The Orthostatic Tremor Forum (archive)

hi
I would like to hear from anyone who has had success using clonezapam to help with OT. After seeing a neurologist in my home town for 6 years (my OT appears to have started after I was using reglan) and after his trying many many drugs all of whose side effects were horrendous (I am very sensitive to drugs), and after my reading about OT and telling him that's what I thought I had (up until then he just called it benign essential tremor), he decided to try me on clonezapam -- unfortunately he'd had me on valium for about 3 years (which helped somewhat) and had me do a cold turkey swap -- I had a horrendous reaction to that. He then sent me to the UCLA Movement Disorder clinic - the doctors I saw there, after reviewing all my neurologist's notes and looking at my MRIs, agreed that it is OT and have told me the only drug that has some success is clonezapam. They suggested my internist (who is also a specialist in drug monitoring) monitor my transition from valium to clonezapam . I am on week 2 of the gradual change and am actually feeling worse - now I have allover body tremors. Has anyone actually experienced any success with clonezapam helping their OT? I'm feeling desperate at this point. I cannot stand unaided for more than one or 2 minutes (though can walk quickly for 20 minutes) but am finding it increasingly difficult to perform my job.. I would love to hear other people's experiences. thanks

Hi,

I have tried the clonezapam in the past and I felt that it made me worse. I know it has helped a lot of people but that was not my experience. I am also very sensitive to medications but I don't know if that had anything to do with it or not. Maybe after you are on it awhile you will notice a difference. I hope that is the case.

Kate

I used Valproate about a year and found that helped. As my tremors increased, the dosage increased and I then got sideeffects. Now I am drugfree and can only stand without tremors for about 12 seconds. This is not possible to handle and I will now, starting today, try Clonazepam. I will gradually increase to 3 pills of .5 per day and see what effects I have on hte OT and if there are sideeffects.
My doctors (both the one here and Dr Bain in London) said that the addictiveness was not severe - not anything to worry about. But I have also understood that various drugs affects us differently. We just have to try to find what is best for each of us individually.

Best regards
the golfnut

thanks for your reply. good luck. and btw, clonezepam is difficult to withdraw from according to my internist who is also a specialist in drug withdrawal.

[quote="SBMum"]thanks for your reply. good luck. and btw, clonezepam is difficult to withdraw from according to my internist who is also a specialist in drug withdrawal.[/quote]

I have been told by Dr Bain in London who has had many OT patients on this drug. that withdrawal has not been very problematic. I also know, from the visit to my own doctor today, that the drug is used in much higher doseage for epilepsy (it's main area of use), than what I am going to use for OT.
I appreciate your kind advise, but I am also very confident that my doctors would not suggest this if it would cause me more problems than I already have.


I will let you know my experience in my OT-thread...
best regards
the golfnut

Golfnut, I would be very interested to know if your doctor has seen any success with using clonezapam with his patients and also how high of a dosage they need to use in order to achieve any success. So far I have only built up to 1/2 of a .5 tablet -- I am decreasing the valium I am on as I increase the clonezapam - however, I'm finding my all-over tremors are worse with the decrease in valium. I f you have a chance to ask DR. Bain his success rate, I'd really appreciate knowing! thanks, Lynne

Golfnut: How fortunate you are to have been able to consult with Dr. Bain about your OT. I consider him the leading authority on OT. We must work with our doctors to establish a prescribed dosage for us remembering we do not have anything available that will stop our symptoms completely. They merely take the " edge off" so coping is a little bit easier. Trying to maintain my independence as much as possible is my challenge to OT. Gloria

Hi
I have struggled with O T for over 20 years, at my last latest visit to The Walton Centre2 months ago . My Neurologist and I that I agreed that I had come to the end of the pharmaceutical route.I can honestly say that personaly ,I did not reap any benifit from the drugs regarding OT.
I am trying to maintain my independance , leaning on my Husband ha ha.
I cannot stand up at all, however I do cope with that, but I am finding slow movement is just a nightmare, and continues to get worse....How are others finding slow movement ?? I look longingly at the supermarket Auto wheel chairs , but will not give in just yet
We all react differently to drugs and I hope others will find benifit, If we dont try we will not know.
Kind regards
Maureen

Hi!
I am new to the site, but, I was on Clonazepam for a while and it did help. However, after a while the tremors were no longer being controlled with the dosage I was on. The weaning process from Clonazepam is tough. Since I also have fibromayalgia also my pain management PA was not comfortable raising the Clonazepam dosage with the other narcotics I am taking. So I was weaned off of the Clonazepam last month. Two days ago I was finally diagnosed with having OT and will begin taking Clonazepam again at a higher dosage. My concern is that it seems to take more and more Clonazepam to maintain control of the tremors.

Karen (Munchie)

Karen:
Because you are new to the forum I don't know if you have typed in clonazepam in Search at the top right hand corner of the pages of the forum. You can review 8 pages of postings about clonazepam from the beginning of the website. It is generally the first med that doctors recomend however like all medications they do not always work for everyone for whatever reason. You must give the amount and time to trial . Also I have found over time some people expect too much from the meds that are available for us. I call it the "asprin effect". It has been my experience that we do not have anything that is 100 % not even close. My medication has been neurontin ( gababentin) for 11 years. It just takes the edge off the density of my OT symptoms. However I still have my OT symptoms going but must know the time I have before the whole OT symptom load kicks in. When you have time wade through the 8 pages for an overview. Welcome again to the website, Gloria

I was switch from 1 mg xanax per day plus "as needed" to take before any stress events to clonazepam and didn't skip a beat stopping on and starting the other. I also take inderal for ET along with lithium for bipolar. As I've taken and responded well to lithium, I would never take any anti-seizure drugs that also act as mood stabilizers for bipolar. Last year a study was done about how meds worked for people. They found that for those people who had positive expectations, PET scan of their brains actually showed that their brains seemed to provide what was a chemical "welcome mat" and indeed those people had better effects faster. This study was done with antibiotics so quantifying the results was objective. As benchmarks, the study also included people who had an aversion to medications and a bunch of pound dogs who had the same infection.
The dogs and aversion groupd healed at the same rate. So I approach medications with a positive outlook and expect that I'll be in the 30% for which clonazepam works. So far, I feel as stable all the time as I did when I would take xanax and inderal for special occasions. I am very hopeful that, now that I have a clear diagnosis and treatment course, that both the POT and ET will diminsh their effects on my life. Joye