muscle cramping

[handinhand]

Those of you that started with Bulbar diagnosed, can you tell me if you have terrible muscle cramping under you chin, really awful when you yawn? Lately it has started down my neck and lasts for a while. It really hurts...Are you on any meds for this? :-(

 

[indigosd]

Web has experienced this on occasion and he says that it is REALLY frightening and painful. He is NOT on any medication for that as of now but I have definately read where most Bulbar PALS have this symptom and are on medication. I think that it is Baclofen?

 

[John1]

I take baclofen but it is not to reduce cramping, but rather, spasticity. Not the same thing. Some people with severe cramps here recommend quinine and magnesium I think. Perhaps they will chime in or try searching the forum for 'cramping'. I suffered severe leg cramps (Charley horses) for a couple of years, mostly at night in bed. They have reduced considerably in both frequency and intensity. Now I'm getting cramping in my hands as they weaken.

 

[rose]

I've had them, and they're the most painful of any cramp I've had. I think Thelma's dad was actually hospitalized for the pain because they did not know what was wrong.

Baclofen does not help me as much as tonic water, but keep in mind if you use the tonic water, it has to actually contain quinine, so the cheaper store brands won't work. Take heart in that for most people they don't keep constantly happening over long periods of time.

 

[handinhand]

Thanks for the information. Do you mix that tonic with something? It tastes awful? Thanks Rose.. I have heard people talking about the hands arms stomachm legs but not the neck and chin... It is very painful. Stretching my neck helps a little. They are just getting worse and worse. I'll go get the water... Lin

 

[sadiemae]

My husband gets them in his neck when he yawns, and someone suggested a neck brace to wear. He said those are only for when you go to court! I think we may try one though for when he is laying in bed watching TV, just to give support to the neck because maybe the muscles there are weakening and causing the pain.

 

[rose]

Linda,

You could ask for a scrip for either Plaquenil ( a quinine drug) or just plain quinine. I don't think they like to do the quinine prescriptions much anymore because of unwanted side effects. This is what I was told at the clinic, anyway. I don't know what the side effects are. I was on Plaquenil for about a year, back when I was being treated for this possibly being Sjogren's Syndrome, and it helped with the cramps tremendously.

As for how to make the tonic water more palatable (thankfully I actually like it!) a slice of lime or lemon perhaps? and/or a shot of vodka or gin.

 

[Al]

Strange, second time I've seen Sjogren's mentioned this week by a member. I've recently started getting throat cramps while yawning. They do hurt. So far I just grin and bear it. Or go back on the quinine.

AL.

 

[handinhand]

This was one of my first signs .. Every time I would yawn my under chin would tighten up so tight. It was like a big Charlie horse in my neck. That is what I told my Nero..... That has lessened up a little. Now I am having the same thing in my neck . It really hurts worse than any muscle cramps I have had to date. I will ask the Doc about the sjogren. I will get some more soda with quinine... and lemon...... Thanks , Linda

 

[piperl4]

Those of you that started with Bulbar diagnosed, can you tell me if you have terrible muscle cramping under you chin, really awful when you yawn? Lately it has started down my neck and lasts for a while. It really hurts...Are you on any meds for this? :-(

Yes I have had it very bad till I figured a simple trick. It always happen when I yan unconsionsiouly and then a knot forms and it tates 10 min to rub it out. Now I am carefull I feel my self starting to yawn and catch it half way and kind of hold it there then yawn slowly I have had no pain since doing that. If I could master the other muscle pain would be ok. I have had many operations to just plain cut the muscles to keep them from going into such hard spasms. seems to work being as I don't need them much anymore anyway. Hopkins is trying every trick in the book then some
Dave

 

[rose]

I've got them in the side of my throat again today. Woke me last night in fact.

 

[handinhand]

I have been having them in my neck.. not so much with yawning now,but if I do yawn it always happens... Today was a hard day. I just could not say some words at all. I have not felt myself. back of my neck hurts ..Lots going on in my poor head and neck I think..... Hope tomorrow is a better one.. L