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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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    Hi, everyone,

    I’m in a bad relapse with many new symptoms after 5 good years, and have got lots of good advice here. The relapse started at the end of September, and was triggered by lots of stress that resulted in my leaving my job and moving back from Ottawa to Toronto (I sent my belongings for friends to unpack Nov 27, and am at my parents as a “bridge” till Dec 27.)


    I’m going to my first cardio appointment on Jan 7, and would appreciate any advice on whether I’m doing things in the right order.


    OI: One new symptom was lightheadedness, and I came across “OI” very early when researching how to deal with a relapse. I checked my blood pressure at the drugstore and a walk-in clinic, and the diastolic number was on the low side. I started drinking lots of water with salt and potassium chloride, raised the head of my bed, and use OTC compression stockings occasionally. That seem to have helped, but I’m still lightheaded when I’m up for any length of time, as well as fatigued.


    I’ve been wanting to do a Dr. Bell lie down/stand up blood pressure test since then, and have a friend who will do it for me on Jan 4. I’ll also be seeing my doctor on Dec. 30. If the results show I have OI, I’ll pursue ways of dealing with it more aggressively. I went off the salt water yesterday as per the test instructions.


    Cardio: I had heart palpitations in October (not increased heart rate but more intense). They seem to have mostly gone away, maybe because I’m not doing outdoor walking anymore. Also a feeling of my heart being “strained” when I was doing outdoor exercise, and chest pains I went to ER for in November that was diagnosed as GERD, with a good ECG and x-ray result. I’ve got a heart monitor watch and don’t seem to have POTS or a high heart rate.


    My doctor detected a heart murmur in Oct and has scheduled me for a cardio appt Jan 7 with a 48-hour Holter test and a transthoracic echo test. I’ve never had any concerns about my heart before (I’m 43) and don’t know anything about cardio tests. BTW, I have no access to a ME specialist.



    Questions:

    Does it make sense to go off the salt loading and do the OI test before I see the cardiologist, and have those tests done with my “normal” blood pressure, even if it means being more affected by symptoms during Christmas and the move to the new appt?


    The OI test instructions make several references to fainting—if I haven’t felt like I was going to faint before, is this likely to happen during the test?


    Any advice re what to do/ask when seeing the cardiologist? Or avoid?


    Thanks!
  2. Kina

    Kina Moderation Team Lead

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    I saw a Cardiologist about 5 years ago I got the distinct impression that tests were more important to this guy than anything I had to say. I had the appointment after an episode of almost losing consciousness in a movie line-up accompanied with chest pain, shortness of breath, profuse sweating etc. Had to go to the ER for that and they set me up with an appointment rather rapidly with a cardiologist.

    He seemed rushed and impatient and really most cardiologists do use diagnostic testing over verbal reports of symptoms anyways. I would stick to just describing your physical symptoms and when they happen and keep it brief because knowing that you live in Ontario, the cardiologist is likely over-worked with too many patients and little time to see them. I am pretty sure you will get the usual battery of tests -- another ECG, stress-test, ultrasound etc so he can make a proper diagnosis.

    I ended up getting a diagnosis of mitral valve prolapse which I think might account for some of my symptoms once in a while but it's a mild form. One of the things that suggest MVP is a murmur (I think). I got diagnosed with MVP from the ultrasound. I am supposed to have follow-up ultrasounds every two years but I haven't had one lately. My bad but then again I didn't have a family doctor until this year. Bad Ontario. I live in Peterborough BTW and there are huge wait lists here for anything unless you are in an emergency situation.

    Good Luck with your appointment and let us know what happens.
    ahimsa likes this.
  3. Singout

    Singout

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    Thanks, Kina! Helpful advice!
  4. ahimsa

    ahimsa Senior Member

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    @Singout,

    One additional piece of advice is that some cardiologists don't know all that much about Orthostatic Intolerance. They may know the basics, of course. But there are so many subtle issues with different types of chronic types of OI (POTS, NMH, etc.) that even experts in the field disagree on the terminology to use and what treatments might help. And OI is unlikely to show up on the basic tests (ECG, echocardiogram, holter monitor) that cardiologists use.

    Some OI links that might be helpful (you may have already seen these):

    http://www.research1st.com/2011/06/19/the-outs-and-ins-of-oi/

    http://emedicine.medscape.com/article/902155-overview#aw2aab6b6

    http://www.cfids.org/about-cfids/orthostatic-intolerance.asp

    My own cardiologist is pretty open-minded and helpful (unlike some cardiologists that folks have described on this forum). But he has also often said that OI and dysautonomia are not his main areas of expertise. So maybe that's why he was willing to do my first tilt table test. This was back in Jan. 1995 when the first research papers from Dr. Rowe at Johns Hopkins had not yet been released.

    One doctor said, "Your blood pressure is just fine!" when I showed him the Hopkins research. And some doctors said that only patients who faint should have the tilt table test done (wrong). My cardiologist did the tilt table test and saw my very abnormal results firsthand. Since then he has been willing to work with me to adjust my medications based on my symptoms instead just looking at test results.

    Best of luck finding a doctor who can help you to diagnose and treat your symptoms! There is so much trial and error in the field of treating OI.
    Last edited: Jan 5, 2014
    WillowJ likes this.
  5. ahimsa

    ahimsa Senior Member

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    Oops, I meant to answer this question but I forgot.

    I'm not sure what will happen for you on the test (everyone is different). But I can share that I have never fainted in my life *except* on the tilt table test. I believe that several other patients have also reported this tilt table test reaction on the forums.

    If you have a good doctor who is an expert in dysautonomia then he or she might be able to read the data collected (blood pressure, heart rate, etc.) and gather enough information for a diagnosis before any faint occurs. In my case it was a combination of it happening *very quickly* (my blood pressure suddenly plummeted to something unmeasureable) and it being done back in 1995 by a cardiologist who was not a specialist in this area.

    On my second tilt table test (done in 2003 for insurance purposes) he was looking for that drop in BP. They put the table flat just as soon as it started to happen so I only partially blacked out that time.

    I hope this is helpful. Let us know how the doctor appointment goes.
  6. taniaaust1

    taniaaust1 Senior Member

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    As Kina said, a heart mumor can go with MVP ... MVP often happens in ME patients.

    You may be confused about POTS as thou you mention the watch, you dont mention doing a standing poor mans test at all and you dont seem to have had a tilt table test either. Its those two things which are needed to find out if you have POTS or not. It good to get another to watch to make sure you arent non thinkingly wiggling your toes or something as a subconcious reaction to standing... Ive heard of some doing that and not realising they were moving when they are meant to be still.

    With POTS, you dont necessarily have to have heart rate very high... it just has to be going up from a stable laying resting rate .. to standing for up to 10-12 mins and have an increase from your resting rate of 30 beats per minute. (this means that if you have a low resting rate eg say 60.. POTS would be your heart rate jumping up to 90 or over on standing.. the body is supposed to be able to adjust things so there isnt large jumps in things on postural change).
  7. Singout

    Singout

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    Hi, @ahimsa and @taniaaust1
    Thanks, that's really helpful. I did the poor man's test with a friend yesterday and would love your feedback.

    When I was lying down the three measurements were very similar, averaging 105/57 and 61 bpm
    Then I stood up and got 94/67 and 71 bpm; 5 minutes later 94/67 and 79 bpm.

    These numbers are "normal" according to David Bell, BUT my legs felt heavy right away, at 4 minutes I had bad pins and needles in my calves and visibly blue feet (normally pale white) and we had to stop at 8 minutes because I felt like I was going to fall over (no numbers for that exact moment). Test instructions say to do 30 minutes if the patient can go that long. I don't think starting to faint at 8 minutes is normal--do you?

    I'll also ask the cardio on Tues and maybe see if my doc will refer me to a specialist. I really don't want to be strapped to a tilting table when I'm trying to get lots of rest, but maybe that's necessary.

    I guess I don't think I have POTS b/c my heart rate always seemed to be under 90 even if I'd been on my feet for a while--dishes, shower, etc. But I never tried standing completely still.
  8. Sea

    Sea Senior Member

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    Your results don't indicate POTS but I wouldn't say they are completely normal either.

    In a completely normal reaction to standing up and standing still changes to blood pressure are minimal and stabilise quickly. (Within seconds to a minute)

    While your blood pressure changes are minimal and move in a normal direction (Systolic down slightly, Diastolic up slightly) they don't stabilise back to normal at all. The effect of this is that your pulse pressure (systolic minus diastolic) is a little narrow and blood remains pooled in your legs. In this instance it would be expected that your heart rate should rise to compensate but it doesn't.

    http://www.fpnotebook.com/cv/exam/plsprsr.htm
  9. Singout

    Singout

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    Thanks, that's helpful. the first standing number for diastolic was actually 57, not 67. I'm wondering if its normal to almost faint after standing for eight minutes..
  10. Sea

    Sea Senior Member

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    No, it's not normal at all - though it is normal for many of us. You won't find me standing still anywhere! Normal people can stand still for an extraordinarily long time with no ill effect.
    NK17, WillowJ and ahimsa like this.
  11. ahimsa

    ahimsa Senior Member

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    No, that's not normal. Having pre-syncope (pre-fainting) symptoms while standing still sounds a lot like some kind of Orthostatic Intolerance. But it may be some kind of OI other than POTS.

    Also, the at-home test -- trying to stand still while you measure heart rate and blood pressure -- is not nearly as likely to be diagnostic as a tilt table test. I doubt that at-home test would have shown any problems for me back when I was first diagnosed.

    On a slight tangent I should mention that many doctors are ignorant about OI. I had appointments with two different specialists, a gastroenterologist and a sleep specialist. When I went through my medical history and mentioned my diagnosis of OI (I actually mentioned a more specific diagnosis, NMH, Neurally Mediated Hypotension) neither of them knew what it was. Both of them said something like, "What's that?" when I mentioned OI and NMH.

    Even that would have been okay -- doctors can't know everything -- except for the fact that neither of them seemed interested in learning even the basics facts about OI. When I gave them a copy of the Johns Hopkins patient handout on Orthostatic Intolerance (PDF version is here - http://www.cfids.org/webinar/cfsinfo2010.pdf ) they just handed it back to me unread. One of them at least glanced at the paper before handing it back. The other didn't even do that.

    So, I just wanted to let you know that, for some reason, many doctors don't know [and don't care!] about OI. I have no idea why. It's not like it's some fringe area with no medical tests and no way to get objective evidence of the problem. I understand that there are different opinions on diagnosis, treatment, and even terminology, but that doesn't mean doctors should simply ignore it if it is not their own specialty.

    Maybe some doctors simply think it's only a minor nuisance and not a serious, disabling problem for at least a certain subset of patients? That could explain the dismissive attitude. But who knows?
    NK17 likes this.
  12. Singout

    Singout

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    Thanks, @ahimsa! it seems like different terms are used, but what I read seems to use OI for BP changes and POTS for HR.
    Thankfully my doc's limited ME experience includes someone w OI. And there are no ME specialists anywhere near Toronto, but there do seem to be dysautonomia ones.
    Good to have a confirmation that I'm not normal :)
  13. Singout

    Singout

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    And yes, docs who aren't open to more knowledge are immensely frustrating!
  14. Sea

    Sea Senior Member

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    OI is an umbrella term. POTS, NMH etc are types of OI
    NK17 and taniaaust1 like this.
  15. ahimsa

    ahimsa Senior Member

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    @Singout,

    I learned OI (Orthostatic Intolerance) as an umbrella term just as @Sea described it above, a broader category that includes both NMH (aka NCS and other names) and POTS. And I believe that a patient can have problems with dropping blood pressure (BP), or increased heart rate (HR), or *both*. Not to mention that some folks may have BP swings where the BP also goes up as well as going down.

    I've also sometimes heard the term COI, Chronic Orthostatic Intolerance <-- click on that link and then scroll to the bottom for a description. It's one of the descriptions that fits me well since it includes not just dizziness and heart rate increases but also nausea, heat intolerance, sleep problems, exercise intolerance, etc.

    How did your doctor visit go? Was it yesterday?

    Edit- I found this short definition of Orthostatic intolerance that I thought was useful:
    Last edited: Jan 8, 2014
    NK17 likes this.
  16. Singout

    Singout

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    Thanks for the clarification @ahimsa and @Sea! It actually wasn't a visit with a cardio after all, but just with technicians--an echo test there and a 48 hr Holter test. So we'll see...I've requested an appt with the doc who I think specializes in this.

    One last ;) question: there are lots of treatments for this, ranging from cheap and simple to complex. Like everyone, I want to do whatever's necessary without overkill. I'm fortunate to no longer be lightheaded whenever I stand up (what got me looking into this initially). But I'm sure it's contributing to the overall life-destroying fatigue.

    So is there a way to know when I'm doing what's necessary? An ideal BP/HR if I get a monitor? Seeing if it takes longer for my feet to turn blue every few weeks? Just a general sense of feeling better (hard to measure!)?
  17. lnester7

    lnester7 Seven

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    Please read my last blog entry!!! My life has changed. I cannot believe this OI is sooo overlooked. I have my life back.

    I think the difference with OI crash Vs CFS crash is that when I crash of CFS, no matter how much I rest it takes a while to recover and that is more sick feeling (as if I have a mono or flue without the fluish symptoms) but OI I feel better if I keep horizontal. I guess with OI is the inability to be upright.

    I am on florinef and midodrine. THey started me in a VERY low dose and I just increased 3 times over the initial dose. Now I am mostly normal. THe only thing left I cannot do is excercise becaue it gives me muscle pain. But I am still on 1/3 recommended dose so I might keep going on.
    WillowJ and ahimsa like this.
  18. Singout

    Singout

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    Wow, thanks, that's good to know! I found your earlier advice helpful in another thread and I'll read the blog.
    I often have daily phases w flu / fever symptoms that were there pre relapse, but also often feel fine when horizontal so I'm seriously pursuing this.
    Sea likes this.
  19. Singout

    Singout

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  20. Sea

    Sea Senior Member

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    All the best Singout, let us know how you go

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