Tuesday, 26 January 2016

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



10 comments:

  1. Hello there, i have been following your blog. I myself have TN...ive had it for about 7 yrs...im taking gabapentin, tegrol, and amitpriline, anyhow i have a web sight that i always go on its called www.livingwithtn.org
    You have to sign up and become a member its free of charge but it will help :)
    Praying for a pain free night!

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    1. Thank you for your comment, I will indeed have a look at your website!

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  2. I am so sorry to hear your stereotactic radiosurgery did not do what you hoped it would. I am 25 and am 16 months into my battle with ATN. I finally found a combination of medications that makes life livable. Severely uncomfortable, but livable. I know what you mean about dreading the future. Two years ago I was the type of person who planned out hundreds of goals for the future. Now I get mad if anyone asks me to make a plan for next week. Hope is too painful when my hopes don't work out over and over again. I dread the day when either my pain gets worse, or I build up a tolerance to the medications, because once again, whatever life I am building now will be over. It is super scary, and I wish I knew how to overcome it, but I don't. I wish you all the luck in the world. If you are still alive and breathing you are a stronger person than most will ever be! <3

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    1. We are warriors! Living with this condition is hard, so hard it's almost impossible. Keep going, you are so strong. If you are interested, there are tons of support groups on Facebook. Everyone is welcome and someone will answer you 24/7. If not you can contact me anytime ☺

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  3. Hi my husband has been dealing with trigemenal neurolgia for almost 2 years and it's been very awful journey!!! He is finally getting surgery this Tuesday to help him, fingers crossed!!!! I believe it it called MVD microvasicler decompression. It took us many neurosurgeons to get here. Have any of you heard of this surgery? It has a60% chance of fixing it completely .

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    1. I have heard of the MVD and it does work for so many people. I really hope that it works for your husband! As I have atypical trigeminal neuralgia, my neurologist and neurosurgeon are reluctant to do it. I think it will be a last resort for me. Good luck again and please let me know how it goes!

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  4. The Information given on causes and cure of migraine is quite awesome. Do visit web health network for more information on Migraine it's causes and cure.

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    1. I have to agree. Your family suffers a lot too. I Once walked into my sons room and caught him crying softly. My pain is his pain. people don't understand this disease. Because we don't have a gaping bleeding wound......
      All I know is that the operation to decompress my nerve worked. But the dentist changed all that the moment he drilled my amalgamate fillings and the mercury entered my brain.
      People should also see a heamatoligist, immunoligist. Sometimes trigeminal neuralgia is caused by a virus, or bacteria. Epstein barr is also responsible for encouraging neuralgia caused by virus/ bacteria by weakening the immune system. Dont stop searching and looking. Try and remember what you ate/ drink that day or the day before if the pain is worse. I am the best doctor because no GP or specialist helped me at all. Because I am aware of what I eat and drink. When I visit friends or family I know that I cannot control my environment. I went to Swakopmund, Namibia for some time. They have desalinated water there. Full of sulphite and chlorine. The sulphites binds with copper. Copper binds with fat......your brain is fat. Copper steals your zink. Levels become too high. Life is one big biochemistry . And I learned to be careful of what I.put in my mouth, and lungs. Stayed in a log cabin a while ago. The creosote immediately pushed my pain levels up. I also wish I can find a permanent solution. But by watching my intake, I manage to keep my pain levels low. Alcalizing your body also helps. In the case of a viral/ bacterial infection. Tickfever, shingles, herpes can cause neuralgia. You probably know that. And a virus/ bacteria dislikes an alcaline environment. I had 19 years to find all this out. I hope and wish with my whole heart that my fellow sufferers get a solution.

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    2. Notechbaby16@gmail.com27 October 2017 at 08:22

      I am scared to think I will live the rest of my crying silently and in pain. I am a womyn of faith and I will work as all who suffer with this debilitating condition to be heard!

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  5. As a sign of gratitude for how my son was saved from fibromyalgia , i decided to reach out to those still suffering from this.
    My son suffered fibromyalgia in the year 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always complain of joint stiffness, and he always have difficulty falling asleep . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to fibromyalgia . I never imagined fibromyalgia has a natural cure not until i contacted him and he assured me my son will be fine. I got the herbal medication he recommended and my son used it and in one months time he was fully okay even up till this moment he is so full of life. fibromyalgia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098765@gmail.com on how to get the medication. Thanks for reading my story

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