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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
can baclofen that is by mouth, cause cognative problems? Has anyone encounter this?

I have been on it now since summer of last year...so coming up on a year. I have had some cognative problems that were related to a brain injury (specifially my math computation skills, and both long and short term memories effected, as well as the inability to multi task anymore). The long term memories came back and the math improved a little but not like it was. Then I had the stroke which effected my not only my whole body but cognatively it effected my speech. Like I use the wrong words for objects...like calling a spoon a fork. This has never resolved. I know in my mind what I want to say but it comes out something different. And its worse if I am in a hurry to say something or I am trying to do two things at once. Like cook and talk...I will say a word that is related to what I am doing to a conversation with someone I am talking to but it has nothing to do with the subject. The stroke was back in '03 I think.

So now I am having problems with faces and names. Even people I have known for a long time, I have to hunt through my brain because I come up empty on where I have seen them before and what their names are. This is something that I remember I had after the car accident but it got better and went away for the most part. Now it seems to be getting worse. Also I have been told that I am becoming more rude to people (totally not my intentions or personality) and that I say things that I do not remember saying.

Has anyone had personality changes since starting baclofen?:confused:
 
oh joyce,we are like two peas in a pod me and you:)

baclofen can indeed cause cognitive problems as do many other drugs.
i am sure baclofen was the reason for my earlier cognitive problems but i have cut down over the past few years yet my cognitive problems are increasing.
i have had all the symptoms you mention..........can not multi task,difficulty getting words out and i stutter.
its a catch 22 situation........could you manage on less baclofen to see if theres a difference?
maybe it is down to your old trauma and its just baclofen making it worse.

(((hugs))):)
 
You might be right Caroline. My use of baclofen is about 20mg to 40mg daily..but sometimes I have to take a 3rd one if I get overly spastic. I do take tizanidine every night with one of my baclofen doses as at night I seem to be worse and spasms keep me awake or wake me. So the tizanidine is only 4mg a night.

They did find changes in my brain mri. They could not find evidence of the old stroke in the basal ganglia and they told me that sometimes they disappear if they were not really big (which it wasn't). But they did find changes called "solitary punctate nonenhancing FLAIR/T2 hyperintense focus in left frontal subcortical white matter". This was not on any previous MRI's in past years. I am not sure if this would be the cause of cognitive problems and I am not thinking it is.
 
not sure about that joyce,i did look up what you wrote but it came up with many reasons which could cause those mri results.
you could send wright a pm,he is more qualified to answer such a complicated question.
 
I have the same problem, but it's connected to epilepsy and associated meds. I stopped taking baclofen back in November, thinking that it was attributing to terrible fatigue. My fatigue did not improve in fact it worsened.
Luckily my spasticity is only mild and coming off baclofen has not affected me.
I am really not sure how to deal with my sleepy eyes and fatigue. It's getting worse by the day and is now keeping me on the couch for way too much of each day!
 
aly,not sure about the sleepy eyes but i did get disabiling fatigue in the early years.
i never put it down to baclofen and personally other than making you a bit tired or sleepy i dont think it can cause such disabiling fatigue.
i had such fatigue before i started baclofen,the bedridden unable to move kind.
i was told such fatigue is called neurological fatigue caused by damage...............like in ms as you would know.
the best thing is to do nothing ,if your body wants rest then let it............pushing yourself causes more damage.

lay on that couch and dont do nothing till you feel stronger.
(((hugs)))
 
Aly, I do not feel a change with baclofen and fatigue anymore. I have the usual amount of fatigue that I had before baclofen. Although I must say there are times that I had gotten super sleepy during the day and layed down for a bit to take a nap. This happened a few days ago...I layed down and couldn't wake up! I mean I was telling myself to wake up and I knew my lil one was on the bed with me playing with her ipad while the tv was on. I would try to talk but it was like my words were barely coming out like a whisper and really in sloooooowwww motion. Then I tried to turn my head toward her but couldn't move! My arms wouldn't move! My fingers wouldn't move. Yet I felt so sleepy I would sleep a little more then wake up and be in the same state. I do not know how long this went on but a few hours because when I fully did wake, it was time for lil one to go to bed. So maybe it was about 4 hours!
 
Caroline, that is what I thought about the type of sleepiness that hits me every so often. It has been happening more lately but I just lay down and fall asleep for a couple hours. The event I discribed above has happened in the past too on occasion but not as long.
 
mine was not really just a sleepy fatigue,it was my body like totally lethargic.
i would wake up in the morning after 8hrs sleep and go downstairs only to collapse on the couch and would be there unable to even get up till late in the evening.
i could not even move to change position and could not eat or drink.............like paralysed.
this would go on for a week then i would be able to sit up and move a little,be like that for a week and feel like i am getting strength back.
then i would wake up one morning and not be able to move my legs,another week or so with this.
this is neurological fatigue when theres active damage being done which then results in neurological symptoms.
this happened about every six months for 3yrs in the begining.............which made them think ms but mri's were always clear.
i do get such fatigue in very hot weather still but other then that it cleared up.
 
It's really getting me down:(. According to literature and my Hubby MND should not cause ms type fatigue. Arghhhhhhhh I hate sleeping with a text book. It's crap. I have not changed my anti epileptic meds, had only a tiny seizure in last 6 months. He wants me to have tegretol levels done, but I havnt changed the dose, so I will not !

I was exhausted after 10 minutes up, I am back on the couch watching Jeremy Kyle! How's that for desperate?

Thanks you guys, just chatting helps.
 
aly, tegratol levels need to be checked regularly even if the dose hasn't changed. Your matabulism might have changed and the tegratol can build up in your liver or some such thing. I took tegratol during the period of time before we knew exactly why I was having seizures...and had to have bloodwork every 6 months after the first 6 months. Within the first 6 months they checked it at 3 months. They wanted to be sure my liver could handle it or something. I have never had liver problems...but apparently after the 3 month check my liver emzynes (or whatever they found out by bloodwork, it was so long ago and I am not sure of my memory anymore) were elevated but not by much. They lowered my dose some and I was fine at the 6 month mark.

The lethargic fatigue you mentioned Carolyn, sounds like what I go through daily. I have learned to push beyond that. Although there are times my body just wont go. I always wake up tired. But they found out long time ago during a sleep study..that my brain does not stay in 4th stage sleep. It might touch it but I pop fully awake after a couple seconds of it. Which is most likely when I get the 'paralizing' sleeps were I think I am awake and feel completely paralized. That didn't occur to me as the reason to that type of sleep till I just now mentioned it! They found that I go wake over 375 times a night. And I do not have narcolepsy. All this and they couldn't tell me why I wake up! Story of my life!
 
aly,you watch jeremy kyle:!::shock:................you get it there?
its not as bad as jerry springer but its the british version.

joyce,on reflection i do still get fatigue just not the kind i used to get.
sad to say but i have lived with my symptoms so long i dont notice they are there.........got used to them and just get on with things.

if i dont take my baclofen and my sleep med i dont sleep,i can not shut down.
these days with meds i only get 5-6hrs a night.
strange but i have heard many with pls need sleep meds and have sleep problems.
 
Aly, I do not feel a change with baclofen and fatigue anymore. I have the usual amount of fatigue that I had before baclofen. Although I must say there are times that I had gotten super sleepy during the day and layed down for a bit to take a nap. This happened a few days ago...I layed down and couldn't wake up! I mean I was telling myself to wake up and I knew my lil one was on the bed with me playing with her ipad while the tv was on. I would try to talk but it was like my words were barely coming out like a whisper and really in sloooooowwww motion. Then I tried to turn my head toward her but couldn't move! My arms wouldn't move! My fingers wouldn't move. Yet I felt so sleepy I would sleep a little more then wake up and be in the same state. I do not know how long this went on but a few hours because when I fully did wake, it was time for lil one to go to bed. So maybe it was about 4 hours!


This sounds VERY familiar--though not for such a long time. Have you ever heard of sleep paralysis? Your mind is awake--but your body is still sleeping, making you unable to move. Mine happens most often when I've been very tired and/or stressed. But--I've never heard of it lasting so long. Read a little bit on it. Mine was seen on an EEG--and the EEG actually showed me in a 'sleep' stage. Very strange--and VERY frightening.

I've gotten to the point that I can make a few sounds when it happens--and my daughter will come move some part of my body that seems to 'wake' the rest up.
 
Patty, you might have something there. I had stuggled so hard to speak. I was trying to get my daughter to tell me what time it was, so if it was only a few minutes after I layed down then it would be ok to sleep longer. But I couldn't hardly move my mouth. And my tongue felt heavy and big! Finally I asked what time it was (so I thought) by really yelling. It came out raspy,slurred and "push the button". She said what? And the effort made me even more sleepy so I drifted back into sleep again till the next time. But the next time I woke I could move and felt like I came directly out of a deep sleep. It was 9:30pm and my hubby had just walked in from doing soccer matches (he referees them). I was shocked to see how long it went on and was afraid I might not sleep the rest of the night. But around midnight I feel asleep like normal and slept my normal way...waking several times when my body was locked in a stretched position. I don't have them often but when I do it always seems to be during the day when I get a 'sleepy' feel and need to lay down for a nap.

Carolyn, I took sleep aids for years. Specifically Ambien. But when it came to the point that it wasn't letting me sleep any more than 3-4 hours, I decided not to spend the money on it. I know successfully sleep about 4-6 hours a night, with bouts of waking throughout, but usually I can get back to sleep. I still do not have restoritive sleep as I wake up fatigued, but I didn't have it with ambien either. I occasionally have bouts of insomnia but not as often as I did when I first went off the sleep aid.
 
sleep paralysis sucks. For me, it's absolutely terrifying because I can't move anything and can do nothing but make slight sounds. It seems like it goes on forever, but I'd imagine isn't as long as it feels like. Apparently, unless one has narcolepsy, it's harmless. Some hallucinate with it as well. I have two types--sometimes I'm having a dream during it--other times, just aware and can move my eyes--just can't move or speak. When I am stressed or over-tired, it's much more frequent. I was afraid to sleep for a long while until I finally asked a doctor what was going on. A few acted like I wqas nuts--but finally found a doc that knew what it was immediately.

If it happens again--ask your family to just touch you--that's usually enough to 'wake up' the body--my daughter would try to talk, but I couldn't answer until she touched or moved me.

I never had it, though, until I took freaking Neurontin. I swear that's a devil drug.
 
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