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!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

Pacing/treatment for orthostatic intolerance

Discussion in 'Lifestyle Management' started by Sasha, Mar 1, 2010.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    8,083
    Likes:
    6,892
    UK
    After decades of having ME/CFS I have just realised what "orthostatic intolerance" means (doh!) thanks to this site and that it may be one of my most activity-limiting symptoms.

    I get tired quickly when standing, can't walk for very long (though longer than I can stand) and can't sit normally in an armchair for very long. My day mostly consists of sitting with my feet up on the sofa and even then, I have to lie down for 15 mins each hour to recover. And I lie down for an hour three times a day to keep the fatigue under control.

    I thought I had been getting tired because of the energy I was expending by being vertical but now that I've read about OI, I've realised I'm probably not expending much energy sitting with my feet up but that whatever drives OI is making me feel tired.

    Two questions, I guess: (1) is there a different pacing regimen for OI than that recommended for ME/CFS-related fatigue that I should be following? (2) are there any treatments specifically for OI that we can safely use ourselves (I'm a bit scared of self-administering salty water in case of hypertension, for example) or ask our doctors for? Particularly well-documented stuff that my UK GP would recognise as credible and as offering him good guidance?

    If I have blindly missed some thread that has answered my questions, my apologies and please direct me! I've looked but have just become a bit confused.

    ETA: Since posting this I've magically c ome across Cort's very thorough page on OI. My first question still stands, though, and I'm still wondering whether there is a guide to treatment for doctors that I could present to my GP; or whether anyone knows what sort of specialist I should be asking to be referred to for OI. Self-treatment looks as though it might be a bit dangerous because different things seem to be linked to OI (both hypo- and hypertension, if I've understood correctly) and which treatment you should go for depends which end of the spectrum you're on. Or not. I'm confused! :confused:
  2. Lesley

    Lesley Senior Member

    Messages:
    188
    Likes:
    0
    Southeastern US
    Shasha,

    I may have just the kind of article you are looking for, but it will take some digging. I also have some personal insight, as my daughter and I have different variations of OI. I have to go now, but will be back later.

    Lesley
  3. Sasha

    Sasha Fine, thank you

    Messages:
    8,083
    Likes:
    6,892
    UK
    Thanks, Lesley, I'll look forward to your post!
  4. kerrilyn

    kerrilyn Senior Member

    Messages:
    246
    Likes:
    2
    Sasha, me too! I only recently started reading about OI (I didn't understand it and shrugged it off previously that it didn't pertain to me) but have now realize it makes some sense to what I experience. But I've not figured out which variation suits me more. So Lesley, I'd be interested in seeing that article too. Thanks.
  5. Lesley

    Lesley Senior Member

    Messages:
    188
    Likes:
    0
    Southeastern US
  6. Lesley

    Lesley Senior Member

    Messages:
    188
    Likes:
    0
    Southeastern US
    One more article by the same doctor as the second article above. This one is not written for doctors. I love the illustration, but since most of us have low blood volume you actually have to imagine the level of blood in the body is even lower.

    http://knol.google.com/k/postural-tachycardia-syndrome#
  7. Carrigon

    Carrigon Senior Member

    Messages:
    805
    Likes:
    72
    PA, USA
  8. Sasha

    Sasha Fine, thank you

    Messages:
    8,083
    Likes:
    6,892
    UK
    Thanks for the links to the articles in both your messages, Lesley - they're really excellent resources and something that I can show my GP. Thanks very much for looking them out for me.
  9. Sasha

    Sasha Fine, thank you

    Messages:
    8,083
    Likes:
    6,892
    UK
  10. kerrilyn

    kerrilyn Senior Member

    Messages:
    246
    Likes:
    2
    Ok, I'm trying to understand OI better but it still confuses me. I have low blood pressure and I think low heart rate. I can only get our automatic BP monitor to work sporatically at best because I think my heart rate is too low (I get an error message). But my husband can get it to work correctly every time, so the machine is not broken. I am :)

    Yesterday I went to my naturopath and laid down during my app't because I was in too much pain to sit. I asked her to take my blood pressure while I was laying down and then when I stood up. I don't know what the actual numbers were but she said it dropped 10 points upon standing. Not too bad. She didn't say anything about heart rate.

    I definitely have symptoms of autonomic dysfunction and some symptoms of POTS, but I don't notice that my heart races or pounds when I stand up. So I'm not sure if it pertains to me. However, if I try to exercise (some days walking) or climb stairs I really feel like I'm going to faint, like there is not enough blood/oxygen getting to my brain and my heart rate feels strange then. I think I instinctively avoid standing for too long to eliminate symptoms. Humid summers makes everything much worse.

    I read other things to avoid here: http://www.dinet.org/what_to_avoid.htm It's interesting because I've noticed many of these things have made me feel worse for years and I didn't know why. Just to name a few: I get lightheaded if I bend at the waist. Epinephrine at the dentist is making my heart rate more each time (I never used to notice it). I'm really sensitive to alcohol, I haven't touched any in 20 years because it caused intense leg cramps/pain (blood pooling). I've had two surgeries and both times I had to stay in the recovery room many hours longer than patients who had surgery after me because my BP was low and I couldn't stand up. I never saw these symptoms pulled together to make sense before.

    Two things concern me because that link also says not to take melatonin, but I take it every night to sleep. I can't sleep without it. And it mentions flying, which I'm thinking of doing for the first time. Oh uh. What's your thoughts on them?

    I guess the next thing to figure out what is my actual heart rate, sitting and standing. If it doesn't raise significantly with standing then I guess I have some sort of other dysfunction but not POTS right?
  11. Sasha

    Sasha Fine, thank you

    Messages:
    8,083
    Likes:
    6,892
    UK
    That's what I did first - if your heart rate standing by 10 mins is 30 bpm higher than when you were lying down, it indicates OI, I believe, but the whole area looks complicated to me. I really suspected OI initially because I find it harder to stand still than to walk. Beyond strongly suspecting that I have OI, I wouldn't trust my knowledge of it to properly self-diagnose or manage, which is why I'm going to my GP. I spoke to him on the phone about it to set up an appointment since I posted and he says he has other patients with OI (it's also a feature of Parkinson's and diabetes for some people) so most doctors are probably somewhat familiar with it.

    I'd recommend going to a doctor if you can (not sure a naturopath would be qualified for something like this), though I realise that it's easy for me to say that in the UK because it doesn't cost anything! But it seems to me that OI is a serious condition that requires proper medical attention and possibly specialist treatment. I think it's one to get professional help for.

    I realise I haven't answered your questions (I don't know the answers!) but I hope this is helpful! Perhaps others with more experience of being treated for OI/POTS have some more specific comments about what you asked?
  12. OurDayWillCome

    OurDayWillCome

    Messages:
    61
    Likes:
    0
  13. kerrilyn

    kerrilyn Senior Member

    Messages:
    246
    Likes:
    2
    I've been doing more reading. It's fascinating info and I'm having a lot of aha moments. I can't believe how much I shrugged all these symptoms off in the past and thought the OI info listed in the Canadian CFS criteria didn't pertain to me. I'm really going to pay more attention to it this summer, that's the worst time for me. And I wish I'd known what it was 20 years ago, when in a lot of ways the symptoms were worse than they are now. Right now I'm think I'm in the delayed orthostatic hypotension or orthostatic narrowing of pulse pressure categories rather than POTS but I'll have to check it out further.

    Sasha, I'm in Canada so I don't have to pay either but my doctor is an idiot (to put it frankly). So I avoid seeing her like the plague and it's forced me to gather info on my own. Good luck with your test. :)

    Here are some articles that talk a bit more about sub-types:
    http://www.mefmaction.net/Patients/Articles/Symptoms/OIinCFSDB1/tabid/231/Default.aspx
    http://aboutmecfs.org/Trt/TrtOIBellTest.aspx
    http://www.pediatricnetwork.org/medical/CFS/bell-commentary/oi-intro.htm
    http://www.wellsphere.com/lyme-dise...D2713CE13?query=Neurally Mediated Hypotension

    The last one was interesting to me because it talks about raising the head of the bed slightly. I cannot lay flat without elevating my head slightly, if I don't, I get very nauseated.
  14. anne

    anne Guest

    Thanks so much for this information, I'm looking forward to reading it. I certainly have trouble figuring out where my CFS begins and my OI ends. But my current crash began with a reoccurrence of the OI symptoms (after 4 good years) that got steadily worse, until the fatigue and vertigo set it.
  15. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,793
    Likes:
    1,462
    Florida
  16. kerrilyn

    kerrilyn Senior Member

    Messages:
    246
    Likes:
    2
    Thanks for the info Marcia.

    I did the poor men's tilt table test today and I learned I can last 30 mins standing before I feel I could pass out. Nothing showed up immediately upon standing, that's why I didn't think that I had POTS. My diastolic rate is all over the place and the longer I stand, the higher my heart rate climbs as the diastolic drops. So I think I fall into the POTS category but only because my heart rate is trying to compensate for the delayed Orthostatic diastolic hypotension.
  17. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,793
    Likes:
    1,462
    Florida
    Hi again,

    I had to learn all this a couple of years ago too ... fun, huh ? lol ...

    I spent months researching OI and was disappointed that I couldn't find much on holistic treatments for this. What I found holistic wise was on the Dinet board but only by reading over page after page and looking for clues. That's how I learned that someone had treated theirs by using B vitamins and another by treating their heavy metals.

    What I've learned on my own is that salt is critical to keep my BP up to a normal level. I only use 2500 - 3000 mg a day. And I still add salt to my water bottle several times a day. Sometimes when I start to feel puny, I'll just eat a small handful of salt (about 1/4 tsp) and more often than not it helps .... BTW. I found out the hard way that salt needs to dissolve in your mouth or in water before drinking it or else it can hurt your stomach. :eek:

    Then last year, I started experiementing with Solgar Essential aminos and was surprised that it helped my OI so much.

    I was on carnitine and a few other aminos but stopped them because I read that our aminos need to be in sync or it would throw off the Kreb's cycle. Essential aminos break down into all the other aminos our bodies need if our bodies are working properly.

    Well, my brain just pooped out so I'm out of here for today ... :Retro redface: ... tc ... Marcia
  18. Sunday

    Sunday Senior Member

    Messages:
    732
    Likes:
    31
    I appreciate the info too, Marcia. And everybody else's contributions. Just learning.
  19. glenp

    glenp "and this too shall pass"

    Messages:
    753
    Likes:
    16
    Vancouver Canada suburbs
    I have found some dysautonomia symptoms to be delayed. - SHOPPING - For years I thought that I had panic attacks when I went shopping but then found out that it was part of the dysautonomia, as long as I keep moving I am ok. It seems to be different for everyone.

    glenp

See more popular forum discussions.

Share This Page