Need Some Opinions Please!

[andybonse]

Hi guys ,

When I had my 24bp monitor the other week and my ttt, I kept seeing readings on the arm cuff blood pressure of 140/80, now when professor Mathias called me he said my bp was low normal, i'm confused, unless the 24h bp and the continuous beat to beat bp is more accurate??

So at home today was sat cross legged on floor for a few hours watching tv and playing xbox, slight movements in position were making my heart beat hard and fast and my bp was 145/80 for a few minutes then I sat still and it went down to 115/60,

Could I be right in:

A) The movements are causing blood to fall down to lower limbs and my body is trying to compensate for it?

Because I was sat for a while blood had pooled so my body reacted to get blood back to the heart etc

C) An imbalance in the blood pressure throughout my body so its not 140/80 really

He has prescribed me 2.5mg Midodrine which is on its way, my blood pressure is always 105/50-125/85 when im still and not moving posturally, maybe Midodrine will stop the big jumps due to the pathology above? It just makes me so nervous to try Midodrine due to the hard heart beats and higher bp when I do move.

When I stand up however, my bp does not shoot up, its more or less lower positional changes, like being sat on the floor crosslegged and then pulling my self onto the couch and sitting with my legs down as you would normally.

Based on this I'm not sure I'll try the midodrine.

[Katybug]

I can't sit cross legged at all anymore. I think my eds has made my circulation so weak that having my legs bent like that just doesn't allow blood flow. I don't know what it does to my BP readings as I've never taken a reading in that position but I know it makes my legs fall asleep and makes me feel deathly ill.

[thegron]

Be careful with the midodrine. Make sure to monitor your BP occasionally while on the drug, especially whilst lying down.

[Lethargic Smiles]

I'm just clarifying -- are you saying you were moving a bit when you were taking the blood pressure reading or you were moving, then stopped and took the reading?

My blood pressure will be 140 on top if I am talking or moving during the reading, but if I am still, it is typically in the upper 90s/lower 100s. I believe what I experience is pretty normal and is just my body adjusting to my movement and also the movement/talking can mess with the machines ability to read.

[Chaos]

If I'm not mistaken, crossing your legs (or in your case sitting cross legged) is a "counter maneuver" that they teach people to do to increase blood pressure when they feel like they might pass out. So if you were checking it when you were sitting like that, I wonder if that might have had something to do with the higher readings?

[andybonse]

I took the bp after moving but was still while taking it. Just doesny make sense seems I wont take any treatments

My bp is normal and goes up not too high though with movement so how can I possobly be treated I give up.

[corina]

Andy, I think you should discuss this with your doctor. Ask him why he thinks you need the midodrine. I think your doctor knows most about you and your condition. In my opinion you should weigh out the pro's and cons and decide based on what you and your doctor think is best for you!

[dmjl27]

My bp also changes with movements (lying still while taking the reading, of course). Doctor said it's quite normal for anyone who has problems with constriction and blood flow, and is not a big deal. (talk with your doctor to make sure he/she's on same page)

Movements can either get that blood flowing again or be restricting it based on what the movements are. Never cross your legs or talk during readings.

The midodrine does help regulate swings. Your doctor can talk you through why he thinks this is necessary for you. For me, the crazy swings of BP make me feel very sick, so taking Midodrine was worth the few weeks of side effects I had to get used to.....I still have lots of swings, but they are not nearly as often or as dramatic. If your fluctuations don't bother you, then that's a different scenario. Make sure your doctor is aware that Midodrine CAN raise your supine bp (in many patients). I take Clonidine patches to help with those spikes, but I have a low normal bp of 90/60.

The numbers may not be anything to really hone in on...unless you are symptomatic and those symptoms are making you feel sick. If so, the midodrine could help with that. I agree with 'the Moderator'...have a nice long chat with your doctor to understand the why and the how of the prescription.

Good luck!

[andybonse]

Thanks,

It botheres me in the fact my heart beats hard for them seconds and is uncomfortable I hate it and light headed depending on the position change.

I can only assume the blood flow to the brain is reduced so my heart tries to increase bp to compensate what do you think on that theory?

My doctor is the best in the uk and ran all the tests so I trust him.

[yogini]

BP constantly fluctuates in healthy people and it's also normal for it to increase with any movement. That is why the 24 HR test is helpful - b/c it shows your BP over a long period of time. I am guessing that your dr was looking at numbers over the whole day and may not have been focused on any one point. When I first got POTS I found it helpful to take BP couple of times a day and write it down in a notebook. I also wore an HR watch every day for years, until I got to know my body enough that I could sense if my HR and BP were off without the machines.

Numbers are helpful, but I would encourage you to focus on how you were feeling. You can have normal HR and BP and still feel awful! (or the other way around, be off but feel OK). It's good you are under the care of a leading doctor to help you sort this out.

[andybonse]

My BP at home is always 110-130/50-80 so always normal, at the hopsital it showed at 136/77 as a median, so he gave me the Midodrine, I think its good as my normal bp is lower but i always feel rubbish even when its normal.