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AKmom

Senior member
Joined
Jun 2, 2010
Messages
608
Reason
DX UMND/PLS
Diagnosis
11/2009
Country
US
State
Alaska
City
Wasilla
What is with all this yawning? Has anyone on baclofen noticed that when its getting about time to take a dose...you start to yawn and yawn and yawn? I have been doing this when I feel the spaticity increasing a couple hours before dosage time. Seems I yawn but the yawn is usually cut short do to spasms in the jaw and under the tongue. They are not satisfying yawns at all. I am not tired any more than usual. Just they start and happen every few minutes apart and increase in number to every few seconds apart till about 20 or 30 minutes after taking the baclofen...then they disappear.

Is this part of a side effect of taking baclofen or is it a progression of the desease?:?:
 
I think it is more the disease. My PALS does both, baclofen and yawning. Never attributed it to the baclofen.
 
Don't know about the baclofen as my PALS isn't on it but she yawns incessantly just the same. It starts right from the time she wakes up and continues throughout the day. When we brought it up with her doctor, he didnt have anything to say about it. Since she never yawned like that beforehand, I decided it must be a feature of the disease.
 
Yawning is a pseudobulbar reflex, which makes excessive and unstoppable yawning very common on the PLS mailing list. Excessive yawning is basically a hyper reflex sign in one of the big nerve tracks into your jaw/face area.
 
Today is a tight day for me. Even with my baclofen I am having problems with spaticity and muscle cramps today. My tongue feels like it wants to pull back down my throat and my throat feels like there is a walnut stuck half way down. At times I have the urge to stick my tongue out as far as I can get it just to stretch things the opposite way. It helps to do so and relieves the pulling sensation for a few seconds or so but is weird just the same. I certainly wont do it if someone is in the room with me. I am not sure why these symptoms are progressing so quickly. I have only had the neck and mouth symptoms (bulbar) for a couple of months. My doc is concern as he feels totally out of his league on what to do for me. I told him I think we are doing everything that can be done. He still wants me to get into Mayo Clinic and is really pushing for it...but I am not holding my breath. I don't understand why its so difficult to get there.

I have come to a point where I do not complain to the people around me about my ails because it upsets them. I am just trying to figure it all out alone since no one really wants to hear it...or maybe its just that it scares them so much that they cannot tollerate the thought of it. This site has been a wonderful place for me to visit as I know you all understand where I am at and its nothing new to you. Thus here is where my support system is...besides my faith that God is not finished with me yet here on earth.

I have started having problems with sounding nasally at times along with the horseness that happens when I am tired. I have read recently somewhere that this is a progression also. It seems I am progressing faster lately even though I have been on the baclofen.
 
hi joyce,hep i get the yawning thing more so when the bulbar symptoms are troubling me more.........it is like beky said but also a part of the emotional liability.
i also get real nasaly,my gp noticed this when i first got ill and i think ordered blood tests for my thyroid gland (the one in the neck/chest area)
ofton sound like i have a cold.

in the begining my progression was a lot lot faster,after some years of talking to other pls'ers this is ofton the case.
maybe it is faster or as it is all new it appears to be fast.
but i do know with many it does eventually settle down to a slower pace,after 10yrs on baclofen i feel the longer your on it the greater the benefit.
i do get my sudden severe spurts of decline............a few years ago it was bulbar that eventually settled down then arms and shoulders contractions more past 12mths or so my hands are the biggest problem...........its not all the body all the time,just as well .

i hope a remmision period is coming your way real soon.
take care.
caroline
 
Thanks Caroline. I look back at all the many symtoms I have had and the ones that I think were the PLS stayed pretty constant now for 20 or so years. But its only been the past two years that I have been progressing at a faster rate of decline. Such as my toes curling and deforming from the muscles in my feet being in constant spasms (although the baclofen has fixed some of that...they are not curled as often although the deformation is still there). And I have to be careful as my falling has seem to gotten worse. But the progression to the bulbar has been the knewest thing..just a few months. And it started with the progression of spasming/cramping and weakness going up from my legs to my spine, shoulders, neck/throat, arms and hands. All in a matter of a few months.
This is what concerns me the most as well as my doc. I am assuming here (I am sure I might of read something somewhere for this assumption), but the incidence of ALS is higher for a person who is PLS? Yet I am thinking in my mind that it cannot possibly be ALS because I have suffered with this far too long.

Another sleepless night tonight. Here it is 4am and I have yet to go to sleep. This is my second night this week that this has happened. I guess its making me think crazy thoughts.
 
hi joyce,i am so used to all the pls stuff and pain that i subconciously play it down...........if that makes any sense.
to have sudden bad days,weeks or months can happen,i do get them.
i said i did not get too much hip pain once...........boy was i dillusional,past few days walking,getting up and down has been real bad with constant hip pain.

after 5yrs it is very unlikely to progress towards als,i dont want to frighten you but there are odd cases 10+yrs but very very very rare.

i get the foot spasms and toe curling on a night in bed (occasionally during the day).............my feet are always frozen ,i was thinking of trying some bed socks to see if it helps.

are you on sleep meds?............can't sleep without them plus my nightly baclofen dose.
hope you have slept better.
 
What is with all this yawning? Has anyone on baclofen noticed that when its getting about time to take a dose...you start to yawn and yawn and yawn? I have been doing this when I feel the spaticity increasing a couple hours before dosage time. Seems I yawn but the yawn is usually cut short do to spasms in the jaw and under the tongue. They are not satisfying yawns at all. I am not tired any more than usual. Just they start and happen every few minutes apart and increase in number to every few seconds apart till about 20 or 30 minutes after taking the baclofen...then they disappear.

Is this part of a side effect of taking baclofen or is it a progression of the desease?:?:
my husband just started the yawning recently. he has not been diagnosed, but neuro says he is probably in the early stages. he has had the leg cramps for at least two years or more, and recently he thought he had a sinus problem, but i am wondering. it only lasted about three days. he had a sore throat and was very hoarse. i read on here something about bulbar onset, or something. i'm so confused and worried. i really don't know what to expect at this point. if he does have ALS, it will be very helpful to have people to talk to who know what is going on. thanks
 
I am like you Carolyn. I down play alot of my symtoms too. Only because if I mention them I usually get a bunch of tests done with no conclusion to whats going on...just a big bill at the end. So I have to be careful of any new symtoms because I could be having a serious problem if its something else. Like lately (the past few months) I have been having an occasional stabbing pain about where my liver is located. Its like an icepick being jabbed into me and goes all the way through to the back. Usually only lasts a few seconds to a couple minutes then goes away and comes back. There has been a constant heaviness on that side too...as well as an achy pain that is pretty much constant. I let it go because I have severe adhesions and in the past the docs have found nothing more than those as being the cause for alot of my pain. But this sharp pain is rather new.

So I finally mentioned it to the doc about a month ago. He did a physical exam and then told me to wait and see. Which is what we always seem to do. Well it didn't change but has not gotten much worse and pretty much has been more frequently stabbing then before. So I ended up having an ultra sound which showed fatty liver disease (not new) and a mass of what they think is scar tissue covering the veiw of my pancreas...which they could not see. So I am back to where I started from except my bank account is $1200 dollars lighter. Meanwhile I have unexplained weight gain even though I am barely eating 1 meal and 1 snack a day. And even those are small healthy and nutritious meals low in calories. I should be loosing weight! The doc said he thinks its from the baclofen because my weight has been consistant for years until just the past few months I have been on baclofen.

I am no longer on any sleep aids. I took ambien for over 5 years and it had stopped working for me about the first of this year. So I stopped it. I tried a couple other things with no better results. So I figured if I am getting the same amount of sleep on them as I am off them...then I should just not waste the money. So now I do get some better sleep since starting the baclofen...I dont wake up in so much spastic cramps. But on some nights like last night...I just don't sleep. No matter what I try to relax I just cannot shut down the brain. And then if I do dose off, I end up waking with a shooting pain somewhere or a clonic jerk or a spastic body spasm that effects the whole body. Then trying to fall back to sleep becomes difficult again.

Nights like those I will take a narcotic pain med to help with the neuropothy or take a zanaflex to help with painful cramps that baclofen is not covering. Luckly these nights are only 1 time a week or less. But this week I happen to have 2 of them like that. Today I fell asleep after church, out on my deck in the sun (no I didn't get a sunburn...I have a very olive complexion) and took a nice nap for about an hour. That felt great!

Maxxp... welcome to the group! I am sure you will find the support you are looking for here. These people are very knowlegable and friendly to boot!
 
Hi All
I am having the same things going on as you. My toes curl terribly and I also yawn a lot usually more in the morning and after a hard day at work. I spasm in the legs all night long so I toss and turn all night. Lately the spasms I get are happening in my trunk area (similar to throwing up but more like wretching) This is screwing up my back because the trunk spasms make my back curl backwards and the pain is horrible. With the cooler weather I walk like a stick man and my back curls there too. My problems are mostly left sided leg and arm are weak and the slightest bump sends them into hyper mode. My speech problems are getting worse and the hardest to deal with. I'm nasal and horse and if I'm tired or stressed the words barely come out (like when you're trying to talk and cry at the same time) I thought that I yawned so much because I have sleep apnea but now I understand I'm probably having jaw spasms. I also occasionaly have sneezing spells where I bite my tongue with every sneeze.

I have been working full time but I don't know how much longer I can last. Yesterday I waited too long to go to the bathroom and peed my pants. Today I got up to switch seats and lost my balance fell and hit my head on a cabinet in full view of a waiting room and my employees at the desk.

I'm really messed up in the head because I'm trying to pretend nothings wrong but I know something's wrong. My symptoms started in 2005 and started getting worse last year and pretty quickly this year. I'm just hopeful I stay useful a little longer.
 
smblaha welcome to the group. Yes it sounds like your progressing in pls. Are you on any medications for the spasms? Hang in there and make adjustments as necessary. A company cannot fire you unless you are not doing your job. If you can do your job with modifications then they should know what the modifications are to accomidate you.
 
I have been yawning all the time and I feel tired most of the time. it makes it hard to force myself to get work around the house done, but i have to do some chores daily.
 
welcome maxxp and smblaha to the forum.

smblaha,your progression sounds very typical and much like mine.
i too get the sneezing fits as well,10-15 times in a row sometimes lol.
 
thank you for welcoming me. my husband has not been diagnosed, but he has all the symptoms, including leg cramps (two/three years, muscle twitching in both legs, he had a episode of hoarseness, which he said was a sinus infection, three times in the last week, he complained of hurting or weirdness in his jaw, he yawns a lot, and just today he says he feels sick to his stomach and has a weird feeling with his stomach. he has had one nerve study done, and the neuro told him that when they did that test they were looking for symptoms of ALS, no one had told him that before. he is supposed to go back for a second test to see if the symptoms are progressing, and he is putting it off, so i will have to call and make the appt. we don't discuss (it) very much yet, but i need to discuss having our wills done, because i don't how quick this disease can progress, or when he might not be able to write or talk to me. i have no family here to help me and i'm really scared. anyway, thanks for listening and comments would be appreciated.
 
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