DRUG CLONAZEPAM

[Cara]

I have been taking clonazepam for about a month. .5 mg twice a day. it is helping a lot with pain but not doing much for enabling me to stand much longer. maybe one or 2 min. however it is also helping me with stress and I am sleeping much better at night. the first couple of days it made me too sleepy so I just took one in the afternoon and worked up to taking the 2 again. this is my first time taking any meds. I had been getting by with just ibuprofen which I still need for backaches. I also tried gabapentin but in just 3 weeks I gained 9 lbs so I went off that. I am going to stick with this for now. I don't have ins. and can't afford to keep paying for doctor visits to keep trying different meds. anybody on these boards live in Arkansas?
Cara

[daphne]

Hello Cara, my name is Daphne and I have been taking Clonazipam for over 20 years. I take 4 x .5mg in the morning and I found this was not helping. I started originaly on 1 x .5mg and it worked wonders. I was able to stand with no problem. Gradually I had to take extra as one was not working anymore. I got up to 4 x .5mg in the morning but it realy didn't work anymore. I did try Gabapentin but had bad side effects. I then had a message from Ann on the forum and she said she was taking Lyrica so I asked my GP if I could try this. He gave me 100mg and I had to build up gradually - and I am now taking 200mg in the morning (with my Clonazepam) and 200mg in the evening.
I find this has improved my standing a little.( A little is better than nothing) I am better if I am not under any stress. (This is some times very diffficult as I look after my Husband who has Parkinson's and Dementia) Don't know if helps but hope it does.

By the way I live in Oxford, UK
Best wishes and take care, Daphne

[joycerayburn]

Dear Daphne
It has been awhile since i have posted but just need to hear from someone. My condition seems to be getting worse. I deal with it as good as I can but the frustration is growing for me. It took so long to even be diagnozed finally at Vanderbilt in Nashville. Dealing with the condition for about 18 years. I am now almost 73 years old. been very active and continue to do as i can in the best way I can. If it were not for a wonderful husband I would have an even greater problem. At this time i am dealing with a mass behind my eye that thank God was not malignant but doctor is using meds to get rid of it and I am dealing with thoses side effect. Very bad double vision. I was thinking maybe that is having an effect on my orto static tremors. Blessings are many in the midst of it all but love hearing from someone who knows these terrible feelings and experiences we have due to this condition. Bless you all

[MaureenB]

Hi
has anybody else suffered from..Bad Dreams... whilst taking Clonazepam ?

Maureen

[Terese]

Hi, This is my first time on this site. I've had OT for 7 years now and mostly have learned to live with it. When I went to my doctor with my symptoms, he had no idea what it might be, but thankfully referred me to a neurologist. As soon as I described my symptoms she knew exactly what it was. She asked if I could actually SEE the shakes and I had to admit I hadn't ever looked. So I stood up and within a minute they started, and we could see them. She started me on .5 mg Clonazapam 3 times a day. It helped a lot in my opinion. After about 6 months, I asked her if I could increase my dosage and she upped me to 1 mg 3 times a day. I was on that for a year or two. It did make me tired and sleepy at first, but that passed. It didn't eliminate my symptoms altogether, and I decided to try another drug. I don't remember what it was but I had to build up to it slowly and had very strong side effects at first, which I was warned about. I decided to hang in there but after a month it was obvious that the side effects were getting worse. I felt I was on a narcotic and even stopped driving my car. I went back to the Clonazapam 1 mg 3xdaily and continued for a year or two. Then I asked if I could take it 4 x a day (which I had been doing on my own on severe days) and she said go ahead. I also kept my regular dr. informed. Recently my doctor put me on a blood pressure medication which had several side effects which I was expecting (tiredness, shortness of breath) but several I had not expected. My OT worsened and I started having chest pains and pain in both arms. (I had just had a complete cardio workup so wasn't worried about heart problems.) My doctor changed the medication and most symptoms lessened or went away. I still had the feeling of a tight belt around my chest and back and arm pain, but usually after exercise. One day I mistakenly took 5 Clonazapam and had a terrible reaction. The chest and arm thing was constant, and it was worse if I laid down. I almost went to emergency after a whole night of the pain...but decided not to for 2 reasons. I am visiting my daughter in Wales and was afraid of insurance issues and I had had this pain before. So I went through the night the next day took none of my medications at all. The pain came and went for the next few days, finally tapering off entirely. One unexpected side effect of not taking pills for one day... my OT disappeared for the entire day!! Of course it came back the next day, but I cut myself back down to 3 Clonazapam a day and am back to normal (in my way). When I get back to the States, I have an appointment in Sacramento (California) with a neurologist who specializes in movement. I plan to get the names of the drugs that I had a bad reaction to and see what this doctor's opinion is. I feel I lead a fairly normal life, comparatively. Yes, I do have to lean or sit when I shake, but that does work. I have not trouble walking (brisk is better), driving, etc. Since being here in the UK I've started unloading the dishwasher and washer and dryer sitting down, which was so frustrating for me before. Sorry this has been such a long post, but it's my first and I've read everyone else's. Thank you for talking to me and for listening to me (in our way). Terese

[SBMum]

my neurologist finally admitted that I had OT rather than essential tremor which he's been telling me I had for 5 years now. after diagnosing the ET 5 years ago, he tried me on about 10 different meds all of which had such horrendous side effects that I couldn't take them. I ended up just taking 10 mg valium at bedtime and that's helped until this past month. I went in for my 3 month check up and after discussing OT and his looking it up on the Mayo Clinic site, he said, "oh that sounds exactly like what you've been describing"!! duh! anyhow, he decided that based on that article and a couple of others, I should try clonazepam. he gave me .5 mg and said I would build up. Well, Friday night I took that .5 and on Saturday felt like I was going to die -- my tremors were 50 times worse, I was nauseated, dizzy, had a huge headache and shook all over (not just my legs) - also was so drowsy I couldn't keep awake. On Saturday night I took 1/4 of the .5 mg - Sunday almost as bad. Since then, my tremors are unstoppable (I stopped the clonazepam and went back to valium) and I still feel horrid. Has anyone else had a reaction like that to clonazepam? I haven't even bothered to call my neurologist - I think I maybe need a new one. If anyone in the Santa Barbara area has someone to recommend, I'd love hearing from you.

I'd also like to hear from anyone who has found anything that works - this exacerbation of my OT symptoms is going to put an end to my being able to work if I can't control it.

thanks
Lynne

[Harriet]

Hi Lynne,

I have been taking gabapentin for many years and find that it helps moderately. With it I have occasional, very welcome, moments of steadiness. I take 200 mg at a time--3 or 4 times a day--quite a low dose. The strange thing about it is that I feel most steady after my second dose of 200 mg--sometimes dramatically better. But this effect wears off after 2 or 3 hours and then I am trembly again even after taking 1 or 2 more doses. Maybe the problem is that I take the last dosages later in the day when I am more tired and it is getting darker. I have a much harder time when it is dark.

Anyhow I am grateful for the moments of relief and greater steadiness and am still looking for ways to increase the wonderful steady feelings.

Harriet

[SBMum]

thanks, Harriet, neurontin was one of the drugs I tried way back - I don't remember what it did for the tremors which weren't as bad at the time but it gave me other side effects like heart palpitations and shortness of breath - but maybe it's worth a try again.
Lynne

[daphne]

Hi every one, it has been some time since I came online - so here is an update. I am now taking 6 .5 mg tabs Clanazepam in

the morning as the lower dose was't giving me the same relief plus my Dr in the UK has done a lot of research and I am now taking Pregabaline also. 3 capsules in the morning (with the Clonazepam) and 2 Capsules Pregabaline in the evening.

I find this is working very well for me and I am coping very well

Take care all you folks and hope this helps
Best wishes, Daphne