ALSFORUMS.COM   - ALS/MND Support Group   - PLS Support Group   - PBP Support Group   - PMA Support Group   - Donate to ALSForums

Go Back   ALS/MND Support Group Forums > ALS and MND Support Group > Do I Have ALS? Is This ALS?

Reply
Bookmarks:
Share |
 
LinkBack Thread Tools
Old 01-28-2009, 11:28 AM   #1 (permalink)
Member
Registered Member
Join Date: 2008
City: Centreville
State: AL
Country: US
Diagnosed: 00/0000
Posts: 168
jennibf is on a distinguished road
Default question about baclofen

I have tried and tried to find a Multiple Sclerosis support forum but have yet to find one. NOTHING compares to this website!~!!!! And absolutely nothing compares to you all as a support group!

I was told I have to take the baclofen around the clock to get results and so I've been doing so and I have seen somewhat of an improvement with the muscle stuff, especially the pain. If the myoclonus would go away I would be SO happy.

Anyway, the baclofen is making me dizzy and loopy and instead of sleepy, I am jittery and kind of ....ummmm...LOOPY..and for a natural blonde, this much loopiness is not a good thing.

I want to hear what baclofen does to you all???

Thanks in advance!!! I'm typing about 100 wpm with this stuff in my system. I thought it was supposed to be a muscle RELAXER!!!
jennibf is offline   Reply With Quote
Old 01-28-2009, 11:36 AM   #2 (permalink)
Member
Registered Member
Join Date: 2008
City: London
State: England
Country: UK
Diagnosed: 03/2008
Posts: 452
Jennifer51 is on a distinguished road
Default

Quote:
Originally Posted by jennibf View Post
I have tried and tried to find a Multiple Sclerosis support forum but have yet to find one. NOTHING compares to this website!~!!!! And absolutely nothing compares to you all as a support group!

I was told I have to take the baclofen around the clock to get results and so I've been doing so and I have seen somewhat of an improvement with the muscle stuff, especially the pain. If the myoclonus would go away I would be SO happy.

Anyway, the baclofen is making me dizzy and loopy and instead of sleepy, I am jittery and kind of ....ummmm...LOOPY..and for a natural blonde, this much loopiness is not a good thing.

I want to hear what baclofen does to you all???

Thanks in advance!!! I'm typing about 100 wpm with this stuff in my system. I thought it was supposed to be a muscle RELAXER!!!
if you do a search you should find lots of opinions on the topic. I was given a high dose 60mg per day, and everyone (other health professionals) said it way too high...it knocked me out and relaxed my muscles too much, causing problems swallowing and a lot more weakness in my body over all. Then the neuro who prescribed it said oh drop to 10 mg per day...what a difference ..it does what it should now and my swallow is back to what it should be (I am bulbar). the other posts pretty much say the same, find what is good for your body,,discuss this with your doctor
Jennifer51 is offline   Reply With Quote
Old 01-28-2009, 11:47 AM   #3 (permalink)
Member
Registered Member
Join Date: 2007
City: Langley
State: British Columbia
Country: Can
Diagnosed: 00/0000
Posts: 472
laurel is on a distinguished road
Default

Hi Jenn,
I have MS and have had it for 25 years. I take Zanaflex/Tizanidine. At the MS Clinic at UBC where I go most patients were switched to it years ago instead of the Baclofen. One little study says this, "Sixteen patients suffering from spasticity due to multiple sclerosis were treated with baclofen and tizanidine in a partially blind cross-over study. No significant difference in efficacy was found. The most striking difference was seen in the side-effects: baclofen frequently caused more or less severe muscle weakness and even falling during walking and standing. Treatment with tizanidine produced an apparent improvement of mobility in some patients suffering from moderate or marked paresis associated with a marked spasticity of their legs. Isometric muscle strength did not show any significant changes during either treatment. The different impact of baclofen and tizanidine on mobility and weight support seems to be related to their different site of action".

I really ration out the Zanaflex and it leaves me feeling tired. But it does really help the muscle spasms. Try to use as little as required to address the symptoms whether it be Zanaflex or Baclofen. It is trial and error to find the right amount without feeling side effects, but your body does get used to it over time.
Laurel
laurel is offline   Reply With Quote
Old 01-28-2009, 01:16 PM   #4 (permalink)
Very Helpful Member
Registered Member
olly's Avatar
Join Date: 2008
City: uk
State: uk
Country: uk
Diagnosed: 11/2007
Posts: 1,314
olly is on a distinguished road
Default

hi,i have used baclofen for nearly 9yrs now.
at the start i was on 60mg a day but over the years have dropped it down to 20mg now.
the most common side effect is tiredness.
taking too much can cause muscles to feel weaker(if i have a bad episode of spasms and up my dose i can feel weaker than usuall after)
as i have said many times before you have to choose the lesser of two evils.........spasms or weakness.
try 10mg a day and work upto what relieves the spasms with lesser side effects.
if its not working for the myoclonus you may need a anti-seizure med as well.
i was offered these as my myoclonus was really bad but i was on so much meds and had hypotention,arrythmia that i declined.
olly is offline   Reply With Quote
Old 01-29-2009, 08:28 PM   #5 (permalink)
Member
Registered Member
Join Date: 2007
City: New Bern
State: North Carolina
Country: Uni
Diagnosed: 00/0000
Posts: 418
Sammantha is on a distinguished road
Default

Before any neurological disorder was suspected i was prescribed Baclofen for my severe leg muscle spasms that would wake me at night, not only did they help with that they helped with the stiff pain i had in my left arm and hand..... It helped a lot, then the cramps seemed to wane after awhile..... Anytime they moved to a new area i sure knew it, especially when they hit my rib cage!! but luckily the pain seems to dissipate after time. I had no side effects from the meds. Sam
Sammantha is offline   Reply With Quote
Old 01-29-2009, 08:47 PM   #6 (permalink)
Moderator
Registered Member
hopingforcure's Avatar
Join Date: 2008
City: South Central PA.
State: PA
Country: us
Diagnosed: 09/2007
Posts: 1,110
hopingforcure is on a distinguished road
Default

Hi girls two of my favorite ladies back to back posts. I was thinking about you guys today, and wanted to send a Hello, and good wishes.
Sam so sorry you are dealing with the heart and lung issues, seems like this neuo-muscular stuff can just about do whatever it wants..UGGH.. I am thinking of you and your family.. Please keep me informed whenever you can.
Olly girl I hope you are settled and comfortable in your new home, and the kitten is growing strong and happy. I saw Geo posted today and smiled, was glad to see the rough guy was back... LOL.. thinking of you guys.
hopingforcure is offline   Reply With Quote
Old 01-30-2009, 10:45 PM   #7 (permalink)
New Member (Say Hi)
Registered Member
Join Date: 2008
City: Hamilton
State: Ont.
Country: CA
Diagnosed: 07/2008
Posts: 52
bossman is on a distinguished road
Default

I hear what you say, I take 10 pills a day, and it does nothing but make me dizzy. I am trying to find another pill to take myself
bossman is offline   Reply With Quote
Old 01-31-2009, 10:58 AM   #8 (permalink)
Extremely Helpful Member
Registered Member
Zaphoon's Avatar
Join Date: 2008
City: Springfield
State: Missouri
Country: USA
Diagnosed: 12/2008
Posts: 2,246
Zaphoon is on a distinguished road
Default

Jennifer,

Try looking at www.msworld.org for a good website for MS. Its a forum similar to this in that MS patients share with others their trials, tribulations, symptoms and life' journey with the disease.

It's been quite a while since I've visited that site but found a lot of good information and people on it.

Zaphoon
Zaphoon is offline   Reply With Quote
Reply

Tags
baclofen, go away, muscle, pain, support, website


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools


Similar Threads for: question about baclofen
Thread Thread Starter Forum Replies Last Post
Baclofen kylisa General Discussion About ALS/MND 5 08-30-2009 01:04 PM
Baclofen prometheus General Discussion About ALS/MND 7 03-25-2008 12:47 PM
Question regarding baclofen and quinine acv People With ALS - "PALS" 7 09-01-2006 08:47 PM
Baclofen ronrfc People With ALS - "PALS" 6 11-20-2005 12:09 PM
Baclofen ot Quinine??? terri General Discussion About ALS/MND 3 09-30-2005 12:51 PM


    
   
   
   
  ALSforums - Get help and support with ALS/MND   


no new posts