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My name is Carrie. I have been a member of NeuroTalk for a little while and posted almost exclusively on the Thoracic Outlet Syndrome forum. Thankfully, my TOS (vascular) is resolved (for the most part) folloiwng surgery. I thought I was done with medical issues for now, but new symptoms have unfortunately surfaced and I am far from a diagnosis of any type. I'd really love to hear from anybody who might have any experience with or ideas about my new symptoms.

A little history: I started taking Baclofen (40+ mg/day) for the nerve pain associated with my TOS 9-12 months ago. It worked really well for that and I had no notable side effects. About 6 months ago, I began having myoclonic jerks in various and asymmetrical body parts with no apparent pattern except that they would usually happen while I was at rest, sitting watching TV, on the computer, at a stoplight in the car, lying awake in bed, etc. I was having about a dozen a day, but they usually weren't intense enough for anybody to notice (except for me, of course). I was having such a hard time getting diagnosis and treatment for my TOS (check out my posts in TOS section) that I didn't mention the myoclonic jerks to anybody for fear that it may delay TOS treatment and/or just complicate issues. They seemed minor and I decided to wait until after the TOS surgery to talk to the doctor about them.

During and immediately after my surgery, while still in the hospital, I was not given Baclofen as it was for nerve pain and I was on all the heavy-duty Dilotid, Demerol, etc. via IV/IM. About 3 days post-op, I began having strong and frequent myoclonic jerks, sometimes several within a few minutes. My husband said I was having them all the time while I was sleeping too. Although I didn't need it for pain, I suspected the myoclonus may be related to the lack of Baclofen and so I mentioned it to the nurses that I was supposed to be taking it. They confirmed it on my chart and started giving it to me. When I was discharged 2 days later, the myoclonus was much better, albeit still present.

About 3 weeks post-op, I decided to stop the Baclofen again on my own to see what would happen. The myoclonic jerks came back with a vengeance along with tremors and blurred vision. I started back up on the medication and went to see the doctor. We discussed how Baclofen can both cause and treat myoclonic seizures and how withdrawal from Baclofen can cause severe myoclonus. Sooooo . . .

He put me on medication tapering schedule to slowly get off the Baclofen to see if the myoclonus would go away. Three weeks into the schedule, the frequency and intensity increased again. I stayed on the same Baclofen reducing schedule, but we added low-dose Valium to control the myoclonus. It's been over 6 weeks now. My last Baclofen was 5 days ago. I am still on low-dose Valium and will stay on it for a month before tapering off that too. Right now, the "jerks" are definitely still there and just as frequent, but barely noticeable (even to me sometimes). But, in the last few weeks or so, they've also started happening in response to certain actions/movements, rather than just when completely at rest.

A full blood workup showed all electrolytes, Ca, Mg, K, etc. are good. The only abnormality is low Free T4 (with a normal TSH level). This wasn't terribly surprising as I was diagnosed with a small 10 mm cold nodule on my thyroid about a year ago too (with normal thyroid hormone levels at that time). Did a new thyroid ultrasound yesterday to see if nodule has changed any in the last year and started on Levothyroxine.

I have read that thyroid hormone levels can be related to myoclonus. I also read that a low Free T4 with a normal TSH can be related to the pituitary gland which isn't part of the brain, but sits directly underneath it. So - - - finally, my question is:

Could the myoclonic seizures be somehow related to the thyroid and/or pituitary glands? Or does anybody have any other ideas? I have 2 doctors stumped so far, but my appointment with the neurosurgeon isn't for a few more weeks.

Thanks

I am sorry you are suffering with myoclonus.
This can be mildly to extremely bothersome/debilitating, as you know!

In fact, mine was severe at its worst. My hand would suddenly grab onto a remote control unit and toss it across the room, for instance!

I have dealt with this a lot this calendar year... in varying levels of severity.
As I understand this, myoclonus (myoclonic movement) is not always a myoclonic seizure. In fact, my neurologist had stated he can rarely find myoclonic seizure with myoclonic movement; however, sometimes it is seizure activity. A second and a third neurologist each had told me they find myoclonus most often "idiopathic" and "transient." (However, such is not always the case.)

Many drugs have a side-effect of myoclonus. Too many!
Narcotic pain meds are just one of the causes of myoclonus.
This may have contributed to the increase in your myoclonus immediately after surgery, in addition to any withdrawal you may have been experiencing from stopping the baclofen at that time?

SSRI antidepressants are also often mentioned for causing myoclonus.
There's so much potential for myoclonus from pharmaceuticals, it's hard to sort it all out! The only way to sort out medication-related myoclonus is to withdraw (under doc's advice) from each med to see if the myoclonus decreases/stops.

I have read many, many personal accounts of individuals experiencing myoclonus while taking SSRI, SNRI medications. Some of these same people have reported the myoclonus had worsened terribly when withdrawing (even slowly) from these meds. Many had also reported the myoclonus had continued for a couple of months after they had totally discontinued meds in these drug classes. (So... I really do not know. So very many people have reported this.)

Some disease states also include myoclonus as a symptom.

There are other causes, as well. I am sure you have read of the possible causes. A couple of causes (and/or "exacerbating factors") are lack of (quality) sleep and stress/anxiety. If these factors do not "cause" myoclonus, they certainly tend to exacerbate it!

It's likely many cases of myoclonus are multi-factorial in cause?

The "onset" of myoclonus, for me, had seemed to coincide with having had surgery last year. I had gotten the best control with clonazepam, actually. I had tried Keppra and had some immediate relief; yet, I could not tolerate the Keppra for more than 3 days, due to terrible side-effects (in my case).

I am awaiting additional labs right now. Yet, I have found my experience with myoclonus has drastically reduced now that I have withdrawn from any/all meds causing myoclonus (side-effect). I have also improved my sleep, which has helped tremendously. I am not sure we have found the true "cause" of myoclonus; however, it is controlled right now... with improved sleep and decreased stress. (Time will tell!)

I also have a very sensitive nervous system. It easily reacts (seemingly over-reacts) to many things. I am also extremely sensitive to most meds/chemicals, to lack of sleep, to blood sugar levels, to circadian factors, etc.

I had a friend experiencing myoclonus all through his years in medical school, etc. When he was able to have a less erratic schedule, with better quality sleep and less overall stress, he'd lost the myoclonus for the following 20 years! (Who knows, it may be gone for good in his case... or may show up again?)

I hope you can find the cause of your myoclonus and any exacerbating/contributing factors. I hope the "fix" will be very simple for you!

I'm very interested in how this all works out for you!
My very best to you!

Thank you so much for the great information you gave me on your reply to my post.

Since my last post, I've seen a neurologist, quit two medications that may have contributed (in addition to being completely off the Baclofen for several weeks now), and had an EEG last week as the myoclonus continues.

I've been taking Clonazepam with good control, but I can tell they're still there. However, they are so minor, they almost seem "internal" or like muscle spasms that only I'm aware of. My main problem with them is that I'm a transcriptionist by profession and often my finger will need to type an "e" but suddenly jump over to type a "b" (nowhere near "e"). Other than that, they don't cause many problems for me.

My EEG interpretation states: Abnormal EEG in awake and drowsy states. Normal EEG in sleep stage. There is electrographic evidence of polyspikes w/o epileptiform evolution in frontal lobes bilaterally. Clinical correlation recommended for evaluation of nonepileptic myoclonus.

Doctor has suggested to continue the Clonazepam for 4-6 months and feels the myoclonus may go away altogether. Will re-evaluate at that point. I am very hopeful !!!

In the meanwhile - thanks again. You are all in my thoughts as I've spent many hours on this site learning and communicating with my friends here.

Have a great day!

Carrie

Well, it's been another 9 months, with not much to report. The myoclonus continues and has even started to happen bilaterally/simultaneously. I also have some signs of nerve demyelination of my arms and legs, according to my neurologist, so starting the labs and testing for MS (apparently I have other symptoms of the disease too - I know there are MANY!). Oh boy, not what I want to hear - although it sure would explain a lot! Did blood work and scheduled for LP and brain/spinal MRI's.

Currently taking Topamax 50 mg BID and Clonazepam 1 mg/day with continued myoclonus (as well as other meds). Also having burning/tingling sensations in both arms, bilateral TOS symptoms, bilateral numbness to feet, ankles, and up to knees, bladder issues, fatigue, anxiety, and depression. I pray that all of this is just side effects from the medications I take . . . I guess time will tell with new workup.

Does anyone know if myloclonic seizures hurt..?just asking cause my son just turned1 years old and got diaagnoised with these seizures..!

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 our parents are getting older and live there and 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..I sent you my email & phone 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..I recognize the rolling hills of Temecula in your photo Take care, Christina Hurt