Is it common/normal to shake/get tremors/some sort of shaking movement more often during a cluster? I'll try to explain...since my husband had the first cluster attack in February (and the cycle still hasn't ended), he will shake in his sleep. It started out as just kind of twitching the arm and leg on the same side as the attacks come, but soon it was definitely more violent than twitching. I don't really know how to describe it but it's a shaking of that arm and/or leg, plus a twitching of that arm/hand most of the time. It will happen sometimes when he's awake, usually before or after an attack, but ALL night usually...it will sometimes stop once he starts snoring.

There was also one night where I woke up because his head was shaking - his eyes were closed and going back and forth, so during REM I guess, but his head was shaking back and forth, not like a head shakes when someone shakes their head no but more rapid and violent than that. It continued for another few minutes while I was awake, and I'm not sure how long before that it started and how much longer it lasted.

I asked the doctor about shaking a few weeks ago and he didn't seem to think it was anything out of the ordinary but honestly it does not seem normal to me and makes me worry that something else is also wrong.

Does anyone experience anything similar? For a while we thought this was just because of the Topamax, but he stopped Topamax a few weeks ago.

Hmmm...the only time I experienced severe tremors because of a CH was toward the end of 3 hour KIP9-10. I was just exhausted and the pain was overwhelming. Not something I would have slept through, though. I would recommend you take a video of what you are seeing and show that to your doctor. That way there's a bit more to go on than just your description. Good luck with this. No one wants to deal with more medical issues while taming the beast. Blessings. lance

Hi Krys,

I also have a sort of twitching as I fall asleep  and sometimes it happens when I am just very relaxed.  It can involved my whole body or sometimes just a limb.  Mine doesn't sound as severe as what you describe.   

During a a hit, particularly bad ones, I will tremble or shiver but I attribute that to my body temp.   Forgive me if you have addressed this but, has your hubby had an MRI or an EEG to rule out seizures? 

Jeannie

Edited for punctuation and spelling

lance - thanks. i really should video things instead of having them just rely on my description because i never really know how to describe it accurately (and/or they look at me like i am crazy).

jeannie - he had a mri, yes. he has not had an eeg.  part of the problem is that he (my husband) denies that they could be seizures because he says there's nothing pre-ictal or post-ictal etc etc. but i just do not think it is normal. i mean the first two times he got the high kip 10 attacks, he was on the ground unconscious and shaking/trembling (which is why 911 was called both times and he was taken to the ER). but he says it was just hyperventilation. he was on topamax for several weeks...the shaking stuff had started before that, pretty much right after the cluster attacks started..and the topamax made him more jittery but didn't stop/relieve any of the shaking/twitching/tremors/whatever they are. (the topamax just caused other problems but, if they are some kind of seizure, did not help them.)

i'm just worried there could be something else going on on top of (or underneath) the cluster attacks and constant headache :\ problem is when my husband is saying no no it's not seizures and insisting that they're not seizures..the doctors are tending to listen to him more than me.

I get tremors on the CH side fairly frequently, usually a bit before a hit, and sometimes for a period of time after.  It looks somewhat like Parkinson's, but I have no other Parkinson's symptoms.  That is something I am aware of because my mother has it.  Have that checked ASAP to confirm one way or the other. 

Jerry