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Cardiologist has lost it or I'm not getting it.

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by BEG, Aug 2, 2012.

  1. BEG

    BEG Senior Member

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    At my last visit, my cardiologist told me about another patient who has POTS much worse than me, of course. His suggested treatment for this patient and all POTS patients is to "challenge" the cardiovascular system.

    By this he means, sit and stand up more often. Also, stay out of the reclining position and sit up right with feet flat on the floor. I once heard that this is equivalent to standing upright. He suggests more excercise in the vertical position and aerobically as well. It's not enough to do strength training, he wants aerobic movement. And this from the same guy prescribing oxygen and atenolol for me.

    I am asking, am I missing something here? Is this a correct mode of treatment for POTS?
     
  2. Esther12

    Esther12 Senior Member

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    Hi BEG.

    I really don't know about this myself, but my understanding is:

    this is a bit of a controversial area.

    It seems that a lot of the research done on POTS stuff was done by NASA investigating the affects of zero gravity, and autonomic problems related to deconditioning were a problem there, with reconditioning being the answer.

    It also seems that others have problems like POTS related to genetic problems, viral triggers, etc. In these cases, deconditioning can still be a problem, but it's far less clear how useful reconditioning would be, or how it should be done - yet some people base their treatment of all POTS on deconditioning models most relevant to data from NASA.

    I suspect that no-one really knows what is best, and it might be wise for you to play about for yourself, and try to find what seems to work best for you. Have you tried any recumbent aerobic exercise?

    Oh... another thing is that it could be that exhaustion and stress worsens autonomic problems, so attempting to overcome deconditioning could make things worse by providing another challenge to your autonomic system.

    I don't really know what I'm talking about with any of this. Good luck with finding something that works for you. (I'm assuming that you've already done things like increasing salt intake, rehydration, etc? Have you tried any of the medications that have been found to be useful?)
     
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  3. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I had the worst case my doctor had seen. I could not sit up long, walk, stand or even turn my head. In a wheelchair only. I was incredibly ill. I could do nothing, just getting a bath was all I could do. Everyone is different. Careful exercise is ok for less acute cases. Things like exercise bands and a reclining bike works for them. Most docs say sitting exercise is ok for people that are very ill.

    I am on several forums about Dysautonomia so I have heard a lot from people about doctors.

    Some doctors that don't have a grasp of what Dysautonomia/POTS is love to say exercise is all patients need. lumping them together. Some actually think POTS is caused by too little exercise. That could not be further from the truth. Just like with CFS, most of us were very active, in good shape and exercising.

    Dr. Levine and others think just because astronauts get symptoms like POTS after not walking and having gravity affect them, it is the same for us. :thumbdown: He likes to call us GRINCH. Small hearts, again NOT true.

    In my case and half of people with POTS, it is caused by autonomic neuropathy, triggered by one or several events or illnesses.

    My doctor told me to flex my feet forward and back at first. The calves have to stay strong. Muscle pumps the blood up to the brain. The blood needs to circulated for the nerves to heal also. I could do that and then as my diet and supplements healed my nerves, I could do more and more exercise. Exercise bands, my peddler and sitting exercise has been what I do. . It is very hard if the autonomic nervous system is not working, making you dizzy, nauseous and feeling faint/lightheaded, tachy, etc.

    I am not sure how ill you are or if you can walk etc. Everyone is so different.

    Muscle is very important, but just do what you can. Heal the cause and then exercise more.:)Sally
     
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  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I'd say, change doctors! This guy obviously doesn't know much about POTS and his instructions are counter to almost everything I have heard from patients and the autonomic specialist I used to see. Few cardiologists understand POTS.

    If you try any of his recommendations, do so with great caution and only for brief periods. As others have said we are all different, but for most of us, these are the wrong instructions! You will find a lot of good suggestions here from patients. There is a forum section for POTS and OI.

    Take care and best wishes,
    Sushi
     
  5. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Yes, few cardios or even neuros understand. I went to one cardio, then one more. I do give credit to my last one. He didn't know what was wrong but he went to ask another doctor. They thought it could be dysautonomia. At least I could learn about it, then call my Integrative MD, out of town. After that, I could start to heal.
     
  6. Tito

    Tito Senior Member

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    I heard something similar with people using mini-trampolines at home (make sure your ceilings are not too low!)
     
  7. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    WOW, trampoline would be the last thing I would try for POTS. With Tachycardia, it would be awful.
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think trampolines are recommended for improving lymph flow, but, as Sally says, would most likely have a bad effect on POTS patients.

    Sushi
     
  9. Tito

    Tito Senior Member

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    I was not saying it is a good idea, I was just reporting something I had heard.
     
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  10. Sasha

    Sasha Fine, thank you

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    Hi Sally - could you say something about how to use exercise bands for exercises that are good for OI? And what sort of sitting exercises?
     
  11. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I like the "Sit and Be Fit" videos. Pretty slow and easy. She uses bands and easy exercise. It is for older people but great for those who need to sit a lot.

    I do bicep and tricep curls with bands. I also put the long band under my outstretched feet (heels on ground) while sitting and with both arms pull towards me like rowing. I like to put the band behind my upper back and push the bands forward for the arms and back. I hold it above my head and pull the band out on both sides and do it in front of me also.

    I put one end under a foot and pull upward with my right arm while turned a bit to the left. Then the other arm. This works the arm and core. There are a lot of ways to work the tricep.

    You can do one rep or more. Much better to do a couple and see how it feels later. I built up slowly, still don't do a lot of reps.

    Toe raises while standing or sitting are GREAT. Gets the calves strong to pump blood up. At first I could only do one. I was weak.

    I sit and pull one foot up then down and then the other. This is very good for the knees. My doctor wanted me to do them for my knees when I told her they were weak.

    For my core, my doctor told me to stand near a kitchen counter and rest my hands on the edge, leaning in like a plank. Just a about 10 seconds at a time. You can do it in a doorway also. Just be careful. Have someone there if you can't stand long. You can have a chair nearby too.

    When I am in bed, I pull my bent legs up to my chest several times for my core. I also pull my leg up one at a time to stretch. I move a lot before sitting up. I then take my BP to makes sure it is ok to stand.

    I always have my w.chair nearby when I am doing a lot of standing like in the kitchen. I sure don't want to ever fall.

    I hope you can understand what I do, hard to write it, ha. There are probably ideas on You Tube for sitting and using bands.

    I use my peddler also to get the blood circulating. I don't do all of this every day! :)
     
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  12. Sasha

    Sasha Fine, thank you

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    Thanks, Sally - that's very useful. I need to start doing something, just not sure what, so this is a good start.

    Those Sit & Be Fit DVDs look great but unfortunately they're only available with US Region 1 coding so I couldn't watch them here. I'll look for something similar that would play on a UK DVD player.
     
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  13. taniaaust1

    taniaaust1 Senior Member

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    It sounds stupidity to have a person who tends to get dizzy onto a tramp and have them jumping. Its a recipe for a broken leg.
     
  14. taniaaust1

    taniaaust1 Senior Member

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    That is exactly what the very first doctor I saw over POTS (the first to listen to me about it) had me do... strengthen my calves and lower legs. Unfortunately in my case 2 mths of low body exercises, squats.. and stuff.. POTS was exactly the same thou my legs muscles were probably much better toned!!

    I think some of us have blood volume so low that no amount of exercise is going to help us. (I also did another exercise program of more active exercise for a couple of months I was including very very short bursts of aerobic into my exercise program..that didnt help the POTS either).

    There certainly does seem to be different subgroups when it comes to POTS even within the ME/CFS. eg raising head of bed is said to help many POTS patients.... I figure thou it must be those astronaunts with POTS as raising the bed head only helps about 20% of ME patients who have POTS according to survey.

    Exercise is something which many POTS specialists find which helps their POTS patients.. I saw a POTS specialist who swore it helped her patients.. thing is most of her patients werent ones who had ME!! (I think she was more familiar with POTS in non ME teen girls). She wasnt even aware of hyperadrenalic POTS (which some with ME have) existed at all.

    Like one here said..in some of us.. exercise can worsten our symptoms and hence also worsen our POTS.

    If you get post exertional symptoms.. forget it. you may need to find a new specialist. Sounds like he thinks POTS is caused by deconditioning and thou that could be the case in some who have ME/CFS (as being mostly bedbound can cause POTS).. but there is often in us something more then this also going on. And besides.. aerobic exercise is usually harmful to us so that advice is poor. Leg strengthening exercise which can be done reclined and using bands is a far better idea to try.

    Next time your cardiologist goes on about POTS patients which are worst then you and what has helped them... ask him if they had ME/CFS too. (they probably at all dont).
     
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  15. BEG

    BEG Senior Member

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    Yes, I agree that having ME/CFS has everything to do with whether this mode of treatment will help. My guess is that we can improve things to a point with limited excercise but that repeatedly challenging the vascular system will only result in PEM. And I will ask him if these other patients have ME/CFS. I didn't feel like exhausting myself at that particular day and time by bringing up CFS. I do, however, intend to make it topic #1 at my next visit.
     
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  16. CAcfs

    CAcfs Senior Member

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    Hmmm......I wonder if challenging the cardiovascular system strengthens the heart, and that helps?
     
  17. lnester7

    lnester7 Seven

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    All I am going to say is that I have been trying to exercise w no success for the past year. My OI has gotten so bad I spent the last 1.5 month mostly in bed or reclined, then I get florinef and miraculously My PEM is gone and Now I can exercise, I am doing one hour 30min wights, 30 min bike (I did not increase slowly). I get not much PEM and I am upright now most of the time. I tried salt, compression.... all the natural stuff to no avail. I AM CONVINCED that treating OI can make all the difference in the world. I would try all the prescription until u find one that fixes the issue.
     
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  18. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    why is florinef used, and not some other corticosteriod like prednisone?
     
  19. lnester7

    lnester7 Seven

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    I am new on the whole OI world, Not sure why florinef. I have not seen an OI specialist so I am not very educated on the topic. Sorry for not being of more help.
     
    Sherlock likes this.
  20. PNR2008

    PNR2008 Senior Member

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    Does anyone experience tremors. Mine are getting worse and becoming embarrassing. Can anything be done about them?
     

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