The Orthostatic Tremor Forum (archive)

Hi to all OT friends. I want to report that I have had some wonderful success the past 4 days. I have suffered OT for 15 years and tried all the meds possible including gabaspentin, I was on 1600mg of gabaspentin about 2 years ago and felt little relief. The past 6 month my tremors were soooo bad I could hardly stand at all and life was very difficult.

I had been in contact with Gloria privately and she encouraged me to retry gabaspentin but go to the dose she is taking which is 3200mg. So I saw the doctor and got a script, in the meantime I started taking SAMe a homeopathic tablet which is a real pick me up, and noticed my tremors were not as bad, plus my mental state really improved. I really feel there is something in SAMe that is good for us, but what it is I do not know. My script arrived last Friday and started on three tablets the first day (300mg tablets) and increased them where today I am on 1800mg.

This is the results, I travelled on a tram standing for about 5 blocks and held onto a pole, I shopped with my stool but didn't have to use it, I can move around my kitchen much more easily and do not have to sit on the floor to get things from the fridge, and now make coffee without having to sit. So the results for me are just wonderful at present, I may stay on 1800mg for a number of weeks to see if the gabaspentin holds if not will start to increase it to a higher dose. I am taking a generic brand called Genrx and for my Aussie OT friends the cheapest place to purchase it is Pharmacy Direct in NSW online.

I wanted to report this, as reading the forum so many OT's are starting to really struggle like I was, but the past few days for me have just been so good I am on cloud nine. I only hope that it lasts. I will keep everybody informed of my progress over the next few weeks. Lorna.

I am really happy to hear of your success Lorna. It has really encouraged and inspired me. I have just finished weaning off Clonazapam this week and have a Doctor's appointment tomorrow. He wanted to see how bad my tremors were without medications. They are defintely worse now than ever before and am finding my daily life greatly impacted. I was great to get details of your dosage which gives me some idea of where to start. I was once on Gabapentin with Clonazapam and I didn 't see much difference but it was only 1200mg of Gabapentin at that time.
Hopefully you will continue with your success so keep us informed and I will also let you know how I am doing once I get up to full strength.
I have been suffering from extreme vertigo for the past month so am not sure when I will actually start on Gab. as I want to clear up other problems first.
Hang in there!
All the best,
Chris

Query to Chris, my actual clear onset of OT seemed to occur after a severe bout in inner ear inflamation that had me reeling with vertigo for several weeks. Do you have any indication that the two conditions are related? My first go round with the doctors kept missing the OT because they blamed my lack of balance on the ear business and physical therapy has been a wash out. Donna

Reply to Donna: Hi there! Interesting to hear about your vertigo problems. I am not sure if they are related but it could be a possibility. My Dr. does not think so. I have had various vertigo problems for about 12 years now. I sometimes get extremely bad attacks which can last only a few days or weeks & months. Ater a few days I can usually handle the vertigo and know what not to do. This particular attack I have now has gone on for about 7 weeks & is the worst I have ever had. It is very frustrating! I went for over a year with no vertigo which is making this one all the more worse.
I always thought I had vertigo and for years assumed my tremor was part of the vertigo. I used to feel so spaced out a lot. Then I noticed my tremor when I wasn't having any vertigo symptons and decided a few years ago that my balance problem was always there and not part of the vertigo. My specialist does not think they are related but who knows - maybe they are!!
The specialist (ear, nose & throat) I saw the other day suspects this particular attack may be caused by a sinus infection so she is treating me with antibiotics. The nausea has sonewhat been alleviated which is a good thing but I am still very dizzy.
I am going to start on Gabapentin soon but am waiting until my anti B's are almost finished as mixing medications does not always sit well with my stomach. I will let you know how I am doing.
Hang in there and maybe one day they can find a definite cause for this annoying tremor.
All the best,
Chris

Hello to you all my OT friends, well just reporting in after recommencing Gabapentin. Now taking 2700 mg and going strong, much improved with my medication, and can stand much better than I had been able too. I have found that 8 hours between the doses is too long and start to tremor, so now taking my three daily doses at 6 hour intervals, as the tremors start to breakthrough after 6-7 hours. regards Lorna.

Hi Lorna,

I'm so happy to hear of your success. I also take Neurontin for my O.T. and it is definitely helpful. In your post of Aug. 8 you mentioned that you had been taking SAM-e. What was the dose?

Thanks and all the best to you.

Anita

Hello All,

Just to clarify for anyone who may not know - Gabapentin is the generic for Neurontin. (I used to take Neurontin, now take Gabapentin.)

Regards,
Anita

hello everyone....just an update to let you know how I am doing. In the beginning I was doing exceedingly well. I slowly increased my dose of Gabapentin to 3200 mg daily. What a difference...I could stand for quite a bit longer and even though I could still feel the tremor it was manageable and my hips and legs weren't painful as before after a long bout of trying to stand. Then the side effects started. First thing I noticed was a quite a substantial weight gain fairly quickly after reaching full dose. My clothes suddenly were uncomfortably tight especially around the waist. I normally am overweight and is an ongoing battle but to this extreme almost scared me. I also started retaining a lot of fluid (which I normally never do) especially in my ankles, stomach & face. Some mornings I could hardly open my eyes as my face felt so swollen.
My Doctor immediately put my on diuretics as I was also experiencing difficulty breathing at times...not good. They helped somewhat but not to a very great degree....I was forced to start reducing my dose of Gabapentin. Dropping down to 2100 mg per day I did notice some difference which I thought might even out. As were heading out on an extended holiday(3-4 weeks) I decided to stay at that dose for the time being. After a few weeks of feeling not too great I decided to cut back again slowly on the pills. It wasn't until I was down to 1200 mg that I felt a lot better. Of course by now my tremor had gotten a lot worse again....bummer!!
I am now on no medication at all and physically feel a lot better....I have already lost some weight and am getting more exercise again. My ankles are no longer swollen so I am able to walk and exercise comfortably again. The only downside is my tremor is very bad and I cannot stand for any length of time at all but am trying to make the best of it. I am slowing adapting my house so I can do my chores...they just take me longer now and my husband has to help a lot which he usually does quite willingly. I carry my trusty stool around with me a lot now and use powered carts when shopping in the big box stores. They really are great. I get some funny looks sometime as to why I need it but when people see me standing or struggling to use a debit machine without hanging on they usually understand. Besides who cares!!!!!
Maybe one day I will try this drug again or some other one if someone can ever figure out why we wll have this annoying condition and find a cure. It would be nice to think that could happen one day.
Hope I didn't bore you all with these details but I thought some of you might be interested in my experience with Gabapentin. I also have tried Clonazapam before for over a years and didn't see much advantage to taking it as my tremor still was quite noticeable during that time and as my husband put it "it was somewhat of a mood and personality altering drug for me".
Hang in there everyone and I look forward to hearing from you in this forum .
Chris .

anita wrote:Hello All,

Just to clarify for anyone who may not know - Gabapentin is the generic for Neurontin. (I used to take Neurontin, now take Gabapentin.)

Regards,
Anita

Hi All, Just reporting about the dose of SAMe, its Homoeopathic Medicine,
"SAMe" 25 mg, 25 mcg Folic Acid,25mg Vitamin B6,25mcg Vitamin B12. and the trade name I use is Pretorius. I take one tablet 3 times a day. Hope this helps you Anita.

Thanks for your response, Lorna. I'm already taking B6, B12 and folic acid. So, I will add the SAM-e to my regimen.

Thanks again.

Anita

are you speaking of gabapatin??

Josephine,

I'm not sure who you are asking, but in an earlier message I referred to Gabapentin.

Regards,
Anita