Wauggh . . .(why?)

I’ve been away for a bit from the forum, because I’ve been so off my head. What’s scary is that we don’t know why, and won’t until, at the very least, I’m fully recovered. I hope that someone else has had experiences that will at least suggest a parallel.

I was originally diagnosed with atypical epilepsy, due to occasional absence experiences (reported to me by others; I’m not aware of them). Various meds were tried, eventually settling on carbamazine/tegretol. This didn’t end them, whatever the dosage, but they were relatively far apart, maybe 2 a month.

Then less than a year ago, additional problems brought on a diagnosis of Meniere’s. I started restricting sodium, and eliminated caffeinated beverages, chocolate, and I believe alcohol. I tried a hole in my eardrum and a couple of other things, to put me back into working condition. Before going ahead with surgery, I went for a second opinion, resulting in the MAV diagnosis. Now I eased off on the sodium restriction, eliminated even decaf tea and coffee, and started adhering to the elimination diet. Also started swimming increasing laps.

Symptoms improved vastly starting at the point when I accepted the first set of restrictions, and I started reducing carbamazepine dosage, in consultation with the neurologist who had prescribed it. Early this month, I got his go-ahead to eliminate the last bit of the carbamazepine. Within a week, the absence experiences rebounded with a thud, maybe half-a-dozen in the one day according to my wife. The first day I was aware of something wrong (Tuesday 6/18), I was en route to a meeting for which I’m pretty responsible (group sec’y), and spent an hour and a half trying to drive the half-hour route that I’ve taken many a time, before giving up. (I haven’t risked driving since.) I’ve also begun to feel weak, slept a ridiculous amount, had a tension headache most of the time, not been able to think clearly (at least not anything very sophisticated), had a sore gut, and I’ve forgotten lots of simple how-tos. For a while I felt very–and quite abnormally for me–depressed, albeit not the the point of suicidal ideation. (It would be nice to think that that would be just too alien for me to harbor.) I’m slowly getting better, but this is pretty scary. Even if I come back to normal, not being sure why this happened would feel like a sword over my head.

EEG was normal, and some blood tests were taken to eliminate usual suspects. My neurologist, my internist, my wife and I all hope that somehow it’s the result of going off the carbamazepine, and that as it builds back up in my system my function will be restored. I am also taking nortryptaline and lexapro, but that has not changed recently.

Does this sound in the least familiar to anyone else on the board?

Hi David,
was your epilepsy origionally diagnosed by a Possetive EEG?

jen

Hello David,

Hopefully this sounds like a bit of a no brainer and it’s the drug reduction that has cause this relapse. My experience is that if I gain stability with the condition then mess with my drug dosage, things can really deteriorate. I take propranolol. I was on 80mg and got too confident, thinking oh I feel much better - maybe I’m cured. I wasn’t, with a reduction all the old symptoms crept back. Same with food triggers, a number of weeks ago at easter (too many tasty things in the shops) I got over excited at the idea that I could eat chocolate again, went overboard and paid for it.

Now I am of the opinion that if it ain’t broke don’t fix it. I sometimes feel Dr’s are a bit trigger happy about telling people to eliminate a drug when their symptoms are stable. It’s understandable I suppose, why keep someone on a drug if they don’t need it. I think what you’ve found out is that you do and when you increase again you’ll be back to where you were.

I’ve never had absence experiences and have no idea if migraine could do this. However it sounds like the elimination of food triggers/addition of migraine drugs leading to an improvement means you have a migraine component. Maybe you have both epilepsy and migraine. I’m guessing it’s complicated by the fact that epilepsy drugs can be used to control migraine. Whatever it sounds like you have found a combo of drugs that work for you, so I’d stick with it. Sometimes another illness can trigger an underlying migraine condition. A guess, but maybe you developed epilepsy and this triggered migraine, which could explain why the carbamazepine alone didn’t stop the seizures, (the migraine and the seizures could be setting each other off) but the combo of changed diet, migraine drugs and an anti epileptic worked. The most likely scenario that happened in my case is that I got vestibular neuritis and this caused a small underlying migraine problem (that I was unaware of) to flare up and become MAV.

I do experience the most dreadful cognitive problems with my MAV. It’s far and away my worst symptom. My brain slows to a hideous degree and renders me befuddled.(A neurologist once told me migraine slows the brain and the exactly what it feels like.) It’s like being very stoned, or the mental equivalent of being sleep deprived for five days So I can totally relate to that. Your atypical epilepsy diagnosis is very interesting to me as although I do have migraine (I have severe photophobia along with other symptoms) my uncle has epilepsy and it’s something I’ve often wondered about in an atypical form.

I think sometimes from inside the experience it’s difficult to see what’s going on. From the outside what you have described looks clear as day - it’s the drug reduction, increase the drug and I’d bet the farm you’ll feel better, it might just take a while to get things back under control.

H

— Begin quote from “jennyd”

Hi David,
was your epilepsy origionally diagnosed by a Possetive EEG?

jen

— End quote

Hi, Jen.

No, and that’s why it was considered a seizure-TYPE disorder for years, with a tentative diagnosis of atypical partial complex epilepsy. I actually wore a headful of electrodes for days, in the attempt to nail down clearly epileptiform patterns, but unsuccessfully.

— Begin quote from “Hannah”

Hello David,

I sometimes feel Dr’s are a bit trigger happy about telling people to eliminate a drug when their symptoms are stable. "

Actually, Hannah, I have to plead guilty there. I was so sure that the new diagnosis of Migraine-Associated symptoms was it, based on the fact that the anti-seizure drug had not stopped the absences, but the diet had, and I had successfully lowered and further lowered the antiepileptic med, that I was happy to think that I would be able to get this chemical fully out of my system.

"I think what you’ve found out is that you do and when you increase again you’ll be back to where you were. "

I/we sure as hell hope so. What’s so daunting is that I am now experiencing symptoms that I never had before.

"I do experience the most dreadful cognitive problems with my MAV. It’s far and away my worst symptom. My brain slows to a hideous degree and renders me befuddled.(A neurologist once told me migraine slows the brain and the exactly what it feels like.) "

Hannah, you don’t know what a relief it is to hear from someone else that migraine can take this form. Many thanks for taking the time, whether or not you prove to be right in your guess about my situation. I’ll keep folks posted, of course.

— End quote

Hi David,

When I first got ill with this ALL I wanted to know was whether other people experienced cognitive issues with their condition. Mine were so severe it was terrifying. I remember telling a doctor early on in the illness that I was ‘confused.’ He actually laughed in my face as medically confusion refers to dementia. The fact that I knew who I was, the date etc…meant he thought I was exagerating. I was then told by the neuro otology department (when i finally got to see someone who knew what the hell was going on) that many of their patients experience brain fog. I subsequently met people on line with the same issue, and then much later in the illness I saw one of the top neurologists in the country, who was the most erudite I’ve ever heard anyone be about this condition and it was him who explained about migraine slowing the brain.

You mentioned new symptoms and this happens to me too with a relapse. My condition tends to operate on a relapse/remission basis. The relapse is usually set off by a trigger (flying/lack of sleep/drug reduction etc etc) and can be very severe and last for weeks. It’s happened to me enough times that I now know what’s going on and that I will generally get back to where I was before. I have been in a relapse now for a number of weeks brought on by flying to Thailand combined with a period of punishing and exhausting work and work related stress that led to some depression. Every time I have a relapse having been well, I always panic (although much less so now I have been through it before) and always think oh no, I am never getting back to where I was. I also experience new symptoms most times this happens, the condition comes back but often with additional new features - migraine likes to change things up. I forgot to mention that when this happens I often increase my drug slightly as sometimes the level of the drug I was on before isn’t enough to combat the upsurge of symptoms. A thought and obviously one you would need to discuss with your dr but maybe you should increase one of your drugs.

You mentioned depression - Scott, I believe, posted an interesting article about he link between depression and migraine, it is believed migraine is more prevalent in those who get depressed or vica versa (difficult to know which comes first, the chicken or the egg. I have also at times experienced the exhaustion you describe. That said, exhaustion is, I believe, a feature post seizure, so who knows?

Obviously I can’t know exactly what will happen with anyone else, but probably the reason I sound confident re the drug reduction and your getting back to health is because I have been through this so many times. That said, I am in a relapse now, and although slowly getting better with an increase in drugs, it’s impossible for me to ever be so confident about myself and clearly I still think I may never be back where I was. It’s the nature of living with something unpredictable with no solid answers that you always feel insecure and uncertain.

Wishing you well,

H

Thanks David,
The reason I asked was, I have always described my attacks as similar to a simple partial seizure.
My daughter has video taped the event for me. :oops:
I had a 24 hour take home EEG monitor (I looked like predator) it was negative, for epilepsy.

The Neurologist said if I had another attack, I should come back in and have another one.
As the tests are often not sensitive enough to pick up simple partial seizures and that you may need more than one EEG.

I spoke to a girl from the Epilepsy forum, that kept having absent seizures, and they didn’t pick it up on the normal EEG.
So they opened her brain and set the probes/sensors inside her brain (yuck) and they finally picked up on the seizure.
pretty drastic measure, but after years of fading out she was happy to go this route.

My symptoms are very similar to yours by the sound of it.
I also have flinching shoulders arms and leg OFTEN during my migraines.
Neuro said, this can happen with migraines as well.
Then I go into a Trans like state and my head falls the right, like the neck muscles are not working well.
I am fully aware that it is happening, but have no control over my muscles ( I cant move or talk) if I try to talk , I slur rubbish out of my mouth one syllable words and it’s very difficult ( almost impossible ) to speak

I am often left with a pain in my shoulders after woods.
Numbness, head nodding ECT:

My father (sperm donor who I never grew up with) has Epilepsy and migraine.
He also permanently rocks (vertigo)

So yeh, I can really acknowledge what you are going through.
I’ve also learnt that if people with simple partial seizures/absent seizures use the wrong type of anticonvulsant for their condition; it can make the seizure more frequent.
I’m not sure this is true as my source could be full of cacka
There is also a condition called migral epilepsy.
It’s migraine triggering an epileptic seizure or the other way around.
You might want to look it up.

I asked my neuro about it all, and he said these symptoms “are” possible with migraine.

Any way,
Hope this helps and all the best with it.
Cheers
Jen

Yow, Jen. . . sounds like you have damned miserable experiences with this stuff.

The girl who risked intrusive probes: did this result in not only definitive diagnosis but also a more useful treatment?

I decided in the early 1990s, when (absence) symptoms (with twitching, yes) first appeared, that I would not pursue professional gigs as a teacher or somatotherapist, because of the responsibility involved. Definitive diagnosis would not have affected this (unhappy) decision, unless it made such positions of trust more suitable for me to undertake.

Until I cut out alcohol, caffeine (and theobromine) upon receiving the meniere’s diagnosis, nothing interfered with the absences. That was the charm.

And then I finally went free of the last carbamazepine a few weeks ago, and kablooie. I’ve been back on it for about a week now, and my memory and mentation are starting to feel closer to normal. I’m still damned lucky that my sweetie is helping me, evenings, in handling an obligation I asked my publisher for.

That migral version sounds like an embarrassment of riches.

— Begin quote from “Hannah”

You mentioned new symptoms and this happens to me too with a relapse. My condition tends to operate on a relapse/remission basis. The relapse is usually set off by a trigger (flying/lack of sleep/drug reduction etc etc) and can be very severe and last for weeks. It’s happened to me enough times that I now know what’s going on and that I will generally get back to where I was before.
Wishing you well,

H

— End quote

Hannah, you are great at finding reassuring experiences to share, all without sounding airy-fairy. The fact that your symptoms change on relapses is particularly interesting, and the recognition that you get through it, very hopeful. A shame you’re suffering from one of the wallops at the moment. What brought you to travel?

Let me ask you (and whoever else shares the experiences) this: Assuming that what I’ve been hit with recently is basically migraine relapse, is there any reason not to pursue vigorous exercise? I ask this because on the one hand the fatigue and excess sleep feel like having very little energy to spare, and on the other hand, for a couple of months until this relapse, I was swimming laps most days, and benefiting greatly in fitness, energy and of course mood.

I dont know David ,
I never went back to the forum to find out.

jen

Hi David,

After months and months working on a very stressful job, I simply couldn’t stand the restrictions imposed upon myself re flying. I took a holiday in Thaiand that involved a long haul flight. On the way I was ok when I got off the plane, on the way back I suffered much more (and am still suffering the fall out although getting better.) I flew about two months ago now so it’s frustrating. I think half the problem wad the jet lag which is hard enough for someone without this condition but a serious hurdle for me.

Re exercise - there are no straight answers on that one. Recently two board members significantly improved their symptoms by slowly building up to a rigorous daily exercise routine. For other people exercise makes them worse. I think it’s a try it and see thing. Certain stuff I’ve read has mentioned exercise as one of the ways of keeping migraine at bay - my guess is tone down the intensity while you are very symptomatic and see how you go - you will find your level and what you can do without making yourself worse.

H