maggie

I drink 100 oz of water a day, 20 oz five time a day. In each of the 20 oz I squeeze a 1/4 of a lemon into my water. I've done that now for 10 years and it works well for me.

Good luck with your new treatment hope it works out for you.

I watched the video as well, what courage this girl has. My journey has never been that difficult. I'm sorry have no answers either, but will keep your family in my prayers.

I understand your feelings about this. I was in an electric wheelchair for two years. I sat an looked at it for months, just didn't want to go out in public in one. I finally over came my pride got in it and away I went. I now can walk everywhere I go again. It took a lot of hard work but I did it. My advice is use it when you need to and hope that this will not be forever.

I have used a Polar heart monitor for 8 years now tracking my heart rate, especially when exercising. I have had much improvement with my heart rate, but like you my adrenalin will spike, but mine doesn't spike until six hours later. I can't take many meds so when it's overwhelming I use a Xanax to help slow it down. I have started biking to help improve my strength and use a garmin odometer. It measures my heart rate the entire time I'm riding. I then dump this info onto a site called starva and my doc can go in it as well to see how I'm doing. He wants me to train in the 140's trying not to go higher then that. I find that if I keep it in the 140's I can bike for two hours and not get that spike. I also don't exercise too late in the day so that my body has time to relax.

I live in a condo on the 13th floor a year ago I started walking up the stairs. It has taken me a year to be able to walk up all 13 flights of stairs without stopping. I agree walking stairs is difficult, but can be done. Don't get discouraged dancer65, this is where patience and just grit keeps you going. Don't look at what you can't do, but what you can each and every day.

I drink 100 oz of water a day. I eat five small meals a day and at each meal I drink 20 oz of water. I have done this now for 8 years. I don't use those other products for the reason of the chemicals in them

What I found for getting my heart rate lower was to slowing introduce exercise in small amounts. When I started my standing heart rate was 140, now after five years of exercise it's down to 90, fifty beats per minute, I would say that is success. They say swimming is the best form of exercise, but with pots what I have found is: if I use my legs and arms at the same time my heart rate goes much higher. So what I did was to start my building up my leg muscles first, only using those muscles, my heart rate stayed lower. As I have built up my legs and core muscles slowly, I have been able to add my arms to the process as well. I still have a difficult time using both without my heart rate going too high. I have worked closely with my doctor on this. I believe the key is going slow and making small improvements and resting like you are doing. Keep it up, listen to your body, and knowing when to stop is very important, pushing through is not always the answer.

I don't sleep the night through either, since having pots. I now take one .05 mg of xanax an hour before I go to sleep. It puts me to sleep till about 2:30, then I take another one and sleep till 8:00. This past Thursday was the first time in 8 years that I slept the complete night through. I am hoping this will happen more. I still rest in the afternoon for an hour, sometimes I sleep an other days I don't. I find that if I over exercise sleeping becomes more difficult. Learning how to manage all this can be quite difficult.

I have been very fortunate with my pots. I was dx in nov 06, in bed for 6 months and then in a wheel chair for 2 years. Have slowly been getting better. What really helped me was ballroom dancing. I started with only being able to dance for 3 minutes at a time, I can now dance for two hours. I don't think I would be able to work full time, but other then working, I can go walking, shopping, go out with friends, I even started to travel again. I can't say I am fully recovered, but enough that I can once again enjoy life. I don't know if this type of post helps or hurts those of you who aren't doing well, my intention is to bring hope to those who are struggling so, I've been there as well.

It's been eight years since I've flown and finally I took the plunge and tried it. I took a short direct flight and all went well. I was tired the next day and had to take it easy, but the next day did fine, another mountain climbed!!!!! Maggie

I have been doing my homework and found out I'm not on plan b, so they are sending me forms to fill out. Now I am working on getting the supplement plan. Thanks for all the help

Thank you for all this info. I'm going out of town tomorrow, but as soon as I get back I will head to the social security building and see what I can get done. Maggie

I have won my disability case and have been receiving benefits for over 24 months, which I qualify. I have talk to three insurance agents today, which helped me get this far, but now am stuck. Not one agent knew how to get me on medicare. Thanks for all your help, I will look for my state commission number tomorrow and try that route. All the government sites I tried stated that I had too many assets to apply. I should restate that I could get insurance, but the cost started at 600.00 and went to as high as 900.00 a month which is what I'm trying to get across to my soon to be ex, who is going to pay this amount? Maggie

I have been trying all day. I did get through to healthcare.gov and I also have to much in assets to be approved for government help. I also got onto Blue Cross Blue Shield which is my insurance now, and they also stated I made too much, they stated to try and get on medicare, but don't have any idea how to get on it. Maggie

I am in the process of getting a divorce and will be losing my medical insurance through husband's work, has anyone on here gotten private medical insurance, if so how? I could really use some help this process is so overwhelming, thanks. Maggie

I discussed this with my dance instructor and he stated the reason for me getting dizzy he thought was from the force of the elevator going up, which in turns drains the blood from your head faster then normal, thus the dizzy spell. It wouldn't make any difference sitting down, but I was wondering if I layed down in the elevator, that way keeping my body level would that help, but then again do I really want to lay down in the elevator where everyone is walking? I really don't think so, unless maybe I took a mat with me to put under me. Then I thought of what if I met someone getting on the elevator and I'm laying down, how does one explain that? Anyone have any suggestions? Maggie

Thank you for all your responses. It took me some time to figure out why I was getting so dizzy when I have never had this before. Here I moved from a big home on 10 acres to downsize to a small condo so I wouldn't have so much to maintain. Now I find I can't leave my small condo too many times in a day or else I have to deal with the dizzy part. I thought I was making such a wise choice and now I face this problem. Oh well hopefully my body will adjust to elevators, I don't think I could walk up 13 flight of stairs although I have looked at the stairwell and thought it over!!!! Maggie

I just recently moved from our home into a condo unit on the 13th floor. I am finding that if I ride the elevator too many times in one day I am starting to get dizzy. Has anyone else had this experience? Maggie

I did sign up for this program and from my experience it doesn't work. Did you know that you can't be on any medications for pots while doing this program? While I agree that exercise is an important part of our plan to try and improve, it is not the cure for pots, in my humble opinion. Maggie

LindaJoy, Dancing is what got me back on my feet again. I don't know what type of dancing you were doing, but I started about a year ago with a pro ballroom instructor and have gotten my heart rate down around 40 beats per minute. I started with only being able to dance for 15 minutes to very slow music. Now I am up to an hour and have just started to increase the beat of the music to get me to the next level. My neuro can't believe the difference dance has made with my pots, maybe you could just try it out again only going real slow. Maggie

CarrieJessica I don't breed my dogs, but I do extensive research to find the dog that I would believe work well for me. My pots restricks me from doing training of others, but I have trained my daughter who also has a bullmastiff and hers is trained as well. She trains dogs perfessionally and does a good job. Mine do not detect any sort of blood disorder, they are trained to stay right by my side if I happen to faint. It hasn't happen often, but I live in a rural area and when I walk if I fainted on the street, a person driving might not see me lying on the road, but with those two dogs standing over me, no one will miss me! They really keep me company on long days when I'm not feeling well. I am trying to start a business with my daughter using our mastiffs to protect children who are being bullied at school. I can't believe how long it takes to get it all in place. Maggie

I have trained both of my Bullmastiffs to be service dogs. If you look up the federal guidelines you need a script from any doctor stating you need the service dog. The script does not say why because that is in violation of your rights. My neuro wrote a script for both my dogs. You can train them yourself and get the vest on line for your dog. They need to be well trained and not a bother where you go. I have never been stopped and asked to see my script even with the use of both large dogs. Maggie

Namoi, I was riding a recumbent bike for three years and was just so sick of it I couldn't do it anymore. What works for me is I found a dance studio who has an instructor who took me on as a challenge. I think exercising upright instead of sitting down helped. My balance was terrible and with the dance lessons slowly improved. I wear a heart monitor to keep track that I don't go too high and we just started with learning how to dance a few slower dances. I started out with a rumba which is quite simple, plus my instructor toned it down to where I wasn't moving too much at first. As my heart rate went down he increased the movement slowly and that is how I was able to get my heart rate down. My neuro is so impressed with my improvement. My instructor has given me exercises to do during the week to help build up my endurance, balance, and leg muscles. What I never knew was that dancing really hits most of your core muscles as well so my stomach muscles are nice and solid as well. My posture has improved as well from dancing, it seems to be working for me. Maggie

I was accepted into this program and when my neuro saw what was required, he stated forget it. I am exercising now and have decreased my heart rate by 20 beats per minute in six months. I started with only 15 minutes and am now up to one hour a day. You can try it and see if it works for you, but I know it would never have worked for me. Maggie