The Orthostatic Tremor Forum (archive)

A month ago my neurologist, Dr.Geo. Plotkin in Tyler, Texas, started me on a new medication called Lyrics. IT HAS BEEN A MIRACLE FOR ME !!!!!I have had OT for 14 years and nothing else has ever helped me at all. I could barely walk or stand and was getting worse . I have been using a cane for several years.....He put me on one capsule (50mg) a week for one week and ask me to call him. It had not worked at the end of one week , so he told me to take one twice a day for a week but after the 4th day all of a sudden my strength returned to my legs. He now has me on one three times a day. I have not used my cane since that 4th day and am walking like I did before OT hit me. This had truly been a miracle and my friends and family just can't believe what has happened. I feel like I now have a new life. Please talk to your Dr. and have him do the same for you and I pray it will do the same for you. Harry O. Williams age 76

Harry, Do you mean Lyrica? My doctor at Baylor Medical Center in Houston just prescribed it for me. I started taking it two days ago. I have taken Neurontin for several years. It has helped, but I still have plenty of issues with tremors. You give me hope that this new drug will be even more beneficial! Maggie

Hi Harry

This is great news and gives us all hope! It's so good to hear of somebody having a real breakthrough in their treatment of OT.

I have looked on the Internet to find out a bit about Lyrica and I see that it is the drug Pregablin, used for epilepsy. I'm presuming, because of its name, that it is actually similar to Neurontin (or Gabapentin).

I would be interested to know a couple of things. Firstly have you previously tried Neurontin - and did it help at all? Secondly - I know it's early days - but have you noticed any side-effects with Lyrica?

I look forward to hearing from you.

And meanwhile - enjoy your new-found stability!

Lynda

So happy to hear that Lyrica is working for you.

My husband was just diagnosed and is taking 75mg 3 x a day and has improved immensely.

He has not had any side effects at all.

He was diagnosed at the Baylor Movement Disorder Clinic in Houston.

To help all of you in your research as to side effects, warnings, etc. here is their official website:

http://www.lyrica.com/

Rich

So very happy for you Harry that you also have found Lyrica works for you. I have been taking it for 14 months, thanks to a new neurologist. I take two 75mg mornings only and I also am coping better on Lyrica than Neurontin. But we must remember what works for some may not work for others. What I have got from Lyrica is the ability to stand a little longer, which is great, but the best for me is that the panic part with this condition has decreased We are just so lucky that this site is here for us and we can share with each other. kind regards to all Lorna.

Thank you so much for letting us all know about your wonderful news! I will remain hopeful that this drug Lyrica will help others to the same extent. I also hope you will keep us informed about your progress in the future regarding this and hopefully it continues to be positive.

I phoned the Neurologist who is doing research at the Mayo Clinic and referred him to your news on the website. I also mentioned that you had given the Neurologist's name in Texas and I said hopefully he could contact him regarding the results. He was very pleased to get my call and wanted to know if I would be trying the drug and when I replied that I would be, he asked me to let him know how I do with it.

I realize that we all have to be cautiously optomistic with something like this because it may not work for everyone but it was great to finally hear some positive news.

Daily, I am thankful for Gloria for starting this website so we can communicate with one another. I will keep you informed re any contact I have with the Mayo Clinic regarding this.

I'm a 41 year old male who has been diagnosed with POT, intentional tremor and obstructive sleep apnea. As these issues have developed over the past 4 years, I have also developed symptoms of ADD.

After reading about Lyrica on this forum, I convinced my doctor to prescribe it for my OT. I began seeing results after 4 days of taking 50 mg twice a day. The results have been amazing. The OT is mostly gone but the "side effects" are what have me the most excited.

The most striking side effect is that I am finally getting a good night's sleep! I have been struggling to get relief fromthe obstructive sleep apnea and use a CPAP machine every night. Despite the number of my events being somewhat controlled by the CPAP, I was getting no restorative value from my sleep. I still needed to nap several times a day and was in a constant mental fog. Since starting the Lyrica, I seem to be dreaming much more and am waking up refreshed for the first time in years. My intentional tremor has also improved drastically but I don't know if this is directly due to the medication or the improved sleep.

I am curious if there are others out there with OT AND obstructive sleep apnea.

Hopefully, this drug will provide relief to many more OT sufferers.

I am very grateful that this forum is available. I have my life back because you took the time to share your experiences!

Thank you!

Harry, I, too, would like to know if you tried Neurontin before trying Lyrica. If so, did you have any adverse side effects and if so, what were they?

I am very sensitive to all medications I have been given to try for my OT and have been unable to take any of them. I have not yet tried Lyrica; but would be willing to give it a try; however, I just read about it online and found it is mostly used for shingles and nerve pain.

I know there are MANY medications for a certain problem and are used for others as well; this must be one of them. I will be interested in hearing how you are doing after taking Lycria since February. I will try to check the "post" board more often.

Good luck and hopefully this will be the "magic bullet" for you!

Betty in Florida

I would like all OT people who are using Lyrica or have used it to give their evaluation of it. Updates from all of you would help our community very much. The pro and cons, how long you have used it, and the before and after of your OT symptoms etc. Whenever something has helped some of us this is one way we can get a good overview until there are more scientific studies. We are in a self-help arena and doing an excellent job.

Gloria

Greetings from Virginia. I have been on Lrica 150MG twice a day,easy to remember. No side effect although if I forget a dose I find my self getting anixious and shaky. My standing still has increase a little really pleased not getting worse. I have been on is about 8 months.
Still very appreciate to Gloria for starting OT Forum. I log on every time I'm on computor and feel I am not alone, others do understand what I go thru.
Keep On Keeping On!!!!!!!!

Wanted to let you know that I started on Lyrica on March 7/07 and gradually increased my dosage to 50mg in AM, 50 mg about 5PM and 25mg about 10PM.
I initially had increased to 50mg 3x daily but found I was quite unsteady when walking slowly so cut back to the 125mg per day as noted.
It is working extremely well, I am back to the level where I started with OT about 3 yrs. ago noticing some mild unsteadiness. Mornings are the best; usually later in the day I will notice it more but I would say it has been a BIG IMPROVEMENT. I had previously tried Clonazelpam and Primidone with not good results.

Hello to everyone!

It has been a while since I have posted; I was reading about the wonderful things happening for some of you taking Lyrica and I wanted to consult with my physician to see if it would be something I might take.

I am very sensitive to all medications and have been unable to tolerate anything prescribed. All meds most of you take with success, I have tried, and have been unable to tolerate them. The side effects have been terrible.

I have tried Mysoline, Topomax, Mirapex, Klonopin, Valium and Neutontin.The only two which gave even the slightest relief were Klonopin and Valium. Neither gave me the relief I have read others have gotten from some of the other meds.

So....I asked my physician if I might try Lyrica. He is very good about listening to me because he knows me so well.

Just as a side note: in the past, when he was trying different meds, I was afraid to try because I have had so many failures with severe side effects. We would have ~ as I would say ~ 'discussions ~ he would say they were 'arguments'! He got so upset with me on one occasion he got up and walked out of the room, and I thought ~ well, that's it ~ he is going to tell me to find another doctor! He has been my doctor for almost 20 years!

He soon returned to the room and we continued the 'discussion'. I did try whatever it was he wanted me to try ~ severe side effects once again; so we discontinued that one.

I told him I had read about Lyrica on Gloria's website and he told me he would give me a few samples to try; but didn't think I would be able to tolerate it because it is very similar to Neurontin. I told him I wanted to give it a try ~ maybe; just maybe, this would be the one.

He gave me the lowest dosage available ~ 25 mgs to be taken at bedtime. I started it on Tuesday, May 22, 2007. I was awakened in the night with a terrible headache; finally went back to sleep, but still had the headache when I got up. It was early because my head was hurting so badly. It got better by about 10:30 a.m.

I took it again Wednesday night, May 23rd; no headache, but Thursday morning didn't feel at all well. I was dizzy, shaky and felt weak, dull, my eyes were puffy, I was very nervous and really 'off balance'. I also had a hard time getting my eyes to focus. I had problems walking and getting around, so I sat most of the day. I was truly 'bouncing' off the walls ~ falling into the walls.

So....I knew, even after so few days, this is one more med I am not able to tolerate. My doctor had told me if I couldn't tolerate the Lyrica to go back to the Valium, which I did.

I am taking 10 mgs. of Valium in the a.m. and 10 mg. at bedtime. It helps just a little, but today seems to be an especially bad day. I know we all have good and bad days; but today is one of the worst I have had in a long, long time.

I am having great difficulty walking, I am staggering, falling into the walls, have very weak legs and my tremors are very severe ~ I am hoping things will be better tomorrow. "Tomorrow is another day" ~ right?

Well, I have written way too much, just trying to fill everyone in on how Lyrica affected me. For those of you who have been able to find SOMETHING which helps ~ I am thrilled for you and keep hoping I will one day find something to do the same for me.

I know I am getting worse, yet I hate to admit it. I rarely go out anymore because it is just too difficult for me. When my husband is going, I feel a bit more comfortable. I have him to help steady me.

I know this is not a very positive report, but it is MY reality. I keep hoping each day will be better ~ I never give up hoping.

Let me hear from any of you who might have tried any new meds with some degree of success. It is always so good to hear good reports from many of you.

We just keep trying and learning new ways of coping.....

Betty in Florida

Hi Everyone,
Well i have to say i know how you feel Betty. I too am getting worse.
THEse last few days i cant stady myself at all. Even hard with my walker.
Glad some of you are finding help with lyrica.
I dont have any bad effects with gabapentin but suddently it seems not to work much anymore.
I could barly get from my car to the house yesterday.
Sitting i am fine.
Think i will give my nurogolist a call if it stays this way.
Wondering how you are doing GLoria.
Tomorrow is another day better for us all i hope
Candyse

Hi all Lyrica users!

I am in the middle of trying Lyrica and weaning off Klonopin. So far, I have had no side effects and seem to be doing OK with this medicine. I'm taking 50mg at night, but switched to in the AM to make up for being only on 1/2 pill of Klonopin. It seems to be about the same in effects, and still feel a little sleepy. I'm going to ask to Dr. to increase the dose of Lyrica as I go to 1/4 a pill of Klonopin. I tried this with premidone and was shaking all over the place with being off Klonopin and 3 pills a day of premidone not doing the job. It's so hard to try a new medicine and wean off another, I just hate it! However, this time I have some hope the Lyrica might do a better job. With Klonopin I'd get so sleepy taking 2 pills to stop the shaking, I just stick with one pill in the AM. I will post everyone again when I'm completely off Klonopin and have the full effects of Lyrica.
I'm hoping to be able to stand longer before the shakes hit. I'm so thankful for this website, I would have never known about this medicine if I didn't read about it here.

Take care all,
Kathy/Florida