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Posts posted by volo

  1. Exercise has helped me feel better, but it has certainly not cured my POTS and whatever the underlying cause is. After exercising regularly for about 4 months - a similar amount to what you are doing - I adding intervals to my exercise routine. That gave me an additional boost so that I felt better more of the time. Previously, I was following the Levine protocol.

    I do intervals on a recumbent bike: warm up, then alternate 1 minute high resistance, 1 min low, 10x (total of 20min) then cool down. On the high intensity I go to about 90% of max HR (closer to 100% on the final intervals). I cut back on my exercise if I feel unwell, with dizziness or weakness.

    I don't think there is research yet on interval training for POTS, and I would always advise to listen to your body. I speculate that taking my HR up and down in such a controlled way helps me a bit more, beyond what the Levine program was doing.

  2. Hi cupcakemomma,

    I had my TTT done at Hamilton General. They did use an IV line, for drawing blood samples at various stages of the test, for injections to test alpha/beta receptor responses, and to give me saline after the test. I was not on medication prior to the TTT. I was asked to fast, no water except for tiny sips if needed, from midnight before the test.

    The staff were all very kind and helpful and explained each step. I had expected to feel much worse after the test, but I think the IV saline helped a lot. The TTT results suggested some particular kinds of medications for me which worked, so I consider the test a positive turning point in my illness. I hope it turns out to be as useful for you.

  3. I had my autonomic testing done at the Hamilton clinic and suggest that you keep that appointment. From what you write, I think the Hamilton clinic does a more thorough TTT. It typically lasts 15 minutes, unless you pass out earlier, and it also involves blood work so you don't get the results immediately. Even mild autonomic dysfunction can lead to strong symptoms, so I think it is best to find out for sure whether you have any autonomic dysfunction.

    Any exercise you can do is also very good. Just start where you can and try to work up slowly from there.

  4. I'm sorry you are having such a tough time. Just consistently doing what you can with exercise or even just with moving and/or doing things, and trying not to overdo it, is what worked for me. Maybe what you can do at PT before you become fatigued is a starting point. When I started, I felt like what I was able to do couldn't possibly make a difference in my fitness. Well, it probably didn't make a difference in my fitness, but it was a starting point for slowly building up more stamina and it did eventually lead to me being able to do things that do affect my fitness. I hope it will be the same for you.

    Over a period of 6 months, I was able to slowly build up from exercising in bed by lifting my arms and legs (first without weights and then with weights), to a minute on the recumbent bike at low resistance, to now being able to really exercise.

    When I overdid it, I'd have several days where I couldn't do anything. I learned my boundaries and slowly built from there. The starting point, the time frame and where one gets to, may be different for everyone and some here have said they benefitted by "pushing through" even when exercise made them feel worse. However, I rested when activity made me feel worse, rather than pushing through. That resting, learning my boundaries, and consistently doing what I could do without making symptoms worse and *very* slowly building up from there, worked for me.

  5. I'm happy to hear you are doing well, Potluck. Thanks for posting an update.

    How much do you think you need to run each week to keep feeling as good as you can? And how many days per week?

    I'm curious because I think cardio and weights helps me a lot. I'm also slowly increasing my work hours and concerned about cutting back too much on my exercise. I do 45-60 minutes, 6 days per week, of either weights or cardio, plus walk briskly for another 45 minutes every day. I won't be able to maintain that when my work hours increase and I'm wondering how I will feel.

  6. Welcome to DINET, Ashley. Sorry to hear that your symptoms caused the loss if your job and in such a terrible way. It's understandable that you'd have a lot of emotions surrounding that. To address some of your questions:

    1. I didn't get dysautonomia until my 50's and I never had dark circles under my eyes, but they started within a month of my symptoms, so I think it is possible these are connected.

    2. For me, I had to drink lots of fluids because one of my symptoms was extreme thirst. Compression hose and salt help a bit, but midodrine is what helped me the most.

    3. I've found exercise was the best solution for my digestive problems. As soon as I could (for me, only after midodrine) I started walking and exercising on the recumbent bike - at first for only a couple minutes at a time, but now I can walk or exercise for an hour. I try to make sure I take more than 10,000 steps a day and since I have been doing this, my digestive problems have almost disappeared. I still eats maller meals, and add two substantial snacks to my day, and also eat lots of fiber, vegetables and fruit, and this helps too.

    4. I don't read as much as I feel I should on dysautonomia as I'm focussed on getting back to work and on doing the things I have learned help make me feel better, but I would advise to read all you can, including the material on DINET.

    5. I have POTS and am treated by a cardiologist and am happy with him, as he is a POTS specialist. However, he also refers me to other specialists for further tests as we are still looking for the underlying cause of my POTS, and I expect a neurologist will be next on our list.

    I received medication within a week of the TTT and that made a big difference in managing my symptoms. I hope things go as well for you.

  7. I have been having problems with pressure in my ears lately. Not really chronic problems. It's kindof a new symptom. Does anyone else have pressure issues. It's almost like my ears feel stopped up. Sometimes I find that POTS symptoms are so hard to describe. Does anyone else have this problem?

    I get the feeling of pressure in my ears. I've checked my blood pressure a few times when I have this symptom, and it is low (below 100/60). No idea what causes this feeling.

  8. My experience is similar to mkovens, although I don't have hypermobile joints (although I do have joint pain). I went from exercising in bed only to floor exercises to recumbent bike to upright bike and now on treadmill at 4mph with incline. This progression took 4 months for me. I now typically do 30 minutes at moderately to high intensity (about 75% of my MHR, sweating, can talk but with some difficulty) plus another 10-20 minutes on a warm up and cool down. I've started adding intervals to that, where I go to 85-90% of my MHR. I do this cardio 3 or 4 times a week.

    I also do weight training 2 or 3 times a week and that takes me about 45 minutes because I have to rest 60-120 sec between sets. I started just with lower body and abs, but now do full body, to have a more balanced body as my leg strength increased quite a bit.

    When I first started MHR meant nothing, as just sitting on the recumbent bike could get my HR up to 75% or more of my MHR, but now my HR is much more controlled. I'm also on midodrine and BB.

    Everyone is different and I am grateful I have been able to build up exercising this way and it helps a lot. But I did build up slowly and cut back whenever I had aftereffects later that day or the next day. Typically the negative effects of overdoing it are somewhat delayed for me and felt the next day. I have never tried to push through any negative effects of exertion.

  9. I don't know anything about the DNA repair theory, but when I was at my sickest, with extreme weakness, nausea, diarrhea, trouble breathing, no temperature control, etc., and had self-diagnosed myself but had not yet identified a doctor who could diagnose me, a friend (who is a doctor) told me I should just stay in bed and rest. I rested for a few weeks and gradually improved, although I still had POTS and many symptoms.

    After I was prescribed a beta blocker and midodrine, I finally was able to work up from exercising for a few minutes to exercising for an hour, over a period of a couple months. I follow something like the Levine program. I still have POTS, but the cardio and weight training allows me to do more and may reduce some of my symptoms.

    So, I think one has to balance and know yourself. When I was at my worst, I felt like rest was a lifesaver for me, but in my current improved, but still with POTS state, a Levine type exercise program gives me better results. But I never "push through". Whenever exercise made me feel worse, I would cut back to a level where it didn't and slowly build up from there, with an emphasis on slowly.

  10. So difficult to pick one. Chest pains are scary. Feeling like I don't know how to breathe is scary. Nausea and vertigo are terrible feelings. However, I choose insomnia because when I am able to get 9hrs of sleep, I typically feel much better and often don't have the chest pains, breathing problems, nausea, although lightheadedness may still come and go. However, I can't get the sleep I need without the aid of drugs which I don't like to take continuously.

  11. My HR went 20 points above my estimated maximum HR within 5 minutes of the TTT. It also went above the maximum on a stress test, even though I am on a (small dose of) beta blocker. So far, I only do cardio on a recumbent or upright bike and I keep it 15 points or more below the estimated maximum, but if I pushed all out, I'm sure I could take it past the maximum.

    From the responses, it seems many POTS patient's HR goes above the estimated maximum. On the TTT, they also measured my "intrinsic HR" and that was 20 points or more above the estimate as well. Do others know if their intrinsic HR is also high?

  12. I think building up your muscles could help you on the bike later. Also, if there is some level you can safely do on the bike without passing out, I would do that. I started with things that didn't seem like "cardio" from any definition of cardio I was used to (very low resistance on bike for very short times) but by consistently do them, I am slowly building up. For me, my heart rate gives a pretty good indication of whether I am doing too much, so wearing a heart rate monitor for all exercising works well for me. Don't know if that would help you, as maybe your issue is low blood pressure than heart rate.

  13. What kind of exercise does your physical therapist have you do?

    When I was bed-bound, I did leg, arm and core exercises in bed, as I was able, using light weights. Then when I was able, I moved these to the floor and added planks and pushups. This worked fairly well on most of my muscles. I tried going on the recumbent bike but within 30 seconds at low resistance my heart rate was over 140 (I'm 58) and I'd feel dizzy and out of breath, so I gave up on that. Now that I am on meds, I am slowly increasing my time and resistance on the bike as well as adding some exercises standing up.

    While one can't do much cardio lying down, I feel like having stronger muscles is helping me now that I am building my way up to a bit of light cardio. I did a bit of cardio lying down by just cycling my legs in the air while on my back. I think it is important to find what one can do and build from there. I don't think it is good to be passing out, so I would try to start from some type of exercise where you don't pass out.

    I certainly had the experience of exercise setting me back for days and making me sick. In those cases, when able, I just started again from a much lower level. Always looking for the level where I would be able to exercise the next day as well. When I find that, I keep that level for a week or two and then increment just a tiny bit to see if that works.

  14. I agree, Altruism, 30 min sounds really good. I can't do that long at one time. I just got up to 10 minutes, then two 5 minutes later in the day. I also do floor exercises with weights, concentrating on core and legs.

    The rule I've been using is to try to do as much exercise (and, in my condition, I include everything in that, including stairs, housework, etc., as well as floor exercises, bike) as I can such that the next day I can do the same amount. I found that too much activity in one day often set me far back for the next day or two. Once I found the amount that didn't set me back, I continued it, and very slowly tried to increment it up, with an emphasis on slowly.

    It seems others push through more, but I got so sick a few times after increased activity, that I became cautious.

  15. Just standing gets me above that recommended HR too.

    I find this link very interesting, because it is close to what I did when I knew I had POTS but didn't have a diagnosis or treatment yet. I learned that my symptoms worsened when my HR went over 135 or so for any extended time, so I tried to do whatever activity I could below 125 bpm (which meant I sometimes hit 135, because my HR rises rapidly with any exertion, but I would only hit it briefly).

    That meant I could do weight exercises on the floor, if I rested between sets. I could use a recumbent bike for about 10 minutes at a time by pedalling for 45 secs, resting for 30 secs or so, and repeating. I could walk for a minute at a time, or do a flight of stairs, then rest and repeat. I think it helped a bit, and it meant I wasn't bedridden the next day as I usually was when I did more and let my heart rate get higher.

    Just a few days on meds, and so far it seems I can do more now. But, from my past experience, I am not going to take any big increments - just build up slowly on activity and see how it goes.

  16. Your experience, chaos, reminds me of my own. My concussion symptoms morphed into POTS symptoms (there's overlap if you aren't tracking heart rate). After 3 months, I thought daily walking was one ingredient to recovering from the concussion. I was surprised my heart rate was so high, but it wasn't that extreme (about 120) so I continued on. I never thought to check my HR while simply standing still. But after a couple weeks of walking, starting with 15 minute walks and having worked up to 30 minutes, my heart rate starting going all over, up to 180 just waking at a modest pace, and my symptoms got much worse. I ended up in bed for a couple weeks, feeling so ill and weak. The only thing that kept me out of ER is that I had already been there twice and both times they said it was anxiety.

    Whether the walking was too much or I was going to get much worse in any case, I don't know.

  17. I believe in use it (if you possibly can) or lose it too.

    Wishing, it certainly is complex. I hope you get answers from Cleveland.

    Katybug, yes, I'm hoping my knees will improve with more activity as I am able to be upright more. So far, my heart rate has been too high even for using a recumbent bike more than a minute at a time, as just sitting on it was already about 110 and it increased very quickly with any activity. Just started bisoprolol and that brought HR down, but I'm feeling rather ill, maybe need to get used to it.

    I don't think muscle wasting is the whole answer though. I have been doing supine exercises with hand weights and leg weights for the past 2 months, and it has helped with rebuilding some muscle. But it hasn't filled in hollows around my wrists even though I was able to do most of the arm muscle exercises, some pushups, etc.

  18. Thanks for the responses and welcomes!

    I recently got an abdominal binder and it does seem to help. My symptoms come and go, so I probably need to wear it longer to know for sure. In another thread, someone described how, after wearing it for a while, you feel all kinds of sensations/discomfort/sounds in that area when you remove it, and that's what I experience.

    On the joints, I wonder if anyone else has noticed these "hollows" around their joints, like one has lost weight/padding just around the wrists, ankles, knees, neck but not elsewhere.

  19. Hi, I'm a new member, just had a TTT last week and was diagnosed with POTS, with alpha receptor dysfunction. I've been prescribed midodrine and beta blockers. I am so impressed with all the knowledge here. I'm still learning some of the basics of POTS. I'm in my 50's, have previously been healthy and active, and it seems I developed POTS a few months ago after a concussion.

    Despite drinking about 4 litres a day, my skin looks terribly dehydrated (mostly on hands, arms, neck and legs - not around abdominal area) and I've developed obvious hollows around my joints, wrists, ankles, knees, neck, i.e. no padding around the bones. My weight has stayed fairly constant, mainly because I've become bloated around the abdominal area.

    The doctor said I looked dehydrated and advised me to up my sodium intake from 3g to 4 or 5 g per day, which I've just been doing for a couple days. I also have joint pain, which I forgot to mention to the doctor because my symptoms were bad enough that I have not been up and around that much. Also, I was foggy after my HR went over 150 sitting in the waiting room. :)

    I've just been on midodrine one day (I'll add the beta blocker in another day or so) and already am seeing now that I can be up and around more, that my joint pain (particularly in my knees) is limiting me. I've not had joint pain before my POTS symptoms developed. And while I've been limited in my activities, I have been consistently doing mostly supine yoga and weight exercises, but not too much in an upright position.

    Can this be a side effect of dehydration? Is joint pain (and hollows or just skin and bones around joints) a common symptom with POTS, or are there other possibilities I should look into?

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