Help! need some answers ...head nodding

Hi All,
I’m sure I’ve asked this question before and didn’t get many responses.
Maybe because you don’t have this problem.
Not all my MAV/migraines are the same; they vary.

Sometimes maybe 5 times a week I have an interesting attack.
I become extremely sleepy feeling my head starting to nod! I can’t hold my head upright or my eyes open.
I am so weak that I can’t stand up, can’t respond (speak) but I am completely conscious. I can hear everything! That’s going on around me, but can’t respond.

My Question is:

Do any of you have vigorous head nodding during a migraine?
And /or attacks such as these? Is there anything that I’ve said that makes any sense to anyone?

Thanks so much guys.
Jen
xx

Jen, I have never heard of this or experienced it in regards to MAV.

Sounds scary.

Hi Jen
This sounds more like a seizure experience during a migraine. I’ve had head nodding (not continuous or severe) but just sort of nodded myself off to sleep when I could settle down somewhere. Though it might be a bit scary, the experience may be more common than we think. Best to be relayed to your doctor ASAP. Does this happen often?? Definitely sounds like part of the neurological overactivation spectrum, and I’ve seen the inability to speak (aphasia??) listed in the symptoms lists in migraine books.
Can you or have you taken a rescue drug during these experiences??? Ok, enough questions for you there.
Gail

Jenny my mum had similar experiences with her migraine (she had dreadful hemiplegic migraines) - not sure about the sleepy bit or head nodding but she would get very week and totally out of it, slurred to no speech and then it would progress to full on paralysis down one side of her body. Then after 20/30 minutes she would be wrapped around the loo for at least 30-60 mins of constant vomiting

gotta tell you this was NOT fun to experience as a kid

Hey Gail,
Yeh… it’s pretty frequent and aura can come before it, I don’t always notice my aura anymore as I ignore it if possible. :shock:

I tried to convey my other symptoms to my neurologist, but I think the little pictures I drew of my aura were more interesting to him, than what I was actually saying!
He just looked at me with a SCRUNCHED up face.

Gab, at first it was scary, and after these episodes stopped, I felt so over emotional, I would cry out loud, embarrassing in company, so I just stopped going anywhere.
I suppose, some friend’s have said they thought I was drunk, when I WASNT!!

Thanks so much for your answers guy’s,
as I’m trying to identify what these events are, and if they are at all Mav related.
So frustrating!
Marci recommended a sleep study, I’m gonna have one, as this is driving me crazy.
I’ve made some really good progress with my Mav symptoms and now think I need to address this unusual symptom.

Gail Dizzy, thankyou! intersting.

Jen
xxx

oops sorry, no rescew meds as of yet, do you mean tryptans?
My neuro said tryptans are deadly for my condition.

But in the past I use to take nuerofen, or pain meds.
neurofen ofter aborts my migraine if caught early enough.
3 times a day for a VERY specail event (wedding) or a night out which isnt often.

I’ve been trying to follow Dr silvers advice and have been free of abortives for a while now.
Hmmm?
PS it hasnt changed my migraines at all.

jen
xxx

Jen, is this the same as paralysed sleep? Where you go to sleep at night, body goes to sleep and mind stays awake, very frightening experience, I used to have that. Thats the only thing I can relate to not being able to speak although you are awake.

If you were going unconcious, I read years ago of people who had what was called Basilar Artery Migraine getting these attacks,
They used to say it was the basilar artery going into spasm, you would need to read up on this.

Christine

Hi Christine,
I know what your talking about, as I have that type of thing during sleep and while I’m waking up, since I was very young.
I thought every one had this.

But it’s not what’s happening, as I am awake during the day and can be sitting there talking, reading, and it just happens.
I’m awake I know whats happening around me, but my eyes keep closing and head keeps nodding, I feel like I’m dosing off into sleep and cant wake up.
it’s kinda out of the blue.

So this isnt a part of your mav either Christine ?
you dont have any head nodding or going out to it during a migraine ?

Thanks

jenxx

No Jen, dont think I do. Only other things that are similar are a sort of sinking into the bedclothes feeling when I am totally exhausted, cant really feel my arms etc. as I am so tired (no head nodding) and if I am upright, knelt etc. my head can sometimes be like its whooshing to one side on its own (sorry cant explain it any better than that, I sound as mad as a hatter) but its all neurological :?

Christine

I don’t know if this is related, but sometimes when my migraine activity is building, my head will feel real heavy. Maybe it’s a milder form of what you are experiencing. Just yesterday it was a bit disturbing and I kept rubbing the back of my neck because I felt like I was straining to keep my head up, and I was driving too so it felt even more noteworthy. My symptoms the last few days have been increasing as I’ve had an accumulation of exposure to triggers lately, mostly of the airborne kind, and have pushed my luck a bit with a few food things too, and while I am still functional and independent I am increasingly uncomfortable, and, my head will sometimes feel real heavy when my symptoms are ramping up. There have been a few times when it has been worse too, but I don’t think to the extent of yours.

Hi Christine,
I do know what you a talking about, I have many
perception problems during my migraine and while falling off to sleep and upon waking.
I have had sinking into the bed as well, often during this time I feel like I become “part of the bed” and can’t move!
I think it’s one of my symptoms of alice in wonderland syndrome, I’ve had it since childhoood. YUCK! it’s a migriane symptoms according to my neuro.

Hi Burd thanks for that,
sounds similar, my head drops to the right,always the right , and starts to nod uncontrolably.
during this time, I am in another world and not able to talk except to grunt.
my speach is slurred for a while after it finnishes.
It worries me as it can be inderpendant of my migriane aura visaul (somtimes) or maybe I’m not noticing the aura .
it buids slowly and I know when the feeling comes over me, to just sit down.

I have a feeling it could be happening due to my sleep problems , so I’m going to have a sleep test done.

thank’s guys

jen
xx

Jenny,
do you think it could have anything to do with the meds or hormones? I know some can cause tardive dyskinesia (sp?), but those are the antipsychotics…I don’t think that is it. So strange though…when do you see your doctor??
Kelley

I dont think so Kelley,
as this started way before I tried medication.
I really did think you all had this, but over the years of being on mvertigo no one has mentioned symptoms like this.
Maybe one girl named Heather had similar symptoms , she dissapeared from this site years ago.

jen