Tremor

[juliegee]

Hi All-

Mack has intermittently complained of a tremor in his thumbs. I've sort of ignored it as I don't want to pounce on everything and make him a hypochondriac . Lately, I've noticed his whole hand shakes at times, like when he's trying to pick up a pill. What's that about? Does anyone else experience this?

Julie

[Christy_D]

Yes, Cody has tremors in both hands. His has been non-stop for over a year now that he doesn't even really notice it. He can't hold his hands still for anything.

[firewatcher]

Julie,

This has been one of my biggest complaints! I have a tremor in both hands, feet, head and tongue . It is an enhanced physiologic tremor from the sympathetic overactivity. Propranolol has been the only thing to stop it for me.

[issie]

Yes, I was misdiagnoised as having Parkinson's for over a year and a half. The medicine made it worse though. So, some meds could cause it to be more pronounced. I still have the tremors despite not being on any meds. I bobble in my head, most of my tremors are on my right side -- hands, leg etc.

[sandymbme]

I too, have had issues with tremors. I was on Reglan for some time to try to get my GI tract to function, which made the tremors MUCH worse. But they are still present to a greater or lessor degree on occasion. Usually it is just one or two fingers, but sometimes my whole hands....

Sandy

[janiedelite]

Yes, I have a tremor when I stand up (probably from the elevated norepinephrine). Carvedilol completely made it disappear, even at a tiny dose.

[spaceorca]

Yes, Dan has lots of tremors in different parts of the body. You reminded me that he used to have them quite frequently in fingers and his hand. Those have not been nearly as common during the last few years. I think Trileptal, which he's taken for years, may have reduced those. But he still gets fairly severe tremors in his legs. Those come and go--I haven't noticed any particular patterns. When the tremors or tingling nerve sensations are particularly bad, he'll take a xanax--that often helps with the tremors. Sorry to hear Mack has this!

[erickamcc0523]

Oh yes, especially when I stand up. What ***** is when I'm having them when I'm trying to practice organ or piano. My fingers almost lock up and don't want to function. I hope that I'm able to learn how to play bagpipe (something I've ALWAYS wanted to do since I was 8) in spite of this.

[juliegee]

Thank you all for your replies. Have any of you seen a neurologist to investigate? I haven't told Mack's ped at Hopkins because I KNOW that's what he'll suggest. If this is common with dysautonomia, do we have to investigate it?

Sandy, Mack was also on reglan for about 5-6 months- vile drug. I do get angry when I recall how many phone calls I had to make to his ped GI to get him off & on the erythromycin. His nurse adamantly insisted Mack was fine, perfectly safe drug, Grrrrrr. Mack actually blames the tremor on that.

Thanks so much for all of the info-

Julie

[Chaos]

Yes to the hand tremors. Makes me crazy. The propanalol has helped a lot but hasn't stopped them completely.

I'm scheduled to see a neuro next week and will be asking about the tremors. I'll let you know what he says.

Hope Mack's feeling better or is he still down again from the tick bite?

[spaceorca]

Sandy, Mack was also on reglan for about 5-6 months- vile drug. I do get angry when I recall how many phone calls I had to make to his ped GI to get him off & on the erythromycin. His nurse adamantly insisted Mack was fine, perfectly safe drug, Grrrrrr. Mack actually blames the tremor on that.

Mack may be right: Tremors are a well known side effect of reglan. I don't understand why doctors prescribe this drug for kids! Sometimes the tremors and other neurological symptoms subside within a few months after stopping reglan--how long has he been off? You might want to note the problem to your pediatrician to see if there's anything to be done without extensive further testing. Since Mack already has a dx of POTS (and other diseases?), it seems unnecessary (to me, anyway) to do a lot of testing for other diseases that sometimes include tremors. But maybe mentioning it to the doctor would allay any of Mack's worries (e.g., maybe the doc would say that it probably is an after effect of the reglan) or maybe there's something the doctor would suggest that could help the tremors and other aspects of POTS. The most thoughtful doctors sometimes pick a particular POTS med out of the array because of a symptom like this. E.g., they'll think "well, this one is known to help tremors so let's try it, while that one can aggravate tremors so it would be the last one to try."

[Christy_D]

Cody also took Reglan(not daily) for a couple of months when they thought he was suffering from abdominal migraines. I wonder if he took enough of it to also cause his tremors?

Plus, 3 times when he was in the emergency room with migraines that wouldn't stop, they gave him an IV of Toredol, Reglan, and Benedryl. I imagine an IV of reglan is a pretty good dose of it.

[juliegee]

Thanks for your insightful replies. He's been off of the reglan for 4 1/2 years....so if it was a temporary side effect it should have gone away. It only came up during and aftre the reglan. If it really is from that drug- how infuriating .

I will mention this to Dr. Rowe & we will probably have to see a neurologist. The tremor isn't prohibiting him from doing stuff at his point. BUT, he's a big guitar player and is looking to study contemporary music production in school. I'd hate for this to get in the way if it worsens...

Has anyone received an explanation for WHY this happens- overactive sympathetic nervous system maybe???

Thanks again!

Julie