Thursday, 22 March 2018

Day By Day, Hour By Hour.

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. 

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. 

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?? 

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. 

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. 

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. 

16 comments:

  1. Please know that you are not alone :) I am a young person living with the same pain so I understand your struggles. I have had the pain for 2,5 years and it has been a life changing experience. I am slowly trying to build up my life again and learn to enjoy the small things in life.

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  2. I just wanted to say you are a superwoman and I salute you for your incredible strength. I know you have probably researched every last method of treatment but have you tried Chinese acupuncture? It may take a while but it could provide you some relief. Also guided meditation tapes on pain relief.
    Life gives us such difficult tests yet we still manage to hold on to hope because humans are just so strong. For me I just don’t want to give up because I have my loved ones and I still pray to be able to do some of the things I want to do while I can. I’ve asked the why question many times but sometimes I just imagine myself bearing this pain perhaps for my loved ones, and it gives me a bit of relief in that sense. I’m not religious but it does make me feel better if I’m bearing sins for my family.
    Anyway I sincerely hope you find some relief for your pain. There are also a supplement called quercetin which may help, do look into it. And myelin sheath support supplement.

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  3. I have burning feeling on my right side tongue and cheek. It happens for months since nov 2017. It never stops. The pain is constant. I dont know if it is TN or not but must be something wrong with my nerves. I want to see doc but i'm too afraid with the result. I just told myself, i will bear it for my kids to see them grow. I'm tired crying, but i still do it, as constant as the pain. Hope it only a dream, and i will wake up soon.

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  4. I have a few questions for everyone who bravely posted their pain. What medications is everyone taking for their pain? I take 800 mgs of Carbamazepine, which is now a fluffer for this pain, and as I post this message my right nostril feels as if it is on fire and every breath is filled with pressure and pain!

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    1. Yes, I also take Tegretol 800mg. If masks the pain for a while.

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  5. I’ve just been told I have this. I just started to get the pain but it was only really bad for 2 weeks then 95% subsided. It will come up around my left eye making it water and blur. I have read a couple of your posts and my heart goes out to you. For my pain I am starting with just plain Advil. I have Tylenol 3 for days that might get worse. Thank you for writing all this for others to read and get an idea of what to look forward (not) too.

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  6. Hi. My dad is 79 years old and diagnosed with TM. I spent 11 days in the hospital watching him go through the most terrifble pain. I wish I could take his place. He screams in pain. The meds don't seem to help. What are the surgeries that I read about? No one talks about them. This is new to us. I hate it but I have to learn about it. I am my dads caregiver. My strong daddy is now in tears.

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    1. I want to console you who suffer from this curse. I have spent hours, days, months, and 5 years researching the curse we share. My most recent find is 5 famous people who have and have had a surgical procedure called MVP(Microvascular Decompression). I will reply as soon as I can stop crying from the horrific pain throughout the right side of my face, whivh now causing vision problems in my right eye. I will spend as much time fighting us all. TN has stolen the vibrant lives we all had and I want to find a solution for us all.

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    3. My father is 89 years old and had suffered many years with the pain of TN. He had multiple treatments of gamma knife, radio frequency, glycerol and lots of drugs - all of which were only moderately effective. He has a fairly bad case of TN. It was excruciating to watch him suffer. He went to the "best" doctors in New York City for treatment but ultimately they were not able to meaningfully relieve his pain. He also went to pain management doctors in New York City who were similarly not able to provide him relief. As almost a throw away at the end of an appointment where my dad was pressing for any alternatives, one doctor mentioned a surgeon on Long Island who might be able to help him, but the doctor (who was supposedly an expert in this field) did not remember his name. After some research, we connected with this doctor on Long Island - he is a neurosurgeon who performs Percutaneous Balloon Compression. We were able to get my dad in fairly quickly (he was essentially unable to function due to pain) and he had the procedure done. The amazing thing about the procedure is that it is done on an outpatient basis (even thought he is 89 years old) and, unlike gamma knife, the relief is immediate. No waiting for the pain relief to kick in. And no pain from the procedure itself. It is incredible and to this day makes me quite angry that no expert recommended this procedure to my dad even thought he suffered for many years. The only downside is that he has some residual numbness on his face, but given the pain he was experiencing it is an easy trade off. Sometimes you have to repeat the procedure which my dad just did yesterday (he was starting to experience pangs of pain) and he is pain free today and back to his regular active life. I can't recommend this doctor and procedure enough. Here is his contact information: http://jeffreyabrownmd.com/trigeminal/balloon.html. I hope this post brings relief to other sufferers out there.

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  9. As a sign of gratitude for how my husband was saved from neuralgia, i decided to reach out to those still suffering from this.
    My husband suffered neuralgia and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from neuralgia. and so many other with similar body problem, and he left the contact of the doctor who had the herbal cure to neuralgia. I never imagined neuralgia has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life.neuralgia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .

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  11. I have been in pain for weeks now. Still trying to work , asking for prays to keep going. Praying for myself. It is getting harder as the 5th year approaches. I don't know how much more I can take. I am tried. So tired of pain day in and day out. My Neuro MD suggest the Gamma knife, I am not so sure. 5 years of pain my quality of life is shriveling. I push and push so my kids do not see me give in. I am losing the battle. Even now as I write tears are running down my face. I want to scream!!!!

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