roxie

Does anyone else feel like they've eaten so much salt it's started to burn their mouth? I've been having problems with that for a few months now and don't know how to stop it. If i put salt on something that can't completely absorb it, like a carrot or something my mouth and tongue will burn for a while after. And sometimes out of nowhere it'll feel kindof burnt too, Anyone else?

Kristen: my plan is to start at a more manageable level for my body and build from there. Reading about heart rate zones and stuff there is absolotuely NO WAY I can row for 30 minutes with my heart under 100, my resting hr is like 95 just sitting up puts it over 100

Abbriggs: did you continue exercising after the study? How much of an improvement did you see? How long did the improvement from the program last?

I was disappointed too, I thought it was going to be a larger study and that there was going to be a more dramatic improvement. Plus it talks about POTS without dropping bp. If i remeber correctly my bp drops so does that change the study for me? And the grinch syndrome...is that a joke? I've been thinking about it a lot today and any impovement is improvement. I think the aim of the study is more to reverse the deconditioning we can easily experience so that any problems we do have are actual POTS not decondotioning all i know is it isnt the revolution we all hoped

Ok, thanks! I'm interested in reading his study when it comes out. Keep us posted on how your daughter does

Does dr levine judge the effectiveness of the program with only a 10 minute stand test? It's great to be able to stand that long without a hr increase but I would think you could still have POTS even if you can stand for 10 minutes

Jana, how did you start out tour exercising? I've tried before but never got passed 10-15 minutes without wanting to die. I'm interested in how anyone got passes that to a higher level.

Thanks, today's a better day than last night. I do have a few things I like to do. I just can't do them as much as I'd like... Maybe one day though!

Sue, I will look into it and ask some questions. It never hurts to check eventhough I've been checked and checked for things. I've had POTS for 12 1/2 yes every couple years I get a good workup of things so nothing sneaks through

I don't know the exact reason, I believe it has to do with hypocolemic POTS. I had a red blood cell mass study about 9 yts ago and that's what it showed. Two years ago I had an upper gi scope dne with a biopsy of my stomach, wouldn't it have shown in that? I'm sorry you have to go through the same things I do. It's very hard to see everyone moving on and any age. I am constantly fighting boredom bc I don't have the energy to do much and when I see other people being "normal" it just hurts. I don't know if there is any way to deal with it besides feeling the pain and the refocusing on the positive. Anybody else have other ideas?

How do you guys deal with feeling like everyone else is moving on with their life, having great things happen, and you're stuck at home sick and in a rut? I try really hard to be happy with anything I can do and any improvement I see but its sooo hard being homebound and seeing people my age get to graduate from college, get married, move to awesome cities for jobs and I can't do anything. I"ve had POTS since I was 12 and it has always been severe. I didn't get to go to school and have a normal life and the few friends I"ve had are all moving on when I'm stuck at home with my parents unsure if I'll ever be able to be independant. Do you guys have these feelings? How do you deal with them?

This is an interesting topic bc I'm in the northeast and always talking about wanting to move someplace with a moderate temp like san fransisco, Hawaii, or new Zealand. I'm also a sweater especially at night. A lot of nights I wear sweat wicking work out clothes to bed so I don't wake up drenched. It's weird that some pots pol have trouble sweating and some sweat too much. I wonder if it has to do with the subtype?

Do any of you have any routines that help you fall asleep? Or anything to sleep through the night? I have sleep trouble but really don't like taking meds to help me sleep. For awhile now I've been taking a bath and soaking in it before bed and that has helped some. Any other ideas?

Thanks Ernie! You've come so far! Are you able to do more through the day than just your exercises?

That's fabulous Ernie! What else did you do beside exercises to help you regain strength? Do you feel you a "normal" or do you still have symptoms and have to take rest breaks? How long did you start out exercising? I have to say I've been feeling very lately like I'm never going to be able to do anything substantial. I've been sick for 12 1/2 years and most of it has been bedridden. Do you have any other advice on how to start making progress?

I did. He first did a tilt table and said i had low-flow. Then he had me get tested a few weeks later for the angiostensin II and plasma renin, a few weeks later her sent an email saying no abnormality was found. That's all I"ve heard from him. They take a lot of blood for that test so make sure you eat iron rich foods.

I also have low-flow pots, dr Stewart told me.Ive had pots for 12 1/2 years. I got sick when I was 12 at the end of soccer season so I know it wasn't bc of deconditioning so I don't think exercise is a cure all but I wonder if some of the theories in protocol can spur some greater improvement?

If you do try it let us know how it goes!

Has anyone been following this blog? http://www.potsrecovery.com/ this lady is chronically her journey on an exercise protocol to help pots by a dr in tx. She also posts lots of studies and information on pots

it seems like theres a wide variety of severity here. some are bedridden and some can go to tne store without a wheelchair. has anyone gone from being bedridden to to walking when you go somewhere? how did you achieve that?

thanks, I couldn't get an appointment with my dr for two weeks so I still have some time to think about how I want to approach it. A couple years ago i did have a nerve conduction study done that showed carpal tunnel, i don't know if that holds and clues.

For about a month now I've been dealing with feeling pricked by pins, needles, and tingling randomly throughout my body. It's not excruitationg but different and annoying. I'm having a really hard time deciding if I should talk to my dr. If I tell him I'll afraid he'll send to me a neurologist and do a ton of tests. That is soo hard on my body when it may be nothing more than stupid POTS anyways. There had been a lot of stress swirling around my life lately nad my mom seems to think that it could be a reaction to all the stress. I guess when you are stressed out and breath shallowly the tinlging and such can happen. then, i also read about neuropathies on the this forum and I"m just all confused as to what I should do. SO I have a few questions about neuropathies if y'all would kindly answer. What does a neuropathy feel like? I read that it is sharp, tingling to the bone. Mine isn't to the bone just the top of my skin Is the pain constant? Mine isn't, it comes and goes. i can go a week without it and then a week with it. Is it localized or random? mine mostly moves through my shoulders, arms, neck, legs, and feet. Can it be made worse by sore muscles? can it be made worse by a lot of prolonged stress? and lastly, the one I'm dreading most (deep breath) if after 12 yrs of POTS I've developed a mild neuropathy, does this mean my POTS is progressive? ~a very confused bananas

Thanks for the input! I guess my problem isn't so much what to do, i have tons of things I want to do, books to read, stories to write, crafts to make, things to learn online but how to do them? I get tired with 20 minutes and then have to rest for like 2 hours. once I get out of that 'deep" rest I get bored. When I try to do something to soon I feeel sick doesn't gameboy or nintendo ds bother your eyes and make you nauseas and dizzy? video games have done that to me in the past but i've never tried nintendo ds

I have such trouble with boredom. I want to do things but am to exhausted. When I force myself to do things I feel worse and want to cry because it takes so long to recover and i have nothing to occupy myself in between. I've kindof had enough of tv, movies, radio,and audiobooks soo...does anyone know of anything to do that you don't have to actually use energy, concnetration of movement to do? i know this is a weird question but its a real problem for me ~bananas

The tingling seems to be a bit better today but I still get it at times. My mom doesn't think it's anything to worry about right now, if it persists I'll have to talk to my dr. I did notice in the symptoms page here tingling senstions is listed as well as listed for a side effect of mestinon. So it really could be one of them. Maisie I hate the flavor of bananas and always have! As well as their mushiness. haha, Mrs. Burschman. Actually, I really shouldn't be low on potassium bc I choke a banana down everyday plus two glasses of milk