I Really Believe Exercise Is The Most Effective Treatment Currently.

[firewatcher]

For everyone that has gotten great results from exercise, I am very happy for you and very envious of you!

I am one of the "no-improvement" exercisers. I do it because it is good and right for my body to move, and I do not want my muscles to atrophy, because deconditioning WILL make POTS worse. That being said, I am a life-long POTSy, and a life-long exerciser: just not cardio. The HRs I see posted here look slow to me. My walking HR is in the 140s+, Lat pulldowns will send it to 180s+ and jogging...well, 220+syncope! At one time, I trained for over a year, six days a week, to try to jog; I have never broken a 15 minute mile. Even after that year of training, it was not a constant jog...more of a jog till I can't see then walk and hope I don't hit a mailbox till my vision comes back.

My former primary doc (he was picked up by Mayo) would not approve me for a gym membership, I have to have monitored exercise. I tried to get him to let me do the "Nasty Green" Protocol from Texas, but he said, "As your doctor, I am telling you NOT to do this." For three years, I have exercised weekly with a PT doing Pilates. It sometimes takes up to a week for me to recover from the pain, extreme fatigue and muscle weakness that occurs. She says that I am stronger than the average person, but only for a few reps, then the muscles stop working and will not do more. Every doc I ask just throws that into the POTS bucket, so no explanation.

I used to be more active: over a decade of Martial Arts, two years of weight-lifting, several months of building stone walls... But through all this, my HR has never come down. I used to think that your target HR was 220-your age, because I'd hit it consistently every time I'd walk on a treadmill...I still do, even on a BB.

Does exercise help? Yes, but it hurts too! There is no "one size fits all" cure or treatment for this conglomeration of illnesses that is called POTS. Exercise helps, in moderation, just like eating right and getting enough sleep.

Take a jog for me, knowing that you are doing something that I have only dreamed of doing. I'll wave as I drive by!

[potsgirl]

What is the 'nasty green' protocol from Texas?

Also, when I exercise, I find that my BP goes lower and that my HR stays about the same or also goes lower...? Anyone else?

[firewatcher]

"What is the 'nasty green' protocol from Texas?"

I refuse to degrade POTS with a cartoon (Seussian) name.

My heart is plenty big!

[corina]

Jana, I have the drop in hr too (haven't measured bp so don't know what that does but expect it to be lower). My cardio told me that the drop in hr is done by the heart to protect itself. There isn't enough blood for the heart to work with so it drops in rate. I think it makes sense to me as I'm assumed to have low volume.

[issie]

What is the 'nasty green' protocol from Texas?

Also, when I exercise, I find that my BP goes lower and that my HR stays about the same or also goes lower...? Anyone else?

Yeah, Jana - that's what mine does. My bp went really low - for me - when it is mostly really high. When there is that extreme of a drop from high numbers - you don't feel good. But, my hr does go up when it drops. When your bp drops - your hr should go up to pull it back up. Have you asked Dr. G about it?

Issie

[AllAboutPeace]

I thought I'd try exercise to see what that would do, but I'm really having a lot of difficulties. I hear so many have amazing results with it, but I'm really failing here. Why can't things be easy? lol

If anyone has any suggestions on what I should bring up to my doctor, please PM. My docs are clueless...

Thanks Issie for worrying about me. LOL The funny thing is, is that my heart so far is working perfect... The lady who did my echocardiogram said they could have used my images in medical textbooks for what it should look like. haha

Dana,

I have failed miserably with exercising, so I totally hear you on that one!

I would end up on the floor unable to lift my head up for at least an hour after 15 mins on a recumbant bike (that was after building up to that and going at an easy pace). I was trying to push my heart by attempting to reach the target rates (while in a recumbant position). Anyway, what I learned - probably the hard way- is that my body is definitely not ready for that and *eventually* I listened to what my body was trying to tell me (instead of what my stubborn brain wanted to work).

So, I changed my strategy completely. I started doing shorter sessions, more often on the bike (2 mins) keeping my heart rate as low as possible At first that meant pedaling very slowly. My goal was just to help with circulation without stressing my heart. I started noticing that after those short sessions, my heart rate would be less reactive (not jumping as high as quickly), so I started doing that 5x/day so that levelling effect would carry through. I had absolutely no setback issues with this and it really seemed to help settle down my heart. I had been having nasty rhythm issues prior to that. I very slowly worked my way to four mins/5x day now. It doesn't sound like much but it has helped to increase my overall energy level and lightheadedness.

When you were mentioning your high heart rates with standing, I was wondered if this type of strategy might have a similar settling effect for you. I hope you find something that helps.

[Birdlady]

Thanks for all of the suggestions! It does seem some of you have an easier go at this than others, which I'm envious of. If I were to hit 200BPM while exercising, I'd be in bed for a week which would completely cancel out any benefit I got from it. Spending an extra 100 hours in bed seems counter productive.... HA!

[issie]

Yeah, I have to take it pretty slow - I'm not that fast with what I do - I have to pace myself and do it in increments.

Issie

[anna]

I can not do cardio stuff without blacking out, I have been exercise intolerant since childhood, always did exercise was an acrobat, gymnast, could do floor work, but I could not for the life of me run more than 100m on a slight incline without nearly passing out. I have to say I wish Dr.'s would take on board that POTS is just an umbrella term and that it has lots of different causes.

I have normal to low blood pressure supine/sitting but high to dangerously high on standing even with BP meds, Now when I do normal exercise not pushing cardio too much I am fine then when my exceed my limits my systolic and Diastolic rise rapidly (only systolic should rise during Aerobic exercise) not a good feeling really.

But my GP does not get it and tells me I need to be doing a good cardio workout!!!

[Annaliese]

That's excellent jangle. Congrats. Just want to warn people to take it slow though. I suspect my dys is AI as it started suddenly. I started an exercise regime but did too much one day and woahhh, just like that i was 10 times worse. Has taken 18 months to get back where i was. I think the exercise was perceived by my body as a stress event and caused a retriggering of my AI issues. I restarted exercise-This time i began at 2 mins and then incremented every two weeks. I think exercise might not help some people's OI though- the yellow wiggle was super fit and still had pots. Nonetheless people like the yellow wiggle would still benefit from exercise in other ways- eg its as good as antidepressants (if not better) at making you happy : ) Thanks for your uplifting story jangle.

[sarahm]

I just went to see my POTS dr and he said there is a new study that compared exercise to beta blockers and exercise was better. It has done wonders for me as well. I started extremely slow. I was so weak I could barely walk, and did most of the exersices in bed. Then moved on to the exercise ball. Now I can go to the gym to lift weights, etc. and I take a walk every day. I will be starting in a cardiac rehabilitation program at the end of May and I am excited about it. I was very active before getting POTS, I even played college soccer. So exercise is important to me, and I am hoping to eventually get back to where I was.

[jangle]

Yes sarahm, the study your doctor was referring to was the one done by Dr. Levine a while ago. It is slightly variable how much time is required before you start seeing meaningful results, for me it was ~3 months. For TXPOTS it was many months and it took her 18 months to fully recover.

But I do have to say that walking didn't help me, it was only when I began jogging and jogging fairly long distances that I started to improve. TXPOTS was running 8 miles 4 times a week. Right now I'm running about 6 miles 4 times a week + all the other fun fun in the sun workout stuff.

[issie]

Jangle,

I'm glad you are doing so well. I'm envious of your success. I'll never be able to run with my EDS and other issues - but, hoping for a little more stamina and endurance - I'm still working at the elliptical and hoping to add a few weights in soon. Thanks for your fine example and encouragement.

Issie

[ramakentesh]

The only way to confirm the statement that exercise is the best treatment is to have tried them all. Most here would have. The second point to consider is that often the only thing some of us have in common is standing tachycardia. What helps some may not help all, although the preliminary work by Dr levine is impressive and he seems to think it is beneficial in all cases.

personally, early on when I got POTS i found it quite helpful. Unfortunately for me it didnt protect against relapse.

[POTLUCK]

Do you think there is any other thing that would be as beneficial as jogging? I just hate it so much, and I could not imagine going five miles. I love swimming. Would that work? So happy you feel good!

The doctor I see for POTS specifically recommended swimming. I had asked him about running. I was a runner in the far past and hiker before I got sick in 12/09. The doctor's said many people find the water provides support/compression while exercising. I personally do not like swimming as well.

[POTLUCK]

Jangle- Your exercise program is inspiring and I am glad you are doing so much better.

I have started a low level cardio workout myself by mixing up running and fast walking several times per week with my plan being to increase it as much as I can without overdoing it. I am on Inderal 80 BID. I plan to try and cut the Inderal back a little if I can lower my resting HR as time goes on. ( with my doctor of course )

[Elfie]

Firewatcher-- I've experienced similar to what it seems like your describing. I'm still stronger than the average woman, but instead of gradually fatiguing (normal, pre-POTS), my muscles go and then just won't fire to do another rep. I also plateau big time when it comes to lifting weights, ect---- where I gradually increase strength and then randomly it will stop and I just can't do any more--- almost like I have a muscle I've over-worked or fatigued . . . .but even with rest it doesn't recover.

I also have times (when I'm feeling less potsy, usually) where I can lift significant amounts of weight many many times with no problem. Other days I have issues being able to physically pick up a gallon of milk, both because of symptom triggers and just physically not being able to.

When I got POTS I lost a significant amount of muscle, despite most of that muscle being "natural" (i.e. just from my life, stuff I normally had on my frame, not from weights, ect). I didn't change what I was doing--- but it is almost like I was chewing up the muscle and it wasn't rebuilding fast enough to keep up with me.

Similarly, when I have a good POTS day, I can run for long distances and sprint fairly quickly, go hiking above 10,000 feet all without being short of breath, so I know cardiovascular wise I'm in decent shape.

[jenglynn]

Jangle,

I've said so many times here how inspiring you are. And I love the fact the came to the board to share your success. You put that much hard work, your whole tachy heart, and persistence- most people could succeed at anything.

My question is this: Are ALL forms of POTS "cured" with exercise and does it take it away forever or do you have to continue the exercise forever?

I know whenever I say this- I probably get lots if eye rolling and "whatever's". In the state I am now, I could not walk from my bed to the door. I've tested this theory by the way- more than once- and after so many concussions, preventing future brain damage is top priority. I do wear a helmet but can still get damage. I feel completely disabled. I'm still having 5+ syncopal spells a day at Keaton. This is crawling or even wheeling my rolling walker with the seat. I have to force feed Abd drink. Bladder is non functional. Kidneys are only at about 40%. Thyroid is completely out if whack but no one worries about that. Im extremely hyper if you look at my TSH- .02 and T3 and T4 are hypo. It's crazy. And I've lost about 50-60% of my hair I could go on and on- but the type of exercise, or even the ones who "take it slow'' is out if the question- for now. I do leg exercises in bed and arms w/ resistance bands. Right now, I'm in a very nasty relapse. I can't do hardly a thing.

I can't even get out the door for the last several days. Do you any suggestions for someone like me? Have you ever seen someone in my condition get better with exercise? My only rule is no head injury risk. I can't take chances there. Not with the dysfunction I already have.

Thank you again for taking the time to update. You and others like you on the board ( Lemons, Issie, etc..) do so much for raising the hope of those of us who can't even imagine being at that point. I'm do proud of you guys!!!

Jen

[issie]

Jen,

Sorry to hear that you are still so bad - was hoping some good news from you.

I'm impressed that you are trying to do exercise while in bed. That will help you from totally losing all your strength. It's so hard when you are as sick as you've been. I hear of others that are so much worse than I am and they still are trying to push ahead. You inspire me - to keep hanging in there and never to give up the fight.

Issie

Oh, POTLUCK -----I love to swim and I'm hoping to go swimming next week - it is finally hot enough here to get in the pool.

[jangle]

Jangle,

I've said so many times here how inspiring you are. And I love the fact the came to the board to share your success. You put that much hard work, your whole tachy heart, and persistence- most people could succeed at anything.

My question is this: Are ALL forms of POTS "cured" with exercise and does it take it away forever or do you have to continue the exercise forever?

I know whenever I say this- I probably get lots if eye rolling and "whatever's". In the state I am now, I could not walk from my bed to the door. I've tested this theory by the way- more than once- and after so many concussions, preventing future brain damage is top priority. I do wear a helmet but can still get damage. I feel completely disabled. I'm still having 5+ syncopal spells a day at Keaton. This is crawling or even wheeling my rolling walker with the seat. I have to force feed Abd drink. Bladder is non functional. Kidneys are only at about 40%. Thyroid is completely out if whack but no one worries about that. Im extremely hyper if you look at my TSH- .02 and T3 and T4 are hypo. It's crazy. And I've lost about 50-60% of my hair I could go on and on- but the type of exercise, or even the ones who "take it slow'' is out if the question- for now. I do leg exercises in bed and arms w/ resistance bands. Right now, I'm in a very nasty relapse. I can't do hardly a thing.

I can't even get out the door for the last several days. Do you any suggestions for someone like me? Have you ever seen someone in my condition get better with exercise? My only rule is no head injury risk. I can't take chances there. Not with the dysfunction I already have.

Thank you again for taking the time to update. You and others like you on the board ( Lemons, Issie, etc..) do so much for raising the hope of those of us who can't even imagine being at that point. I'm do proud of you guys!!!

Jen

Certainly I can say that probably not all forms of POTS can be cured with exercise alone. TXPOTS hasn't relapsed, she took her exercise regiment down from what it used to be. As for me I'm still going full tilt so I won't be able to respond on my case. Rama relapsed despite exercising.

It's variable certainly I don't know what to ultimately say other than in general it seems like exercise improves people over the long term and really that's good enough for me and I'm sure everyone here!

You are an inspiration as Issie has said, but certainly I hope the doctors find something A LOT better than exercise alone for you. I'm talking some actual hormone/antibody/or some other physiological thing they can correct and get you better soon.

Hang in there

[abbyw]

Jen- I am so sorry to hear how bad you've been. I think its great that you exercise in bed and I think it can only help prevent your becoming deconditioned. I hope and pray that you and your doctors find a way to help you!

I wanted to chime in, that with Jangle's inspiration, I have been walking vigorously for 20-25 minutes every day. It has been around three weeks now. I know that you think jogging is the key here, but I am definitely getting stronger. I should note, that while I am not jogging, I am walking fast enough that I am breathing heavy and sweating. The first day or two, I was wiped out for most of the day afterwards. Then, I moved on to an hour or so to recover, but functional throughout the day, with chest tightness on and off throughout the day. Now, that has mostly gone away. I guess that means it is time to take it up a notch .

I am still on my meds, obviously, but I am hopeful that if I keep up a daily exercise routine, I will get the blood flow healthy enough to attempt weaning myself off. I am getting myself an elliptical in the hopes that I will be able to beat this thing. I know that we are talking months away, but I am being optimistic.

[firewatcher]

"My question is this: Are ALL forms of POTS "cured" with exercise and does it take it away forever or do you have to continue the exercise forever?"

The anecdotal answer would probably be no, and yes, you have to exercise regularly for the rest of your life. Exercise can TREAT POTS, but it is not the CURE in some cases.

I follow a POTS blog and this woman was a huge promoter of the exercise protocol; she relapsed when she stopped exercising. She also ended up having MCAS and having an anaphylactic reaction during exercise. Dr. Levine has been looking into the difference between fainting during and after exercise, and he states that there is a BIG difference (http://www.ncbi.nlm.nih.gov/pubmed/22386295 .) I am one of these; I don't get syncopal until I exert myself.

He is also studying how to best treat forced, sedentary rest. This is from his latest article on it, and may help you:

J Appl Physiol. 2012 Feb 16. [Epub ahead of print]

The Effect of Rowing Ergometry and Oral Volume Loading on Cardiovascular Structure and Function During Bed Rest.

Hastings JL, Krainski F, Snell PG, Pacini E, Jain M, Bhella PS, Shibata S, Fu Q, Palmer MD, Levine BD.

Abstract

Objective: This study examined the effectiveness of a short duration but high intensity exercise countermeasure in combination with a novel oral volume load in preventing bed rest deconditioning and orthostatic intolerance. Background: Bed rest reduces work capacity and orthostatic tolerance due in part to cardiac atrophy and decreased stroke volume. Methods: 27 healthy subjects completed 5 weeks of -6° head down bed rest. 18 were randomized to daily rowing ergometry and biweekly strength training, while 9 remained sedentary. Measurements included cardiac mass, invasive pressure-volume relations, maximal upright exercise capacity, and orthostatic tolerance. Prior to post-bed rest orthostatic tolerance and exercise testing, 9 exercise subjects were given 2 days of fludrocortisone and increased salt. Results: Sedentary bed rest led to cardiac atrophy (125±23 vs 115±20 g; P<0.001), however exercise preserved cardiac mass (128±38 vs 137±34 g; P=0.002). Exercise training preserved LV chamber compliance, while sedentary bed rest increased stiffness (180±170%, P=0.032). Orthostatic tolerance was preserved only when exercise was combined with volume loading (-10 ± 22%, P=0.169), but not with exercise (-14 ± 43%, P=0.047) or sedentary bed rest (-24 ± 26%, P=0.035) alone. Conclusions: Rowing and supplemental strength training prevents cardiovascular deconditioning during prolonged bed rest. When combined with an oral volume load, orthostatic tolerance is also preserved. This combined countermeasure may be an ideal strategy for prolonged spaceflight, or patients with orthostatic intolerance. PMID: 22345434

[futurehope]

My two cents from talking to Dr. Levine's nurse....

I'm not convinced that you have to be increasing your exertion to achieve success, i.e. by jogging for farther or for longer or by choosing a more strenuous activity. I'm under the impression that once you've graduated past the three month Levine exercise program, the key is to continue doing something.

The something is what you feel most comfortable doing and continuing to do. The key is, one may continue to see improvement past the three months. As a matter of fact, you may continue to see improvement as time goes on into nine months and beyond. But the impression I got from talking to the nurse is not that I must increase the strenuousness of the activity past the three months, but that I must continue something past the three months, because it might take different amounts of time exercising for someone to see results. IOW, it's the length of time one has been exercising that is the key to seeing improvement.

That's the impression I got anyway, as I did not hear the nurse say anything to me about increasing my exertion by jogging, or by jogging more miles, after the three months is up. Nobody is stopping me from doing that, but I did not think she said it was necessary. It was the continuation of an exercise routine that was necessary.

I was given a sample additional 3 month program (to be used after the initial three months), that I could follow. But she said that the choice of what I did was really up to me and my likes and dislikes.

[issie]

I don't know about Dr. Levine's program but my husband was telling me about something he recently read and it basically said the same thing. He said that the study said that you could do exercise in short burst - but, more often and it was the continuing of it that was important. So, my 5 minutes 6 times a day goal - is a good one. That will give me a total 30 minutes for the day. But, if I can only get 5 minutes at a time - that's better then no minutes. If you can only get 2 minutes or even 1 minute - that's better then no minutes. And then add in more segments. I'm not there yet - but, working on it.

Issie

[roxie]

I'm backed up on reading this thread, meh

Issie, that's exactly what my physio told me "you'll accomplish more doing small things & taking breaks"

I am working towards 5 mins every two hours but really I more 2-2 1/2 mins every hour. Seriously, there are times I don't want to get up but i keep pushing through.

Another thing & he only has me doing it two times a week. Is 2 mins, rest 1 min, two mins again