Welcome Adrian,
Sorry to hear you too have OT, but you have found a wonderful site where you will get lots of encouragement, information and help ~ at least as much help as one can give.
When one is first diagnosed with OT, it seems we all feel we are the ONLY ones and feel quite lost until we find Gloria's wondereful website. You will find many friends here, who understand exactly what you are experiencing.
Try to keep a positive attitude and continue to ask questions and report things as you experience them. You will probably find others who have had some of the same experiences. I tried gabapentin, which seems to be the one medication which helps most; but I was unable to tolerate it. I take Klonopin, but it only takes the edge off just a bit.
One more thing....my husband and I have been to your beautiful country twice. We have traveled from coast to coast and north to Sleigo. Where in the west coast do you live? We would love to go again, but don't think that will happen at this point.
Stay in touch...
Betty
New to the forum? post a quick introduction
Moderator: gloria
-
Bruce Alfred Elder
- Posts: 1
- Joined: Tue Oct 25, 2011 11:15 pm
Re: New to the forum? post a quick introduction
Hello from Australia and thank you Gloria for setting up this very informative and supportive site which my neurologist suggested I have a look at.
I live at Woy Woy about 100 kms north of Sydney on Australia's east coast. I too am a sufferer of O.T. My condition came to notice some time in 2000 when I noticed shaking and weakening in my legs plus tremors in my hands. I was initially diagnosed with Benign Essential Tremor ( a common misdiagnosis I believe) and was prescribed many unsuccessful drugs - Necrontin, Mycelin, Gabapentin, to name a few. These drugs only made me ill with some very bad side effects. Following a second opinion from another neurologist I was correctly diagnosed with O.T. after a series of nerve and tremor tests.
I am currently taking the following medications, Clonazepam 0.5mgs - two tablets twice a day, Lyrica 75mgs once a.m. (only just commenced Lyrica). As a precaution I visited a third neurologist who confirmed the second neurologist's diagnosis and suggested I take a drug called Tegratol. I was then weaned off Clonazepam following which I experienced a more severe series of hand tremors, general weakness and nausea. I did not realise that the Clonazapam had been keeping my symptoms reasonably under control as the shaking and tremors were quite severe once I stopped it. I immediately scrapped Tegratol and went back on Clonazepam. After browsing through your O.T. website and reading all the stories from fellow sufferers I was absolutely amazed at the similarity in symptoms of O.T. I am forever looking for chairs to sit on and objects to lean on. I am unable to rake up leaves sweep paths without my legs shaking, associated with weakness and watering eyes. The only relief I get is either sitting or walking. My greatest feeling of well-being is when I'm driving my vehicle. I get very anxious and panicky when shopping or standing in line and this only worsens my condition. As you all know O.T.is a very uncomfortable and embarrassing condition and limits one activities enormously. Even simple things like carrying a drink without spilling the contents can be a worrying task. I read somewhere that a past head injury may be a cause of O.T. At the age of about ten years I suffered head injury when a large kitchen cabinet fell on me requiring many sutures to my head.
I am sixty-six years old and since taking Lyrica my condition has improved slightly (early days yet). I don't wish to turn fellow sufferers into alcoholics but I find that a couple of glasses of red wine help alleviate the symptoms - four or so allow me to complete household task without discomfort. Unfortunately one can't be a full time drunk and carry out other daily activities such as driving so it's only on rare occasions I resort to this solution. There is also the danger of the effects of alcohol on your prescribed medications.
Once again I would like to say thank you to Gloria and to all those who subscribe to this forum. It has been an eye-opener for me and as so many have said in their contributions it helps so much to know you are not alone. If anyone can be of some help as to encouraging results with medication I would like to hear about it.
Yours sincerely
Bruce
I live at Woy Woy about 100 kms north of Sydney on Australia's east coast. I too am a sufferer of O.T. My condition came to notice some time in 2000 when I noticed shaking and weakening in my legs plus tremors in my hands. I was initially diagnosed with Benign Essential Tremor ( a common misdiagnosis I believe) and was prescribed many unsuccessful drugs - Necrontin, Mycelin, Gabapentin, to name a few. These drugs only made me ill with some very bad side effects. Following a second opinion from another neurologist I was correctly diagnosed with O.T. after a series of nerve and tremor tests.
I am currently taking the following medications, Clonazepam 0.5mgs - two tablets twice a day, Lyrica 75mgs once a.m. (only just commenced Lyrica). As a precaution I visited a third neurologist who confirmed the second neurologist's diagnosis and suggested I take a drug called Tegratol. I was then weaned off Clonazepam following which I experienced a more severe series of hand tremors, general weakness and nausea. I did not realise that the Clonazapam had been keeping my symptoms reasonably under control as the shaking and tremors were quite severe once I stopped it. I immediately scrapped Tegratol and went back on Clonazepam. After browsing through your O.T. website and reading all the stories from fellow sufferers I was absolutely amazed at the similarity in symptoms of O.T. I am forever looking for chairs to sit on and objects to lean on. I am unable to rake up leaves sweep paths without my legs shaking, associated with weakness and watering eyes. The only relief I get is either sitting or walking. My greatest feeling of well-being is when I'm driving my vehicle. I get very anxious and panicky when shopping or standing in line and this only worsens my condition. As you all know O.T.is a very uncomfortable and embarrassing condition and limits one activities enormously. Even simple things like carrying a drink without spilling the contents can be a worrying task. I read somewhere that a past head injury may be a cause of O.T. At the age of about ten years I suffered head injury when a large kitchen cabinet fell on me requiring many sutures to my head.
I am sixty-six years old and since taking Lyrica my condition has improved slightly (early days yet). I don't wish to turn fellow sufferers into alcoholics but I find that a couple of glasses of red wine help alleviate the symptoms - four or so allow me to complete household task without discomfort. Unfortunately one can't be a full time drunk and carry out other daily activities such as driving so it's only on rare occasions I resort to this solution. There is also the danger of the effects of alcohol on your prescribed medications.
Once again I would like to say thank you to Gloria and to all those who subscribe to this forum. It has been an eye-opener for me and as so many have said in their contributions it helps so much to know you are not alone. If anyone can be of some help as to encouraging results with medication I would like to hear about it.
Yours sincerely
Bruce
Re: New to the forum? post a quick introduction
Hi Bruce,
Welcome! Glad you have found your way to the board. I think the more people speak up, the more information we give to each other and eventually the medical community as studies become more prominent.
It's so interesting how inconsistently medications seem to affect each of us even though our symptoms are so consistent. I wish it were simpler to get to the various helpful medications than it is.
Thanks for your input and I hope you do well on Lyrica.
Marlana
Welcome! Glad you have found your way to the board. I think the more people speak up, the more information we give to each other and eventually the medical community as studies become more prominent.
It's so interesting how inconsistently medications seem to affect each of us even though our symptoms are so consistent. I wish it were simpler to get to the various helpful medications than it is.
Thanks for your input and I hope you do well on Lyrica.
Marlana
Re: New to the forum? post a quick introduction
Hi Bruce
I love the name of your Home Woy Woy, I have a sister not far from Wollongong
pleased you have found Gloria's site. Its nice not to feel alone, especially like me when you have not met another person wit.P.O.T.
Regards Maureen
I love the name of your Home Woy Woy, I have a sister not far from Wollongong
pleased you have found Gloria's site. Its nice not to feel alone, especially like me when you have not met another person wit.P.O.T.
Regards Maureen
Re: New to the forum? post a quick introduction
hello i have registerd as nannykin ilive in ilfracombe devon england iwas first diagnosed about two years go when i saw a nurologist becaus they thought a brain tumour that i had removed in 19 94 was regrowing but they found that it was ot i am currently takeing primidone which helps to a certain extent but is no cure
Re: New to the forum? post a quick introduction
Nannykin, all of us who have been on the site have found that there is no cure. It is just something that is very hard to live with. It must have been very difficult to have surgery for a brain tumor and I can see why you thought it was a regrowth of the same. Thank heavens it wasn't. I hope the the medication helps with your OT.
Re: New to the forum? post a quick introduction
Hello everyone, my name is merribeth and I was diagnosed with OT after having a dorsal column stimulator placed for chronic regional pain syndrome of my right shoulder. I was diagnosed in april of 2010 but symptoms started 3 weeks after the stimulator was placed in oct of 2009. I have gone from being an RN and running up and down the halls of a hospital, for 10-12 hrs a night to barely being able to walk and distance now, I have fallen several times and has caused damage to my knees that will require surgery once my medicare kicks in april of 2012. I am 51 years old and used to be very active and now its an effort to do much of anything, simple things that used to be nothing exhaust me to no end. I am very limited as to what I can do, a simple shower I need to rest afterwards. My neurologist is very laid back and I have been tried on anti seizure meds, restless leg meds and a low dose of klonopin with no change in the tremor, the only thing that seems to stop or alleviate the tremors is cold water in a swimming pool, ther I can stand without the tremors or pain which I get alot from the tremors, my muscles seem to be very stiff and hurt bad to the point that bed is the only option. I can still drive but the problem is that when I get to where I am going that I can't walk or do anything once I am there. I have problems walking in the dark, I walk with a wide stance to keep my bearings and have to use a cane or the aid of someone else. sleep seems to be impossible I fall asleep for a few hrs and them I am awakened by full body jerks . the tremors are in my hands and arms also. Sometimes my family doesn't understand why I can't or won't do somethings, they just don't grasp the concept of how difficult it is to do. and they complain because I cry out in my sleep because of the pain it is like my nerves and muscles are fighting against each other. I have a strange buzz like feling to my legs that feels like when you put your tongue on a 9 volt battery. I also get a zapping sound in my head that comes and goes. I hate to go anywhere because people always seem to stare at me trying to get out of a seat or of the way that I walk. My tremors most of the time can't be seen visible but there are times when I have sat to long that they are very visible. My neurologist basically has throwen up his hands and says its something that your just going to have to live with, I know that but seems like there should be alittle relief somewhere. I am just not sure what to do anymore and now that winter is coming and I live in syracuse ny usa one of the snowest places to be I become more homebound because the feet of snow and ice makes it extremely difficult to move about. Just very sad about the whole situation and need help. Hopefully there will be something in new research coming soon. Just holding on the best I can for now.
Re: New to the forum? post a quick introduction
Hello Marribeth,
Welcome to the OT site; you will find lots of friends here who DO understand most of what you are going through.
I think most of us have tried a 'laundry list' of medications and the one which seems to help the most people is Neurontin. Have you tried that? You might ask your neurologist.
Regarding how exhausting it is to try to accomplish even the smallest task is something we all experience. It is very difficult to try to explain what you are feeling to your family or friends; because only one who has OT can understand how our muscles ache and become painful at times. Trying to stand and manintain our balance causes our muscles to tighten up and become rigid ~ at least that happens to me. It also causes cramping at times in the feet and legs which is also painful. That is when I/we must try to find a place to sit as quickly as possible.
You wrote: "I hate to go anywhere because people always seem to stare at me trying to get out of a seat or of the way that I walk."
I understand exactly what you are saying....I went to a luncheon today and had to walk across a room, tryng to balance, holding onto backs of chairs to get to a table. My tremors were VERY visable and I had several people ask me if I was okay. I told them I was, and found my seat.
A lady sitting across the table from me had been behind me and asked if I was okay; I gave the 'pat' answer..."yes, I'm fine!" Then I asked where I could get a glass of water and she told me it was across the room. I got up, stood for a few seconds and my tremors were so strong, holding onto the table it was shaking too. She looked at me and said, "Please, sit down and let me get your water for you; I don't think you would be able to get across the room without spilling it." I laughed, she smiled and I agreed she was right. I would probably end up back at the table with a glass with no water in it.
You wrote: "I have problems walking in the dark, I walk with a wide stance to keep my bearings.."
I also have problems walking in the dark and we keep a night light on in the bathroom so I can see and maintain my balance. I also hold onto the walls as I walk. You might try a night light.
As for a wide stance to keep your balance; I do the same, and feel many others do as well. I even must walk with my feet wider than I used to before OT. It isn't very 'lady-like' but we do what we must to cope with whatever situation is thrown our way ~ and there are many.
I found it interesting that your tremors become more visable after you have sat for a long period of time. Mine are better when sitting, and worse when standing or leaning.
I think your neurologist was a bit harsh with you; he must have missed the classes on 'compassion and kindness' when in medical school. Perhaps you should find a new neurologist; one who will listen to you and try to help. We know there is no 'magic pill' which will remove our tremors, but there are medications which do help some people.
It would be diffucult for you to get out in the winter in the snow; but do try to move about in your home to keep your muscles from tightening up. If you just sit on the floor (which is what I do) and stretch and do some excerises, you might find it will help.
Isn't there someone who could take you places so you don't become homebound? I know how sad you must feel because you haven't known about your OT very long, and it is hard to 'come to terms' with the news. But.....you have lots of friends here, and almost all of us have gone through
what you are feeling right now. Just try to do what you can; keep a positive attitude and look towards the future when someone WILL find something to help all of us.
Hold on.....we are here to listen to you anytime....
Betty
Welcome to the OT site; you will find lots of friends here who DO understand most of what you are going through.
I think most of us have tried a 'laundry list' of medications and the one which seems to help the most people is Neurontin. Have you tried that? You might ask your neurologist.
Regarding how exhausting it is to try to accomplish even the smallest task is something we all experience. It is very difficult to try to explain what you are feeling to your family or friends; because only one who has OT can understand how our muscles ache and become painful at times. Trying to stand and manintain our balance causes our muscles to tighten up and become rigid ~ at least that happens to me. It also causes cramping at times in the feet and legs which is also painful. That is when I/we must try to find a place to sit as quickly as possible.
You wrote: "I hate to go anywhere because people always seem to stare at me trying to get out of a seat or of the way that I walk."
I understand exactly what you are saying....I went to a luncheon today and had to walk across a room, tryng to balance, holding onto backs of chairs to get to a table. My tremors were VERY visable and I had several people ask me if I was okay. I told them I was, and found my seat.
A lady sitting across the table from me had been behind me and asked if I was okay; I gave the 'pat' answer..."yes, I'm fine!" Then I asked where I could get a glass of water and she told me it was across the room. I got up, stood for a few seconds and my tremors were so strong, holding onto the table it was shaking too. She looked at me and said, "Please, sit down and let me get your water for you; I don't think you would be able to get across the room without spilling it." I laughed, she smiled and I agreed she was right. I would probably end up back at the table with a glass with no water in it.
You wrote: "I have problems walking in the dark, I walk with a wide stance to keep my bearings.."
I also have problems walking in the dark and we keep a night light on in the bathroom so I can see and maintain my balance. I also hold onto the walls as I walk. You might try a night light.
As for a wide stance to keep your balance; I do the same, and feel many others do as well. I even must walk with my feet wider than I used to before OT. It isn't very 'lady-like' but we do what we must to cope with whatever situation is thrown our way ~ and there are many.
I found it interesting that your tremors become more visable after you have sat for a long period of time. Mine are better when sitting, and worse when standing or leaning.
I think your neurologist was a bit harsh with you; he must have missed the classes on 'compassion and kindness' when in medical school. Perhaps you should find a new neurologist; one who will listen to you and try to help. We know there is no 'magic pill' which will remove our tremors, but there are medications which do help some people.
It would be diffucult for you to get out in the winter in the snow; but do try to move about in your home to keep your muscles from tightening up. If you just sit on the floor (which is what I do) and stretch and do some excerises, you might find it will help.
Isn't there someone who could take you places so you don't become homebound? I know how sad you must feel because you haven't known about your OT very long, and it is hard to 'come to terms' with the news. But.....you have lots of friends here, and almost all of us have gone through
what you are feeling right now. Just try to do what you can; keep a positive attitude and look towards the future when someone WILL find something to help all of us.
Hold on.....we are here to listen to you anytime....
Betty
Re: New to the forum? post a quick introduction
Hi all - Just thought I would relate to you an amazing experience I had yesterday at Costco. This past week I got out my luggage tag that I printed from this site with the Handicapped symbol on it. I decided since I was alone on a Saturday going to Costco that I would hang that tag on the outside of my purse and have the handicapped symbol in a place that would be visible to everyone. I got my cart, put my purse in a place where everyone could see the symbol and started shopping. I had about 4 people react to it and when they saw it I was helped beyond belief. One butcher was stacking the roasted chicken from a large cart. I was having trouble reaching to get one in the case and ask him if he could pick one out of his cart for me. He said ' just get one out of the case" very snippy and impatient. Then he saw my handicapped tag and before I knew it he said to me I'll pick out a really good one for you and he even went over and got a plastic bag, put the chicken in it and put it in my cart!!! Even shoppers who noticed the tag asked me if they could help me. When I checked out, the checker commented on the tag, how wonderful it was and would like one for her mother who is disabled! I got her name and am printing one out for her and I will make sure I go back and give it to her. She was so grateful. So Gloria and your dear son, you made my day easier and from now on I'll always have the tag hanging from my purse, very visible.
Re: New to the forum? post a quick introduction
Jo!
What a splendid idea! I haven't used mine in that way, but have it attached to my keys. I think from now on, especially if I am alone, I will do the same as you. It does make others aware you/we have a problem and most often they will try to be very helpful. I find the same happens when I use my cane.
I don't use it often, because it really doesn't do anything to help me because my tremors are so severe. However, it does make others aware I have a problem and people open doors, and offer help.
I must agree with you.....Gloria, and her dear son, who put the handicapped symbol on this site so we could print them out, made a tremendous difference for all of us.
Another good idea shared by you, Jo....thanks!
Betty
What a splendid idea! I haven't used mine in that way, but have it attached to my keys. I think from now on, especially if I am alone, I will do the same as you. It does make others aware you/we have a problem and most often they will try to be very helpful. I find the same happens when I use my cane.
I don't use it often, because it really doesn't do anything to help me because my tremors are so severe. However, it does make others aware I have a problem and people open doors, and offer help.
I must agree with you.....Gloria, and her dear son, who put the handicapped symbol on this site so we could print them out, made a tremendous difference for all of us.
Another good idea shared by you, Jo....thanks!
Betty
Re: New to the forum? post a quick introduction
Betty and Jo: Yes, our OT disability cards are a great help when moving around in the public arena but your kudos for them go to Jeff , it was his creation and goes with all of his internet expertise behind our site. I’m/we are very lucky I have a son who has not only the knowledge but is a person of great compassion ! When traveling I attach them to my luggage, I like to think that they get better care at the airports and they are easier to spot on the carrousels.
To be continued, Gloria
To be continued, Gloria
Re: New to the forum? post a quick introduction
Dear Gloria,
Having known you for many, many years now; and also having met your son, Jeff and his wife, I know he is the one who put the disability cards on the website. He had them when we were at the Mayo Clinic in Rochester; that is when I got my first ones, and have printed many off the site since then. We are truly fortunate to have him maintaining this site. Soooo many people have found it and now even doctors are recommending it to their patients. Yes! Kudos to Jeff!
I have sent them to several women with whom I correspond, and they find them equally as helpful.
Thank you Jeff; and thank YOU, Gloria.
Love,
Betty
Having known you for many, many years now; and also having met your son, Jeff and his wife, I know he is the one who put the disability cards on the website. He had them when we were at the Mayo Clinic in Rochester; that is when I got my first ones, and have printed many off the site since then. We are truly fortunate to have him maintaining this site. Soooo many people have found it and now even doctors are recommending it to their patients. Yes! Kudos to Jeff!
I have sent them to several women with whom I correspond, and they find them equally as helpful.
Thank you Jeff; and thank YOU, Gloria.
Love,
Betty
Anyone living around Sydney wanting to catch up
Hi my name is Bev I live Randwick Sydney N/S/W Australia I have had orthostatic tremors for about 10 years I was wondering if there might be other people living around Randwick or Sydney with o t that would be interested in catching up it would be nice to compare and to be able to talk to other people with the same problems
My email address is bevlodge@optusnet.com.au
Hope to hear from some of you soon Bev
My email address is bevlodge@optusnet.com.au
Hope to hear from some of you soon Bev
Re: New to the forum? post a quick introduction
Hello everyone,
I just joined your group, so I'll introduce myself quickly. My name is Philippe, I am 54 years old and now lives on the west coast in Les Sables d'Olonne in France after spending 50 years in Paris, where I was born.
I am a POT ! (Primary orthostatic tremor) I was diagnosed in 2003 by the team of Professor Vidailhet who was then at the « Hôpital Saint Antoine » located in Paris (France). Doctor Apartis confirmed the diagnosis after raising its record to 16 Hzt tremor in the legs which disappears when walking or at rest.
I was followed from the beginning by a medical team at the Saint Antoine hospital (Doctors Trocelo, Vidal and Yaici), some time by the Pité-Salpêtrière hospital, still in Paris (Dr. Jedynak) and now since I arrived in this part of France by the Nantes University Hospital (Professor Damier ).
The treatments tested were unfortunately ineffective. Whether it Rivotril, Mysoline, Neurontin, Keppra, Avlocardyl, Sinemet, Zoneg …You see we did not stay without doing anything! After this phase of trials; I decided to stop any treatment in 2007, given the poor outcome. The safety concerns with the side effects were much larger than the expected improvement! So I resigned myself to live with my disability and that damn orphan disease treatment.
In 2008 and early 2009 I was a victim of epilepsy, probably unrelated to the POT, while I was driving! The two crises have led to a road accident with serious injuries ... had to agree to head back to the pharmacy ... to cover the risk of new crises and since I am under Lamotrogine 200 mg is an antiepileptic I support fairly well. This one has no effect on the tremor but appears to be effective since there was no new crisis.
After these episodes I reorganized my professional life, I am now much more available there are still two or three months. I left the company that I created there over 24 years ...
Throughout my past life I was an active guy (a little too much around me, it seems!) I had two hobbies, boat and plane. In 2005 upon renewal of my license I had a lot of effort to resign myself, after 13 years of piloting, to stop net! We need a medical certificate to be able to pilot issued by an aviation doctor who has never heard of a rare disease as POT... I have also sell the small sailing-boat who gave me so much pleasure here in the sea, I am no longer able to manage safely with my trembling...
Fortunately I still have all my professional or personal memories of moments and often preferred. This is the basis for new projects that I take the time to talk to you in a future post. Our neurodegenerative disease is described relentlessly and constantly evolving, so I will adapt and travel more quietly. In cargo at my own speed!
Well, I’m looking for information and want share my experience out border. Do not hesitate to contact me.
In a future post I will say you how I’ve change my mind about my story life since I’m trembling.
Sorry for my English…
I’m looking forward to hear from you soon!
Greeting from France.
I just joined your group, so I'll introduce myself quickly. My name is Philippe, I am 54 years old and now lives on the west coast in Les Sables d'Olonne in France after spending 50 years in Paris, where I was born.
I am a POT ! (Primary orthostatic tremor) I was diagnosed in 2003 by the team of Professor Vidailhet who was then at the « Hôpital Saint Antoine » located in Paris (France). Doctor Apartis confirmed the diagnosis after raising its record to 16 Hzt tremor in the legs which disappears when walking or at rest.
I was followed from the beginning by a medical team at the Saint Antoine hospital (Doctors Trocelo, Vidal and Yaici), some time by the Pité-Salpêtrière hospital, still in Paris (Dr. Jedynak) and now since I arrived in this part of France by the Nantes University Hospital (Professor Damier ).
The treatments tested were unfortunately ineffective. Whether it Rivotril, Mysoline, Neurontin, Keppra, Avlocardyl, Sinemet, Zoneg …You see we did not stay without doing anything! After this phase of trials; I decided to stop any treatment in 2007, given the poor outcome. The safety concerns with the side effects were much larger than the expected improvement! So I resigned myself to live with my disability and that damn orphan disease treatment.
In 2008 and early 2009 I was a victim of epilepsy, probably unrelated to the POT, while I was driving! The two crises have led to a road accident with serious injuries ... had to agree to head back to the pharmacy ... to cover the risk of new crises and since I am under Lamotrogine 200 mg is an antiepileptic I support fairly well. This one has no effect on the tremor but appears to be effective since there was no new crisis.
After these episodes I reorganized my professional life, I am now much more available there are still two or three months. I left the company that I created there over 24 years ...
Throughout my past life I was an active guy (a little too much around me, it seems!) I had two hobbies, boat and plane. In 2005 upon renewal of my license I had a lot of effort to resign myself, after 13 years of piloting, to stop net! We need a medical certificate to be able to pilot issued by an aviation doctor who has never heard of a rare disease as POT... I have also sell the small sailing-boat who gave me so much pleasure here in the sea, I am no longer able to manage safely with my trembling...
Fortunately I still have all my professional or personal memories of moments and often preferred. This is the basis for new projects that I take the time to talk to you in a future post. Our neurodegenerative disease is described relentlessly and constantly evolving, so I will adapt and travel more quietly. In cargo at my own speed!
Well, I’m looking for information and want share my experience out border. Do not hesitate to contact me.
In a future post I will say you how I’ve change my mind about my story life since I’m trembling.
Sorry for my English…
I’m looking forward to hear from you soon!
Greeting from France.
Re: New to the forum? post a quick introduction
Hello Philippe:
Thank you for posting a most eloquent history of your discovery and life with POT. Life changes with our disorder but you are making needed adjustments and as most of us have learned we must learn to work around our disability. You are now in position of being with other POT friends who understand everything you have written because we have been there too. It appears medically you were in the hands of some very knowledgable doctors who were able to diagnose you early in your quest. Do you know how many POT patients the medical teams that cared for you have seen? Do you know if there are any on going studies or research at this time in France? All of the treatments that were offered to you most of us have tried without success and it is a known fact that there is nothing on the market today that will give us remarkable relief, however I find when I forget to take my gabapentin I can tell the difference. Since we all have balance problems I can see how controlling a sailboat would be a great challenge. I guess the word challenge is what POT has done to our lives so we must direct our lives in different avenues of doable interest.
Thanks again for your great introduction , Gloria
Thank you for posting a most eloquent history of your discovery and life with POT. Life changes with our disorder but you are making needed adjustments and as most of us have learned we must learn to work around our disability. You are now in position of being with other POT friends who understand everything you have written because we have been there too. It appears medically you were in the hands of some very knowledgable doctors who were able to diagnose you early in your quest. Do you know how many POT patients the medical teams that cared for you have seen? Do you know if there are any on going studies or research at this time in France? All of the treatments that were offered to you most of us have tried without success and it is a known fact that there is nothing on the market today that will give us remarkable relief, however I find when I forget to take my gabapentin I can tell the difference. Since we all have balance problems I can see how controlling a sailboat would be a great challenge. I guess the word challenge is what POT has done to our lives so we must direct our lives in different avenues of doable interest.
Thanks again for your great introduction , Gloria