Essential Tremor Support Group

Hello!

I am new to the forum and saw that there was a group for this! I was completely surprised because I haven't found many people with this problem.

I have been diagnosed with an essential tremor after being under research at NIH and children's hospital. I've had the problem for 5 years.

I cannot write with a pencil nor do many things with my hands because of really bad pain. Is this normal amongst people with ET? I had botox injections for the second time two weeks ago and all they've really done is weaken my hand (which I expected).

What kinds of treatments do you all go through? I am not really in to taking medicine because I am still really young and don't know it's side effects in the long term.

As it was explained to me I have two brain cells off: 1 causing the tremor, 1 causing pain.

Welcome to the group! My name is Shannon and I'm 39 years old. I've had my tremor for as long as I can remember.

I haven't had a tremor explained to me as having brain cells off. Did your doctor explain it that way?

The type of pain I do have associated with my tremor is when my tremor is over-active and my muscles cramp up. Massage does wonders, but also meds, ibuprofen, and heat.

I've taken Propanolol for my tremor on an off. As far as I know, the only side effects are that it can make me sleepy and it lowers my blood pressure (which is why I get sleepy).

Shannon, when you suffer from low blood pressure do you get dizzy spells or feel like your gonna pass out?

ive been feeling like that lately and i dont know what it is i dont know if its another side effect from the propranolol. going to try get into the doctors tomorrow

Low blood pressure 40 and lower is life threatening. Yes you can feel faint and dizzy. I have a condition where when I stand or turn to fast i lose my balance

and feel light headed. My blood pressure drops...I don't know why and for the love of me I can't remember what you call it.

oh ok well lately thats been happening to me... whenever i stand up or walk for about 10 or more mins i start to feel dizzy and light headed, i went to the dr yesterday and he said my blood pressure was very low especially when i stood up it dropped compltely. all he said it could be just low pressure, a side effect from my propranolol or i could be anemic, i had to have a blood test i find out the results next week. in the meantime i just have to put up with it

Chloe - have you gotten this figured out yet. (I'm trying to catch up on posts so I may not have found your answer if you've already talked about this.) How much propranolol do you take? Is the dose too high thus making your blood pressure too low? There are alternatives to propranolol. I used to take Toprol. I think there is a generic for Toprol now but I don't know what it is called. Toprol is a bp med too. I was taken off it after many many years since my NP said it might be the cause for low blood flow to my hands. Next time I see her I'm going to ask about it again. Propranolol makes me queasy and gives me diarrhea. Weird but true.

Hugs,

Red

No I havent got it figured yet, all my blood tests came back normal so the doctor doesnt know whats wrong with me, all he said was if i kept feeling like it to go back to him and he would refer me to the hospital to get more tests done. i am currently on 80mg of propranolol and havent had side effects from it till now

my first diagnosis, the Dr. mentioned something about my brain not being right. he said if it was over just a little it might have been parkinsons. it was so long ago I cant be more specific

I've read, although I can't remember where now, that all tremors are related and all tremors have some component of Parkinson's. Scary! I don't remember now what that meant.

No passing out though, People! (that did happen to me once as well although I'd been up and walking around for a minute or two before I went down) So far, the docs haven't figured me out either. I was very very lucky I didn't truly hurt myself! I still have a mark on my chest from hitting something, probably the water bottle I'd gotten from the refrigerator. I fell October 12th, I think, so to still have this mark means I hit that thing pretty hard. I know I hurt like crazy after that happened and I really don't want it to happen again!

Hugs to everyone!

Red