I was just wondering how those of you with problems holding your head up deal with it? I have bought 3 different neck braces and none of them really help, they are so uncomfortable. I get temporary relief with ice, I've even considered tying my head to a high back chair....(like maybe my car seat..lol)... or getting a wide board to go from my waist to my head and having someone strap me too it!

Well, neck weakness will definitely impact your quality of life, and not in a good way. I've wondered about neck braces, and have always felt that they would not be useful because the weakness is "all connected" and when you brace one body part another has to compensate. I'm glad to read my theory holds true, but sorry it does as well, because you are stuck with 3 braces and a weak neck.

I have had a fair share of neck weakness and that is still one of my weak areas, even after having largely remitted MG. Making sure the neck is supported by a high backed chair or seat (car) is very important. Planning activities that will require neck strength for your "stronger" periods of time. Lastly, and probably most important, is to consider a revision of your med regimen as it can improve with proper medication. Talk to your doctor. Neck weakness is nothing to ignore, as sometimes swallowing and breathing issues can be right behind it.

Sorry you are experiencing this.

Thanks, I just came out of a crisis, was released from the hospital Sunday. I saw a brace on e-bay designed for ALS patients, I'm going to try one more.... if it works I'll let you know. Sarah

I mostly just try to avoid looking downward for prolonged periods -as that seems to exacerbate it the most.. before IVIG, I Just had to rest my head on my hand a lot..

I have only had my neck drop once. But I sit in a high back chair that supports my neck comfortable so I do not have to hold it up myself for most of the day. I also have the neck rest at a comfortable position in the car and rest my head on it while I drive.

Have you tried one of those boppy neck pillow while leaning your head on a high back chair? I think they have some made of gel, you could put it in the frig and the cold could help the strength too, I think that would be more comfortable than a brace. Let us know what works.

kathie

Oh, yes, please do report on your experience with braces! I have thought about trying one, but like 4-eyes says, I was afraid it would just end up straining some other weak muscle.

I bought a zero-gravity recliner to bring to places like my son's Little League games. It's really heavy, unfortunately, but the tilt is perfect for resting my neck. I do a lot of work on the computer, and I have found a way to slump back so that the back of my head rests on the top of the back of the chair (and my feet are up on a stool). But when I'm having a weak spell, I find it really hard to sit for long in a straight chair.

Abby

Before my crisis I had it bad some mornings upon waking I couldn't even lift my head out of bed...enter mestinon syrup or pill and I could move. In the hospital when i had phemnonia and my lungs collapsed I was at the nurses mercy could not lift my head at all...some days now after my 10 plasmas I still feel neck weakness but it goes away. I try to fight it. Neck brace might be good idea though if its too bad..

Abby I will, it's funny how you find the right little nooks for your head. I just kick my carseat back sometimes and let my head rest until I feel like going again. Huntress I bet that was a very unpleasant experience.