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Highly erratic BP and Postural Tavhycardia

Posted , 6 users are following.

ajkay
ajkay

I am 20 and was disagnosed it POTS around 3 years ago. Aged 12 I developed complex regional pain and have problems with my autonomic nervous system

When I was first diagnosed locally a 24hr halter and tilt tables showed my BP was highly erratic to the point where it generally was high but there were 3 or 4 instances where it fell as low as 55/37 with a pulse around the 200 mark

My local hospital were worried that beta blockers, sertraline or clonidine usually used in treatment of POTS would not be adviseable and I was referred to a specialist autinomic unit in London who tried to repeat the 24 hr halter but the arm cuff either blew up too tight and my arm turned blue or kept reinflating but gave error readings

I went for the results yesterday. They took my bp stiing at 154/117 and asked me to stand for 2 minutes and again 3 cuffs and 2 machines failed to obtain a reading

At the appointment I was shown my 24 hr trace but it didnt show much as the readings were taken 30 minutes apart and the cuff had to be removed after 7 hours so we only had evening and nightime readings. It showed mild hypertension and a high baseline heartrate so they are starting me on propranolol

My concern is this wildly erratic BP. Its worse in the day but the hospitsl say everyones BP fluctuates. When I said it changes from 60/40 to 190/130 in 3 minutes they looked at me like I am making it up so Im pretty puzzled tbh

I have a home monitor my local hospital advised me to get so I can check how things are when I feel poorly

These are readings at 9pm yesterday laid on the bed watching TV all taken 5 mins apart (bp followed by heart rate)

170 106 99

151 94 119

181 124 115

145 61 125

169 103 136

100 62 100

161 97 140

150 126 107

Has anyone experienced similar or have any idea what is happening.

London did blood tests which the ruled out adrenal tumors with. I do know from my pain cindition is in permanent fight or flight mode yet adrenaline is on upper end of normal (or was in the 1 blood test conducted)

Sorry this is very long but I constantly feel ill and nothing seems to help atm

Thanks

Alison

0 likes, 5 replies

5 Replies

  • AlexandriaGizmo
    AlexandriaGizmo ajkay

    Posted

    Hi I am so sorry you are feeling unwell but I am rushing around today so will message you later, relax and remember anxiety can do this as well I know I'm the same xx
  • fredric01310
    fredric01310 ajkay

    Posted

    Alison

    You sound like me. I am 62 and have started tinitus and insomnia for last 2 months. I am taking 2 meds fro BP and now one for sleeping IMOVAN. (which I hope to get off of) Any ways I have found my problems are related directly to my stress level, since I have been going through a lot latetly. But I will probably never know if I need to start BP meds at 62 because before that I have never relied on pharmaceuticals of any kind, not even asprin. So now I realized I have been obsessing about by bp and it is up and it is down regardless of the BP pill I am taking. I have started going to a psychologist who specializes in insomnia / anxiety. I also began biofeedback meditation and am trying to resolve some emotional issues, that just may be the cause.  I bought a unit called an emwave 3 and it seem to be helpful

    Good Health

    You are too young to start on pill if you do not really need them

    I know what it is like to obsess and have fear. That will cause the symptoms of POTS in my opinion

    • ajkay
      ajkay fredric01310

      Posted

      I appreciate where you are coming from however I have no control over what my sympathetic nervous system does or does not do. I dont really stress about it. I live in chronic pain with no medication. As a result of hypermobility and ehlers danlos my blood vessels expand further than normal and blood pools in my feet on standing. My body finds it harder to push blood back to my barain hence PORS. Yes stress does make things worse but the are not a cause. They compound the effect

      My body seems to be wired wrong within the sympathetic system and as a result more adrenalin is released than I need. That seems to be why I get a lot of issues. Stress further increases this and ive had CBT to help realise that I shouldnt throw more fuel on the fire of cycle of problems.

      The question is how can my BP fluctuate within minutes so badly tgen go back the other way. Seems to be more about regulation of the mechanism than stress as I would see stress increasing bp and hr but certainly not causing such erratic swings and POTS

    • MrsO-UK_Surrey
      MrsO-UK_Surrey ajkay

      Posted

      Alison, you poor thing to be suffering so at such a young age.  We aren't medics on here and really only have experience as far as our own various blood pressure problems are concerned.  Have you tried looking up POTS, Ehlers Danlos and Postural Tachycardia sites on Patient Experience or even on other forums such as HealthUnlocked?

       

  • swinkster8
    swinkster8 ajkay

    Posted

    Hi Alison,

    Sweetie I know from experience that taking your blood pressure so close together like you did can cause anxiety which will make your BP erratic.  In the world we live in today, stress can be a very big factor to all kinds of sickness and disease.  The key is to try and eliminate excess stimulants- to your body and mind.  Test yourself with this:  As you are watching TV, reading info on the internet, or even listening to the radio, check yourself to see if it's making you tense.  Are your shoulders hunched forward and tight?  Are you holding your breath? (happens to me) Maybe you are making a fist with your thumb tucked into your hand? (a sign of stress and insecurity) You could also be clenching your teeth, scrunching up your eyebrows, or you may be bobbing your leg up and down with your foot on the floor very quickly.  If you notice any of those, turn off whatever it is that's making your system upset and then close your eyes and start with the top of your head and just relax everything- your face muscles will probably need to be relaxed as well, but go all the way down to your feet, consciously relaxing yourself.  Breathe deeply but don't make yourself uncomfortable as if you feel like you are out of air.  Another key issue is diet.  I live in the United States, so consuming GMO and pesticides is the top of my 'No-No list'.  GMO's will stay in your gut causing all kinds of problems and some pesticides wreak havoc on your nervous system.  I would recommend eating a diet of organic fruits and veggies- try to buy fresh to stay away from excess sodium.  You can eat dairy and meat if you want to, but buy grass-fed beef and chicken, and make sure the cuts are lean.  Fried meats aren't good either. Don't consume diet foods- especially soda.  Eating like this for just a week should make you feel better.  The dairy should be from organic cows- grass fed is best but over here it's really expensive.  You might also try ASMR to relax. My favorite is Olivia Kissper on youtube.  It seemed strange at first but I quickly got used to it because it's SO relaxing!   Has your doctor checked your thyroid to make sure it's behaving?  That was my cause of my constant adrenalin problem.  I know how that feels- it's really terrible.  You are so young to be having such problems, I surely wish you well and will pray for you to be better by any means!

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