Thursday, 2 June 2016

Summer v's Trigeminal Neuralgia

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. 

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.

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! 

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. 

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. 

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. 

9 comments:

  1. Sarah, I could have written your words today, I identify with so many things you have said..I have been following you posts for a while and feel I need to get in touch, as though maybe we could be a great support to eachother..I'm 38 female, married mum of 2, live in Australia, diagnosed bilateral TN1 and TN2 for the past 4 years and progressively becoming worse..constant burning and stabbing pain, if it's not one side its the other..pain can be be hard to ignore now..specialists here are few and not as knowledgable as the US... I do my best to have a positive outlook, would welcome a chat with you..discuss meds that have helped or not, upcoming meds becoming available etc..Mel my addy dragonmelly77 at gmail dot com

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    1. Hey,I'm almost 50 and I also bilateral trigeminal neuralgia. I am also Australian. My pain is extremely similar to yours except it is ice cold pain. I was diagnosed in 2010 after having these pains most of my adult life. My GP also tried me on Tegretol but it amplified my pain to the point that my Rheumatoid levels were 253. I have been told that 5 is considered a normal level. So no more Tegretol for me. During winter my neuralgia is tolerable, but as soon as the weather starts to get warmer it becomes unbearable in the extreme. I have been known to punch furniture in frustration and pain. Now I'm no stranger to pain as I have six children and I have told my GP many times that I would rather go through childbirth than have to suffer with this. My face becomes so cold to the touch you would think that I had a mouth full of ice. My GP originally sent me to a dentist because I had ground my teeth so much in my sleep from the pain that I had cracked one of my molars into three pieces and he thought that my pain was from my tooth, WRONG!!! So after over $5000 in dental work done. He actually started to suspect trigeminal neuralgia. Oh, by the way, if you do need to have any dental work done be prepared for your neuralgia to play up intensely. It did for me and I was on Endone for months. My pain has gotten to the point we are considering moving to a colder climate to help manage my neuralgia and in Australia that is nearly an impossible ask. So, for now, I am existing on a schedule 5 pain killer. My youngest son is only 19 and has started exhibiting the same symptoms as me, including the ice pains. BTW he has perfect teeth. I almost forgot, my GP also sent me for a biopsy to investigate whether I may have Giant Cell Arteritis, which came back inconclusive. GREAT!!! Just what I need, something else to worry about, the chance that I may go blind still looms over me. THANKS DOC!!! The reason he was investigating for that was that intermittently I get blurry peripheral vision when I have my neuralgia attacks. Can anyone identify with any of these symptoms? Jenny

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  2. Seasonal change does seem to trigger mine. I am 48 years old, male. Symptoms started two years ago. Two weeks of July I did not leave the house. Then it stopped. Started again Dec 23. Went for weeks with varied levels of attacks. Finally got to see a neurologist and at that time started on 200 mg of Tegretol. It took about to weeks but the attacks stopped. That was Feb. In August it started again, meds increased to 600mg a day. Took a while but stopped the attacks again. If I miss a dose. I get "reminders" as I call them.
    I cant say for sure the seasons changing causes mine to trigger. Cold or wind didnt trigger mine. Brushing my teeth, potato chips, cereal, touching one certian spot above my upper lip on the right side or just no reason at all.
    Was the Tegratol not working for you? I question as to why they are backing you off of that if it was working.

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    1. Hi Jeb67.
      The reason my pain specialist wanted me to come off tegretol is that my pain has been at constant extreme levels for over 2 years, with the pain levels gradually increasing despite whatever medication I am on. I was on 1600mg of tegretol. He thought that as tegretol didn't seem effective, it was worth taking me off it and starting me on something else. I started to come off it and the intensity of my pain went to pain levels I never thought possible. I started taking the tegretol again, but only 1200mg. I was hoping that the pain would decrease. I am on several other meds, so is the fact I came off tegretol to blame for my increased pain? Is it a coincidence? Is it the time of year? Sadly TN is such a mystery that I have no answers.

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  3. Sarah, I just found your blog. I am a 59 yr old female, South Jersey, 5 years into this disease in US. Been to endless Drs, Surgeons with no result. NO MEDS ever worked. I pray, I research, I pray. Only the people that it affects know the PAIN we endure on a daily basis.

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  5. Hello. I just stumbl across your blog today. I had a nerve block on April 29th, and on June 11th it wore off in DRAMATIC fashion while I was showering getting ready to go do something.

    I have atypical TN primarily on the left side of my face, caused by having MS. The only time I notice the MS symptoms anymore is when the nerve blocks work.

    Most of the meds you mentioned taking now or in the past made me sick. Tegretol works, but only the chewable because the pills make me seem drunk, but less fun!!! Tegretol, at the dose I am supposed to take, makes me sleep, a LOT. 20 hours a day usually and I am so tired when I wake up.

    I have felt like giving up every day for a week. The pain is so out of hand its making it impossible to live even part of a normal life. My life is defined by when I take pain meds, and when I move from recliner to bed & back.

    I can't say the seasons changing makes my pain better or worse. I know extreme temperature in either direction makes it worse.

    I just hope for a resolution or cure soon, because people were not meant to live like this. My only solace is that its not genetic so my girls won't likely suffer through it.

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