Lately, I have been absent for a few weeks, from my blog, instagram, life due to a trigeminal flare pains that have been taking over my every waking thoughts. And, after more trigeminal pains and flares, I have finally had an appointment last week and discussed the trigeminal treatments with my pain specialist again. But I'll elaborate in detail a little more below.
First I want to address the fibromyalgia pain, which has thanks to the transcranial direct current stimulation (tDCS) miraculously has come down to a 3 out of 10 on a pain scale. Which means that it is so tolerable that I barely even notice that I have it, till night time when at its worst, it's 4 out of 10 which is annoying but bearable. Basically the fibromyalgia is barely there without any medications. Thus, the tDCS is very successful in taking my fibromyalgia in the direction of a possible remission.
When I went in this past week I saw my Dr and his intern and I handed them my iphone with my long list of notes with examples of scary memory loss symptoms. In the time I've been on Topomax (June-August) it seems it's turning me into an alzheimer's patient, for example: I only recall fragments of conversations, and the fragments are getting smaller (Ex. that my husband will start learning accounting, (not the it starts tmrw, not who will teach him, not that that I have to make his lunch, not that he goes at 7am instead of 9am) I've started forgetting something everytime I leave the house, forgetting pills, Forgetting words (like ipad), extended family members names, and worst forget what we're talking about halfway through a conversation. In spite of my long list of memory problems the Dr. decided that while it is horrible that I have run out of pharmaceutical options the only drug that is left to try most likely would cause the deathly allergic reaction rash that I got from Tegretol called Stevens-Johnson syndrome. It really sucks when you're getting worse and running out of options and you know it’s only a matter of time before life and pain catches up with you.
Thus, we agreed if tDCS is not bringing the pain down it may be that the pain is degenerating, or that the pain center is not able to be electrically/chemically turned down as it could be a physical cause like an artery or vein wrapped around the nerve. Its time to face facts its a degenerating disorder thats shockingly degenergating.. I had looked up a neurosurgeon in case and got a referral to him, knowing this will now be a longer road toward riskier options.
Although as I type that, I feel the trigeminal pain coursing through burning the side of my face. An example of this type of pain is that it feels like: It's stabbing my left temple, (okay stabbing is a minor word at this point..) when the pain comes on you should picture the big electrical cords attached to telephone wires, now snap one in half, it feels like someone is stabbing my face with a broken end of one.
It’s flared again and is still a daily 8-9 out of 10 most days the normal is just unbearable and the nights are excruciating intense zapping and burning pain. Its on my mind night and day, and I'm always thinking about it…the way wind touches my face, if there is AC in the cars or stores. Everything effect it, right down to the way my eye muscles blinks and pulls on the nerves and hurts, both my temples throb all day, my jaw if I talk gets sore from talking, my gums hurt if I brush my teeth. Sometimes I forego eating cause its too painful, if I can eat, I debate what food I’ll eat if it’s too hard and chewy I won’t eat it, because it’ll hurt the pulling of the muscles on the nerve etc.
A few nights ago, I don’t know why maybe its just the progression but I woke up with tears streaming down my face then searing burning electric pain like my face was hot and burning off as the Trigeminal nerve hits me. It was then I realized I had been gritting my teeth while I slept. And, then I had to get the baby that was crying.
After meeting with my specialist, we talked about the left foot problems, memory problems, my worsening hand tremors, and still my Pain specialist decided to keep me on Topamax because the pain relief out weighs the damage. Instead Im now adding a new magic trick to my drug routine of taking 2 horse sized pills 2 times a day for memory boosting.
It was agreed that at this point the treatments are not affecting the trigeminal nerve. Which really sucks! Its depressing and means the nerve has probably degenerated on a physical level, or something requiring brain surgery is going on, thus the pain sensitivity can not be turned down on a chemical/electric level. Which was really hard to hear. I got a referral to a neurologist who is familiar with trigeminal neuralgia at UBC in hopes of going on to the next stage of treatment which is looking unavoidable surgical, I’ve run out of pharmaceutical options and am getting worse.
They say to limit stress with pain disorders that its really helpful, and pain levels go down. Yet, decisions as I get older get harder to make: deciding which pain killers were safest during pregnancy while still medicating terribly painful disorders, deciding wether or not to keep my appendix while being pregnant and uncertain of infection, deciding when pre-eclampsia/HELLPS got too bad and it was time to induce and be making choices for NICU babies, deciding which home to buy, deciding when to go to the hospital when allergic to a medication, then deciding to do a modern electric therapy to try and avoid brain surgery….. Is the next one which brain surgery? I wasn’t prepared for this so I suppose in the great words of Franklin D. Roosevelt, “When you reach the end of your rope, tie a knot and hang on.”
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