This Is MS Multiple Sclerosis Community: Knowledge & Support

I used to take baclofen but it didn't do the trick..i had bad side effect like vertigo and nausea...before that i used to take 10mg of diazapam aka valium shich woked wonders on spasticity and anxiety bue then SS would not pay for the drug althoug h quite cheap..i am now using the generic for Flexeril called cyclobanezaprine 10mg upt to 3 time a day...spasms are still there but not as violent...no real side effects....

That's terrific that you're being helped by the HiCy treatment. I (and others like me) will be encouraged by your progress, so please keep us up to date.

I'm not sure where my "newbie" moniker came from...unless it means being new to this web site and forum. I was Dxed in 1976!

True, ITB therapy "may" result in an excessive degree of muscle relaxation, depending on the titration of the medication. This is entirely adjustable. You take milligrams/day orally; my pump dispenses micrograms/day. Also, it's worth noting that any difficulty "caused" by the pump is not permanent disability; it's reversible to baseline with 24-48 hours from discontinuation.

Again, anyone who is interested owes it to themselves and their loved ones to do the research. Don't take our "opinions" as the last word

I agree with the last statement hugely!!!!!! I also meant the newbie status on TIMS not in life.

I find the 48hr thing awesome because I had two Mr. MS in CO both tell me the last thing they wanted to use on me was a pump because if anything came along in the future I may be weakened considerable in the future by using it. Before I did the HiCy the 80mg I was told was the most I should take and then it was on to bigger stuff. I am also finding what I am hearing from the MS docs in CO is about as wrong as possible.

Are you still ambulatory with the pump in?

PS...www.chrishadms.com, I have the whole thing there in detail.

To answer your last question first, no, I was not ambulatory when the pump was implanted. I could stand and bear my own weight, but I couldn't walk. The trick with titrating the medication is to get enough to relax the muscles, but not SO much that you turn into a rag doll. A major plus of delivering the medication intrathecally is that it bypasses the digestive system entirely and goes directly where it's needed. No stomach upset, no fatigue, no mental fog. Your mileage my vary, of course, but in many respects it really gave me my life back.

When you think about it, it makes complete sense that the effect would wear off. I mean, that happens with oral Baclofen, too -- that's why one needs to keep taking the stuff on a regular schedule. In either case, though, stopping cold turkey is bad news and potentially dangerous.

Is the HiCy thing a covered medical procedure? And is it elective, or do you need to be recommended for it? Also, I realize it's a cutting edge therapy and it has its risks, but what exactly does the person with MS hope gain from HiCy? I've read that in the initial trial group, half of the patients for whom it had been effective reverted after two years. Man, anyone who lives day in and day out with MS is a tough guy in my book, but I don't know if I could bear up if I thought I had beat MS, only to suffer a relapse. On the other hand, that's part of the risk. You can't win if you don't play the game. You can't steal second without taking your foot off first!

I had HiCy and I would do it again tomorrow. It is no worse than getting the flu for 3 days but afterwards you are done with active MS. It's covered by insurance and Medicare. They have added Copaxone to the protocol, to be taken after the treatment. The reason is in healthy immune systems in animals, which ours is back to normal after the HiCy, they can't give MS to animals if they have Copaxone first. I proved the theory last November because I had a lesion, it healed, and the other damage in my brain is healing as well. The exact words of my MRI doctor was, "They got something special because in 10 years of doing MRI's I have never seen someone with MS actually heal." I am in Denver, we have a HUGE number of MS in this state, and he has read thousands of MS MRI's.

I tell people all the time and they don't believe me or get pissed at me for telling people but I do not care...If you have RRMS, or SPMS, and you want to be done with this crap, and actually get something back, even if it's just completely resolving fatigue, which it has for me among other things, do HiCy. The day after the treatment I knew I did the right thing.

I am extremely interested in CCSVI as well and look forward to see the MRI's of the people doing it. I know these folks are feeling better too. Now I want to see clinical evidence to see if they are healing. But with HiCy I didn't show healing until 3-6 months afterward. It takes time.

Well, this is all very impressive and encouraging. You said that your MRI indicated that the lesion is actually healing. Are you recovering function as well? Man, that would be good news!

Yes I have improved in EDSS by a half point, others have improved much more. Go to my site and all the info is there to do it under the HiCy section. Some people have went from wheelchairs to running...although I myself have not met them. The doctors have told me about him.

I've been on Baclofen 10mg 2x/day for five months now for spasticity that is most pronounced when I sit for a long time or when I get out of bed in the mornings. With some experience on this now, I believe spasticity is not improving and leg weakness is more frequent during the day.

My question: Some folks say baclofen has worked for them, and others have said that it did nothing. Does anyone have experience with it actually making symptoms worse? After 5 months, I don't know if I should stop taking it or increase the dosage...

Thanks for any thoughts.

Have you shared your concerns with your doc? There are handful of other meds for spasticity - perhaps one of those would suit you better. Beyond that, too much Baclofen would make your legs feel weak; too little wouldn't relieve the tone. Plus, as you know, the effect is not instantaneous. It takes time to come on and time to wear off. And in the meantime you might be feeling the effects of normal fatigue or heat. Speaking from personal experience, I couldn't cope with oral Baclofen at all. Intrathecal Baclofen gave my life back to me.

My doctor first tried to get me on Clonazepam, I believe, but that just seemed like a pretty serious med with some rough side effects. I wanted to try something a bit milder first, and baclofen seemed to be it.

I question if baclofen may cause worsening because my use of it seems to correspond with an increase in leg weakness. That could be a coincidence, but I wanted to see if others had that experience.

I think the operative word here is "worsening." If the effect which you are experiencing from baclofen is transitory (i.e., your leg strength returns to baseline as the baclofen wears off) then the weakening isn't really getting "worse." The baclofen is merely relaxing the tone in your leg muscles, which is precisely what it is supposed to do. Your leg muscles will "feel" weaker.[/i]

The baclofen doesn't help my husband to any great degree, but he does take two at night. We did raise the head of our bed by three inches (Andrew Fletcher suggests 6 inches) and after a couple of weeks, his legs spasms decreased. Worked better than the baclofen. It has been six weeks since we raised the bed. Maybe try and see if it helps.

I had been having horrific pain and spasticity when I went to bed. For the pain I am taking Aleve, and for the spasms baclofen. Once a day, at night, and then maybe off the baclofen again. I had gone down from 3 a day to none following my CCSVI procedure. I credit both the procedure and being off regular baclofen for my freedom from bladder trouble. I think it enhanced my urgency and my loss of control. The FDA knows about that side-effect.

Interestingly, after a few nights of baclofen my once per night bathroom trip came back.

Will try no Aleve if the sleep starts being undisturbed again. See, it's fairly strong and likely not good for my heart (attack May 09).

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I had never heard of the bladder issue with Baclofen, thanks for bringing that to light. I have horrible bladder spasms in the morning and stiffness in my legs, neuro wants me to stay on baclofen and try stretching for legs and oxybuten for bladder. Seems like drug the drug to me.

I have been taking Baclofen for 15 years, and never had fatigue or bladder issues with it. It's great for leg spasticity though. I take 4 x 25mg/day, or as I need them. Wouldn't be without it.

My bladder, fatigue issues were completely resolved with LDN - 3mg

Leg weakness with 4-Aminopyridine (4-AP). A 10mg dose makes me feel crook, so have them compounded into 5mg caps & take 4x5mg daily, or as I need them. Another drug I wouldn't be without.