Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Is it worthwhile getting a blood pressure monitor??

Discussion in 'General Treatment' started by Tulip, Jul 22, 2011.

  1. Tulip

    Tulip Guest

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    I was eyeing one off in the chemist yesterday and wondered if it would be worthwhile. I would love to know how low my bp goes when I hit the deck, which is quite regularly lately. And I am dreading summer because my bp barely lets me function.

    Has anyone got one?.
     
  2. TinyT

    TinyT Senior Member

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    I've got one Tulip, my GP suggested it for keeping an eye on my BP with my POTS and how it changes. Especially when I was complaining of sharp headache type pains & increased brain fog. It was also suggested as evidence to take to a specialist/cardio. Doctors often suggest it to people with hypertension for keeping an eye on their BP, so why not those of us with low BP or extreme postural changes.

    Its also handy to keep an eye on how well I'm going through the day with staying hydrated & getting enough salt (I drink 2-3 glasses of home rehydration/electrolyte mix). If my BP isn't high enough by nighttime, I know I haven't managed to drink enough, or alternatively have taken too much betablocker.

    Its good for keeping an eye on how your body responds to meds which may increase or decrease your blood pressure (e.g. betablockers, midodrine or florinef).

    I was actually able to get a rebate from my private health insurance with a letter from my doc. She told me that the Omron ones were really good and to get an arm cuff unit (not a wrist one, they are a bit more unreliable).
     
  3. Tulip

    Tulip Guest

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    That's true TinyT - I have seen the Omron one's around so I will check them out!.

    Thanks :Retro smile:
     
  4. Valentijn

    Valentijn Senior Member

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    It really depends on what your goal is. The BP monitor just objectively confirms that yes, you really are feeling crappy :) If you aren't sure if you have NMH, the BP monitor will indicate NMH by ceasing to function after you stand up for a while because your pulse pressure is too low for it to detect.

    I find a heart rate monitor to be more useful, since I can use that to find out what my limits are to avoid feeling crappy in the near future. I use the 60% of max guideline, and a day of using it showed me that 1) I should take a break halfway up a single flight of stairs, 2) my heart beat gets very irregular when leaning forward, and 3) I need to get up verrrrry slowly after sleeping because I have a HUGE heart rate spike. Other things I'll test for after vacation are how slowly I should be walking, and how often and how long I should take breaks.
     
  5. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Everyone should have one. With POTS you need it for sure, but they are great to have for everyone. Having a good heart rate watch is good too, for people with POTS.

    Get one for the upper arm. As mentioned, the wrist is not as reliable.
     
  6. Marg

    Marg Senior Member

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    Yes, get one. I have an Omron and it shows heart rate as well. You can do the poor man's tilt table with it. Check out www.oiresource.com for instructions, easy.
     
  7. Tristen

    Tristen Senior Member

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    IMO, it's an essential tool. It helps put a sign to the symptom. And that can be useful in many respects, especially monitoring med effectiveness. I too have an electric digital Omron that measures both BP and Pulse. Being electric and digital is essential when doing ortho's (BP and Pulse, lying, sitting, standing) alone. Try doing that with a stethoscope and sphygmomanometer. My Omron is 10+ years old and has lots of mileage on it, and still works fine.
     
  8. Tulip

    Tulip Guest

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    Thanks i'm now convinced and will shop around for one, online is probably the cheapest place though.

    I don't have POTS, I have had a problem with my bp having massive drops whilst I am going about my normal daily routine for many many years. I have even passed out on a peak hour train on my way home from a course (that was when I was just getting sick) thank god the doors were closed or I wouldn't be here now!. I haven't been able to get any help from doctors either. I have no idea what is going on.
     
  9. taniaaust1

    taniaaust1 Senior Member

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    I suggest to get recommendations from others here on what types they find best rather then going for the cheapest.

    I used to borrow my nannas (which I dont think was a cheap one) but found I had a lot of issues with hers due to my BP behaving so strangely.. it ends up erroring out A LOT to the point that at times I cant even take mine. (i think the narrowing of the pulse pressure I get at times causes the erroring).
     
  10. TinyT

    TinyT Senior Member

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    Hey Tulip,

    Seeing as you are a fellow Aussie- I might be able to help you with names of Doctors who are dysautonomia aware and experienced with treating/diagnosing blood pressure disorders and autonomic dysfunction. It sounds like it could be neurally mediated hypotension/neurocardiogenic syncope (same thing). http://www.dinet.org/NCS/ncs.htm
    Does it happen straight away when you stand up or after prolonged periods?

    If you'd like I can PM you some names of Doctors who are good with autonomic dysfunction (cardios & neuros mostly). If you want to PM me your city or state
     
  11. taniaaust1

    taniaaust1 Senior Member

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    TinyT ..do you know of any for Sth Australia. I have had Dr Burnett tell me my BP dysregulation was a sympathetic nervous system dysfunction but other then that he didnt suggest anything for it (just said to tell my doctor but my doctor wont listen).
     
  12. Tulip

    Tulip Guest

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    I meant that online you can get cheaper deals on good quality ones that you wouldn't get at the shops. I have no plans to buy a cheap and nasty one :D
     
  13. Tulip

    Tulip Guest

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    Thanks TinyT,

    I get both types but mostly it just happens when I have been moving around, like when i'm at the shops or even just walking down the street.

    I will PM you.
     
  14. Sushi

    Sushi Senior Member Albuquerque

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    Hi Tulip,

    I also think it is essential. There have been times when I felt really, scary bad, and my BP machine was able to tell me that my BP was jumping up and down hugely as was my pulse. When this was happening and once I saw from the machine, what was going, on I took a big dose of magnesium, potassium etc. and then my BP stabilized.

    I used to be a patient of a dysautonomia specialist. He advised me to get the kind that has a cuff on the upper arm, has a digital read-out and memory, but does not pump up automatically. Since our BP is often too low, the automatic kind can pump up way too tight for comfort (and make you feel worse!). He said to get one with a bulb pump which you can do with the other hand. Then you can pump it up as much as you want.

    In the US, they have drugstore brands that are very reasonably priced and even give you an in-store rebate, so though mine is a good one, it only cost about $20 with the rebates. (CVS brand). I know you are in Aust. and this won't be the same, so this is info for those in the US. But, a good one is worth it. I used to just take my machine to the doc and he could scroll through its memory and see the pattern of my BP by date and time.

    Sushi
     

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