kclynn Posted February 25, 2012 Report Share Posted February 25, 2012 My son had a period of relative relief from these for almost a couple of months. Early December we added Clonodine, mid December Focalin and both have been very good meds for him, reducing anxiety, clearing the severe brain fog which increased his functioning, his activity and social life improved, he didn't miss any school, he has been really active. About 3 weeks ago the tremors started up and also the myoclonic jerks. I almost feel like his body is saying too much activity! They have been steadily increasing and are definately worse at night. They have always been worse in the evening. Does the Focalin wearing off have anything to do with this? So hard to see him like this again and he is having a hard time, too. His muscles get so fatigued and week from the constant spasms all over. It seems like he will get a big chill right as they come on. Cold air will do it but sometimes it is a coldness on the inside. What causes this? The old neuro we saw last year felt they weren't organic in spite of us suppling him with a Mayo dx of autonimic dysfunction (pots) which he said he had no knowledge of but did respect Mayo. The Dr. at Mayo had no opinion on this either even though I sent videos of some of his worst ones. It is very frustrating! They came on last year at the same time all his other symptoms did and subsided when his other symptoms were better over summer and have come back since this fall. Unfortunately it is in his records which makes me leary of seeing another neuro at that facility and they are the only ones to see kids under 18. Sorry this is so long, it just hurts so much seeing him struggle with this. Quote Link to comment Share on other sites More sharing options...
issie Posted February 25, 2012 Report Share Posted February 25, 2012 I have those tremors too. When I'm over tired or have over worked or stressed - they get worse. Some lights will trigger them too. I think it's just the autonomic system goes into over drive. I've also found that some herbs and medicines will make my tremors worse. Benadryl always make me shake, also ephrine - like from a dental shot. It's really hard to figure out what the triggers are - just know there are others that have them too. Sometimes, they are worse than others. It makes sense if he is pushing his activity - maybe, his body is trying to tell him to slow down a little. There may be some stress that he isn't talking about too. Stress gets me everytime.Issie Quote Link to comment Share on other sites More sharing options...
kclynn Posted February 25, 2012 Author Report Share Posted February 25, 2012 Thanks Issie, He is 16 - yes, there is stress! I do think that makes it worse. I just gave him Benadryl to help him get to sleep. Seems to be working. Quote Link to comment Share on other sites More sharing options...
anna Posted February 25, 2012 Report Share Posted February 25, 2012 I have bad myoclonic jerks, had them since babyhood, my are always worse when I am coming down with something, I am worn out or when my ANS stuff is taking a turn for the worse. My myoclonus has been linked to my EDS as it comes down the side of the family that have EDS as well, my 3 children are also affected in varying degrees. My geneticist feels they are linked to the EDS, which makes sense because I do jerk much more when my joints are over used badly! What I mean is if I keep my body well supported with good exercise I have less jerks, but when I over do it and do stuff that makes me more unstable my jerks are so much worse. I have found that all the meds used to treat the myoclonus do nothing except make me spaced out, but I found very very small doses of muscle relaxant works the best on me.Sorry I do not recall if your son is an EDSer or hypermobile, but I have met many bendy folk on line that have myoclonus as well. Oh and when my sister went for tests her neuro explained he thought that her myoclonus could be linked to her bodies reaction to adrenalin,that could link in well to POTS I think. Quote Link to comment Share on other sites More sharing options...
issie Posted February 25, 2012 Report Share Posted February 25, 2012 Well, Benadryl will make me sleep - but, the next day - I'm really shaking. It makes me so much worse. Quote Link to comment Share on other sites More sharing options...
kclynn Posted February 25, 2012 Author Report Share Posted February 25, 2012 Anna, Thanks for all the info. He has not been diagnosed as EDS. He is quite flexible, knees and elbows go back a bit, thumbs go back but he can't but them near to his wrist, can touch the floor with his palms standing flat foot and can do the splits. He also gets myofacial pain especially in his upper back. I had Bev Karabin look at him but she didn't feel that any of this was to the extent of EDS.Issie, I wonder why that makes it worse. Doesn't seem to have that effect. His is always worse when tired but of course the tremors are extremely fatiguing themselves but don't allow him to sleep! It is weird how the Focalin seems to help but then they come back as it is wearing off. Obviously he can't take Focalin at night. The Focalin isn't causeing it I am quite sure as he has had this since last year and I am quite sure if he didn't have it he would be tremoring all day long when has this. He might still be tremoring some, but it isn't visible to me. He also has horrible GI troubles for months and months, and they have always made the tremors worse as well. Quote Link to comment Share on other sites More sharing options...
issie Posted February 25, 2012 Report Share Posted February 25, 2012 Interesting . . .I have EDS too. Quote Link to comment Share on other sites More sharing options...
Ashelton80 Posted February 25, 2012 Report Share Posted February 25, 2012 I am sitting here shaking with tremors right now. Is his volume ok? Mine are always triggered by low volume usually because I can't keep it up by mouth when I am having gastro problems (ie diarrhea) like I am today. These were all a memory last summer while I was exercising. It helped them soo much. They are the worst!! My heart goes out to you and your son. Quote Link to comment Share on other sites More sharing options...
anna Posted February 26, 2012 Report Share Posted February 26, 2012 KCmom, In theory your son might be hypermobile then, have you looked into to Joint Hypermobility Syndrome? This may be worth a read, http://www.hypermobility.org/whatishms.php Quote Link to comment Share on other sites More sharing options...
forevertired Posted February 27, 2012 Report Share Posted February 27, 2012 kcmom,I have myoclonic jerks, essential tremor, dystonia, a tic disorder in the neck, and a parkinsonism tremor. I also have been diagnosed with Joint Hypermobility syndrome. I have been seeing neurologists since I was a child. My myoclonic jerks started when I was a teenager. None of my neurologists (I have seen quite a few), including my movement disorder doctors feel that the movements (the jerking and tremor) are in any way caused by autonomic dysfunction. They feel my autonomic dysfunction is caused by the same thing causing my movements. Hyperadrenergic pots can cause tremulousness but has not been tied to myoclonus. In my opinion, it may be helpful to get your son seen by a movement disorder doctor, not a regular neurologist. A regular neurologist may not be able to distinguish your son's movements and thus may not be able to help your son get the treatment and testing he needs. I don't know where you live but I saw some movement disorder doctors at Seattle Children's hospital and UC Davis when I was a teenager. If you don't feel comfortable with the doctor's at Mayo, then perhaps you could take him to a children's hospital that has a movement disorder doctor. There are not that many disorders that cause Myoclonus, however most of them, can possibly have very negative effects on one's health as they get older, if not properly treated and diagnosed. Unless your son's movements were caused by a birth trauma.Clonidine probably helped your son's jerks for a time as clonidine is a medication used to treat tic disorders. However most people with movement disorders will be able to tell you that a medications effectiveness wears off over time, thus the dosage needs to be increased or a new medication tried. Some doctors dismiss movement disorders when a patient already has an autonomic dysfunction. Your son's autonomic dysfunction may be caused by what is causing your son's movement disorders. If your son truly has myoclonus and not tics, it may be a good idea to get your son seen by a movement disorder doctor. In my opinion, he may benefit from getting seen by one either way, just so that he can get the help he needs. Some adult movement disorder doctors will see teenagers if there are no pediactric movement disorder doctors in the area.Do the jerks come and go? Are they around all the time? Has he had the jerks and the tremors for years? Did they start at the same time? Does he have tremors when resting or only when moving? Are you sure your son has myoclonic jerks and not tics? The reason why I asked this is because clonidine appears to have helped your son's movements. Also, because if your sons jerks come and go, even when not on clonidine (meaning he is not always jerking) it could be a tic disorder. My tics come and go. I have myoclonic jerks all the time. A lot of doctors and people will confuse tics and myoclonus. If your son can feel them come on, or temporarily stop them, then it is most likely a tic disorder and not Myoclonus. Myoclonus is a rare movement disorder. Tics are common. It is also possible that your son has chorea, or any other number of jerk-like disorders, instead of tics or myoclonus. A movement disorder doctor may be able to tell the difference.By the way, your son most likely shouldn't be taking Focaline anyways, as it is contraindicated in people with movement disorders, especially tics, and thus can and probably is making your son's movements worse. I would suggest asking your son's neuro or movement disorder doctor (if you see one) about whether your son should continue with that med. It might also be playing havoc with your son's autonomic dysfunction. For example, when I was taking Flexeril (bad for people with autonomic dysfunction) it would make my movements worse every time it wore off.It is also good to have your son see a movement disorder doctor as you will find that many many meds will make your son's movements worse. For example, florinef made my movements worse.If that doctor is a good one they will help you find a set of meds that work best for your son.ANNA,I am surprised that they are tying your myoclonus to your EDS. Have you seen a movement disorder doctor or just a geneticist? Who diagnosed you with myoclonus? Your geneticisit, Primary care doctor, or a neurologist? Quote Link to comment Share on other sites More sharing options...
anna Posted February 27, 2012 Report Share Posted February 27, 2012 Hello forevertired,I was diagnosed with Hereditary Essential Myoclonus by a neurologist (I think he had an interest in movement disorders as he also run a dystonia clinic) after a number of tests to rule out epilepsy. I think the main reason the HEM has been tied in with the EDS is that each and every member of my paternal family that have HEM also have classical EDS, thus the geneticist has linked the two conditions as co-morbids in our families case.Though I have been thinking about this over the last few days and do wander about this, I have had the myoclonic type jerks since I was a baby from all accounts, I would trip and spill things all the time, I have the movement every day, they are more like action myoclonus though, mine start in my tummy and radiate out to arms, legs and neck, these movements fluctuate, some days I can have little only mild involvement, other days I can hardly walk, due to the movement being so violent that it throws out my joints. I have found no relief from the meds I have been given to help with this, small amounts of alcohol can help reduce the movement sometimes but I do not tolerate it well ha that is probably a good thing! A number of Dr's have questioned whether the myoclonus may lead to my ANS malfunction, and we have a Dr. looking into to this at the moment. Quote Link to comment Share on other sites More sharing options...
Sally22 Posted March 6, 2012 Report Share Posted March 6, 2012 I have had Dysautonomia (POTS, OH) for about 8 years now and I started having what movement disorder doctors are calling myoclonus or belly dancer dyskinesia in my abdominal area. It is very rigid and often time makes it hard to eat without food coming up. When I asked if these two are connected one of them said it is highly doubtful (since more sensor nerves), but it just seems too coincidental to me. The trigger for my movement disorder is movement and the rigidity seems to be traveling into my neck area. I hope you find something that helps you more, but I would get another opinion if you can from a movement disorder specialist.Good luck,Sally Quote Link to comment Share on other sites More sharing options...
bellgirl Posted March 6, 2012 Report Share Posted March 6, 2012 I have tremors and shakiness on occasion, too, but I seem to have more problems with rigidity, but since I have been on Clonazepam/Klonopin it has helped a lot. When I am more symptomatic with my Dysautonomia, I am worse...so sorry your son is going through this Quote Link to comment Share on other sites More sharing options...
kclynn Posted March 6, 2012 Author Report Share Posted March 6, 2012 Sally22, I too think it is too coincidental, both the tremors and jerks came on at the same time he had a huge pots crash last year, got better when everything else did. Anna, before the focalin he had ALL of the movements prior and has even had them worse. Maybe related but .. You made some interesting points, though. Kids are making fun of him at school again. Breaks my heart in a million pieces. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted March 6, 2012 Report Share Posted March 6, 2012 Sorry if I've mentioned this before but all these symptoms can be caused by gluten. Most, if not all if my neuro symptoms were from gluten. Theglutenfile explains this .. I've met some people who react to casein, soy, cirn, glutamates, dyes, msg, etc too tho. Autistic kids who are seen by dan practitioners are put on a gfcf diet because it helps many of them. Tc .. D Quote Link to comment Share on other sites More sharing options...
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