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Is standing tiring but not dizzy when you stand up? Get tested for treatable OI!

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Sasha, Mar 13, 2010.

  1. Sasha

    Sasha Fine, thank you

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    For years I've noticed that I find standing still more tiring than walking, even though I can walk very little, and that I have to sit with my feet up as much as possible because it's tiring when they're on the ground. This weird observation is common with CFS, but I didn't connect it with any of the "orthostatic stuff" - orthostatic intolerance, postural orthostatic tachycardia syndrome (POTS), or neurally mediated hypotension (NMH) because I don't feel dizzy or lightheaded when I stand up from sitting; or indeed, however long I stand.

    However, I read that difficulty standing for long is strongly suggestive of OI and that these other symptoms aren't always present so I did Dr Bell's "poor man's tilt test" (you take your heart rate at intervals first supine then standing for up to 30 minutes) and if your rate increases by over about 30 beats/minute, it indicates OI (POTS and NHM are subsets of OI).

    My heart rate went up 30 bpm so I went to my doctor for proper blood pressure measurements as well as accurate heart rate measurements while repeating the test and I got the diagnosis confirmed. I've been posting alot about OI in the last week and quite a few other people also said that they had no idea that they had OI until they got tested, again because they don't feel dizzy on standing and misunderstood about this being a major or even necessary symptom.

    OI is partly treatable! :D:D:D This is why it's important to get yourself tested if you suspect (from your difficulty standing for long) that you might have it. Treatments include raising the head of your bed, increasing your salt and water intake (under medical supervision), wearing medically prescribed compression tights, eating small, frequent meals rather than a few large ones, doing certain strengthening exercise to get your blood to where it needs to be, etc. There are also drug interventions as a next stage. Cort, as always, has produced an excellent information page on it.

    OI is basically about the body's failure to apply the mechanisms to keep your blood volume from shifting down into your legs and abdomen due to gravity when you stand. Astronauts get this when they come home from space and there is lots of research on it. There's a huge overlap with CFS - on it's own, OI is severely disabling and causes exercise intolerance. One estimate I read talked about 66% of CFS patients having OI, so I think it's worth us doing the test!

    I'm all excited about having identifed a potentially treatable (though not curable) part of my CFS and am looking forward to trying the various interventions over the next few weeks. I'd like to encourage everyone to consider testing - I'm beginning to think it should be done as standard when we're diagnosed.
  2. HopingSince88

    HopingSince88 Senior Member

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    This is interesting, Sasha. I never considered OI for myself because I don't get lightheaded or dizzy. I share with you that it is easier to walk (albeit slowly) rather than to just stand in one place. I will test myself on this tomorrow. Thanks for that heads up!
  3. Abraxas

    Abraxas Senior Member

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    Thanks for the info Sasha. I've definitely noticed standing more tiring than walking too (at the time of the activity), so I might give the poor man's tilt test a try. Apart from more accurate BP measurements, was the test your Doc carried out the same procedure that you did yourself at home?
  4. Sasha

    Sasha Fine, thank you

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    Pretty much - I had been lying on a couch in a side room waiting for my appointment for 20 mins when he came to find me so I just stayed lying down while he checked my pulse rate with a finger pulse measuring thing and took my blood pressure (just the usual inflatable cuff, nothing fancy). Then I stood up and he did pulse & BP again; then 5 mins later; then 5 mins later; and then I took my pulse every 5 mins with the finger gadget until he came back when I'd been standing for 30 mins and took my BP again (he was constantly in and out of the room because he was seeing other patients at the same time).

    I measured my pulse at home just with my fingers on my pulse, looking at a digital timer with seconds, and counted my pulse usually for 20 seconds and multiplied it by three (otherwise I lost count, if I tried longer measurement intervals!) so his finger gadget would have been more accurate than me.

    I read somewhere (I think it's in that Dr Bell link) that heart rate at least is best measured in the morning because there's a circadian variation in OI in terms of heart rate but not BP. So best to get checked in the morning or early afternoon if you can (I was tested at 5pm and still met the criteria, though!).
  5. Dr. Yes

    Dr. Yes Shame on You

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    Hi Sasha... I inserted my comments in purple into your text (energy conservation on my part!):

    Okay it's back to :In bed: for me for a while... good luck everyone!

    ETA - Btw, have you seen the Dysautonomia Information Network website? It has a lot of basic info on dysautonomia, esp. POTS:

    http://www.dinet.org/index.htm
  6. OurDayWillCome

    OurDayWillCome

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  7. gracenote

    gracenote All shall be well . . .

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    Sasha (and Dr. Yes), thanks so much for this. You have made this topic very understandable.

    I took my pulse after having been semi-reclined on the couch for a couple of hours, and it was 62 bpm. I then stood for 5 minutes (the thought of standing still for even 10 minutes sounded like torture so maybe could be diagnostic in itself), and my bpm had gone up to 81. That's enough of a trial for me.

    My doctor has been wanting me to try Proamatine and/or Mestinon for over a year. I tried a little bit last year but have kept putting it off. The Proamatine made my scalp feel tingly in an irritating way (although that didn't last very long). Yesterday, I took one 60 mg tablet of Mestinon and this morning I took another (about two hours before this little experiment!). I don't quite know what to think. For some unknown reason I feel very resistant to taking these meds, although I don't necessarily have a hard time with medication. We'll see. There are other variables in play right now so it may take me awhile to figure it all out.
  8. Dr. Yes

    Dr. Yes Shame on You

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    :Retro smile: Hi Gracenote,

    I know what you mean. The web site I linked to above has a "What helps?" page that lists some therapies for POTS, including blurbs on Proamatine (Midodrine) and Mestinon that you may find interesting: http://www.dinet.org/what_helps.htm

    Keep us posted on your experimentation. :Retro wink: Oh, btw, can you check your own blood pressure? I really recommend you get a blood pressure cuff if you are going to try things like Midodrine (or any med for POTS, really). Midodrine can cause high blood pressure as a side effect, at which point you will probably have to reduce the dose (at least). It is still a commonly prescribed drug for OI, though.

    Btw - OurDayWillCome (I hope so), I also found this on the same page:

  9. gracenote

    gracenote All shall be well . . .

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    Thanks doc.

    Here's the quote from the link you posted:
    I'm surprised that the dose my doctor recommended was 60 mg and only once a day. It didn't make sense to me. (I found other places recommending 60 mg twice a day). I like the 30 mg twice daily recommendation and think I'll try that. Unfortunately, I don't have a blood pressure cuff. That sounds like a good idea.
  10. OurDayWillCome

    OurDayWillCome

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    Dr Yes.... thanks for pointing out the issue with BBs in this type. This is my type (primary) and I cannot handle BBs.

    And if anyone is near Vandy and wants to take part in a study, there is one ongoing:

    http://clinicaltrials.gov/ct2/show/NCT00580619
  11. Dr. Yes

    Dr. Yes Shame on You

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    Thanks OurDayWillCome..

    You can also post that study information in the "Active Clinical Studies" section in the "ME/CFS News" forum.
  12. gracenote

    gracenote All shall be well . . .

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    Here is another quote from the site Dr. Yes recommended about Erythropoietin also known as Procrit or Epogen. Procirt is what Dr. Peterson prescribed to Corinne see link and quote at bottom of post.

    http://www.dinet.org/what_helps.htm

    When I was on Interferon for treatment of Hep C, my red blood count kept dropping and so my doctor prescribed Epogen. I loved it. It is one of the few things that has ever made me feel noticeably better right away. However, unless your blood count goes below a certain level, it won't be covered by insurance and it is very expensive. I would gladly pull out my needles and start injecting Epogen again if I could (and I'm not too fond of self-injection). EPO is one of the things they test for in professional bike racing (I think).

    From A Visit to Dr. Peterson: Part IV: Spinal Tap, Costs and On the Road Again by Corinne

    http://forums.aboutmecfs.org/content.php?22-A-Visit-to-Dr-Peterson-Part-IV

  13. kerrilyn

    kerrilyn Senior Member

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    I'm thrilled at the thought of SOMETHING (anything) being treatable. I didn't think my heart rate was ever an issue because I don't have chest pain or palpations so I didn't realize it was actually raising. Standing has always been difficult and I don't get dizzy immediately upon standing. I get lightheaded when I climb stairs, sometimes the symptoms are dramatic and feel like I could faint (which I never understood). I just thought I was deconditioned and likely I am, but I watch shows like The Biggest Loser and I think how come these participants aren't fainting upon exertion? I know I would be.

    I watched Dr. Cheney's 3 hour video presentation a few years ago and I didn't think that pertained to me. But his theory is diastolic dysfunction and when I did the poor man's TTT my diastolic reading was all over the place. I just watched his video and and it's making more sense now. I need to do the home test again because I did shift my weight a bit. My HR didn't get up to 30 pbm before it (and my diastolic bp) started to fall and I had to lay down. I bought a HR monitor today to hopefully get some more info.

    There are so many things that can cause similar symptoms http://www.dinet.org/what_causes_pots.htm. I keep having doctors tell me it's adrenal insuffiency, but I'm not convinced.
  14. kerrilyn

    kerrilyn Senior Member

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    I tried out my new HR monitor. I didn't move my legs at all during this test.

    Resting rate was 60 bpm, immediately upon standing went up to 95 bpm very briefly and then back down to 75. Then gradually it kept climbing. After 10 mins it was back up to 95. Just before 20 mins standing it maxed out at 109 and then it started to fall rapidly and within a minute or two it was down to 66 and I had to lay down because I was going to faint. Even laying down it bounced back up to 95 bpm and then gradually came back down to 65 and I started to feel better.

    My HR doesn't seem to get as high as POTS patients I've read about. And just like with the home BP test it falls rapidly when it's reached it's max point. So, is this a sign of POTS or NMH?
  15. Lesley

    Lesley Senior Member

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    Kerrilyn, POTS is usually defined as an increase in heart rate of 30 bpm within 10 minutes of standing, so I think you've got it. You may also have NMH depending on how much you blood pressure fell. Isn't it amazing that something so dramatic can be going on and you don't even realize it? And if you don't complain about rapid heart rate, dizziness, or lightheadedness, a most doctors will never take the simple step of taking heart rate and bp lying down and standing.
  16. kerrilyn

    kerrilyn Senior Member

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    Lesley, I love my new HR monitor :) Thanks for the link in the other thread too BTW.

    When I did the poor man's TTT my diastolic pressure went up almost 30 points after standing 30 mins but systolic pressure stayed the same. And then it dropped rapidly 20 bpm and I had to lay down. It seems odd that just the one fluctuates. And if I'd only taken my pressure supine and then again after standing 35 mins the diastolic wouldn't have looked like it changed much. But it was the climb and then drop, combined with climbing and then falling HR that made me feel like fainting (I think). Does that sound like NMH?

    This HR test was more accurate for me. I could stand less time before symptoms started and they were more severe. I think because doing the poor man's TTT I was shifting/fumbling with my automatic BP machine.
  17. Lesley

    Lesley Senior Member

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    It doesn't sound like NMH, but I don't think it's normal. Here's what Dr. Bell wrote about different types of abnormalities they found:

    Maybe #3?

    The article is here: http://www.pediatricnetwork.org/medical/CFS/bell-commentary/oi-intro.htm It's 10 years old, but I still think it has a lot of good information.

    Now stop testing yourself and rest!
  18. shrewsbury

    shrewsbury member

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    I just noticed Cort's ad for the CAA webinar on blood flow "Trouble Standing? Trouble Thinking?" - and thought it fit well with this thread.

    I have another doc appointment and don't know if I can make it back in time for this on Thursday, but it looks good. I hope someone will listen and report back.

    Just remember that you have to register for it.

    Going With the Flow -- Blood Flow, That Is
    Thursday, March 18, 2010 12:00 PM - 1:00 PM EDT

    It has long been established that many people with CFS experience symptoms like light-headedness, dizziness, difficulty breathing and sweating associated with upright posture, broadly called orthostatic intolerance.

    Is it possible that these symptoms could be connected to impaired blood flow, ultimately reducing the amount of blood that flows to the brain? That's what researcher Marvin Medow, PhD, and his team at New York Medical College are investigating with their grant from the CFIDS Association of America.

    Dr. Medow is a physiologist and associate director of the Center for Hypotension at New York Medical College, where he works with Julian Stewart, MD, a longtime CFS researcher.

    At this webinar, Dr. Medow will describe his study and the techniques his team uses to measure blood flow and chemical changes that may explain many of the symptoms experienced by CFS patients. You'll learn more about orthostatic intolerance, tilt table testing, transcranial Doppler and microdialysis. Suzanne D. Vernon, PhD, scientific director of the CFIDS Association of America, will moderate the program.

    This program is the third in the CFIDS Association's 2010 webinar series. To learn more about webinars in general, please visit http://www.cfids.org/webinar/what-is-a-webinar.asp. Past Association webinars are described and archived at http://www.cfids.org/webinar/series2010.asp.

    Thu, Mar 18, 2010 12:00 PM - 1:00 PM EDT
  19. spindrift

    spindrift Plays With Voodoo Dollies

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    I take some people can actually stand still for 30 minutes? Wow!!! I felt like fainting after 5 minutes. Walking
    works way better.

    My diastolic BP goes from 72 laying to 137 after standing for 5 minutes. With it jumping up 64 mm Hg I definitely
    qualify for orthostatic diastolic hypertension.
    Also qualify for POTS pulse increase of 39 after 5 minutes.

    This seems to be worse in the mornings and gets a little better during the day.

    Talked to my doctor and he said he would read up on it, because he only knew POTS.

    Deos anyone know if orthostatic diastolic hypERtension is treated in the same way as POTS?
  20. kerrilyn

    kerrilyn Senior Member

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    Some people have delayed OI. I fall into that category. That's why taking my BP and HR sitting and then immediately upon standing (which I did years ago), shows nothing abnormal, only a TTT would.

    I found a video illustration about baroreceptor reflex control and blood pressure regulation. It explains how things are suppose to work - for anyone who learns easier visually. http://highered.mcgraw-hill.com/sit...eceptor_reflex_control_of_blood_pressure.html

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