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What is this called?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by paul80, Mar 6, 2016.

  1. paul80

    paul80 Senior Member

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    For the past couple of months I have worsened to the point I start feeling really bad just from sitting up a short time. I feel like blood is draining from my head and I get a lot of different symptoms. I start feeling weak like i need to lie down, sharp pains in head, weird feeling in my eyes, dizziness, sweating, nausea. Probably more I can't remember. It gets worse the longer I sit up and I feel better lying down.

    Is this Nmh?

    Also I want to know if this is worth going for tests for. I don't to make my self much worse unless there's a good chance of getting something that will help, like drugs. So please let me know if you have had similar symptoms and have tried treatments. And whether they worked or not.
     
  2. Old Bones

    Old Bones Senior Member

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    @paul80 I'm assuming your reference to "Nmh" above relates to neurally mediated hypotension. Have you tried checking your blood pressure, comparing the readings between lying down and sitting up? This may be a good place to start. I was diagnosed with neurally mediated hypotension several years ago, but was never treated for it. These days, I still have autonomic problems, but they are different -- POTS and extremely variable blood pressure, but not particularly low most of the time.
     
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  3. paul80

    paul80 Senior Member

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    Hi yes that's what i meant. Do you think that's what it sounds like?

    I haven't tried taking blood pressure, I didn't know you could do it at home. Is there something I can buy for that?

    Also, why did you not get treated for nmh, was there nothing they could try?
     
  4. anciendaze

    anciendaze Senior Member

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    Also need to check for serious drop in pulse pressure (systolic - diastolic) for some minutes after standing, delayed NMH. I've just posted a link to this review paper for doctors. The device I use is an OMRON BP760N.

    Next problem: you will encounter doctors who insist "that's not how I was taught to take blood pressure". Generally, low pulse pressure after some minutes of standing is ignored if it does not lead to syncope. If it does the condition is called NMS, neurally-mediated syncope. You will also find doctors who feel neurally-mediated is a code word for psychosomatic. Not sure their condition is treatable.
     
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  5. PatJ

    PatJ far and free I gaze

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    Some more information on Orthostatic Intolerance:
    National Organization for Rare Disorders
    Preventing and treating orthostatic hypotension: As easy as A, B, C - don't be misled by the word 'easy'. Treating OI successfully is often very difficult.

    If you want to check your BP then look for an automatic home blood pressure monitor. Omron is a good brand. You don't need anything fancy, just something that will be reasonably accurate and will record the readings for you. Expect to pay roughly $50 US.

    Then try the Poor man's tilt table test. Record your readings (most home BP monitors will do this automatically.) Post your results here for basic feedback (include systolic, diastolic, and pulse for each reading), but you'll need to take the readings to a doctor (preferably an autonomic specialist) for a medical diagnosis.
     
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  6. Old Bones

    Old Bones Senior Member

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    The weakness, dizziness and nausea you mentioned are all symptoms associated with what I've known as neurally mediated hypotension. It seems based on the article at the following link that this name is outdated, and that the condition is now called neurally mediated syncope.

    http://www.dysautonomiainternational.org/page.php?ID=31

    Here's another good article:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC101078/

    I recently purchased a new blood pressure monitor for at-home use. I chose one that allows me to download the statistics to our computer. The accompanying software program provides various graphs that can be printed out for review by a physician.
    http://www.biosbrands.com/products_bp_fever/3MS1-4K.html

    Another highly-rated choice is the Omron. We eliminated this from our purchase decision because of security/privacy concerns using the "App" to record and graph the blood pressure statistics. We couldn't agree to Omron's conditions in order to use their App.
    http://www.omronhealthcare.ca/produ...-pressure-monitor-plus-bluetooth-smart-bp786/

    I wasn't treated for my condition due to extreme sensitivity to medications. And, despite feeling ill and weak (like I was ready to collapse), I never did. I think my physician deemed the risks associated with treatment (except for lifestyle modification) more serious than the possible benefits.
     
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  7. paul80

    paul80 Senior Member

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    Thanks for the info. I think i have adrenal fatigue and i've read that can affect your blood volume. Also just the lack of sleep i'm getting might be affecting it. Waiting on the test for adrenals now.

    I'll definitely try the "Poor man's tilt table test". just need to get the bp monitor. Thanks for that.
     
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  8. taniaaust1

    taniaaust1 Senior Member

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    I agree with what the others have said an you probably have got low blood volume with it.

    Other autonomic issues which go with ME/CFS other then NHM could be the issue... it could also be postural orthostatic tachycardia syndrome (POTS) which is tested also by a BP monitor but instead of looking at BP, instead its based on amount of heart rate change from a stable laying reading to then standing for up to 10 mins

    (you could test yourself with a poor man's standing test or have this problem picked up with a tilt table test.. though make sure those testing do understand POTS so know what to look out for). I get those very symptoms you mentioned due to the POTS. You could experience yourself going suddenly blind and passing out.

    I too have a Omron monitor and highly recommend that brand, I tried 3 other brands before that which couldnt cope with my bad autonomic system changes and so would just fault out on me, even my grandmothers monitor she always uses wouldnt work on me and would error out when Im standing.
     
  9. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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  10. ahimsa

    ahimsa Senior Member

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    NMH/NMS can be difficult to diagnose correctly without a Tilt Table Test. If you try to take measurements while doing a test at home, or even in the doctor's office, you may have difficulty standing still enough to get readings accurate enough to show any problem. Finding a problem with POTS is a bit easier to do with a simple standing test at home or in the office. But with NMH there may be symptoms after only a few minutes but the large drop in BP might be delayed by 20-30 minutes.

    Although the preferred name may be NMS now I like the old name, Neurally Mediated Hypotension, better. The word syncope means faint. I don't ever faint "in real ilfe" - only on the Tilt Table Test.

    When I use the NMS name for my diagnosis then doctors often assume it means that fainting is the primary problem. They may think that as long as I'm not fainting then symptoms are under control and there's no problem (NOT!). One can have a lot of dizziness, brain fog, nausea, shortness of breath, etc. without ever getting bad enough to faint. Folks with a diagnosis of ME or CFS who also have some form of Orthostatic Intolerance often do not faint until stressed enough by the Tilt Table Test (and a good doctor can read the data while testing and get a diagnosis without having to make the patient faint).

    For more information (in addition to the good links already posted) here's the Johns Hopkins patient handout on Orthostatic Intolerance:

    http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf
     
    Last edited: Mar 7, 2016
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  11. ahimsa

    ahimsa Senior Member

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    For me it was quite helpful to have a diagnosis of NMH. With Orthostatic Intolerance there may be no "magic bullet" that cures everything but there are several treatments you can try. My treatments have improved things a lot for me.

    Here's one link listing different POTS treatments (many of these are also used for patients who have NMH/NMS):

    http://dinet.org/index.php/information-resources/pots-place/pots-what-helps

    And even if none of the treatments had worked for me it was still quite useful to know which things were likely to trigger symptoms for me (e.g., heat, standing for more than a few minutes, sitting upright any length of time). I also learned about other things that help like drinking electrolyte solutions, resting with my feet elevated, compression garments, and so on.

    In short, the NMH diagnosis made a big difference for me.
     
    Last edited: Mar 7, 2016
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  12. paul80

    paul80 Senior Member

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    Finally tried to do the poor mans TTT. I only lasted about 12 minutes before i just felt too bad to continue. This was done on a considerably good day which is quite rare.
    Also my heart rate at rest is usually about 70-75, maybe i was a bit nervous.

    Lying down
    0 minutes BPM:84 BP:119/74
    5 minutes BPM:84 BP:120/74
    10 minutes BPM:87 BP:110/74

    Standing
    0 minutes BPM:110 BP:120/82
    3 minutes BPM:129 BP:111/87
    6 minutes BPM:129 BP:107/86
    9 minutes BPM:126 BP:76/55
    12 minutes BPM:128 BP:104/90


    I tried to stay still but towards the end my partner said i started fidgeting around so could that be why the blood pressure came back up?

    I was using Omron blood pressure monitor but i also had one of those finger BPM readers and that was showing heart rate at 135-140 at some points during standing. so i'm not sure which was correct.

    I noticed when i was standing my shins, ankles and feet became very itchy. i got very nauseus and lower back was quite sore. Also got other symptoms like feeling weak, sharp pains in head and blood draining down.
     
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  13. Valentijn

    Valentijn Senior Member

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    Your pulse pressure (difference between systolic and diastolic) is getting very narrow, starting at the 3 minute mark. That means that not much blood is getting pumped with every heart beat, probably causing heart rate to rise as an attempt to compensate.

    Your pulse pressure values above come out as 38, 24, 21, 21, and 14. Normal is around 40, with under 25 being considered a medical emergency when it happens due to sudden blood loss. Though on a chronic basis, it just seems to make us feel like crap and unable to function if standing or sitting up for too long.
     
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  14. paul80

    paul80 Senior Member

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    I didn't even notice that, never knew about pulse pressure, thanks. So what does the narrowing of pulse pressure mean in terms of diagnosis? The bpm values mean i have POTS right?

    I was reading on the POTS uk website but i never read anything about pulse pressure. Is it not normal in POTS for that narrowing to happen?
     
  15. Valentijn

    Valentijn Senior Member

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    The BPM means you have tachycardia ... but it's probably the result of the narrow pulse pressure, so calling it POTS isn't helpful. I think orthostatic intolerance from narrow pulse pressure typically comes under Neurally Mediated Hypotension (NMH) or similar.
     
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  16. Hutan

    Hutan Senior Member

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    Well, I think you could call it POTS. Your bpm when lying down was 87 and within three minutes of standing it was 129. That's a big enough increase to qualify.

    Clearly you have orthostatic intolerance; your heart rate and blood pressure in response to standing is messed up and you have significant symptoms. I wouldn't get too hung up on defining it more than that. The various issues will probably come and go with time of day and other factors. Probably there will be times when your pulse pressure doesn't narrow so much. Probably there will even be times when your bpm doesn't increase on standing enough to qualify for POTS. It doesn't mean you have suddenly got a different diagnosis.

    If you are getting similar results and symptoms very often, then you should seek help. Many here have reported that medication has helped.

    I have been prescribed Florinef. That didn't work for me and I didn't feel good while I was taking it. I gave up on that specialist as he kept pushing GET as a treatment - so I haven't tried other medications. But there are a few different ones.
     
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  17. paul80

    paul80 Senior Member

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    So i guess it's a cardiologist i want to get a referral for. My doctor seems clueless so since i meet the diagnostic criteria for pots on the NHS website i'll just argue that case and hopefully she will give me a referall.

    I noticed on the POTS UK website it has a list of experts they reccomend and one of them is in my local hopital so i'm really hoping to see him.

    Hutan i don't think my results would get any better than this, i think my results will usually be worse because i felt particulary good on the day i done this test.

    Valentijn, from what you say, logic tells me beta blockers would be a bad idea as they reduce heart rate and my body may need the increased heart rate. would you agree? florinef of miodrine might work though hopefully.
     
  18. ryan31337

    ryan31337 Senior Member

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    It sounds like you're on the right track. I've seen three cardiologists, the first two were random referrals, both had no real appreciation or understanding of POTS/NMH dysautonomia despite one being the most senior NHS cardiology consultant in the area and the other being a lecturer...fairly typical it seems. The third was an electrophysiologist and POTS expert that I sought out because he was listed on a POTS charity site, totally different & much more positive experience.

    My experience on beta blockers has been a mixed bag. Aside from the typical orthostatic intolerance symptoms you mentioned they did greatly reduce my migraine frequency/severity and very high blood pressure spikes, I think they may have also helped my gut issues. On the other hand the side effects weren't much fun with drowsiness, exertional dyspnea, chest pain & nightmares/insomnia. Thankfully these have mostly subsided now after a few months and I feel the positives outweighed the negatives regardless.

    I didn't see a big improvement in the typical orthostatic intolerance symptoms until I started drinking an awful lot of electrolyte loaded water alongside the beta blockers.
     
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  19. Valentijn

    Valentijn Senior Member

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    Yes, anything which slows heart rate would probably be a very bad idea. That's why calling it "POTS" really doesn't help, when there's an indication that the tachycardia is reactive to low blood pressure and/or low pulse pressure. But hopefully a specialist will administer a proper tilt table test and know what pulse pressure is :p

    No idea regarding those drugs. But a lot of ME patients seem to report problems with the standard OI meds.
     
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  20. taniaaust1

    taniaaust1 Senior Member

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    Hi, you have POTS (increase of over 30 beats per minute on standing), you also have NMH (POTS and NMH commonly happen together though both of these can also happen alone).

    the following thou old and somethings have been better defined since that time eg POTS is now recognised as being increase of 30, the following is a good article by Dr David Bell (well known ME specialise who actually studied a little I believe under what a dr who is known as the grandfather of autonomic disorders) of the types of dysautonomias which occur in ME (I get all 5) http://www.oiresource.com/tresults.htm

    some POTs patients do take beta blockers for it, the most common med for POTS thou is Florinef .

    There can be a flush in the legs which happens in this disorder due to blood pooling there, that can make one itchy there.

    A heart specialist may be the wrong specialist to go to for POTS, many arent actually aware of POTS as POTS patients have healthy hearts, POTS is rather an autonomic system disorder. Dont seek out a heart specialist, try instead to seek out a specialist of whatever field, but who also has a special interest in POTS.
     
    Last edited: May 25, 2016
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