24hr BP monitor cannot get readings?

[evo123]

Hi guys,

I have had a 24 hr BP monitor on since this morning, it goes off at 20min intervals and throws the odd extra measurement reading in every so often.  The problem is it cannot get readings, it is only getting about 1 every hour or so.  As it can't get a reading its getting tighter......my arm feels like it's going to pop!!!!  The machine gives 2 different error codes.

Does anyone have an explanation why this happens?  I have suspected POTS (I had a positive tilt table..was severley ill for several months but have improved)

[AireScottie]

I had the same problem, only it was on all weekend.  Huge bruises afterward, and kept me awake all night long, so they never go a recording of how low it drops when I sleep.  Contact your doctor's office and give them the error codes.  It's possible the electrodes are not in the correct place or the equipment is malfunctioning.  In any case, the results are useless, so you'll have to go through it again (gah!).  Better to call them now, get it off, and reschedule.

[AireScottie]

Okay, in my defense, when I read your post on the forum, it said you had posted 3 hours ago.  It's a bit late now, isn't it?!?

[somemonkey]

Your bp is probably too low. Normal for us.

[evo123]

Thanks,

It only got a few readings some shown high bp, some low.  The last was 90/45 and hr 132 sitting.  My arm is in agony now though.  I have a lump in the fold of my arm and its so tender.  I don't want another of those on for that long.

[somemonkey]

Did you get a dx?

[evo123]

hiya, they will not give me a confirmed diagnosis of POTS until all other causes can be ruled out, it's still a process of elimination at the moment.  I did get a dx of POTS then a week later they found an adrenal tumour so my dx was disputed and it was classed as 'suspected'.  I believed the tumour to be causing my symptoms (as some can mimic POTS) but this is looking more unlikely at the moment.  I have been told so many things over the past few months.

I have a neurology app on the 18th then a cardiology app the beginning of sept, so hopefully I will have one soon.

[halbashes]

Good luck with your upcoming appointments!  So sorry I wasn't able to respond to this message earlier, but it seems that you've been given some good insight from our other members.

The lack of readings could be indicative of malfunctioning equipment, or extremely low blood pressure.  My blood pressure is frequently too low for an accurate read actually.  This isn't terribly uncommon for Dysautonomia patients.

I so hope your arm feels better soon!  If ever something like that happens again, absolutely call your doctor right away to see if something can be done about it.

[evo123]

thanks for the post.  I will post the results of this next week as I recieve them.

I hope you to are feeling better x

[evo123]

Had my app with the neurologist but he never had the bp results he said that my cardio has them and I will get them off him (sept).  He said that maybe they would have to get readings from my arteries if they couldn't get cuff readings!!  I don't fancy this though.

He also said that my cardiologist is going to be looking after me for the POTS (he does believe that this should be confirmed) - is this usual?  

I have also found out about a hospital in London, UK, that has an autonomic testing unit and that Prof. Chris Mathias consults there.  My GP said she will refer me there once she recieves information from my current consultants, but when I asked my Neuro he was hesitant.  He said that maybe down the line.  but, i am thinking nearer to now...i would like to know the extent of autonomic dysfunction I have and if possible the type of POTS I have in order to recieve the best medications for me.  

What are your thoughts on this?

[AireScottie]

Given my own experience, I would get evaluated as soon as you can.  My docs blew me off for years, and I just got worse and worse.  Turns out my dysautonomia (and POTS) is 100% neurological, a result of neuropathy.  Had I been evaluated years ago, the neuropathy would have been discovered, and the autoimmune disease responsible for the neuropathy would have been discovered.  In the end, the autoimmune could have been treated, and I would never have had such severe dysautonomia.

Now, your POTS may be from some other cause which won't get any worse, in which case it won't matter.  But do you really want to look back five years from now and find out you should have gotten tested because there was a treatable cause?

[AireScottie]

Forgot to ask: what did the neurologist have to say about the B12 deficiency and neuropathy as a cause for POTS?  

[evo123]

Hiya,

The neurologist did not really answer any of my questions, he was a really nice guy, but I think I was the only person who he had seen with POTS symptoms.  He said if he can help me and my cardiologist in the future then he would but that was it really.  He tested my ankle reflex's and sensations on the sole of my feet and said they were fine.  My B12 at the moment is 176, my folic acid levels are now within normal range.  I am at the moment though quite dizzy for most of the day and am experiencing 'deadness' of my left arm and leg - i've had this each evening for a couple of nights now - they just keep feeling heavy and numb...like i've been leaning on them funny, but I haven't!!!!

Do you know anything about wilsons disease?  I have blood results back and one shows copper levels in my blood are low and this can be indicative of wilsons.  I have also tested positive for Antiphospholipid syndrome, but I believe you can have false positives for this.  

My GP is willing to refer me to the autonomic testing unit I mentioned once she has recieved all my test results, so I am looking forward to this I just hope I don't have to wait to long :)

[AireScottie]

Don't know anything about Wilson's or Antiphospholipid, sorry!  Too bad about the neurologist, but it seems to be a relatively new thing to recognise that dysautonomia can be linked to neuropathy.  At least, most of my doctors never suspected a link.  Hope your GP gets you scheduled soon, and will read your other posts as I can.  Keep falling asleep today, which makes it hard to read :P

[evo123]

Bp monitor results:

Summary:

'Overall, does show controlled BP with no significant postural drop noted.  Physiological nocturnal dip was noted.'

64% valid measurements.  

'Most invalid errors secondary to erratic heart rate.  Nocturnal dipper.'


I am unsure of how it can state that my bp was not effected by posture when they have no way of knowing my position.  My bp fluctuated from

lowest value - 81/64 hr - 74,  
highest reading - 200/163 - hr - 78.  
Lowest heart rate 52bpm (bp 108/46),
highest hr 131bpm (bp 91/62).

There are many comments made upon 'erratic heartrate'.

There are a few extremely high readings being up to- 200/163,  192/162, 182/166

36% of the readings were unable to be read.

Is it normal for a persons bp to vary like this?  Does this look normal?

There is a note on this from cardiologist stating they feel there is no more cardiac investigations that can be done at present for my underlying condition.

[evo123]

one more thing I should have put with the above post.  I never have postural drops in bp I have bp increases.  My bp drops lowish when sitting/lying.  During Tilt table test aswell as a large hr increase I had a large bp increase.

[SurgiMenopause]

They may have based the no significant postural drops on the time during your hours of sleep time, where you got up to go to the bathroom (if you did) in the night or when you got up in the morning.

I don't understand why they would say: "'Overall, does show controlled BP ..." when you obviously have some runaway high numbers that are way out of control!  It is strange when you think of dysautonomia that on your highest BP numbers, the pulse is only 78!  It is not out of line with dysautonomia to see your heart rate climb to 131 when your BP was only 91/62, except I would hope that when your HR got that high that it would bring up your BP more than that.  

The following are excerpts from http://www.ndrf.org/orthostat.htm  (especially note the last part I quote):

"It is estimated that over 500,000 Americans are afflicted with Orthostatic Intolerance."

"Often, these conditions tend to be misdiagnosed as either a psychiatric or anxiety - related disorders, due to the nature of the symptoms."

"Standing upright results in a series of reflexive bodily responses, regulated by the Autonomic Nervous System, to compensate for the effect of gravity upon the distribution of blood. These conditions are a result of an inappropriate response to this change in body position."

"The normal response for a change in body position, results in a stabilization to the upright position in approximately sixty seconds. During this process, the normal change in heart rate would include an increase in heart rate of 10 to 15 beats per minute, and an increase in diastolic pressure of 10 mm Hg, with only a slight change in systolic pressure."

"For those who are afflicted with Orthostatic Intolerance, there is an excessive increase in heart rate upon standing, resulting in the cardiovascular system working harder to maintain blood pressure and blood flow to the brain."

"Upright posture also brings about a neurohumoral response, involving a change in the levels of vasopressin, renin, angiotensin and aldosterone levels - all of which are involved in the regulation of blood pressure."

"Additionally, arterial baroreceptors, particularly those in the carotid sinus area, play an important role in the regulation of blood pressure and the response to positional changes. As the heart pumps blood to the body, the left atrium is passively filled with blood as a result of the force exerted by venous blood pressure. The baroreceptors in the left atrium respond, proportionately, to the pressure exerted by this venous blood pressure. Thus, a drop in venous blood pressure will trigger a compensatory response to increase blood pressure."

"Any disruption in any of these processes, or their coordination, can result in an inappropriate response to an upright position, and can lead to a series of symptoms, and may include syncope."

The BP is normally something that can fluctuate a great deal throughout the day.  But, it DEFINITELY should NOT be going as high as some of those posted figures.

[evo123]

Hiya thanks for the info x

I totally agree for fluctuations of bp reaching 200/163 with a average hr is not fitting.

Could my heart rate, classed as erratic on the test results, effect the reading of bp?  What do you think they mean by erratic - they do not give specific details (hope this does not sound like a silly question......would this be postural changes do you think?)

I did not get up during the night, that has calmed down now :) x  

I have been really 'brain fogged' this week so i've not been on much - but today I have felt quite normal, the healthiest i have felt in many months :) x I don't want to go to bed.........who knows how I will feel tomorrow!!!!! x

[SurgiMenopause]

So glad you had a better day!  I would think erratic would probably take in the territory of the big upswings in heartrate you have.  I don't know if their comment also encompasses low heart rate number(s) that you had as well.