Discussions By Condition: Nerve conditions

Myoclonus Help!!!

Posted In: Nerve conditions 13 Replies
  • Posted By: erzulie
  • January 10, 2007
  • 07:50 PM

I am desperate for help because all of my doctors have told me they can't help me!
I don't know if I should do nothing and hope this will all go away in time, or if it is necessary for me to take medications, or if there are other avenues of treatment I can try.
If you know of any resources I can go to in California (preferably San Jose area) or even outside of CA...I'll fly anywhere. I would really appreciate it.

Was misdiagnosed with Bipolar Disorder and in one month's time was on Klonopin, Lithium, Zyprexa, Seroquel, Lamictal, Lexapro, Wellbutrin, and Ambien. Am also on Loestrin & was told that it was perfectly safe to skip the placebo week forever.
Experienced a ton of side effects, some of which took me to the hospital. After 2 psychiatrists, 2 general doctors, and a neurologist, I've been off of all medications (except Loestrin, but have been taking the placebo week for 5 months now...still no menstruation) for 3 months now and still have myoclonic episodes that last an hour with approx 4,000 tics that leave me gasping for air. My recent MRI, EEG, and blood tests all reveal normal levels and no seizure activity. The episodes seem to be triggered in a resting state after a prolonged period of stress and external stimuli. The doctor doesn't know what else to do and told me this is the end of the road. I refuse to believe that I can never be Normal again because I was perfectly fine before all of the medications. He wants to put me on Klonopin or Depakote but I'm afraid to take more medications. My family is telling me to do nothing because they think it will go away in time. I need to know what my options are. Please help!

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13 Replies:

  • Just wondering what is myoclunus? If you were perfectly normal before the medications then why are you taking them and what made them come to a diagnosis. Were you having symptoms and went for help. :confused:
    nccarol28732 44 Replies
    • January 15, 2007
    • 01:16 PM
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  • Thanks for your reply. The type of myoclonus I have is where my body will go through body tics (contraction & release of muscles) ranging from 10-4,000 per day. When I said I was "normal" before, that meant that I didn't have any symptoms of myoclonus at all, was able to exercise, perform in theater, I was what anyone would call "normal". I went into the doctor because I felt I was having major insecurity issues (had rare suicidal thoughts...which was scary for me) with the onset of a new relationship that I wanted desperately to work. I thought seeing someone would strengthen myself security and transform me into a stronger, healthier, happier person. The doctor was very convincing that she knew what she was talking about. I have always been pretty healthy and hadn't been to doctors much. I questioned all of the drugs I was taking and she assured me that I was on "baby doses" and that a lot of patients have to be on more than one drug at a time in order to balance their mental state. I talked to other friends and they all said that it is common to go through an experimental stage to find the right combination. I did feel that the drugs helped tremendously with my self esteem, but the physical effects weren't worth it. I now possibly may be stuck with this uncontrollable ticking forever and have completely lost the lifestyle I had before. So I'm looking at the positive side of life, but am still trying to find a way to stop the tics.
    erzulie 3 Replies
    • January 15, 2007
    • 06:30 PM
    • 0
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  • This may sound trite, but try to detox. It may help. There are lots of different ways to do it.
    Anonymous 42,789 Replies
    • January 16, 2007
    • 00:44 AM
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  • Alot of all those meds can cause alot of side effects and all those in one months time I would think could really throw your system off. I can't see how they could have tried them all within that short of time. Some meds when combined can have adverse effects. I know seroquel is heavy duty and has twitching as a side effect. Do you still use the same doctor if so I would really consult someone else. Maybe even a neurologist about the tics. About the Loestrin its that new birth control pill right? Why did they put you on that also was it just for birth control? I dn't understand why you are taking the placebo week for so long? Having rare suicidal thoughts with all that is going on is not a concern but to be put on so much medication seems abnormal to me. It is not uncommon to have some stress issues and some people occasionally have thoughts of ending it and finding out really why you are feeling this way would be a good idea so it does not escalate. Maybe speaking with a therepist might help. Guess my concern is what doctor was it a family doctor or did you go straight to a physciatrist? All that could have set off a hormonal problem or chemical imbalance of some sort. Detoxing all everthing would be a good start but sounds like you are off everything except the Loestrin. See another doctor and lay off the physch meds for now until you know exactly whats going. What lead this doctor to diagnose you as bi polar? Let us know. Good luck
    nccarol28732 44 Replies
    • January 16, 2007
    • 00:16 PM
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  • Hi,Please visit the dystonia foundation bulletin board. http://www.dystonia-bb.org/forums/asd/index.html We have several members with myoclonus, and members from all over the country who may be able to direct you to a movement disorder specialist in California.There's a myoclonus forum on the braintalk communties website, also. http://brain.hastypastry.net/forums/forumdisplay.php?f=200Find more information about myoclonus at www.wemove.orgIn fact, here's a link to their myoclonus page: http://www.wemove.org/myo/Also, please check out the condition "tardive dyskinesia." This refers to movement disorders that were brought on by the use of drugs. http://www.wemove.org/td/
    Anonymous 42,789 Replies
    • January 16, 2007
    • 04:18 PM
    • 0
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  • I started uncontrolled muscular jerking in April 2004. I was diagnosed with dystonia, myoclonus, dyskinesia, and intention tremor. My dad had essential tremor for five years before he developed Parkinsons, and my brother has essential tremor. My other brother has an undiagnosed tremor.I was sitting at my desk at work when I had my first uncontrolled movement. All of a sudden, the muscles in my neck did a little dance, and my head did a little shiver as a result. Thus, I called them head shivers. Over the next few months, the head shivers got more severe and developed into upper body contractions of neck and both arms.The doctors wanted to botox the muscles and put me on drugs, which I felt was a bandaid approach to the problem. I refused treatment in hopes of finding a better solution. Then, in October of 2005, I found an abnormal blood sugar result on my most recent lab test, which the doctor failed to inform me. I did research on the Internet and found out that magnesium has proven useful for insulin problems. I began taking magnesium, and my jerking reduced by 50%. This success continued for the next couple of months. Then I decided to ask My God what would make the other half of the jerking go away. Immediately my mind was flooded with a memory of sunbathing up in Maine on the hottest summer day, and I began thinking about how great I felt that day laying out in the sun. Figuring the answer was sunshine, I looked up sunshine on the Internet and found out that sunshine makes Vitamin D in the body.I took my first dose of Vitamin D on January 10, 2006 and went to bed. When I woke up the next morning, I felt a little odd but couldn't put my finger on what was different. I got ready for work and was in the car before I realized: my arm had not jerked all morning! It was just sitting there. Calm. Limp as a noodle. There was a deep relaxation in my muscles that I had not felt before. I went to work and lived the entire day without jerking. I got on the elyptical machine and exercised for an hour without jerking (exercise always creates jerking). I was stunned. I couldn't believe after two years of continous jerking that I was free of it. I kept waiting for it to be a fluke.About 5 weeks later, when it was obviously not a fluke, I put my story online. I was contacted 3 weeks later by a women in Denmark who also had myoclonus and found that magnesium stopped her jerking as well. She carried a dose of magnesium with her everywhere in case the jerking started up while she was in public (same as I do). When she saw my story, she went to her doctor to get a copy of her latest test results and found low Vitamin D on it. She was born with rickets, and her doctor was supposed to be monitoring her Vitamin D levels. She started taking Vitamin D and was free of her uncontrolled jerking within 3 weeks. She had to take double the dose I was taking to get well. So January 10th is a happy day for me to celebrate! January 10th is when I took my first dose of Vitamin D, and January 11th is the anniversary of my first day with no jerking!I still have momentary episodes of uncontrolled jerking. But, I find that if I maintain a dosage of 800mg of magnesium daily and 800i.u. of Vitamin D daily, the jerking subsides. The magnesium seems to stop the jerking, and the Vitamin D seems to promote a deep relaxation in my muscles.If anyone wants more information about magnesium and Vitamin D, I found the website mgwater.com and vitamindcouncil.com very useful. There is a pdf file on the vitamindcouncil.com titled THE CLINICAL IMPORTANCE OF VITAMIN D (CHOLECALCIFEROL): A PARADIGM SHIFT WITH IMPLICATIONS FOR ALL HEALTHCARE PROVIDERS that I found very interesting.Of course, every body is different. What works for me may not work for you. Ask a trustworthy health care professional before making any changes to your diet!I hope you find relief from your symptoms!
    Anonymous 42,789 Replies
    • January 17, 2007
    • 07:39 PM
    • 0
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  • I forgot to include this about magnesium. If you decide to take magnesium, take it in divided doses. Too much at once may cause loose stools. I take mine in 200mg doses.
    Anonymous 42,789 Replies
    • January 17, 2007
    • 11:49 PM
    • 0
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  • AS A PERSON WHO HAS EXPERIENCED PROGRESSIVE MYOCLONUS IN ABSENCE OF EPILEPSY I KNOW THE PLACE CALLED THE END OF THE LINE WITH DOCTORSworsened the disorder yet at the time the docmangod insisted on compliance somehow not getting the message of increased and more violent occurrence. A couple of years on the next docmangod somehow convinces me to try the new version i do and am thrown immediately back into the place called adverse reaction. i have been called a resistant patient for refusal in drug therapy when in reality i am the one suggested the med that will help for awhile. very confusing very rare very painful chronic yarg do not give up.detox, vitamins, meditation the universe provides an abundance of options to cope....envision restored health make it your expected outcome ......good luck
    Anonymous 42,789 Replies
    • February 9, 2007
    • 04:20 PM
    • 0
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  • This forum is wonderful. I have Myoclonus which is getting worse and very scary. I am going to be starting Valproic Acid treatment (Depakote) which supposedly helps. I am so glad that I read the post about Magnesium. I am going to buy Magnesium supplements as soon as possible. I pray that they work. The Myoclonus is destroying the quality of my life and I am starting to become a shut-in because I am afraid to go out and have people stare at me as I twitch and ***k. Please pray for me and I will pray for everyone with Myoclonus. I believe that I developed it as a result of one year on daily Lexipro. That's when the symptoms started and even though I have stopped taking it for a year, I still continue to get the symptoms and they are worsening.
    DarkAngel 3 Replies Flag this Response
  • Erzulie,Oh my, you are very toxic from your medications and some of the ones you were prescribed are completely contraindicated with the Loestrim you are taking! You are lucky to be alive in my opinion:confused: . First thing to check on is the Loestrim, since you are still having the myoclonus episodes and it is the only med you have been consistantly taking. Side effects follow: Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); breast lumps; calf or leg pain or swelling; chest pain; coughing of blood; dark urine or light-colored bowel movements; depression; dizziness or fainting; fever; heaviness in the chest; lack of energy or fatigue; loss of appetite; mood change; numbness in arm or leg; partial or complete loss of vision or other vision changes; sleeping problems; slurred speech; stomach pain or tenderness; sudden severe headache; sudden shortness of breath; swelling of the fingers or ankles; weakness on one side of the body; yellowing of the skin or eyes.Also, this drug can cause STROKE, BLOOD CLOTS, VISUAL PROBLEMS, and will interfere with many tests incuding blood tests, blood sugar, and PAP tests. ALL hormonal birth control pills have side effects - some can be extremely severe to certain women. I don't recommend any of these at all, and I can't imagine why a doctor hasn't told you this could be a cause of your problems. I am most concerned for you as depression is a MAJOR side effect of Loestrin, but if you take antidepressants they will interact with this drug! Please, PEOPLE, we all need to be INFORMED about the drugs we are prescribed. They are not harmless, and many have horrible horrible side effects. www.drugs.com is a great resource. Best wishesDOM
    acuann 3,080 Replies Flag this Response
  • I had posted about my Myoclonus and I believe that I am toxic from taking so many types of meds at once last year in addition to long-term Lexipro damage. Sometimes Myoclonus can be a form of withdrawal. Mine is going on for a long time and I am only taking a few mild heart meds but I have just started Valproic Acid (Depakote) which is now being prescribed for Myoclonus. I am on my third day now and believe it or not, the Myoclonus is being relieved a bit. I am hoping that as the Depakote builds up in my bloodstream that it will stop it completely. But it DOES help. I am not saying that this is the remedy for everyone but it might be food for thought.
    DarkAngel 3 Replies Flag this Response
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  • I'm glad you posted about the importance of vitamins! My neurologist thinks my vitamins could be the cause of the twitching, not anything else! I need a new neurologist! I haven't had an EMG yet. I started having eye twitching after my slight concussion in 2008. After a catscan with the contrast die and iodine I had a lot of muscle and body twitching, even with my jaw. I had severe insomnia at first and it has gotten better. I've also been on Seroquel for over 10 years. I know it can be a side effect. I never had the twitching until after my concussion. I also do the elliptical 1 hour 2-6 days a week to detox my body, for stress and to help loose all the weight I gained on Seroquel, and I do weights for my sciatica. I’ve heard it can also make twitching worse. I also take valarian root, homeopathic chamomile 30 c, lemon balm, ALA, 1,500 MG calcium, 1,000 MG magnesium, glucosamine, zinc, vitamin D, knox gelatin, liquid multi, cramp bark (for inflammation. Instead of taking ibuprophin & Tylenol.), fish oil, papaya enzyme, acidophilus critical care, ginger, reishi mushroom. I go to cranial sacral therapy. I also go to a chiropractor.
    sunladybargains 1 Replies
    • August 23, 2010
    • 03:38 PM
    • 0
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  • I have frequent myoclonic jerks, as well as negative myoclonus where I just fall down (and I have a suspicion that I can blame that on klonopin, as when they put me on klonopin I began falling up to 50 times a day and it got so bad I could not get up for fear of falling) Currently they have switched my diagnosis from ideopathic myoclonus to 'something in the tourettes family' which has helped a lot, as it means they have stopped giving me anti-epileptic medication (When all my EEGs were normal/inconclusive and I was unresponsive to anti-epileptic meds or they had huge side effects) My current primary medications are topamax and colonodine, as well as iron/vitamin supplements. The topomax has cut down on my jerking and paralysis seizures quite a bit as well as y sensitivity to sound/light/etc and the clonodine helps with the falling - though at too high a dosage I fall more as it lowers blood pressure a lot. For you I would agree with the person who said to detox! Weed off the drugs they have that you are on, don't go cold turkey, and never start more than one new major medication at a time until you know how you will react to it. It took me over a year to properly recover from the clonopin (although these days I have to use a walker and fall a lot due to the progression of my neurological conditions anyway, and it is a bit similar to the years ago that I was on klonopin, so I still wonder if it permanantly affected me some way) Some medications have very freaky side effects, so I would gather together a list of all the medications you have taken and the timeline and go talk to the nearest pharmacist who might have some information on interactions and things to avoid. Even normal vitamins and supplements -can- interact with prescription drugs if they have things added like chamomile or melatonin, etc, but those probably are not your problem I would guess.
    Amonite 1 Replies
    • August 24, 2010
    • 05:47 AM
    • 0
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