1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

Dr. Bell's 5 subtypes of OI

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by kerrilyn, Mar 7, 2010.

  1. kerrilyn

    kerrilyn Senior Member

    Messages:
    246
    Likes:
    2
    Not sure if this is in the right section, and I was talking about it in another thread - but I think I was hijacking that thread and have some other specific questions so I started this one.

    I've been trying to understand orthostatic intolerance and found Dr. Bell's info about 5 sub-types:
    http://www.pediatricnetwork.org/medical/CFS/bell-commentary/oi-intro.htm

    I did the poor men's tilt table test today and found that I can stand for 30 mins. After that, I quickly feel dreadful and need to sit IMMEDIATELY or feel like I could faint.

    I had to make a chart of my BP readings and heart rate (taking every 5-10 mins) to make sense of it all. Nothing showed up immediately upon standing, that's why I've never thought I had POTS. And POTS is the easiest to find info about.

    My systolic rate stays the same throughout, but my diastolic rate is all over the place. It is working it's butt off to keep me standing (ping ponging up and down). The longer I stand the higher my heart rate climbs, then finally it starts to drop again when the the diastolic rate drops more quickly.

    I can fit in POTS category if I go by Dr. Bell's info:
    "A healthy person will not change their heart rate standing up for an hour. In a person with POTS, the heart rate increases 28 beats per minute (bpm). Some experts say the heart rate should exceed 120 bpm to have POTS. But either way, this increase occurs frequently in CFS. I think the increase in heart rate is linked to the decrease in blood volume. (Orthostatic intolerance has been called Idiopathic hypovolemia in the past)"

    My heart rate only got up to 90 bpm (not 120) and I was starting to feel pretty awful. It only went up 25 bpm before I really wanted to lay down and then it started to fall as the diastolic rate fell too.

    But I think the HR raising is because it's trying to compensate for the diastolic hypotension. Dr. Bell said "This represents a fall in the lower number of the BP, and seems to be the least frequent abnormality in patients with CFS I have tested."

    I was wondering does anyone else on the forum have this particular OI problem?

    What is Neurally mediated hypotension then in his listings, because he doesn't use that term in his article. But NMH and POTS are most 'popular' when searching the net, I couldn't find a lot of info about Orthostatic diastolic hypotension alone for example.
  2. Kati

    Kati Patient in training

    Messages:
    1,895
    Likes:
    1,081
    Thank you so much Kerrrilyn, this helps-

    I have as far as I know systolic hypotension, just from my rheumy's test in her office, which consisted laying down, getting a BP done and then standing up, getting a BP done. Results: 140/80 and 110/80.
    In a different dr office, my standing BP was 64/45 and she didn't believe it, took it again and it was back to normal. I didn't feel too good at 64/49 but she didn't believe me.

    I would like to be formally tested because at times I notice that when I sit up and exert myself mentally, I get a bout of OI, and have feelings of passing out, chest pain and I feel I can't think anymore (I feel really stoopid). I really wish some doctor- anyone- could understand that.
  3. kerrilyn

    kerrilyn Senior Member

    Messages:
    246
    Likes:
    2
    Glad it helped you Kati, it's interesting to see the sub-types info I think.

    Today, when I was lying down it was 110/51 (when I finally relaxed), the highest it got standing was 109/80 (after a 1/2 hr) and then 10 mins later (still standing right before I laid down) it was back down to 108/63. My diastolic just bounced around up and down with each reading. Now I'm not even sure if it's diastolic hypo or hyper primarily and which way my body is trying to compensate for it, but the drops were most dramatic. I didn't necessarily notice symptoms by that rate bouncing till the higher my HR climbed in the process while the diastolic bounced low again, then I definitely felt much worse.

    Since I was a teenager and had even lower BP than I do now, every doctor has just been thrilled that is was not high. But what good is a low BP if you feel like crap all the time? And amazing none of them checked mine more than once, always sitting.
  4. kerrilyn

    kerrilyn Senior Member

    Messages:
    246
    Likes:
    2
    Kati, I was doing more searching and read that if your BP drops when standing it could be a sign of adrenal fatigue/insufficiency. Some sites specify it is more likely if the systolic number doesn't go up 4-10 points, or if it drops upon standing. It's called Ragland's sign or Ragland's test (take BP laying down and then stand up and take it again), you may want to look into that further.
  5. Sasha

    Sasha Fine, thank you

    Messages:
    7,865
    Likes:
    6,268
    UK
    Thanks for posting this, kerrilyn, it's a very interesting thread (I think the thread you were worried about hijacking might have been mine but don't worry, I certainly didn't feel that way! I don't think I answered the comment you put on it very well though!). That Dr Bell reference is very interesting and helpful.
  6. spindrift

    spindrift Plays With Voodoo Dollies

    Messages:
    280
    Likes:
    2
    Type 4

    I have been having real bad OI. So this morning I took my BP while laying:
    110/64, pulse 74

    I stood up and after 1 minute:
    153/104, pulse 90

    After 5 minutes:
    170/127, pulse 97

    at this point I started seeing little white dots everywhere, so I laid back back down and stopped
    checking.:In bed:

    It would be interesting to see how others do on the poor mans tilt test.
  7. kerrilyn

    kerrilyn Senior Member

    Messages:
    246
    Likes:
    2
    Spindrift,
    That is interesting, you and I have very different results for example.

    In the last paragraph of Dr. Bell's article he writes "In the next segment I will describe the results in the first twenty new patients I have tested and how it documents disability. This is important as it will directly measure treatment responses with something other than symptom improvement."

    That would have been in the June 2000 Lyndonville Newsletter. Unfortunately that pediatric network site skips over that link. Does anyone have the article he mentions?

    This is 10 years old now, but I found another link that mentions the sub-type variations too. http://aboutmecfs.org/Trt/TrtOIIntro.aspx and at the bottom of that article are links to other articles, which are very good at explaining OI. Maybe I'll finally start to understand all this info soon. ;)
  8. spindrift

    spindrift Plays With Voodoo Dollies

    Messages:
    280
    Likes:
    2
    This might be a bit crazy, but I'll do just about anything to function a bit better.
    I ordered myself a g-suit.

    http://www.oiresource.com/gsuit.htm

    I'll let you know how it works once I have tried it.
  9. kerrilyn

    kerrilyn Senior Member

    Messages:
    246
    Likes:
    2
    I don't think anything is crazy if it helps you feel better. Good luck. I definitely want to hear about it!

    About 15 years ago I had a few years really severe leg cramps - I thought I'd lose my mind. And docs had no idea what was causing it. Now, I think it was from excess blood pooling. I bought these crazy massager 'pants' that you slipped on and they filled up with air and pulsed. They didn't seem to help with my leg cramps much so I gave them away. Now I wish I'd kept them because maybe they would have been useful for OI.

    Sasha, I just had some different questions that I didn't want to bury in your thread :)
  10. kerrilyn

    kerrilyn Senior Member

    Messages:
    246
    Likes:
    2
  11. spindrift

    spindrift Plays With Voodoo Dollies

    Messages:
    280
    Likes:
    2
    Yes, that is an excellent website with incredible information.

    I told a friend of mine who is pilot that I was getting a g-suit and he was very excited and
    explained to me how they work for fighter pilots and his experiences when doing rolls in an
    airplane. He volunteered to come and help me fit the g-suit when I get it :)
  12. Chris

    Chris Senior Member

    Messages:
    578
    Likes:
    175
    Victoria, BC
    OI and BP

    Hi--very interesting thread--thanks! One of my problems is periodic spikes of high BP with chest pain and general feeling lousy; so I tried the poor man's tilt, as follows:
    sitting--126/76, Heart Rate 68
    5 mins standing, 125/88, HR 80
    10 mins standing, 118/85, HR 80; nothing exceptional there, I think. But:
    20 mins later realized I felt agitated, had chest tightness and discomfort--158/101, HR 67.

    So the little experiment had set off one of my spikes--not a big one, but there; a bit of breathing meditation began to bring it down quite rapidly, and an hour later it was 129/92. So I learned something--though I felt very uncomfortable and unstable while standing--don't think I would have lasted 20, let alone 30, mins, the real result came a bit later. So something I can take to a doc, if s/he will listen. Thanks! Chris
  13. glenp

    glenp "and this too shall pass"

    Messages:
    753
    Likes:
    16
    Vancouver Canada suburbs
    dysautonomia

    If you google dysautonomia you will find many variatiions of the disturbances in the autonomic nervous system. My symproms vary and change.

    glen
  14. kerrilyn

    kerrilyn Senior Member

    Messages:
    246
    Likes:
    2
    Glen, I think mine vary and change too. At the very least they have changed over the years.

See more popular forum discussions.

Share This Page