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Lessons from ME/CFS: Finding Meaning in the Suffering
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Peckerman - Hypoperfusion in CFS/POTS leads to PENE

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by xchocoholic, Sep 18, 2011.

  1. xchocoholic

    xchocoholic Senior Member

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    Hi ALL,

    I just found Peckerman's interview on cardiac dysfunction in PWCs (persons with CFS) ... below ... Note this was written in 2003 and I don't know what, if any, progress has been made since then.

    Based on my experience with OI over the last 3 or 4 years, I'd say Peckerman is right. I've been trying to explain to my doctors why I get the feeling that blood rushes back into the upper part of my body for a few years now and here it was all along. Most of my ME/CFS symptoms have been under control via diet for a few years now so it was easy for me to see how my IO was affecting me.

    It's good to see that he understands that just getting the blood back into those organs isn't going to fix the problem immediately. It takes time for those organs to recoop from the blood loss. And that's why it takes me at least an hour after laying down to recooperate. He calls this hypoperfusion ... My doctors seem to think that as soon as my BP and heart rate recovered that my organs did too. Um, No ... :mask:

    I'm still looking at this but I can tell you from experience that salt loading and exercise didn't help me. I tried salt loading for 4 years only to find out that I'm actually chronically dehydrated and need other electrolytes as well. :eek: Excercising made my muscles stronger but didn't help my OI. BTW. Exercises done while laying down flat is easier and safer for us because our upper bodies don't get depleted of blood. I wish they'd stop recommending that we ride recumbent bikes ... :confused:

    tc ... d

    http://www.cfids.org...2-article01.asp



    merylg and November Girl like this.
  2. xchocoholic

    xchocoholic Senior Member

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    I found these videos on youtube. These are from a study conducted by Marvin Medow, PHD on blood flow in POTS/CFS. I'm not sure where this was done or who else was involved.

    Hypoperfusion and vasonstriction in POTS/CFS

    I've only watched the first 2. The part I found most interesting here on the first video was at the 7:40 mark. He refers to how our skin depending on our temperature can be a major resevoir of blood ...

    http://www.youtube.com/watch?v=CcGasi3ejSM&NR=1

    tc ... d
  3. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    The problem with this theory is that for many the cognitive problems are far worse than other supposed symptoms of hypoperfusion, so it seems that whatever is happening is more focussed in the brain.

    I have had two lots of spect scans which showed less activity in the front part of the brain. I was unable to get anyone to tell me the significance of this at the time. From memory I was lying down for the scans, so blood flow should have been back to normal. Yet activity (oxygenation) was still impaired. Is this part of the hypoperfusion explanation? This could be vascular, metabolic, or blood volume problem.

    Perhaps there are two issues involved - hypoperfusion and vascular. This may explain why there is so much variation in response to medications for OI or POTS from patient to patient, because there are multiple issues involved and treatments only target one.

    Also I am not happy with the time frame of one hour in the study. My symptoms last for some hours even after lying down, though I admit I find it difficult to differentiate between fatigue and OI by that stage.
  4. xchocoholic

    xchocoholic Senior Member

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    Hi Rustyj,

    Sorry to hear that you're semi expired but I got a chuckle out of it anyways ... : )

    Have you had a TTT ? I had the poor man's tilt table test and mine shows that I have both OI and POTS. I did my own POTS test and had to lay down after 10 due to an overwhelming urge to faint ...

    Like you, from what I've experienced the effects of hypoperfusion won't just go away immediately when laying down. It takes me awhile to start feeling normal. FWIW ... giving up caffeine has improved the blood flow to my brain. Caffeine constricts blood vessells.

    Good point about this being vascular ... I just went through 5 - 6 Meyer's cocktails + saline + glutathione pushes. The first time I had this done it took 4 hours because it was too painful. My veins and muscles in the arm with the IV were hurting. After 2 -3 of these, the pain stopped and my last one only took 45 minutes. I've never had that reaction to a plain IV of saline. I have no idea why the pains stopped tho ..

    Each time, I was also told that my urine showed that I was dehyrdated despite salt loading and drinking 10 -12 glasses of water daily. I'm using more than just salt to hydrate now and feel much better. I'm sure being hydrated will help my veins ...

    tc ... x
  5. alex3619

    alex3619 Senior Member

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    Hi, I think OI including NMH and POTS are a major problem for the majority of us ... but not all of us. Those who have no OI issues still get PEM and brain fog I think. To me its more like an onion ... strip away one thing causing problems and you find more. OI is one layer. Mitochondrial dysfunction another. So too with neurological issues, cytokines, hormones, immune activation, heart function and so on. Its the combination that gives rise to our symptoms. Each waxes and wanes, and if they all wane together you go through a good patch, if they all wax together then you are not having a good day.

    A lot of people with OI seem to be saying that they benefit more from electrolyte loading than just salt. I wish there were more research on this.

    I have NMH with high blood pressure, not POTS.

    Bye
    Alex
    ahimsa likes this.
  6. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Hi xchocoholic, no TTT. So I really don't know which I have (I get confused easily, so haven't bothered to chase up the literature). I thought the terms were hazily interchangable depending on which doctor you went to and depending on which causal factor the doctor thought might be applicable. I have one of them :D Can't stand still for more than five minutes before getting dizzy, sick, fatigued. It's okay if I am moving around, especially if under adrenalin (which of course fatigues me). However it is my worst symptom - though it took me 15 years to realize it.


    GIVE UP COFFEE, GASP!
  7. xchocoholic

    xchocoholic Senior Member

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    HI Alex

    That's a good point. My integrative doctor is helping me address as many of these components as possible. I gotta hand it to her. She's a real trooper .. :victory:

    She keeps telling me that I have leaky gut and is trying to undo the leaky gut as well as the consequences. I don't understand what she's saying 3/4 of the time but under her guidance, I've been able to reverse some of my CFS symptoms ... heck if I know what the outcome will be since I've been disabled for so long ...

    Brain fog is common with food intolerances, hypoglycemia and candida. But from those I've met on the web, PENE aka PEM isn't common with food intolerances, hypoglycemia and candida.

    I'm not sure if everyone with dysautonomia get PENE aka PEM ... hmmm ... it makes sense to me though that if our upper organs are struggling to function while we're upright, there would be consequences.


    tc ... x



    Hi Rustyj,

    In case you're interested, I just started this thread on the DIY Poor man's tilt table test. This symptom is VERY common in PWCs but not many doctors understand all the symptoms of this illness.

    http://forums.phoenixrising.me/show...MTTT)-for-OI-POTS-and-NMH&p=205930#post205930

    Even I hate to admit that giving up caffeine really helped me quite a bit ... :D ... IMHO, my withdrawals would've been significantly reduced if I'd taken longer to eliminate it. Now the ongoing urge to try caffeine / coffee / chocolate hasn't been dealt with. I still have to talk myself out of it everytime. :angel:

    tc ... X
  8. xchocoholic

    xchocoholic Senior Member

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    It's still taking me an hour after laying down to "recover" from the petite mal and sob I get from being upright. My brain, lungs and heart always, I mean always, go from being in spasm to starting the process of relaxation when I first lay down. My vision even gets fuzzy for a few minutes. I can't talk when I first lay down either because it feels like my lungs and heart are refilling. Or maybe it's my esophagus ? Regardless, I have to deep breath for a minute.

    I think hypoperfusion is my biggest problem. In fact, I feel healthy until I'm up for awhile. Without proper blood with oxygen and nutrients getting to my brain, heart, lungs, etc and the resulting spasms that occur in my blood vessels in an effort to retain blood, they can't function.

    I bumped this because I just took a shower which landed me flat on my back on the bed due to oi. And I'll be down for an hour till my body recovers. And this makes me grouchy ..

    I "think" to many medical professional and some pwcs, aren't aware of the consequences of orthostatic intolerance.

    Rant over .. Lol ..

    Tc .. X
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  9. taniaaust1

    taniaaust1 Senior Member

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    Same here.. I mostly feel healthy and feel like I have energy.. till I get up. I think I must have lack of blood in my body, which must be one of my major issues which ends up affecting everything else. I wish someone would test my blood volume. Nowdays I usually go fine fast again once I lay thou it often takes a couple of hours of laying (sometimes Im okay a lot faster then that when laying).

    I think the OI in ME should be far more looked at.
    Poor blood flow= brain fog, dizziness, headache, bowel issues, pain, body shaking or twitching, weakness
  10. xrayspex

    xrayspex Senior Member

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    i wonder what peckerman did since then? i was excited about that research but not much came of it in mainstream. our univ clinic and hosp ordered his special machine for testing but no one knew how to use it so they got rid of it one of my docs told me :(

    I can so relate to what some of u say, i feel normal after lie down, I explain to people/docs I dont need to nap i just need to be flat for like an hour (sometimes more or less) to get normal again

    what is the treatment if blood volume too low?
  11. xrayspex

    xrayspex Senior Member

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    altho right now i am experimenting with minute dose of gabapentin again and it seems to be doing something to mess with my pressure systems in body. sometimes lying down makes me feel worse on it, almost like a stimulant effect.
  12. xchocoholic

    xchocoholic Senior Member

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    The only treatment that I've seen being used for hypovolemia is a saline iv. There are
    even some people who's doctor have written prescriptions for these.

    This is a joke when
    you think about all the components found in blood. They should at least throw some nutrients in that
    IV bag. Lol ..

    I recently read info here, "the anemia of chronic illness" that may explain this. I'm not up enough
    on the terminology in this article to understand it tho.

    Imho, if you have symptoms laying down you should look at your bp and hr at that time. Mine's
    been unusually high at those times. Or since gaba is helping, look at what you're ingesting that your body considers
    an excitotoxin.

    Tc .. X
  13. xchocoholic

    xchocoholic Senior Member

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    Hi tan,

    I totally agree that they're missing out on how oi affects us. Fwiw, I can't believe that they're recommending
    exercise for pots too. Roflmao .. Bozos .. Tc .. X
  14. xrayspex

    xrayspex Senior Member

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    i was tried on the saline and didnt notice an improvement (like 15 yrs ago) some other people in town improved on it tho.
    i have never noticed any big help from drinking water or salt etc it doesnt hurt.
    verdict still out on gabapentin, i am nervous about the pressure changes it causes, at certain times of day its a help for being upright but when i still feel need to lie down now it makes it feel more uncomfortable, cramps in arms and legs etc and internal pressure increased. it does seem to help prevent some headaches. all i can barely tolerate is like .10ml day or every other day.
  15. xchocoholic

    xchocoholic Senior Member

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    The saline ivs only help some temporarily. They don't help me at all. They will alleviate hypovolemia by increasing
    blood volume but then we pee it out.

    I still need to drink a lot of water and use salt too but
    only to treat my dehydration and low bp that I get everyday if I don't use these. It's had no accumulative affect.

    I'm not up on the gabapentin. I thought I was. I thought it was similiar to klonopin which is why I suggested looking
    at excitotoxins. I'd still look at excitotoxins if I were you tho. You're describing part of my reaction to caffeine.

    Tc .. X
  16. xrayspex

    xrayspex Senior Member

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    thanks xchoc, I would assume gabapentin might help dull excitoxin stuff in us
    I react to so many things in evmt not sure always what it is.....have cut out a lot of stuff over the years
    I should cut out caffeine but I still crave black tea sometimes....sometimes its great but I can tell it has a backlash and worsens hypotension stuff
  17. xchocoholic

    xchocoholic Senior Member

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    It took months after eliminating caffeine for me to feel the full effects from being without it.
    My heart and / or adrenals were always racing and I thought it was normal to feel that way. Lol.
    There was a permanent tightened feeling too that's gone now.

    I know what you mean about the cravings tho. It gets easier to resist once a solid connection to
    the toxin and reaction is understood. My worst enemy is the prepared food at whole foods. I finally
    spoke with a chef from there last week who told me that everything could be cross contaminated
    with gluten, etc because they're not careful about any allergens. So ... Now, I can stop trying to
    eat there.

    Tc .. X
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  18. xrayspex

    xrayspex Senior Member

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    oh i love whole foods, i always carefully pick out gluten and garlic free...but cant say i feel great after eating there

    i just started restasis this week and its an excitotoxin for me :( i can handle the drops but later get headache or dizzy and sensitizes eyes photophobia and pain...I expected painful sting when put in drops that part not bad but gonna have to stop it cus already have a problem with migranes and was cutting my headaches way back with gabapentin and better diet before the restasis, its bad news, too bad, one more failed tx
  19. ramakentesh

    ramakentesh Senior Member

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    Cerebral hypoperfusion is now established in POTS and OI. And neither according to over 30 research papers are related to leaky gut or candida...
  20. Emootje

    Emootje Senior Member

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    "A recent well-designed and carefully executed study (6) reported finding
    in CFS, compared with matched controls, significantly raised
    concentrations of 8-iso-prostaglandin-F2a-isoprostanes, which
    are not only considered to be among the most reliable blood
    markers of oxidative stress, but are also known to have potent
    vasoconstrictor effects on cerebral arterioles (36). The presence of
    significant increases in isoprostanes in patients with CFS thus
    may explain the results of a number of studies, which found
    reduced absolute (5) and relative (37,38) cortical and subcortical
    blood flow in CFS. Insofar as cerebral hypoperfusion is known to
    increase brain lactate (39), raised CSF lactate in CFS is potentially
    consistent with a pathophysiological model in which by-products
    of oxidative stress – isoprostanes – with a potent vasoconstrictor
    effect on peripheral vasculature lead to decreased regional
    cerebral blood flow, with consequent increases in anaerobic
    glycolysis and brain lactate, the end product of glycolysis"
    http://www.cfids-cab.org/MESA/Mathew.pdf


    According to Dr. Bell these isoprostanes are also the best candidates to cause low blood volume in CFS.


    (9 -18min)
    CFS and isoprostanes:
    "F(2)-isoprostanes, however, were consistently higher in CFS patients"
    "Patients with CFS also had significantly increased levels of CRP and 8-iso-prostaglandin F2α isoprostanes"
    "Patients had significantly increased levels of isoprostanes"

    Labs that offer isoprostane testing:
    Medivere
    Laboratoire Philippe Auguste
    Health Diagnostic Laboratory inc.


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