Blog About Pots

[roxie]

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

[TXPOTS]

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

I love her blog. She just finished Dr. Levine's protocol with good results. Her blog is very positive and full of helpful information for all POTSies. I believe she's had 4 POTS flares a various times throughout her life, which I found interesting. I'm here in Texas, so I have considered trying his protocol.

[roxie]

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

[TXPOTS]

I will. I have to admit I'm a little skeptical because I currently run 5 miles, ride a recumbent, and do light weights. I was in excellent shape when I first came down with POTS and am back in great shape now after a year in bed. However, I can not stand or sit without very bad symptoms. I am homebound, aside from my work out routine. The movement of exercise must help the blood flow, but when I stop moving, the symptoms hit with a vengeance. His protocol may target different muscle groups though. I think exercise is absolutely critical, but perhaps it helps certain subtypes more than others. I suspect I have a sub type called low flow POTS, and my test results seem to confirm this.

[yogini]

Thanks for the link. It is an interesing blog! Though some don't, I think many of us have room for improvement. Our bodies are all different and different thins work for different people. It is always nice to hear about something that is working for someone. There are SO many things out there to try. I have had POTS for mre than 6 years and I am still experimenting and still improving. I don't think I have cardiac atrophy as I have remained fairly active throughout my condition. Exercise has been a big part of my recovery.

[roxie]

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?

[TXPOTS]

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?

Have you had your angiotensin II checked? I have been reviewing some of Dr. Stewart's studies, and it seems there is a subset of patients with low flow POTS who have low aldosterone and low renin, but high angiotensin II. There are angiotensin II receptor blockers, like losartan, so I wonder if this will be a future treatment option. It seems with low flow POTS the problem is too much constriction. I'm having my angiotensin II tested this week, just to see and test this theory. I also am going to try everything, so I may as well try the Levine protocol if he makes it available.

[roxie]

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.

[TXPOTS]

Thanks for the heads up. My renin and aldosterone are super low, so we'll see about the angiotensin II.

[maggie]

I just got off the phone with Dr. Levine's associate and have started the process to see if I qualify for this program. It goes through my doctor here in Florida so I won't have to travel to Texas. It will be interesting to see what comes of this, I'm hoping maybe this will help me.

Maggie

[TXPOTS]

I just got off the phone with Dr. Levine's associate and have started the process to see if I qualify for this program. It goes through my doctor here in Florida so I won't have to travel to Texas. It will be interesting to see what comes of this, I'm hoping maybe this will help me.

Maggie

Good luck. Keep us posted on how it goes.

[Nikki]

I haven't seen this before. I will have to check it out. Looks like an interesting blog!

[ramakentesh]

Dr Levine believes (probably incorrectly) that all forms of POTS respond to graded exercise. Certainly some forms will, but others wont. Infact I believe some of these exercise programs are based on the idea that all forms of OI are 'deconditioning' despite the fact that sportspeople have contracted POTS.

There are two forms of low flow POTS - one where MSNA firing is over active due to angiotensin II mediated neuronal nitric oxide deficits and the second possibly caused by NET deficiency (increased vasoconstriction but overall reduced central outflow). Decreased neuronal nitric oxide seems to increases sympathetic activity at every level and potentiate the effects of norepinephrine.

Losarten has not been tested in a double blind study for treatment of POTS. it was only found to improce the cutaneous (skin) blood flow deficits in Low Flow POTS - which may or may not translate to an overall improvement in symptoms. Theoretically anything in this form of POTS that increases the bioavailability of nitric oxide would be beneficial.

Exercise intolerance in POTS is also associated with reduced neuronal nitric oxide.

I stopped reading most of the blogs - they often to just report doctor's opinion or theory as fact.

[TXPOTS]

Dr Levine believes (probably incorrectly) that all forms of POTS respond to graded exercise. Certainly some forms will, but others wont. Infact I believe some of these exercise programs are based on the idea that all forms of OI are 'deconditioning' despite the fact that sportspeople have contracted POTS.

There are two forms of low flow POTS - one where MSNA firing is over active due to angiotensin II mediated neuronal nitric oxide deficits and the second possibly caused by NET deficiency (increased vasoconstriction but overall reduced central outflow). Decreased neuronal nitric oxide seems to increases sympathetic activity at every level and potentiate the effects of norepinephrine.

Losarten has not been tested in a double blind study for treatment of POTS. it was only found to improce the cutaneous (skin) blood flow deficits in Low Flow POTS - which may or may not translate to an overall improvement in symptoms. Theoretically anything in this form of POTS that increases the bioavailability of nitric oxide would be beneficial.

Exercise intolerance in POTS is also associated with reduced neuronal nitric oxide.

I stopped reading most of the blogs - they often to just report doctor's opinion or theory as fact.

I got my first significant POTS symptoms 2 hours after an intensive swimming work-out. At the time I became symptomatic, I was swimming 75 laps of a 25 meter pool in 45 minutes, weight training, jogging 5 miles most days, so I was not deconditioned. Perhaps, I got dehydrated, but I had been this active since childhood. I have spoken to many POTS patients who were in similar physical condition when first getting POTS. I agree with you, Rama. I will say that laying in bed makes my symptoms far worse and exercise has helped, but it is no where near a cure nor are the Florinef, salt, and DDAVP that help me keep hydrated. I now jog 5 miles/ day again, but honestly, I could probably exercise until the cows came home, and I would still have POTS.

I had my angiotensin II level drawn yesterday. I just want to see if I fall into the high angiotensin II category. Exercise is supposed to boost nitric oxide levels, as well as l-arginine and citruline, but I am skeptical of supplements. I haven't read the study, but I think there is also an article addressing low dose aspirin and low flow POTS. In the future, it may become critical to diagnose exactly what subtype or mechanism is causing POTS. Maybe that is why so many POTS patients have horrid drug reactions. We need to more specifically target therapy.

[TXPOTS]

I just wanted to resurrect this post because I am looking at POTS and exercise in a new light. Dr. Levine's team was kind enough to give me some tips. I was starting to question whether I would make any more improvements and feeling yucky from the hot weather. Over the last week, I am feeling better than when this whole nightmare started 2 years ago. Yesterday I was able to be up all day and play with my kids. It was heaven! The type of exercise makes a huge difference!!!! I don't think I was ever deconditioned, but my body needs a certain kind of exercise due to genetic variation. I'm not saying his treatment is for everyone, but it is making a big difference in my life. I am still on medication, so I am using a mix of Dr. Levine's methods and my own POTS doctor's suggestions. I think I have been over-analyizng all the studies and various sub-groups. Now it's time to relax, have a more positive attitude and strive for a more normal life, and let the researchers battle in out. If you are on an exercise program, I would advise staying positive and not let posts like MY former posts and rants discourage you. Dr. Levine's study should be coming out soon, and I hope it helps many patients.

[ramakentesh]

These exercises have made that dramatic a difference already? Im happy for you.

Exercise can have dramatic effects in some patients - it seems most patients reach a level where all of a sudden pushing helps rather than hinders. Right now if I DONT run I feel much worse than if I do and after a run its the only time my body feels relaxed and 'rested' if you get my drift.

I think I have been over-analyizng all the studies and various sub-groups. Now it's time to relax, have a more positive attitude and strive for a more normal life, and let the researchers battle in out. If you are on an exercise program, I would advise staying positive and not let posts like MY former posts and rants discourage you. Dr. Levine's study should be coming out soon, and I hope it helps many patients

I can see your point. Why waste life reading about something when ultimately there are smart people already on the case. In my case I dont read stuff that often any more but I like to be informed because what I was being told previously made no sense to me. Still when your a patient you dont have access to the bulk of findings anyway (which arent usually published). But then again its good to be informed simply incase new research provides something beneficial to mention to your doctor. But I think part of the improvement in POTS comes in my experience from previous relapses from a certain 'pushing on' or 'ignoring'.

I did not want to discourage people from exercising but Ive met patients that are in a MUCH worse state than I am - and in their cases I think its almost patronising for some doctors to suggest they are just deconditioned (in other words almost lazy). So i tend to take a hard line when someone preaches that the only way to 'cure' or 'fix' POTS is to get off your behind and exercise (indirectly suggesting that by no exercising, a patient is choosing to remain ill).

i can do it no problem, but some patients are far too ill.

Ive had three relapses and this last one was at least twice as bad as my previous two so it makes me realise that it can be a lot worse than I ever imagined. And then there are patients that are far worse than Ive ever been.

[TXPOTS]

Rama,

I have been in the hospital 5 times in the past year. I was so ill that I could not get up to use the restroom by myself. I am still on my meds while embarking on the exercise regimen. I believe if I can exercise, than anyone can with a physician directed program. I am not a patient of Dr. Levine's, but I think he is on to something. His study should be out next month, and he certainly acknowledges that many patients were very active before POTS. There may be a genetic predisposition explained. And YES, I've noticed quite a dramatic improvement from only a week of weight training and rowing, but I was already exercising quite a bit already. I am not going to waste my energy defending myself since this is not humanly or scientifically possible. I don't believe it myself quite honestly. It is probably just the elation that I am actually able to walk around the gym and do weight equipment and rowing, when I didn't believe I could. I also started taking a nitric oxide precursor. My physician wants to do a case report if the results are positive. I don't want to disclose the supplement because I am afraid that it may actually make some POTS patients worse, so I want to give it a longer trial. I'm sure you already know which supplement I am referring to. Of course, I could crash and burn tomorrow.

[potsgirl]

To those who can exercise but still be very sick with POTS, I'm glad to know I'm not alone. People think I'm crazy that I can go to the gym and do 40 minutes on the Cross Trainer or EFX and a few weights. I'm nowhere in the shape I used to be, but I think I'd lose all hope without my exercise. I still can't stand without getting very dizzy, and I have all of my POTS symptoms, but during exercise I feel pretty good. When I'm done I can feel pretty crappy, though.

Just nice to know I'm not alone. And yes, I was really in good shape when I became ill, too.

Cheers,

Jana

[roxie]

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.

[blueskies]

Hi,

I was walking my dog -- actually son's dog which I'd 'inherited' for 4 hours a day. Most days 2 hours in the morning and two in the afternoon and walked 'very fast.'. I was very fit. So was the dog. But one day while out walking I studdenly couldn't walk another step and felt like I wasn't going to fall over. This happened about 8 years ago now. Before I knew it, I was on my butt on the ground wanting to lie down -- brain fogged, sick etc.. (I had experienced this a couple of times before but after a week I was back on my feet each time). This time, though, I was unable to do any further exercise apart from keep house and sometimes cook (standing still preparing meals in the kitchen will do me in). This lasted for 4 years and I went from being extremely fit to very deconditioned. So it wasn't the deconditioning that 'started' the OI of POTS. It was the POTS (undiagnosed for another 4 years). I'd always had some problem with walking at times. And a LOT of problems when out when I'd been walking and had to stop moving and wait at crossings for the green light. That's when the OI would really set in.

This past 2 years I've been doing mat pilates mostly. But I went through a period late last year where I didn't exercise for 7 weeks. And am now in a period of not exercising again. Only this time it has lasted 3 months. I'm 54 and 'no exercise' really shows on me. But I just don't feel well enough. I could start swimming again (I've found swimming to be the easiest exercise for me if I can get to beach) but winter has started in Australia and although the water temps are still fine for swimming at the moment the air temp is too cold. I can't warm up when I get out of the water and it's very painful for about 4 hours after. Shivering and shaking etc.

trying to exercise wihth pots is a mind-field I find. I was thinking about trying to get a second hand rowing machine. Has anyone had any success with one? It's a 'sitting down' thing that maybe I could do. Like mat pilates is a sit down or lie down set of exercises.

[juliegee]

Interesting. Like others, I can exercise & do benefit from it BUT it doesn't cure my dysautonomia. I did a 20 mile bike ride today, run regularly, and am considering a triathalon. I'm great as long as I'm moving, the problems occur when I stop .

I've never participated in Dr. Levine's program, but am intrigued. For some reason, I've always LOVED rowing- something about the expansion and contraction of the chest muscles feels fab .

I'd like to know what supplement you're trying, TXPOTS. I have NO idea what type of POTS I have & understand that it could worsen things- wonder if I've tried it before.

I'm looking forward to seeing Dr. Levine's article. Hope someone will post it here.

Julie

[issie]

OKAY, I'll start the part of the conversation for those of us who can't or find it nearly impossible to exercise. Granted I have issues because of Ehlers Danlos. I have vascular issues that cause my veins NOT to constrict enough to bring blood back up my legs and have allot of blood pool in my abdomen that causes allot of nausea. When I try to walk or stay upright on my legs for very long, I get nauseous, faint, dizzy and start feeling like my legs will not pick up. When I stop and try to rest, that's when my pulse starts going sky high. So, I have to sit or lie at that point and it has to be rather fast. There's the feeling of complete unwell and if you try to push through it, you are down and sick in the bed for days afterward.

I've always wanted to be an athlete and be in good shape and be able to do all the things people do in sports or play, but I've never had that ability. I've been at times nearly wheel chair bound and have had to use a cane to walk. I think I have some other issues going on too, but the autonomic nerveous system can and does affect us all in different ways.

We should be a little more tolerable of differences, because we are all dealing with the same POTS issue, no matter what the reason or cause. It's so complex and different for all people. It makes me sad that I can't go run, or go to the gym and do those type things. I'm happy for those of you that can, but feel a deep sense of inadequancy in my body. It's so very frustrating.

Are there others out there with the inability to exercise?

[TXPOTS]

I believe Dr. Levine excluded patients with EDS from the study, so he is not saying all patients will be cured with exercise.

Issie,

Are you able to do recumbent exercise? Swimming, recumbent bike (one that leans way back), floor exercises? I just wonder whether increasing muscle mass would not cure, but still benefit a patients with EDS.

Again, my original posts on exercise were negative, so I am just trying to give encouragement and not scare the daylights out of patients who may be starting to exercise. I don't hold it against or think less of patients that can't exercise in any way.

[firewatcher]

OKAY, I'll start the part of the conversation for those of us who can't or find it nearly impossible to exercise. Granted I have issues because of Ehlers Danlos. I have vascular issues that cause my veins NOT to constrict enough to bring blood back up my legs and have allot of blood pool in my abdomen that causes allot of nausea. When I try to walk or stay upright on my legs for very long, I get nauseous, faint, dizzy and start feeling like my legs will not pick up. When I stop and try to rest, that's when my pulse starts going sky high. So, I have to sit or lie at that point and it has to be rather fast. There's the feeling of complete unwell and if you try to push through it, you are down and sick in the bed for days afterward.

I've always wanted to be an athlete and be in good shape and be able to do all the things people do in sports or play, but I've never had that ability. I've been at times nearly wheel chair bound and have had to use a cane to walk. I think I have some other issues going on too, but the autonomic nerveous system can and does affect us all in different ways.

We should be a little more tolerable of differences, because we are all dealing with the same POTS issue, no matter what the reason or cause. It's so complex and different for all people. It makes me sad that I can't go run, or go to the gym and do those type things. I'm happy for those of you that can, but feel a deep sense of inadequancy in my body. It's so very frustrating.

Are there others out there with the inability to exercise?

I am not able to do cardio at all, even on a BB, my HR goes too high (180+) and the sparkles start dancing before my eyes and I end up in the floor dry heaving. I can do strength training though, and I do Pilates with a PT once a week. I am totally wiped out for 3-4 days after and unable to do much at all other than the bare minimums of daily functioning. I have always felt that deep sense of inadequacy, my family always called me lazy and my coaches at school were even less kind. I still feel a certain resentment towards runners (something I've never been able to do.) Despite my cardio limitations, I was always the most fit member of my family: karate, weight lifting, etc. None of the things I did were aerobic, always anaerobic. Even with Pilates, working completely supine, my HR will go high if we try any cardio, and my legs will collapse. Even those of us who can exercise have "abnormal" limitations. Don't feel inadequate, work up as you can and never push beyond your own comfort zone. I try to stop with the feeling that I could have done a bit more instead of pushing myself to exhaustion every time. I am pretty sure that every one of us had a time where we were absolutely unable to exercise. As far as I have gotten, it is not where I want or am "supposed" to be.

[issie]

I believe Dr. Levine excluded patients with EDS from the study, so he is not saying all patients will be cured with exercise.

Issie,

Are you able to do recumbent exercise? Swimming, recumbent bike (one that leans way back), floor exercises? I just wonder whether increasing muscle mass would not cure, but still benefit a patients with EDS.

Again, my original posts on exercise were negative, so I am just trying to give encouragement and not scare the daylights out of patients who may be starting to exercise. I don't hold it against or think less of patients that can't exercise in any way.

TXPOTS

I love to swim and do whenever I can. As for floor exercises, that's really hard since once I'm down I can't get back up. I'm sure if I could strengthen my leg muscles and figure out why I'm having such problems with my legs -- I might could figure out other ways to get exercise. Sometimes, my legs won't work. It's like they get paralyzed in place. I drag one leg to walk. I was born with twisted legs and club feet. The club feet go along with the EDS. It's one of the signs of the illness. I did recently get a Pilates type table and was just beginning to get the motivation to use it when I broke my leg/foot soooo bad. So now that is on hold until I can get the rehab and relearn to walk on that foot. It will be a long drawn out recovery. The doctor said I may need more surgery at the 10 month mark. I started physical therapy today on it. Oh, how it's going to hurt to get it better. It seems life can be a vicious circle sometimes.