For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

The Next Phase of POTS

I can't believe it is 10 whole days since my last post.  So what has been happening?  Life has been happening...life without being overwhelmed by illness.

I am in the very last of the three months of Dr. Levine's exercise protocol.  My findings:

  • If I do cardio and my heart rate exceeds 160 bpm then I feel VERY poorly afterwards.  It appears that I cannot tolerate such a fast heart rate and it triggers exercise intolerance.
  • I must continue to drink plenty of fluids and eat lotsa salt with my meals.  If I am not vigilant after a couple of days my dizziness returns
  • Vitamin B2 really does prevent the worst of migraines.  I forgot to take them for three days in a row and JEEPERS the migraine I received was a real doozie...couldn't even walk
  • Losing a good night's sleep knocks me out for the next day
So although there is some persistent fragility, overall I am MUCH BETTER!

11 comments:

  1. I'm really happy to hear it's working for you. At least the things you mentioned are things you have some control over and can manage. Go Life! :)

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  2. I'm really pleased to hear that this program seems to be working so well for you! My sister has POTS and is trying to become involved. It's a bit tricky though as we're in Australia. I would really love to see this work for her though as she's had a rough few years! Thanks for this post!! It is great to read about someone's positive experience :)

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  3. Has the program helped the gi symptoms?

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  4. Good for you!! What was a normal days activity for you before this program?what is a normal days activities for younow? I'm just trying to gauge where I could start because where I am now 30 minutes of exercise seems like i'd end up in the hospital.

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  5. Hi there
    To answer some of the questions:
    No, it hasn't helped the GI symptoms. I still have to be pretty careful about what and when I eat.

    I think the most important points about the exercise are 1) you must do cardio exercises sitting down -rowing or recumbent bike, and 2) it is difficult and very unpleasant at first.

    I thought I was going to expire when I started. It was scary and dreadful but it turned out to be worth every moment of agony. As Tiffany said from Dr. Levine's team "you won't die". lol

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  6. I want to second your comment about feeling like you were going to expire. When I first started my exercise program (I see a different POTS specialist), I could hardly walk down my drive way. My husband and family members would watch me or walk slowly with me. My heart rate would soar. I was crying, shaking, nauseated,, and feeling like death. I did not die and am now jogging 5 miles/ day and ride my recumbent for an hour each day. Unfortunately, I still have POTS, but I am much better than where I started.

    Dr. Levine sounds like he has a more structured program that starts you out sitting, which would be more gradual.

    I am still here to tell the tale when I thought the exercise would kill me. I never in a million years thought I would ever jog again. Now sitting and standing.... that's another story.

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  7. Leah, your comment is interesting. can you do things throughout the day besides your exercises? You seem to hint that sitting and standing are hard for you. Is it debilitating and disabling?

    Elisabeth: Do you have to rest throughout the day?

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  8. When I started the exercise protocol I had to rest for sometimes 3-4 hours after exercising. Now I can occasionally go without resting but I usually need about 1 to 1 1/2 hrs to afterwards.

    Generally the fatigue sets in about 20 minutes after completing the exercise.

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  9. Lucy,

    Yes, it is totally debilitating and disabling. I can not take my kids to their practices, rarely drive unless necessary, cook dinner, go to restaurants, go grocery shopping, or go anywhere without my pull out chair with a high back. I miss out on a lot. I am a pharmacist, and I can not work. People assume that because I can jog that I must not be that debilitated.

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  10. Leah, I can relate to people thinking because you can do one thing you must be normal and healthy, it's very frustrating. Maybe if you try Dr Levine's protocol it'll help you be able to do some more things.

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  11. Thanks so much Lucy,

    As we all know, it's such a difficult disorder to explain to people. I would love to try his protocol. I need to contact Tiffani and what the stipulations are. I can not be without my Florinef, salt, and DDAVP, so I don't know if that excludes me or whether they have opened up the exercise protocol beyond study participants.

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