Too Much Pain

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. 

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. 

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. 

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. 

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. 

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> 

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. 

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? 

Hour by Hour, Day by Day.

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. 

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? 

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. 

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. 

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. 

Light Up Teal for TN - TNNME

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?? 

Petition to the World Health Organisation - TNNME- Trigeminal Neuralgia Petition to the World Health Organisation, please sign and share. 

We Need A Cure -- Seriously.

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. 

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. 

Why can't the medical community get up off their arses and find a cure? I do know that the http:Facial Pain Research Foundation 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. 

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. 

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.

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! 
TNnME - Petition to the WHO

Stereotactic Radiosurgery --- Finally.

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! 

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.

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. 

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. 

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. 

Here is a link where Benefits and Allowances are explained fully. 

Chronic Pain Ireland - Benefits and Allowances


More information about Stereotactic Radiosurgery can be found here;

Stereotactic Radiosurgery - Mayo Clinic

Pain, Pain and Even More Pain!

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. 

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. 

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. 

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!! 

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. 

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. 

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. 

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. 

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.

Migraines and Masks

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. 

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. 

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. 

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. 

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. 

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. 

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. 

Pain and Anger

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. 

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. 

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. 

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. 

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. 

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. 

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. 

Stereotactic Radiosurgery (Gamma Knife)

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.

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.

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.