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Very high BP when standing with POTS. Please Help

Posted , 10 users are following.

Ahbaoum
Ahbaoum

hello

I'm 36 y male living in Germany. I'm suffering from horrible symptoms for 6 months,

I have got a POTS syndrome with heart rate jumps from 75 to 120 with standing and many other sever POTS symptoms "dizziness, fatigue, PACs, tingling feet, shaky feeling...etc".But what makes me crazy is that spike in BP especially the diastolic. My BP in when I lay down is 125/83 but when I stand up it go fast to 140/110 this makes me mad and scared me too much.

Nowadays I am scared to do any exercise or walk a short distance because I remember that crazy spike in my BP always above 100 diastolic when I'm standing in my foot and this is too dangerous and I read it is indicates coronary artery disease. I went to many cardiologist they mad echo ECG come back normal.

Please help me if any one has the same problem. I don't know what to do I'm going to see another cardiologist next week he will but a 24hr BP monitor. But till that time I am hopeless.

3 likes, 10 replies

10 Replies

  • claire45280
    claire45280 Ahbaoum

    Posted

    Hi Ahbaoum,

    I have the same symptoms you describe.  I'm 42, live iin the Uk and have had M.E since 2003.

    I have been dealing with an M.E relapse since April. I have been doing some reading up on it this time.  

    Prior to this last year was prescribed Arcoxia by a Rheumatologist for back pain. As this medication can affect blood pressure (high) and I have a strong family history of high blood pressure I took mine.  It was reading up to 155/105...

    However, during me research into M.E symptoms a few months ago I read about POTS and decided to do a laying and standing B.P.  I am now aware that on laying my blood pressure can drop to 97/53 and heart rate 75.  On standing it can go up to 170/115, the highest my pulse has been that I am aware is 143 (after hoovering my daughter's bedroom).

    I saw a Cardiologist a month ago after Sinus Tachycardia showed on the ECG.  I had a 24 hour heart monitor. The results arrived yesterday. There is enough evidence with symptoms whilst having an increase in heart rate.  I am now waiting for a Tilt Table Test. I don't know how long the wait is.

    I do emapthise with you, but it is a comfort to find someone with the same symptoms I have, as with POTS you only hear about the low blood pressure.  I think the raise in blood pressure is linked with Hyperandrenergic Pots.

    I have increased my fluid intake and this has been easing my symptoms, allowing me to stand for longer.

    Maybe someone else has this too and can help us both to improve.

    • Ahbaoum
      Ahbaoum claire45280

      Posted

      Thsnk you Claire. And I'm sorry to here that you are suffering from this problem.

      You are right I think our POTS typ is hyperandreneergic One. But the question is, I read that many POTS patients will improve and some will recover totally but what about this typ of POTS will it go away as well or not???

      I don't like to take a BP medication because of the side effects.

  • pam_87693
    pam_87693 Ahbaoum

    Posted

    Hi you should be seen in neurology. You need to have a table tilt test. Also a test for peripheral neurology. Your heart specialist needs to do a 24 hour heart monitor. I don't know how much is known about POTS in Germany, certainly in the UK POTS is treated in neurology. If you find you sweat excessively (hyperhydrosis) it would be worth doing a sweat test too. IF you have symptoms relating to food, note them down. While having the 24 hour monitor it is worth explaining in the UK we are tested resting for 5 mins BP, sitting 5 mins BP, standing 5 mins BP. Fast walking 3-5 mins BP, climbing stairs BP. This is as well as the full 24 hours. When I was asked to do these activities I had a form to note don't any symptoms and I pressed my monitor to override the automatic function to record the activity and any symptoms I had over the 24 hour period. Good luck, the symptoms are far worse than the tests believe me. I am sure they will get to the bottom of your problems and reassure you, I wonder if you are Hypermobile too. (Double jointed)
    • e73587
      e73587 pam_87693

      Posted

      Hi Pam, I know you wrote this two years ago but I can't and you enough.

      I too have high bp on standing 116/75 to 155/122 and a pulse increase to the 130's at times just standing up. Also have wicked palpitations on and off and not sure what my triggers are.

      I am hypermobile and off to see a geneticist in August... since I mentioned my subluxing rib (sternum). I've been fobbed off for the last two years and my tachycardia has been put down to 'anxiety' for that long. I have had two holter monitors which just showed sinus tachycardia and nothing further so no one was interested. I'm under a neurologist now and only had one appt. happy to hear I'm in the right place finally. Hoping to get a dysautomnia diagnosis or any diagnosis that might be helpful and get the 'it's psychological' off my back.

      Thanks so much for taking the time to write. It seems this bp spike thing is quite rare. smile

  • stephx
    stephx Ahbaoum

    Posted

    Please please tell me somebody is still reading this ! I had my son 8 weeks ago I got like flu symtoms / dizziness and just couldn't walk for weeks when I finally did stand up my heart would race but I thought I was anxious from been so dizzy so I went to hospital ecg was fine ect and was told to go home the dizziness / flu symtoms subsided slowly and then I had a tachycardia attack where my heart rate was going from 115-179 within seconds that calmed as I was panicking and then I sat down the doctor was amazed as my heart rate was 80 ok your fine he said about to tell me.to.go.home I stood up still hooked to the monitor and again heart rate flucating from 115-179 so again he said sit down my heart rate returned to 80-90 again stand up my heart rate went up again I was later put on a ward but discharged a hour later as when I was laid down and been monitored my heart rate was low again and apparently I wasn't in danger my bloods was normal! Anyways back to hospital a week later I said my heart rate is still going high and bp upon standing again given bloods ecg had a hour sleep in a hospital bed before seeing a doctor who then told me to wait for a holter and heart scan and to go home everyday now I am.living with knowing everytime I stand my heart rate is 115-170 ! I have a baby two other children and a home to run I'm starting to think it may be pots as I've always been dizzy standing in question but never thought to take my heart rate is akways have purple feet while standing too long or sat down with legs crossed ect I feel nausea at times randomly I get hot flushes for no reason I sometimes semi black out standing up from bending over and my heart races ! I think I've had it a very long time but since giving birth it's got worse and I feel it's disabling
    • bombsh3ll
      bombsh3ll stephx

      Posted

      I can totally relate to what you're going throught steph, I have had the same for 2 years. I have 2 young children too and it is disabling, every day is a struggle when you're close to passing out all the time.

      I just had a tilt test, I haven't had the formal result yet but at the time they said it showed nothing significant. I have all the symptoms of POTS though and have checked the HR increase myself at home many times which fits.

      I just wish I could get some help - I am currently trying to get a referral to the autonomic centre in London.

      Sending you a big hug,

      B

    • brittany45348
      brittany45348 stephx

      Posted

      Stephx I was so relieved to see your post, I know it's a year ago you posted but I am going through something very similar to you and I'm curious to see what happened ? Did your symptoms ever improve, were you diagnosed ? I have rebirth to twins 7weeks ago and my pulse is also extremely rapid when I stand and all blood work comes back normal. Would love to hear from you... hope you're doing better xx

    • Potsy1990
      Potsy1990 brittany45348

      Posted

      Hello i see u got no reply i have had same experince i had my baby 2012 since i have had pin needles in my legs arms belly like were i had the csection meds to numb .also had headaches nausea shakes pain termors dizzy weak very unwell i struggle look after my children i got ignored i also have foot drop . I been treat terrible at doctors it all in ya head ...then i had test i have dysautomia told up my salt and water my heartrate and bp go low and reallly high 193 once and my bloodpreasure go sky rocket and low . Best advice i can give up is water and salt and try get your own fit bit and bp montior go to doc and ask for a tilt table test or a poor man standing test i hope u feeln better i just want u to no this is real it not in ya head keep fighting i hate say it dont get much better i need a chair for some things but we must for our children i only young so it hard very hard i in my twentys take care
  • deborahatx
    deborahatx Ahbaoum

    Posted

    Me too!

    Orthostatic hypertension!

    117/78 lying down

    145-156/96 standing

    167/107 after driving

    I haven't gotten a POTS dx but have all the symptoms & I have EDS & MCAD, so it's very likely.

    I don't want BP meds, I tried them a few years ago. I had anaphylaxis to beta blockers. (EDS/MCAD)

    The swelling was so bad from ACE inhibitor that I couldn't bend my legs. I was exhuasted but had insomnia, brain fog, forgetful. It was bad so I got off them. Plus they didn't make it better.

    Still researching.

    Magnesium supplements & ashwagandha supplements are helping to lower it but it's still too high.

    But I also have Atlanto axial cervical instability & that has all the same symptoms

    http://pleasetapemebacktogether.blogspot.com/p/crainial-instability.html?m=1[/b]

    • peter01729
      peter01729 deborahatx

      Posted

      Hi Deborah, the thing that jumped out at me from your post was " I had anaphylaxis to beta blockers. (EDS/MCAD)"

      Now if you click on my discharge note below, hopefully you can read in the top r.h box, "Allergies, Active Bisoprolol Anaphylactic shock" 

      What was your allergic reaction to beta blockers like? I wouldn't have thought mine to be "Anapgylactic" as my throat didn't swell or anything, just that my heart rate went so slow that I was barely conscious and the nurse couldn't detect a pulse.

      What I will say though is that as soon as I took beta blockers, I could no longer feel my lungs work, I felt like a drunk zombie, turned me into an old man overnight.

      They took me off beta blockers last March but the symptoms remain, especially the drunk dizzy feeling and the fatigue.

      At present I am awaiting an appointment with Autonomic Neurology.

       

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