Hi,
I was diagnosed three months ago with OT after more than 10 years of symptoms which were dismissed as either exaggeration or simply put into the "too hard basket". I would be interested to hear from others who have multiple "morbidities" (isn't that a GREAT word?). I have had a couple of slight strokes and after brain scans was told that there had been no permanent damage. I had surgery for a totally blocked carotid artery in 2004 and a heart attack which led to a stent implant in 2005. I also have peripheral neuropathy.
When I was tested for OT, my tremors were rapid and were visible and I also froze after resting between tests and then trying to move into position to resume. All this was grist for the mill for the researchers who filmed and recorded the session.
My neurologist confirmed that I had severe tremors and also peripheral neuropathy. He believed that my strokes HAD damaged a part of my brain called the (pedunculupontine) which controls movement and balance. I started on Lyrica and am now taking 150mg twice a day. My improvement was immediate and amazed my husband and friends and of course the researchers too. I can now stand to cook, hang the washing on the line, stop to speak to friends in the street, do the housework without assistance, and most surprising of all, play golf. Also the severe neuropathic pain has almost disappeared. I can't really walk a straight line - I swerve from side to side - but I feel I have been given a new lease on life.
My neurologist, Dr Rob Wilcox, and other colleagues are doing research into OT, specifically freezing - when does it occur? is it similar to the freezing of Parkinson's? etc.
I am thrilled to bits. I would like to hear from others with OT who are taking Lyrica and who also have other complaints. It is hard to know where one condition ends and the other starts and what effect medication for one could have on the other. I would also like to hear of any side effects they have experienced.
Cheers for now
Vallis
Multiple symptoms
Moderator: gloria
Re: Multiple symptoms
Hi Vallis
I have had OT for over 20+ years. I was put on 'Clanazepam' - just 1 x .5mg tablet a day which worked wonders from day one of taking it. As time went by my problem came back as my body got used to the drug, so I had to take 2 .5mg tablets. Once agian this helped but then the OT started to become worse again. This went on over the years until I was on this site and read that a Lady was taking 'Lyrica' (it is called Pregabalin in the UK) and it had really helped her. When I went to see my Specialist I asked if I could try it. He agreed and I started by taking a low dose .50mg twice a day (plus my Clonazepam). Thus didn't help me very much so I had to build up gradually until I was taking 250mg twice a day. I must say it did help my OT but I had very nasty side effects. I ached in every muscle in my body and eventually my GP suggested I reduce the dose gradually - which I did and the aches and pain started to dissapear. I got down to 50mg twice a day and am still taking them with my Clonazepam now but my OT is not under control as it was on the higher dose. I had to weigh up which was worse - the aches and pains or the OT. I decided to stay on the low dose because it does help a little as I have a husband who suffers Parkinsons and Dementia and I am his carer.
Anyway good luck with the 'lyrica' and I hope it works for you with no side effects.
Best wishes
Daf (uk)
I have had OT for over 20+ years. I was put on 'Clanazepam' - just 1 x .5mg tablet a day which worked wonders from day one of taking it. As time went by my problem came back as my body got used to the drug, so I had to take 2 .5mg tablets. Once agian this helped but then the OT started to become worse again. This went on over the years until I was on this site and read that a Lady was taking 'Lyrica' (it is called Pregabalin in the UK) and it had really helped her. When I went to see my Specialist I asked if I could try it. He agreed and I started by taking a low dose .50mg twice a day (plus my Clonazepam). Thus didn't help me very much so I had to build up gradually until I was taking 250mg twice a day. I must say it did help my OT but I had very nasty side effects. I ached in every muscle in my body and eventually my GP suggested I reduce the dose gradually - which I did and the aches and pain started to dissapear. I got down to 50mg twice a day and am still taking them with my Clonazepam now but my OT is not under control as it was on the higher dose. I had to weigh up which was worse - the aches and pains or the OT. I decided to stay on the low dose because it does help a little as I have a husband who suffers Parkinsons and Dementia and I am his carer.
Anyway good luck with the 'lyrica' and I hope it works for you with no side effects.
Best wishes
Daf (uk)
Re: Multiple symptoms
Hi Vallis,
I am so glad you are feeling better. I would be very interested to know about your symptoms and also the neuropathy. I have something else going on in addition to the OT. I was doing some searching today and came across neuropathy and it got my attention. It seems like there is a wide range of symptoms it could case including issues with balance.
Have a great day.
Kate
I am so glad you are feeling better. I would be very interested to know about your symptoms and also the neuropathy. I have something else going on in addition to the OT. I was doing some searching today and came across neuropathy and it got my attention. It seems like there is a wide range of symptoms it could case including issues with balance.
Have a great day.
Kate
-
aussiepommy
- Posts: 27
- Joined: Tue Oct 14, 2008 11:15 pm
- Location: Adelaide Australia
Re: Multiple symptoms
The Lyrica has been interesting for me.
So wonderful yet frustrating if that can be possible.
I would say my OT was very severe. I couldn't stand just like everyone here for more than a few minutes but i couldnt walk due to fatigue either. Eventually i was having tremor when i walked and falls were becoming more of a problem. I only had three falls but that is three too many. Anyway, i was put on lyrica and i am on the maximum dose of 4x 75mg a day. Can you believe that i have even jogged and hiked but i still can't stand still. It has given me my energy back but my tremor is so bad when standing still. One thing that concerns me is that i had to increase fairly quickly as it seems to wear off. I don't know what it will be like when it wears off now.
Regarding the multiple symptoms, i wonder if the walking and fatigue was over lapping with something else? The Lyrica, as has been brought to my attention by a dear friend, has brought me back to "normal" OT. I did get assesed by my GP as having essential tremor also but the neurologist didnt agree i don't think.
Just thought i'd share my story incase it helps any?
So wonderful yet frustrating if that can be possible.
I would say my OT was very severe. I couldn't stand just like everyone here for more than a few minutes but i couldnt walk due to fatigue either. Eventually i was having tremor when i walked and falls were becoming more of a problem. I only had three falls but that is three too many. Anyway, i was put on lyrica and i am on the maximum dose of 4x 75mg a day. Can you believe that i have even jogged and hiked but i still can't stand still. It has given me my energy back but my tremor is so bad when standing still. One thing that concerns me is that i had to increase fairly quickly as it seems to wear off. I don't know what it will be like when it wears off now.
Regarding the multiple symptoms, i wonder if the walking and fatigue was over lapping with something else? The Lyrica, as has been brought to my attention by a dear friend, has brought me back to "normal" OT. I did get assesed by my GP as having essential tremor also but the neurologist didnt agree i don't think.
Just thought i'd share my story incase it helps any?