It took a while before I was diagnosed with OT. Most doctors I went to looked at me like I had 3 heads when I described my symptoms. I finally took the bull by the horns and chose my own neurologist. I was shocked and surprised when after describing my symptoms he told me that I had an essential tremor in my limbs. He treated me up to a certain point and then referred me to another neurologist (a noted doctor in the field of movement disorders and Parkinson's disease) who has been treating me for the last 10 years. I have tried many different kinds of meds, in combination with Clonazepam, but nothing seems to give me any relief. I stay on the Clonazepam because if I don't take it, I wouldn't be able to stand at all. My condition seems to be getting worse. I can't shop at the malls without having to sit every few minutes. I can't navigate through crowds, so I tend not to be in a position where there isn't enough room for me to walk (social events, etc.) Can't walk up or down stairs that don't have rails. It has really become a debilitating disease (although my doctor says its not; he says its an inconvenience). I'd like to see him say it's an inconvenience if he suffered the way I and many others do. A year ago in December my daughter was married and I did not look forward to the receiving line after the ceremony. I had a chair put behind me so that I could stand for a few seconds and then sitdown to relieve the discomfort. Needless to say, it was not a pleasant situation. And it's very hard to explain your disability to another person. I'm going to be seeing the doctor in June and I'll be speaking to him about this drug I've been reading about in this forum (Neurontin). I'm really surprised that there are so many people who actually know what I'm feeling. It's depressing, embarassing and when I'm walking the hall at my job, I try to avoid speaking with friends because I can't stand for more than a few seconds. It's just like a description I just read; you curl your toes hoping that they will grip the ground and hold you steady, but that doesn't work. For me, it also puts lots of stress on my lower back because I'm working against gravity, trying to hold myself up. I'm happy to learn about this form; but not happy to hear that there are so many of us who suffer with the same ailment. I will be back to the forum in June to let you know what combination the doctor puts me on.
I'm considering changing doctors, but at this point have no idea who I should go to. This doctor is an eminent physician in movement disorders and although I did have faith in him, he does not have much to say but that it will not get any better and because this is a familial disease, my children could inherit from me. Not such a great thing for your children to inherit.
Thanks for letting me air out my feelings.
Kaylie
Meds for orthostatic tremor
Moderator: gloria
Hi Kaylie
As I read your message I could really understand your frustration at not being heard by people. I was fortunate enough to get referred to a Neurologist who specialises in tremors. After a lot of trial and error I'm now on a cocktail of medication with very few side affects and can stand for several minutes now rather than about 12-30 seconds. It depends on what medication side affects you're prepared to put up with versus reductioin in symptoms. My cocktail exists of Propranolol (a beta blocker)20mg 4times a day, Gabapentin (Neurontin) 100mg 3times a day and then Clonazapam as a rescue medication only - .25mg as needed.
I understand what it's like to avoid social activities and the difficulties of the workplace - especially when we look so normal when walking. Hang in there. All the best for your appointment with your neurologist in June.Isn't it great to find a forum to express how things are, and for others to understand?
regards Jenn
As I read your message I could really understand your frustration at not being heard by people. I was fortunate enough to get referred to a Neurologist who specialises in tremors. After a lot of trial and error I'm now on a cocktail of medication with very few side affects and can stand for several minutes now rather than about 12-30 seconds. It depends on what medication side affects you're prepared to put up with versus reductioin in symptoms. My cocktail exists of Propranolol (a beta blocker)20mg 4times a day, Gabapentin (Neurontin) 100mg 3times a day and then Clonazapam as a rescue medication only - .25mg as needed.
I understand what it's like to avoid social activities and the difficulties of the workplace - especially when we look so normal when walking. Hang in there. All the best for your appointment with your neurologist in June.Isn't it great to find a forum to express how things are, and for others to understand?
regards Jenn
Hi Kaylie,
I'm so sorry to hear about your OT experiences - but if it's any comfort it all sounds so familiar! I can relate to all the symptoms you describe - and the frustration and embarrassment that goes with it. I am not on any regular drug treatment (although I was on Neurontin for a while - it's certainly worth a try as it seems to help many people), but I do take Propranalol as and when I need it to ease the anxiety prior to those awkward social situations you describe. It doesn't actually relieve the tremor as such, but it slows the heartbeat and lowers blood pressure and helps to calm the situation!
One positive thing I wanted to point out to you, was that although essential tremor is a familial disease, as far as we know orthostatic tremor is not. Therefore, if what you have is OT (and it certainly sounds like it), you need not fear passing it on to your children. Good news!
I do hope you find a successful combination of drugs to help you - as well as discovering more of those coping strategies we're all working on.
Keep fighting!
Best wishes
Lynda
I'm so sorry to hear about your OT experiences - but if it's any comfort it all sounds so familiar! I can relate to all the symptoms you describe - and the frustration and embarrassment that goes with it. I am not on any regular drug treatment (although I was on Neurontin for a while - it's certainly worth a try as it seems to help many people), but I do take Propranalol as and when I need it to ease the anxiety prior to those awkward social situations you describe. It doesn't actually relieve the tremor as such, but it slows the heartbeat and lowers blood pressure and helps to calm the situation!
One positive thing I wanted to point out to you, was that although essential tremor is a familial disease, as far as we know orthostatic tremor is not. Therefore, if what you have is OT (and it certainly sounds like it), you need not fear passing it on to your children. Good news!
I do hope you find a successful combination of drugs to help you - as well as discovering more of those coping strategies we're all working on.
Keep fighting!
Best wishes
Lynda
Thanks to both of you for your words of encouragement. I'm not going to let this "thing" get the best of me. But, it's hard not to let it get to you. It's always with you. It scares me when I see those electric scooters that handicapped people often use here in the States. I picture myself in one. Some of the stores here in the US have electric carts, but I refuse to get into one. If I can't stand I'll find somewhere to sit.
Does anyone feel that the problem we all are suffering from is debilitating more than it is an inconvenience? I'm so angry with my doctor for having said that "its just an inconvenience". I wouldn't wish this on my worst enemy.
Best to all
Kaylie
Does anyone feel that the problem we all are suffering from is debilitating more than it is an inconvenience? I'm so angry with my doctor for having said that "its just an inconvenience". I wouldn't wish this on my worst enemy.
Best to all
Kaylie
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Chris
- Posts: 91
- Joined: Sun Dec 26, 2004 2:28 pm
- Location: Okanagan Valley, British Columbia, Canada
Meds for OT
Hi Kaylie
Nice to hear from you. I too share in your frustration both with Doctors recognizing my condition as more that an inconvenience and dealing with everyday life. I am only on Clonazapam .20 mg a day and will probably be having it upped soon. I tried Gabapentin (400 mg) 3 times a day as well but with not much successs so I decided to wean myself of that one.
I can stand for a few minutes and sometimes even a bit longer but I find I get agitated and my legs start to really hurt if I can't lean or sit. It can be very frustrating in social situations but I am learning to deal with it.
I now tell people I have to sit and sometimes if I know I have to stand in a line or whatever I bring a small stool. When I go to the big box stores I now use the power carts and I don't care what people think. I can now shop and think instead of grabbing the first thing and getting out. I now enjoy shopping again and I never shop alone anymore. My husband or grown children help me get things. I do avoid some events I should attend but I am slowly getting used to things.
Hang in there and good luck with your appointments. Life is definitely worth living and enjoying any way we can. Even my grandchildren are getting used to seeing Grandma working in her garden sitting on a stool and are great at helping me. I am slowly making my gardens easier for me to look after with my trusty stool or little cart.
Nice to talk to you and keep in contact and let us know how you are making out. There are a lot of us who feel like you do so you are not alone.
All the best
Chris
Nice to hear from you. I too share in your frustration both with Doctors recognizing my condition as more that an inconvenience and dealing with everyday life. I am only on Clonazapam .20 mg a day and will probably be having it upped soon. I tried Gabapentin (400 mg) 3 times a day as well but with not much successs so I decided to wean myself of that one.
I can stand for a few minutes and sometimes even a bit longer but I find I get agitated and my legs start to really hurt if I can't lean or sit. It can be very frustrating in social situations but I am learning to deal with it.
I now tell people I have to sit and sometimes if I know I have to stand in a line or whatever I bring a small stool. When I go to the big box stores I now use the power carts and I don't care what people think. I can now shop and think instead of grabbing the first thing and getting out. I now enjoy shopping again and I never shop alone anymore. My husband or grown children help me get things. I do avoid some events I should attend but I am slowly getting used to things.
Hang in there and good luck with your appointments. Life is definitely worth living and enjoying any way we can. Even my grandchildren are getting used to seeing Grandma working in her garden sitting on a stool and are great at helping me. I am slowly making my gardens easier for me to look after with my trusty stool or little cart.
Nice to talk to you and keep in contact and let us know how you are making out. There are a lot of us who feel like you do so you are not alone.
All the best
Chris
Hi ! everyone:
I thought I would jump into the mix of the discussion Kaylie, Jenn,Lynda & Chris are having about medications. It is extremely difficult to find out what medication and dosage is the best for us because most doctors have not had the feed back from enough patients to have this information. I will try to bring everyone up to date about some things I have learned from the information I have gathered from responses from people and doctors over the past 5 years plus personal experimentation on myself. Some OT people are using Clonazepam but my drug of choice became Neurontin/Gabapentin, (Gabapentin is the generic form of Neurontin .) Recently there has been some positive research about the use of Gabapentin and OT. Also there is the fact that doctors have been prescribing Gabapentin for many other uses for years and this is another plus. I have not had any side affects and have been told it is a rather beign drug. I believe that all of us reach a point in time when our lives with OT become so compromised that we need the help of medication. This was a very difficult decision for me but I knew I was losing my independence and socially I was living with the unexplainable. I have been comfortable with my choice and I have learned to work with the extra time it gives me before” meltdown “ starts. The main problem remains the proper dosage. Many people do not increase to the needed dosage to give them a marked difference thus it is not a fair trial. I have been doing 1100 mg 3 X per day( early morning, mid-day and night) however, I have decided to add an additional 300 mg around 4:00 pm because I feel that my average day is very active and my legs are starting to tighten up.
Your OT partner, Gloria
I thought I would jump into the mix of the discussion Kaylie, Jenn,Lynda & Chris are having about medications. It is extremely difficult to find out what medication and dosage is the best for us because most doctors have not had the feed back from enough patients to have this information. I will try to bring everyone up to date about some things I have learned from the information I have gathered from responses from people and doctors over the past 5 years plus personal experimentation on myself. Some OT people are using Clonazepam but my drug of choice became Neurontin/Gabapentin, (Gabapentin is the generic form of Neurontin .) Recently there has been some positive research about the use of Gabapentin and OT. Also there is the fact that doctors have been prescribing Gabapentin for many other uses for years and this is another plus. I have not had any side affects and have been told it is a rather beign drug. I believe that all of us reach a point in time when our lives with OT become so compromised that we need the help of medication. This was a very difficult decision for me but I knew I was losing my independence and socially I was living with the unexplainable. I have been comfortable with my choice and I have learned to work with the extra time it gives me before” meltdown “ starts. The main problem remains the proper dosage. Many people do not increase to the needed dosage to give them a marked difference thus it is not a fair trial. I have been doing 1100 mg 3 X per day( early morning, mid-day and night) however, I have decided to add an additional 300 mg around 4:00 pm because I feel that my average day is very active and my legs are starting to tighten up.
Your OT partner, Gloria
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Chris
- Posts: 91
- Joined: Sun Dec 26, 2004 2:28 pm
- Location: Okanagan Valley, British Columbia, Canada
Meds for OT
Hi Gloria
Nice to hear from you. Gabapentin is a great drug for many things as you have mentioned. No wonder it didn't work for me - my dosage was not strong enough. I was taking it for another reason at the time ( they thought I had a nerve problem in my back - which I didn't) and found in conjunction with my clonazapam ( apparently I am on a low dose of that too) that the two drugs combined really do not help my OT. I weaned myself of Gabapentin myself but will definitely talk to my doctor next week about weaning off Clonazapam completely and trying a stronger dose of Gabapentin. My tremors are getting worse lately and really annoying. I am taking other anti-inflammatory drugs for some sort of problem with my calf which the doctor's can't figure out what is wrong after 3 months My Rhumatologist suspects a Baker's Cyst which is draining into my calf - whatever it causes me quite a lot of pain when walking .
How long did it take you to adjust to that strong a dose of Gabapentin and does it make you drowsy. I seem to have that problem a lot!
I am willing to try anything to lessen the tremors so I can lead a more normal life especially this time of year in my garden.
Thanks for your input.
Chris
Nice to hear from you. Gabapentin is a great drug for many things as you have mentioned. No wonder it didn't work for me - my dosage was not strong enough. I was taking it for another reason at the time ( they thought I had a nerve problem in my back - which I didn't) and found in conjunction with my clonazapam ( apparently I am on a low dose of that too) that the two drugs combined really do not help my OT. I weaned myself of Gabapentin myself but will definitely talk to my doctor next week about weaning off Clonazapam completely and trying a stronger dose of Gabapentin. My tremors are getting worse lately and really annoying. I am taking other anti-inflammatory drugs for some sort of problem with my calf which the doctor's can't figure out what is wrong after 3 months My Rhumatologist suspects a Baker's Cyst which is draining into my calf - whatever it causes me quite a lot of pain when walking .
How long did it take you to adjust to that strong a dose of Gabapentin and does it make you drowsy. I seem to have that problem a lot!
I am willing to try anything to lessen the tremors so I can lead a more normal life especially this time of year in my garden.
Thanks for your input.
Chris
OT Meds
Just wanted to update all of you. I had my doctor's appointment and in addition to the Clonazapam I have been on for the last 10 years (4 mg daily), he now wants to try Clonodine (a patch worn for 7 days which distributes 0.1 mg of CLonodine each day for seven days. Although I haven't started it yet, I'm not very hopeful about it since he has tried many other drugs (in conjunction with Clonazapam) which have not helped in the least.
I believe my OT has worsened. I cannot attend any social functions unless I am assured that there will be a place for me to sit. I used to be able to walk long distances; now it seems that the distances have become shorter. The determination to stay on my feet has begun to place a severe strain on my lower back. As far as food shopping is concerned, I cannot go through the entire store. I must plan what I acually need, and then try to stand on the cashier's line to pay for them. I don't go food shopping anymore by myself; my husband is usually with me and he's the one standing on line waiting to pay for our purchases. This OT has literally affected the entire quality of my life. I know that those of you affected by OT can sympathize with me since you are all having the same experiences.
At my last doctor's visit, he decided to combine the 4 mg of CLonazapam that I take daily with Clonodine. The are patches which are used for one week that distribute 0.1 mg daily of Clonodine. I'm going to start tomorrow; however I don't have much confidence since most other meds he has tried have not given me any relief. I wonder if anyone out there has had any experence with this drug?
My doctor has also suggested the use of a cane which comes equipped with a fold down seat. Needless to say, I was not very receptive to his suggestion. Is any one out there using such a device and does it help you?
Frankly speaking, I'm really at my wits end, thinking about consulting other physicians. I live in the NY/NJ area and I know that there must be other experts in OT out there but I guess I need to do some research.
Fortunately, although I am an administrator, most of the time I am sitting at my job, although at times I do need to stand and speak to others. The worse part is seeing someone you know in the corridors and they start up a conversation with you. I try to cut them off and be polite about it, but its not always that easy.
Looking forward to receiving your replies.
Kaylie
I believe my OT has worsened. I cannot attend any social functions unless I am assured that there will be a place for me to sit. I used to be able to walk long distances; now it seems that the distances have become shorter. The determination to stay on my feet has begun to place a severe strain on my lower back. As far as food shopping is concerned, I cannot go through the entire store. I must plan what I acually need, and then try to stand on the cashier's line to pay for them. I don't go food shopping anymore by myself; my husband is usually with me and he's the one standing on line waiting to pay for our purchases. This OT has literally affected the entire quality of my life. I know that those of you affected by OT can sympathize with me since you are all having the same experiences.
At my last doctor's visit, he decided to combine the 4 mg of CLonazapam that I take daily with Clonodine. The are patches which are used for one week that distribute 0.1 mg daily of Clonodine. I'm going to start tomorrow; however I don't have much confidence since most other meds he has tried have not given me any relief. I wonder if anyone out there has had any experence with this drug?
My doctor has also suggested the use of a cane which comes equipped with a fold down seat. Needless to say, I was not very receptive to his suggestion. Is any one out there using such a device and does it help you?
Frankly speaking, I'm really at my wits end, thinking about consulting other physicians. I live in the NY/NJ area and I know that there must be other experts in OT out there but I guess I need to do some research.
Fortunately, although I am an administrator, most of the time I am sitting at my job, although at times I do need to stand and speak to others. The worse part is seeing someone you know in the corridors and they start up a conversation with you. I try to cut them off and be polite about it, but its not always that easy.
Looking forward to receiving your replies.
Kaylie
-
Chris
- Posts: 91
- Joined: Sun Dec 26, 2004 2:28 pm
- Location: Okanagan Valley, British Columbia, Canada
Meds for OT
Hi Kaylie
Nice to hear from you. Good luck with your new meds and keep us posted on your progress.
I was up to 4 mg of clonzapam daily and awhile ago my doctor decided to toally wean me off it before he puts me on gabapentin. I am still in the weaning off process and I guess clonazapam was helping somewhat because I notice my tremors worsen each week.
I havejust returned from a short trip to visit some of my family and found shopping with my Mum & sister (which I loved to do in the past) very tiring and frustrating as walking slowly and trying to look at things was almost impossible. The only fun time was in a store that provided a powered cart which I now love to use.
I found it quite interesting because I think they really didn't realize how bad my tremor was until this weekend. Thank God my husband is really understanding and helpful and is usually there to lean on, etc.
I find even leaning on a shopping cart doen't really help much as the tremors seems to then go up to my arms as well. Oh well!
I will continue on and try the Gabapentin and see what happens and will keep you all posted. I have not heard of Clonodine but will ask my Dr. about it
Hang in there and let us all know how you are doing!
Chris
Nice to hear from you. Good luck with your new meds and keep us posted on your progress.
I was up to 4 mg of clonzapam daily and awhile ago my doctor decided to toally wean me off it before he puts me on gabapentin. I am still in the weaning off process and I guess clonazapam was helping somewhat because I notice my tremors worsen each week.
I havejust returned from a short trip to visit some of my family and found shopping with my Mum & sister (which I loved to do in the past) very tiring and frustrating as walking slowly and trying to look at things was almost impossible. The only fun time was in a store that provided a powered cart which I now love to use.
I found it quite interesting because I think they really didn't realize how bad my tremor was until this weekend. Thank God my husband is really understanding and helpful and is usually there to lean on, etc.
I find even leaning on a shopping cart doen't really help much as the tremors seems to then go up to my arms as well. Oh well!
I will continue on and try the Gabapentin and see what happens and will keep you all posted. I have not heard of Clonodine but will ask my Dr. about it
Hang in there and let us all know how you are doing!
Chris
new drug ideas
Hi, I'm new to this site and finally doing something proactive, i.e. research on my condition. I take propranalol (about 80 mg. throughout the day) and primidone (nights only). I always had low blood pressure and I get the feeling that with these drugs lowering the pressure even more I can hardly find the energy to get around. The OT is only partially under control but can't take any higher doses of these meds and stay conscious! Any ideas of useful drugs that don't have this effect of lowering the blood pressure? Any nondrowsey stuff out there that works? Donna
I have had Ot for 10 years and diagnosed at Mayo in MN 2 years ago. I have tried the sinemet, klonopin, neurontin prescribed by Mayo. They all made the tremors worse.
I had to see a neurologist in town for a neck problem about 6 months ago. He said to try ativan (lorazepam). It really helps the shakiness. I know it can be addictive but my family doctor said I needed it too. I usally try to limit the intake to times when I need to be out and about or get the house work done. I almost feel normal when I take it. Has anyone else tried ativan (lorazepam)?
DM
I had to see a neurologist in town for a neck problem about 6 months ago. He said to try ativan (lorazepam). It really helps the shakiness. I know it can be addictive but my family doctor said I needed it too. I usally try to limit the intake to times when I need to be out and about or get the house work done. I almost feel normal when I take it. Has anyone else tried ativan (lorazepam)?
DM
my doctor/neuro has tried me on inderal which did not help, w inderal and gabapentin together it was a little better, but not completely relieved, now they want to wean me off inderal to see if gabapentin alone will work,so far it seems every time i cut down on the inderal it gets worse, ,so at this point its hard to know if i need to increase the inderal or a differant combination is needed. its very frustrating and hard to know. they also recently put me on a low dose of the clonazopam(sp).5. its very frustrating and hard to know which way to go. 
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stella
ot and meds
HI EVERYONE,
well i have been on 1200 mg of gabapentin now for a month.
I had very high blood pressure and finally my Dr. has been able to treat that problem.
I do feel better now but cannot shop with my walker to sit on every few minutes.
HOwever i now can walk from my car to my house without holding
holding on to my husband and walk around my house better.
MY biggest surprise is i now can slow dance again.
That is a big big change for me.
However i dont know if its due to the gabapentin or because my blood pressure is now so low.
I dont want to keep taking pills if they are not doing anything.
I cannot stand for any more athan a minute before these tremors kick in.
Whic is a bit longer than before.
It is a puzzel for me.
I am come to grips with this condition and have learned to live with it.
Any feed back on this.
well i have been on 1200 mg of gabapentin now for a month.
I had very high blood pressure and finally my Dr. has been able to treat that problem.
I do feel better now but cannot shop with my walker to sit on every few minutes.
HOwever i now can walk from my car to my house without holding
holding on to my husband and walk around my house better.
MY biggest surprise is i now can slow dance again.
That is a big big change for me.
However i dont know if its due to the gabapentin or because my blood pressure is now so low.
I dont want to keep taking pills if they are not doing anything.
I cannot stand for any more athan a minute before these tremors kick in.
Whic is a bit longer than before.
It is a puzzel for me.
I am come to grips with this condition and have learned to live with it.
Any feed back on this.
Keep your chin up!
Hello Kaylie,
I can completely sympathize with you and your struggles. I have had OT for about 8 years now but did not rreceive a diagnosis till 3 1/2 years ago. At the time I was diagnosed, I was told the disease is progressive and the only treatment is medication that will constantly be needing adjustments. My neurologist told me to look into getting a cane. I was 37 at that time and had 3 elementary aged kids. Nothing is more discouraging than to think you have no control over the situation and that things will get worse. All I could think of were activities I would be limited on: parent/teacher conferences, grocery shopping, checking out a library book, trying on clothes, teaching Sunday School, and well, the list goes on. I could only stand a few seconds and was completely whipped afterward. I was put on Neurontin - it did help - but after one month I decided to try my own way. I really didn't like the idea of my next 40 years being medicated.
I am happy to say that I am completely medication free and my OT has improved by 90%. The only time I have trouble is when I am in a speaking situation and my adreneline is rushing. 2 weeks ago I spoke at a televised news conference adressing the mayor of Las Vegas and the county commissioners. I shook like a leaf and had to sit down after about 5 minutes (which is good because I was concise and didn't waste my words!) Anyway, my point is there are many things you can try - don't get discouraged -- know there is hope of getting out of this regardless of what the doctors say. I can stand at almost any social occasion for a good half hour or more with nothing more than achiness in my legs. I rarely get the tremors.
I have no way of knowing how you or anyone else will be affected by choosing a natural approach. This is just what worked for me: chemical detox (I had too many heavy metals in my muscles tissues) which included lots of blue-green algae, cilantro, blueberries, and organic green vegetables; exercise and hot baths. At first the exercise (walking) was very difficult because my legs and buttocks would throb terribly for an hour or so afterward. But it lessoned over time. I also watch my caffeine and sugar intake and stry to stick with organic meats.
I'm not suggesting you stop your medication. Just be open to the idea that OT isn't always progressive. I would like to come back to this forum in about a year and report it is completely gone!
Still trying,
Cheryl
I can completely sympathize with you and your struggles. I have had OT for about 8 years now but did not rreceive a diagnosis till 3 1/2 years ago. At the time I was diagnosed, I was told the disease is progressive and the only treatment is medication that will constantly be needing adjustments. My neurologist told me to look into getting a cane. I was 37 at that time and had 3 elementary aged kids. Nothing is more discouraging than to think you have no control over the situation and that things will get worse. All I could think of were activities I would be limited on: parent/teacher conferences, grocery shopping, checking out a library book, trying on clothes, teaching Sunday School, and well, the list goes on. I could only stand a few seconds and was completely whipped afterward. I was put on Neurontin - it did help - but after one month I decided to try my own way. I really didn't like the idea of my next 40 years being medicated.
I am happy to say that I am completely medication free and my OT has improved by 90%. The only time I have trouble is when I am in a speaking situation and my adreneline is rushing. 2 weeks ago I spoke at a televised news conference adressing the mayor of Las Vegas and the county commissioners. I shook like a leaf and had to sit down after about 5 minutes (which is good because I was concise and didn't waste my words!) Anyway, my point is there are many things you can try - don't get discouraged -- know there is hope of getting out of this regardless of what the doctors say. I can stand at almost any social occasion for a good half hour or more with nothing more than achiness in my legs. I rarely get the tremors.
I have no way of knowing how you or anyone else will be affected by choosing a natural approach. This is just what worked for me: chemical detox (I had too many heavy metals in my muscles tissues) which included lots of blue-green algae, cilantro, blueberries, and organic green vegetables; exercise and hot baths. At first the exercise (walking) was very difficult because my legs and buttocks would throb terribly for an hour or so afterward. But it lessoned over time. I also watch my caffeine and sugar intake and stry to stick with organic meats.
I'm not suggesting you stop your medication. Just be open to the idea that OT isn't always progressive. I would like to come back to this forum in about a year and report it is completely gone!
Still trying,
Cheryl
Hi, All from Virginia: Went to neurologist today, he wants me to try a new med, it is Lyrica 75mg. twice a day. I am to try them for four weeks and report back. I will also let you all know. I have been on nerontin for several years. I contonue to play golf once a week and exercise at the YMCA three times a week. Continue to find a lot of coping things to help with daily living etc showering, house work, gardening and going to special events. Keep on keeping on. Vurginia