high BP which isnt high BP/ SNS dysfunction

[taniaaust1]

  Ive been told I have a dysfunction with my Sympathetic Nervous system (ANS).  I have CFS and sympathetic dysfunctions are normal with this condition, the thing is my specialist said im the most widely fluctuating BP he's seen yet with this condition.  (the SNS dysfuction usually causes CFS people to have low BP).

My BP during a 24 hr holter monitoring, showed it goes up to 179/138  when im active (active for me is when im just standing or walking to another room, i cant do much cause of the CFS.. and I was getting these readings when I was mentally very relaxed).  I havent got what is termed as high BP thou as my BP also goes down eg 80/51 at night.  It's really all over the place.

  No treatment for me has been mentioned and im concerned as I know the BP it's going up to is quite high.  I asked if this would cause me problems and got told no as it isnt really high BP due to the lowering at night.

  I have thou had 3 bouts of unconsciousness in past 6 mths, one one of these occassions my friend told me I was out cold.. for 3-5 mins.. which another doctor put down to my heart as I have many heart problems in my family.  On all the tests I had thou, no heart problem showed up but doctor still says it could be my heart as apparently unless I have an incident with a monitor on, many heart things dont show.

   So im now wondering if it's my BP going so high at times.. whether that would cause me to go unconsicous??????  I do suffer from dizziness at times.. but that is put down to the CFS.

Im going to go to my normal GP tomorrow and tell him what the specialist has said about me having SNS dysfunction.  I'd been telling my normal GP that I thought I had some kind of instability going on with my BP but wasnt in the past really believed, he just thought I had borderline high BP.  But the 24 hr holter test has now showed there is a problem there with SNS dysfunction.

Is this high BP which isnt really high BP dangerous?  

  

[patsy10]

People with CFS and have the nervous system dysfunction often get POTS(postural orthostatic tachycardia syndrome.  If you  stand up after sitting the BP can drop dramatically and the pulse rate goes up.  I have this.  Everytime I get up my BP drops to 70/50 or 60/40 and I feel woozy.  This could be what made you pass out.

[taniaaust1]

  I have had POTS in the past with the CFS.. but dont know if i still have the issue anymore.  as i dont get dizzy nowdays on standing from laying, i just get dizzy when ive been active. The times Ive passed out lately..havent been when Ive been going from sitting to standing but rather when Im just standing or it's hot or ive just been active etc . Doctor said it isnt normal to just pass out cause one cant handle heat.  (at times I dont even sweat)

POTS was what my CFS specialist expected to see.. but he said my type of sympathetic dysfunction was of such that he hadnt seen it before,due to the BP going high at times rather then like POTS, he is very surprised by the dysfunction manifesting like mine is

Im wanting to know if my BP going up so high, thou it dont stay up, is dangerous?

[patsy10]

I'm quite familiar with holter monitoring as i work for cardiologists.  I have never seen blood pressure monitored with holter monitoring, just the heart rate itself.  Are you sure the number you listed above (179/138) wasn't your range in heart rate?  It's still too high if the reading is heart rate but it's very high if it is high blood pressure and it would need to be treated.  Did your doctor put you on medicine?  What kind of doctor did you see?

[taniaaust1]

"I have never seen blood pressure monitored with holter monitoring, just the heart rate itself."

nods yeah, ive had one of those other ones, where only heart rate is monitored with one too.

This other one was one which automatically inflates, randomly at about half an hr intervals, day and night.. it takes the heart rate as well as the BP.  I was having that monitoring as I was part of a large scienctific study for CFS, which the two main states hopsitals over here were running.

    I actually joined the CFS study knowing that they would be doing the 24 hr monitoring.. as I already KNEW i had weird BP issues (from my nannas monitor, in mornings, i'd noticed i get weird/very high BP readings, along with missing heart beats sometimes etc.   My body was doing such weird things.. i would often fault my nannas monitor out)

  but no doctor was listening to me when I kept on telling them my BP was going all over the place weirdly cause of the CFS..and werent testing me so I couldnt prove it till now.

No im certain the number listed wasnt my heart rate.. my heart rate readings are recorded in a different column along side the BP readings with the time each one was done.  I also went to the head specialist at the hospital and queried it too.. he says those BP results are right and dont appear to be false readings for me

  (he went over all my readings and my records of exactly what i was doing when each reading occurred.  I had to keep in depth charts at the same time, of when i was sleeping, sitting and laying and doing activities).  And both very extreme readings..correspond to me being up and on my feet. (the only readings which were taken when I were!).

  The BP reading 176/138  (i posted 178 accidently before) was taken at 10.50 am, my heart right was 91 at the time.
  My earlier BP reading was 173/117  taken at 9.09 am  (i was actually standing, watching my sister make her sons bed at the time.. just calmly chatting about general stuff.. nothing stressful).  My heart rate then was 86 .

  

[taniaaust1]

patsy..
    How i knew i had POTS in the past (another thing my doctors werent listening to me about and wouldnt get me tested properly for).   Is that I almost faint or easily faint on tilt tables raising.  
  My chiropractor has got one and was shocked when she had to grab me as i couldnt stand, after she tilted that table from laying to standing with me on it.  After that incident, she never raised me on that table again.

I'd also read online that for POTS to be diagnosed.. ones heart rate goes up over 30 beats more on laying to standing.   The difference thou in my heart rate on laying to standing was way over the amount to be diagnosed with having POTS.. mine at times was going up an ridiculous amount eg 57 bpm, just from going to stand from lay. (the amount it would go up would vary, every time i tested this some times it was just within the POTS range and just 31beat increase.. i used to be in ambulance service, so know how to take pulse. and i was doing that).

As i said thou.. i dont now notice the POTS anymore so maybe i dont have that anymore??  (I havent had any POTS incidents in about 5 mths)  and just now have this other thing going on with my BP?

Im going to a newish GP of mine today and going to tell him what the specialist said about me having SNS dysfunction and see if he says anything about it all.  (He's one of the doctors who wasnt listening to me and wouldnt have me tested when i said i was having erratic BP)

thank you for your posts to me.. i just hope someone can tell me if what the SNS issue i have no is, dangerous or not.. needs treatment or not or whatever.
  

[taniaaust1]

oh and if someone can tell me if there is a precise name for this issue im currently having with the wide ranging BP... calling it "sympathetic nervous system dysfuction" as my specialist called it.. just seems rather broad.

[patsy10]

Best wishes to you.

[taniaaust1]

thanks

i forgot to answer a couple of the questions you asked

"No treatment for me has been mentioned and im concerned as I know the BP it's going up to is quite high."

by above, i meant that medication for the BP hasnt been prescribed.  That is one of the things im trying to find out.. if i should be on medication and need treatment for the BP range i have.  sorry if i wasnt clear.

the type of specialist i saw.. was a endocrine specialist at our main hospital.  He's also a CFS specialist.

  

  

[patsy10]

I think seeing a cardiologist would be a good idea.  They are very good with BP control.

[taniaaust1]

  Thanks.. i wasnt sure what kind of specialist i should be seeing for BP issue... neurologist if caused by SNS dysfunction or what.

I did see a cardiologist last year (as i had a couple of incidents were i got woken up in middle of night by my heart fluttering along with nausea with that).  And had a whole range of heart tests done due to that and the fact that on one side of my family almost everyone.. my mother included, has heart problems (heart attacks from age of 40+).. but the tests at that time showed nothing (they did normal kind of 24 hr heart rate monitoring, but without the BP being done as well, an echo, stress test etc were done).  My doctor put down my bouts of unconsicousness as possible heart problem still thou.

   On that occassion my exercise stress test was normal with the BP i guess (I cant remember now but I assume they would of taken my BP during the exercise stress test).

Doctors going to send me to neurologist again as i have new symptom since i had a couple of neurologists look at me last  (I was hospitalized, taken by ambulance, on that occassion as i had neuro symptoms eg uneven pupils, hyper-flexia of my leg reflexes,  light sensitivitypositive romberg test etc...neuro doctors ended up put it down to my CFS as they couldnt work it out).
   (A couple of weeks back, i had an attack of CFS post exertional shaking which is common for me..but on latest occassion, I got uncontrollable drooling with it and a headache immediately after this.  It's the first time the drooling thing has happened so doctors going to send me to neuro again).

[patsy10]

I sure hope you get an answer.  It sounds like your life is terribly affected by all this.  I also have the hyperreflexia.  One doctor told me that once they diagnose somebody with either fms/cfs then they tend to blame everything on that and stop looking for other causes.  From my experience, this is true.  When I see a new doctor I don't tell them I have been diagnosed with fms.  That way get a fair exam.  I just tell them my symptoms and go from there.