Myoclonic Jerks

[crowebirds]

My daughter's newest symptom/condition is Myoclonic Jerks. They started a couple of months ago after an ear infection. The infection was difficult to treat and hard to get rid of. Some how the infection triggered shooting pain through out her body. Each time, the jerks would occur as a response. The episodes can last for hours at a time.

For those that have dealt with this, what can be done to lessen the severity and the time dealing with it?

[kclynn]

TLC's mom, I have no answers but sadly my son has had these Jerks since the major onset of his POTS. They are less when symptoms are less, more when other symptoms are present, nearly disappeared over the summer when he showed few other symptoms (only when he became very fatigued) and returned with the onset on symptoms this fall. He started Clonidine a couple weeks ago, they may be fewer (they were almost constant, now he goes hours without) but they are still there. The couple of ANS Dr. we have seen say they are not that familiar with this symptom (they are cardiologists and well known), suggest a neurologist. The one neuro we have seen is convinced they are psychological because he can't find a reason he is familiar with. I hesitate to take him to more Neuro's with out knowing they are familiar with Dysautonomia. Even if it is a more uncommon symptom I see that there are quite a few here who have said this happens, but now real explaination. My son also has tremors and this fall sometimes his legs get to really jumping, and I can feel them in his arms, shoulders. Not all the time, though his muscles are tight so suspect the symptom is actually there most of the time.

I know this probably doesn't help, just looking for answers, too. This is one of his most distressing symptoms because it is so visible, he has had kids tease him cruely now because of it.

[ramakentesh]

My body often moves or shakes involuntarily when my POTS is bad and i was told this is my body trying to basically 'shake' blood to my brain.

[anna]

HI KCmom, I do not recall! does you son have EDS as well as POTS?! Just that a number of EDSers seem to have myoclonic jerks diagnosed along with the EDS. We as a family have this problem running through the CEDS side of the family. I have had noticeable movement since being a toddler! the main stay of meds is anti epilepsy drugs but they play havoc on your fatigue and some other ANS stuff!! My son had a bad spell for a while and was prescribed sodium valparate all this med did was make him sooo tiered and not himself. We have found that the myoclonus is worse when the body is tiered or we have a bug in our system!!

TLC'mom I do not recall if your daughter has EDS either! I can tell you that surges in female hormones made my jerks worse as well.

[Dizzysillyak]

Klonopin is a common treatment for this. The natural alternative to klonopin is theanine. Sun theanine

is the best kind to get.

If I avoid gluten, I don't have these. You'd probably find info if you googled gluten myoclonus.

My trigger is gluten BUT your's could be something else. More than likely, it's something you're

ingesting. An integrative doctor will look for causes not just give you a drug ..

Magnesium might help lessen these but won't stop it if I'm having an episode.

And dpp-iv appears to help prevent this if I've eaten gluten ... Tc .. D

[potsgirl]

I get 'seizures' and then I pass out. This has just started happening in the past 3 months or so. I went in to see my neurologist (autonomic specialist Dr. Goodman) at Mayo in Scottsdale, and he told me that they're due to my BP being so low. Monic/clonic 'fits' are possible when your BP gets very low. My BP, while always low, has gone down recently, in every position. During my TTT there, I went from 115/60 lying to 65/48 when they first raised the table, and had a seizure right after that reading. We had to stop the test at 2.5 minutes.

[kclynn]

I don't think he has EDS. We just saw Beverly Karabin and we specifically talked about it because I know they see so many patients, and those with EDS also. My son is more flexible than lots of kids, he can bend and touch palms to floor, bend little fingers back, his knees go back a little when standing and elbows back a little, but neither is extreme. He also doesn't have the physical features, longer face bigger eyes, tall and lean, he is very average in his build and appearance. Her feeling was no, but I had been wanting someone to address this so this was good.

Also, they have studied some that have jerking following a faint, but his isn't at all like that.

His is worse when he is anxious, stressed, as I said if he has ANY other pots symptoms but sometimes they happen out of the blue when anxiety or stress doesn't appear to be present... Also when his vasal vagel is especially stimulated, such as extended time in the bathroom with IBS like symptoms, though we wonder if he zones out with brain fog in there sometimes

[Serbo]

I have EDS, the worst i ever got them was with uncontrolled low BP and being in a hypovolemic state whilst trying to do a complicated task, e.g talk to people standing, or even sitting.

Only really get them when anxious or dehydrated now

[crowebirds]

Thank you, everyone. She has tested negative to EDS (testable forms). May have type III or some strange variant. In some joints she is very flexible and in other joints has very little flexibility. Even though she does not have stretchy skin, she does have severe stretch marks; since she was 6 years old. She was on Klonopin already and it does help; however, due to suicidal ideation it has been stopped. Right now, they are very mild and not noticeable to someone who does not know, but they have not gone away.