Ernie

Hi Everyone, For those who don't know me I was bedridden and in a powerchair for 8 years, fainting 5 to 10 times a day. I saw Dr Grubb and Dr Goldstein and my local doctors who helped me tremendously with medication. Then I went to rehab for a year, exercised with older people (average 72 years old) for a year, and now balroom dancing. I have been very busy for the past 14 months renovating my house with my husband. We finally finished the job and now we just put our house for sale as we want to buy a smaller one. I still have difficulties going upstairs and we want a bungalow. We presently have a huge cottage. Also, during the last year I have been taking 4 - 1 hour ballroom dances classes per week and practicing every second Saturday. When I first started dancing last year I danced 5 minutes and sat 5 minutes. Now I can generally go through the whole class depending on which dance we do. I can also stand up much longer than I used too last year. So, I realise that dancing helps me improve my general health. I am always careful to sit down when I feel dizzy or nauseated. When I tell my husband that I have to sit down and I rush to a chair he does not ask or argue. He comes and sits with me and waits until I tell him I can continue the dancing class. I am so happy to be able to do something I enjoy doing again. I am far from cured but I have a better quality of life. I still faint about twice a month but I can live with that. Love to all.

Hi, For me and the others in my family who have this disorder we have the opposite problem. We have a very high sex drive, male or female. We can have sex everyday and we think about it all the time. We have the hyperadrenergic POTS. Our sexual problem is so bad that I wonder if we secrete extra phehormones. We have lots of proposition by strangers of the opposite sex. It become a hassle in the long run. I some propositions when I was in my power chair dressed with old clothes!

Hi, Sorry you are feeling so bad. Your video is very impressive. I think it should convince the attorney and the judge!

Hi, Thank you all for your nice comments and support. I will keep you posted once in a while. I am very busy because we are renovating the whole house to sell it and I still have 2 dancing classes per week. Love

Hi, I forgot to say that when I started rehab I took depo provera for 18 months to stop my periods and it gave me a better chance to improve myself.

Hi, I think rehab would help a lot of us. I had to give it a try for a long time before a saw the benefits. I still do faint from time to time but now my biggest trigger is dehydration. When I started to dance last fall I did not know I was sweating that bad and I had a few "incidents". Then someone in the class pinpointed that it was always when I forgot to drink my water. Since then I have learned that I have to drink from 500-1000 ml of water with electrolytes per hour when I dance. With that I am OK. I am very careful of the other triggers and I control them very well.

Hi, At first I was not even able to exercise in bed. I was only recuperating from fainting about 3-6 times per day. Then I stated to exercise in bed a few minutes in bed even if I found it boring. Now I can do much more than exercise. I am helping my husband renovating the house, cooking, shopping. I have to plan my energy and rest during the day when I am too tired.

Hi, I started to train in blocks of seconds, like 10 seconds and 60 seconds of rest. I would increase the exercise as I would tolerate it. The session lasted one hour but I trained maybe 7 minutes overall in it without counting the resting period. I am still not normal. My POTS is genetic so I will never be cured but I am aiming for a better quality of life. I still have nausea, headaches, tremors, diziness, fatigue. I sleep 12 hours per day. I can walk for one hour (or dance) but I can't stand still for more than a minute or two. I can now shop alone but I bring my portable chair to sit when I wait in line. I sweat tremendously so I need to change clothes about 3 times a day and in the summer I need to wash myself twice a day. If we consider that in 2007 I was fainting every single time I was standing (on all my meds), bedridden, on bedban, washed, fed in bed and the doctors wanted to send me to a nursing home for the rest of my life, I have made a great turnaround. As more advice I would say to find a good team of doctors who believe in you and never give up on yourself. I feel I will improve so more I just don't know how much and how long it will take to get to my peak.

Hi, I went to cardiac rehab. I did some floor exercises for about six months to strenghtens my legs. Then when I was strong enough they added sitting exercises. A year after I joined a group of older people who were training twice a week and were doing a bit of cardio. I had to push every step of the way because my muscles were hurting so much and I was exhausted. Then when I came home I had to sleep a couple of hours. Last year after my last hope for top notch doctors' help failed I decided to take my case into my own hands. I am a homeopath. I studied 4 years for that degree and I practiced homeopathy for 15 years. Doctors used to send me their desperate cases which they could do nothing for and I was expected to figure out a solution. So I thought that I might at well work on my own case as if I was my client. It took me several months to get the good combination of homeopathic medications. Now I feel comfortable with them and they are helping me to improve. The process is long because I have 9 years of deterioration to catch up but I feel that my body as the capacity to improve some more. P.S.; If you choose to take homeopathic medication you have to consult someone who is very competent and knows very well what he/she is doing because each person is different and even if we have the same disorder ie POTS we don't need the same homeopathic medication. Homeopathy does not work the same way as regular medicine.

My dear Friends, It's been awhile since I posted. I amupdating you to encourage you see the light at the end of the tunnel. As many of you know, I was bedridden for 7-8 year, went to rehab 3 times a week for a year, then trained in a group for a year . Since last September I have been doing Ballroom dances 3 times a week for one hour. At the beginning I had to sit every 5 minutes because my BP was so bad but now I can dance for an hour, no problem! We have started renovating the house to put it up for sale and I am also helping my husband doing the work like cutting the wood, cutting the ceramic tiles, purchasing the material. I used to wear diapers night and day and now I can go without them. I can even sleep 12 hours without having to get up to pee in the middle of the night. I am very happy with the progress I made. I continue to make progress even though it is slow. I think about you often and I am very grateful for your support through my rought time. Love Ernie

Hi, He is a top notch researcher who has already found some other genetic mutation. He has a personality similar to Dr Grubb. He is very human, knowledgeable and compassionate. Everybody loves him. I am very optimistic and enthousiastic about this doctor. Maxime, I will PM you with more info.

My dear friends, Thanks for being happy with my progress. I will still be busy this fall and winter because a researcher wants me to recruit 40 members of my family to help find the genetic mutation. So I have to do their medical history, hire a nurse to take the blood, send the blood and organise everything else around the research. I will keep you posted on the progress of the research.

Hi everyone, Welcome to the newbies. I have not posted in a few months because I have been busy living my life. My health has improved lately. I have been going out all summer to parks, taking pictures and going on rides. I went to see the number one world researcher on muscle paralysis and he is interested in my case. As some of you remember as was bedbound and wheelchair bound for 7 years. Then I went to rehab for 9 months, then I took a gym class with older people for 9 months and now I am taking private balroom dancing classes with my husband!!!! For 2 years I went to the hospital 5 days a week every week. It was a full time job but it paid. I am glad of the progress I made. I keep my fingers crossed that I will keep on improving or at least stay at the same level. I still have to sleep 12 hours a day, and cannot work but it is better than fainting every single time I stand. I am now able to do some cooking and have some sort of life. I can go out alone and dance for a few minutes, rest and dance again. My legs are getting stronger so I hope that in a few months I will be able to do more.

Hi Morgan, I am so glad that you made it home. It was a pleasure to share your update.

Hi everyone, I just got an email from Morgan's husband. He asked me to tell you that the surgery went fine. The doctors' team and nurses were prepared for her paralysis attack and other health issues and they were able to handle it very well when it happened. She is still at the hospital and might be leaving today. Ernie

My Dear Friends, Thank you for your support and understanding. I have made a new friend who accepts me with my limits. She has invited me to her place so I will be able to swim in her swimming pool and spend some time socialising with her. I also have many social gathering in May and June which are important to me. So I have a new life and made friends who can deal with my limits and help me out. I promise I will post from time to time. Love you all.

Hi, I am not posting much lately because I am keeping busy with a more busy social life. I will keep reading some post but I will not be around much. Have a nice summer.

Hi Morgan, Sorry you have another health issue. Hope the surgery goes well.

Hi Tea, I hope you have a short and productive stay.

Hi, I was wondering if any of you who went to Vanderbilt has a research patient got the report of your testing? Was it easy to get or did you have to complain or do something else to get it? Thanks

Hi, Good luck. I'll keep my fingers crossed.

Hi, You can PM me if you want to talk.

Hi, I have 2 like that and I cannot go anywhere without it. I always always carry it around and sit everywhere. People comment me on how it is intelligent to sit to wait instead of standing.

Hi, Not on this forum.

Hi, Thanks for your encouragement futurehope. As Jan mentioned nutrition can help. I am just starting a new treatment to detox my body on Sunday. It is suppose to help with a lot of thngs. I am willing to give it a try because some of my family members have had success with it.