Initial & long lasting symptoms, apart from H-ache

I wanted to try and focus on one symptom in particular that arrived with a bang, and has been a stumbling block for the medical professionals.

The main issue is I can't describe the symptom well enough for Doctor's to latch onto; and none have been able to help draw it out of me.

I can see their point, but it's extremely frustrating!

Here is the symptom (as best described by me):

I have had an associated feeling of chemical imbalance/reaction in my frontal lobe. It has morphed over the past 2.5 years, but it's always there. When it was extremely bad, it would cause me to not be able to fall asleep - it would come on like gangbusters; I'd have to fight thru it to finally fall asleep.

My only description is that it's like a chemical storm; sometimes when my eyes are closed I see light patterns. I can't explain it better than 'it feels like a electro/chemical reaction'.

The Dr's, of course, say that's a diagnosis, not a symptom. Do I feel dizzy? No. Do I feel any additional pain? No. Does it bring on anxiety? Yes; (at this point they usually say that it's the anxiety that is causing this sensation - bull feathers!). Does it tingle? No. Do you I fell light headed? No.

Further information; over-time, my system was recovering (apart from the headache), and this 'symptom' lessened in frequency and intensity.

When I started taking Topimax, it immediately resulted in a dramatic return of this symptom.

Also - If I have a few too many drinks, the next night this symptom is always worse.

Every professional has not been able to work with this information.

I feel it is key for the following two reasons (which to me are obvious).

1) after the rapid on-set (see my story in the intro section), my entire body was a mess; fatigued, muscle pain, weakness, sudden food intollerances, etc. etc. Overtime and working with different programs (diet, accupuncture, etc. etc.), my system has thankfully returned to almost normal. The only 2 persistant things have been my headache, and this mysterious symptoms.

2) if i do anything that i know worsens my headache (drink, fly, get a head cold etc.), this symptom also reacts in step.

Can anybody relate to this, and possibly provide me with a better way of describing this?

Thank you in advance.

I have not told any doctors about it at this point because it hasn't been happening very long and so far hasn't been bad enough to really disturb me. I just blamed the medication since it started when I raised the dose. I suspect it has something to do with brain chemistry, since yours seems related to Topamax (in the same general class as Gabapentin, I think), and alcohol. I have no idea how the head cold would be related to brain chemistry (though I am sure your body fighting off something does have an effect, but that is way to hard for me) or flying.

I have wondered if the sensation that I think of as the little electrical charges dancing/zapping around could really be something related to blood flow. I am not sure I would be able to feel actual electrical charges, since I certainly am not aware of most of the ones that go zapping around in my brain. I really don't know what it is. Until I read your post I thought it was a really good imagination. Now I am not so sure.

Post edited by: MaryR, at: 12/19/2007 02:38

I'm familiar with the blood rush feeling. What I'm describing feels like my frontal lobe is trying to jump out of my head, similar to anxiety, but not identical.

When it's bad, I have to open my eyes, get up, and start using my brain (grab a book, for example), and it settles down.

It's always when I'm trying to fall asleep.

One neurologist dismissed it by saying 'the majority of symptoms are more easily identifiable when you are falling asleep, as they are more pronounced while your body/mind are winding down'. I think, while that maybe true, it's not related to my issue.

I do sometimes have to open my eyes and look at something to try to get the lights to stop. The funny thing is that they do stop when I look at other things. It isn't like a migraine aura where I see everything at the same time, the lights will stop when I put in other visual stimulation. Very weird. It is almost like a hypnogogic (while falling asleep) hallucination except that my eyes have to be closed to do it. I don't know how close to sleep I actually am while I am doing this (probably pretty close since I can't remember how I make it stop). It might actually fall under hypnogogic hallucinations for all I know since it only happens when you are trying to fall asleep. (Those don't count towards a diagnosis of schizophrenia or anything by the way.) Having these headaches and being on all these medications that mess with brain chemistry or are sedating in and of themselves may tend to cause weird stuff like this. My sister with a sleep disorder now has hypnogogic hallucinations (real ones not just lights, she sees hers with her eyes open too) sometimes though she never did before. Her brain and body sometimes go to sleep at different speeds or wake up at different speeds so what should be a dream is something she actually sees/hears. That may be a very simplistic explanation of hypnogogic hallucinations but it works for me. I am not sure that what we are experiencing really qualifies, but that is the closest thing I can think of.