Spasticity woes.

[monkeybus]

So many times, I feel I've got the old spasticity cracked. I've been through umpteen medicines, and I know by now not to be so complacent.

The spasticity always creeps back no matter what I do or take to try and keep it in check.

Was back in October last year, I ramped up my Gabapentin use. Over Christmas/new year, I was taking 6-9 grams per day. It worked (for spasticity), just don't ever stop, or cut down.

I stopped on Monday. It was that or take even more. A viable option, I get as much as I want for free.

Mostly though, I stopped because the spasticity was getting worse.

This morning, I went back to one of my original drug cocktails from several years ago. 10mg Baclofen, 2g Piracetam, 2g L-threonine and 2mg 4-ap-3-meop. Repeat every 2-3 hours.

It works. Can balance, manage a straight line, foot-drop greatly improved. Cannot really argue with the old up/down stairs walking test either.

I posted before how whatever I take "stops working". Doesn't help if what you take is an addictive sedative like Gabapentin.

Anyway. The current combo will be good for a month or so until I have to ramp up the dose or change to something else. I considered going back on old-fashioned 4-ap. I'll keep that in reserve for now.

Is this just me? I'd be perfectly happy to stick with the one medication. Thing is, I can't.

[SongStream]

Did I read you correctly when you say you increased your Gabapentin to 6-9 grams? My maximum dosage is not even 1 gram (900 mg). I take 300 mg of Gabapentin for neuropathic pain and 60 mg of baclofen for spasms but only in the evening due to the drowsy effect.

You piqued my interest with L-threonine as I did not know its use in treating spasticity.

Piracetam is not approved for any medical use in the U.S. Is 4-AP -3-MeOP similar to Ampyra ? Results with MS patients have been positive but I question its longevity and cost even when compounded.

[monkeybus in reply to SongStream]

Gabapentin dosage is correct. Every time I see my neurologist he just asks if I want any more.

I'll give it a rest for a month or so then just 300mg will get me completely stoned.

Piracetam, it's used to treat "spasticity of cerebral origin", as is Modafinil.

Both help me walk better. I have lesions on my Temporal Lobes. I can only guess they contribute to my spasticity.

Piracetam is cheap. I buy it by the kilo. I'd recommend it to any of us. Levetiracetam is prescribed for spasticity as well.

4-AP --3-MeOP, I've posted about this before. Beats Ampyra, though it's not cheap. Most of my medicine is free, I've spent a fortune on compounded 4-AP and meop, and Modafinil. Money well spent.

It works, for a while. Then it stops.

I've been watching myself over these last few years, the interrelationship between the spasticity, the CNS fatigue and the muscle fatigue.

If I take a lot of Modafinil, I can walk. Or at least I can focus on trying to walk.

If I take a hefty dose of 4-AP, I really can walk, and I don't get so tired because my leg muscles aren't all knotted up.

Baclofen and Gabapentin relax my leg muscles, but they make me tired.

Different mechanisms of action.

Keep meaning to record this in a diary. I've posted before about my crushing fatigue. In a sense, I don't mind the spasticity. Can always hang onto a wall, but the fatigue is a killer.

[monkeybus in reply to monkeybus]

Forgot to mention L-threonine.

ncbi.nlm.nih.gov/pubmed/829...

L-threonine has a modest but definite antispastic effect.

That's good enough for me. 6g per day they recommend.

[SongStream]

Thanks monkeybus for the reply. I enjoy and learn quite a lot from your postings and travails to find some kind of relief and improvement. I cannot fathom taking so much Gabapentin which apparently is the maximum dosage. I agree with you on the "stoner" effect; although mine is mild : )

Fatigue and neuropathic pain are also my chief complaints which I seldom hear about from other AMN males. However, neuropathic pain seems prominent with other female carriers. I also don't mind hanging onto a wall sometimes while medicated which some MS patients refer to "wall surfing".

Time for me to look into L-threonine.

Keep us informed. We're with you.

[mch1976 in reply to SongStream]

Songstream, I'm newly diagnosed and neuropathic pain is my primary symptom. In my upper legs and hips. I actually did a L3-4 nerve burn with a spine doctor just before my diagnosis, but it hasn't helped any yet. I take maximum dosage of Gabapentin & Baclofen but it isn't helping. Where is your neuropathy and how are you treating it?

[SongStream in reply to mch1976]

Mch1976, my neuropathy is only on the soles of the feet and the pain varies from awareness to wanting to dismember them (only at nighttime). I only take 300 mg of Gabapentin but 600 mg will relieve the most dire pain. Yours is the first that I've heard of the pain being in the upper legs and especially the hips which covers a greater area. I cannot imagine the pain you must endure. Seriously, have you considered cannabis?

[Blacksheep]

Has anyone tried marijuana for spasms?

[cdp71]

Monkey,

What are the negative effects of your spasticity? As I have written elsewhere, I am currently battling nighttime spasticity. My legs are very weak, and I have used a wheelchair for ten years. However, I still use my legs for certain things that make my life much easier. For example, I have been able to stand up (while holding on to something) and get items out of cabinets. I can stand up to pull my pants up. Most importantly, I have traditionally been able to throw my wheelchair in the back of my SUV and walk around my car to sit in the driver's seat (as opposed to taking my chair apart and pulling it into my car). However, my nighttime spasticity is making everything more difficult (or impossible). For the last two months, when I wake up in the morning, my legs are bent at the knee and very taught. In this position it is very hard to straighten my legs out again. On my worst days, the result is that I cannot put any weight on the affected leg (which leg is affected varies from day to day), and I am essentially rendered a paraplegic for several hours or days. It is very difficult going to bed at night and having no idea what I will be able to do in the morning with my legs. Has anyone else experienced this? If so, have you found a way to prevent it? I am not very keen on taking drugs.

Good luck to everybody with their struggles, and I apologize for my repeated emails on the same subject.

Chris Phillips

[monkeybus in reply to cdp71]

Don't apologise, CDP, this forum needs plenty more posts.

If I don't booze, if I take care of myself, if I sit down at any given opportunity and if I take plenty of drugs, I can walk. Walk pretty good.

Otherwise, I fall over a lot. Did a lot of damage to myself in the past, falling over. Not when drunk, but hung over. Before I was diagnosed, booze was all I had to free up my muscles, stop the spasms.

It went booze>Baclofen>Gabapentin>Lyrica, throw some Valium in there as well. What a nightmare. No desire to repeat that, but I wouldn't rule it out.

Been on 4-ap for two years. Haven't tripped up once. 4apmeoh is even better. But like I've said before, the spasticity comes and goes in cycles. And the spasms, and the fatigue.

Now I've just switched from Gabapentin to Baclofen and Piracetam, things could be worse. I stopped taking Modafinil for breakfast, I do it at lunchtime now. Bad move, the fatigue is really ramping up. I'll switch back to all day Modafinil from tomorrow.

I'll just point out, I'm up to 10mg of 4apmeoh per day. This is a lot. It certainly works. But I know it'd work better if I detoxed for a week or two.

It's predominantly my right leg that's affected, unlike you my spasticity is better at night. Mid-afternoon is my peak time for both spasticity and fatigue.

Sat here watching TV. Legs would have been spasming like crazy even a month ago but 5000 IU of Vitamin D-3 really is like magic.

My brother is 47. Just been diagnosed. He walks good. Slight limp.

Extremely variable, this disease.

[annlynne]

Hi, only just found this site. Re the spasticity. Yes I get that, it caused big problems with the nail on my big toe which became ingrowing then had constant infections -so antibiotics- then INR affected. Ultimately I had my nail removed (not to be recommended). Has anyone spoken to you about BOTOX. I haven't actually had it myself because the conditions were never right, but I believe it works on hand and foot so ask your stroke consultant or get yourself referred. I really get frustrated at not being my old self and being so restricted in what I can do. But I think the secret is to find something you CAN do and try to be good at that. It is a most cruel illness to hit anyone and you have no idea the extent of the suffering unless it happens to yourself. Regarding the correct medication I believe it is best to find a drug that controls the pain and stick to it.

Try to get some of this lovely sunshine . I hope it cheers you up

best wishes to all

Annlynne