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Dr. Light on Beta Blockers for ME/CFS

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Cort, Nov 19, 2009.

  1. ramakentesh

    ramakentesh Senior Member

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    Yeah its interesting that this occurs. Sometimes caffeine can be helpful for me, but usually it makes me feel worse and I am hyper sensitive to it. A junked up sympathetic system that is way overactive wouldnt probably need or appreciate anymore stimulation, even if the caffeine spikes BP and increases brain blood flow a little.
  2. Chris

    Chris Senior Member

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    those beta blockers again...

    Hi, a while back I posted that I was on a very low dose (2 mg twice a day) of Carvedilol, a beta blocker that also has some alpha blocking built in, and that it seemed to keep my heart calmer.

    A couple of days ago I decided to quit the morning dose--I would like to be drug free! So this morning I take my usual walk, and find myself walking faster than usual; I enjoyed the sensation, more like life used to be. But 15 mins out I realized I was tiring, and still had to get back home; another 10 mins I was home, slowly, and very tired; had the first real PEM reaction I have had for some time. So I figure my intuitive feeling was correct--for the time being I do better with that low dose beta blocker. I should pay more attention to my own advice!
    Best wishes, Chris
  3. Lily

    Lily *Believe*

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    Aww sorry Chris...

    Hope the worst of it is over and that you don't have further or worse symptoms tomorrow or the following day. I know that feeling is rotten. Hang in there and let us know how it goes for you.

    Regards,
    Linda
  4. CBS

    CBS Senior Member

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    Beta Blockers, Ace Inhibitors and Fluid Balance = HR & BP

    Susan,

    Sorry to hear about your experience with the hospital cardiologist. The last 12 months have been an endocrine and cardiovascular hell for me but my endo and cardiologist have finally gotten things stablized.

    First in Dec. 08 I started having periods where I needed to urinate every 30 minutes. This would happen every couple of days and it would last for 3-4 hours (go figure?). Both during and after these periods, I would increase fluid intake to compensate for the loss. It usually felt like I had gotten behind the hydration curve and my BP would drop while my HR increased trying to pump 4 liters through a set of five liter pipes. In February, all hell broke loose and production of ADH (anti-diuretic hormone) ceased completely - probably due to CNS infection or a cyst seen on my MRI). That lead to crazy amounts of water loss and the need to drink 6-7 gallons a day just to not go into shock. In the mean time, my BP and HR were equally as out of whack (very erratic BP and high HR).

    Once we figured out that the problem seemed to be my fluid balance (Central Diabetes Insipidus - CDI), I was put on a replacement hormone (DDAVP) and things seemed to stabilize within hours. However, gradually over the next several months I began having spikes of extremely high BP (200/160) and HR 140 at rest. In between, my values were high but not as high as the spikes 140/100 and resting rates from 110-120 with spikes in the 140 BMP range when simply standing.

    I got the same treatment while in the hospital 'for observation,' "your watching the values and making yourself anxious - stop wasting my time and see a shrink." After a couple Holter monitor studies, another couple weeks with an event monitor and a trip to a pulmonologist, things started to sort out. The pulmonologist said that my blood 02 and HR were unusual in that upon exertion it was clear that my HR would increase significantly long before my pulse 02 began to drop. This was the opposite of what she expected as she seemed to think the cause was autonomic. During this period I was also experiencing several TIAs a day and episodes of syncope. My cardiologist felt that the syncope and TIAs were being caused by cerebral hypofusion that was ironically being caused by high BP and too much blood being forced inefficiently through the cerebral vessels. He prescribed 20 mg lisinopril (an ace inhibitor) and told me to hang in there for 10 days because it was going to take that long to work. Sure enough, at some point 10 days or so out my BP dropped dramatically and the TIAs and syncope ceased that day. He also put me on 150 mg of metoprolol (betablocker - 50 mg fast acting TIB) to get my HR down. The Betablocker worked within hours. My cardiofelt that all of this was autonomic and possibly related to the cyst/mid brain issues causing the CDI. My BP has been quite stable on the lisinopril and my HR has been controlled. In September I had a period where my HR dropped from 70 BPM on 150 mg metoprolol to 40 BPM on 100 mg. This required a very quick trip to my GP who, working with my cardiologist dropped my dose of metoprolol back to 25 mg/day of the long acting form. Some days I do have to take a second 25 mg pill in the early afternoon if I can tell that my HR is a bit higher than it ought to be (85 at rest - 100 standing for a short while).

    I hope this helps. Both the Beta Blocker and the Ace inhibitor have been life savers. I actually started to experience retinal detacthment in both eyes from the high BP spikes. Luckily it resolved quickly once we got the BP under control.

    Hope this helps (and be sure to find a more open-minded cardiologist),

    Shane

    PS. I also take low dose cortisol (15 mg/day) for central adrenal insufficiency, caused by a pituitary/hypothalamus (not an adrenal) issue (inflammation/cyst/idiopathic?)
  5. susan

    susan Senior Member

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    Thanks so much for your long explanation. I dont understand this field of knowledge that you know and will have to learn it fast. It is so maddening that we have to go and find all this stuff for ourselves, learn it, and then when an emergency arises and we have to seek medical help, it is always with some clueless person. I am so tired of being my own Doctor.

    I will seek out specialist in the New Year.

    thank you
  6. Michael

    Michael Guest

    Chris,

    Do you have low blood pressure? And did the Coreg have the effect of lowering it further and making you feel worse? I am concern about my low blood pressure becoming lower with the beta blocker even at the low dosage. Thanks for your info.

    Michael
  7. Chris

    Chris Senior Member

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    BP stuff

    Hi, Michael; my blood pressure tends a little high--OK most of the time, but spikes up sometimes when I don't feel good-seems related to what Cheney talks about in that, to me, key essay, "The Heart of the Matter", which you can find by Googling that title. The very small amount of Carvedilol I take does not make any significant difference to my BP, I would think--hard to measure exactly, because BP does vary, and mine can vary a good deal. It probably does very slightly lower heart rate--mine is usually pretty low (always has been--exercised a lot all my life until...)--but again not significantly or measurably, I think. The only effect I notice is that it seems to protect my heart from over-responding to exercise--don't have real crashes, just droops from time to time. This may of course be due to other factors.. I am working without close medical supervision, and the last cardio I saw thought I did not need the BB, but I simply seem to do better on that very low dose (arrived at, by the way, by getting 12.5 mg tablets, cutting in half, and then dividing the halves into thirds! a bit tricky, and not rocket science, but at those low doses I don't think it makes a difference.)

    I don't know if this will help you in any way, but I shall continue to take it until I feel I don't need it any longer--seem to be doing well on Artesunate, so that may happen within my life time! (I am 76, so...). Feel free to PM me if you want more info on my experience. Best, Chris.
  8. Michael

    Michael Guest

    Thanks Chris. I checked out the Cheney article, some good information. I would be interested in your experience ie how long you have had CFS/ME and what was the onset stimulus and your beta/alpha blocker treatment etc. What is PM? I am new to this site. Mike
  9. Chris

    Chris Senior Member

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    ME..or just me?

    Hi, Michael; I did post a brief bio on the "Personal Stories " thread --whatever it is exactly called--I am OLD (76), and my CFS began just three years ago, which was a bit more than two years after having had open heart surgery for a stenotic aortic valve plus one bypass. From which I made a good recovery, and was again exercising well until...Dec. 2006. I had had a bug in Nov, but am not sure exactly what triggered the first attack--symptoms were chest pain, fatigue, high BP, and raised myoglobin. My current theory is that I had mild cardiomyopathy from the valve, which was largely overcome, but triggered again by a viral attack in Nov-Dec 2006, which might account for the myoglobin (not heart specific, but no other muscle in my body was giving me trouble, so..). Since then it has waxed and waned--had reasonable summers both 2007 and 2008, but was put on a heavy dose of Cozaar, an ARB, for high BP spells, and that nearly did me in (see Cheney on dangers of ARBs--that guy is smart!).

    I figured out I had CFS about a year ago (finally confirmed--more or less) just a couple of months ago. I have been climbing back by first using good high lactoferrin whey (see Cheney's article on whey), then Rich van Konynenburg's simplified methylation protocol, more recently switching to methylcobalamin a la Freddd, and added Artemisinin, taken on and off; now on Artesunate (again, thanks to Cheney's DVD and later info), and seem to be recovering slowly and unsteadily but recovering still!

    All in all an atypical picture, I think; for the first two years I just thought "diastolic cardiomyopathy," and that fitted many of my symptoms. But I also had sleep disturbance, orthostatic intolerance (still do), PEM (post exertional malaise), and my finger prints were almost totally erased--an odd CFS symptom again noted by Cheney. So I figure I began with mild cardiomyopathy, that was triggered into CFS by a viral attack (delayed XMRV passed on by blood transfusion during 2004 surgery??) or something like that.

    I was put on a beta blocker after surgery, went off it a couple of times, took it again after the Dec. 2007 attack, and switched to Carvedilol after finding some research that suggested it was good for diastolic dysfunction, which echocardiograms showed I had, though local cardios ignored the signs and told me off for having a high ejection fraction. In fact my last echo (Sept 2008) showed my heart behaving exactly as Cheney describes CFS hears functioning in his latest (April 2009) DVD--high ejection fraction, irregular wall motion (was not present in an echo from Dec 2005, so was not due to the surgery, as the cardios here assumed), but was caused by viral attack? My heart is now quiet and usually well behaved; one day I will drop the minute dose of BB, but for the moment...

    You can see that I am largely self-diagnosed--have had few tests, but I think something like that is the real story behind my history and symptoms. And the echo evidence and the raised myoglobin and the fingerprints and orthostatic intolerance and PEM and sleep disturbance (oh, and early on I had several night sweats) and so on clearly point to CFS.

    Don't know if any of this is interesting or useful...but you asked! best wishes, Chris.
  10. Michael

    Michael Guest

    Chris,
    Thanks for sharing your story. Obviously your mind has not been affected and I believe your medical insight to be quite keen. I also believe that Dr. Cheney is accurate in much of his CFS/ME information. The fact that your orthostatic intolerance has not improved is of concern to me. I have low blood pressure and OI. I would think that the beta blocker could make this worse, but the improvement of PEM is what tempts me to try the beta blocker. I getting an echo tomorrow. Thanks again for the info. Michael
  11. Chris

    Chris Senior Member

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    echos etc.

    Michael, make sure they pay attention to your diastolic function as well as the ejection fraction. My OI may be improving slowly. And my best guess is that the BB does not so much improve PEM as ward it off by slowing the heart a bit and making it more difficult to drive it into energy deficiency, which triggers the PEM. My guess, anyway. Chris
  12. ramakentesh

    ramakentesh Senior Member

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    Ofcourse betablockers and their use also fit into the orthostatic intolerance paradigm in terms of their being an excessive sympathetic system reaction to orthostatic stress and/or orthostatic parasympathetic withdrawal.
    I think it was Dr Stewart that found that as many as 70% of CFS patients had POTS.
  13. SeaShel

    SeaShel Senior Member

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    Chris

    Hi Chris -

    In light of the XMRV findings, I'm wondering if you had a blood transfusion with your heart surgery?

    Just a question that popped into my pea brain as I read your post.....:eek:

    Shelley
  14. Chris

    Chris Senior Member

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    transfusions..

    Hi, SeaShel, yes, I think it a very likely hypothesis that has occured to me; the surgery report did not mention transfusions, but since the surgeon managed to tear a big hole in my aorta while doing the one bypass (should have said no! the valve job was necessary, but...), and they had to cool me down to 24c in head down position and partially drain me, I am assuming that I must have had several transfusions. If and when I test positive for XMRV, I shall assume that was the probable route (have had only one sexual relationship in the four years before surgery, and none since--and she is still doing just fine). Though it is a bit odd that I made a good recovery from the surgery, and the first signs of trouble came a little more than a year after. Anyway, thanks for the thought--will post results if and when I get that test! Best, Chris
  15. xlynx

    xlynx Senior Member

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    Hi,

    I think I would take a view on trying an alpha and beta blocker at some point.

    I took the beta blocker Atenolol as my heart rate whilst resting was 80 but when I stood up was 120. This was causing me some major issues.

    Atenolol was a double edge sword, my physical activity went up hugely. I could walk around for 4 hours in the day with no PEM. However I had dizziness permanently and really low BP and became depressed on it.

    So I stopped and now I walk 15 mins max.

    I wish there was a half way in between.
  16. soulfeast

    soulfeast Senior Member

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