9_8u2LD6KMv2twYf-T59dBFNSA87nel8HX_6y-cjt4SRFCzxabuaL6TEg9bTFwOlxYXgVBQ9DQmxG2S03cX-LPUpLKFeJ1GJWe7msXPweYnhcPrd5K45HLbCwGaXXm1iqE/s1600/1aa92c1dd24ef0241a251de01521d2de.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-TqoQarDzO9_8u2LD6KMv2twYf-T59dBFNSA87nel8HX_6y-cjt4SRFCzxabuaL6TEg9bTFwOlxYXgVBQ9DQmxG2S03cX-LPUpLKFeJ1GJWe7msXPweYnhcPrd5K45HLbCwGaXXm1iqE/s200/1aa92c1dd24ef0241a251de01521d2de.jpg" width="178" /></a></span></div>
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<span style="font-family: Verdana, sans-serif;">I dread to think about how I will feel this time next year. Will the pain continue to spiral out of control, OR will one of my Consultants figure out a way to help? I have to keep on hoping. All of us who have been ravaged by this sadistic illness have to keep hoping and to never give up! </span><br />
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<span style="font-family: Verdana, sans-serif;">Our Awareness Day on October 7th is all about raising the public perception of this illness, and it is global. There are fantastic places Lighting Up Teal all over the world, including 15 in Ireland. A team of dedicated TN sufferers have committed themselves to creating worldwide awareness, and it is coming along nicely. The full list can be found on the TNNME website. </span><br />
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<span style="font-family: Verdana, sans-serif;"><a href="http://www.tnnme.com/2016-light-up-teal-4-tn.html" target="_blank">TNNME - Light Up Teal 2016</a></span><br />
<br />Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-55214907508463399352016-06-02T00:53:00.001+01:002016-06-02T00:53:11.658+01:00Summer v's Trigeminal Neuralgia<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCCemYibACgC5zLt46x5PEN3Hrgf66UuAi7IdtH8GOLxNbREP5gyKs2Db3YWaJdXU6KaS9dpsK-fz_-p-00THzDWAPHpp5McEqt1SOGVrob0YOUB_LIsR5qKMW6NmgOuHDgKNYA2s54Q8/s1600/421e58d3024373fc351e328df6c2d5fd.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCCemYibACgC5zLt46x5PEN3Hrgf66UuAi7IdtH8GOLxNbREP5gyKs2Db3YWaJdXU6KaS9dpsK-fz_-p-00THzDWAPHpp5McEqt1SOGVrob0YOUB_LIsR5qKMW6NmgOuHDgKNYA2s54Q8/s320/421e58d3024373fc351e328df6c2d5fd.jpg" width="213" /></a></div>
<span style="font-family: Verdana, sans-serif;">All during the winter, I was hoping and wishing that the weather would get warmer. Well, the weather has indeed gotten warmer and it has had the opposite effect on my pain than expected. </span><br />
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<span style="font-family: Verdana, sans-serif;">My Trigeminal Neuralgia pain has significantly increased in recent weeks. There are a couple of reasons that this could be happening. Firstly, my pain specialist wanted me to get off tegretol. I started to reduce my doses, which isn't pleasant at all. The intensity of my pain sky rocketed! I thought that I had hit my tolerance level, but I couldn't have dreamt that my pain would get worse. I made the decision to go back on tegretol, albeit a lower dose than before.</span><br />
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<span style="font-family: Verdana, sans-serif;">Sadly, my pain is still as bad as ever, and the hot weather we are having at the moment isn't helping at all. My face burns constantly on both sides, and the high temperatures suck. It's ridiculous. The cold weather bothers me, the hot weather bothers me, wind bothers me and I can tell when a storm is coming. There is absolutely zero relief at all! </span><br />
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<span style="font-family: Verdana, sans-serif;">I haven't a clue what the future holds for me. At the minute the weather is bright, but my spirits are low. I have had to cancel arrangements, let people down and I am a cranky bitch most of the time. I have accepted that this is what my life is like for the moment, but it doesn't mean that I have to like it. </span><br />
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<span style="font-family: Verdana, sans-serif;">I wonder if the warm weather bothers anyone else with Trigeminal Neuralgia? Everyone usually talks about the cold weather and wind, especially in Ireland where winter lasts about 10 months. I don't remember being bothered by the heat last year, but my pain has changed in the past 12 months. As well as it being Atypical, it's now more intense, I have pressure between my eyes and the top of my head often, my balance is completely wonky, and it is bilateral now. </span><br />
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<span style="font-family: Verdana, sans-serif;">I am begging to see my pain specialist, but the health system here is so crap, I am not holding out much hope. I have regular appointments with him, but I need to see him urgently. I can't stick this pain, I just can't. My GP will help me as much as he can, but it doesn't help my now. Every day that passes feels like a month. There are so many struggles, even brushing my hair or teeth takes it out of me. Anyone with Facial Pain knows what I mean. I am hoping that tomorrow will be a better day. </span><br />
<br />Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com1tag:blogger.com,1999:blog-4231770231129260917.post-56106574052427998412016-05-08T20:58:00.002+01:002016-05-08T20:58:44.135+01:00Dr. Paul Murphy, Pain Consultant. <div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Verdana, sans-serif;">Dr. Paul Murphy. Pain Consultant, St. Vincent's Hospital, Dublin. </span></div>
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<span style="font-family: Verdana, sans-serif;">He talk about Chronic Pain. </span></div>
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/f0ClNzL84II/0.jpg" src="https://www.youtube.com/embed/f0ClNzL84II?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<br />Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-21870384783324568942016-04-26T23:23:00.001+01:002016-04-26T23:23:45.804+01:00Trigeminal Neuralgia Hell.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoJ3A-q1J6z8LRa0z2jXUHkB3_yf6hwoJoWHTjxAkZgaGTQmKfS8wsCbYyVrCkufp-dDdAdHbRGALrcDK01oL_PwBXotQpdNouQi_bXSx9NqA0mXkMfzLRS2VL5iISP7EneMtnI1m_nao/s1600/12974348_1602939420028717_508633792754772257_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="296" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoJ3A-q1J6z8LRa0z2jXUHkB3_yf6hwoJoWHTjxAkZgaGTQmKfS8wsCbYyVrCkufp-dDdAdHbRGALrcDK01oL_PwBXotQpdNouQi_bXSx9NqA0mXkMfzLRS2VL5iISP7EneMtnI1m_nao/s320/12974348_1602939420028717_508633792754772257_n.jpg" width="320" /></a></div>
<span style="font-family: Verdana, sans-serif;">Unfortunately, I have no good news. I have seen both my Neurosurgeon and Radiologist in the past couple of weeks, and more radiation off the table. My Neurosurgeon was so nice. He is a gentleman and he was completely straight with me. No bullshit. He told me that I may never find any solutions, and I have to make peace with that. I couldn't be angry with him, because I could see the empathy and sincerity on his face. I guess a successful treatment is not in my immediate future. </span><br />
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<span style="font-family: Verdana, sans-serif;">I was very deflated coming home from the hospital. A small part of me hoped that my doctors were going to come up with something that will definitely help me. Trigeminal Neuralgia is hell, and it is so tricky to treat. It could take years!! </span><br />
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<span style="font-family: Verdana, sans-serif;">At the moment, my pain is off the charts. My left side is between 8-10/10 and my right is between 6-9/10. Both sides are constantly painful, but the pain is more intense in my left side. It is unnerving how painful the right side has become since Christmas. It is slowly getting worse and worse. It is so hard to cope now. </span><br />
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<span style="font-family: Verdana, sans-serif;">Simple activities that most people take for granted is virtual impossible for me now. I hate brushing my hair, washing my face and cleaning my teeth. It leaves me with intense zaps and burning pain, and sometimes it makes me cry. Imagine the tears falling down your face when you have TN. It is like acid trickling down your face with constant stabbing pain. It sucks.</span><br />
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<span style="font-family: Verdana, sans-serif;">The weather is great now, except for the fecking wind. The sun shines, although it's still cold. I could cope with that, wrapping myself up like an onion. The wind is a no go. I can't go outside, and if I do it's just inviting a 10/10 pain level for a day or two. </span><br />
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<span style="font-family: Verdana, sans-serif;">My mood has been dark, there are other factors that are contributing to my well-being too, and I can tell you, I am at breaking point. Trying to keep a smile on my face for those around me is exhausting, and I just can't do it anymore. I have a great circle of people around me who try their best to understand. They don't, and it's not their fault, so I don't blame them. I am encouraged to get out and about, as if that will make a difference. </span><br />
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<span style="font-family: Verdana, sans-serif;">When you have serious pain, especially Trigeminal Neuralgia pain, there is nothing anyone can do to make it better. That must be so upsetting and frustrating to our families and friends. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXQMUpWKEemLc8rGG6vdI-rWj_Dh5I7eKzKyIsMe-XZsbLY9rg6YSF_irVPhAxO9KddY-3aVS1nN30gac90jrnBZuxauKyt1Ifr_3lBO92cfaI6OasozEoyGZBBMGxUKD1SlnA_XqQEtQ/s1600/FB_IMG_1424658829348.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXQMUpWKEemLc8rGG6vdI-rWj_Dh5I7eKzKyIsMe-XZsbLY9rg6YSF_irVPhAxO9KddY-3aVS1nN30gac90jrnBZuxauKyt1Ifr_3lBO92cfaI6OasozEoyGZBBMGxUKD1SlnA_XqQEtQ/s200/FB_IMG_1424658829348.jpg" width="200" /></a><span style="font-family: Verdana, sans-serif;">I am also slowly coming off Tegretol. My Pain Specialist wants me to come off it and start on another drug. I reckon that my pain is so much worse lately due to the Tegretol leaving my system. I am going to my GP, and I will tell him I am going back onto my regular dose of Tegretol. I have called and emailed my Pain Specialist's office, asking for a cancellation. </span><br />
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<span style="font-family: Verdana, sans-serif;">So much is happening now, and most of it just sucks. We have to keep going though. Don't we? </span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span>Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com1tag:blogger.com,1999:blog-4231770231129260917.post-14472514464522542132016-03-10T21:36:00.000+00:002016-03-10T21:36:04.534+00:00Hour by Hour, Day by Day.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizdwP2GITOsJ7j0sebZa4rgDgVbdXviPg0DglfAI-oTOa-1jSZ4DQzW2ISqsYQYf2HK_Qgoe8SZ6GGFzAslUDsak8sBDTsHVTkyBRFWSi-3AT6DnWVGBsZ_UxzDRiwWlAPZSaTJgt-qlU/s1600/68644b7bf3f3202e1f5a1b53cdc6d96c.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizdwP2GITOsJ7j0sebZa4rgDgVbdXviPg0DglfAI-oTOa-1jSZ4DQzW2ISqsYQYf2HK_Qgoe8SZ6GGFzAslUDsak8sBDTsHVTkyBRFWSi-3AT6DnWVGBsZ_UxzDRiwWlAPZSaTJgt-qlU/s1600/68644b7bf3f3202e1f5a1b53cdc6d96c.jpg" /></a></div>
<span style="font-family: Verdana, sans-serif;">My Stereotactic Radiosurgery has failed. I know it can take some time, but I've given it enough time to work. I'm disappointed, and sadly my pain is worse than ever. </span><br />
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<span style="font-family: Verdana, sans-serif;">On my left side, I have Atypical Trigeminal Neuralgia, but now I have pain on my right too. Unlike the left side, the pain comes and goes on my right, which means I have TN type 2 on my left and TN type 1 on my right. What are the chances that I would get this hellish condition on both sides? </span><br />
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<span style="font-family: Verdana, sans-serif;">The past few days have been really tough and sleep has been practically non existent. Sometimes I grab a few hours sleep here and there, but I can't sleep now. The pain is just too extreme, I literally want to bang my head off the wall. Yesterday I wanted to rip my face off. It's a real worry too, my mood is getting darker and darker as the pain gets worse and worse. </span><br />
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<span style="font-family: Verdana, sans-serif;">Finding the positives in life is difficult. I look around me and I see my cat and dog snoozing happily, and I envy them. Writing this is hard, I know what I want to say, but the bright screen is seriously hurting my eyes, sending sharp stabs down my face. If I didn't know how to type I would be in trouble. </span><br />
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<span style="font-family: Verdana, sans-serif;">I have said this before and I will say it again. We need a cure. Living like this isn't right and it isn't fair. We are pumped full of medications, used as guinea pigs to see what, if any procedure will work, There has to be a universal solution, they can walk on the moon and dive to the deepest depths of the ocean, yet fixing us is not even on the World Health Organisation's list of priorities! The Light Up Teal campaign is well underway, and we will change that. </span><br />
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<a href="http://www.tnnme.com/2016-light-up-teal-4-tn.html" style="font-family: Verdana, sans-serif;" target="_blank">Light Up Teal for TN - TNNME</a><br />
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<span style="font-family: Verdana, sans-serif;">Taking it hour by hour and day by day is how I survive and I am surprised my sanity is still intact. Will it be intact in a years time? How about 2 years?? </span><br />
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<span style="font-family: Verdana, sans-serif;"><a href="http://www.tnnme.com/">Petition to the World Health Organisation - TNNME</a>- Trigeminal Neuralgia Petition to the World Health Organisation, please sign and share. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-46857061931477205332016-01-26T20:11:00.000+00:002016-01-26T20:11:33.559+00:00We Need A Cure -- Seriously. <div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpWIBtZ5DnnALJC_I0McuTk3wAjvIWP8dTeZb4DeaehGpk4liZ1jDX3uBkD4XswoqSR8DtPIE6rSDXBPac-i0E3c8EXh5sUnPkVfWbX59qMOVL7VsjF9aXVJRWqW7FqYbXXhRXHiqbxb4/s1600/FB_IMG_1428580654182.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpWIBtZ5DnnALJC_I0McuTk3wAjvIWP8dTeZb4DeaehGpk4liZ1jDX3uBkD4XswoqSR8DtPIE6rSDXBPac-i0E3c8EXh5sUnPkVfWbX59qMOVL7VsjF9aXVJRWqW7FqYbXXhRXHiqbxb4/s200/FB_IMG_1428580654182.jpg" width="173" /></a></div>
<span style="font-family: Verdana, sans-serif;">It's over a week since my Stereotactic Radiosurgery and my Trigeminal Neuralgia pain is as bad as ever. The procedure was performed on my left side, which is my "bad" side, but my right side is gradually getting worse. I am keeping a pain diary. Looking back through the entries, I can see it all in black and white. My left side varies between 8-10 out of 10, and my right is between 5-8 out of 10. </span><br />
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<span style="font-family: Verdana, sans-serif;">I am so disappointed, I hoped and hoped that my pain would be a little better by now. I had dreams of coming off some of the crappy tablets, lifting some of this terrible brain fog. I actually did have dreams, but I awoke to pain. It seems that hoping was pure folly. My doctors have said that it could take several weeks for the pain to ease, but come on, lets be realistic here. It's not going to be that easy. </span><br />
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<span style="font-family: Verdana, sans-serif;">Why can't the medical community get up off their arses and find a cure? I do know that the http:<a href="http://www.facingfacialpain.org/" target="_blank">Facial Pain Research Foundation</a> are doing their level best to discover a cure for Trigeminal Neuralgia. It needs to become a worldwide issue and I believe that nothing will change unless a celebrity is afflicted with this monstrous condition. Now don't misunderstand, I wouldn't wish it on my worst enemy. It's up to the World Health Organisation to pull up their socks and help the millions of people suffering with Trigeminal Neuralgia. There are some people that don't make the statistic. As well as all the mis-diagnosis, our families and friends are living through it too. </span><br />
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<span style="font-family: Verdana, sans-serif;">Watching us in pain, and in horrific pain on a daily basis must be devastating to out families and friends. They are completely powerless and yet my own family are so supportive. I understand that chronic pain is a difficult and sometimes impossible thing to empathise with. Our families are victims of this illness too. They watch us changing from worker bees and social butterflies. We become semi-reclusive and our moods are quite dark. </span><br />
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<span style="font-family: Verdana, sans-serif;">So do I still dare to hope that my procedure will work? If I continue to and the pain remains it will be truly soul destroying. I have this monster two and a half years, and unlike many people my age I dread the year ahead.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjACNawOK_jQRsvCkpFi5QqosrK1mdJpQFHBqrt2r7aWoMtFc6Qe8MbKMynGZWQSO5Utaes16kAaddXZJjR6gHjT6WhNpKHpRRLBlJAl_yVGFVxqROJ_R5wQArnMbuS7OsrzAoc1nK6aLg/s1600/images+%25282%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjACNawOK_jQRsvCkpFi5QqosrK1mdJpQFHBqrt2r7aWoMtFc6Qe8MbKMynGZWQSO5Utaes16kAaddXZJjR6gHjT6WhNpKHpRRLBlJAl_yVGFVxqROJ_R5wQArnMbuS7OsrzAoc1nK6aLg/s1600/images+%25282%2529.jpg" /></a><span style="font-family: Verdana, sans-serif;">Here is a link to the TNnME website, where there is a petition to get Trigeminal Neuralgia onto the World Health Organisation's "Health Topic List." It's a fantastic website and well worth a browse! </span><br />
<span style="font-family: Verdana, sans-serif;"><a href="http://www.tnnme.com/" target="_blank">TNnME - Petition to the WHO</a></span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span>Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-8001467772884783802016-01-17T00:17:00.000+00:002016-01-17T21:20:43.175+00:00Stereotactic Radiosurgery --- Finally. <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgARWunqRNnb4VbA4KDl5s1LU1UntEPIk9WWmsh7L-HQ3B-a1JAuoN4t4cvY4UG01cKc1yBXdAVVCo6KAd-8TZfJziV1pEIR0IIVtGgNzxw9FE8wSUEm9thW0f_3fvqXqS1t6nMImXqxFI/s1600/5FF1.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgARWunqRNnb4VbA4KDl5s1LU1UntEPIk9WWmsh7L-HQ3B-a1JAuoN4t4cvY4UG01cKc1yBXdAVVCo6KAd-8TZfJziV1pEIR0IIVtGgNzxw9FE8wSUEm9thW0f_3fvqXqS1t6nMImXqxFI/s320/5FF1.jpeg" width="320" /></a></div>
<span style="font-family: Verdana, sans-serif;">I have finally gotten my Stereotactic Radiosurgery procedure! Beaumont called me on Tuesday the 12th on January, everything was ready for my procedure the following day. I was excited and nervous at the same time, it's a big deal, well it is to me. Anything that involves radiation in close proximity to my brain makes me nervous. The positives are that it has a great chance to reduce my pain, and that would be absolutely indescribable! </span><br />
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<span style="font-family: Verdana, sans-serif;">I took some painkillers and the lovely nurses in St. Luke's, Beaumont gave me a mild sedative. It was no match for the horror of the mask. The mask was hell. It was so tight, I couldn't even blink. Thinking about it now makes me feel nauseous. As I have Atypical Trigeminal Neuralgia, I have pain all the time. The slightest touch or breeze is like acid running down my face. The mask was a thousand times worse and I don't know how I got through it. The procedure lasted about an hour and a half, well that's what they told me. It seemed longer, much longer. The staff were so nice and so supportive. I held up my hand several times to get their attention. Each time they told me that I was doing so well and to try and hang on for a little longer. I needed that push, otherwise I would have been out of there after five minutes.</span><br />
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<span style="font-family: Verdana, sans-serif;">I don't want to put anyone off, this is my experience. I have spoken to several others who have gotten the same procedure. Some experienced pain, and others felt nothing at all. When you live in excruciating pain, it's worth a shot. Ask any person who suffers from any kind of chronic pain condition, they will try absolutely anything. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyYiiVhhYNNlT5tJR8Dqq1nJ5NBEHaTRcY212ZjG0PLeo0WdaibqPEzLX-_Ikh5PkEtzW6MWFDbG1Nhw8FV0eRctyyApxd9TK0TvVcUnvfMGNLGYc9k08KGUVoVLD9ifDORCtVAJdRbqY/s1600/PE-Radiosurgery_Fig2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyYiiVhhYNNlT5tJR8Dqq1nJ5NBEHaTRcY212ZjG0PLeo0WdaibqPEzLX-_Ikh5PkEtzW6MWFDbG1Nhw8FV0eRctyyApxd9TK0TvVcUnvfMGNLGYc9k08KGUVoVLD9ifDORCtVAJdRbqY/s1600/PE-Radiosurgery_Fig2.jpg" /></a></div>
<span style="font-family: Verdana, sans-serif;">There is no reduction in my pain levels at all. The past couple of days have left me bed bound. I am hoping that it will work, but the doctors said if the procedure worked, it may take a few weeks. </span><br />
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<span style="font-family: Verdana, sans-serif;">I also want to mention something, something that has really pissed me off. In Ireland, you can elect to have Cyberknife treatment in some private hospitals. Cyberknife is very similar to Stereotactic Radiosurgery. It costs in excess of €20,000! If you are lucky enough to have health insurance, the procedure is partly covered. Unfortunately, having a chronic pain condition causes unforseen financial circumstances for those afflicted. This means, of course that so many of us are no longer fit to work and we are either on Illness Benefit or Disability Benefit. There is no way that someone on a Social Welfare payment could afford any kind of procedure privately. Now, there is always a way. Despite the cutbacks and how crappy our health service seems to be, the services are there. We need to push our doctors to come up with treatments and procedures as well as trying different medications. It may be a long wait, but asking for cancellations helps.I have received excellent care, but I have always pestered my Consultants secretaries, and literaly begged for help. </span><br />
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<span style="font-family: Verdana, sans-serif;">Here is a link where Benefits and Allowances are explained fully. </span><br />
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<span style="font-family: Verdana, sans-serif;"><a href="http://www.chronicpain.ie/getting-help/benefits-and-entitlements">Chronic Pain Ireland - Benefits and Allowances</a></span><br />
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<span style="font-family: Verdana, sans-serif;">More information about Stereotactic Radiosurgery can be found here;</span><br />
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<span style="font-family: Verdana, sans-serif;"><a href="http://www.mayoclinic.org/tests-procedures/stereotactic-radiosurgery/home/ovc-20130212">Stereotactic Radiosurgery - Mayo Clinic</a></span><br />
<br />Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-33601914056437819472016-01-05T02:19:00.000+00:002016-01-05T02:19:09.567+00:00Pain, Pain and Even More Pain! <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbutvTzzV3glWXdOP_dxh-fkFdOhTk0VdoigZy_K_0cp5PpkONRe4PSgjj6JjRbBBfRDyWd_xmx1hZj-Yj9WHSUxtfKhO-A96NYTdAUZZDY2yWBKrbtEnSFRPZ6cPqriGib4T3sSr0_YY/s1600/31ec197c9ca0dc9a4814b5230421bd48.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbutvTzzV3glWXdOP_dxh-fkFdOhTk0VdoigZy_K_0cp5PpkONRe4PSgjj6JjRbBBfRDyWd_xmx1hZj-Yj9WHSUxtfKhO-A96NYTdAUZZDY2yWBKrbtEnSFRPZ6cPqriGib4T3sSr0_YY/s200/31ec197c9ca0dc9a4814b5230421bd48.jpg" width="153" /></a><span style="font-family: Verdana, sans-serif;">The intensity of my pain is frightening me. I have gone through too much of it lately and I do not know how much more I can take. </span><br />
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<span style="font-family: Verdana, sans-serif;">I am getting pain on my right side too. Now I have done the sensible thing and I went to the dentist. There was a small chip in a filling, so he fixed that. He took x-rays and there is no dental problem there. Call me crazy, but I was seriously hoping for a rotted tooth, or a missing filling. Alas, my teeth and gums are fine for the moment. I went home, hoping that everything would be fine. </span><br />
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<span style="font-family: Verdana, sans-serif;">I waited a couple of days, hoping that the pain would calm down, and it was residual dental pain. Nope, I was effing wrong. My next trip took me to my long suffering GP. I knew by the look on his face that he suspected that Trigeminal Neuralgia is the culprit, but doing his due diligence, he prescribed some anti-biotics and some pain killers. I went home, a little more hopful, but that nagging feeling in the back of my mind was still there. </span><br />
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<span style="font-family: Verdana, sans-serif;">The past week has been complete and utter hell. I got through Christmas, and oddly enough my pain was bearable. Since last Sunday week, my Trigeminal Neuralgia pain has been increasing. My left side is my "bad" side and I expect the drilling, throbbing and stabbing pain to be there from when I open my eyes in the morning to when I manage to close my eyes at night. The electric shocks are taking my breath away and I feel like I can't breathe. My right side is not as intense, but it's pretty bad. My head feels like it's stuck in a vice, a sharp knife plunging in and out of both ears. Jump leads are attached to every single one of my nerves and it's driving me crazy!! </span><br />
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<span style="font-family: Verdana, sans-serif;">I have been quite depressed too. My general mood is dark, and sometimes I want to fall asleep until they come up with a definitive cure for Trigeminal Neuralgia. Now I want to make one thing clear. I have never, ever thought about suicide, and I hate having to use that word at all. I have cried myself to sleep, screamed into my pillow and stared at my bedroom ceiling trying to retain what is left of my sanity. I still have hope, and I am constantly surrounded by people who understand and who wish they could help me. I have reached out to support groups online, and there are some wise people on there, who know exactly how I feel. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVK7qUjkl92rzcsPBizkH0Kge2ZjM6YuGju5N4Y-8txBbW62MHTsV4icSVTb16zSpMhg1pRQe6UJcf_BMA9cDzk2hRF1XPOSGjihlfqliTtg5bKx64QYE3GjnUg_vVBeXBSizr2qpPfYg/s1600/ab5f7a46a49aa6451c146209a2402de1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVK7qUjkl92rzcsPBizkH0Kge2ZjM6YuGju5N4Y-8txBbW62MHTsV4icSVTb16zSpMhg1pRQe6UJcf_BMA9cDzk2hRF1XPOSGjihlfqliTtg5bKx64QYE3GjnUg_vVBeXBSizr2qpPfYg/s320/ab5f7a46a49aa6451c146209a2402de1.jpg" width="176" /></a><span style="font-family: Verdana, sans-serif;">I am going to my GP again in the morning. The anti-biotics haven't worked, so lets get the ball rolling on a proper diagnosis. I know that my TN is now bilateral, but the sooner my doctor agrees, the sooner all my consultants can amend their treatment plans. I am still waiting for my Stereotactic Radiosurgery procedure, but judging by Ireland's health care system, that is no great shock. </span><br />
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<span style="font-family: Verdana, sans-serif;">At this very moment my pain is an 8 out of 10, which allows me to write this. When the pain gets more intense I can't even look at a computer screen. Now that pisses me off. I can hardly stand even this level of pain. </span><br />
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<span style="font-family: Verdana, sans-serif;">To anyone that reads this who is in a dark place, please reach out. There are support groups everywhere online, and there are some superb ones on Facebook. Talk to friends or family if you can, but if you can't, go and see your GP. </span><br />
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<span style="font-family: Verdana, sans-serif;">It takes tremendous strength to realise that you need help, it's a hard thing to admit. Once it's out in the open, trust me, life will get that little bit easier.</span><br />
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<br />Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-54116395038653070992015-11-19T13:42:00.000+00:002015-11-19T13:42:00.809+00:00Migraines and Masks <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcPxNVtWqJJvRp1LjzIaz9keWSHgB7c3y71Zi8zX9iCf_C_vRPDhhj07aNp6Bclml2JopXUhCm4zYCUSnCTciLm5taz5KwXzwlklNL0CHjwMPWLGhFLrUJNyN6cAZ6dr7QjafLSI173rk/s1600/images+%25283%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcPxNVtWqJJvRp1LjzIaz9keWSHgB7c3y71Zi8zX9iCf_C_vRPDhhj07aNp6Bclml2JopXUhCm4zYCUSnCTciLm5taz5KwXzwlklNL0CHjwMPWLGhFLrUJNyN6cAZ6dr7QjafLSI173rk/s1600/images+%25283%2529.jpg" /></a></div>
<span style="font-family: Verdana, sans-serif;">On Monday, I attended the Migraine Clinic in Beaumont, and I swear that I am getting more and more pissed off with the whole situation. </span><br />
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<span style="font-family: Verdana, sans-serif;">So it all started when I was called by a very young doctor. He was very pleasant and he took a detailed history of my pain. (I had to tell my fecking story AGAIN, despite a file a couple of inches thick was sitting on his desk.) Anyway he was bamboozled with the sheer amount of medication that I am on, and he went to get a more senior doctor. For the life of me I can't remember her name. There is very little the can do for me, and they agree that I may have a migraine element to my pain, but the root of the problem is Atypical Trigeminal Neuralgia. According to the Migraine doctor, I have two choices; another but different nerve block, and an adjustment to my medication. The latter is tricky, as there is a very real chance that my pain and my emotional state could be compromised, I will more than likely have to be admitted to hospital. </span></span><br />
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<span style="font-family: Verdana, sans-serif;">I left the doctors office slightly deflated and a bit angry. I was waiting for this appointment for 18 months, and nothing came out of it. I am going to ring them if the Stereotactic Radiosurgery doesn't work. </span></span><br />
<span style="font-family: Verdana, sans-serif;"><span style="font-family: Verdana, sans-serif;"><br /></span><span style="font-family: Verdana, sans-serif;">So on Tuesday I was back in Beaumont, but I was in the oncology section. Preparations for my procedure were underway, and I will say one thing. It hurt like hell. I had to get bloods taken which doesn't bother me at all. Then I had to wait (for 3 hours) for them to send me for the CT scan. Now getting any of these scans aren't pleasant. I had to get a plastic like mask made and that hurt like hell. I was in so much pain, I can't describe it. My face is painful all the time, the acid burning pain is a constant companion, and the electric shocks and stabbing pains visit regularly. If any one touches me, it causes me unimaginable pain. Pain so extreme that I need to yell out or I collapse. </span></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg14cxl1fBB-NQwIm-yM9gpfQKLxOBW76CAXyk_tVJXwfykeDq3YsYDEekXEXDIp4qm6ArI_1d9uEqBOFG23680AexiVlPxnRmxWVqclT-RVDXXcvI1w_WflXfbkwJQmVFJgc6cTIAA1oE/s1600/2d36edcda74c4eafdcff0326863dc170.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg14cxl1fBB-NQwIm-yM9gpfQKLxOBW76CAXyk_tVJXwfykeDq3YsYDEekXEXDIp4qm6ArI_1d9uEqBOFG23680AexiVlPxnRmxWVqclT-RVDXXcvI1w_WflXfbkwJQmVFJgc6cTIAA1oE/s200/2d36edcda74c4eafdcff0326863dc170.jpg" width="133" /></a><span style="font-family: Verdana, sans-serif;"><span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">The mask is made of heated plastic mesh stuff and it had to be moulded to my face, which means the nurses and radiologists had to touch me. They were so nice and understanding, so I couldn't be angry. The pain is still extreme, I can still fell that fecking mask on my face now, and I know that the next couple of days are going to be really bad. </span></span><br />
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<span style="font-family: Verdana, sans-serif;"><span style="font-family: Verdana, sans-serif;">This is the final stage before the procedure and I can't wait to get it all over and done with. I may have a low pain Christmas and that will be a major improvement on last year. A 20% chance of lower pain seems like a small chance, but it's better than nothing. </span></span><br />
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<span style="font-family: Verdana, sans-serif;">There have been a lot of success stories, and I will say that the side effects are ridiculously frightening, but the chances of some of these side effects occuring are very small. I refuse to worry about it, until I have a reason to panic. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0United States37.09024 -95.712891000000013-36.4186355 99.052733999999987 90 69.521483999999987tag:blogger.com,1999:blog-4231770231129260917.post-90484500528611382882015-09-25T22:55:00.001+01:002015-09-25T22:55:44.814+01:00Hitting a Nerve <span style="font-family: Verdana, sans-serif;">So I had a nerve block done yesterday, and I feel worse than ever!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnzZBXJgKRyyeIJu24R56szgaUk0ZB3coZnVDQMpH1uo8iLrpjJqMn13eTQgt0g2C0XVqEyAMjEWjqBDJTmZ8s-nswtG-YdwDsRvW8K38emVnC_wpL1LRrpU1v7fDyZ2hDlTOk3OTcWpQ/s1600/ab5f7a46a49aa6451c146209a2402de1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnzZBXJgKRyyeIJu24R56szgaUk0ZB3coZnVDQMpH1uo8iLrpjJqMn13eTQgt0g2C0XVqEyAMjEWjqBDJTmZ8s-nswtG-YdwDsRvW8K38emVnC_wpL1LRrpU1v7fDyZ2hDlTOk3OTcWpQ/s200/ab5f7a46a49aa6451c146209a2402de1.jpg" width="110" /></a><span style="font-family: Verdana, sans-serif;">After the procedure, I woke up my face was on fire, my head felt like it was trapped in a vice and I screamed out with pure agony. I was told not to expect it to work straight away, if it worked at all. I had the nurses shove an oxygen mask on my already throbbing face, which caused electric shocks to bounce around my head. They must have thought I was nuts, but I was in such pain I couldn't speak. </span><br />
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<span style="font-family: Verdana, sans-serif;">Sometime later, I calmed down. I suspect I was given something, because my blood pressure was sky high. The tightness in my head lessened a little, and as soon as I could stand, and with the doctor's blessing, I left the hospital. There was no way in hell I was going to stay any longer than necessary. </span><br />
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<span style="font-family: Verdana, sans-serif;">During the long drive home I slept a little, the anaesthetic kept knocking me out. I got home and I suspected that the block had failed. On top of my usual nightmarish pain, I felt like I was hit around the head with a crowbar. I could feel some numbness on the top of my head, but this morning it was gone. I am so disappointed, and confused. Why aren't any of the medications or procedures helping me? </span><br />
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<span style="font-family: Verdana, sans-serif;">Trigeminal Neuralgia is such a monstrous condition, it's so difficult to treat and there is no cure. I am not giving up though, there HAS to be something the doctors can do! They are the absolute best in their fields and I have faith in them. </span><br />
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<span style="font-family: Verdana, sans-serif;">I have been told that there may be a Migraine element to my pain, and until I see that particular specialist (I got an appointment for November,) I won't have any answers. If I suffer from migraine's too, and I really suspect I do, I may finally get some medications that will help both my Atypical Trigeminal Neuralgia and Migraines. </span><br />
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<span style="font-family: Verdana, sans-serif;">Fingers crossed, and perhaps the block will take effect after all. All I have got is hope. </span><br />
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<span style="font-family: Verdana, sans-serif;"><b>H - Hold </b></span><br />
<span style="font-family: Verdana, sans-serif;"><b>O - On</b></span><br />
<span style="font-family: Verdana, sans-serif;"><b>P - Pain</b></span><br />
<span style="font-family: Verdana, sans-serif;"><b>E - Ends </b></span><br />
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<br />Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-7866875295626334542015-08-22T23:43:00.004+01:002015-08-22T23:43:42.361+01:00Panic Attacks and Chronic Pain<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;">Overwhelming sadness is threatening to engulf me every moment of every day. </span><br />
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<span style="font-family: Verdana, sans-serif;">Pain is ridiculous, and it is so powerful that it literally brings me to my knees. Trigeminal Neuralgia is nasty, and I wouldn't wish it on my worst enemy. The severity of my pain is impossible to express, but I only have this condition 2 years. What will the pain be like next year? Or the years to come?</span><br />
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<span style="font-family: Verdana, sans-serif;">The panic takes hold and I am paralysed for a while. I have pain all the time, but when a bad "attack" comes, I can sense it. The knowledge that horrific pain is only moments away is terrifying, and I am powerless to stop it! I am trying constantly to calm down a little, and meditation is working for me. I go to my bedroom and light a candle. I sit down on the floor and try and empty my mind which is a really hard thing to do. When I am in the midst of a really bad panic attack I focus on the animals on my wall. I have put up loads of pictures of my favourite animals, because I need something positive to focus on. My family are on another wall, and even if I am alone, I don't feel it. </span><br />
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<span style="font-family: Verdana, sans-serif;">The panic that the pain brings is almost as bad as the pain itself, and it is something that is commonly overlooked. We are given a cocktail of medication to try and combat the pain, but what about our mental health? I am beating it, but it's a daily battle.</span><br />
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<span style="font-family: Verdana, sans-serif;">With all the work that I need to do to simply function, it's a wonder that I am able to get dressed in the morning. I have also learned to give myself a break. I was so hard on myself, I need to cut myself some slack. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz0NVseT-g4yBgcWJGoPASIty9YLGEwKaphulQN82jPVNfHZYN3JkneTyzGMZJQ-vM89xYm_TSBmV7TqNQ4BB8Mqgm2ktRjBlZ5xKe7nrB5KqW2FVPJLR42FMAohUWYC3WvAdYT1KcOC0/s1600/d9073ad32c6c523f99e914580e7f96bf.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="315" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz0NVseT-g4yBgcWJGoPASIty9YLGEwKaphulQN82jPVNfHZYN3JkneTyzGMZJQ-vM89xYm_TSBmV7TqNQ4BB8Mqgm2ktRjBlZ5xKe7nrB5KqW2FVPJLR42FMAohUWYC3WvAdYT1KcOC0/s320/d9073ad32c6c523f99e914580e7f96bf.jpg" width="320" /></a><span style="font-family: Verdana, sans-serif;">Panic attacks are no joke and they can be so debilitating. There are so many reasons for them and they cannot be overlooked or ignored. You can't "snap out of it," that is the worst thing to say to someone. I am stubborn and I choose not to go and see someone about them yet, but if they get any worse I will. There is no shame in seeking help. We all need help sometimes, and that is another lesson I have learned. There are fantastic support groups out there to reach out to. </span><br />
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<span style="font-family: Verdana, sans-serif;">Dealing with chronic pain is a full time job, and if our mental health is hurting, that is overtime without any pay or benefits. </span><br />
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<br />Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-84282445283366029602015-08-07T09:55:00.000+01:002015-08-07T09:55:19.696+01:00Light Up Teal <div class="separator" style="clear: both; text-align: center;">
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<br />Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-37355583093246272222015-06-21T01:32:00.001+01:002015-06-21T01:32:08.902+01:00Pain and Anger<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqGPoLVXkYnAsDtFRHobfdEW0pDlt1GBW9mwIoWTyl4zS0WUIYHblzVUn9A4852DlbISSjLVXfB4FCRkeJgq_woGXdY50e7b7GF9twaKSw7OczBo4M3cQ-fee0KJ0f0ub2ll2KXfoYgqk/s1600/images+%252825%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqGPoLVXkYnAsDtFRHobfdEW0pDlt1GBW9mwIoWTyl4zS0WUIYHblzVUn9A4852DlbISSjLVXfB4FCRkeJgq_woGXdY50e7b7GF9twaKSw7OczBo4M3cQ-fee0KJ0f0ub2ll2KXfoYgqk/s1600/images+%252825%2529.jpg" /></a><span style="font-family: Verdana, sans-serif;">So I am having the week from hell. It doesn't differ from any other week I guess, but I am becoming weary of it all. Trigeminal Neuralgia is a condition that has altered my life completely, an not in a positive way. </span><br />
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<span style="font-family: Verdana, sans-serif;">I am also becoming aware of all the things that I can't do any more. I used to always focus on what I can do, and banish all the negativity from my mind. I can't do that now. I couldn't go to the cinema this weekend, I can't go to concerts any more, and it's impossible most days for me to leave my house. The inevitable roars of the dinosaurs and the bright flickering lights have stopped me from going to see Jurassic World. I had to leave the Avengers early a month or so ago, I literally couldn't cope with the sensory overload. </span><br />
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<span style="font-family: Verdana, sans-serif;">It may seem odd, but loud noises, bright lights (especially strobe lighting) and strong smells, trigger an attack that lasts for days at a time. It's awful, the left side of my face is burning constantly as it is. The burning pain averages at a 8/10 morning, noon and night. Add to that bursts of electric shock and stabbing pain, I often cannot even rate the pain. </span><br />
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<span style="font-family: Verdana, sans-serif;">I used to feel sorry for myself, and I was entitled too. Now I am angry. I am so angry that this condition is chipping away at my life with a giant chisel. I am on ridiculous amounts of medications and I am still waiting for the team of consultants to help me. They have acknowledged that my case is possibly the most complicated they have ever seen. Saying that, I have their promises that they are doing the best that they can. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZn2uavqgt881tK89oKHKsRu8ekb9bXwkfzKS8-WNtPOJb_I7xrFbW2ZZ9x2LKmmP9PlEEGLJGgtIJjw-aGqQtXBCwfBlU9ctTi7y1eBNINIim_GtxfMhsmXfkXhdBBdJmVR_V6xkXwLM/s1600/bce3d809f76d74d4d2cd0f30983757df.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZn2uavqgt881tK89oKHKsRu8ekb9bXwkfzKS8-WNtPOJb_I7xrFbW2ZZ9x2LKmmP9PlEEGLJGgtIJjw-aGqQtXBCwfBlU9ctTi7y1eBNINIim_GtxfMhsmXfkXhdBBdJmVR_V6xkXwLM/s200/bce3d809f76d74d4d2cd0f30983757df.jpg" width="134" /></a><span style="font-family: Verdana, sans-serif;">I couldn't go to Slane this year and there are awesome concerts coming up that I would love to go to. I know for a fact that I can't go, sometimes the noise and lights in a supermarket are too much for me. </span><br />
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<span style="font-family: Verdana, sans-serif;">Since when did I become such a delicate human being? It makes me angry and sad at the same time. I am hoping that the Stereotactic Radiosurgery will help me, if not I am willing to try anything else. Well except Acupuncture etc. I wonder if this is normal, do people with chronic pain feel this way? I am battling with increasing insomnia, or painsomnia. It is impossible to sleep whilst in so much pain. It is also a possibility that this is adding to my general bad mood. </span><br />
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<span style="font-family: Verdana, sans-serif;">Depression is another thing I can thank this monstrous condition for. I am trying to keep a handle on it, and while I am not a fan of "prayer" or some holistic stuff, I do believe in the power of meditation. Actually writing down how I feel is helping. As I write I can feel some of the tension leaving me, and that is the reason for this blog. </span><br />
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<br />Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-54090741140804152462015-05-06T12:55:00.000+01:002015-05-06T13:29:43.463+01:00Stereotactic Radiosurgery (Gamma Knife)<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;">In my last post, I was battling a serious decision. Stereotactic Radiosurgery (Gamma Knife) is no joke. Despite my reservations and my spine chilling fear, I have decided to go ahead with it.</span><br />
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<span style="font-family: Verdana, sans-serif;">I have weighed all of my options, and I have asked my family and some good friends for their advice. I have debated, an completely freaked out about what I was going to do. As this pain is getting worse and worse, I think I have no choice. The risks for side effects are there, but every single surgery and procedure has their own set of side effects.</span><br />
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<span style="font-family: Verdana, sans-serif;">After watching some videos and doing some research, I feel more confident. There is a 20-30% chance of success, but I may be one of the lucky ones. I dream about being pain free, or having some low pain. If it lasts for a couple of weeks or months, it will be worth it. </span><br />
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Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-90263877172454369782015-04-20T17:01:00.001+01:002015-04-20T17:01:14.234+01:00Some Scary Decisions Ahead.<br />
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<span style="font-family: Verdana, sans-serif;">This morning I had an appointment with a Radiologist in the Oncology Unit in Beaumont Hospital. It didn't go as planned though, and I am left confused and depressed. </span><br />
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<span style="font-family: Verdana, sans-serif;">As I have Atypical Trigeminal Neuralgia, I am very difficult to treat. I have a constant burning pain down the left side of my face, stabbing pain in my ear and jaw with electric shocks joining in. This is going on 2 years now and I am losing hope. This morning I went to my appointment and the treatment initially offered is called <a href="https://www.nice.org.uk/guidance/ipg85" target="_blank">Stereotactic Radiosurgery</a></span><span style="font-family: Verdana, sans-serif;"> My Neurosurgeon told me that the chances of success is between 20&30% and there are some side effects. </span><br />
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<span style="font-family: Verdana, sans-serif;">It turns out that there is a whole lot more to this than I thought. The procedure involves a huge dose of radiation focused on one piece of the fifth cranial nerve. This happens to be close to my brain stem which worries me. Apart from a low success rate, I could be left with numbness down the left side of my face, my face dropping, vision problems, the left side of my body could be numb or there could be severe muscle weakness. As there would be an enormous amount of radiation focused on the nerve, it could cause cancerous tumours in the brain in the future. </span><br />
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<span style="font-family: Verdana, sans-serif;">I will admit that I am scared. Although the chances of these side effects are low, it is a possibility!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKk2ckx8gk_tmU2898-Yl7CDPzymnII-SvDdOj8QSngqNbh2x0_bLf2obsfKO7BjKdC8zeLbw-dn31G-p3csk9cCpzrQ9c17boQUcyCbRvfM22L-_g6cafRt0INOxTz-BJuZVWqZVFlgI/s1600/ch15f15.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKk2ckx8gk_tmU2898-Yl7CDPzymnII-SvDdOj8QSngqNbh2x0_bLf2obsfKO7BjKdC8zeLbw-dn31G-p3csk9cCpzrQ9c17boQUcyCbRvfM22L-_g6cafRt0INOxTz-BJuZVWqZVFlgI/s1600/ch15f15.jpg" height="320" width="230" /></a><span style="font-family: Verdana, sans-serif;">For the chance of a low pain future, is it worth putting myself at risk? What if I end up suffering paralysis? How will I cope and what will my quality of life be? What if I end up numb? I was told that it could effect my left eye and I could get an ulcer there. If something goes wrong, what will I do? </span><br />
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<span style="font-family: Verdana, sans-serif;">I have faith in my doctors, I really think they are excellent, but they are mere men. They are not magicians or miracle workers and they have their limits. </span><br />
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<span style="font-family: Verdana, sans-serif;">I really don't think that I can go through with it, although the doctors have to have another meeting to discuss my case. They may decide that it's too risky, or that as my symptoms are so atypical there is little point taking a risk. </span><br />
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<span style="font-family: Verdana, sans-serif;">I am seriously confused, and I am sad. I was full of hope, dreaming of a procedure that could remove a little of this monstrous, beastly and constant pain. </span>Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-75132944367376433492015-03-22T21:36:00.002+00:002015-03-22T21:38:27.229+00:00Darkness Into Light??<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;">I never thought that I would say this, but there may be light at the end of my long and painful journey. </span><br />
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So over the past few weeks, I have been to my neurologist and my neurosurgeon, among others. I have been told that my particular type of ATN is one of the most complicated cases that they have seen, and this didn't make me feel any better. The good news is, that they are determined to try and get me some relief. I was given three options, but the first option preferred by my neurosurgeon is the Cyberknife. It is not invasive and I was told that it was painless. There can be some nasty side effects, but I really couldn't give a damn. I've had enough of this pain. Unfortunately I was told that there is only a 20-30% success rate that there will be ANY difference to my pain, whilst most others with typical Trigeminal Neuralgia have about a 50-60% success rate, according to my doctors. If that fails, nerve blocks and open brain surgery are next. </span><br />
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I must say here that my Neurosurgeon is excellent. He knows what he is talking about, and he is very direct. He also has enough empathy which makes him likeable. He spoke at length about the procedure, and of course told me that I could be at risk of even MORE painful conditions! I don't really have a choice though, I need to do something about the pain, I have to take the risk. </span><br />
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I will have this done in about 3 months, which is great considering the completely ridiculous waiting lists and the stupid, stupid Health Service Executive. I have the right to moan and complain, I have sat in A&E in unbearable pain for long periods of time, without pain management and there was one doctor that asked me what Trigeminal Neuralgia was! After sitting in an ass numbing chair for eighteen hours, then being admitted and sitting in another chair for a further twenty four hours, a doctor had the nerve to ask me what trigeminal neuralgia was. The best way to put it is this; I got very angry. I was tired, crying with pain and extremely pissed off. I then began to wonder what kind of a health service can treat people that way. Then I looked around me. Nurses were running from patient to patient, and I could see that they were trying their best. The sheer number of patients, packed into the small department was scary. People in trolleys were lined up against each other, all illusions of privacy gone. Then there were the people in chairs, also lined up parallel to the trolleys, leaving just enough space for the nurses to scurry by. I looked at the doctors too, and that scared me. They were tired, and I wondered how long their shifts were. I could also see that they were trying, and I could forgive the doctor who didn't know what TN was, barely.</span><br />
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Since that stay in hospital, I didn't really have much faith in the system or the doctors. There were thousands of people coming through the doors of the hospital every day, and most of the patients needed their help more that I did. They didn't remember names or faces, did they? </span><br />
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When I sat in the appointment room to see my neurologist last week, I expected the usual speech. "We'll increase your meds etc... and see you back here in three months." I was shocked that the doctor actually remembered me. He wasn't just saying that, he knew specifics about the case. I went over the usual stuff, and then he called his boss, the neurologist. I will say this, I was treated very well. They both listened to me carefully, and made some observations. They were the usual ones, but the point is, they made the time to listen and give advice. They all wanted to see what the neurosurgeon thinks and take it from there. I would rather honesty any day. As I have said above, my appointment with the neurosurgeon went very well so my faith in doctors has been restored... well for the moment. </span><br />
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<span style="font-family: Verdana, sans-serif;">I have learned a lot since my initial diagnosis with Trigeminal Neuralgia. The most important thing is don't give up, and don't sit idly by and wait for a magical cure. I went to A&E when the pain spiked (well I was made go, but you know what I mean.) I sat in A&E and waited for hours and hours each time to get help, because that is my right. I nagged the doctors for appointments, and I often nagged their secretaries for cancellations too. The severity of my case helped push things along, but making the odd phone call, or sending an email can help. </span><br />
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Don't sit at home in agonising and unrelenting pain. I know TN pain is agonising and never ending, but when the pain spikes, go to A&E if you can. Just because our pain is invisible, it doesn't mean we shouldn't have access to the medical care offered to everyone else. There are also going to be doctors and nurses who have never heard of TN, I simply tell them to "Google" it, and I tell them I have a huge file and give them my consultant's name. I get no more moronic questions after that. There are also fantastic print-out's that can be obtained online (not wikipedia, although it's fairly accurate). </span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_oLhvR2akvGTCCTiUyJqFO9K8NZuNYGqhQ-jNeeUlXoIR7irKzi86r7qWnnAXLzA_v-n9iw-6-l-7tg-2YhlqPW-dtdAwTfwCeCqepBNikOrNQwHjaGUgzpYy1zFuahzQGVeVil3OfFA/s1600/7aeb634fa2725283f932f22e2a9350cc.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_oLhvR2akvGTCCTiUyJqFO9K8NZuNYGqhQ-jNeeUlXoIR7irKzi86r7qWnnAXLzA_v-n9iw-6-l-7tg-2YhlqPW-dtdAwTfwCeCqepBNikOrNQwHjaGUgzpYy1zFuahzQGVeVil3OfFA/s1600/7aeb634fa2725283f932f22e2a9350cc.jpg" height="142" width="200" /></span></a><span style="font-family: Verdana, sans-serif;"><br />
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<span style="font-family: Verdana, sans-serif;">So I am hopeful at the moment, despite the scorching burning pain and thousands of shocks and stabs I have to cope with daily. </span><br />
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Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-34864874085354684592015-02-22T22:09:00.001+00:002015-02-22T22:09:40.460+00:00Worst Pain Ever<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;">Since my last post, I have suffered through the WORST pain I have ever felt. I don't know what's going on in my skull, but the pain is terrible. </span><br />
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My meds are increasing all the time, so is it weird that the aren't working? Or, how much pain would I be in if I wasn't taking anything? This is not a question I want to answer.</span><br />
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I try to rest as much as I can, I have tried to get out of the house and do stuff and I have tried to push the pain away. It's impossible. I thought if I got out of the house perhaps the distraction would help. I can tell you what happened. I walked like a drunkard, the world was spinning around me, and the pain was even worse! My eye was twitching and I looked peculiar. I have a blown pupil on my right side (my TN side is my left). When I am in a terrible storm of pain, the pupil difference is obvious. Sometimes when I wear my glasses it isn't as noticeable, but I can't wear them now as they hurt my face. So I can't see very well.</span><br />
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Considering I may not find a solution for quite some time, I have to live my life. I am trying to find a way. I hate being locked inside my house for days at a time, especially this time of year and the fucking wind is my mortal enemy. I hate being unable to work, and I despise being dependent on family to take care of me. </span><br />
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Not too long ago, I was a worker bee. I loved working, even when I changed careers. I thrived in the workplace and I always envisioned myself as having a good work ethic. I want that back. </span><br />
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I know there are people out there suffering so much more than I am, and I hate to whine. </span><br />
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I am trying not to take that fecking Oxynorm. It doesn't make any difference, but it does help me sleep for a few hours. I don't think that is what Oxynorm is for though. That's another thing, I don't get a good nights sleep anymore. It's just ridiculous, and there are no quick answers. </span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span>Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-19617998623498928982015-01-02T19:39:00.000+00:002015-01-02T19:40:21.277+00:00Pain, Pain and More Pain.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgueynrCVS4jxGioC5fVce1Ruqj97_9-iJQsM7Z8Mb06afs8iOC5MSqUP0V8zP5hG46YH8AUtnLvt4Su5NMelarYmMNZvi4rYmreE_HO7FkU6Cw-AZF9U2XYjghB0uhTHQl5GJx-PufzAc/s1600/proxy.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgueynrCVS4jxGioC5fVce1Ruqj97_9-iJQsM7Z8Mb06afs8iOC5MSqUP0V8zP5hG46YH8AUtnLvt4Su5NMelarYmMNZvi4rYmreE_HO7FkU6Cw-AZF9U2XYjghB0uhTHQl5GJx-PufzAc/s1600/proxy.jpeg" height="200" width="156" /></a><span style="font-family: Verdana, sans-serif;">Well Christmas has come and gone and Santa failed in relieving some of my pain. I was such a good girl this year... so why did he forget me?</span><br />
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<span style="font-family: Verdana, sans-serif;">Anyway, I ended up in hospital AGAIN just before New Years. Now anyone who reads my blog knows that I despise hospitals so that is an indicator to my state. My trigeminal neuralgia pain hit entire new levels. Every single fecking time I say that this pain cannot get any worse... I am proven wrong. The pain intensity is inhuman and I get absolutely no low pain moments. I am also constantly dizzy and faint, and I get a sick feeling in my stomach and tingling pain all over my body. My left arm and hands are either numb, sore or completely dead. My GP was concerned about the new symptoms so he sent me to Beaumont. </span><br />
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<span style="font-family: Verdana, sans-serif;">I don't know how much more of this crap I can take. After an ass numbing 9 hours in steel chairs and examinations by two nurses and three doctors, the solution was increased meds and a prescription of oxynorm. Now, I know for a fact that opioids and analgesics have no effect on my pain, so why did the young neurology doctor in Beaumont write me a prescription for oxynorm? Well I think that the young man hadn't a fecking clue what to do, and I actually felt sorry for him. Trigeminal Neuralgia is rare, so I can forgive him for not knowing about the condition. He does work in the neurology department though so he should know something about neuropathic pain? </span><br />
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<span style="font-family: Verdana, sans-serif;">He wanted me to stay the night and see the consultant in the morning, but I refused. Spending the night in a chair without a blanket or pillow causes more pain and distress. I am not exaggerating when I say that it is actual hell. I also had no interest in seeing the consultant for about two minutes until he moved onto the next patient. The bottom line is this: I need something to be done. I can't wait for months or years while my entourage of doctors use me as a walking and talking guinea pig and they don't care that my quality of life is slipping away. </span><br />
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<span style="font-family: Verdana, sans-serif;">My Tegretol is being increased and I am feeling worse not better. I am very sensitive to medications and the tiny amount of oxynorm I am prescribed knocks me out. </span><br />
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<span style="font-family: Verdana, sans-serif;">Men have walked on the moon, atoms have been split, and yet there is no cure for the most painful condition known to humankind. What the fucking hell is going on? I know that I am not alone, and that is frustrating. I am due to see my pain specialist later on in the month and a neurosurgeon in March. Let me say here that I will not paint on a smile and agree that their "solutions" are good ones. I am in pain, I am angry and I am sad. I can hardly walk in a straight line! I am only 29 years old. Enough is enough.</span><br />
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Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-13191363576061492942014-12-08T19:05:00.001+00:002014-12-08T19:05:20.005+00:00Winter and Coping <div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;">Winter is here for definite and let me tell you it's having some effect on my trigeminal neuralgia pain. </span><div>
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<span style="font-family: Verdana, sans-serif;">The wind and cold triggers my TN to unacceptable levels. Last year I could wrap up in a scarf and try to cope with it. Scarves are not so easy to wear at the moment. The material against my face hurts a lot, but the wind and cold is worse. My symptoms seem to be growing and growing. I never minded winter before, but now I hate it. </span></div>
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<span style="font-family: Verdana, sans-serif;">I have this condition a year and a half now, and I really admire those who have suffered with TN for years and some have suffered decades! How are they doing it? </span></div>
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<span style="font-family: Verdana, sans-serif;">I try and take each day as it comes. Every time I wake up and the pain hits, it's soul destroying. I am also an insomniac. Why is everything worse during the night? Is it the fact that there are fewer distractions to take my mind off the pain for a while? I sleep about three or four hours a night if I am lucky, It's not enough, but napping helps during the day.</span></div>
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<span style="font-family: Verdana, sans-serif;">My love of the written word has been my ultimate distraction technique. When my vision is dodgy I still try and read as much as I can, although it is difficult. I love music, and although I can't put an earphone into my left ear and I have to keep the volume low it helps. </span></div>
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<span style="font-family: Verdana, sans-serif;">I have tried to exercise a little too. I am not able to work at all so I am at home all the time. I hate it, but I am trying to keep going. Exercise sometimes triggers intense pain. I can't understand it. </span></div>
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<span style="font-family: Verdana, sans-serif;">The migraine element is really packing a punch. I have to try and sleep propped up on four pillows. If I lie down flat, the pressure in my head and the pain running down my arm is frightening. I am still waiting to see the migraine specialist, and hopefully he can help. If the migraines are controlled, it might help me cope better with the TN. </span></div>
Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0tag:blogger.com,1999:blog-4231770231129260917.post-91285986583058776912014-11-13T21:41:00.002+00:002014-11-13T21:41:35.472+00:00Trigeminal Neuralgia Hell<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEWRL7FMnU2JkCjwF1doTNAaL-A92IgQ6iC8rzr4Br8YtUnEm5B2_ouxCAVRrYMKW5B7B-xoYfC4EMK94wvoR6TDkTeG_jd2bER7ctzUjTDZB7r9XXWyEYhNRG5Z8qqJE-4q3Pg6Zy9hI/s1600/10176210_681677091870624_3323948384864551142_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEWRL7FMnU2JkCjwF1doTNAaL-A92IgQ6iC8rzr4Br8YtUnEm5B2_ouxCAVRrYMKW5B7B-xoYfC4EMK94wvoR6TDkTeG_jd2bER7ctzUjTDZB7r9XXWyEYhNRG5Z8qqJE-4q3Pg6Zy9hI/s200/10176210_681677091870624_3323948384864551142_n.jpg" width="200" /></a></div>
<span style="font-family: Verdana, sans-serif;">The past few weeks haven't been easy at all. This pain is getting worse, and every time I think to my self, "This pain can't get any worse than this," I have been wrong. </span><br />
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<span style="font-family: Verdana, sans-serif;">Seriously wrong. </span><br />
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<span style="font-family: Verdana, sans-serif;">I know that Trigeminal Neuralgia is documented as the worse pain known to humankind, but I am telling you living with this shit is pure hell on earth. </span><br />
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<span style="font-family: Verdana, sans-serif;">This pain is relentless. It's like there is battery acid eating through my face, as well as an ice pick stabbing me every couple of minutes. I will say this again... this pain is constant. Oh, and lets not forget the electric shocks. I have said this before and I will say this again, I am sick of it. </span><br />
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<span style="font-family: Verdana, sans-serif;">I am on five different types of meds, and I can't really take anything else. Painkillers are useless, but sometimes I take them when the pain gets too much hoping that they will help. They never do.</span><br />
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<span style="font-family: Verdana, sans-serif;">Another thing that pisses me off is this; being told that "it could be worse!" </span><br />
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<span style="font-family: Verdana, sans-serif;">Seriously are they mad? It goes to show how little people know and understand about TN. Imagining such pain must be difficult, and I know that before this condition hit me, I wouldn't have understood it myself. Keeping friends is so hard. This condition has had such an impact on my life that going for a coffee, or going to the cinema are impossible most days. Leaving the house is hard, and there are days when I haven't got the strength to get out of bed. When you cancel plans, I have found that the vast majority of people lose interest and I can't blame them. If I didn't have such a great family, and some awesome TN friends, I would be lost. </span><br />
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<span style="font-family: Verdana, sans-serif;">I am not lazy, but I feel that I am when I am unable to do the simplest of tasks. Take today for example;</span><br />
<span style="font-family: Verdana, sans-serif;">I could barely get out of bed. Moving hurt like a bitch, and every time I moved my head I felt a wave of nausea. The best I could do earlier is put on my favourite TV show, turn the volume down, close the curtains and try and lie down until it passes. This makes me feel like a lazy slob. </span><br />
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<span style="font-family: Verdana, sans-serif;">I just want this pain to ease a bit, wanting it to end is too much of an ask, but maybe the doctors will figure out some sort of a cure. There are new and wonderful things being accomplished all the time, so fingers crossed.</span><br />
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<br />Sarah Heaveyhttp://www.blogger.com/profile/08032632749391363086noreply@blogger.com0