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-   -   Baclofen - How Much Do You Take? (https://www.neurotalk.org/multiple-sclerosis/66722-baclofen.html)

Debbie D 12-20-2008 10:56 PM

Yeah, I hear you, RW...but as much as I hate these sxs with spasticity, I am so afraid of MJ...esp the fact that's illegal in my state...I'm a wimp when it comes to breaking the law...:( but I am so worried about the pain/spacicity...esp when I read about how MJ has helped so many...wish ther was a clear answer...

kcmom 12-21-2008 03:38 AM

My neuro must only use the typical MS drugs. When I came to him I had trid Zanaflex with no luck. He put me on Baclofen for spasticity and to hep sleep. As it got worse (first my bum right leg, but now my left upper body and back) all he does is pump it up and add more Neurontin too. I was still in horroble pain.

I went to the pain specialist who first added Percocet (10/325 4Xday) and he'e helping more than anyone! He wanted to install the Baclofen pump but my insurance company denied it (3 times).

This week I explained that I have never been on any other muscle relaxer. He was astounded. He gave me an rx to try Flexeril (of all the old time meds) and I feel so much better! I hope it lasts but I dont remember Baclofen ever making me feel this relaxed. Plus, I'm not in the awful fog from taking 80 mgs of Baclofen every single day. For some reason Flexeril wakes me up....!

Just my .02 cents!
kcmom

CayoKay 12-21-2008 09:36 AM

Quote:

Originally Posted by Debbie D (Post 431126)
Yeah, I hear you, RW...but as much as I hate these sxs with spasticity, I am so afraid of MJ...esp the fact that's illegal in my state...I'm a wimp when it comes to breaking the law...:( but I am so worried about the pain/spacicity...esp when I read about how MJ has helped so many...wish there was a clear answer...

yes, Debbie, MMJ helps me a lot, but I worry about getting sent to Hattieville, rated one of the WORST prisons in Central America...

so, pot off the street is out of the question for me... and the unknowns regarding dosage also concern me.

so, my solution is to make marijuana butter, and then cook brownies with it.

I figure out the dosage myself, by experimentation, as it's not like medicine bought at the pharmacy, and getting uniform results without getting stoned off my kiester is my AIM.

because MJ can be different every time.

I try just a one-inch square of the medical brownies, to see the results, and wait a few hours (remember the absorption when eating is MUCH slower than smoking!)

the reason the butter works, is that it's distributed *evenly* throughout the brownies, so the results are the same each time...

http://cannabis.com/faqs/cannabis_re...ipe/index.html

also, this way, there's no visible *pot* around the house, and no suspicious odors of smoke lingering in the air.

I *HAVE* to do this, since MS is unknown in the tropics, Baclofen is not available... (that's about the ONLY thing it's used for) and I am still waiting for my GP to get approval to import a batch of Baclofen for me.

:grouphug::hug::grouphug:

hang in there, Debbie!

SandyC 12-21-2008 12:33 PM

Jim takes 30 mgs three times a day with 30 mgs for break thru pain if needed. We also stretch him daily to keep the muscles loose. I use a massage cream called Spring Chicken that we get at our local garden. You can buy it online too. He also take Tizanidine 4mgs three times a day and valium, 5 mgs two times a day and 10mgs at night. It doesn't give total relief but it's better than nothing. He has extra valium for break thru pain as well. It sounds like a lot and is but Jim can't get up and walk so the meds have to be taken to avoid constriction. We tried other meds like sinemet and marinol but it was too hard on his tummy.

Hope you get relief soon.:hug:

Kitty 12-21-2008 12:39 PM

I took 30 mg. this morning because the pain came back in my right hand (feels like a vice) and right leg. Right now....I'm a little tipsy so I'm not sure I could take this amount all the time. Maybe after a while you get used to it. The pain isn't all the time, though. It might be gone tomorrow and not come back for days. I just never know. I think I might make an appointment with the Neuro for one last visit before the end of the year (I lose insurance coverage after 12/31) and to see if there might be something else I can take in addition to or instead of the Baclofen.

Desinie 12-21-2008 02:10 PM

Do any of you notice the spasticity is worse when the humidity is high?
I take 5mg of Baclofen @ bedtime and occasionally 5 mg during the day as needed. I'm worried about feeling weak from it as I have that symptom normally anyhow and don't want to make it any worse.

Kelly, Do you notice increased spasticity since you started LDN?

Kitty 12-21-2008 02:45 PM

Quote:

Originally Posted by Desinie (Post 431372)
Do any of you notice the spasticity is worse when the humidity is high?

Kelly, Do you notice increased spasticity since you started LDN?


Yes, humidity has a lot to do with whether or not I will have spasticity. And it's been very humid here lately....raining almost every day. I fully believe that's what's making mine act up.

I did notice an increase in spasticity when I started LDN but it went away within a week. Just since the weather has been so rainy it's started up again.

I'm hoping that this week it will calm down a bit since it's turning colder and dry.

tkrik 12-22-2008 10:38 AM

Kelly, I think you are right about the humidity. Mine tends to be worse during humid times as well as weather extremes (hot/cold). It's been cold where you are too and that may be making it worse for you.

Hang in there.:hug:

SandyC 12-23-2008 01:45 AM

Quote:

Originally Posted by Riverwild (Post 431118)
I've heard that too! :)

Seems I too have heard something about mj and helping spasms. :cool: :D

Fear not DebbieD, Illinois has the medical mj law in their hands and putting it on the table. We should hear something soon, maybe by February? They are putting together a pilot program for starters. Michigan approved it this election so we should be right behind them. It's already been approved to vote on in the Senate. Wisconsin is also waving the flag for medical mj.

Here's a website with good info on medical mj and various states who have approved it and those in the process. Jim and I are members and look to this site for current information.

The National Organization for the Reform of Marijuana Laws "NORML"

Here is a short description of how they feel about medical marijuana:

Critics of the medical use of marijuana say (1) there are traditional medications to help patients and marijuana is not needed; and, (2) permitting the medical use of marijuana sends the wrong message to kids. How do you respond to these concerns?

For many patients, traditional medications do work and they do not require or desire medical marijuana. However, for a significant number of serious ill patients, including patients suffering from AIDS, cancer, multiple sclerosis and chronic pain among others, traditional medications do not provide symptomatic relief as effectively as medicinal cannabis. These patients must not be branded as criminals or forced to suffer needlessly in pain.

Dronabinol (trade name Marinol) is a legal, synthetic THC alternative to cannabis. Nevertheless, many patients claim they find minimal relief from it, particularly when compared to inhaled marijuana. The active ingredient in Marinol, delta-9-tetrahydrocannabinol, is only one of the compounds isolated in marijuana that appears to be medically beneficial to patients. Other compounds such as cannabidiol (CBD), an anti-convulsant, and cannabichromine (CBC), an anti-inflammatory, are unavailable in Marinol, and patients only have access to their therapeutic properties by using cannabis.

Patients prescribed Marinol frequently complain of its high psychoactivity. This is because patients consume the drug orally. Once swallowed, Marinol passes through the liver, where a significant proportion is converted into other chemicals. One of these, the 11-hydroxy metabolite, is four to five times more potent than THC and greatly increases the likelihood of a patient experiencing an adverse psychological reaction. In contrast, inhaled marijuana doesn't cause significant levels of the 11-hydroxy metabolite to appear in the blood.

Marinol's oral administration also delays the drug from taking peak effect until two to fours hours after dosing. A 1999 report by the US Institute of Medicine (IOM) concluded: "It is well recognized that Marinol's oral route of administration hampers its effectiveness because of slow absorption and patients' desire for more control over dosing. ... In contrast, inhaled marijuana is rapidly absorbed." In a series of US state studies in the 1980s, cancer patients given a choice between using inhaled marijuana and oral THC overwhelmingly chose cannabis.

As to the message we are sending to kids, NORML hopes the message we are sending is that we would not deny any effective medication to the seriously ill and dying. We routinely permit cancer patients to self- administer morphine in cancer wards all across the country; we allow physicians to prescribe amphetamines for weight loss and to use cocaine in nose and throat operations. Each of these drugs can be abused on the street, yet no one is suggesting we are sending the wrong message to kids by permitting their medical use.

CayoKay 12-23-2008 06:54 AM

ahhhhhh, that's a well-written and very informative piece Sandy, thanks for posting it!

it's the best explanation I've seen for why orally-administered MARINOL doesn't work.

for me, the oral administration of MJ, (via brownies, with all natural cannabinoids intact), it *IS* the slowness of absorption I want... for overnight usage, and control of severe spasticity.

I really don't want to feel "stoned" all the time, but I just HATE to wake up with my legs in deep spasm.

like Kitty, I only have intermittent spasticity (of the LARGE kind), so my aim is to not wake up frantically clutching my foot or leg, and yelping for God to have mercy.

the minor muscle tightness I can deal with, using careful, gentle stretches, and self-massage... without medication...

when I hold still for a while, or nap, or sleep at night, I tighten up a lot, but it's manageable, and it's not DIRE AGONY, like the major spasticity I experience, often during sleep.

Spasticity is a condition in which a muscle has increased tone and resists being stretched. Although the details of how muscles become spastic are still not completely understood, stretch reflexes are known to be involved. When a muscle is stretched (e.g., when the opposite muscle contracts), specialized receptors in the muscle tendons report the amount of stretch to the nervous system. In turn, the nervous system tells the stretched-out muscle to start contracting. In some neurologic disorders, including cerebral palsy and MS, stretch reflexes can become hypersensitive and initiate muscle contractions inappropriately. The affected muscles feel tight or stiff and are prone to painful spasms.

Normally, nerve signals from the brain and upper spinal cord help control the stretch reflexes, inhibiting them when necessary, to allow appropriate muscle contraction. In MS, lesions in the nervous system interrupt nerve signals, and it is thought that MS-related spasticity probably arises when the lesions block these inhibitory signals from the brain. Spasticity affects up to 60% of people with MS, and adds to existing problems with mobility and muscle weakness.


http://www.mult-sclerosis.org/news/A...icityInMS.html

MJ when orally administered is also helpful with my... um, what's the word, clonus? well, I was close, it's MYOCLONUS:

http://www.mult-sclerosis.org/myoclonus.html

hugs and love to all of you experiencing spasticity (be it major or minor)


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