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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. Cort

    Cort Phoenix Rising Founder

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    I got the e-mail below from somebody and then sent it on to Dr. Light who'd mentioned propanolol in his presentation at the IACFS/ME. He gave a nice long response and permission to post it. It's interesting because as he notes theoretically they should not work in ME/CFS but in some patients they apparently work very well. (I believe some patients have the opposite effect)

    I think this is really fascinating (albeit very difficult) field.

    PATIENT

    Just HAD to write about the idea about propanolol helping CFIDS/FM via Dr. Light's theory because I was totally disabled by CFIDS from 1984 to 1988. Typical story, tons of doctors, tests, clinics. No answer.

    No life. A doctor did try propranolol for me but it didn't help much. Finally an endocrinologist took a wild stab at the idea of a tumor of the adrenal glands and gave me Normodyne (labetalol....a beta AND alpha blocker).

    Ta da.......total cure!!! Up out of the bed after 4 years of hibernation - got married, had kids, etc.

    I felt like I was cured for years. Then I couldn't get the name brand any more, and I slowly sank downward toward the pit again. The generic form seems to be missing something -but it's better than nothing I guess.

    Of course all our cases are complex, there's no doubt about it. But I was SO EXCITED to hear that propanolol is being touted as a potential help - maybe the labetalol could help someone too - or better yet, the actual Normodyne if we could get out hands on the real stuff. None of the doctors have any idea why it worked that miracle for me - maybe Dr. Light's theory explains it - and if it does, then maybe there is indeed some hope!


    Dr. Light

    On Thu, Oct 8, 2009 at 9:21 AM, Alan Light <Alan.Light@hsc.utah.edu> wrote:

    Here's a link to the paper I did on Dr. Light's presentation at the IACFS/ME Conference - "Surprise of the Conference". It was really exciting.

    http://aboutmecfs.org/Conf/IACFS09Surprise.aspx
  2. Chris

    Chris Senior Member

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    beta blockers

    Cort, many thanks, this is very interesting! I have in fact been using a very low dose of another beta blocker, Coreg (aka Carvedilol) which also has a bit of alpha blocking as well as beta 1 and 2 blocking, and it seems to help keep my heart calm, which includes a lower incidence of palpitations and less likelihood of setting off a reaction after a bit of exercise. My cardio told me I did not need it, but I kept it because it seemed to help a bit. I use about 2 mg twice a day, an amount that has no noticeable negative effects.
    Incidentally, there is a bit of research showing that Coreg has a beneficial effect on diastolic dysfunction, which Cheney has shown is virtually universal among us; I have also been pulsing Artemisinin (100 mg twice a week or so), and Cheney reports that this too has been improving diastolic dysfunction. I shall report results when I next get an echocardiogram--I am generally feeling a bit better slowly, though had assumed this was mostly due to Rich van Konynenburg and Freddd's mods thereof. Maybe all of the above are helping! Best, Chris
  3. Cort

    Cort Phoenix Rising Founder

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    Thanks Chris - please keep us updated on your reports with Dr. Cheney. I was just informed of a patient who did very well with him. It'll interesting to see over time if improved diastolic dysfunction correlates with reduced symptoms.

    You're taking arteminisim - not artesunate - is there a reason why?
  4. Chris

    Chris Senior Member

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    artemisinin

    Cort, just to be clear--I am not a patient of Cheney's (wish...), but recently subscribed to his research site. I am a little nervous about posting anything only accessible on the pay part of the site (I won't maintain that--too expensive), but will keep monitoring the public parts of it, and will report. I use Artemisinin because I am working without the help of cooperative doctors, and as far as I know Artesunate is not accessible to the public--and almost certainly not up here in Canada. Artemisinin is accessible to me, and not too expensive. Cheney alternates Artesunate with Wormwood, and Artemisinin is the active ingredient in that, so I figure I am getting some of the total effect, though less than the whole. The stuff can have effects on the liver if used too long or too heavily, so I am more interested in keeping safe than in strongest results. Best, Chris.
  5. susan

    susan Senior Member

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    Would anyone know if a beta blocker like this could help with high BP and fast heart rate....always had low BP and suddenly everything has turned around. I twigged when the patient said about the endocrinologist treating her as tho she had an adrenal tumour. That is what my Doc thought I had. I cant take drugs but just maybe a 1/5 of a tab might work.

    I was put on a 24 hr machine in hospital and my pulse while resting was 130. The heart specialist came and said to me..." you are ridiculous, you have been here resting and look at your heart rate" He said " go see a psychologist"
    What does one do....no CFS experts in my neck of the woods only me and then I have to do the fight when I am too sick to argue.
  6. Cort

    Cort Phoenix Rising Founder

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    You have a resting heart rate of 130 and he says go see a psychologist! Maybe what you really need is an autonomic nervous system expert. The problem is that we just don't make sense to much of the medical world; they don't know what to do with us.

    I really don't know if it would help or not; this is a really tough area of medicine to understand. Perhaps someone else has an idea.
  7. susan

    susan Senior Member

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    Fast heart rate

    I know it is crazy. My heart rate is not too bad while resting but if I get up to move around the adrenalin starts pumping.....like there is an emergency.

    I have tried 3 hrs of meditation and Gupta for over a year with not much difference to it all. Is there such a thing as an autonomic specialist DR. I live in Australia. He tells me to ignore the heart rate and go walking but I just cant as I am too exhausted.
  8. Chris

    Chris Senior Member

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    crazy hearts

    Hi, Susan; you really should get to a good cardiologist, if there is such a thing! Obviously the one in the hospital was not helpful--could your GP not refer you to another one? Beta blockers do both lower the heart rate and moderate blood pressure and generally damp things down a bit, so I would guess that one might help you somewhat, but I think with Cort that it sounds as if it might be an autonomic nervous system problem too that should be looked at, though such things seem difficult to treat. But a decent GP might feel competent to prescribe a beta blocker--a high heart rate and high BP will not do you any good if maintained long term. Good luck, Chris
  9. Victoria

    Victoria Senior Member

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    Susan (& Cort & others),

    my Cardiologist started me on 1/4 tablet of the Beta Blocker, Atenolol (ie 12.5mg) this week. While most of my heart tests were good, he is concerned over how much my inner heart muscle has thickened. He thought my high BP (medicated) was making my heart work too hard. I've had several incidents now (which led to the local hospital emergency department for several hours).

    Rather ironic that he wants my heart to slow down (& I'm now up to drinking 3 cups of black coffee in the morning to give me enough energy to walk to work & work all day in an office). I was only drinking one cup of coffee at the beginning of this year.

    I drink chamomile tea for the rest of the day (& filtered water). I was 4 years caffiene free before I got bogged down with pain/fatigue.

    Anyway back to the Beta Blockers...............

    I took the first dose this morning & actually felt more "grounded" or "settled" today at work. I didn't feel "driven" and on edge.

    I just took my BP - it's 10.20pm (out of interest) and it was 130/71 pulse 66. I've been madly typing for quite a few hours now & 130/71 is actually very good (for me).

    I usually only have a BP of 120/80 (ideal/normal) when I meditate or do deep breathing for 5 minutes at home (in peace & quiet). The fact that I can drop my BP up to 40 points after doing 5 mins of deep breathing, seems to indicate to me that my high BP is probably related to work & stress (not an actual medical BP problem).

    I'll let you know how I go.

    The Cardiologist wasn't sure if I could tolerate this drug, so said if I felt too tired after taking it for a week, to stop taking it.

    He doesn't need to see me for another 6 months now.

    Victoria
  10. Mithriel

    Mithriel Senior Member

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    Susan,

    A high pulse is often a consequence of long term anaemia due to coeliac disease.

    My daughter had a pulse rate similar to yours. The anaemia from coeliac disease can be low level but the heart pumps faster to compensate. It stabilised once she was diagnosed and went on a gluten free diet.

    I was unable to lift myself off the bed when I was put on betablockers.

    Mithriel
  11. susan

    susan Senior Member

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    Thank you everyone for your inputs.

    I eat gluten free so anemia might be out.

    I think my probelm is a very oversensitive sympathy nervous system overload.... Worse in the morning when cortisol levels are rock bottom.

    I just have to turn over in bed and my body thinks there is a FIRE!!!. I dont think this at all.

    Victoria how do you drink 3 cups of coffee!

    I am so ill for 3 days after drinking just one...caffine sets more adrenalin off in my body that I dont need.

    I am going to pursue a beta blocker with my GP rather than the specialist.

    I hope Victoria you see some benefit.

    Susan
  12. nina_online

    nina_online

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    Susan, this sounds like me. If the cat meows at night I am up with heart pounding for hours. I am taking a beta blocker (propranalol) as well as klonapin and they help a bit, but not in the wee hours of the morning when I wake up with a panic attack. I read on another list (cfsmeexperimental) that those could be adrenal jolts produced by the body during periods of low cortisol, like during the wee hours of the morning. It's gotten so bad that when I try to fall asleep in the morning, as soon as I drift into sleep, I get a jolt with racing heartbeat.

    In addition, I have the MAO A genetic variant and I think that means that I don't clear out epinephrine and norepinephrine. So my current hypothesis is that I have adrenal fatigue (possibly I have mercury in my adrenals) and when the cortisol underperforms, the adrenaline kicks in and my low MAO enzyme levels mean that it stays around so I become a shaking mess, the neurological equivalent of a premature baby.

    Have you had a proper 24 hr saliva cortisol test? (A regular cortisol test by a mainstream endo didn't reveal problems, but I have symptoms of adrenal fatigue). I just submitted mine (a good one is Adrenal Stress Index by Diagnos-Techs. $150 online but my local compounding pharmacy had it for $99. If it comes back negative you didn't waste any money paying for a medical visit. )

    I am awaiting the results, but in the meantime, today out of desperation I tried some borrowed hydrocortisone tablets (I have 2 friends with adrenal fatigue) and boy do I feel so much better (took one with lunch and one with dinner). Haven't taken any propranalol or klonapin today and I feel as cozy as a napping cat. Well see how I feel at 5 am, but so far I can feel a real difference.

    Nina

    Nina
  13. brenda

    brenda Senior Member

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    I hope Susan does not mind me saying something here, and I hope that I do not offend you in what I will say, I like you and think that you are a nice person who loves to help others.

    Susan was saying if I have got her right, that coffee makes her so ill that it is well ny impossible for her to contemplate drinking it let alone three cups. I am like that too and a lot here I guess. One gets to the stage where caffeine is not tolerated.

    That is not to deny that you are ill.

    But you have back problems and are greatly disabled by them and have a lot of pain through them even though you are still working. And as far as I can guess the disease process of me/cfs in you has not progressed to the stage in which it is impossible for you to get to work no matter what the necessity - it is impossible at some stage, and those who got to that stage needed to work also and could not afford to give up work but they had no choice and it was in no way due to them not having enough determination or necessity. The disease in most will progress to this state of not being able to work unless they are healing and still able to work.

    And the progression of the disease will be greatly speeded up if we get into the trap you are in, that of pushing the body with a damaging substance ie caffeine and medications. I can see you are in that trap and I greatly sympathise with you, but you are on the downward spirial that I have witnessed with others and one day you will crash out fully and no be able to get out of bed. Something has to give and unfortunately it most usually has to be the work. Sorry.
  14. susan

    susan Senior Member

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    My dearest Victoria,
    Brenda is so right about me having good intentions toward you and genuine concern because I care about everyone on this forum. How could any one not as you are delightful, refreshing and FUN. I was concerned for you drinking that much coffee as I know you have a heart problem and coffee effects me greatly....literally scares the living daylights out of me. This coffee thing happened to me overnight when I was living in Vancouver.....I went weird.

    Accidently one day a few yrs ago here in OZ,Gloria Jean coffe shop gave me the real stuff instead of decaf and I thought I was going to die. It was like I was in a giant panic attack for 3 days that did not want to stop....no sleep. Same at the dentist as the shot has ephinephrine in it.....adrenalin

    I feel for you terribly having to go to work and manage on your own. I know you have to work and it is very hard as with having all this pain. I admire you greatly for trying so hard. A couple of weeks ago I felt very concerned for you as you were really struggling. I wrote and said if you felt you needed a chat to call me, you and me being in the same country. I like you prefer emails.

    I am home bound and lead a very quiet life as the adrenalin thing wont let me do anything else. I think I spend most of the day meditating and listening to my breathing trying to calm the heart rate.

    I LOVE your chatty writings and find you and very INTELLIGENT and do so enjoy your jokes. All day I have been trying to get around to writing on my Community Garden expereince today on your other post. i might make it to morrow. I am very sorry if I offended you...it was not my intention.
  15. susan

    susan Senior Member

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    Hi Nina,
    I used to be like you but not as bad now., waking at night in jolt like I had been in a car accident It was just plain awful. I used to tell the DRS I was in shock and they did nothing and I rotted in bed for 4yrs. Yes I do have adrenal insufficiency and DRs are ignorant of it.


    Yes I am a veteran of adrenal saliva tests and I do have bed rock cortisol levels especially first thing in the morning I can barely move. Unfortunately I cant take the hydrocortisone as it burns my stomach terribly. So I take raw adrenal...Isocort and that works Ok ,not as good as the Hydrocort tho. A compounding pharmacist told me hydrocort cream 1% is good to rub into your upper inside arm as it is equiv to 10% in the body like you are taking. I have been tying this lately.

    I am detoxing from mercury at the moment.

    Drugs really dont agree with me. I just had UTI infection and had to give myself daily shots and I began itching all over my body.

    What is this MAO enzyme thing you a talk about...can you tell me about it and what it means.

    Thank you for your help.

    Susan

    I
  16. ramakentesh

    ramakentesh Senior Member

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    Interesting interpretations of what is going on, but it all fits well in the orthostatic intolerance paradigm:

    Impaired reuptake of norepinephrine (one of the mechanisms implicated in POTS) results in inappropriate vasoconstriction following exercise, cerebral vasoconstriction and in some patients increased peripheral resistance (cold feet and hands anyone? blue/purple discolouration of the lower extremities?)

    When the bodies circulation is disrupted due to inappropriate vascular control the body uses epinephrine/adrenaline in a rather poor attempt to increase blood flow to the brain - this results in anxiety like symptoms and further increases the heart rate abnormalities already present due to excess norepinephrine and sympathetic tone (reduced norepinephrine reuptake).

    beta blockers dont always help - they cut out the adrenaline and reduce stimulation of the beta receptors but this actually leaves the alpha receptors unapposed, meaning the inappropriate vasoconstriction is worse rather than better. (beta 2 receptors are vasodilators). So on betas you may feel better but they may worsen dizziness, exercise intolerance and fatigue. That is why combined alpha beta blockers are considered more effective in hyperadrenergic patients.

    I would suggest that any one having these types of symptoms (sympathetic overactivity, feeling wired, dizzy or waking at the with adrenal rushes, etc) should get a tilt table test done.

    In melbourne Australia there are a number of doctors who specialise in disorders of autonomic circulatory control - Dr Chris O'Callaghan at the Austin and Professor Esler at the Alfred and Dr Hamer at the Epworth are good starts.

    There is also another common pathway that results in chronic orthostatic intolerance - reduced neuronal nitric oxide which results from increased angiotensin II levels either from a genetic defect of catabolism or because of chronic inflammation (possibly why fibro and POTS are sometimes found in those with systemic rheumatic diseases).

    There are measurable cerebral blood flow abnormalities in many CFS patients and in all COI patients.
  17. ramakentesh

    ramakentesh Senior Member

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    And before you tell you that you passed a tilt table test in the past, there is one type of POTS where cerebral vascular control itself is impaired, meaning there is reduced blood pressure velocity in the heads of these patients when standing WITHOUT reductions in blood pressure (similar to POTS) or more importantly even increases in heart rate!
  18. liverock

    liverock Senior Member

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    It could be a medical problem as some PWC's suffer higher BP when standing, as opposed to the more common symptom of lower BP when upright.

    A lot of people seem to be doing altered breathing patterns to regulate BP these days to get off BP drugs, probably due to the side effects.

    I think we tend to shallow breathing because we are not as active, due to our symptoms and lower metabolism, and this causes our blood chemistry to be altered.

    Shallow breathing increases CO2 levels in the blood and causes the blood to become more acidic. This causes the kidneys to retain more sodium which increases BP.

    Deep breathing reduces the CO2 and lowers BP. Breathing in through the nose increases nitric oxide levels, which further reduces BP.

    I have been doing breathing exercises for a while now as well, usually timing each one to last 5/6 seconds. Timing the breathing out is the hardest part.

    To time the breathing out, I picture Jack Nicholson in the film 'Anger Management' when he was calming an angry patient and told him to breathe out whilst saying the Eskimo word 'GOOSE-FRA-BA'. I tried it and it really worked for me, its really relaxing. :)

    In another part of the film he told Adam Sandler to sing 'I Feel Pretty' from West Side Story to calm him down. I tried singing this but the wife heard me and I haven't heard the last of it since.:D

    http://www.control-your-blood-pressure.com/breathing-for-lower-blood-pressure.html
  19. ramakentesh

    ramakentesh Senior Member

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    Actually in orthostatic intolerance the breathlessness is a result of hyperventilation but its triggered by excessive unloading of blood from the chemoreceptors causing unusual baroreflex sensitivity reductions.
  20. Cort

    Cort Phoenix Rising Founder

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    I've met people with ME/CFS who are hypersensitive to caffeine (myself include - just a little bit of decaf often sends me flying) and people who seem to drink it by the gallon. We are a diverse group!

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