Anyone else taking Baclofen? Every day is something new and not in a good way.

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jennibf

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Just curious what kind of results you've had with elimination of cramps. One had me up for an hour and a half last night and today that leg is "tired" and my knees (both) hurt. So. Strange.

I called in and told them I needed something so that the cramps wouldn't wake me up as they did last night. Some days I drive for several hours and already have to drink coffee just to stay awake, sleep deprivation would be very risky.

Does any of this leg stuff sound familiar?
 

rose

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Jenn, there are actually a couple of new/recent threads on the forum about Baclofen... Personally my doctors don't want me to take it, so no personal opinion as to how well it works.

You might try tonic water as it has quinine in it. Its available diet and regular (and with gin or vodka LOL, but not while driving :) ) It does help me with cramps, not as much as when I was on a quinine drug, but without the possible negative side effects of some medications.
 

lydia

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Hi Jenn,

I have experienced some serious issues with cramps that I probably described here sometime. I begged my GP for something and his nasty nurse said for me to take motrin. I was already up to 12-16 motrin a day for soreness, so that wasn't working. Then I begged neuro for something and she gave me lortab of all things. Doesn't work for the cramps or the serious soreness, but does help with a good nights sleep. What I finally had to do: bedrest. I swear by it. I just stopped moving as much as I could for 24 hours. Not practical, I know. I was experiencing stretches of cramps; I would go for hours in one day, with more than 20 killer cramps per hour. Sometimes they started and continued during the night. Those were the worst. I would have days on end where I would have the nasty long lasting and repeating cramps for hours at a time (the cramps would last for like 30 seconds to a minute, but would keep repeating over the course of a few hours). Out of desperation and exhaustion, I finally just lay down on the couch and didn't get up except for bathroom visits. Three times I have just imposed bed rest, and it seemed like it worked....the episodes stopped and now I just get the regular garden variety of cramps here and there during the day, and very rarely at night.

I was going to try and get Baclofen for the stiffness/soreness I experience but am not so sure now that I read others' posts. I have found the cramps return when I am too physically active for a few days on end. If I rest alot I keep them at bay. Coincidence? Maybe...but working for now! Probably didn't help but wanted to share-

Lydia (latest diagnosed: BFS and low B12)
 

sdsyd

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HI Jenn-

The Baclofen worked great on my cramps, however I had a rare reaction to it- bronchospams that landed me in the ER with difficulty breathing. Please note that this is a RARE side effect. Otherwise, I would still be taking it, for sure. Diazepam works ok for decreasing the cramps in my case. I tke 2.5 in afternoon and 5mg an hour before bed. Hope this is helpful.

Cindy
 

jennibf

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Thank you all for the replies! I am kind of concerned about the baclofen given my history of heart rhythm issues and sometimes I wonder if doctors even read the charts? I will look into that drink and see if these cramps progress. I am SO DARNED frustrated because every single day it is something else. I am almost afraid of what each day will hold symptom wise now...after two months of changes and yet I know each day also holds so many more good things in life, too. Does that make sense?

Again, thank you so much!
 

jennibf

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Cindy,
Yes, it's helpful! My mother called tonight (she's called every night lately, unfortunately she is like me and looks up symptoms and all) and asked me what the doctor did and when I told her about the baclofen she said, "OH, but what about your heart?" because while my heart is "cured", she will always be afraid that something will make it bad again. I feel so bad that I have even told her all of this now...and my posts just keep changing directions... :) but anyway, thank you so much!
 

rose

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Jenn, see if the tonic water helps. Some feel its an acquired taste, other people like it right away. I just mentioned that there is diet and regular because for some reason, its often times mistaken as being the same as club soda and having no sugar. Its not the same at all, it does have flavoring, and regular has sugar. Its good chilled on ice with a lime :) There's no caffeine so its ok for drinking before bedtime.
 

Jennifer51

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I take baclofen for stiffness, but long before I started with the drug, I stated to drink Tonic water for cramps and it worked a treat...so now I drink it all the time...I hate the taste of it so mix it with fruit juices or anything that makes it taste better...not alcohol...cant drink that with baclofen...One word of advice with tonic water though...get a good quality one...like schweppes...My daughter bought a store make one, and it did no good at all...reading the labels, it seems that the store own named stuff is often Quinine flavouring, and you need the real quinine as in schweppes. I now live on the stuff and hardly ever get cramp.
 

Al

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GNC health food stores sell a product with Quinine in it called Leg Cramps I believe. Go to www.gnc.com and type leg cramps in search. Never tried it but may help you.

AL
 

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Two years ago i was experiencing really bad leg spasms, especially at night. I mentioned it to the doc as i was going because i had strep throat. He advised me to drink more water. Then when i started to see a surgeon because of long term lymph node enlargement i told him about my leg pain which was excruciating, plus i would wake at night with lower back spasms that radiatied around my waist. He prescribed Baclofen. That was back when i did not ask what things were, i just took them. It helped so much that on my next visit he could tell my legs and arm were not as hard feeling or looking. I only had to use one bottle and even though i get cramps now and then i dont get them like i used to so i am happy about that. I had no side effects from it. Sam
 

CindyM

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Rest, and proper help with breathing, and (yes) quinine help my cramps. It is a three-legged stool. If I am short on any one commodity I go into spasms like you would not believe!
 
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