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Low dose beta blocker for P.O.T.S. is WORKING

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by BEG, May 2, 2010.

  1. BEG

    BEG Senior Member

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    I am taking 1/4 tablet of Bystolic (5 mg.) every morning. The following symptoms have disappeared:

    chest pain
    heart palpitations
    inability to raise arms even momentarily
    inability to stand for short amount of time
    pre-syncope
    pounding heart
    shortness of breath
    P.O.T.S. episodes: upon standing a 20-30 pt. increase in heart rate, tachycardia then sharp decline in B.P., followed by the "must sit right now" feeling

    My husband says he's noticed a "tremendous" difference in my functioning.

    It's simply inexplicable --- the difference in CFS without P.O.T.S. I still have the other symptoms of CFS: weakness (energy envelop), cognitive dysfunction, sleep problems, mandatory rests, pain, etc. However, I'd say my functionality has gone up at least one point. :Retro smile::Retro smile:

    I hope this helps someone.
     
  2. Esther12

    Esther12 Senior Member

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    Pleased to hear that.

    I've been thinking more about the similarities between some CFS and migraines (which is what I associate beta-blockers with) recently. I wonder why migraines are seen as so much more respectable than CFS now?

    I'd heard that beta blockers can often lead to more fatigue, but I'm pleased that's not happened to you, and you're feeling more 'functional'!
     
  3. Sasha

    Sasha Fine, thank you

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    That's great news, BE Girl! Enjoy!
     
  4. BEG

    BEG Senior Member

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    Thanks, Sasha and Esther12. This is almost too good to be true. I'm thankful I didn't invest in the G-suit. LOL I do have to consume a lot of salt and water to keep my blood pressure from going too low.
     
  5. glenp

    glenp "and this too shall pass"

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    Great

    Thats great Brown-eyed-girl! I am happy that it is really helping you.

    Ether, what do you mean with the association of beta blockers to migraines?

    glen
     
  6. alphahusky

    alphahusky

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    Maybe I'll try this one after the baby is born. Atenolol was helping, Pindolol during the pregnancy seemed good, I liked Propranolol because it made me tired and I need that at night. All three helped with anxiety and migraines, which I've been getting almost non-stop since the baby was born. Thanks Brown-eyed girl!
     
  7. BEG

    BEG Senior Member

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    Thanks glenp. I still have this "it's a miracle" feeling. And to think I was offered this treatment a half dozen years ago but wasn't told to take a very low dose. I felt so bad I never took another betablocker until 2 weeks ago.

    I wasn't quite sure what was meant by the migraines either, but I haven't had one since being on the betablocker. It could be just coincidence, and only time will tell.

    BE G
     
  8. kerrilyn

    kerrilyn Senior Member

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    That's great BE G. I've read beta blockers are used primarily for hypertension, do you have hypertension? Or do they work differently (another intended use) for POTS patients?

    I think I have POTS, I am going for a TTT in about a month, but I have low blood pressure and it doesn't raise when I stand. If anything my BP falls, well, given long enough it plummets so I may be in the HMH too. So I wondered if beta blockers would help in cases like that? I have noticed an increase in migraines/headaches in the last 6 months and when I have a POTS episode, upon standing I get a pressure feeling in my head. I wouldn't necessarily call it a headache as much as pressure.

    Sounds like the key for CFS patients and meds is very low dose of just about everything. Too bad doctors don't understand that very often.
     
  9. BEG

    BEG Senior Member

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    Thanks so much, Kerrilyn. Good luck on your TTT. That's absolutely the best place to start. If it is P.O.T.S., please don't put off treatment like I did. It might take a lot of experimenting, but don't give up. No, I don't have hypertension. My BP is normal to low. The mechanism of the betablocker for P.O.T.S. is different. See Cort's article, "The Perils of Standing" for an explanation.

    http://www.aboutmecfs.org/Trt/TrtOIIntro.aspx

    Good luck!
     
  10. Mithriel

    Mithriel Senior Member

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    I am glad you have found something that helps.

    I couldn't lift my head off the bed when I was given beta blockers for high blood pressure, though I am fine with the replacement pills I was given.

    My husband takes beta blockers every day and they have cut down the number of crippling migraines he gets.

    Mithriel
     
  11. Esther12

    Esther12 Senior Member

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    I've only heard of beta blockers being used as a migraine prophylaxis. Maybe that's just because I know a few people who get migraines though.

    I've also been thinking about the similarities between some of the more severe forms of CFS and migraines recently, so the link was at the front of my mind. I've done some reading on migraines, and it seems that we really don't know what causes them, they seem more common for women than men, used to be thought to be the result of hysterical personality types, etc - but migraines now seem so much more 'respectable' than CFS, and I'm not really sure why.
     
  12. ramakentesh

    ramakentesh Senior Member

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    Migraines are thought to be caused by overactive ion channels in a genetically suspectible over sensitive mind. This causes sympathetic excess in the cerebral vascular system, and overall vasoconstriction which in turn causes release of inflammatory vasodilating peptides like substance P and calcitonin gene related peptides. In injection of CGRP will actually cause a migraine in most suspectible patients.
    Serotonin - as in most bodily functions - also plays a significant role.
    In CFS similar overstimulation and 'migraine aural' symptoms predominate to the point that many POTS patients used to get diagnosed with basiliar artery migraines. Migraines, CFS and POTS are all interrelated and its probably that the sympathetic nervous system activity seen in POTS and OI and the parasympathetic withdrawal experienced contributes to the increased prevalance of migraines in POTS/CFS.
    Also the same vasoactive peptides that occur in migraines are found in the vascular system of some POTS and CFS patients - calcitonin gene related peptide, substance P, Neuropeptide Y whcih all increase nitric oxide mediated vasodilation (the pain in a migraine and perhaps the pooling in some forms of POTS/CFS).
    Recent work by the Centre for Hypotension suggests that most CFS patients have parasympathetic withdrawal and cerebral autoregulation failure. Like a super migraine.
     
  13. BEG

    BEG Senior Member

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    Interesting points about migraines. I haven't had a migraine since begining the low-dose beta-blocker.

    And showers . . . now they aren't the killers they used to be. They're bearable once again. It's been so long.

    Main complaints now are muscle aches in legs (from standing more?), and low blood pressure later in the day. Also, the signals which told me to 'stop and sit' are gone. Therefore, I'm wearing myself out daily. I've got to learn the new signals or use the clock. Pacing and switching are still essential.

    It's been a very revealing experience -- life with CFS but not P.O.T.S.
     
  14. Esther12

    Esther12 Senior Member

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    Maybe, if you're now on medication which helps with one of the key problems, you'll now be able to use regulated exercise to help with your CFS?

    Pleased to hear you're still feeling a bit better though. Excellent news.
     
  15. glenp

    glenp "and this too shall pass"

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    Interesting

    I believe many of "these symptoms" are tied together too.

    I have been taking maxalt for migraines, but upon monitoring it am finding that it also helps with other symptoms that must be tied to it. I also take dextroamohetamine in a much lower dose then previously, and it seems to help in this area too.

    I am happy to hear that you are doing so much better on the beta blocker. I am going to ask my cfs physician about this as he had already suggested beta blockers for when my heart rate is high

    glen
     
  16. ramakentesh

    ramakentesh Senior Member

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    Now heres a weird one - when i dont drink or take beta blockers I generally have POTS and fatigue all the time - whereas when i take beta blockers or drink one beer a night it improves and then i get shiocking migraines once a month (which Id take any day over daily POTS and fatigue symptoms).
     
  17. BEG

    BEG Senior Member

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    This is an excerpt from Dr. Bell's Lydonville News:

    Her activity is 16 hours a day. She can function a whole day, so she can work and raise a family. At the beginning of her illness her activity was only three hours a day - that was why she could not attend school. The only thing that has improved is the orthostatic intolerance - the ability to function in the upright position. And that is why she feels that she has recovered. The daily somatic symptoms are an annoyance which she copes with very well; ignores in fact. It is ironic that her fatigue is severe, but without orthostatic intolerance, so she considers herself to be "recovered."

    I felt a dramatic difference when I started the low dose beta-blocker for P.O.T.S. I am greatful to Dr. Bell and his followup of patients, especially this woman who considers herself "well" because she can stand up. I often thought, if only I could stand up I might have a chance at some semblance of life.

    I don't feel recovered, and I deal more with PEM issues than ever before. All the other symptoms are still there, except I don't get frighteningly ill upon standing. And that has made an incredible difference.

    The underlining is mine.
     
  18. sensing progress

    sensing progress Senior Member

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    Is the positive effect from the beta blocker still working for you, Brown-eyed Girl? I am on Florinef for about a month but so far no help with the POTS. I believe adding a low-dose beta blocker is the next step. Were you/are you on Florinef also?
     
  19. Otis

    Otis SeƱor Mumbler

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    sensing progress,

    Great idea about this new forum! I may be looking at a low-dose BB myself. I had big jump in my BP very recently.

    Otis
     
  20. citybug

    citybug Senior Member

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    What kind of doctor do you have, that knows what to prescribe?
     

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