Your experiences with OT Medications

This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Your experiences with OT Medications

Post by gloria »

I received a very thoughtful letter from Dawn about updating the poll to include more choices for medications. It does present a problem trying to respond to a "yes or no" question about the results of OT medications. And, benefits from medications may change over time.

So, if you have a moment could you share your experiences with medications and whether they have helped you? Please remember that we are not doctors and the responses posted here are specific to the author of the message, your experiences may be different and in all situations any decisions concerning prescription medicines should always be made under the guidance of a physician.

Hopefully this discussion will yield a more complete view of how these medications affect OT symptoms.

best regards, Gloria
Virginia
Posts: 12
Joined: Sun Jan 18, 2004 10:56 pm
Location: Fairfield, Ohio

Medication

Post by Virginia »

From Virginia -Keep on keeping on.

I have been on Neurontin for about two years and tremors seem to be held status quo. No shorter on no longer. If I miss a dose I can sure tell it. Have experienced no side effect and Dr. will go along with what helps me. At first I was on some other anti tremor meds and had a lot of side effects. My doseage is 600mg three times a day. Along with medication I feel that exercising, water and fitlinxx. three tines a week helps to keep me moving. :!: 8)
Harriet
Posts: 24
Joined: Fri Apr 23, 2004 7:00 am
Location: New York

Medication

Post by Harriet »

Hi all,

I've been very appreciative of this web site for a long time; it's good--and amazing to me--to know that there are so many others experiencing the same strange and maddening symptoms that I am.

I've had OT for almost 30 years, but it's been only in the past 10 years that I knew what was wrong with me. Initially, being a social worker and very psychological minded, I assumed I was suffering from a panic disorder. In the course of exploring and getting help for that, I eventually developed a private practice in the treatment of anxiety and phobias. Initially some of my work involved going out with people who had agoraphobia and feared walking, bus and car travel etc. Shaky as I was I ventured forth with them, standing and reassuring them as they ventured away from their "safe" areas, standing in lines with them, riding buses and subways, etc. I can't imagine now how I managed to do it. Today I sit in the comfort of my office doing general psychotherapy and have not gone on a bus or train for many years.

Anyhow 10 years ago I saw Dr. Lucien Cote at Columbia Presbyterian Hospital and he said to me what on earth makes you think you have a psychological problem; this is a neurological problem called Orthostatic Tremor. That diagnosis changed my life. Aside from my work with patients, I had been avoiding people because I was mortified that I could not stand and talk to them and was constantly making excuses to run off when I met friends or neighbors outside of my home. Knowing what was wrong with me changed all of that dramatically; I could let people know of my "balance problem" and became more and more comfortable with that.

Dr. Cote perscribed neurontin and klonopin to be taken as needed. I take .5 mg of klonopin and 300 mg of neurontin when I have to go into a situation I could otherwise not manage--like social gatherings or going to the theatre and attempting to get into my seat. Strangely and happily this way of taking the medication has worked increasingly well. About 2 hours after I take it I feel quite steady, can walk in crowded places which I can't do without the medication, stand and talk with people for at least a brief period, stand in short lines, etc. etc. I wonder if anyone else takes medication in this way with this kind of effect.

I'm very interested in knowing what has worked for others. I'm also very interested in sharing some of the daily problems, nuisances, discomforts and challenges of our condition.

And, as I said before, I'm so glad of the existence of this web site!

Harriet
Lynda
Posts: 42
Joined: Sun Jan 25, 2004 10:37 am
Location: West Sussex, UK

Medication

Post by Lynda »

Hi Harriet

I have just read your posting on the website and want to say that I can really relate to your experience. I too spent years being told that my problem was completely psychological - the doctor put my tremor down to anxiety and panic attacks, which undoubtedly I was suffering from - but that wasn't the whole story! On discovering (15 years later) that I had a neurological disorder known as Orthostatic Tremor, I no longer experienced any serious symptoms of anxiety and felt a great freedom in being able to explain to people the reason for my inability to stand. Now I am a lot less embarrassed to sit down whilst others stand, or ask for a chair. Obviously I still face awkward moments in situations where people don't know about my condition - but it's so much easier to deal with now.

As for medication, I gave up on Neurontin as it didn't really seem to help me much, but I have recently started taking Propanolol as and when I need it. I realise that beta-blockers have very little effect (if any) on the tremor itself, but I do find that by slowing my heart rate the Propanolol keeps me relaxed in situations where I would otherwise be feeling tense, thus exacerbating the tremor. So when I'm faced with a party, wedding or other social event, I take an 80mg dose an hour before preparing to go out and I do find it helps. Has anyone else used beta-blockers in this way?

I do like the idea of not being on medication full-time (although if it worked successfully I probably wouldn't complain!) - just taking it when I need it most.

Best wishes to you all. Keep smiling.

Lynda
Harriet
Posts: 24
Joined: Fri Apr 23, 2004 7:00 am
Location: New York

Experience with OT medications

Post by Harriet »

Hi,

In response to your questions.First I want to say that I have (to my knowledge!) no medical problems other than OT. Secondly, in regard to medication, for many years I did what you are considering. I took one 300 mg neurontin and one .5 mg klonopin whenever I went somewhere where standing or walking slowly or dealing with stairs without railings etc. might be required. I found that this worked well--but also made me rather sleepy -- so that I could walk to my seat in a theatre but might sleep through the performance. I also began to notice that the day after I took the medication, my tremors seemed worse and I wondered if this might be a withdrawal reaction. Earlier on I had tried both neurontin and klonopin alone without any effect, but recently I tried neurontin alone and found that it helped. I spoke with my neurologist who suggested I take neurontin daily. I have been doing this for a couple of months and find to my surprise that it has been quite effective. With 300 mg I can shop, stand in short lines, do housework more comfortably etc. etc. The steadiness lasts for only a few hours and I have experimented with a second pill but have not found the second as helpful. I am also working with a physical therapist who is thoughtful and attentive to what I am experiencing and what my limits are so I am finding the therapy increases the feelings of steadiness the pills give me.

Anyhow it is encouraging to me after 30 years of needing walls and railings and chairs to steady myself and 30 years of avoiding encounters in public places that I finally seem on to something that seems to offer a bit of hope.

I must say that being part of this forum also gives me hope and encouragement. It is still amazing to me that there are so many of you going through exacly the same bizarre and exasperating difficulties and experiences as me.

Harriet
J

medications

Post by J »

Thank you Harriet for explaining about how you take your medications I will certainly give it a try. I am glad you are healthy otherwise. I am going to see neurologist this week so your information comes at a good time. I do hope that you can continue to have success in having some time that is almost tremor free. It made me laugh when you said you get into the pictures allright but may sleep through them! I must try to develop more of a sense of humour myself as I am a bit of a grump at the moment. well good luck to all.
Cheryl
Posts: 10
Joined: Fri Sep 24, 2004 5:59 pm

Medications I've tried

Post by Cheryl »

I have had OT for over 6 years although I wasn't diagnosed until 1 1/2 years ago. Initially, the neurologist I was seeing wanted to put me on Valium and gave me instructions to get a cane and, while on the medication, avoid driving. (Impossible with 3 small children.) After finding this web site and printing information from other OT sufferers, I saw a second neurologist who put me on Neurontin, gradually increasing the dosage to 600 mg three times a day. This helped tremendously but still I was not able to function at a normal capacity.

I am now off all prescription meds and take a natural supplement, a sugar, called Ambrotose. This has helped far more than the Neurontin. Interestingly, my husband has developed a neurological condition called CIDP where his legs are completely numb and weak and sometimes he feels it in his arms as well. He was hospitilized and was given mega doses of steroids and immunoglobulin. He is home now and able to work but on bad days he has a lot of pain and cramping in his legs and his left leg is always numb. He started taking large doses of Ambrotose and saw immediate improvement. This supplement is supposed to greatly help neurological disorders by improving cellular communication. My husband and I have both benefitted in a tremendous way.

I have also posted a topic - Fighting OT the Natural Way- describing the exercises and dietary changes I've added to my road to recovery. I'd be curious to know if anyone else has tried any of these remedies and what your results are.
Elisabeth S. Aschman
Posts: 1
Joined: Sat Jan 08, 2005 11:49 pm

ET,OT,& CIDP

Post by Elisabeth S. Aschman »

Dear Cheryl,
Your message is a great help to me. To help your husband I want to tell him about CIDP. I have had CIDP (Chronic Inflamatory Demylenizing Poly Peripheral Neuropathy) for 19 years, ET for 3 years at least, and was just diagnosed with OT. The CIDP was difficult for a couple of years until I was stablized on Prednizone (to suppress the inmmune system). I finally got down to 7.5mg. on alternate days. However osteoporsis becomes bad. 13 years after starting predizone, I fractured vertebrae just from the weight (114lbs) of my body.
I was put on Azathioprine (Imural) but after 2 years I stopped it because it affects the immune system to cause bad problems (read about it on the Internet. Yes, I even got Leukemia) Don't try it.
My new neurologist is trying to get me off prednizone with IVIG (immunoglobulin). I am concerned the harmful antibodies will take hold again without Prednizone. CIDP has not been bad to live with. I guess I walk funny, but it is not painful. My only problems now are shakey hands (ET) and bad balance (OT).
I have started neurontin for ET & OT. Previously I tried Propananolol (ended up in the hospital because Blood Pressure got so low), Mysoline (1/4 dose knocked me out for 6 hours), Clonazapam (I overdosed before it affected the ET). Here's to success with Neurontin.
I hope I have helped you. I think it helps to know about the medicines. I will look into Ambrotose immediately. Thanks, Betty A.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Medications

Post by gloria »

Dear Friends: Just wanted to bring your attention to a new study from the "Australian Neuromuscular Research Institute" that you will find by scrolling down on the Homepage to Articles, links etc. the study is headed: "Gabapentin can improve postural stability and quality of life in primary orthostatic tremor". It is a good read and very encourgaging to know that studies are being done specifically for OT. It is also comforting to know it is a positive one for those of us that are using Gabapentin. Personally I have been using it for 4 1/2 years without any adverse effects. Many people expect that medicine will restore us to a "normal capacity". I know of very FEW medication that can do that and this is the case for all maladies. I'm afraid of medications too and only take Gapapentin because I had reached a point in time where my symptoms were so bad that I knew that I needed help to maintain a level of coping and not compromise my independence any further. Your OT Partner, Gloria
J

OT Medications

Post by J »

Hello everyone, Just looking through website for any new postings. I have been taking the neurontin but find it makes me incredibly sleepy. I have to go out and about and can push through the tired feeling but if I take it at home I succomb to the tiredness and fall asleep on the lounge. I can see this is because at home I can relax whilst I must do the shopping etc. but i wonder about whether the side effects are worth the minimal help it gives me. I felt as if I could stand longer and told neurologist I could but he did the EMG and tremor still 15 he is accepting though and said if I feel better keep on the pills. I find that the neurontin causes me to feel "spaced out" and I really feel as if I am one step behind in comprehending what people are saying to me. I am hoping that i will be able to tolerate the pills soon. I do find that i cant combine the neurontin with the benzo as that combination completely knocks me out. I have to experiment and see which one works better on a prn regieme. I was travelling down to sydney on the train and took the two together and slept for the first 300kms! Well hope all are coping ok. I tell you I am fed up with this OT!!!!!!!!
Chris
Posts: 91
Joined: Sun Dec 26, 2004 2:28 pm
Location: Okanagan Valley, British Columbia, Canada

Medications, etc.

Post by Chris »

Hi
Hang in there! :) I find the medications make me very sleepy at times but during the day If I keep busy it isn't too bad. Coffee helps!!At night I sleep like a log. I have been having some severe leg problems as well so have been on pain pills as well. Haven't been able to work for over a month now. The doctors don't think this has anything to do with my OT but I am still having more tests.
My lower left leg has intense pain at times and I usually walk with a cane outside the home. This story is for another time tho so I just wanted to cheer you up a bit and let you know I am thinking of you. OT is the pits but I am trying to deal with it in all aspects of my life.
Take care
Chris
J

Medications

Post by J »

Dear Chris
Thanks for the cheerio call. I am sorry you are having leg pains. Have you pointed out to doc. how you tense all your lower spine in order to stay still. The muscles spasm and this causes pain down legs . Also has he realized that pain occurs in legs after continuously tensing calf muscles to stay still. I am sure if someone was told to extend their arm and keep in strong and still all day this would produce excrutiating pain in that arm. (If you get what I mean). I will try the coffee (I like short blacks) but was keeping away from it because I know caffeine makes people shake but i think you are right if these circumstances it makes sense to drink it. It is just so weird with the neurontin I actually have "really tiny mini sleeps" even whilst i am typing this to you. I really dont think I will continue on it. I get a bit worried exposing my feeling on the website in case of hackers but I will take the risk and say i am getting depressed and dont see its worth seeing some-one about it as its almost impossible for family and friends to understand this condition and they all say dont worry just concentrate and you will be able to stand still. I think its time to go watch tv, I am getting too D & M
J

medications

Post by J »

hello all, Just wanted to say that I am off the neurontin since last posting and feel so much better in my head. It definately did not agree with me and I have taken the 8 days to get off the two per day. My tremor is no worse or better but i feel "myself" again. I personally have come round to thinking that its best if something helps very little it is not worth the side effects. I am not going to take anything for the OT after i wean off the other tablets. I have read through quite a few comments and have noticed a fair few of you have decided to do the same. It has been a long process but it seems for me i feel best when I am not taking medications I will just have to wait for the day when they have a specific cure for OT rather than being a guinee pig. Thanks for all your insights.
Chris
Posts: 91
Joined: Sun Dec 26, 2004 2:28 pm
Location: Okanagan Valley, British Columbia, Canada

Medications`

Post by Chris »

Happy Spring!! Glad to here that you have weaned yourself off your medications. Sometimes feeling good in the head is better than having a tremor. I am sure you have learned to cope with your tremors as I have. I will be doing a similiar things as well. I am currently weaning off the Gabapentin (which really seems to to do nothing and later on maybe even the Clonasapam which I know doesn't help me at all. I will discuss this with my doctors first.
My leg pain is getting somewhat better. Most tests have been negative for other problems. I am on a short course of prednisone which has helped a bit ( not the tremors but the inflammation in my left leg.) I am seeing another specialist in a few weeks for this pain and then maybe I can get back to work and on with my life.
I have taken to gardening sitting on a stool and not being afraid to ask for help from my kids, grandchildren and friends. Our yard is finally coming together nicely and Spring is definitely on its way.
Hang in there and keep me informed of your progress. I am hoping my tremors will basically stay the same as yours will.
Take care and have a happy Easter!
Chris :)
Donna
Posts: 1
Joined: Sat Mar 26, 2005 3:48 pm

Re: Medications I've tried

Post by Donna »

.

I am now off all prescription meds and take a natural supplement, a sugar, called Ambrotose. This has helped far more than the Neurontin.

Fighting OT the Natural Way- describing the exercises and dietary changes I've added to my road to recovery. I'd be curious to know if anyone else has tried any of these remedies and what your results are.[/quote]

__________________

Hello. Hate to be back here, but....

I developte OT out of the blue in 2001 and then in 6/02 at the urging of my then neurologist I got implants out and the OT abated. Then a few months ago it came back.

My dr. has retired and Ihave not yet gone to one to get the very expensive neurontin,so was very interested in seeing this post. Where does one obtain Ambrotose? And how much is needed for OT relief?

Many thanks Gloria for this site and, now I see, a forum,as well.

Donna
Post Reply