Anyone ever experience tonic spasms?

[gdmcor]

Hi everyone,

I now suspect that what I've been having the last couple of weeks are painful tonic spasms. I have not been able to see a neuro yet or get any MRI's, but both should be in the near future.

I have been taking baclofen, which isn't a lot of help, but it's something for now.

Here's what happens. First, mine are left sided and affect the whole left side: arms, hands, back, knees, legs, feet. I get a certain sensation and know it's going to happen. I go down on my left side and experience painful spasms, with my hand becoming claw-like, a lot of pain in the arm, hip, and low back, down the whole leg. I would describe it as like a labor contraction, intense pain, lasting about 15 seconds. It's quite awful and I am only getting around with a walker in the house, would not go out in public without a wheelchair/scooter, which I don't have. They are rather like seizures.

I've read about them online and see that epilepsy drugs have been used with some success, also a drug called misoprostol (Cytotec).

Has anyone experienced these type of spasms and had success with a certain drug? I'd like to be able to talk to the neuro about it with a little knowledge behind me.

Thanks for any help or hugs I can get! Gretchen

[SalpalSally]

I've had rather mild ones, but nothing as bad as what you describe.
How awful, so sorry. Ihope you and your Doc will find something soon,
to give you relief. I did read about it and perhaps a treatment for Epilepsy
may help?

[gdmcor]

Thanks Sally. :)
I'm trying to stay positive, but it's hard. Going to call my doctor now and see if MRI's are scheduled yet. Should hear from the neuro this week. If it gets any worse, there's always the ER again.

Gretchen

[agate]

Hi Gretchen,
I haven't had spasms like those you describe. They must be very difficult to deal with.

For many years I had episodes of crippling pain in connection with kidney stones but that was a nonstop pain in the flank area. I was able to do nothing at all for as long as it lasted, and that was sometimes hours or even a day, a couple of times a month.

The only thing that helped that pain, which seems to have been a kind of spasm, was carisoprodol (Soma), and it didn't always help. Also, it can make you dizzy. It's an anti-spasmodic--you might want to ask about it.

I've heard many people with MS take baclofen for spasms but haven't tried it myself.

I hope you find some remedy for this.

[gdmcor]

Thank you agate. I do have cervical, lumbar and brain MRI's set up for this Thursday, so I'm getting somewhere.
My husband had kidney stones and said the pain was unbearable, so I know that couldn't have been easy.

I am taking baclofen, but it really doesn't do the job, but perhaps helps a little.
I have records faxed to an MS neuro, who hopefully I'll get to see before too long.

I'll keep you all informed of any diagnosis or progress. Thanks, Gretchen

[sakonnet]

My left side is also the pretty active as far as the MS stuff goes. I've taken zanaflex and baclofen to try and help spasms along in my hands, torso, legs, and feet. It was a waste of time. I had one neuro tell me to take the stuff every day to prevent it from happening. Seemed like a needless risk and expense to me since it didn't happen every day. Those scripts have long since expired

There are times when I can feel it coming on. I wonder if that's why there's some crossover in treatment with the epilepsy drugs. Many epileptics can tell when a seizure is coming, too. That is probably a good time for those orally disintegrating klonopin tablets

With that in mind, I asked for a note from my doc to use marijuana since it's now legal where I live. He gladly signed the form and made it clear that it's not a prescription, just permission to legally possess it. The feds (that's you, NIDA) have blocked research, so it's up to patients to figure out how to use it in the most effective way for them.
Inhaled drugs get into the blood much more quickly than tablets. Pills are useless if they don't kick in until 20min after the spasm has passed. My plan is to use a vaporizer (no smoke) once the drug is available. It's worth opening up the discussion with your doctor even if it's not an option right now.
BTW he's a real doctor, not one hired by dispensaries as it's done in other states.
Sativex will probably be available in the US soon, too. I don't know from experience how effective it is, but it comes with the added benefit of directions and something insurance is likely to pay for
Good luck

[gdmcor]

Hi sakonnet,

I think you're right about the baclofen I'm taking. I am currently using 10mg/twice a day, but it doesn't stop the tonic spams on the left side. I believe that the klonopin is better at relaxing the muscles, but I only have a few left prescribed by a neuro I have already fired. At the time, it was for anxiety.

I finally have an app. with a new MS neuro, but not until Aug. 14th. Hopefully I can get a new script of klonopin, plus try the carbamazepine (epileptic drug) for the spasms. It's a heavy duty drug, only used for a short period of time, then withdrawn. It's supposed to be exceptional for these type of spasms, the drug of choice. I hope I'm only having a relapse and these will go away!

I had a set of brain, cervical and lumbar MRI's yesterday, with and without contrast. Two and a half hours in that tube, lying still, was brutal; but they got good images, which was the objective.

I like the idea of bringing up the sativex to the neuro, the fewer side effects, the better. I will take note of that now. Thank you!
Gretchen

[stillstANNding]

Gretchen,

Ten mg of Baclofen twice a day is a low, beginning dose. You may need to have that increased.
ANN

[gdmcor]

Ann, Do you get these type of painful spasms - tonic? For me, they last about 20 seconds, are left sided, and start with a tingling type feeling in my knee or leg, usually after getting up from a sitting position. This is the first time in 27/29 years of MS that I've had them. It's been going on for a few weeks now. The intensity of the pain brings me to the ground on my left side. It happened 3 times in public, very embarrassing/humiliating to say the least. Still need a wheelchair/scooter for going anywhere now. I'm hobbling around with a walker indoors.

The baclofen makes me weaker, so the thought of increasing it is not something I'd like to do. I guess I will stay on the 10mg/twice a day until I see the nurse practitioner on the 14th of Aug. I've not had the spasm in a couple of days, though it's certainly felt like one could come on.

Thanks, and aren't you the kind lady with the chocolate? Gretchen

[stillstANNding]

Well first of all, Gretchen, let us eat the chocolate. Today's is dark w almonds or the other, your favorite.

I have 3 kinds of involuntary movements that do not hurt and give me no sign that they are about to happen. They are suppressed w 2 mg of Klonipin a day.

I also have tight legs at night and wicked spasm in my left neck and shoulder. These are helped w baclofen. I am told that baclofen should not help the neck and shoulder but it does.

This afternoon- before we go off to the beach :) - I read several definitions of tonic spasms and I don't think that anything I have is anywhere near what can happen w those in the pain regard. I have some dramatic movements but not dramatic pain, TG.

Have seconds on the chocolate, never know, it might be the cure!
ANN

[gdmcor]

The beach AND dark chocolate - now you're talking! Both of these together should surely be a cure, for anything, I might add.

Yes, the tonic spasms are quite painful, but fortunately don't last long and I don't get them frequently. Still, I have to be careful about left knee bending and other movements that bring them on. I've had other bad relapses, including urinary retention. Not sure if this is worse than that or not.

They are associated with MS though, with epileptic drugs being used with success. Hopefully, this too shall pass.

Thanks again for the dark almonds, they are one of my favorite!
Gretchen

[eternalj3]

I have the same type of spasms on my left side

The beach AND dark chocolate - now you're talking! Both of these together should surely be a cure, for anything, I might add.

Yes, the tonic spasms are quite painful, but fortunately don't last long and I don't get them frequently. Still, I have to be careful about left knee bending and other movements that bring them on. I've had other bad relapses, including urinary retention. Not sure if this is worse than that or not.

They are associated with MS though, with epileptic drugs being used with success. Hopefully, this too shall pass.

Thanks again for the dark almonds, they are one of my favorite!
Gretchen

Hello Gretchen. I was wondering if you were able to find a solution to your Tonic Spasms. I just started having the same symptoms on my left side. They are very painful and since January 1 2014, I have had 9 of them. Please let me know if you have been successful with your treatment. I have had 2 MRIs, with no diagnosis. I'm scheduled for a lumbar puncture this Monday. Thank you for your time

Sarah

[Lazarus]

Sorry you are having such pains. I have had pains associated with my MS for the first time ever. Not like you but the cramping caught my attention. I can suddenly get unbearable cramps in my fingers or my feet or legs. So far I have been able to push the ramps out with my hands or by changing positions...but, I have doubled the amount of baclocen I take. I also pay attention to being hydrated as the cramping is worse when I have not drunk enough water.

Something you said caught my attention. The part about sensing what will happen right before it happens. It's just that I know this. I usually say "my arms are sick" and within a minute the pains begin. Not sure what this means but I never saw anyone talk of it before.

Best of luck finding relief.

[gdmcor]

Reply!

I just now saw this thread updated and will reply.

Sarah, The spasms gradually ended, like a lot of MS stuff does. I had them almost everyday for about 5 weeks. After that, my left side was left weaker than before and I have nerve pain off and on. Seems it was related to the MS, as they ruled out a stoke. I take Neurontin for nerve pain and also still take Baclofen. I'm now on Klonopin full time for the anxiety that all this causes, it can also help your muscles relax.

I did PT for about a month, which helped with hip balance and strength, and still do them at home, when I think of it. So, staying mobile is now key for me. I do some slower treadmill walking a couple times a week also. The spasms definitely set me back though. At least I'm walking unaided now, not bad for almost 30 years of MS. I was using a walker, cane and wheelchair during the time of the spasms.

Have you found an answer to your symptoms yet? I wish you all the best.

Lazarus, I hope you are finding some relief from your symptoms, I guess that's the best we can do for now. Take care everyone!
Gretchen