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Old 03-04-2012, 04:04 PM   #1
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Essential Tremor treatment

My hand tremor has gradually worsened over the last decades to the point where I recently sought expert advice from my regular university hospital neurology department. (My mother was also a sufferer.)
They put me on Inderal but that did not make much difference to the tremor and had nasty side effects so I was changed to Mysoline (primidone). That was two weeks ago and I was started on 25mg per day, increasing to 50mg per day in the second week. The tremor is already greatly reduced (almost gone) but I am suffering terrible tiredness in the afternoons.
Has anyone else been through this with a successful outcome? I know there is no cure but a stable state would be welcome.
I have also heard that treatments like low dose naltrexone (LDN) may help.

 
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Old 03-08-2012, 03:41 AM   #2
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Re: Essential Tremor treatment

Now this is what worries me. The tremor seems to be coming back so, is this a game of catch and chase? Am I going to have to keep increasing the dose of primidone to the point where I am a sleeping zombie? If so, it would have been better to never start on this medication and put up with the tremor.
After I stopped the Inderal (propranolol), the tremor was worse than when I started and I developed high blood pressure - coincidence or was the Inderal responsible?
Is there anyone here who can advise me?

 
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Old 03-19-2012, 05:39 AM   #3
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Re: Essential Tremor treatment

I used to get hand tremors. I was put epilex chrono (sodium valporate) for 3 yrs. Dosage started from 200 mg twice and went on till 500 mg twice. After which a stable state was achieved. It was reduced and stopped. The tremor re-occured and the medication started again. This time it was 500 mg twice again. During the course I started experiencing side effects and the medicine was changed to levesam (levetiracetam) 500 mg thrice. Once again the medication was reduced and stopped during a course of three years. Two months after the medication was stopped I experienced a seizure and was unconsious for about 30-40 mins. I was hospitalized. And, now I am on levesam 500 mg thrice again. This time I doubt that the doctor would stop the medication any time soon. But the stable stage has been achieved, and as long as I am taking the medication I guess I ll be fine.

So, yes it is a game of catch and chase until the right amount of drug to which your body responds is found.

I dont know if we suffer from the same condition or not..but this was my case.

I have been diagnosed with Juvenile Myoclonic Epilepsy.

Take care..

 
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Old 03-19-2012, 04:25 PM   #4
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Re: Essential Tremor treatment

Thanks for your response. I don't think I have the same condition as you because mine only started to become a nuisance in the last ten or twelve years and my mother also had it in her later years. I'm still not convinced that it is ET because it only affects my hands and is particularly evident when I'm holding a cup or if I press my fingertips lightly on a table top.
I tried increasing my dose of primidone last week but it made the tremor worse and also gave me dry eyes.
I'm sorry to hear about your seizure. That must have been very unpleasant.

Last edited by TopGeek; 04-04-2012 at 03:20 PM. Reason: clarification

 
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Old 06-30-2012, 12:22 PM   #5
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Re: Essential Tremor treatment

ET can affect only your hands. It affects my hands, neck and head. I am on propranolol and have experienced the same effects as you in that once I think I am at the right dosage the tremor starts again and I have to increase the dose. My neuro has now added Namenda and it seems to be helping. You may need two different meds to control the tremors.

 
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Old 07-05-2012, 07:08 AM   #6
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Re: Essential Tremor treatment

Quote:
Originally Posted by moreorlessly View Post
ET can affect only your hands. It affects my hands, neck and head. I am on propranolol and have experienced the same effects as you in that once I think I am at the right dosage the tremor starts again and I have to increase the dose. My neuro has now added Namenda and it seems to be helping. You may need two different meds to control the tremors.
Many thanks for your response. This is one of those conditions that it seems very difficult for others to understand. They think it's just an embarrasing thing to be around. I have difficulty even communicating to my wife that I have aches in the affected limbs and the frustration of just trying to lift a drink to my mouth without spilling it sometimes makes me want to scream.
I really do not want to increase the primidone any further as I now have constantly droopy eyelids.
I have another neuro appointment in a couple of weeks so will ask about Namenda.

Last edited by TopGeek; 07-05-2012 at 10:17 AM.

 
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Old 07-05-2012, 07:43 AM   #7
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Re: Essential Tremor treatment

Namenda is being studied in LA since 2007 for both parkinson's and essential tremor. I can only tell you that it has done wonders for me. I am going back down to 80 mgs. of propranolol a day and maybe more as I increase the Namenda.

 
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Old 07-18-2012, 03:45 AM   #8
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Re: Essential Tremor treatment

thanks for this information, me too knew only primidone and inderal. i shall try this new drug .

 
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Old 08-23-2012, 05:09 AM   #9
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Re: Essential Tremor treatment

Someone on another forum has drawn my attention to another -blocker, Nebivolol, that has had considerable success in research trials, not only for essential tremor but also for blood pressure reduction. Its advantage over other -blockers is that it has less side effects and even stimulates nitric-oxide vasodilation and does not dampen libido like other -blockers. All-in-all, it sounds like the ideal solution for those with essential tremor and/or high BP, who can't tolerate the side effects of propranolol or primidone. I shall be discussing this with my neurologist when I next see him in a couple of weeks from now.
I have searched these boards but can only find references to its use for BP reduction.

Last edited by TopGeek; 08-23-2012 at 05:30 AM. Reason: correction

 
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Old 08-25-2012, 08:50 PM   #10
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Re: Essential Tremor treatment

Been on 50mg primedone for 4 months for ET and myclonus worked 100% for the ET and about 80% for the myclonus , the doc said it would help my restless leg but didn't do a thing for that ,I want to go back on the requip but it makes me so dopey at times I forget my own name , no side effects from the primedone
good luck to you

 
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Old 08-26-2012, 05:10 AM   #11
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Re: Essential Tremor treatment

Quote:
Originally Posted by capatga View Post
Been on 50mg primedone for 4 months for ET and myclonus worked 100% for the ET and about 80% for the myclonus , the doc said it would help my restless leg but didn't do a thing for that ,I want to go back on the requip but it makes me so dopey at times I forget my own name , no side effects from the primedone
good luck to you
Thanks for your comments. I am taking Minipress (prazosin) along with Mysoline (primidone) and as both have tiredness listed among their side-effects, that perhaps explains why I have this constant droopy feeling and heavy eyelids.
I used to suffer from restless legs until I started taking some European pills called Osteo Plus. They contain Calcium, Magnesium Vitamin D3, Boron, Copper and Zinc. It must be five years now since I had restless legs and I had them for years before that. I would spend hours trying to get to sleep with my legs just twitching the whole time. Those pills certainly fixed the problem for me.

Last edited by TopGeek; 08-28-2012 at 07:21 AM. Reason: additional info

 
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Old 09-16-2012, 03:24 PM   #12
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Re: Essential Tremor treatment

Fortunately, I managed to persuade the neurologist to let me transfer to nebivolol. Unfortunately, although I could start on the nebivolol immediately, I have to wean myself off the primidone slowly. It will apparently take a few weeks to eliminate it completely.
The neuro did suggest staying on the prazosin as there is some complementarity between the selective alpha1 and beta blockers.
So far, at two weeks into the change, I have not seen much difference although my tremor seems a little worse. I am still very droopey eyed and often need an afternoon nap.

 
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Old 10-14-2012, 11:38 AM   #13
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Re: Essential Tremor treatment

Well, it is now one month that I have been taking nebivolol. I finished weaning off primidone a week back and also increased the nebivolol from 10mg per day to 20mg per day. Unfortunately, the hand tremor is quite bad now so I do not think nebivolol is a viable treatment. I could increase the dose to 40mg per day but I am not hopeful. On the other hand, nebivolol has stabilised my blood pressure in the normal range.
This (ET) is a wretched condition for which there seems to be no satisfactory solution.

 
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Old 02-24-2013, 07:27 AM   #14
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Re: Essential Tremor treatment

For the next stage in my saga - I did get some tremor relief from the nebivolol and the tiredness wore off but I would still like to find something more effective.
I did some research and found that a Parkinson's drug (Pramipexole) had shown some success with ET. I asked my doctor to allow me to try it and he gave me a prescription. This drug has some nasty side effects so has to be gradually increased from a very low initial dose up to the maintenance level. I immediately suffered the first nasty side effect of nausea - no vomitting but the constant feeling that you might throw up at any moment. Then I got the second side effect of drowsiness - in fact, the sudden need to sleep for two hours every afternoon. I got to the third level and then suffered three days of violent diarrhea. Without any positive effect on my tremor, that was enough for me and I started down titrating the dosage and finished with pramipexole for good. So, I'm back to square 1. I'm still taking nebivolol and my tremor continues to embarrass me.

 
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Old 02-24-2013, 09:27 AM   #15
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Re: Essential Tremor treatment

Yes, I am beginnning to think the tremor is better than the meds they prescribe. I am off of propranolol completely. It made me tired and I gained 30 lbs in 6 months. I am now only on Namenda. It's expensive but the only side effect I have is ringing in the ears. I see my neuro in 2 days. I am sure she will want me on a second med. I am not sure I will go along with it. With every drug there is a nasty side effect.

 
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