My apologies in advance. It IS a long post. But it IS something that I have been struggling with for a long time and so far this is one of the scariest and most frustrating things of CH I have had to deal with so far (aside from the pain).

I can only hope some of you will take the time to read through this. You cannot imagine my gratitude!

Ok, I have been struggling with something weird every time a cycle starts and I up the topamax dose. It lasts for a couple of weeks, even lasts until way after the cycle but gets less worse. I can't figure out where it comes from but it has a big impact on how I can function as a being and it freaks out my wife.
On good days, ALL my energy goes into focussing my efforts to not let it show too much (like to my collegues etc...)

I'm wondering (and I truly hope I'm not alone... though at the same time I realize it's selfish) if there are others out there who are experiencing the same thing. And if so, what can you tell me about it? Any ideas as to where this is coming from? Is it the clusterheadache that causes this in the first place? Or is this a so called lingering shadow? Or is this yet another topamax side effect? If so, I will not waste another week before making an appointment with my neurologist...

So here's it...
when a cycle kicks in, whether I've been taking topamax or not... after attack 2 or 3... I get a weird feeling in my head. I figure it's from the pain. You know, that lingering feeling, some kind of reminder I've just been visited by the beast, been stabbed by 300 toothpicks for 1h, it tingles...

The feeling starts at both temples, goes backwards and is concentrated at the back of my head. It is a tingling feeling.
Sometimes it makes me feel very light headed. On bad moments, I can't even walk straight. This is especially the case during a CH cycle. I have trouble talking decently. My words come out backwards sometimes. Sharp sounds echo through my head. The world around me seems like it is passing by way faster than I can absorb. My left eye is red a lot at the peak of this.
Next, another feeling is situated around my eyes. I feel it in my eyelids... maybe the eyesockets even...
I can best compare it to waking up in the middle of the night at 4AM in the deepest of your sleep. My eyes are ok, but the area around my eyes feel very weird. Almost exactly like when I wake up in the middle of my sleep.
along with that tingling feeling in my head, it's keeping me down from doing anything at all.

The cycle nears it's end, what a relief. I have upped the topamax dose to what I believe it should be (or in accordance with my neurologist). The most annoying now is that buzzing feeling in my head. I can't concentrate. My left eye feels dry but is not red anymore. The world is still passing by way too fast for me. I feel numb. Maybe that's the right word. Does my head feel numb after all that pain? I still pronounce words backward sometimes... very weird and kinda freaky. I seem off world sometimes, why won't my head start feeling alright.
That feeling in my eye sockets is still there, not always but comes and goes in surges. Not good... It's wearing me down.

The worst thing is that because of this feeling in my head and eyesockets and my inability to function properly, I have to stay home from work. I just can't concentrate anyway. About a week after the cycle, things start to get a bit better.
I go back to work but I'm only at 60%. Things still go way too fast for me. That tingling feeling just won't go away. It's there the entire time. It's there especially at the back of the head. My collegues describe this as me being high or something. Like I've been taking way too many paracetamol's with codeine... I try to concentrate but at the end of the day I'm beat and just want to sleep. It is especially then that this feeling in my eyesockets gains the upperhand again.

Now I wonder... did all this start by the CH? Or is this maybe yet another side effect of topamax.
Now it's been 2 full weeks after the cycle. Still same dose of topamax but a lot clearer in the head. At least I can function well during the day but the buzzy feeling is still there and I still need regular breaks.
In the evenings I'm still beat though and sometimes I just talk weirdly anyways. IF I fall asleep at home on the coach, THAT's not a good thing, because when I wake up again to go to bed I don't have ANY coordination at all. My wife practically has to carry me to bed.

What I HAVE NOTICED is that when I stop taking topamax in the middle of a remise, things get awfully better. But maybe that's a coincidence because at that point it's also been like two or three months since the last CH attack.

I've mildly discussed this with my neurologist a long time ago. He doesn't believe topamax can cause any of this. I didn't go into detail because I felt like an idiot back then...

Another thing I almost forgot to mention...
My memory is like non-existent during a ch cycle. And during the period that I have this tingling/buzzing feeling, my memory is a mess as well. Maybe because I have such difficulties concentrating... I don't know.
But it's frustrating for my wife. I have to concentrate so hard at work that, when I get home, I often feel I've got nothing left... and I just forget to put in that effort at home as well

I have read that CH patients are much more affected by fluctuations in the seratonin levels.. Could this have anything to do with this?

I have noticed that when my wife scratches my neck or back and I get a goosebumpy feeling because it 'feels good', that buzzy feeling in my head changes.
Also, during a CH attack, we have an understanding that if it gets bad, my wife tries to scratch my neck and/or back area because we noticed that this generaly generates a nice buzzy feeling in my head that enables me to focus on a nice feeling aside from the pain. It helps me relax and helps me get through the attack. This buzzy feeling is almost the same as the one that's contantly lingering now but... I don't know... it is so hard to explain. This one seems more like some part of the arm you cut off from blood for a while and then all of a sudden it gets more blood...

*sigh*
If anyone has had the courage to read through all of this.
Please, anyone... aside from the pain this is what brings me down on my knees most...

Being in pain is one thing, having the unknown happen to you is another thing, but seeing how the people around you, most specialy the ones you love are affected by it... I want to fight this thing! 

RuVa

Although Topamax has helped greatly for a decided few folks, it has earned the nick name Dopymax for a very good reason.

I can't say yes or no to the lingering head buzzing being due to the tomamax, but I can without a doubt say that topamax also made me dumb as a brick and unable to concentrate.  Helped subdue the CH attacks but quality of life between hits was suffering severely.  I was all but useless at work, and lack of short term memory made it difficult to do my job effectively.  I was nearly fired over it.

Only YOU can choose what quality you will gain or lose by stopping it, and always talk to your doctor about the safest route to stop any medication.

I read your post very, very carefully. Some of it I can relate to; some of it I cannot. Frankly, some of of your post just doesn't make sense. My apologies if I am just not getting it.

I am one of those for which Topamax works very effectively with almost no side effects. After three weeks of ramp up, my headaches are effectively suppressed with no requirement for O2. Yeah, I can feel them lurking down there, but they do not break through.

I lost 9 pounds while waiting for the Topamax to kick in and suffered a lot of 8s and 9s at 90 minute intervals before I got the oxygen.

When I take my three 25 mg pills twice per day, I am a bit spacey for about 90 to 120 minutes. After that, I am OK and can function normally. I don't think this will help with your problem, but I offer it for what it's worth.