I Really Believe Exercise Is The Most Effective Treatment Currently.

[issie]

Maiysa, issie, don't you just love Janie, Dr. G's nurse. I swear that poor woman. Every time i talk to her something ridiculous is going on!

Yeah, she is great and so patient with us. She knows how miserable we are and wants to help us as much as we want the help.

Issie

[Maiysa]

Lemons, Janie is the best!! Whenever she calls, she laughs and asks, what strange things are happening now? Also, if anyone has netflix, there is a video on there called Healing Yoga for Aches and Pain. It is soooooo helpful. It's all modified Yoga. But if I do too much of it in one day, I get a bit sore, but that's all new for me. My joints are a mess right now. But I swear by this DVD. And also just riding my stationary bike for a just a few minutes helps a lot. But I have yet to find an exercise for my arms, they are getting so flabby. I used to have nice muscles, now they have vanished into thin air. I even bought half pound weights and my neck swelled up. Ugh.... Any idea

[issie]

Arms are hard. In the summer I have a paddle board and work my arms in the pool with that.

Issie

[CC101]

Jangle, I have seen so many testimonials on numerous sites on the benefits of exercise for POTS patients and I am surely going to get me a regimine going. I found an awesome site for beginners in which the first week includes only stretches to prepare your body. (is targeted for children as well). The PDF's I downloaded have a calender you can print out and follow. It seems like the perfect workout for us POTS patients so I really want to share it with everyone. It brings you slowly up the scale and I think it will be very effective. I just found it, so I am only in the first week but I Will definitely report back on my results. I will post the site, as well as the PDF's I downlaoded below =) I think and hope that I will be highly reccommending them!

Site:

http://www.stewsmith.com/iframe.htm

Free PDF's:

http://www.stewsmithptclub.com/parentkidsworkout.pdf

http://www.stewsmith.com/45dayplan.pdf

[Anoj]

i agree with all that exercise does help. i was in a PT program that ended and recently went back because it helped me so much.

[jangle]

Yes, I just want to reiterate the general sentiment to take it easy. Please don't try to do say 30 minutes of jogging your first go. I didn't do that, I took everything as according to the pace I could do at the time. I believe that is the best way to go, because that allows your body to acclimate and that is what you want, you want to get your body adapting its nervous system etc.

Also, fun note: exercise induces excretion of something known as brain derived neurotrophic factor, which contrary to its name actually has potent effects outside the brain in the peripheral nervous system - which might help in some way that I'm not sure of.

[CC101]

I 100% agree Jangle. Taking it slow and working up at your own pace is CRUCIAL to us POTsies =)

[Birdlady]

What heart rates are you guys reaching while exercising?

[Monstrosity]

What heart rates are you guys reaching while exercising?

The last few times while doing cardio I was around 120-130. I try not to take it past that.

[Elfie]

I hate to be the naysayer, but I'm not sure it works for everyone. Over the course of 2 years I built up from swimming, water exercise, and recumbent biking to vigorous hiking (constant climbing), weightlifting, and some jogging. Even after 7 months of the vigorous activity 3-5 days a week, with decent activity levels on the days off, I still had bad POTS symptoms. Sure, I was more fit, but it didn't impact my dizziness or how I felt or improved my functioning when standing (dizziness, fatigue, chest pain/SOB, and cognitive/balance-type issues are my worst symptoms, all related to low bp). I was still just as bad POTS-wise, unless climbing up the side of a mountain. For me, my symptoms seem to be more impacted by stress than long-term strenuous exercise.

[jangle]

Elfie ask your doctor about boosting your jogging periods. It wasn't until I got to about 50 minutes of continuous jogging that I noticed my dizziness and lightheadedness go down. TXPOTS mentioned to me that the stair master helped the her a lot and I intend to start that tomorrow.

[issie]

Jangle,

The stairmaster can be really hard on your knees. My hubby and I both prefer the eliptical and you can push hard on it too and it won't hurt your knees. If you do decide to do the stairmaster - don't lean on it - make sure you keep good posture and you won't get as good a work out if you lean over on the handles. My hubby is a stickler for form and doing things right. (He's a body builder type and also does some power lifting. Really into exercise and the body dynamics.)

I was talking to hubby about you and your doing squats. He said that you can do the leg sled too. That works almost as much - you just don't use as many stabilizing muscles (balance). But, you can get a good leg and butt workout with it. You can sit to do it too - so, if you're having a dizzy day - another alternative thing you can do.

Issie

[corina]

I love exercizing I think I've said that often enough. Still I know it isn't for everybody no matter how hard we try. There are some of us that really can't make it to work towards 50 minutes of jogging. I've been there myself and tried VERY hard. After I was on a well working combo of meds I could slowly build up but even now (1,5 years later) I def can't do 50 minutes of jogging. I'm perfectly fine with that, I'm happy I came this far and I keep trying cause exercizing makes me happy. But I do feel I need to say this as I remember how sad I felt when statements like yours were made in the past Jangle. No matter how happy I was/am for everyone who is doing better on exercizing I know it isn't for all of us. I'm sure you'll understand

[Dizzysillyak]

Congrats jangle. Any improvement is to be applauded.

I noticed walking clears my head too. Fwiw, it seems to take an hour for me to notice this.

Up until then, my body is struggling. I started out with hour long walks because I was with family

at the beach, but I crashed. I want to see if going slower will help.

fyi tho. I can't even run a few feet without my brain and body getting confused. I really can't quickly put one

foot in front of the other at that point. I can walk tho. I couldn't walk normally (ataxia) for

16 1/2 years so I'm not surprised tho. I can't do any exercises fast or even at a normal pace tho. My

muscles

don't recover like they're supposed to. I'm not allowed to do the treadmill heart test.

imho, some of us may have damage that will stop us from exercising strenously. Whether it's brain, heart, mitochondria,

etc problems, doesn't matter. We've been grouped together because of hr and bp problems.

Tc .. D

[jangle]

I love exercizing I think I've said that often enough. Still I know it isn't for everybody no matter how hard we try. There are some of us that really can't make it to work towards 50 minutes of jogging. I've been there myself and tried VERY hard. After I was on a well working combo of meds I could slowly build up but even now (1,5 years later) I def can't do 50 minutes of jogging. I'm perfectly fine with that, I'm happy I came this far and I keep trying cause exercizing makes me happy. But I do feel I need to say this as I remember how sad I felt when statements like yours were made in the past Jangle. No matter how happy I was/am for everyone who is doing better on exercizing I know it isn't for all of us. I'm sure you'll understand

Yes I understand, I don't want to incite frustration as I'm not sure I could even really tell the extent of pain that causes. But please don't feel like you're being left behind at the train station sort of speak. There are an infinite number of paths to a point and likewise there are many different ways to get to a state of wellness.

But I do want to help people begin and undergo their exercise regiments because there just isn't a lot of information out there on recovery. There's not a lot of information period, but certainly not a lot of information on recovery. TXPOTS is ultimately what convinced me that yes it is possible to get better and she no longer comes to these forums anymore and so it might be easy for people not to notice what she did. I'm not quite where she got to yet but certainly there needs to be role models to serve as information sources and inspiration for others.

[corina]

You're right Jangle and I'm glad you're that role model and so inspiring to all of us. Just felt the need to let you (and others) know so that none of our members who can't do the exercizing (for whatever kind of reason) feel left out. I do love your inspiring attitude, keep up the good work!

[Elfie]

Elfie I would recommend boosting your jogging periods. It wasn't until I got to about 50 minutes of continuous jogging that I noticed my dizziness and lightheadedness go down. TXPOTS mentioned to me that the stair master helped the her a lot and I intend to start that tomorrow.

I appreciate the advice-- I used to be a runner, but I struggle with it now. I'm in pretty good shape cardiovascular-wise (I recently out-beasted a friend that is a regular runner and has to pass stringent physical fitness tests at work, and I felt good doing it), but if I don't find the perfect pace and keep my heart rate in just the right range for that particular day, my BP tanks and each day is different. Too slow/not doing enough uphills and it'll tank-- too fast or too hot or too long and my BP will tank. Also, I find the logistics difficult because if I've been running or hiking hard, even if I'm feeling good ATM, if I slow or stop in any way I'll often get an instant drop in BP and will faint--- which is dangerous on the trail, the road, or the treadmill. I went hiking with a friend and was behind him coming up a strenuous part of the trail (like climbing up 2ft high stairs-- several flights), he paused as we crested the top and I couldn't get around him to keep going. Before I could even tell him to "Move it" -- I went down. I've had that happen when I tried to get off of a treadmill (it can happen even when you slow gradually or cool down) or when I've had to stop to tie a shoe (even sitting or squatting). If everything isn't perfect, my vision and balance and coordination get wonky and I can't read terrain and feel like I'm running on a boat and will fall or bounce off of things or twist an ankle-- I have ended up with treadmill faceburn before.

I also struggle with constant hyperventilation when I have low bp-- which means jello muscles because of inefficient breathing, despite trying to control it.

I know I'm in good shape because on a good day I can lift 100s of 50 l.b. boxes, run a couple miles, ect. I still can't stand or walk slowly or sometimes even sit without symptoms. On other days walking with a 10 pound backpack makes me so short of breath and dizzy, and I've fainted trying to get a gallon of milk out of the fridge.

[peregrine]

Jangle - any lower impact options for those of us who aren't supposed to run or do stairs due to joint issues? I'm excited by your progress!

[jangle]

Ask your doctor about exercise,

The elliptical is ok certainly, but make sure to set the resistance level fairly high so that it feels like jogging. Since you're essentially gliding you won't have the impacts on your joints like jogging causes.

Also a good strategy is to not do just one type of exercise, mixing things up allows the relevant regions to regrow. On that note, giving yourself breaks is a good idea. Starting off I averaged probably 3-4 workout days a week, so I wasn't working out 7 days a week.

[Birdlady]

I must be overdoing it if you are keeping your HR in the 120's. I'm hitting 170's easily. What worries me with this, is that my standing HR's are into the 140's. There's no way I could jog and stay in the 120's while exercising... I'm not on any medications for POTS, so that probably explains it.

Jangle, I also find it interesting that squats are good for you! wow...It shows how different we all are! Standing firm in one place and then squating causes major issues.

Sadly this week has not been good at all and I hate to say it, but it correlates with when I added in exercise. I'm taking a week off and starting over again to see what happens. For me I have to do sitting exercises without much resistance and no postural changes, otherwise my HR hits 170+ while exercising. That always causes a major crash for me. It might take a few days but it always happens.

[issie]

Dana,

You just might have to break down and try a different med. I know you don't like what it does to you - but, that hr is way too high. There is a person who went untreated and she is on the site sometimes and didn't treat her high hr and bp for about 20 years and now she has had 2 heart attacks and is not at all good - in fact, there is so much damage they are not sure of what her prognosis is. I wish she would go on the site and tell people how bad she is and what untreated POTS can do - it can be deadly.

You worry about me - but, I worry about you. Hon, try something different. That clonidine really did bring my bp and hr into a more stable place. Since, I've been off it for a few days now - I'm really noticing the difference. I know, you and I neither one like traditional meds - but, sometimes we have to do them when our "natural" stuff doesn't work.

Jangle,

I love the eliptical and I have EDS so can't pound my joints. Mine is a gym model. Have a friend that owns a couple of gyms and he decided to get some new equipment and wanted me to feel better - so it's a really good one. I can set it for climbing hills or just flat walking - it will do programs of different levels of intensity. I prefer it over a stairmaster because it's not so hard on jarring.

I think sometimes, we have to be on meds to be able to exercise. I know Jangle got on some meds and a good many others have to be on something. If it helps us to get into better shape, sometimes we have to do it. Whatever, will help us to have better quality of life. I know lowering my bp and hr made my tacky issues so much better - but, it did make me more dizzy and tired. We just have to decide what is worse and which thing is doing less harm/or more harm to our body. I'm still having to lay off the meds - the edema is better but feet are still pretty swollen. So, don't know yet - what's going on.

Issie

[Birdlady]

I didn't want this to get too off-topic, but I just wanted to put my struggles I've had with exercise.

I fear clonidine isn't going to work because my BP is low normal to normal despite having high norepinephrine and HyperPOTS symptoms. I took my BP at my parents house today and it was 102/75 HR 62... Which is pretty low for me. I was a little shocked at both the BP and HR actually...haha

When I stand up or do exercise and I get 80+ BPM increases in my HR. It's not pleasant, but I'm not really sure what to take. Nothing has been good for me thus far, so I just went au naturale a few years ago. Even on beta blockers, florinef, DDAVP and midodrine, I was routinely hitting 160. That's why i quit everything. I figured why be on these meds if I'm no better.

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

[Lemons2lemonade]

Dana since you are having such large hr increases on standing maybe that's where you could start. Just trying to stand for a period of time each day. Perhaps you could talk with your doc about this. If that's too easy maybe walking for 5 min or so each day. I felt that I had to start low--really low and work my way up.(this began 8 months ago by flexing my leg muscles in a hospital bed--that was what challenging was for me at the time) Don't over do it. As far as meds, just be sure you are giving them adequate time to work, many take some time to start seeing effects. I didn't see ssri on your list, is that something you have tried? When I started my ssri, my hr started to slow down tremendously--it was a godsend. It also helped me sleep at night. For awhile there I was getting 1-2 hrs or less a night. It was terrible. But I couldn't sleep- too much adrenaline. Also, having constant high hr or blood pressure can create turbulence in your blood leading to atherosclerosis. I also looooooove my compression socks

[issie]

Dana,

I have weird bp's too - like today when I was exercising - I started feeling faint and sat down and took my bp (without meds) and it was 90/70 - most of the time it's like 156/100something (It has been higher than that). My bp can change drasticly in a matter of minutes. It's all over the place and my hr is always over a 40 point jump from sitting to standing. When I was on the clonidine - even after exercise it was more in the normal range with both the bp and hr. It seemed to level me out more. I didn't have the great swings in either direction - with either hr or bp. I was only on the clonidine for 2 weeks before they told me to stop (thinking it might be causing my edema).

I'm glad your heart is in good shape - but, you want to keep it that way. My husband says with such a high hr - our hearts should be athletic because - it's like we're on a treadmill all the time. It is getting a workout every time we stand or move. Makes sense - it's a muscle and it is working a whole lot. It just doesn't feel good and my body feels like I'm working out on a treadmill all the time (tiredness) but, without getting the full body benefits. I think I need the full body benefits and not to just have my heart working out. LOL

Issie

[jangle]

Ask your doctor about exercise,

Dana you might want to try the elliptical, I notice my HR is an average of 20-30 bpm lower on the elliptical than during jogs.

That's weird that you have a much worse reaction to having high hr/bp than I do. I was routinely hitting 200+ bpm during my exercises and I wasn't getting the crashes you were describing. I don't write this in the sense of contradicting your experience but rather just acknowledging that POTS has a heterogeneous presentation. I wish I could figure it out and explain why people get those crashes and others don't, but I feel like there isn't enough data out there to make a meaningful conclusion from the observations.