Surveys of medications/treatments and discussion

Moderator: gloria

OT poll - medication that HAS OFFERED SOME RELIEF after 2 months

benzodiazepines (Clonazepam)
25
25%
beta-blockers
5
5%
gabapentin (Neurontin)
21
21%
Levodopa
4
4%
nalproic Acid (Depakote)
1
1%
pregabalin (Lyrica)
2
2%
primidone (Mysoline)
9
9%
acupunture or other non-drug treatment
3
3%
no medications because of side effects
15
15%
no medications because they didn’t help
14
14%
#2518
HELP OTHER OT MEMBERS BY ADDING YOUR INFORMATION TO THE POLL, LOGIN AND CLICK ON THE APPROPRIATE ITEMS ABOVE, THEN VIEW THE RESULTS OF ALL PARTICIPANTS. THANKS!

Please limit your answer to medication that you have been taking more than 2 months and has presented some relief.

If there are any treatments or medications that you have found to be helpful and are not in the poll/survey please post a reply with that information.

Thank you

**THIS POLL IS FOR GENERAL INFORMATION, AND ANY DECISION TO START OR STOP USING MEDICATION CAN ONLY BE MADE BY YOUR PHYSICIAN

** this is not a scientific poll and it's purpose is for general information only

** even though you need to be logged in to post your answer the results are anonymous.
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#2521
Hi
I have been taking gabapentin for about 4 years.
I feel it helps me take the edge of my tremors.
I have not had any after effects from this drug.
I take about 1200mg a day or more if i feel the need.

Stella Ryan
#2525
Hello!

I do take Klonopin (clonazepam); 2 mg. daily. I was told to cut them in half and take 1/2 tablet at 8:00 a.m., 12:00 noon, 4:00 p.m. and 8:00 p.m.

I don't find it is as helpful as it was when I first started taking it in 2003. I have not increased the dosage but have tried to decrease it. When I do decrease it; or forget to take it at the proper time, I find my ability to stand and walk is more compromised. Soooo, even though I don't think it is helping; it must to some extent.

I also have Essential Tremors now; but do not find Klonopin has any affect on them.

I will go back and take the second part of the survey; which may ask other medications I have tried. Just in case it does not, I have tried: Mysoline, Topamax, Neurontin, Mirapex, Lyrica, Sinemet and Flexeril, and was unable to tolerate any of them.

Betty
#2530
I had been on Gabapentin for 6 months and it seemed to have helped..I went off of it about 2 months ago to try ropinirole to see if that would help me more than the gabapentin. Since I went off the gabapentin my trembling in legs and arms have become much worse. I am just starting the ropinirole so I do not know now if that is going to help.

Conclusion is I think that the Gabapentin seemed to help. I was on 1200mg /day.
#2541
Greetings! I have been medicating and doctoring for this affliction for 18-19 years and, therefore, have tried just about everything in the book. I am currently taking gabapentin, 900 mg. 3 x day, and propranolol, 80 mg. 3 x day. In the past we have tried Klonopin, Sinemet, Zoloft, Mysoline, Neptazane, Clonazepan, Neurontin, Depacote, Topomax, Remeron, Primadone, Celebex, etc. I had all kinds of reactions to the different medications, and obviously none of them helped much. My current meds are helping some. I guess! My tremors are severe. If, however, as mentioned above, I skip my meds, my tremors are even more severe. My neurologist says hang in there. New medications come along frequently.
#2939
I've been taking gabapentin for about 8 years. I take 900 mg. (300 mg. 3 times per day), at which level the tremors are tolerable. I had taken as much as 3600 mg. daily (increasing the amount gradually over time), which helped a good deal, but, not wanting to take so much medication, I gradually reduced the daily dosage to 900 mg. per day. Gabapentin has been tested and in use (for various problems) for many years and has a good track record. It appears to be relatively safe. I've also not experienced any side effects and, I believe, it's not addictive.
#3011
Good news for a change! As you may remember from previous posts, I also have had daily migraines as well as OT to the extent of using a wheelchair 100% outside of my home. Yesterday I walked almost a mile using a trekking pole and casually holding hands with my boyfriend!

So, here's the catch up story to that miraculous state that I hope will stay constant.

I'm still on gabapentin 300 x 2. I don't know for sure that it helps so at some point I may try getting off of it completely.

I finally got a headache specialist (my third one) that seems to have an answer for the migraines. I'm having rebound headaches, which basically means I'm taking pain meds too many days of the month and then the meds start causing headaches. That is not news to me, I've heard that every time I go, but what IS news is how to stop them and get clear. So I took a graduated 5-day dose of prednisone pills to just handle the headaches enough to get me through the first days of no pain meds, it was very rough going. I made it through though and that's what counts.

In the meantime my doctor also started me on Zonisamide for migraine prevention. It's a "cousin" to Topamax, seizure medications which so many OT meds are. Zonisamide is known for being more easily tolerated and more effective than Topamax which I had tried and swore I would never get close to it again. I believe that is the miracle for me. Probably getting the headache meds out of my system helps, but Zonisamide is also used for Essential Tremor and Parkinson's. I'm supposed to build up to 100 mg daily. I'm just barely into week 2, so I'm just at 50 right now. I feel a little druggy, but I take it at night, so I sleep through it, and am noticing very little side effects so far.

OT symptoms are decreasing daily! I still curl my toes to hang on to the floor.
The urgency to sit has gone from 9 (intense) to 1 (minimal)
Tremors are very light, I barely even notice them during just normal activities like loading the dishwasher etc. which I couldn't even do without my wheelchair a couple of weeks ago.
I haven't tried to stand just to time myself, but I find myself standing in the middle of a room a putting a shirt on without even realizing I'm standing without leaning or anything.

Every day I'm getting stronger and more sure of myself. At this point I'm thinking I may be able to dance again, at least to some degree. A far cry from where I was.

I do believe it's the Zonisamide that's making the real difference because the OT symptoms got noticeably worse starting in about April 2011. I've been having rebound headaches, now that I understand them better, since around 2001.

I hope this brings some of you at least one more medication to hope for.
#3012
Hi Marlana,

So good to read you are having success with this new medication. I do hope it continues and your migraines will soon be a thing of the past.

So happy to hear you are able to stand longer and without severe tremors ~ wonderful news!

Do keep us posted on your progress; looking forward to your next report.

Betty
#3222
Hi Maraina...I'm thrilled that you are making good progress and actually have the dream of dancing again. :D I've been on Gabapentin 300x3 for about five years with fairly good results. I would like to follow your posts in hopes that the new med will offer help for all of us. We need good news!

Cheers,
Bev
#3226
Update time. My migraine medication, Zonisamide is working well, so I've gone from 15-20 headaches a month to 2-5. Most of my headaches were actually rebound headaches from taking too much headache medicine, too often. Once I finally figured this out and found a way to get off, and now take medicine that does not cause the rebound issue Indomethacin, I'm way better with the headaches.
Unfortunately, the couple of weeks of walking and dreaming of dancing didn't stay with me. I don't know what that was about, but it certainly is a mystery. I'm wondering if anyone else has had days or weeks where your OT symptoms suddenly got better?
I have since gone off completely of Gabapentin while I was clearing my system of all medications, so I could try to get a clearer picture of whether or not the Gabapentin was helping the OT symptoms. I now believe that it does help. So I'm back on it again 300x2 for now. I may go up to 300x3 once I get settled again on this dose.
So, I do think my symptoms are somewhat better, overall, than they were while I had all the headache meds in my system. I don't use my wheelchair in the house now at all. I do use it outside, but that has a little to do with my being legally blind. Walking slow is harder, as you know, so being blind often means slowing down for things I am unsure about visually, which is not a good mix with the OT, so a wheelchair is easier.
I do have one place I go once a week that is not wheelchair accessible and has steps. So, I can manage it with my boyfriend's help. We have it down to a science now, and everyone around knows not to get in our way when we are walking and to keep chairs open and all of that. The building is actually an old house, so it works ok, a bit stressful, but I can manage, I could not have done that a few months ago at all.
The interesting thing I notice about the Gabapentin is that it seems to help with the tremors, but not with the spacial balance thing, the part where I need to touch something to know where my body is. That's my next quest when I visit my neurologist is to focus on a medication that is known for dealing with that particular issue, if there is such a medication.
So, onward we go. :)
#3227
Hi Marlana,

So good to hear you are doing so much better; that's always a plus. I can relate to migrains, but haven't had them in years. I am so happy yours seem to be lessening.

I understand Gabapentin is the medication most find is the one which seems to help best. I have tried it a couple of times, but have been unable to tolerate it, however, I may try again.

Regarding the couple of weeks when your OT was so much better; I haven't experienced that....only in my dreams. When I am sleeping and dream, I am always the way I was before OT. It is wonderful to be active and do all the things I always did before OT. I look forward to "dream" time.

Perhaps someone else will be able to address the sensation of balance and space. I can only relate to being in the dark and have no sense of space and could easily fall. Could that be it?

Keep up that positive attitude and let us know how things are going.

Betty
#4545
I was diagnosed several months ago, after nearly twenty years of tremors, three neurologists, brain scans, physical therapy, and injections which did nothing to change my condition. I finally found a neurologist that understood OT and prescribed Clonazapam. I tried it for a month with no results. He then put me on Carbidopa/Levidopa, starting out at a very small dose and gradually increasing it for the last six weeks. I had a few bouts of dizziness and nausea, and thought it was the medication, but he said if it was not intolerable to keep taking it and increased it again. Yesterday, a few hours after taking the new increased dose, I had a surprising and sudden halt to all tremors, and was able to move around at a near normal stance. After a few hours, the tremors return, but after another dose they subside again! I am ecstatic and hopeful that we have had a breakthrough, and want to tell everyone NOT to give up. Work with your doctor. There are many different medications you can try, you just have to be patient and find the one that works for you. This forum has given me hope and comfort in knowing I am not alone in this struggle, and wish the best for all of you.
Donna
Perampanel

Hi Peggy. Take a look at this web page and see w[…]

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