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Hello everyone,

On some great advice from the members on here, I invested in a blood pressure monitor. I was very careful to make sure I had the right cuff size etc. I put the cuff on as loosely as it can be without it slipping down my arm and whichever arm I try it on, it hurts so much when I take my blood pressure I feel like my arm's going to explode and end up numb for ages after! I have tried it a few times now and I really can't work out why it does this. I was hoping to get a record of readings written up for my appointment next week but I don't think I can do this anymore. Anyone think of why this could be? I know the cuff's not too small as it's quite loose.

My other question is, and it's probably a silly one, but if you have POTS would you be symptomatic all day every day because mine doesn't happen like this. The readings I have managed to do haven't been too alarming either but I have been feeling a bit better the last few days anyway.

When I'm symptomatic it really is bad and I cannot even go out but then I have 'okay' days.

My question is would the readings only be high readings if I was feeling unwell? If I managed to keep up the readings and they were okay for over 3 days, would that mean that it couldn't be POTS and must be something else?

Also how else can I take the readings without a cuff? In the past, when I remember having my pressure done at the GP's office, it never hurt like this but obviously I won't be able to go there every day to get it done. <_<

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Hi,

You don't want to apply it so it is loose like you are describing. Make sure to follow the directions with that come with the monitor. It is most likely having to fill higher than it normally would because it is so loose. It has to fill a certain amount and sense that it is plenty snug to work, but if it starts to loose it is probably overshooting.

Hopefully that will work!

<_<

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Hi,

You don't want to apply it so it is loose like you are describing. Make sure to follow the directions with that come with the monitor. It is most likely having to fill higher than it normally would because it is so loose. It has to fill a certain amount and sense that it is plenty snug to work, but if it starts to loose it is probably overshooting.

Hopefully that will work!

:)

Hi Ajw,

Thanks for your reply. I followed instructions carefully (it says to be able to fit two fingers under cuff). I tried it like that and it hurt so I loosened it. Maybe too loose like you say. I will try this again <_<

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Hello,I am newly diagnosed with POTS and used to wonder the same thing regarding being symptomatic all the time.

My symptoms definately fluctuate,I may have a few better days or sometimes reasonable weeks then a few really bad weeks(If only I knew what I did right to have a good day!).My symptoms also fluctuate throughout the day with the AM being the worst and late PM usually better.

All the best with your appointment.(take lots of lists if you have brain fog).

Melanie.

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Or, you could just be a freak like me! I have never met a blood pressure cuff that didn't hurt (mine that inflates around my wrist is my favorite). I have been known to mess up readings because the cuff hurts/is so uncomfortable that I will unconsciously hold my breath at the docs. Same thing happens with blood draws, it is very painful. Must be something with my arms/veins. Other female relatives complain of similar problems (just not as severe) and are hard sticks as well.

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Or, you could just be a freak like me! I have never met a blood pressure cuff that didn't hurt (mine that inflates around my wrist is my favorite). I have been known to mess up readings because the cuff hurts/is so uncomfortable that I will unconsciously hold my breath at the docs. Same thing happens with blood draws, it is very painful. Must be something with my arms/veins. Other female relatives complain of similar problems (just not as severe) and are hard sticks as well.

Hi Elfie,

Your post made me laugh! I felt like a freak for complaining about taking my blood pressure. That is exactly what I do too - hold my breath when I take it because it hurts so much. Probably haven't been accurate readings at all. It's just if I don't get them done I won't have anything to show the new doc and she probably won't refer me and draw the same conclusions as the rest = that I'm a crazy woman making it all up out of boredom!

Thanks for your reply.

Deb x

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Hello,I am newly diagnosed with POTS and used to wonder the same thing regarding being symptomatic all the time.

My symptoms definately fluctuate,I may have a few better days or sometimes reasonable weeks then a few really bad weeks(If only I knew what I did right to have a good day!).My symptoms also fluctuate throughout the day with the AM being the worst and late PM usually better.

All the best with your appointment.(take lots of lists if you have brain fog).

Hi Melanie,

Thanks for your reply. So strange because I often think ooh I had a good day today what didn't I do or what didn't I have that was different, desperate to find some reason for why I feel so bad sometimes. I have some days where I'm convinced I'm getting the flu where I ache and feel so weak and shaky. The next day I'll feel okay. Never great, but okay. For instance today I have a headache day - a day where I wake up with a headache and it just doesn't go, but because I don't ache and haven't almost fainted, just felt lightheaded, I think I have had a good day! You sound like you know what I mean there.

My question was a bit confusing but what I want to know is if I am feeling okay ish would my blood pressure appear normal or could I feel okay but the readings come out "potsy" Now my appointment is nearing where I have actually found someone who might listen, my readings seem okay! I didn't get the machine until the weekend so I have never monitored it before and have no idea what it would look like when I'm having a bad day. My question is if I went to the doc with completely normal readings, will she still refer me to a neurologist? Knowing my luck, I'll probably be fine right up until after my appointment <_<

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my symptoms also fluctuate.

im sure this is what is supposed to happen with pots cause almost everyone on here has said that they have good and bad days.

i hate that i have,for example 2 good days 8 bad days 2 good days 6 bad days.

Hi and welcome!

I read your other post too. Did you have to monitor your blood pressure at home before seeing a doc? If you were having a good day, did your readings come out normal or "potsy" I am having a couple of good days and am supposed to be monitoring it to take to see doc. I have a horrid feeling they will come out normal and I won't get referred to a neurologist. Don't get me wrong, it would be wonderful if they all came out normal, but then it wouldn't explain why I feel so awful at other times. It's a confusing question but I just wondered what others' readings were when they were having a good day?

Thanks.

Deb x

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I dont take my BP that often but sometimes when I have felt really bad it has been normal.I saw a cardiologist who suspected pots but it wasnt diagnosed until I had full autonomic testing and a prolonged tilt table test.My BP did drop after meals and after standing for a few minutes and was low first thing in the am but sorry I dont know if thats always the case with pots.I did the poor mans tilt test a few times with a heart rate watch(found how to do it under search here)and that led me to believe it was pots.I have learned that if you feel the doctors are missing something you need to push them for tests even though you feel like a hypochondriac!Take a list of what symptoms you have that you think match the condition. Sorry I cant be more helpful on BP front.

Melanie.

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I feel very clostrophobic when having my bp taken like I can't get out.]

I too tend to hold my breath like i'm scared. And it does hurt. My family and the docs

thought I was crazy. So good to know that there are more like me.

Maybe I'm not so crazy.

Tracy

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I find that bp cuffs always hurt and leave a mark. It's just something I have to get used to, especially when you're hooked up for monitoring and it takes for every three minutes.

[shrugs] There's a lot of pain you'll get used to after six years. XD

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