[Guest]

I'm a new member of this forum! So in few lines this is my story. Almost a year ago my bf started to suffer from
"weird feelings" mainly shakings, tinglings (in all his body), also strange "noises" in his head.. like when the water is boiling "plop plop plop" or something like that... some aches in his chest, and stomach (lower and upper stomach), hot/burning sensation in any part of his body... hands, chest, legs, feet, etc... weird noises in his ears, loosing skin etc...

After some tests the doctor said that he had high levels of a substance called "cortisol", so they thought it was his glandular system the one that had the problem, so after more tests for the glands and for the endocrinologist system. All turned out to be "fine".. just the "#$"$# high cortisol.. but the strange thing was that some times the cortisol was ok or a little down.. anyway! When they were sure it was not a glandular problem the next option was a neurologist, and he diagnosed "Essential tremors" and also another illness called "Bening Fasciculation System" (uncoordinated twitching).

We want to get another opinion because we do think the neurologist diagnosed very fast! He still has shakings at nights, and his doctor said that any neurological problem could cause shakings at nights, and it's when his problem gets worst, sometimes at nights he would wake up because the shakings are bothering him alot, and when he wakes up in the morning the same alot of shaking...

The doctor didn't pay too much attention to other of his symptoms such as a burning/heating feelings in all his body, high cortisol, loosing skin he said all of them are caused by the stress, maybe the high cortisol yes.. but the loosing skin, and the other things?.. i don't know:S...

To the ones that are suffering from "essential tremors" do you guys have one of these symptoms too?.... (not the shakings but the loosing skin, or the heats, or the high cortisol, etc)

For the Essential tremors he's taking "clonazepam" or something like that... So to the ones that are going through the same situation, my question is this one:

What's the treatment that you are following guys? Is someone taking clonazepam too? is it helping? with my guy he has taken it for 2 days already and the first one was so awful, he was acting like a drunk guy, he was laughing alot, he couldn't even know if he was feeling the burning sensation or not, that night he did have a good sleep but when he woke up in the morning he was still shaking alot :S Does the clonazepam give you many secondary effects? like which ones? What is the treatment that has given you better results?...

I hope you can share your experiences with us! By the way my guy is 24 years old (too young to get this i guess :S :'( ) and thank you very much in advance guys for reading my thread!!! ( sorry for my english :S )

[Kristi_Lee2006]

I'm new to this forum as well. I'm a 21 f. I was diagnosed with essential benign tremor about 8 months ago, but had problems for about 3 years before I was properly diagnosed. When I originally went to a neurologist (who couldn't seem to diagnose me with anything) he gave me clonazepem and it did nothing to help my tremors, although it made me feel really out of it too like you described happened to your bf. He gave me a couple of other medications to try, that I can't recall now that also didn't help before telling me that he couldn't help me and if I wanted to be diagnosed then I would have to go to a research facility and that they wouldn't even speak to me since I didn't have insurance at the time.

I first noticed tremors in my right hand and only when I held it in certain positions or made certain movements. I had trouble writing for long periods of time, and as I was in college at the time it made it difficult. It slowly got worse to the point that when I was diagnosed 8 months ago I couldn't really move my right wrist without pretty bad jerking motions. I now have good health insurance and a great neurologist that was eventually able to diagnose me. I now take propranolol-a brand of inderol and it makes a huge difference. There are two types of propranol that I know of, the long-acting and the regular. The LA you take once a day and the regular you take 3 times a day. I work long hours so I had to switch from the LA to the normal. The side-effects don't interfere with your ability to function as badly as Clonazepem. However, it does make me feel very tired, and I sometimes get headaches and a little dizzy from it if I don't stay hydrated. This is because it lowers your blood pressure and heart rate, so if you normally have low blood pressure it would be a bad choice. My tremors get worse when I haven't had enough sleep, when I'm stressed out, when it's cold or too hot. Caffeine makes it much worse, so I avoid it completely.

It's a bit scary because ET can be progressive and no one knows how fast or how far it will progress. In 5 years I've gone from basically no noticeable syptoms to difficulty functioning without medication. It may not progress anymore than it already is, or it may get worse in 10, 20, or 30 years or sooner even, and sometimes it can be completely disabling, although most of the time that's not the case. Most recently I've had to up my dosage because the tremors have become more pronounced. I've noticed tremors in my left hand and tremors in my right arm as well. I've never woken up shaking as happened to your bf, but I don't know if that happens to some people with ET or not. I only have tremors when I move my muscles for the most part. Sometimes when I'm tense and stressed my right arm and hand will jerk a bit on its own, but not when I'm medicated. I hope this helps...sorry I couldn't give more specific info on his conditions, but these are all the syptoms I experienced. Good luck!

[JohnP]

Kristi, I've been taking a 120mg propranolol capsule daily for three years and a 100mg gabapentin capsule for three weeks without much improvement.
What is the strength of your medication?

[Kristi_Lee2006]

I take the same amount of propranolol as you take, 120 mg daily. I'm not familiar with gabapentin, though, what are the side effects like?

[JohnP]

I haven't had any side effects. I also didn't have much of a favorable effect from the 100mg daily dosage so my doctor increased the dosage yesterday to 300mg daily. I'll post the results in two weeks.

[Kristi_Lee2006]

That's good to know. I might consider using that prescription.

[JohnP]

You asked about side effects. I haven't experienced any during the 3 weeks of 100mg capsules or the 2 days of 300mg dosage, but if you go to the following site they list all the possible side effects:

http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a694007.html#side-effects

[macacoza]

I have E.T for many years...and have been on medication for about 12-15 yrs..can't remember exactly!..The dosage has been upped and changed over the years. Now I take 80MG of Propranolol AND 75MG of Primidone per day. The Primidone was added about 5 yrs ago..Alone they dont work. Together I get relief...not as much as I would like in the last yr. The last year ET has started to effect my voice...no longer can I sing at church...and voice shakes even singing with grandbabies...it is a heartbreaker for me, BUT..hey..I suck it up and go on!..Coudl be worse things i guess! I can still laugh and play with them! I am very interested in hearing how this Gabapentim works for you. On another thread I heard about Mirapex. I have not heard of either of these, but will surely ask my DR. Please let me know how it goes with you!
Thanks
deb

[JohnP]

I have never been one to refuse to follow my doctor's advice or question his choice of prescriptions, but after researching gabapentin I did not have good feelings about that drug.
Gabapentin's main use is for the treatment of epilepsy, an illess in which the patient suffers from seizures. Yet, one of the possible side effects of gabapentin is "seizures".
Two other side effects are "unsteadiness" and "shaking of a part of your body that you cannot control", both of which are found in ET. Strange that a doctor would prescribe medication that might produce side effects that are symptoms of the illness for which the medication was prescribed.
Two other possible side effects of gabapentin are diarrhea and constipation, two completely opposite conditions.
There are too many possible side effects for gabapentin. Sometimes I believe doctors prescribe something without really knowing if it will have a positive effect on the condition for which it is being prescribed. I'll have questions for my doctor when he prescribes the next medication.
It's been two weeks since I began taking the 300mg dosage of gabapentin and my ET is worse this morning than it was two weeks ago.

[macacoza]

I am so sorry to hear that you are worse..I dropped by my Dr. office on friday and left a note with the names of the 2 meds that I found here. HAve not heard back yet. Please let me know if you ahve any improvement!..Thanks
deb