Some events of the past week or so have given me an opportunity to examine a part of my life that has been a frustrating puzzle for nearly 20 years--and now I think that it is time to disclose some things and try to unravel a bit of the puzzle and hopefully find some answers.
As you know, my Topamax was lowered to 75 mg/day due to ocular side effects. I had one very bad migraine last week after eating cheesecake on Tuesday--cheese of any kind is a suspected trigger, and if I eat cheesecake at any time in the future I think someone needs to send me for treatment of masochistic tendencies!
When I discussed lowering the Topamax dosage, I told my doctor that I planned to restart my nutritional supplements: a multivitamin, magnesium which has helped with the asthma and kept me off inhalers, and three amino acids and quercetin for my eyes. I also wanted to restart CoEnzyme Q10 for the migraines in case the lower Topamax was insufficient. He didn't object but did say that supplements can interact with meds. I agreed not to take the ones I had been taking to lower cholesterol--I had seen somewhere a warning not to take more than 200 mg of niacin per day and my supplement was an 800 mg capsule. The other things I had taken were intended basically to flush things out of the blood, so I figured it wouldn't be wise to take them with Topamax. I put the "do not take" stuff all in a separate place so that I would not mix it up. (Some of you know where this is going, don't you?)
Then I caught a cold. It was just a little one and I thought I'd sleep better if I could breathe--CPAP and nasal congestion are not friendly to each other. So I took Sudafed for three days. Not really a big deal. I did get that wonderful night's sleep on Saturday night, and I felt great on Sunday morning. There was just one problem. I was sort of transported back to 1986 in terms of my health. I experienced five episodes that were very familiar but which my neurologist has passed off as part of my migraines. I don't know anyone who has five migraines in a day! There is only one other thing doctors have used to describe these. I'm not afraid of it, but when my testing comes back supposedly normal the word goes back into the taboo vocabulary. Seizures.
I had become suspicious on Saturday that I may have switched out two of my supplement bottles and that I may have been taking niacin instead of L-tyrosine. So I did not take the suspicious pill on Sunday. But Topamax takes time to build back up in the body, and decongestants also lower the seizure threshold. On Monday I was feeling better, but my suspicions were confirmed by the absence of Topamax side effects--the fact that I could drink a root beer and enjoy the taste did not escape me! Dad read the bottle and confirmed that I had indeed been taking 800 mg niacin! So I got rid of it. No more opportunities to flush my meds! I had two episodes yesterday and one or two very small ones today, and I'm now enjoying the metallic tasting water and complaining about being hot and my flushed face. I feel much better, including the side effects!
The positive aspect to all of this is that I may have finally gotten the opportunity I need to document some episodes in detail. I have no idea if my neurologist will pay attention to my five pages of description, but I'm going to find out next week. He still doesn't even know that I let the GP put me on Topamax, and I hope he will forego yelling at me about the glaucoma risk and listen to me long enough to understand that I considered it an acceptable risk since I already live with glaucoma and am used to managing it. What I want is a long-term EEG. I have no idea if it would show anything or not, but I want an answer. If I have epilepsy, I want to know. I'm not afraid of it, and I seem to have a dead giveaway here: flush the antiepileptic and I have five seizure-looking episodes in one day. If it looks like a duck and quacks like a duck...
Normally when a person is diagnosed with "nonepileptic seizures," it is after meds have been tried and EEGs are normal. When I was first tested, no antiepileptics were tried. The EEGs were normal except for one which was dismissed because I was blind, so I was diagnosed with "stress" and sent on my way. I never got meds until ten years later, and then only because I begged for a rapid cycling diagnosis that the psychiatrist didn't even believe was accurate. Getting Depakote was not easy, but I tried hard because it helped. I couldn't tell anyone why I really needed it because my EEGs were still normal and supposedly I just needed counseling. Well, why wasn't all that counseling working??? It certainly helped where it was needed--and there were some areas. I did discover that I had a tendency to dissociate and that I also have panic attacks. Both are under good control: the dissociation has been for quite a while and the panic attacks have been controlled for a few months now. I'm nice and mentally healthy, or at least as much as the general population is. Everyone has some degree of psychological distress at some point in life. I can hold down a job (assuming I get hired in the first place), keep up in school, take care of a child, keep my home reasonably clean, keep myself healthy, communicate effectively, maintain my personal safety... I could use some general improvement in my interpersonal relationships and emotional stability; but these aren't things that seriously impair my daily life. And if I was experiencing psychogenic seizures, they wouldn't suddenly shoot up in number because I unknowingly took the wrong vitamin and flushed all the antiepileptic out of my body! I've been walking around accepting the supposed fact that I'm just crazy for 20 stinking years, or that these are part of my migraines or just something strange about me. But if this has a name, then someone please be truthful with me and give me the freedom to accept it and live with it and take the meds for it, normal EEG or not! The meds are helping me! Give me the right to take them! I know I can have the Topamax because of the migraines and the rapid cycling; but if it controls those and not these, then I need to be able to discuss additional treatment options for the right symptoms. I can't keep settling for partial control, and I can't lie and say that my migraines or my mood swings aren't controlled when they are.