DRUG CLONAZEPAM

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Joyce Rayburn
Posts: 5
Joined: Sat Sep 22, 2007 9:29 pm
Location: Cleveland Tennessee

DRUG CLONAZEPAM

Post by Joyce Rayburn »

dEAR GLORIA I HAVE RECENTLY BEEN PUT ON THE NEW DRUG CLONAZEPAM. ARE THERE ANY OF YOU OUT THERE WHO HAVE BEEN HELPED WITH THIS DRUG. i AM ALSO TAKING TREATMENTS ON A WAX D THEREPY MACHINE AT A CHIROPRATOR OFFICE WHICH SOME PEOPLE SEEM TO BE BEING HELPED BY THIS PROCEDURE IF THERE IS A BACK PROBLEM INVOLVED WHICH ATTRIBUTES TO WORSE PROBLEMS.
I WOULD LOVE TO HEAR FROM SOME OF YOU WHO KNOWS THE TERRIBLE FEELINGS OF THIS DISORDER.
JOYCE
franann50
Posts: 19
Joined: Thu Jul 12, 2007 10:28 am
Location: Brockton, MA

Post by franann50 »

Joyce, I have been taking Clonazapam for a few months now. Can't say that it really helps a lot, but it takes the edge off for a while.
Also relieves some of my anxiety about it. I take it as needed, but don't want to start taking too much , because there is no where else to go with it.
I'm considering asking about something else at my next appt.
It does make me sleepy unless I force myself to work around it.
Good luck
Fran
Frieda
Posts: 2
Joined: Sun Apr 11, 2004 6:00 pm
Location: Bark River, Michigan
Contact:

clonazepam

Post by Frieda »

I was put on clonazepam in May of 07. I take two tablets of 0.5mg when I get up, then again at 2:30pm and then when I go to bed. It has hwlped me a great deal. : :D I did not how much they helped me until on Nov,23,07 my family doctor took it upon herself to cut my doses to just on tablet 3 times a day, Let me tell you that I felt like she sent me to He--. I was not able to speak more than two words at a time because my whole body was shaking so badly. I tried to keep my head still to talk and that resulted in cramps in my shoulders. I walked just like a zombie in the old black and white movies. :( this all happened within three days of the change. I called her up and told the nurse what was going on. She could tell just by my voice. It took my dr. three and a half weeks to put me on original dosage. I felt like I had lost three weeks of my life. This was just before christmas. It took me 5 days to trim our tee. I had an appt. with her after christmas and told her how angry I was with her for putting me back in a wheelchair. Before all of this I was able to make quick trips into stores without my chair or walker. All she said was "maybe I cut the meds to fast" :x I also suffered a slight stroke during this. Thank goodness there are no lasting effects other than I get words mixed up. Sometimes my husband willask me what I am trying to say. I will ask him what I said and then I try to correct myself. I am so glad to be back on reg. dosage that Mayo Clinic put me on, now I am real active at the YMCA. I go 5 days a week and am gaining lots of strength back. Sorry this was such a long message, but I get so angry when I think of what she put me through. Keep up your hope and just keep putting one foot in front of the other. Good luck to you, Frieda
Marianne
Posts: 97
Joined: Thu May 19, 2005 7:59 pm
Location: New Jersey, USA

Clonazapam

Post by Marianne »

Yes, I've been on Clonazapam for the last 12 years with increasing dosage. Right now, I am on 10 mg daily; however I am also on Provigil which helps the sleep problem a little. I just saw my neurologist today. He has prescribed numerous drugs over the years; however, Clonazapam seems to be the constant. He is cutting my dosage down to 8 mg daily and is trying Sinemet (Levodopa/Carbodopa). He is titrating it; starting out with 1/2 of a 25 mg pill 3x daily. He increases each week so that at the end I should be taking 50 mg 3x daily (if I reach that point). At this stage in my life it is becoming more and more difficult to deal with this debilitating illness. I thank the good Lord for my husband; I could never do it myself. I've been able to convince the health insurance company of my need for a motorized scooter and after 3 denials, (after I was given the opportunity to speak for myself), they overturned the denials and I was able to get a motorized scooter which helps tremendously both at home and when I get out. It comes apart so that it can go in the back of the SUV, but it's heavy and that has to be done by my husband. However, at home it's all put together and I am able to get around. If I can't get my scooter in the truck then I take my walker which has a little seat on it so that when my legs are about to give out, I can sit. This illness is so debilitating I've asked my doctor about permanent disability. He doesnt seem to believe the trials and tribulations of this debilitation and will not support me for disability. He once called it an inconvenience and then I realized that although he is one of the top 10 neurologists in movement disorders (in the US) he has no idea of what agony we go through to perform the simplest things. He says he only has one other patient with OT.

Well, I figured I would let you know about my new medication. I really don't hold out any hope; none of the others in the past have made a difference.

Please take care (all of you). Walk carefully (I fell last November and tore my rotator cuff so badly that they could not repair it)

Kaylie :)
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Clonazepam

Post by Betty »

Good morning all!

I was just checking the Forum for the latest information regarding the meeting to be held in Rochester, MN; having one (perhaps more) neurologists from The Mayo Clinic meet with OT sufferers.

If you have not seen this discussion, you might be interested in checking it out. As of now, the meeting is to take place in April (exact dates are in the works). If you would be interested in attending, please let Peggy know by posting a note. You will find all the information Peggy has posted so far.

Now; for the question being discussed regarding clonazepam. I am now taking clonazepan ~ but the lowest amount available ~ because I am so sensitive to most medications. I have tried so many and have been unable to take them because of side effects. Clonazepam is the only one I have been able to tolerate.

Because the dosage is so low ~ 2 mgs. ~ one in a.m. and one in p.m., I don't see much improvement; but when I take more, it DOES make me sleepy unless I stay busy and in motion. This I find exhausting; and it leads to cramping in my feet and legs. So...I continue to take the low dosage and learn different ways of coping.

Joyce, I hope you find some relief; but as Gloria has said so many times; "there is no magic pill which will make the symptoms totally disappear". We just keep trying to find what will work best for each of us.

Franann, I can relate to what you are saying, but when I have stopped taking it; I realize it does help ~ ever so slightly. I think we are all looking for something to give us more stability and freedom. Don't give up; keep trying!

Frieda, I can certainly relate to you; perhaps because one of the medications I was given was TOPOMAX and that one really threw me for a loop. I became depressed and anorexic within a few days and by the time I saw the doctor ~ even after calling his office and never receiving a return call ~ I continued to take the medication for another 10 days. (My brain was 'fuzzy' and I was not thinking clearly.) By the time I saw the doctor, I had lost 14 pounds and was becoming very depressed.

He said he had made a note on my file to inform me to stop the meds immediately ~ yet NO one had called me to give me this mesage. It took several weeks to get off the medication and several months to get it out of my system, regain the weight and the depression to disappear. I feel we should all ask WHAT side effects we might experience before starting a new medication; I do at this point.

Of course, there will be some side effects to all medications; and most we can handle, but there are some which I think we should think about before making a decision ~ just my opinion! Good luck to you Freida!

Kaylie, you are one of the few who has said you find this to be such a debilitating illness; I feel the same way. Perhaps it's because I have been unable to take any of the medications which many find to be quite helpful in living a somewhat 'normal' life. With OT; life will NEVER be normal again, but we must learn to live the best we can with what we have been given.

I, too, feel mine is progressing, but you sound as thought you may be on a faster track than many of us. It's hard to compare through writings; I am so sorry, but don't give up ~ keep trying ~ that's all we can do and try to share our experiences with others. It does help!

I know I have discussed another topic here, but I thought it might be helpful to know what is happening ~ this is the first time we ~ as OT sufferers, have had any neurologists TRULY interesting in us as a group.

Good luck to all,

Betty 8)
Chris
Posts: 91
Joined: Sun Dec 26, 2004 2:28 pm
Location: Okanagan Valley, British Columbia, Canada

Clonazapam

Post by Chris »

Hi all.....just thought I would post a quick note. I didn't find Clonazapam really helped even though I was on it for a few years. I did find that is changed my personality somewhat (according to my husband) as he really noticed a difference when I was weaned off it. I have tried various other medications during the last few years....the last being Carb/Levodopa combination......I found this in fact to make my tremor worse when I got up to full strength (can't remember dosage). When I tapered off again it did get a bit better for a short time. I am not on any medications at the moment except for Wellbutrin to help with my panic attacks which can happen if I get into an awkward situation and am not able to sit down or walk. I am learning to live with this problem and I would definitely say it is progressing quite a bit lately. Thank goodness for my wonderful husband.
My husband and I would really like to attend the meeting in April but unfortunately that is the one time this year that we are really committed somewhere else. My husband is the technical chair of a major conference in Whistler that particular week and weekend. I would really like to be included in anything that comes about from this great opportunity and want to hear all about it. Maybe next time.
Take care all and hang in there.
Chris
stella R
Posts: 103
Joined: Thu Jan 17, 2008 2:51 am
Location: winnipeg, manitoba, canada
Contact:

hi

Post by stella R »

HI all,
Chris it is too bad you won't be able to attend the meeting.
We will certanly let you know what the outcome is.

I too have got a motorized chair.
Just to use around the neighbourhood. MY insurance covered it so im
hopeing it will help me get around a bit more.
I have not been on clonazapam. The only drug i have taken is
gabapentin 900 m a day.
It does seem to help a bit and really helps with leg cramps and
sleeping at night.
bye
stella
daphne
Posts: 10
Joined: Sun Feb 04, 2007 8:49 am
Location: Oxford, England

Re: DRUG CLONAZEPAM

Post by daphne »

Joyce Rayburn wrote:dEAR GLORIA I HAVE RECENTLY BEEN PUT ON THE NEW DRUG CLONAZEPAM. ARE THERE ANY OF YOU OUT THERE WHO HAVE BEEN HELPED WITH THIS DRUG. i AM ALSO TAKING TREATMENTS ON A WAX D THEREPY MACHINE AT A CHIROPRATOR OFFICE WHICH SOME PEOPLE SEEM TO BE BEING HELPED BY THIS PROCEDURE IF THERE IS A BACK PROBLEM INVOLVED WHICH ATTRIBUTES TO WORSE PROBLEMS.
I WOULD LOVE TO HEAR FROM SOME OF YOU WHO KNOWS THE TERRIBLE FEELINGS OF THIS DISORDER.
JOYCE
daphne
Posts: 10
Joined: Sun Feb 04, 2007 8:49 am
Location: Oxford, England

Re: DRUG CLONAZEPAM

Post by daphne »

Hello Joyce

Re your question about 'Clonazepam' - I was diagnosed in 1995 (by a Dr who was working in Oxford UK for a couple of years - His name was Dr Silburn and he came from Australia) luckily for me he knew straight away what my problem was and he put me on 'Clonazepam.'
He put me on 1 x.5mg tablet a day and I must say it worked realy well. I was able to stop and look in shops without my tremor - I could hardly beleive my luck. After about a year I found it wasn't working so well and I went on to 2 x .5mg a day which worked very well. As the years have gone by I am now up to 4 x .5mg a day and to be quite honest they don't seem to help at all now. Unfortunately Dr Silburn went back to Australia and there are NO
Specialist in the Oxford Area that can deal with OT. Although I have a wonderful GP unfortunately he is not a specialist in OT and all he can advise is to take more 'Clonazepam' which I really don't want to do.
Although I still take 'Clonazepam' I have never had any side effects from it at all.
I suspect if I came off it my OT would be worse.
I don't know if this will help or not but this has been my experience.
(It would be great if I could find out where Dr Silburn is in Australia - I would contact him and ask his advise)
Best wishes
Daphne (UK)
Blossom
Posts: 19
Joined: Sat Mar 18, 2006 7:04 am
Location: Canberra Australia

Re: DRUG CLONAZEPAM

Post by Blossom »

Daphne

Which Dr Silburn in Australia? If you have any more details (such as first name, speciality) then it should be possible to locate him. The Movement Disorder Society of Australia http://www.mdsa.org.au/page/office_bearers has a Dr Peter Silburn from Queensland as one of its Councillors

Blossom
daphne
Posts: 10
Joined: Sun Feb 04, 2007 8:49 am
Location: Oxford, England

Re: DRUG CLONAZEPAM

Post by daphne »

Hello Blossom

Many thanks for the information re Dr Silburn. Yes his name was Dr Peter Silburn and I have gone on to the website and emailed them to see if it is the same one andto ask if they would be able to give me his email address.

Thank you once again.

Daphne (UK)
Catherine
Posts: 30
Joined: Mon Nov 17, 2008 3:22 pm
Location: Ireland

Re: DRUG CLONAZEPAM

Post by Catherine »

I have just posted a message regarding changing from clonazapan to mysololine (Primodine) with great success - posted it in I think New topics but cant find it now- anyway the basic message is that clonazapan did not do anything for me but the Mysoline (just half a 250mg tablet three times a day ) has made a huge difference.
Ann Dodd
Posts: 14
Joined: Sun Jun 28, 2009 12:27 am

Re: DRUG CLONAZEPAM

Post by Ann Dodd »

Ann Dodd - Brisbane. Australia.

I am going to Professor Peter Silburn on 4th August re a second opinion. Will send you any information I can and ask him to get on Web-site. Took me 9 months to book in . I have had OT for about 4 years and I am now off Clonazepan as it nearly drove me crazy. Depression, was always anxious and so drugged. Took 2 500mg at night and was increased to 3 as my walking got worse. For me this drug was terrible - slept for 11-13hours a day and was continually tired.
Now on Neurontin 3 300mg per day - 1 with each meal and it suits me . Some days my walking is not very good but other days I feel and walk really well (with a walking stick)

Hope this helps you and will let you know of the outcome of the appointment.

You all hang in there and take care.

Will reply.

Ann
marian
Posts: 9
Joined: Fri Jul 24, 2009 8:47 pm

Re: DRUG CLONAZEPAM

Post by marian »

I was put on Clonazepam, as well as mirapex. At first the dose of Clonazepam was .5 mg. twice a day. I got so sleepy, and asked my neurologist about changing the timing. I am now on .25 mg four times a day. I got sidetracked and forgot the two midday doses, and had a bad episode, so I assume it is helping.
I'm also taking physiotherapy twice a week for stamina, strength, and balance. The first two are much better, but balance is still poor. However it is improving slowly.

Bea
MaureenB
Posts: 59
Joined: Mon Mar 22, 2010 4:24 am
Location: Southport UK

Re: DRUG CLONAZEPAM

Post by MaureenB »

Hi everybody
I saw my Neurologist yesterday ,and we have decided to give Rivotril (clonazepam) another try at a slightly higher dose and try to build any benifits without the drowse side effects.he will view Mikes youtube films with interest, (Thanks Mike ) are you receiving box office fees Ha HA .
I am also going to take some Vitamin D and magnessium .I received no benifits regarding O T with Vitaimin B injections last year.

I wonder Gardenwoman if you attends the same Neuro unit as me?,as we are both in the north west of england.

Kindest regards Maureen
going for walk its a lovely sunny day.
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