arrow54 Comments
  1. Nina
    May 06 - 2:03 pm

    Great article.

  2. sandy ruffin
    May 06 - 2:19 pm

    I have had fibro/ibs/tachycardia since the night I was exposed to toxic chemicals in 1989. I know I am not getting enough blood flow to my brain. I know my muscles are tense to the nth degree. I know I am breathing shallow breaths (due to the fact that it is excruciatingly painful to breathe in when my muscles won’t stretch). I am aware that stress exacerbates my symptoms. I have to be very, very careful about what I eat. I have experienced no day without pain since 1989. I really wish I could share this article with my doctor, but am unable to since you limit sharing abilities. Too damn bad.

    • Cort Johnson
      May 06 - 2:21 pm

      I really want to enhance sharing as much as possible. Please let me know how I’m limiting it so I can stop doing that. :) I share your tight muscle problems, your breathing problems and to some degree your pain problem as well. They all seem to go together. Relaxation exercises are helping but they are very slow.

      • BONNIE JOHNSON
        May 06 - 4:05 pm

        DO WE HAVE A SHARE BUTTON FOR FACEBOOK–I ONLY SEE THE ”LIKE”. I DO USE THE PIN IT & I EMAIL OFTEN. YOUR INFO IS THE BEST I’VE EVER SEEN, CORT. I JUST WISH I HAD A PRINTER! KEEP UP THE GOOD WORK! THIS ARTICLE WAS GREAT–NOW TO FIGURE OUT WHY ONCE IN AWHILE, I’LL HAVE A GOOD DAY. WHAT IS HAPPENING THEN? USUALLY, WHEN I TRY TO COOK, I’LL GET MORE & MORE FRUSTRATED AS I TRY TO GET MY BRAIN TO DO THINGS THAT ONCE CAME 2ND NATURE TO ME! I TRY & SIT WHILE I WORK AS MUCH AS POSSIBLE. LUCKILY MY KITCHEN IS SMALL!

        • BONNIE JOHNSON
          May 06 - 4:23 pm

          JUST WENT TO YOUR FB PAGE & SHARED FROM THERE. YEAH! NOW, IF ANYONE READS IT…….THAT’S THE HARD PART!

    • Claire
      May 06 - 4:00 pm

      Hey Sandy,

      I keep printing a lot of Cort’s articles because they are so good and I want to share them with friends, family and physicians. The problem is I that I now have what amounts to a very large textbook ! :)

      • BONNIE JOHNSON
        May 06 - 4:07 pm

        SANDY–THAT’S ONE REASON I’M AFRAID TO GET A PRINTER! I ALWAYS FEEL IT’LL BE A WASTE OF TIME & THAT WE’RE THE ONLY ONES WHO TAKE THE TIME TO READ!

    • Nina
      May 06 - 5:11 pm

      Give your doc the link. Or print the article out ( use the print link on this page ) . Or…copy and paste the article to an email…( always attribute to Cort ie By Cort Johnson on May 6, 2014 ) , or …hmmm…I hope I wasn’t wrong to do so but I posted the link to this page on fb 2 seconds after I finished reading it. Love it. Thanks for all you do, Cort.

      • Cort Johnson
        May 06 - 8:17 pm

        I love it Nina – thanks :)

  3. Francesca
    May 06 - 2:20 pm

    I could not get coagulated on coumadin after open heart surgery. I suffered several mini strokes as they called them because the damage was questionable… but last year they said I had another stroke in my left eye again… I had to be on 20 mg of coumadin before my blood even began to budge to thin out. The doctor said in his 18 years of doing this he had never given someone more than 12 mg of coumadin in one day… 12 mg could even kill some one let alone 20 mg. I had to take herperin shots in my stomach and that worked. Now Klimas has me on 162 mg of aspirin daily…

    • Cort Johnson
      May 06 - 2:24 pm

      So you have very thickened blood? You should talk to Ken Lassesen about hypercoagulation.

      Just think if you have thickened blood and your arteries are more constricted more than they should be and you have low blood volume then you’ve got a lot of barriers in the way of getting your blood and your oxygen to where it should be….

      • issie
        May 06 - 6:17 pm

        Ive found turmeric and ginger help to thin my blood and helps with pain and inflammation. Some POTS people dont do well with it though.

        Some POTS people (more than not) use meds to constrict their veins. I’ve found this to not be the right approach for me. Things that vasodilate my veins, make me feel better. There is a fine line how much to do this though. Heat causes vasodilation and cold vasoconstricts.

        One of my docs feels there could be other reasons for vein dysfunction. His findings indicate pathogens causing blockages and inhibiting proper vein responses. Addressing things from this angle also addresses the immune system. So far, this has been my best attempt for recovery. I’m so much better than I’ve ever been. But stress causes my symptoms to be worse. I know I haven’t been as strict as I should have been on my protocol, and I’m paying for it.

        Issie

        • Cort Johnson
          May 06 - 8:19 pm

          I think it has to be a multifactorial problem; otherwise raising blood volume would cure everyone. It may be that blood volume is never raised enough to get past those pathogen blockages.

          Ken Lassesen mentioned similar blockages in one of his blogs.

          • issie
            May 06 - 11:16 pm

            Yes, Ken and I have talked. We both found that we were positive for pathogens and treating ourselves for that seems to be making big differences. His approach and my docs (therefore mine) are similar and that seems to be making a difference for both of us. Interestingly, these pathogens can be transferred from mother to unborn child and could explain the connections to families having issues.

            Issie

      • Lauren S.
        May 26 - 8:07 pm

        Hey Cort,

        Your readers with hypercoagulation problems should check out this article from an MD who has POTS and antiphospholipid syndrome:
        http://www.dysautonomiainternational.org/blog/wordpress/what-dysautonomia-patients-should-know-about-antiphospholipid-syndrome/

        I don’t have the cite on me, but there was a good article out of Italy earlier this year or late last year finding that repeated transient cerebral hypoperfusion did not lead to long term cognitive decline – good to know! Maybe if I wasn’t so brain foggy right now, I could remember what journal that was published in. ;)

        Cheers,
        Lauren

  4. Lane
    May 06 - 2:46 pm

    ME/CFS for 25 years…Dysautonomia dx’ed several years ago. i know that I have thick blood, but I’ve never been told my blood volume is low; but surely it is. What tests show low blood volume?

    • Cort Johnson
      May 06 - 7:47 pm

      The ‘How to test for blood volume’ blog is coming up.

    • acacia
      May 09 - 12:15 am

      Lane,

      I have had an echocardiograph. The report said the diameter of the inferior vena cava was narrowed. From this low blood volume was ‘inferred’.

      As far as I know, other blood volume tests are more complex. I await Cort’s blog.

      I love this subject, Cort, it’s right on target with me!

      • acacia
        May 09 - 12:17 am

        I have not ‘met’ anyone who had the echo, with the same results.
        Has anyone experienced this finding?

  5. Guido den Broeder
    May 06 - 3:01 pm

    I wonder what happens to the carotid body in case of throat infection, say by EBV.

  6. Karen
    May 06 - 4:26 pm

    I am an ME/FM/MCS and POTS patient — diagnosed 25 and 1 1/2 years ago respectively. My HR is very irregular. It ranges from the mid 50’s at rest, to the 150’s doing basic self-care. From lying down to standing, the increase is as much as 60 bpm — twice the 30 bpm increase required for a POTS diagnosis. Today’s high was 139 bpm using a can opener while standing. Any activity using my arms is problematic.

    Recently, I spoke with an ME expert (not in the capacity of a patient) and described the frustration of using heart-rate monitoring as a pacing tool, considering how significantly my HR varies. Her response was that everyone’s HR stays approximately the same from one day to the next, and that what I described was impossible.

    Does anyone else out there experience something similar?

    • Shannon
      May 06 - 5:13 pm

      Yes Karen, I feel like this quite often. I often feel my blood pressure feels the same darned way. Up and down, up and down. Despite BP pills. Quite disconcerting!

      I also have severe costochondritis, so I couldn’t tell you whether using my arms makes things worse or better. Not really. I try not to use my arms unless I have to, it just hurts that much.

    • Ruthie
      May 06 - 8:53 pm

      Karen- Yes, I can have swings like this. I also have both POTS and ME. Luckily I am able to tolerate meds which generally help control the extreme swings (up into the 150s) but my HR still goes into the 120s with basic self care some days even with meds.

      I’m surprised the ME expert you talked to wasn’t aware of the crossover between POTS and ME because it seems like most of them are becoming more aware of how frequently these two are co-morbid conditions.

  7. Shannon
    May 06 - 5:10 pm

    Cort, could POTS be responsible for my feeling like I never have enough oxygen? I have a fan on me 24/7 to help cool me down (I am always and forever too darned HOT), to help keep me awake, and to help me breathe – or at least feel like I can breathe better.

    I’m never gasping for air, not even after minor exertion. But I feel soooo much better when I’ve got my CPAP mask on, giving me more air. Or so it seems to me.

    I certainly have symptoms for POTS and will be asking my doc about it next visit.

    • Cort Johnson
      May 06 - 8:14 pm

      That desire for more air certainly sounds like your body wants more oxygen…I wonder if the heat is associated autonomic nervous system problems that cause poor cooling. – All from a laymen, of course. Good luck with your doctor.

      I don’t gasp for air either but taking deep breaths has not been easy. My guess is that’s a milder manifestation of something that shows up more severely others.

      • Shannon
        May 11 - 11:27 pm

        Cort, I do have high blood pressure (POTS?), so I always thought that was why I was always too darned hot. That and I could be pre-menopausal (I’m only 43, but it could happen).

        Been having a hell of a time finding a family practitioner since mine moved away in 2011. So with only access to a walk-in clinic (at least they refill my ‘scripts, most of the time), I am kinda stuck with whatever doctor I get at the time. And no likelihood of referrals to specialists.

        Will find one eventually. Grrr! lol

        Hoping you, and everyone reading, has the best day possible.
        Sunshine and Smiles!

    • Gijs
      May 07 - 3:17 am

      I have the same problem. Always feeling a short of air. It is terrible.

      • Betsy
        May 07 - 4:40 pm

        All those who have shortness of breath might want to make sure you don’t have too many PVC’s. I’m currently trying to get mine under control. After years of being told they were benign I’m now told mine are “malignant” and might have even damaged my heart. I asked my cardiologist last week about blood volume and he said my hematocrit and hemoglobin were ok, so I’m looking forward to your upcoming blog Cort. Sounds like there’s more to it than that……

        • Shannon
          May 11 - 11:30 pm

          Had my heart stress tested et al only a few years ago. Everything was normal then. The feeling of wanting more oxygen is nothing new. Then again it’s not at the top of my list of symptoms to pester a doctor about either. You know how you are lucky to discuss only a few things at a time.

          I guess I’ll have to write everything down I want looked into or to discuss and bring it with me next time. More multiple trips to the walk-in clinic, bleh.

    • suzy
      Jun 19 - 6:22 pm

      I had a stress test,after walking just a min,my bp went over 200.I’m hot sweat so bad,and i feel better with my cpap on.I have always said i feel like not getting enough blood to my brain.Been over 20 yrs,now my thyroid not working.

  8. Nina
    May 06 - 5:15 pm
  9. issie
    May 06 - 5:47 pm

    The criteria for POTS is at least a 30 point increase in heart rate from lying to standing or a heart rate above 120 with standing. Blood pressure response isn’t as much of a marker. Some of us have higher bp with standing, but with all of us there is a definite drop in bp at some point. That’s where the orthostatic part comes in. When this happens it leads to the tachycardia part of the syndrome, trying to increase our bp to increase delivery of blood and oxygen to vital areas like our heart and brain. Many of us have low volume and some find saline infusions to help them. But, that’s only a temp help. Many have blood pooling in lower extremities too. Many find compression stockings and abdominal binders to be of benefit.

    There are many subset types of us. What may work for one, will be horrible for another.

    I appreciated this blog Cort. The more exposure we get, the closer we get to finding answers. Thank you!

    Issie

    • Cort Johnson
      May 06 - 8:15 pm

      I didn’t mention in the blog that hyperadrenergic POTS patients – the ones with the most sympathetic nervous system activation – had the worst blood volume of all – which makes sense if the sympathetic nervous system activation is an attempt to deal with the reduced blood flows to head. I imagine that people with hyperadrenergic POTS also have the worst blood flows to the brain.

      • issie
        May 06 - 11:01 pm

        I’m one of the HyperPOTS people. What has been found with us, is there is also elevated NE (noriepi) with standing. That can cause more issues with what we call surges. It’s what gives one the fight or flight feelings. Not pleasant from an emotional standpoint. But, may be our bodies way of compensation. It causes more vasodilation, and increases the heart rate. Many of the things that docs try to suppress with POTS because of how uncomfortable it makes us, may be vitally necessary for our function. Some of us have tried increasing our NE levels (despite already high levels). You would think this would make us worse, but it didn’t. Most of us felt better. But it was short lived. We found that after 3 days it was no longer effective. (A little experiment many of us tried on our own.) We wondered if trying to keep NE at a higher more steady level would stop the surges. It helped for awhile.

        With my symptoms, I think the reaction is pretty intense. But, most of us HyperPOTS people thankfully are not fainters. Those of us with higher standing bp, seem to be able to have enough warning to get ourselves down before we fall down, and avoid a faint.

        Most of us with HyperPOTS also have MCAS and a good many of us have EDS. We call it the trilogy. You would think with connective tissue disorders with EDS we would have lax veins, overly stretchy and would need to vasoconstrict. Some do, but many of us dont feel this is true for us. As I mentioned earlier, there are different subsets of us and what works for one will not work for another. Because of high bps with this type, increasing bp with things that increase it even more is not the best thing for us. So the traditional POTS meds, dont work well for me.

        Issie

  10. Ruthie
    May 06 - 9:00 pm

    Another great article Cort. Thanks!

    I’m sorry if I missed it, but I was wondering if there was link to the article you were citing under Low Blood Volume. The part about low oxygen levels triggering issues at the carotid body?

    • Cort Johnson
      May 06 - 9:07 pm

      Sorry about that – http://www.ncbi.nlm.nih.gov/pubmed/24711524

      Hypertension. 2014 Apr 7. [Epub ahead of print]
      Reduced Cerebral Blood Flow With Orthostasis Precedes Hypocapnic Hyperpnea, Sympathetic Activation, and Postural Tachycardia Syndrome.
      Del Pozzi AT1, Schwartz CE, Tewari D, Medow MS, Stewart JM.

  11. Dominie Bush
    May 06 - 9:07 pm

    I have had that “brain starved for oxygen” feeling for many, many years with CFIDS. Several years ago, my husband noticed a can of something called BoostOxygen in sporting goods at Walmart and bought it for me. It helped a lot, and I bought many more cans online at amazon and used it for years when my brain felt like it was literally dying from lack of oxygen. My husband suggested that I ask my doc (internal medicine) if he could prescribe oxygen for me, but the doc said my blood oxygen level wasn’t low enough. However, there may be a difference between oxygen level in the blood and what the brain (or portions of it) are receiving. I no longer need BoostOxygen on a daily basis. I don’t know exactly why, but I am improving.

    Another thing that helped me with the debilitating “brain dying feeling” was sniffing Peace and Calming, a Young Living essential oil. (I get no compensation for saying this.) I have done this for many years, and it rarely fails to help me. I put several drops on my palms, rub my hands together, and inhale for a couple of minutes with my hands in front of my nose and face. The molecules use the olfactory system to affect the limbic portion of the brain. I have carried a bottle of this with me for years to rescue me from debilitating brain problems, which became considerably worse after working in mold-filled building in 2005. It helps me to lie down with my feet above my heart and breathe the P&C molecules for a few minutes. This method has rescued me time and time again when I have had to be somewhere (like work), but my brain was crashed and I felt like I was dying. It would take me from miserably “flat-lined” to feeling well and functioning.

    This may sound weird, but several months ago, I started putting 1/4 teaspoon of baking soda in 16 oz. of water twice a day. The alkalization has put an end to my problem with chronic cold sores (HSV-1) that I’ve suffered from for years. I read that when your pH gets too acidic this can cause pain, disease, and even cancer and death. There is a certain amount of sodium in baking soda, and I feel like I am retaining fluid, but somehow overall I feel better! I have been pondering if this is because my blood volume is kept higher. I have no idea. I’m not a doc. Just sharing some strange things that I have been doing to combat my CFIDS neurological / immunological problems so that I can function from day to day.

    I don’t recommend that anyone else try these things, because we are all unique. But so far, these have been my best helps in dealing with my CFIDS “brain-crashing” problem. No wonder “normal” people think we are crazy(!)……but at least medical science is learning more about the brain, POTS, blood flow, etc. I am hopeful that they will eventually get this problem figured out!

    • issie
      May 06 - 11:41 pm

      Many POTS people complain of “air hunger” and hyperventilating. There are many “theories” out on this. An increase of CO2 causes an increase in brain blood flow. Here’s an article describing how this happens.

      http://www.ncbi.nlm.nih.gov/books/NBK53082/

      With me, I found a strong connection with this when I snorkel. It almost always will cause me to have a POTS attack and I come out hyperventilating. Whether or not the salt from the water may be causing too much constriction and causing more need of CO2 for proper blood flow to the brain. Or there may be the need to expel a build up of CO2 from rebreathing CO2 from the snorkel -not sure which. I have no way to know exactly what is happening other than knowing there’s a problem.

      Just because a person has enough O2 in their blood doesn’t mean there’s enough. If there is low blood volume, there will be a higher concentration of O2. But, that still may not be enough and may not be getting to where its vitally necessary.

      Issie

      • Cort Johnson
        May 08 - 7:37 am

        Here’s some more information on hyperventilation – it increases oxygen levels too much, which drops the C02 levels, causing the blood vessels to constrict and reducing blood flows to the brain. It can cause a feeling of ‘air-hunger’

        “Over-breathing can cause a drop in the level of carbon dioxide, and an increase in the level of oxygen in the body.

        Possible Causes

        The factors that are found to trigger over-breathing are, stress or anxiety, strokes, heart attacks, and panic attacks. An injury to the head, lung diseases, infections, like pneumonia and sepsis, can also cause this condition.

        Sometimes, metabolic acidosis can also trigger this condiion. In metabolic acidosis, the acidity of the blood increases. In such a situation, over-breathing can be a mechanism to increase the level of oxygen in the body, and thereby, lower the acidity of blood. Lastly, overexertion or strenuous physical activity can also cause over-breathing.

        Hyperventilation Signs

        This condition causes the level of carbon dioxide in the body to fall below the normal range, and the level of oxygen to rise. A drop in the level of carbon dioxide in the body changes the pH of blood, and makes it more alkaline. This causes constriction of the blood vessels, that supply blood and oxygen to the vital organs, like the brain. This in turn, reduces the supply of oxygen to the vital organs and tissues, and produces a feeling of lack of oxygen or air in the body, along with the following symptoms:

        Read more at Buzzle: http://www.buzzle.com/articles/hyperventilation-symptoms.html

        • issie
          May 08 - 7:59 pm

          It seems, that according to a POTS forum, many POTS people test high for Co2. Some of us have found that breathing into a paper bag, which would increase Co2, doesn’t make us feel better. (What we are usually told to do for hyperventilation. Some have said that makes them much worse.) So we possibly are trying to expel too much Co2, and need more O2. In my research I found that there can be a build up of Co2 in a snorkel and you can rebreath it. Unless I had access for proper testing of my response, I can’t say for certain what is really happening though.

          Thanks for your research on this Cort. I enjoy reading that sort of info. I like to figure out the WHY of things and that can sometimes get pretty deep and confusing. Especially when what seems to be the cause, could have another meaning on the flip side. And what is normally suggested as a treatment, could make the response more intensified and worse.

          Issie

  12. issie
    May 07 - 1:31 am

    One other thing you may find of interest is a seeming connection to NO (nitric oxide). Different subsets are found to be either deficient or have too much. There are also different types of NO and they affect different parts of the body in different ways.

    http://www.nymc.edu/fhp/centers/syncope/Microcirculatory%20Endothelial%20Cell%20Dysfunction%20(nitric%20oxide)%20in%20Low%20Flow%20POTS.htm

    Issie

  13. Kym Russell
    May 07 - 3:14 pm

    What type of specialist diagnoses POTS? My primary care doctors claims that she doesn’t know what POTS is…who in the medical community does?

    • issie
      May 08 - 7:09 am

      There are very few docs who know and understand POTS. Some do not realize there are many subset types and try to treat us all the same way. Some dont keep up with the latest. I was DXd at Mayo in AZ. It was a team approach. I had a tilt table test with a cardiologist who is an electrophysiologist. My primary doc for treatment is a neurologist. And I have an allergist/immunologist. My best treatment approach is an internist who specializes in Lyme and autoimmune diseases.

      We are slowly getting awareness out. We feel there may be many misdiagnosed who have POTS. Here is a video on POTS. It’s focus is mainly on one subset type. This video was made before we got the different subset types figured out and it was realized that not all of us can be treated the same. It gives a good overview of it though and what we daily live with.

      http://m.youtube.com/watch?v=8UPMYNkm6Bc&feature=player_embedded

      Issie

    • Cort Johnson
      May 09 - 10:35 am

      Check out Dysautonomia International for a list of POTS aware docs. :)

  14. Imogen Mitchell
    May 07 - 3:49 pm

    I was wondering if the reason I have gasped for breath and felt totally flawed after taking sumatriptan for migraine could be because of my blood volume? I’ve had M.E for at least 4 years. Great article Cort.

  15. Imogen Mitchell
    May 07 - 3:50 pm

    I was wondering if the reason I have gasped for breath and felt totally flawed after taking triptans for migraine could be because of my blood volume? I’ve had M.E for at least 4 years. Great article Cort.

    • Cort Johnson
      May 08 - 3:52 am

      Thanks Imogen. I wonder if they’ve ever looked at low blood volume and migraine? Good luck :)

  16. […] Reduced blood flows to the brain sound pretty dire and the effects can be significant. Let’s see what research tells about blood flows to the brain in ME/CFS and POTS. Read more […]

  17. Bertiedog
    May 09 - 10:00 am

    I think I have a tendency to HyperPOTS but I find that my pulse will go up to around 103 beats a minute especially in the afternoons. I take a low dose betablocker on waking so I don’t think its so bad in the morning as long as I don’t stand around too long.

    Taking another dose say 20 mg Propananol in the afternoon will bring my pulse back down into the 80s even after say a 25 minute walk.

    My normal pulse would be around 72 beats a minute so I guess I do fit the criteria for HyperPOTS. I haven’t seen a doctor at all about this because I like in the UK and they don’t take the illness seriously. I have to say that I am very interested in Professor Newton’s work, I think its great that she is in the UK and so we are contributing something to science!

    Thanks Cort for your great articles, I always look out for them. Hope you don’t mind but I do include some of your information about Fibromyalgia in a newsletter I put together but I always attribute the information to you. Hope that is ok.

    Pam

    • Cort Johnson
      May 09 - 10:36 am

      Yah! Thanks Pam – I love it!

      Some really great stuff on the autonomic nervous system coming out of the UK :)

    • Karen
      May 10 - 7:56 am

      Hello Pam,

      You mentioned fitting the criteria for HyperPOTS. By this, do you mean that your blood pressure, as well as your heart rate, also increases significantly when standing? This is what I experience — seemingly the most significant criteria that differentiates Hyper and Primary POTS. Most articles I’ve read recommend that beta blockers not be used by HyperPOTS patients.

      As with most things in life, there are many differing opinions regarding treatments for these poorly-understood medical conditions.

      • issie
        May 10 - 10:46 pm

        The reason most of us HyperPOTS people dont use beta blockers is we have MCAS to go along with it. The beta blockers can cause more issues with mast cell degranulation. We do tend to have high bps with standing. But the main way the docs determine HyperPOTS is we have an increase in NE above 600 with standing. Most of us dont faint, just come close. This is different than those whose bps tend to run low, they are the ones more likely to faint.

        Issie

  18. […] Read more: The Blood (Volume) Will Out: Is Ischemia A Key in Both POTS and Chronic Fatigue Syndrome? http://www.cortjohnson.org/blog/2014/05/06/blood-volume-will-ischemia-key-pots-chronic-fatigue-syndr… […]

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