Myoclonus Treatment Help, Please
 

I am not sure of where to post this and hope MrsD, or another moderator will help with this.

Since the PN group is my "home base," I will start this here.
I have had myoclonus along with PN; this does not prove they are connected, however. My medical picture is far from clearly presenting one picture or two... or even three. (PN has been one of the most consistent of all.)

I am limited in my ability to recount info. at the moment.
I have been experiencing myoclonus again, for about 10 days or so.
This is not the first time I have had myoclonus, along with sound sensitivities, etc. (I have also had intermitttent severe RLS over the years; yet, have not seen this in a long time now... once I had realized my exposure to my computer was triggering the RLS. RLS came back when I had purchased a laptop and was using it for the first day! )

This myoclonus has been very active. It is whole body and is close to constant.
The magnesium (ionic fizz) had seemed to quiet this quite a bit for a few days. Suddenly, the myoclonus was worse and relentless. THis has been active during the day, not only when falling asleep. Many times, things in a hand, or things with a hand simply resting upon them, cause the object to suddenly fly violently across the room.:eek: Also have shoulder shrug(s), muscles jumping wildly, along with lesser muscle movements (fasciculations), head/neck jerks, limb jerks, etc. These movements go down through legs/feet, too.
Also have repetitive muscle movements on the trunk of my body.

The last time I had this, my neurologist had tied it in with use of an SSRI.
We had shown that relationship again by re-exposing me to the same SSRI after the myoclonus had quieted.

Right now, we do not know the exact cause. My neuro. will be scheduling testing. He states I have a few things going on that could contribute to myoclonus/myoclonic seizures (and/or other seizure activity). (I am aware of the various potential causes for myoclonus.)

I am very sensitive to meds of all types. In the past few days, I was given the choice of clonazepam or Keppra, until we know more about the etiology of the myoclonus and also know how I respond to treatment.

I do not do well at tolerating Keppra at all. Just cannot do it.
I tolerate clonazepam much better. Yet, asleep and dazed.
He'd wanted me to work my way up to at least 4 mg. per day, to see if this amount would give me control. (He had said often 4mg-10mg is used for myoclonus, thus he was not overly concerned about the 4 mg. dose. He did some labs, too, for now.) I am to try to use the clonazepam to control the myoclonus over the weekend...and until we can sort out he reasons for the myoclonus this time around. (No new meds on board.)

Wow! I am having great difficulty writing this, please forgive me for any errors.
My max for the clonazepam is btw. 3-4 mg right now....and I then sleep almost all day. I awaken in a daze. It gives me cognitive problems. I try to take at least 1/2 or the total daily dose at bedtime.

My question: Are there other supplements that may be less sedating, yet may help with myoclonus? Has anyone heard of using some of the supplements used in this/other conditions for controlling these movements... for calming the nervous system?

MrsD, I had tried to research myoclonus and in the search function, had found it in many different forums. I am not sure of where to place this post.
I am also a bit dazed form the extra med. Please move this post if it needs to be elsewhere? Many thanks to you! :)
Love your new flowers!:D

I hope everyone is having a good day!:)

Many Thanks! :)
~DejaVu

Severe myoclonus and dystonias remain very hard to treat.

There is something wrong with inhibitory neurons, and it is just not well understood.

I am a little confused about using an SSRI....

http://findarticles.com/p/articles/m.../ai_n29374982/

But I wonder if ice packs along the area where you have the worst movements, along the spine, might reduce them some?
Ice typically slows nerve impulses. It is worth a try.
Just don't overdo it. 20 minutes tops on one area, with a thin cloth protecting the skin.

I don't know of supplements other than magnesium for this serious problem.

Also, I'd like to add.

Serotonin levels can be elevated naturally in the body. This comes from tumors secreting biogenic amines, including Serotonin. This has to be tested for IMO.

Sometimes it comes from a hidden slow growing carcinoid in the GI tract. Sometimes it can come from a lung tumor.

Doctors don't look for this as a primary thing often, especially in a complex case that seems to point elsewhere.

But doing testing on serotonin levels...24 hr urines etc may point to the culprit in your case.

Thank You, MrsD!
 

Hi MrsD!:)

Thank you for your quick response!
Thanks, too, for the article you have cited! Interesting!
Strangely enough, myoclonus is triggered with SSRIs (for me), even with one SSRI source only and there's never any suspicion of a serotonin syndrome. (Although that does not mean a serotonin syndrome is not going on. I wonder what some of the other causative factors may have been-- possibly an organ function that was "borderline"okay at the same time, ie: kidney or liver, etc. Hard to know. I think these matters can be complicated/multifactorial, for sure.)

I had myoclonus one time when the only abnormal lab function was a borderline low ferritin level.

I am going to try your suggestion! :D
I am staying cool as we have the A/C going at home. Yet, this is a benign approach and well worth a try.

Interestingly enough, the athletic trainer/PT/chiropractor I have worked with, intermittently over the years, for strength training and cardiovascular conditioning, always ices my spine immediately after I am finished any training activities. At these times, ice has helped me to not go into states of more severe flares and keeps me better able to attend the next conditioning session.

I had thought I had really good control with the ionic magnesium for a few days! I was thrilled with the control! The only thing that had suddenly changed was: I was unexpectedly out in the very hot heat (due to a car accident-- no injury) and within a couple of hours, the back of my neck/head area had felt swollen and very stiff. I get this type of swelling if exposed to the heat for very long and then, typically, things go awry for a fairly long time. I have learned to avoid heat exposure at all costs.

I am still using the ionic magnesium and am sure it is helping the situation!
I alternate it with the Slow-Mag formula.

The ionic magnesium is amazing stuff. My husband was injured while mountain biking this past weekend. He had terrible spasms in the piraformis region (caused by an injury to this region) and these spasms were impinging upon a nerve, causing sciatica. He was in agony. Once I had found the muscle spasms were underlying the nerve pain, I had him drink the ionic magnesium. Within 2 "doses," he was fine... the spasms had let up and had totally released the nerve. (This piraformis scenario can otherwise go on for another 7-10 days, with trips to PT, etc.) :D

Hmmm.... yes, this myoclonus and dystonia stuff is complex.
There again, my spastic hand is much improved with the ionic magnesium.:)

So...even the amino acids just don't target myoclonus well?
I imagine this process is very different from the process with Tourette's and any variety of tics, etc.
I am very grateful for your replies, MrsD. You are so kind to all! :hug:

With Sincere Gratitude!
~DejaVu

Oh! Great info and makes sense!
Thanks for the thought put into the possibility of a biogenic amine secreting tumor! It makes sense to check this out! :)
I will be mentioning this, for sure!
Thanks again!:wink:
~DejaVu

Cooling the Spine...
 

Seems to help some with myoclonus!
I am going to keep trying this!
Thanks for this suggestion, MrsD!:D

I also have a medium shawl made with dry rice in it.
It can go in the freezer or in the microwave,
I have always used this in the microwave... until recently!
The rice gets very, very cold when placed in the freezer!
It is convenient, as nothing melts... it all just warms up in time out of the freezer!

Going to try this a few different ways and will report back!:D

I was sticking with the clonazepam 4 mg/24 hours.
This, too, was really helping myoclonus; yet, I had found I was quickly losing cognitive abilities, have been extra sleepy, etc. I had cut that daily dose in half today and was still sound alseep for 4 hours mid-day! It seems it was having a bit of a cumulative effect. I hope to use less med and more ice/cooling.:D

~DejaVu

Topamax/Clonazepam
 

I realize that your last post is a few years old, but I thought I'd throw this out there . . .

If you're still suffering from myoclonus, have you tried Topamax and Clonazepam (only at bedtime) together? I used these to treat mine and they did a good job. Doc took me off a few weeks ago to see if underlying myoclonus was still same as baseline - it got worse and more frequent without these meds. Don't know where I'm going from here. :(

Good luck to you!

Carrie

Vascular TOS and Myoclonic jerks--Me Too! Had bilateral rib resections DVT's etc 2008
 

Hi Carrie,

Sorry to hear you are suffering so much with TOS and myoclonus and peripheral nerve problems. I know how hard the struggle is with TOS even to just get a diagnosis and I hope you have gotten somewhere with your diagnosis of your myoclonus and nerve damage since your last post. My name is Christina and I also have vascular TOS bilateral (had DVT's bilaterally and had first rib resections in 2008...had complications with repeated clotting etc and left arm subclavian is still completely occluded with clot..had stents placed both sides but left stent failed due to new clotting etc so went home with collateral veins taking over and am ok but still have some pain and left arm is permanently damaged slightly swollen but I am thankful to my great surgeon that I still have both arms to lose since my other dr's refused to believe I had vascular TOS and waited too long refused to do surgery thus the permanent damage to veins..I am sure you know the story!)...I also developed myoclonus which sounds exactly like yours...first minor jerks..later symmetrical worsening severity etc...tried several medications...also have peripheral neuropathy (small fiber neuropathy & large fiber neuropathy) causing nerve damage & severe pain in my legs feet arms hands etc...also have hypothyroid with a thyroid nodule and have had several biopsies of the nodule but no surgery..yet...and believe it or not I am from Temecula but currently live in Utah..but we are moving back to Temecula/Murrieta as we are tired of the snow and my body can't handle cold weather anymore...already moved one truck load there to Murrieta...we have our own business here and must decide what to do about my health insurance coverage first so it is a slow process. We are still trying to find the cause of my myoclonus, chorea, tremors, muscle spasms, migraines, fatigue, etc. and I have had tons of labs and MRI's..sounds like we really have a lot in common!.. I WOULD REALLY LOVED TO CHAT WITH YOU...sent you my email in a PM...I don't check this forumn very often so I will more likely get the message if you call or email....look forward to hearing from you Take care, Christina Hurt