Okay...so am wondering whether anybody else gets problems supporting their head. I was considering getting neck brace recently as car travel seems particularly bad - whenever the car passes over a bump or pot hole my head drops, speech and vision goes - does anyone else get this? I tried to have a brace fitted but fainted just lifting my head to get it put on, so seems it might not be such a good idea! I seem to have an incredibly sensitive neck! The other weird thing is, when I look over my left shoulder it really badly exacerbates my symptoms, and within about 10 seconds I pass out. Does anyone else have this problem? I've had a thorough cardiovascular work up and we're pretty sure there's no blockage there, unless there's some kind of swelling that could cause a slight compression in that area....would be interested to hear your thoughts/experience.

wild_cat

You need to see someone about that. It sounds like you may be having trouble with your vertebral arteries. Do a search on "beauty parlor stroke syndrome" and see if anything fits. Definitely what you are experiencing is not MG all by itself.

That sounds really complex...
Mine is something like this: head too heavy to hold up for entire length of examination at opticians especially keeping the same position using the same muscles - it was torture! Also impossible to go on a bike ride for many years - would start out OK but within a few minutes the cycling position proved an impossible challenge for rapidly fatiguing neck muscles...

A

My mom and her sister both had neck issues. Mom saw a neuro and he told her she was just de-conditioned, about a year later she was DX'ed with MG. At least he didn't refer her to a shrink. You gotta love these neuro's.
Mike

A weak neck (head falls forward when car hits a bump) is a typical symptom of MG. Passing out when you move your neck is not!

Abby

I think you may have carotid sinus syncope.

http://www.diversalertnetwork.org/me...Sinus_Syncopes

Carotid sinus syncope is a related phenomenon: this mechanism also works through cranial nerves (the glossopharyngeal and vagus nerves). Within the carotid arteries (large arteries in the neck) chemical and pressure receptors provide feedback on blood flow and blood pressure. When appropriate, the feedback results in a decrease in the heart rate and blood pressure. Some people have exquisitely sensitive carotid sinuses and may faint when pressure is applied directly to that area of the neck. ..............................For the rare person who faints with slight pressure to the carotid arteries, various terms are used to describe the phenomenon (e.g., hairbrush syncope, shaving syncope). These individuals may faint when simply turning their head to the side or wearing a tight collar.

Thanks so much for sharing your experiences. It's interesting to know the car bump/weak neck syndrome can be attributed to MG. I have had a cerebral angiogram to check tghe verterbral/basilar arteries and it came back clear, so we're pretty sure that's fine. I suspect, as Jana suggests, the fainting and worsening of symptoms may also be linked to the carotid sinus (is this the same as baroreceptor regulation?). Certainly when I press on the front of my neck the same thing happens. I believe I have some element of postural hypotension and this may be part of it -- does anyone else have POTS or related issues? Typically I can't sit without my feet raised, otherwise I do a classic Mr Bean style -- head slumps forward, body follows, no grip on the rest of the limbs! I can't stand or walk for very long either. Not sure whether its POTS particularly or just PH but certianly for me only part of the picture!

Hi wild_cat

I am new to this group. But have had MG for many years.

My experience with neck weakness/pain has fluctuated over the years.

A few years ago - I tried wearing a neck collar - both a soft one and a hard one for support (and resulting neck pain).

I had problems using both of them. Range of motion was greatly affected and muscle weakness in my neck and shoulders was exacerbated.

But, I still almost always (90% of time) need to have my neck supported. (Sit in chairs with neck support, use neck rests in cars, etc.)

Sometimes my vision changes based on my head position (double vision),

But never have had the feelings/symptoms you describe (fainting, etc). I am not a neuro - but these do not sound like MG symptoms - that I have had or read about. But they do sound serious.

Keep searching for an answer. What kind of doctor(s) have you consulted about these symptoms?

Hi, SoftTalker, and welcome. What do you mean by a chair with neck support? I have a heavily upholstered desk chair, and I slump back and rest the base of my skull on the top of the back of it. This works really well for me at home, but if I had a job I would need some more standard support.

Abby

When I am weak, like now, My neck joints snap crackle and pop. I notice this first before the weakness becomes apparent to me. It sounds like popcorn popping when I move my neck. I need something when I drive. I use a travel pillow for support.