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Advice for first cardio visit and home OI test?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Singout, Dec 22, 2013.

  1. Singout

    Singout

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    Well, the results are almost "normal" except one thing the cardiologist (who apparently co-developed the HUT) didn't understand, so he's sending me to a blood pressure specialist.

    He had me do the Vasalva manoeuvre while lying down, and said it was perfect (he explained the significance but I forget now--I was a bit spacey and not holding my notebook.

    The results of the tilt itself were that the heart rate was normal, so I don't have POTS (I didn't think I did). The BP rate was a band of a squiggly line (I think the sys and dias alternating?) that was consistently the same width, and with the range often within normal. What he couldn't explain was that the whole band dipped and rose several times. He said this is indicative of falling asleep (not fainting) and had asked me at one point if I was OK, and at another point to open my eyes.

    Any wisdom on what that might indicate?

    He also said that I perhaps should be out of bed more (I'm often lying down b/c I feel better than sitting/standing, but then don't feel tired when lying down. He said the link between CFS and dysautonomia presented by Johns Hopkins, etc. could stem from deconditioning (I didn't bring the JH info, he was already familiar with it). I wish I'd said my lightheadedness started with my crash, when I was the fittest I've been in my life. I also wish I'd asked him to explain why I did so badly on the home test.

    Thanks for listening and any further insights!
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  2. ahimsa

    ahimsa Senior Member

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    This kind of thinking by doctors always annoys me.

    Like you, I was very fit when I first got sick. I was hiking, lifting weights, etc. I could do 45 minutes at level 8 or 9 on the Stairmaster machine (hey, it was 1990 - are those machines still around in gyms?)

    Unlike you, I didn't get a tilt table test for another 5 years. So I guess the cardiologist who did my test could have thought "deconditioning" was the cause of my problems. Fortunately, he did not.

    Another fortunate thing for me was that my tilt table test was definitive. My symptoms started about 4-5 minutes in. Then after about 20 minutes my BP plummeted and I passed out.

    I'm sorry that your test was not very conclusive and you have to see another specialist. I don't know enough to understand why the BP fluctuations were there or what they mean. But from what you have said it does not sound like deconditioning.

    I do know that I was not deconditioned when I first got sick and starting getting lots of pre-syncope (pre-fainting) symptoms. Sadly, I did not recognize any of my symptoms (nausea, dizziness, cold sweat, etc.) as pre-syncope symptoms because I never fainted. They came on slowly enough for me to sit down. Somtimes I would sit down right on the floor but I would always be able to sit down. I never fainted until I took the tilt table test and was forced to stand up through those symptoms.

    There have been many doctors who believe in the link between dysautonomia (of various kinds, and sometimes under different labels and categories) and ME/CFS, not just Dr. Rowe at Johns Hopkins. I think Dr. Julia Newton is doing research on this, for example. There are other names that I can't remember now.

    I have no idea why doctors get stuck on the deconditioning theory when there are so many patients with the same story. They are very fit and active, then suddenly -- *BOOM* -- they develop ME/CFS symptoms. Many ME/CFS patients have had symptoms of POTS [ or NMH, or some kind of orthostatic intolerance (OI) ] from the very first day of the illness.

    Dizziness and lightheadedness were my very first symptoms! My first wrong diagnosis was "inner ear infection." Sigh. :rolleyes:
    Last edited: Feb 22, 2014
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  3. taniaaust1

    taniaaust1 Senior Member

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    I dont understand what he would of meant by that.. the BP I assume drops a little when someone goes to sleep but it drops too when one is getting faint so Im confused by his comment. I thought its normal for there to at times be a very slight swing when someones BP is adjusting to standing (just not too much) and you said he said it was all within range.

    Doctors often just love to say that. Yes it is true that deconditioning can cause things like POTS/dysautonomia.. astronaunts get this issue.. but for many of us who have ME we know the cause isnt that. I still had severe POTS back when I was able to exercise for 2hrs per day, exercise didnt help my POTS at all. (with my ME my stamina to aerobic exercise, didnt improve either even after months of 2hrs per day exercise.. I still couldnt sprint for over 50-55 seconds). For some of us exercise helps nothing at all and can cause us to get much worst.

    I didnt see a problem with your home test result only with your symptoms (but then you didnt do it for very long)
    ..........

    I guess you may end up just being able to say that you have OI but dont know why. Your OI issue may make itself clearer at a later date. Things with this illness change.
  4. WillowJ

    WillowJ Senior Member

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    that's fascinating. I'm sorry he wasn't more helpful.

    Could you ask about narcolepsy?
  5. Singout

    Singout

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    Thanks for your support, everyone! I'm better prepared for Dr. Blood Pressure, with specific questions I want him to answer. As this goes on I'm getting the strategic hang of it. ;)And I'm open to the idea that my mild lightheadedness and fatigue isn't caused by OI, if that can be proven by someone who knows the illness and can explain the band dips and my standing still symptoms.

    The next option, I think, is to go to a dysautonomia clinic in the next city over, which would have been an easy public transit trip pre-crash, but still close enough (30 minutes or so) that I could find a friend to take me.
    @WillowJ : I think narcolepsy would also have manifested itself while I was lying down also? That BP was level.
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  6. Singout

    Singout

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    So I saw the blood pressure doctor, who was very sympathetic. He gave me a "diagnosis" (wouldn't use that word for reasons I forget) of orthostatic hypotension. He put me on 0.2 mg/day (in 2 doses) of Florinef and prescription waist-high stockings ($200!). Brand is Bauerfeind, I think the doctor put the lightest compression on the prescription. (I can't see a compression I understand on the box.) Much to my disappointment, neither have helped--I'm still lightheaded after about 45 minutes sitting or standing, and spending most of my day lying down.

    He told me to increase my salt--I went from Dr Cheney's Homebrew of 1/8 t salt and 1/8 t NoSalt per cup of water (3-4 litres/day) to all salt, as well as 1 t. of salt in my daily chicken soup. He also told me to move my legs/feet before getting up, and when sitting. The next step is Midodrine, which he's cautious about because it's an orphan drug and not always available (maybe that's a Canada thing?)

    I got some of the ElectroMix people here recommend--I like it but it has no sodium, so I havent' been taking it. I haven't quite got my head around the electrolytes thing.

    I've also read the posts here on abdominal binders and g-suits--interested in what @Sushi said about the test that showed abdominal pooling. (I did have swollen feet and calves in September just before I crashed.) I'll look into those as well.

    Seeing the doctor again next Tuesday--I've done a blood test for random glucose, TSH, creatinine, and potassium, and a urine test for volume (3L!) sodium, creatinine, potassium, protein. Ordered a BP monitor but it got lost in the mail. Sigh.

    Wondering, among other things, if people who use the stockings wash them after every use as per the instructions (??!!) and about blood volume--@SOC suggested last fall that I try fluid loading before bed and early a.m. Haven't figured out yet how to do the night one without waking up (I quit drinking everything at 6:00).

    As always, any experience or advice would be valued!
    Last edited: Apr 25, 2014
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  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Singout

    I have used compression tights (need to be 25 "what's it" or more to help) but now use compression knee socks as needed--I need them less and less these days. Earlier I used abdominal binders (they must be tighter than anything you can just pull over your hips--think Scarlett O'Hara!)--both helped.

    I use electro mix plus celtic sea salt--a good, full mineral natural salt is best.

    It was a "bells and whistles" Tilt Table Test done by an autonomic specialist that showed abdominal (spanchic) pooling.

    I've taken midodrine too. It is a bit of a tricky drug that some do well with--but I didn't! Two weeks in I had a sudden, very scary episode that, looking back, I think was an extreme spike on BP. I was taking a low dose. I stopped!

    Strattera took away all my OI symptoms though and I used it until I didn't need it anymore.

    Best,
    Sushi
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  8. Singout

    Singout

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    Thanks so much, @Sushi! I'll look into the Strattera as a backup if the midodrine doesn't work. So good to hear what works for others! And work on getting a BP monitor and binders from someone who can deliver. Scarlett O'Hara is a useful image ;).
    You said in the fall you were moving--how did it go?
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Moving was hard--it always is! But I did it and am now in a much better situation. Still "settling" though with all the things that need to be done in a new house. Also, putting in a garden, well mostly hiring big strong men to follow my instructions for putting in a garden! :)

    Sushi

    P.S. Strattera seems to work for a subsection, but worth a try. Don't even think of the recommended dose. I took 10 mg twice a day and it took a month to "ease up" to that dose. Started with 1/3rd cap every other day.

    Best,
    Sushi
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  10. Valentijn

    Valentijn Activity Level: 3

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    10mg was my maximum too, though I did best with taking it three times per day. Now I take 2mg Yohimbine (approximately 100mg Yohimbe) twice per day instead ... available over the counter in some areas.
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  11. ahimsa

    ahimsa Senior Member

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    @Singout, I see you've already gotten good advice from several folks.

    I'll just add a quick note that many patients on here have had more success when they start with small doses of Florinef and work up slowly. Start with 1/4 or 1/2 tablet, once per day, for a few days (or perhaps even a week) and see how you react to it. Then slowly increase the dosage. I think it's less likely to cause reactions (e.g., a bad headache) when your body has time to adjust.

    Also, for the electrolyte mix, one cheap and easy solution is to mix your own at home. All you need is some plain salt (sodium chloride, not iodized) and salt substitute (potassium chloride, available at any store or online). Mix some of each into a liter of water (pitcher or water bottle) and then use this as part of your daily fluid intake. That's generally at least 2-3 liters per day and some folks drink even more than that.

    Different people use different recipes. I add approx. 3/8 tsp. salt, 1/4 tsp. potassium chloride and also 1/2 tsp. baking soda (sodium bicarbonate) per liter of water. This makes it close to the WHO levels for ORS (oral rehydration solution) recipes. I read somewhere that baking soda helps but I can't remember why. (acid/alkaline issues? :confused: )

    You can get even more complicated recipes but this is a start.

    Note - this is just my own personal experience in case it helps. Everyone is different -- do what works best for you!

    :hug: Hugs :hug: and best of luck.

    PS. Can't help on the compression clothing. I never did find anything that worked well. I also get splanchnic pooling, esp. after eating.
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  12. Singout

    Singout

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    Thanks, @ahimsa! I'll try adding the baking soda.
    I did introduce the Florinef by half a pill every few days. I've been on the full dose for 3 Weeks. It gives me a buzzing in my head that sometimes turns into a headache. I could live with that if it helped, but it doesn't. Maybe the next thing...
  13. Singout

    Singout

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    And now I've had two more rounds with the blood pressure doctor. Tuesday he said my BP and HR in the office were fine, as were my test results, except my sodium was too high (been consuming a lot of salt!) I pushed for a 24-hour test, and that came back OK too.

    So he's not going to try me on midodrine or anything else, even though I still feel lightheaded/tired after about an hour up (although I do think things are slowly improving). However, it's disappointing not to have this be as big a "fix" as I thought it would be.

    The test results are an average of 138/68 during the day, and 64 HR. A bit lower at night. I looked for HR increases (none) and BP drops--no significant systolic ones, and the diastolic ones all seem to be when I go from active to resting.

    Next steps:
    • I've just ordered my own BP monitor, and an abdominal binder. (The g-suits look interesting, but are a headache to get into Canada.)
    • Research if one can have "normal" BP and still have OI??
    • I've dropped my daily magnesium on the doc's advice.
    • Going to look into more active gentle exercise--right now I'm only doing very relaxed yoga postures. (Struggling with the CFS/ME mantra of listening to my body/resting vs the OI one of too much rest being harmful.)
    • Also going to look into what was said earlier in this forum about the gap between systolic and diastolic BP and blood volume--maybe try drinking more at night even if it gets me up. But then I can't go back to sleep...
    • Try the at-home test again at some point and see if those symptoms are as bad as they were the first time.
    • And maybe try increasing the Florinef a bit--although 0.2/day seems like a lot already.
    • Look into the dysautonomia specialists some distance away--although I'd have to find out if they could/would do anything that hasn't been done already, or do it better, so I can sell my GP on giving me another referral.

    Another test and visit in June/July. Thanks again for all the support and advice!
  14. ahimsa

    ahimsa Senior Member

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    @Singout, sorry that you still have not gotten any useful info that would lead to treatment. Wish I could suggest something else.

    Best of luck to you.
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  15. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Some people find that potassium chloride causes digestive system pain. You can buy powdered potassium gluconate and possibly potassium citrate.
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  16. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    @Valentijn I was googling Yohimbe and it's for ED! I'm guessing it helps with blood pressure in some way.

    I'm always horizontal the last 6 or so years because It's less exhausting . I don't get light headed when I stand at all. My BP is always fine.

    No doc had ever cared enough to try to figure this out so maybe I can on my own.
  17. SDSue

    SDSue Florida

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    Sushi,
    After my recent doc visit, I'm doubling down on my compression and electrolytes. Could you please weigh in on your experiences with ab binders vs compression tights vs compression stockings?

    I seem to feel better with knee to chest Spanx than with an ab binder. I tried 30 mmHg footless tights, but didn't appreciate any difference.

    First off, I practically use an entire day's energy just wrangling myself into the tights or Spanx. Secondly, the Spanx constantly roll down. Third, the ab binder makes me feel like I can't breathe when I'm sitting.

    Suggestions? Thanks.
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think it is trial and error. My doctor could tell where the worst pooling was from my TTT. So an abdominal binder helped me, but it shouldn't be so tight that you can't breathe. :aghhh: The kind I had was quite comfortable--either a zipper or hooks and eyes.

    Compression tights drove me nuts--struggling in and out of them was a workout in itself. I did best with an abdominal binder and compression knee socks. The socks are easy to put on and these days I am not using the binder.

    My doc also told me to drink about 750 ml of electrolytes before even getting up, so that when you started standing and walking for the day, you were tanked up.

    Sushi
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  19. Singout

    Singout

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    @Sushi,
    So good to hear you don't need the binder--do you think any one thing helped you get past the bad stage? Meds? Time? My blood pressure doc (who doesn't specialize in OI per se) said in 50 years he's only seen one person recover from this.
  20. SDSue

    SDSue Florida

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    I'm hanging on to hope that when the underlying cause is eliminated, even the POTS will vanish. Seems I've read of several people on forums who've had that very experience? What say you, @Sushi ?

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