HELP! should i take it?

[CagedBird]

Wow so after reading every thread about baclofen, I am VERY scared to take it. Today, I visited a pain management doctor. He was one of the overseers of my rehabilitation therapy right after my stroke but that was 6 years ago so today it was kind of like a new start. I told him about the soreness in my affected wrist and the tightness in my arm and hand. His first reaction was that I need baclofen so now I have more medication to take. I am supposed to take 1 pill 3 times a day. Atfirst I was so happy and I could not wait to start tomorrow finally the pain will go away and my arm will stretch BUT after reading the history about baclofen on here, I am scared to death to take this medicine! I really do want to take it because this will be the first time I try something that will help the effects of my stroke. On the other hand, as some of you know, I move into college tomorrow and I start class Wednesday. I have read that most of the side effects everyone experienced from taking baclofen was dizziness, seizures, sleepiness, and upset stomach. There is no way I will be able to function as a first time college student if I am throwing up sleeping and having seixures all the tme. It will already be worse enough that I will be away from home in a different surrounding walking in the heat to and from long distances to get to classes. I take Keppra even though I have not had a seizure in about 2 years now. But should I start this baclofen? Im supposed to be getting a brace made for my wrist soon so even if I dont take the baclofen, there is still hope. and I understand that once you start baclofen, you should not abruptly stop it. Should I trust the doctor and take the medicine? I have heard all of the negative reviews about baclofen but did anyone have success with it and no side effects? Please help!

[lady k]

I took bclofen for over a year, I did have stomach problems, but was intermittant not constant, I lost weight because I easn't hungry most of the time, so not throwing up but it did affect my stomach, i stopped it wen I was given a stronger muscle relaxant for the torn rotator cuff, and didn't have a problem, I can't say it din't help, because even though I have some spasticity, it is not as bad as most have. you could try for a while then if you are not happy on it, have the doctor taper you off, i think the seizers are if you suddenly stopped taking it, but you have to weigh the benefits and I don't see how you can do that without a try. you are in my prayers. glad to see you back on line here.

[merichsen]

I took baclofen for over a year and the only time it upset my stomach was if I took it wihout eating anything. I did have a seizure but that was because I stopped taking it abruptly.

My side effects were because I did what you are not supposed to do. If I hadn't I was tolerating it fine and it worked very well.

Good luck with your decision and in school.

 

Maria :friends:

[arogers]

I took Baclofen several years ago - 1998 - to control the pain caused by a condition called Trigeminal Neuralgia and the only side effect I can remember was sleepiness. Of course, I took several other medications that could cause the same thing! I had no seizures and no nausea. Ther per centage of folks who take baclofen and who are posting here is small, and unfortunately we are quick to jump on the band wagon if we have experienced side effects, so I would suggest, as the others have you need to try this med for yourself! Good luck with college - the Serenity Prayer is a great one for you to take with you!

[dstraugh]

Katrina,

 

I have not been prescribed baclophen (yet anyway). From all that I have heard, plus what the ladies before me stated, you should be fine as long as you follow your doctor's/pharmacy guidelines in taking the meds (such as taking with food). If you experience side affects that do not decrease, be sure you contact the doc BEFORE you discontinue the med so you don't experience the seizures.

 

Good luck as you head off to college life.

[Phyllis4732]

Katrina sweety, since I am the weird one in this group of many, and have not taken the medication (nor many others) I also have some things for you to think about.

 

#1 You are right, you are going to be "alone" in a new situation and yes, if you did not have this pain, things would be a little better but

 

#2 This is not a medication for something like high blood pressure, a heart condition or a medication for seizures. Not taking it, while you may have the pain which is obviously not fun, will not do you any harm - except the discomfort.

 

Because I am sensitive to many medications, I take very little. Now, if you want to try it anyway, why not wait until you have some time off at Christmas etc. You do not want to ruin your vacation but you will also feel more comfortable being with family etc. who would see how you are. In the meantime, this will give you a chance to see what the new brace will do. Then, if you really are miserable you can always make the decision.

 

You have choices. Everyone is different. This is something you must look at where you have to do what is right for you after looking at all sides of it.

 

BTW, I've been thinking that today is the start of your new life. I know things are going to go well for you. You are sweet, intelligent and unfortunately have experienced more than someone your age has had to.

Grab the gold ring on this merry-go-round called life and have a ball with it. Your time has arrived!

 

(Granny) Phyllis

[Mema]

Phyllis has excellent advice. If you are anxious about this med, put off taking it until you are more comfortable. Get into the college routine and enjoy the new experience.

 

The other Granny,

Vi

[fking]

Continue to check with and ask your doctor(s), but for me I was put on Baclofen right from the first day of my stroke, remained in the hospital 4 months and when I got out I was prescribed it and to this day I am still taking it. Never had a minute of trouble by taking Baclofen for almost 4 years now.

 

Let them evaluate your case with this drug.

[Sudz]

Katrina

I have taken Baclofen for 5 yrs now 1 pill 3 x/day

My only side effect was more fatigue

My pcp & I decided we would quit thenoon pill for fatigue about 6 mos ago fatigue may be better

I quit drinking pretty well completely even a glass of wine seems to affect me more than it used to I blame the Baclofen

I certainly haven't had ANY of the horror=type of side effects

Again common sensewe all tolerate differently

Do not let your prescription run out so u r forced to quit cold turkey

Watch the beers follow your gut feeling

My physiatrist tried a different muscle relaxant on me it started with a D I hated it it made me ukky right away

Jusyt my 2 cents

 

[kanderson]

hi katrina, i think you should get settled into your new routine at college, try the brace and see if it helps before starting the drug. you have gone without it this long, wait alittle longer before starting it,then take it correctly and follow the pharmacy's information on how to take it. i wish you good luck in your new college life. we all are thinking of you and hope you get settled in ok.

[bstockman]

Hi Sweetie, all excellent advice. You may want to try the brace first, get settled in a bit first as you will be anxious and busy until you are comfortable and in a routine. I think knowing wbout medication and "POSSIBLE" side effects is a good thing. It also can make us anxiously aware of side effects and put it in our heads.

 

You will probably have a break for Thanksgiving or some days at home when you are comfortable to try the new med, or after you are more settled in at school.

 

You may find the new brace ... activities keeping you busy and studying you may be less aware of the pain.

 

As Phyllis said...you have been living with it this long.. less pain would definately make life more comfortable, but waiting a little while to start it is an option.

[mljmsw]

Hi caged,

 

Iam post-event 5 years 8/06/07.

 

I have taken baclofen the last 3 years. I have experienced constipation the negative

 

I'm not on a high dose as I don't want my intestines to slow down even more.

 

When I forget to take a dose my spasticity increases.

 

Your courage to start college is inspiring. I went back to work within 6 months of my stroke. It keeps me productive and focused. I'm a school social worker in an elementary school. I couldn't function as well as I dowithout the baclofen. It hasn't taken all spasticity away but it helps considerably. The caution is to follow all your doctors directions. Never change your med schedule without checking with your doc first.

 

 

 

Ifyou are thirsty ask Him and He will give you living water.

 

Bless the Lord oh my soul and all that is within me bless His Holy name.

 

Godspeed at school. Enjoy as much as you can. Thank and praise Him for each good minute.

 

Make a list of I haves instead of I used to's or I wish I could's. . . That has been so helpful in my recovery.

 

You will recover every day for the rest of your life. You're young it sounds like. You've a lot to live.

 

 

 

mljmsw

 

right carotid dissection 8/06/02

 

[CagedBird]

Thank you all soo much. I had been waiting on responses and I really do appreciate everyone's advice. I have sided with Phyllis. I think I am just going to wait until a later time to start the medication and try out the brace in the meantime. Thanks everyone again! I feel so much better

[pprovost]

Hi Caged,

For what it's worth, my experience with baclofen and also zanaflex was extreme sleepiness. I used to fall asleep reading the morning newspaper. Phylis gave you good advice and from what I know aboput college life, it is something you mat want to wait to try during holiday break and definitely not during your mid-term exams. Give your education its best chance possible. Tylenol may help pain without compromising your academic year.

 

I admire your courage. Good Luck

 

Pat

[lisas]

HI CAGED BIRD,

 

RACHEL TRIED BACLOFEN BUT IT KNOCKED HER FOR A LOOP. SHE WOULD PASS OUT SITTING UP IN HER CHAIR. OF COURSE RACHEL IS ONLY 90 POUNDS AND 4'5" TALL. MOST PAIN MEDICINES SHE TRIED TO TAKE KNOCKED HE OUT OR MADE HER DELUSIONAL. BUT LIKE STATED ABOVE, EVERYONE IS SO DIFFERENT. I TOO WOULD WAIT UNTIL YOU HAVE EXTRA TIME TO ACTUALLY TRY THIS MED FOR A COUPLE OF DAYS. IT AFFECTED RACHEL RIGHT AWAY, GOOD LUCK SWEETIE. :friends:

[bella]

hi,

I have been on baclofen since my stroke(7 years ago). because of fatigue we've changed doseages so much. I'm now on only 40 mg. a day. I really don't feel like it works on my tone because I felt the same no matter how much I took(except taking less does make me more awake). I hated zanaflex(zombie) but can tolerate baclofen. I have sooo much tone...drives me crazy! hope the brace works in the meantime.

 

good luck with your treatment :Clap-Hands: !

Beth

 

[Guest faithycan]

hi,

 

my husband has been on baclofen since January, right brain stroke. Let me tell u, the lyrica almost killed him but the baclofen has been a good send. To each his on-everyone's body is different. Good luck and may God bless.

 

Day at a time,

A friend of Bill's

 

Faith

[ksaul]

hi just another quick thought - you have been getting real thoughtful responses. i tried baclofen - it made me very tired and did not help that much. i have found that botox helps me with the pain and spacicity in my arm and hand. just another option. wishing you the very best success at school! cheers - kathy

 

[Dora]

wasn't baclofen almost taken off the market by the FDA a few years back due to the extreme side effects?

seem like i remember something like that being said.

anyway...... google it!

[pprovost]

Hi Cagedbird,

If your doctor can promise you that he/she has considered baclofen the best option in your individual case, you may want to take it even though some of us did not find great results. however be proactive by noting and advising your doctor and pharmacist of any side effects that disturb you. If Baclofen is a real bomb, your doctor may refer you to a neurologist who may have experience treating patients with other medication or therapy.

I figure that my doctor trained many many years to do her job. I trained zip. It is a no brainer whose advice I will follow.But as patient I have no qualms at questioning treatment if it makes me feel worse than before. It is up to the doctor to justify the treatment. If he sells it to you and you do better on it then it becomes a win/win relationship.

Hope you find peace with this soon.

Pat