Discussion in 'Phoenix Rising Articles' started by Firestormm, Nov 21, 2013.
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Andrew, thanks for another great piece, to which I offer an addendum. Julia Newton, leader of the group at Newcastle U. that as you report has been doing great research on the ANS and ME/CFS, published a paper a few years ago, listed under the name of Sutcliffe K, “Home orthostatic training in chronic fatigue syndrome–a randomized, placebo-controlled feasibility study”, PMID:19912315. I have the full text of the paper, which describes a simple procedure of standing in relaxed posture with one’s shoulder blades touching a back wall and one’s heels ca.12-15cms in front of that wall. One holds the position until one develops symptoms, and one needs–this is important–a “drop zone” of soft stuff just in case one passes out, and/or a friend to intervene if necessary. This is maintained once or twice daily up to 40mins.
The results were excellent–most patients improved their Orthostatic Intolerance substantially within one month, and those who kept it up for 6 months generally reported an improvement in fatigue too. There is by now a fair amount of literature on this simple technique being used for, mostly, neurocardiogenic syncope (fainting), though this is the only paper I have found using it for ME/CFS. I have been doing this for about 3 months now (I am 80, so must expect slow response!) and can report that my OI has improved significantly, and my BP rise after exercise (a prime symptomin the past) has been much reduced. I also have dry eyes–another ANS symptom–and this too seems to be improving slowly. Needless to say I shall continue.
But I advise caution: I have never fainted in my life, but know several with ME who have, and one has to take the warnings seriously. I also note that my legs feel heavy and rather numb for a short while after, and I have to leave the position with care as I sit down. It is also very boring–I try to time my sessions for when tennis or some other entertaining but not blood-pressure raising event is on TV–I have a wall opposite my TV that makes this convenient.
One thing I wonder about autonomic stuff and CFS is, how likely is this to be secondary?
Do people with the flu, AIDS, depression or brain injury have evidence of similar problems? From my position of ignorance, it seems possible that almost anything which places a person under strain could also increase the chances of these sorts of autonomic problems. Is that right? Or are these a useful indication that certain specific things are going wrong?
This just came up on one of my alerts. I don't know what to read into it, and haven't found or read the paper. Others have posted on ME sites, but it looks to me that this large non-ME longitudinal study (12,000+ enrolled), highlights a significant if small risk of developing atrial fibrillation (tested for with EEG), in people with Orthostatic Hypotension. Anyway, seemed appropriate to post here. What do you think @Legendrew ?
21 November 2013
Study identifies possible link between orthostatic hypotension and atrial fibrillation
@Esther12 I would also be interested in learning of how OH affects other people, with/without other diseases. The above study I refer to doesn't indicate if those found to have OH also have other diagnoses - though I haven't read the paper - which is a shame. I am not sure if OH can be related to ME as a symptom or as something that could develop from extended periods of lying down due to illness. I am forgetful of the evidence in this regard (or the theories).
@Chris Thanks for the reminder about that paper from Sutcliffe and Newton - I know it is a favourite of yours and it is great to hear you are benefiting - though it is early days - from the exercise indicated. I wonder if you or anyone can indicate how common NMH is believed to be in CFS. The abstract indicates that it is, but again I am forgetful of how common or why it is thought to be commonly associated.
I have OI, sometimes called orthostatic hypotension and I have had some real problems with severe atrial fibrillation = 2 ambulance trips to the Emergency Room!
Here is another factor though. I had been getting Afib about once a year for a few years and had been able to stop it with potassium and magnesium. But this spring I started getting frequent, severe episodes. I discovered that I had become hyperthyroid from taking a low dose of thyroid meds because I had been hypothyroid for a couple of years. But my thyroid had improved a great deal in a few months and I hadn't realized it.
This is what set off the more severe, more frequent Afib, but didn't explain the history of getting it very occasionally for a few years. Then I discovered that long term use of ambien was associated with Afib in a small but significant percentage of users. I had taken ambien for about 10 years.
I'd guess that many with orthostatic hypotension also take ambien as sleep problems usually go hand in hand with other autonomic nervous system issues. I have stopped ambien and have not had any more episodes of Afib in the last 6 months. I sure hope I don't get more, but ambien is another factor that could contribute to Afib in this patient group.
@Firestorm--I know that the figures for OH among those with ME are very high, will try to dig some out for you soon.
@Sushi and others-- as well as the things you mention, Cheney has some interesting comments on the origin of AF among those with ME in his latest talk, which is posted in parts with a brief account somewhere on this site--seems that it is part of the almost frenetic attempts made by our left ventricle to find enough blood to pump out with each beat--the atrium gets involved in the struggle, and suffers...
There is a website, www.afibbers.org , that offers the suggestion that supplementing with Taurine can often help with arrhythmias; it has helped me with Premature Ventricular contractions, and has helped two people I know with AF. The Mayo clinic says it is quite safe for long use at a low dose--I take about 1,200 mg daily--and at a considerably higher dose short term. No guarantees of course, but it seems it might be worth trying. There is--or should be--a lot of Taurine in the heart, and since as the name implies it is found mainly in meats, it tends to be low in vegetarians and vegans. Chris
@ Firestorm, here are some quotes from several papers from the Newton group (she is not always the lead author):
The Sutcliffe/Newton study from 2010 that I referenced simply states “orthostatic intolerance is a frequently described symptom in both NMH and CFS, with recent studies confirming lower blood pressure in CFS compared to controls.” An earlier paper from this group, 2007, “Symptoms of autonomic dysfunction in chronic fatigue syndrome” provides evidence that “in the Orthostatic Tolerance domain,... CFS patients had mean scores [on a well established questionnaire about ANS symptoms] almost four-fold higher than controls,” and also “A particularly strong association was seen with symptoms of orthostatic intolerance, suggesting that abnormality of dynamic blood pressure regulation is particularly associated with fatigue severity in CFS/ME.”
In another paper from 2010, “Impaired cardiovascular response to standing in Chronic Fatigue Syndrome,” lead auther K.G. Hollingsworth, we find this: “the hearts of the CFS group appear to be working harder in response to the stress of standing compared with controls. Further clinical evaluation of the CFS/ME group confirmed that symptoms on standing assessed using the OGS [orthostatic grading scale] occurred in 61/64 (95%) of cases compared with 25/64 (39%) of controls.” Not exactly what you were looking for, but perhaps close enough to give the picture? As you see, this is a group whose work I follow!
@Sushi and @Chris thank you both
Chris I wonder if that Orthostatic Grading Scale was based on measurements of blood pressure (presumably it was) as opposed to patient-reported symptoms, and if so the results were sufficient for a diagnosis of OH using the methods in the paper I initially referred to?
Do you happen to know if this definition is a usual one? And what the traditional treatment might be?
I am not aware of any studies in ME patients with OH looking for atrial fibrillation - are you?
For the record, I don't believe I suffer from this condition. If I did, it seems to have passed. Rapid heartbeat uses only occurs when I experience an epileptic "episode" in bed or bad dream or something, but passes after a while of doing something else.
Dizziness for me and nausea was most dire and long-lived but was eventually treated successfully with a drug I still take prescribed I believe for labyrinthitus.
However, the drug is in part a muscle relaxant I believe, as is another I am prescribed - so it's possible I guess they could be acting in concert to pacify a rapid heartbeat. But I think that's pretty thin as a theory
@Firestormm--the Hollingsworth/Newton paper I cited used the Orthostatic Grading Scale described in Shrezenmaier C, "Evaluation of orthostatic hypotension: relationship of a new self-report instrument to laboratory-based measures", PMID: 15757013. I do not have access to the full text, but the abstract says it is short, 5 questions, and works well. It is focused on hypotension.
I am not sure it helps a lot to focus on exact definitions--I have seen evidence that some who do not qualify for a POTS diagnosis for instance do qualify if the tilt is maintained a bit longer, and generally the various definitions seem to merge into one another. They are all symptoms of an ANS dysfunction as far as I can make out.
I know from my own use of the "home orthostatic training" thing that what happens depends to some extent on my status as I begin; if my BP is a little high, my HR will be higher, and so on--though there are also signs of some reciprocal relationship between BP and HR--as if my ANS is still in a rather rough way trying out various measures to adapt to my insistence on remaining still and standing--it has not yet figured out the best way to integrate BP, HR, peripheral resistance, and all that stuff. But it does seem slowly to be relearning.... and I have hope!
I am wary of pharmaceutical treatment until they really have us properly figured out; for instance, beta blockers are sometimes used for this stuff, but there is evidence that they are harmful to mitos, and so on. I took low doses of Coreg, a beta (and alpha) blocker for quite a while, and though that seemed to help a bit, I ended up in worse shape--though that may have been caused by a cardio putting me on high dose of an ARB. So I am very wary of what docs suggest with their very patial understanding of what is going on in us.
There is an interesting account of one doc's treatment that I will try to find --I think it is somewhere on the CAA website--a youngish doc at Princeton, I think.
There is also a talk by Peter Rowe on the CAA site.
@Chris thanks for clearing up the Grading Scale and diagnostic methods for me
Just thought I'd post a link to a PR discussion about comorbidity of POTS and CFS in case some people hadn't seen it.
Interesting stuff, I think today in modern anatomy it is still understated the interconnection between different system. The vascular and nervous systems are deeply entwined with one another so it's easy to see why a problem in one can cause further problems in the other, the trouble then is in sorting out what is causing what as often the problems feed into one another.I'm personally of the opinion that the vascular issues in ME trigger off and perpetuate the nervous system issues however this is something of a hunch and there is a lot of evidence to support both ideas. I think we are finally in a position where researchers are looking at one area in depth and seeing the connections themselves which is great. This study is very interesting though as it clearly shows how one problem can influence or even trigger another.
As I discussed a little in my previous post, I am of the opinion that the autonomic problems in ME are a secondary problem to another upstream problem. It's been clear for many years that all diseases have a systemic effect to some degree and the examples you mention all involve a degree of autonomic dysfunction. These symptoms are a good starting point to try and work back from to find what could be causing it - unfortunately this is never an easy thing to do no matter the starting point, I'm personally having problems currently finding the upstream cause of my secondary hyperparathyroidism - you could liken it to a murder mystery wherein there is evidence of the culprit but everything always gets clouded in mystery and as time progresses in a patient the true cause often becomes masked by the many effects it may have. I'm hopeful though that we now have evidence of ongoing problems, following those paths has got to take us somewhere, learning as we go.
Hi; as has been mentioned, there is new stuff on ANS and cardiovascular issues on Cort's website, with links out.
@Firestormm--the doc whose name I had forgotten is Pocinki, and he has an interesting piece available on the CAA site--go to www.cfids.org and type "Dysfunction Junction: The ANS and CFS" into the window, and that should take you there.
@ Andrew; the issue of origins is tough--that last Newcastle paper did a fascinating job of paralleling what happens in the cells and mitos of "peripheral" muscle tissue, with what happens in brain blood perfusion ( usually under local control)--with evidence of mechanisms through which the ANS could affect the muscle tissue problems with energy creation, ROS build up, and slow lactate clearance. But just how those three processes relate to each other--I guess we will have to wait for the next papers!
I do have a story of my own to tell, however. After 70 healthy and very active years, I began to have a loss of breath and energy and some left chest pain with intensive energy. I was sent for a treadmill test, but passed the whole 10minute protocol with, it seems, no signs of ischemia on the monitor, and the doc in charge proclaimed "it's not your heart!". However, I had felt signs of stress the last minute (a year earlier I would have laughed my way through the whole thing). So I walked home, feeling somewhat relieved, but puzzled. The next day I had a sour stomach--a new sensation for me--Tums to the rescue. A few days later, I woke in the middle of the night with ice cold feet, dry eyes, and a mouth so dry my tongue was stuck to my palette. The feet thing resolved, my mouth resolved more slowly, the dry eyes are still with me.
The mystery was solved when I had an echocardiogram, that showed I had a "severely stenotic--.7 sq mm--aortic valve." I think--no cardio was interested in discussing it with me--that the intense back pressure within my ventricle during the treadmill test must have set off all kinds of alarms and dysfunctions in my ANS--which has multiple connections with the heart of course. A few days later, I suffered acute OI while trying to prepare dinner. The weeks between that and the echo were total nightmare--a thorough immune check revealed nothing, no one had a clue.
Surgery more or less resolved things; but two years later I had recurrence of OI, chest pain, high BP, but cardiac testing could find nothing wrong; yet my exercise ability had shrunk to virtually nothing. This slowly resolved over the next months, but hit again about 9 months later, this time for real and it is still with me. So I feel it is all down to those mitos and/or the ANS--the timings do not suggest viral sources to me--so I await the next instalment from the Newton group! They do have a short paper from a few years ago suggesting that ME/CFS when it strikes the old is a different disease, focused on fatigue and OI, and that fits me perfectly! So I feel they have my number ...
Like you Chris, I am older than most here. At my age and stage, ANS problems, especially OI, are the most difficult things I deal with. If I were an adolescent with ME/CFS, however, I bet that my OI would be taking the form of POTS instead of just the major descent in blood pressure that it is, accompanied by a stubbornly low heart rate most of the time. Because as a young person, I would still have had "oomph"--i.e., adrenal function, a fight or flight function, to a much greater extent than I presently do.
The chest pain, graying of vision, going slowly into blackout, losing coordination and balance, and inability to assess what is happening and what I need to do--I go through these while walking or standing in order not to have a life limited so much by lying down and sitting, which in my case are alone. I tough it out as much as possible, but do sit before falling, or put my head way down, even when it is awkward and embarrassing to do this. There is no way I could deal with a wheel chair with no one to push, rough or missing sidewalks, or just country.
But back to the OI. What this is doing to the heart and the brain must be significant. No way a person gets chest pain and starts to struggle to breathe, while vision is graying out, without there being damage, in my opinion, to the heart and brain. Come on!
Researchers and patients should always check out the endocrine system too. I had my hormones brought up to an age-adjusted level years ago. I expected it would help a lot but it only helped me a little. Not a solution, but necessary in terms of a "leave no stone unturned" search for improvement.
I find Dr. Cheney's thinking and research very interesting, also Dr. Newton's, and Dr. Pocincki's realistic approach to treatment helpful. Dr. Peter Rowe has done careful work--I thank him and others for the rescue of Midodrine from being pulled from circulation (a pun!). I don't know if and when Chelsea Therapeutics new drug Northera is going to become available for those of us with OI to try out. We really need help with severe Orthostatic Hypotension and the increasing nerve damage--neuropathies, etc. with go with this Autonomic Dysfunction/Disease.
Yikes - scary story!
I was prompted by your first statement to wonder what age most people are here.
I will start - I am 60, but was about 42 when I became ill. (Thought - maybe a poll would be better, but what keyword to use, as PR won't search for 3-letter words like 'age' or 'old'!)
I used to have the darkening of vision and severe OI when I was in my 40s and 50s together with symptoms like severe vertigo from time to time but all these symptoms have been cured by supporting my adrenal function with 6mg Prednisolone and just 2.5 mc hydrocortisone in the afternoons plus a couple of times a week I take a tiny dose of Fludrocortisone. I also take Lo Salt in water about 4 times daily to ensure my potassium levels are good and also sodium levels.
The other drug that has helped to sort this out is 20 mg Propananol on waking and maybe twice a day if the weather is warm or if I want to do more physical stuff.
I am now 65 and yet don't suffer OI at all, in fact my bp will have a tendency to go a touch too high say 140/90 if I drink normal tea and if I start doing a bit too much physically but another dose of the betablocker sorts it all out in less than an hour. So to be honest I don't think its an age thing, its more that the adrenals aren't coping. I should also add that it was found I had hypothyroidism so in addition to the adrenal meds I take 2 1/2 grains of dessicated thyroid. It has made a massive difference to the quality of my life and before I had an accident which has damaged my knee I was regularly doing between 5500 and 6000 steps daily.
I tried propranolol in my 40s but it was either for anxiety or IBS. It made me almost black out, presumably due to hypotension. Now I have hypertension but reducing salt makes no difference, and I actually need a lot of salt and my potassium is normal-to-high.
But I don't have 'typical' OI as far as I am aware. The main postural issue I have is tachycardia about 5 minutes after lying down.
What a mixed bunch we are!
This study and technique are extremely interesting. Were any of the people in the study bedbound or housebound?
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