High Blood Pressure

[flop]

I always used to have blood pressure in the low to normal range. Typically Systolic 100-120 and diastolic 60-75.

When I had those sorts of BP numbers I took meds like fludrocortisone, midodrine and a combined contraceptive pill to raise my BP (without much success).

Over the last year or so I haven't really monitored my BP much as there didn't really seem to be any correlation between my BP and how I was feeling. I've recently had my BP checked a couple of times for routine things and was very surprised to see that it was high on each occasion. I have checked it at home several times over the last month and found that my systolic lying was 124-135 but systolic standing was 142-162, diastolic was 80s lying and 90s standing.

Yesterday my postural numbers were:

lying BP 141/88 HR 97

sitting BP 150/97 HR 111

standing BP 149/98 HR 127

Has anyone else found that their BP has gone up a lot like mine has?

My current medications for POTS are Ivabradine 5mg twice daily (slows HR but doesn't affect BP) and Paroxetine 20mg once daily (Paxil / Seroxat).

Even with high BP I still feel really dizzy and tired and can't tolerate standing up for more than a few minutes.

Flop

[mkoven]

Sounds like checking in with your ans doc makes sense. You've had a med change recently, no? Since you have eds, it's important not to let your bp stay high over the long haul. Have you had an echo recently? with my recent scare about my aorta size, the doc told me the importance of not letting bp get/stay high.

[arizona girl]

Hi flop, I've had ortho hypertension/tachy from the get go. I always feel fatigued and jittery when I'm vertical. When my heart rate gets high enough to cause presyncope, then I get very dramatic symptoms of lightheaded, nauseau, ringing ears, etc. etc., before I go down. I'm pretty sure it was the spiking heart rate that drops me and makes me feel ill.

Also the beta's have taken all have raised my BP and caused weight gain, while it lowered my HR. I don't know much about ivabradine or the anti depressant, but they may raise BP.

You know the old story this pill fixes this then you need to take something else to fix the side effects.

That recent poll, seems to be showing a lot of us have the hypertension. I'd run it by your docs though since it is a change for you. Hope this helps!

[flop]

Hi, thanks for the replies.

Medication changes - I have been on Paroxetine for nearly 3 years. I started Ivabradine 6 months ago (swapped from Bisoprolol a beta-blocker because of allergies).

I'm seeing my local cardiologist in 2 weeks (sort of why I am posting now) but don't see my ANS neurologist until the end of the year.

I think that my last echo was in 2005 (normal), since being diagnosed with EDS no-one has even suggested echo monitoring, I was told that only Vascular EDS was a problem for aortic dilation.

I don't understand how I can have a BP this high but still feel so ill. Previously I was told that my symptoms were all due to low BP so the approach was all based on trying to raise my BP. Now that I have a high BP and am still tachycardic - what do we do next???

Flop

[mkoven]

good question! I guess a lot of us do a strange combo of overconstricting and over dilating so that an arm measurement doesn't really show what's going on elsewhere--like heart and brain. I've been told than for ans dysfunction, the bp number may not say much about cerebral perfusion.

I was told that I needed annual echos. This is from a lead researcher on the genetics of eds. There's a lot that's not understood about the different types of eds--so even without vascular eds, still good to keep an eye on things. They are finding a lot of crossover. still trying to sort out if mine is any bigger. apparently a lot of hypermobile and classical edsers have somewhat enlarged aortas, but they aren't sure if it ever progresses. hence the need for followup.

[flop]

mkoven - thank you, I'll be sure to ask my cardiologist for an echo because of the EDS but especially now that my BP is high too.

Flop

[skyblu]

I can go through phases where my BP runs on the high side. That recently happened to me after I got a virus. My BP ran high during the virus and for about 3 months after I recovered. I'd get readings like 140/96 when my BP is normally 90/65 or 80/50. I stopped taking in extra salt and then out of nowhere my BP started running more on the low side again. I didn't feel any better when my BP ran high, in fact I might have even felt worse. I don't understand it all.

[ramakentesh]

Seems strange.

Orthostatic hypertension can occur in POTS and despite what some doctors may suggest, it does not always mean that you are displaying a hyperadrenergic response. What you described seems almost like essential hypertension.

Some EDS patients were found to be hyper-responsive to beta 1 stimulation but the connection between hypertension and beta receptors is scetchy.

My concern for you is that if this is treated with some conventional antihypertensives you may find that your dizziness is worse rather than better.

Out of interest do you feel any better hypertensive or has there been no improvement? The cerebral malperfusion doesnt always relate to blood pressure.

[iheartcats]

Mine was fluctuating between your ranges for a few months an I was upset about it. I was told that can happen in POTS (not much help, but supposedly not out of the ordinary).

Yours sounds like it is staying consistently high, though...I remember my EP told me not to worry about anything below 140/95 so you may want to work with your docs to find a 'safe range' for your issues/condition/health.

I still take a BB so I assume that should be lowering mine, and take Midodrine to pump it back up to something normal because of that.

Good luck and let us know what your doctors say because I still think it's bizarre how BP fluctuates so much in some of us.

[bizbiz]

good question! I guess a lot of us do a strange combo of overconstricting and over dilating so that an arm measurement doesn't really show what's going on elsewhere--like heart and brain. I've been told than for ans dysfunction, the bp number may not say much about cerebral perfusion.

I asked my specialist this exact question and he told me that brain blood flow falls independent of blood pressure. He said in earlier research studies they have proven this with ultrasound measurements of blood flow in the carotid arteries.

[flop]

Thanks,

Ramakentesh - I was wondering about essential hypertension but there doesn't seem to be a reason for me (female in my 20s) to develop it, we don't have a family hx of hypertension.

Unfortunately symptoms wise I feel worse now than I did a few months ago and I am having more episodes of syncope.

I don't think that my cardiologist understands / believes that arm BP doesn't match symptoms. I am fairly sure that he will say "oh good your BP is bettter, you are cured".

Grrr, I just wish I understood exactly what was happening in my body so my doctors could have a better idea about how to control my symptoms.

Flop

[yogini]

Flop,

I got high BP and had to adjust my meds to cut out florinef. Are you wearing compression stockings or doing anything else to boost up your BP? Does your BP drop after standing for a while or stay high? Hope your dr has some answers.

[flop]

Hi Yogini,

I used to take Fludrocortisone and Midodrine to raise BP but I have been off both of them for over 18 months. The only med that I am taking that could raise my BP is a combined contraceptive pill (Yasmine). I used to take Yasmine with no problems and had decided to go back on it last month to try to improve my acne. It was when my GP checked my BP before re-starting Yasmine that I got the first high BP reading. She was happy yo prescribe the pill for me but I am now wondering if I should stop taking it - afterall I'd rather have acne than do myself damage from high BP.

I have cut back on the salt in my diet too - I hate salt but used to add it to boost my BP, I have gone back to no added salt.

I haven't done repeated BP measurements whilst standing, I'll go and find my BP monitor and have a go now.

Flop

[pat57]

I was normal til perimenopause

then ,clearly low

and now ,after menopause , I'm, normal again

[flop]

A few hours ago I did a whole load of BP and HR measurements. I did sitting and lying measurements then stood up and kept checking my BP for 35 mins. I was amazed that I managed to stand for so long and didn't feel too dizzy. By 25 mins I was feeling very hot (moved fan so it was blowing directly on me) and I went pink / mildly flushed. By the end my feet and legs were slightly discoloured purple (not obvious) and my capillary refil time on my shins was delayed to 5-8 seconds. I did keep sipping water when I wanted it during the time I was standing up. I didn't walk about, just stood near my bed (and listened to an audio book).

I've tried to copy the data I collected from an excel spreadsheet. I hope that the formatting doesn't get all messed up when I submit my post. It should be in columns for position, time (0 for immediately on standing, then number of minutes after standing up), Systolic BP, Diastolic BP and last but not least heart rate.

Position Time Sys Dias HR

Sitting rest 136 96 88

Lying 0 137 83 84

Lying 5 131 82 75

Standing 0 127 89 113

Standing 1 130 94 112

Standing 2 error

Standing 2 error

Standing 3 135 92 100

Standing 4 130 96 103

Standing 5 131 95 101

Standing 7 131 102 107

Standing 10 118 93 105

Standing 15 134 105 112

Standing 20 138 108 116

Standing 25 141 99 105

Standing 30 error

Standing 30 133 96 114

Standing 35 136 101 113

Sitting 0 144 98 98

Lying 0 error

Lying 1 137 87 83

Lying 5 133 91 85

If anyone has any thoughts on what might be going on or has similar numbers please share.

Flop

[ramakentesh]

Its not super high. So I wouldnt worry too much. Mine can be as high as 158/105 standing but I generally feel better when its like that.

The fact that you feel worse might suggest a vasoconstrictive form of POTS, although that doesnt compute with EDS.

[flop]

Thanks,

I had previously wondered about a constrictive form as meds like Midodrine made no difference to my symptoms. I also have horrible allergies and have previously tried to get my doctors to test me for mast cell activation disorder. My immunologist doesn't believe in MCAD and says that my serum tryptase (random sample) is normal so not a mast cell issue. My total IgE is only 15 so doesn't make sense that I would be "so allergic". I am undergoing injection desensitisation to house dust mite at the moment and will have desensitisation to grass pollen over the winter. For allergies I am currently taking:

Fexofenadine 360mg twice daily (six times the usual prescribed dose)

Ranitidine 150mg twice daily

Montelukast 10mg daily

Flixonase spray

Cromoglycate eye drops

Last week my immunologist gave me Prednisolone 20mg daily for a week (BP had already changed before pred).

My Dad told me a few days ago that during one of my POTS "episodes" that I had flushed bright red and stayed flushed for a couple of hours.

BP just now 152/98 hr 82 sitting cross-legged on my bed. Looking back to Feb/March time the reading would have been 110/65 so quite a big change for me. I just wish I knew / understood what was going on in my body and the mechanism for my symptoms. I will be seing my local cardiologist soon but I have no idea what to ask him to do / try next (from all my reading I think I know a lot more about POTS than he does!).

Flop

[mkoven]

I'm sure you do know more than he does-- by sheer necessity! Those bp numbers don't look bad, actually, but what is key is that you feel bad. Are you wearing compression? I think I remember that you had knee-highs 30-40. If you are unable to get waist-high without an rx, would you try a really tight girdle? I definitely feel better with abdominal compression, but don't know what would happen to my thighs if I were compressed on lower legs and stomach. It may still not though provide all the help and answers you need.

My new sense is that doctors who are also researchers are more likely to be genuinely curious and want to think outside the box. Sometimes doctors who treat a lot of ans patients might have that type of curiosity. But if you are one of a handful of patients with Pots that your doc treats, and he is primarily a clinician, he may not be as interested in pursuing novel approaches and mechanisms. Some docs, however, may be willing to respect your knowledge/be willing to learn with you. It's clear that you are very knowledgeable/educated about health matters. Does your cardio understand and respect that?

[TypewriterGirl]

Hi Flop,

I know this is an old topic, but were you ever able to have this resolved or find out the reason for it?

[flop]

Hi TypewritterGirl,

no I didn't get a satisfactory answer. When I saw my cardiologist he said that my high BP was because I am fat and that I needed to do lots of exercise to loose weight. I accept that I am fat (overweight not obese) but my weight has gradually crept up over the 3.5 years that I have been taking Paroxetine. For almost all of that time my BP was low, so I don't see that a sudden leap up in BP can be due to gradual weight gain. The cardiologist also had no answer for why I felt more ill with a high BP, he blamed that on the hot weather and being fat.

In November I went for follow up with my autonomic specialist. Unfortunately he was away at a conference and I saw a different consultant neurologist. The appointment was a waste of time (he told me POTS was causedby a growth-spurt in my teens and I would grow out of it by age 23 - hmm, I was 24 when I became ill and I am now 30).

Later in November I saw my cardiologist again but he said he needs the ans doc to tell him what to do. So now I am waiting for my next ANS appointment which isn't until June 2010.

Oddly enough I had a patch of time in January when I felt much less symptomatic than usual. During this good patch my BP was systolic 105-120 and diastolic 70-85.

Flop

[persephone]

Hey Flop, how are you and your wrist doing? It's interesting that this is raised now because I've had intense nausea, vomiting, headaches and dizziness but with a HIGH bp.

My systolic is consistently 150 or higher, and my diastolic is 100 or higher.

Today I tried to take a reading and the last number the monitor showed before crashing and coming up with ERROR was 260 systolic. I am not joking!

The chest pain is horrendous.

I too am fat. Stupid Epogen meds. But that shouldn't explain blood pressure like this.

Also- you are NOT actually fat. In your pix you look very slim! Whereas I have a big balloon face...

[flop]

Hi Persephone,

if you mean my facebook picture then there is a reason that I look slim - it was taken before I got POTS when I was about 55kg! I have been struggling to find a recent picture where I don't have a double chin so just use that old photo.

Flop

[tilly]

I would like to add that i have erratic BP episodes, of it being low 98/60... but very highs normally high when i have SVT or a prolonged tachy if i try to sustain any activity ... i go bright red flushing and can get nauseous when it is high, but dizzyness when it is low .. i am not clued up medically on how you BP works ..

but i wonder Flop, have you thought it could be naturally changing because of the menopause ? .. not suggesting that your going through it at all ... but i started it early and it ended when i was 43 .. and still have symptoms even though i have not had any periods for eight years .. the menopause alone can muddle up your body .. my high bp's have ranged between are 178/110.. a little higher on occations .. 198/120 ... i had a 24hour BP monitoring and it showed i had high bp lot of the time ... and some lows but my doctor said i did not need treating as it was not constanly high ! ..

tilly

[persephone]

I hope I'm not in the menopause- I'm 28! Flop - I have double chins in all my pictures nowadays. Tis the price I pay for being able to walk most of the time...

Are you out of hospital - can I text you / ring you?

Would be nice to have a catch up!

x

[Rene S.]

I would like to add that i have erratic BP episodes, of it being low 98/60... but very highs normally high when i have SVT or a prolonged tachy if i try to sustain any activity ... i go bright red flushing and can get nauseous when it is high, but dizzyness when it is low .. i am not clued up medically on how you BP works ..

but i wonder Flop, have you thought it could be naturally changing because of the menopause ? .. not suggesting that your going through it at all ... but i started it early and it ended when i was 43 .. and still have symptoms even though i have not had any periods for eight years .. the menopause alone can muddle up your body .. my high bp's have ranged between are 178/110.. a little higher on occations .. 198/120 ... i had a 24hour BP monitoring and it showed i had high bp lot of the time ... and some lows but my doctor said i did not need treating as it was not constanly high ! ..

tilly

Hi Tilly,

We could be twins. I've also had readings as high as yours although my diastoliic is usually within normal range. I did the ambulatory b/p monitor twice and showed high readings during the day 168/75, 171/80, etc. As soon as I sit down, it usually comes down to 140/65. It's frustrating, because some drs won't treat it because they say unless it's high 65% of the time, there is no need too. Although I feel pretty lousy when it's high. Then again at night, it goes as low as 90/58 and then I get horribly tachy. I've tried the betas and they raise my b/p. Tried CCB and hated them. The last I was on an ARB, Cozaar and that just made me tachy. Now one of the drs wants me to try Benicar which side effect profile lists tachy and palps as side effects! And my pressure changes within 3 minutes. Very frustrating. Prior to last year, and being on hrt, my b/p was always 90/60 and hr in the 60's. I did have an echo yesterday because I swore that I was wearing out my heart.

I too went through early menopause at 43.

This whole thing is frustrating. I can go up and down 40 points within minutes. Crazy.

Hope you can figure it out = when you do let me know!

Rene