Baclofen

[Algis]

I wrap it in a towel and put it at knees height; behind me (I sleep exclusively on my right side).

It is a natural soap, if that is helpful... Don't ask me the theory behind; I just have been surprised myself...

[betsy1]

My little bar of soap is a hotel notion, complete with wrapping , between my bottom sheet and the bed protector, not in direct contact. I'm so glad there are a couple of others of us out there thinking 'outside the box'.... lol
2 years you say? I'm loving this. Do we have a new or perhaps a truly old thought here? I doubt my gratis bar of soap has anything like Epsom salts.... I used it cuz it has a small foot print (no pun).
I looked into Niacin today... I'm thinking that a venous dilator might be a good idea to clean out or perhaps shorten the spasm time....I'm still hanging to the thought this is just a phase in getting back to a more healed place in my life....before spasms at night. I got my walking poles,,, now to wait out the rain and work those legs into movement,, without fear of a stumble.
I do know for sure that after this dialogue there will be no Balcofen in my diet,,,I've been able to drop all the other pain modifiers since my venoplasty,,, my body is really happier in this less drugged place. Back to my warm sox and I'll keep my silly bar of soap right where it is.

[eric593]

In terms of medication. My main neuro was very reluctant to give me baclofen because in his opinion it causes muscle weaknesess, a problem that I did not have.

Baclofen alleviates spasticity, but the spasticity often masks muscle weakness by keeping the muscles unduly tight. So it's not that baclofen causes muscle weakness, it just removes spasticity that often controls the underlying muscle weakness which becomes evident when spasticity is no longer keeping the muscles rigid.

[bluesky63]

You've already had fantastic input on this, but I wanted to add a little too. A few years ago I had a great PT person who said her philosophy was that pharmaceutical solutions should be the *last* thing you use in a lifelong disease (or in general, really).

For spasticity, gentle stretching can make a big difference. Many people find (as I did) that the stretching has to be done in water. I don't have access right now to a pool so I just stretch my legs in the bath.

Regular exercise, which is quite possible for people who use wheelchairs too, makes a difference. But you have to be so careful to find the right balance. I actually wondered, Betsy, if you might be walking more since your CCSVI procedure and maybe not stretching -- for us, it's the equivalent of a runner needing to stretch properly when they run a 10k.

The info about magnesium, etc., is also great. Does anyone have any thoughts about quinine? One of my neuros suggested tonic water at bedtime to help at one time.

After my procedure I cut back on baclofen, which has actually been a good med for me, from 70 mg a day now down to 40. But movement, regular stretching, balanced nutrition, are important. And I think we should treat our daily walks, rolls, whatever m,ovement we can handle as though it's our own 10k, with the hydration and and respect and tender loving care that any athlete should get.

[elliberato]

SPASTIC----MY NEMISIS!!!!!!!!! I AM BEING TORTURED BY IT!!!!!
I did the liberation in March of this year. Call me one of the losers. Since then, at which time i was walking, i am in a scooter all day with the exception of leaning on a walker at home. Usually for just going to bathroom.

First I did the homeopathic route. Magnesium, calcium, zinc, you name it. No help. Then the LDN for three years. All the crabs, etc. Exception Tysab. Nothing. MRI's show no progression for the last two years yet I went from walking to not. So much for MRI's.

Got so stiff i ended up in emergency from pain. Gave me vicodin and baclofen and said to hit the road. Nice and that was the nuero concil. nicer. Vicodin did nothing.

Baclofen made me so tired I was loopy and weak couldnt walk anyway.
Eight weeks later I am in the same boat. I did however go off all meds and mentally have never been clearer or less fatigued. Unfortunately though the night spasm are so bad my legs shoot straight out and the lumbar muscles squeeze so tight the pain is insane. This happens every hour or so. I tried sleeping without the blankets, drinking baking soda, you name it. When morning comes I have two leg boners and cant get out of bed without rolling on to the floor first. Hard in all the wrong places. Once I get upright for 3 or 4 hrs it gets better. Blood flow??

Working with Chiro. Helps for a day or so then right back. PT not helping.

Now I am stiffer than ever but mentally clearer than ever. Which is scary because I am thinking so good that I am thinking some dark thoughts. I should be walking but the spastic nature wont let me. I will give the soap a shot for sure. Even if I have to stick it where the sun done shine. I am desperate. Its like entrappment. My mind says go. My body says no. Such torture. 42 years old -4 kids and in a chair all day watching them play. More I think of it. Two bars of soap.

Did I mention MS sucks?

[bluesky63]

Spasticity is something that makes you insane. It is a neverending chronic pain, a toothache inside you that never lets up. At one point I was on 160mg of baclofen a day for it. After my procedure I went through two periods of strongly increased spasms; both times I was sick but thought I would go crazy from not being able to get away from the muscle spasms. A short-term rx of diazepam helped, anti-inflammatories helped, soaking in epsom salts helped,

I always get worse at this time of year no matter what and need to increase vitamin d. I don't know what to tell you except not to give up and to see if you can get a referral to either a good physical therapist or a rehab doctor. There is a place to use meds to relieve the spasms in the first place so you can get initial relief and then work down from there.

Another thing to check is whether you have any kind of underlying virus, infection, dehydration, etc., which can also affect stiffness. For me anyway, spasticity is often the first clue that something else is wrong.

I am so sorry you are dealing with this. Cold weather can also bring it on. So many things can bring it on. Maybe make a list of every single thing and systematically work through it (while trying not to writhe in pain!).

I haven't read this page in a while but I liked it years ago -- anyway, here it is, for what it's worth.

http://www.wemove.org/spa/

(P.S. I have three kids and have been in a chair for eight years -- I completely sympathise!)

[CCSVIhusband]

SPASTIC----MY NEMISIS!!!!!!!!! I AM BEING TORTURED BY IT!!!!!
I did the liberation in March of this year. Call me one of the losers. Since then, at which time i was walking, i am in a scooter all day with the exception of leaning on a walker at home. Usually for just going to bathroom.

First I did the homeopathic route. Magnesium, calcium, zinc, you name it. No help. Then the LDN for three years. All the crabs, etc. Exception Tysab. Nothing. MRI's show no progression for the last two years yet I went from walking to not. So much for MRI's.

Got so stiff i ended up in emergency from pain. Gave me vicodin and baclofen and said to hit the road. Nice and that was the nuero concil. nicer. Vicodin did nothing.

Baclofen made me so tired I was loopy and weak couldnt walk anyway.
Eight weeks later I am in the same boat. I did however go off all meds and mentally have never been clearer or less fatigued. Unfortunately though the night spasm are so bad my legs shoot straight out and the lumbar muscles squeeze so tight the pain is insane. This happens every hour or so. I tried sleeping without the blankets, drinking baking soda, you name it. When morning comes I have two leg boners and cant get out of bed without rolling on to the floor first. Hard in all the wrong places. Once I get upright for 3 or 4 hrs it gets better. Blood flow??

Working with Chiro. Helps for a day or so then right back. PT not helping.

Now I am stiffer than ever but mentally clearer than ever. Which is scary because I am thinking so good that I am thinking some dark thoughts. I should be walking but the spastic nature wont let me. I will give the soap a shot for sure. Even if I have to stick it where the sun done shine. I am desperate. Its like entrappment. My mind says go. My body says no. Such torture. 42 years old -4 kids and in a chair all day watching them play. More I think of it. Two bars of soap.

Did I mention MS sucks?

When you were liberated, was it JUST your jugulars done? If yes, could explain why you still have tightness in your legs after liberation.

How about your azygous?

I bet there's going to be a link to where stenosis is, and what symptoms improve ...

in my wife's case, when her azygous was ballooned, she got relief from tightness in her legs, numbness in her legs and better balance/walking ...

[betsy1]

*For spasticity, gentle stretching can make a big difference. *


Yoga has been a standard in my life for 40 years, it helps. it helps me greatly....
NIGHT 6 with the bar of soap. Alls going fine....
the 5mg of diazepam is not effecting my daily life, I've been using it since the mid 1980.seems my game plan isn't going to change as I heal.
thank you all for the input.
and yes MS sucks....

[elliberato]

THANKS all for the replies. I can rember the balloon in my chest! Man was that uncomfortable. Seems I have a malformed valve. Veterbral veins were messy though and no remedy yet. After listening to Dake and reading Sal's post that SPMS treatment would be unpredictable I think I am going to take the Kamikaze's advice and crawl up a fat mans ass. Hope some of Algis's soap is there.

[bluesky63]

Did he say that?

Forgive me for jumping in again, but if CCSVI had never been discovered, there still would have been ways to work on spasticity. And for people with cerebral palsy, for instance, there is no CCSVI. We have to look beyond the veins.

I'm not trying to be pedantic, just wishing I could help.

Sometimes I personally get the best help from groups that deal strictly with severe disability and people who use wheelchairs, not from people with MS. The perspective is very different. If you're interested let me know.

In the meantime, all the best -- wherever you are --

[1eye]

Did he say that?

Forgive me for jumping in again, but if CCSVI had never been discovered, there still would have been ways to work on spasticity. And for people with cerebral palsy, for instance, there is no CCSVI. We have to look beyond the veins.

I'm not trying to be pedantic, just wishing I could help.

Sometimes I personally get the best help from groups that deal strictly with severe disability and people who use wheelchairs, not from people with MS. The perspective is very different. If you're interested let me know.

In the meantime, all the best -- wherever you are --

I think it is necessary to remember that bad blood flow causes damage, and some cannot be fixed. Fixing the bad blood flow can help some, but for some things it's like growing a new foot. Don't hold your breath. Nerves heal *very* slowly.

But while you are breathing easy and not asphyxiating yourself patiently waiting: what to do? Well, there are many things, and I bet you find some of them easier since Liberation. I am sympathetic about watching your kids play and grow up sans a healthy parent. My kids have all but grown up, and I missed quite a bit of it. But I can still remember better times. My son got out old photos for his yearbook, and we had a blast looking at them. I remember some of it with pain, but he remembers only good times!

I have been blessed, that even though I cannot play guitar anymore, I still remember a lot of music, and have a great time trying to translate what I know to the piano. It is a lot less frustrating, since I have begun to learn and relearn, and there is no comparing my blunders to what I used to be able to do. It's all good. So I agree completely with your frustration, but to level your playing-field against yourself, try to do something you never tried. Of course it would have been easier before 'MS', but it's a clean slate, and you can still grow, and become. "He not busy being born is busy dying." Jimmy Carter quoted that Bob Dylan song when, as an older man, he decided to become President. He is still challenging himself.

All the best to you and your family: remember, you are going to be much older, possibly wiser, and there are no good alternatives - Spike Milligan said, "Life is a chronic disease curable only by death." So if you can't cure it, improve it!

My son watched the CTV piece on Zamboni, and though he has vetoed other more risky approaches, he approved that one right away. OK, it doesn't work for some. But his buy-in was worth all the tea in your party.

For spasticity, and this comes from many who are a lot worse off than either of us, pot smoke works wonders. A little bit goes a long long way.

[Cece]

Did he say that?

Here is what he said:
http://www.thisisms.com/ftopicp-145085.html#145085

He also recently said that the benefit of ccsvi treatment is most compelling in people with RR MS:
http://www.thisisms.com/ftopicp-144686.html#144686

It's seemed likely that benefit is greatest in people with the least neurological damage and that PP MS is a group that accumulates damage quickly and SP MS is a group that has been fighting the MonSter so long that they've accumulated more damage as well. I do not however see this as a reason for any group to not go for CCSVI treatment, but for setting expectations after treatment.

[bluesky63]

Thanks for the links. I wasn't clear at all. I was actually wondering about Marc's input. (!!) Perfect example of how garbled the internet gets.

I need to stop posting. I've had a bunch of fudge and coffee this morning and I can't think.

[elliberato]

CeCe you are a machine!!!

here is the fat man part. Taken a little out of context!

Some Thoughts on the Current State of CCSVI | Wheelchair Kamikaze
Jun 13, 2010 ... Posted by The Wheelchair Kamikaze at 11:03 PM ..... I would crawl up the ass of a fat man if there were evidence it would help my condition. ...
http://www.wheelchairkamikaze.com/.../s ... ccsvi.html -