I have been really sick and in bed since the end of september. i have many symptoms, but one of the most alarming and confusing is this continuous flux in blood pressure readings. i am in the in-between stage of diagnosis at the moment. i can elaborate on test results if anyone is interested. what i wanted to ask is if anyone on this board has had my problem with blood pressure fluctuation.today i was seeing my nurse and when i first arrived they took my blood pressure, the reading was the highest i've ever seen it: 138/96 (i was having a strange headache at the time). because of this reading and my general feeling that my blood pressure is constantly low (and the fact that i've noticed my blood pressure go very low on several occasions on my home bp monitor), i asked her to check it again before i left and it was 90/69! i know that my normal (in the past) has been somewhere between 120/80-110/70. my average the last week or so has been 100/65 and i have had one or two readings that have been as low as 87/45. i also consistently have a high heart rate, it's normally over 100 bpm and goes as high as 166, but it has also been 82 bpm (awake), with the lowest being 56 (asleep).
anyone have any experience, knowledge advice about this? i have multiple ECG & EKG's and all of them are apparently normal.
Oh forgot to say I am on betablocker as also.had.tachycardia. Also before AD diagnosis lost a large amt of weight. I.have syncope episodes and presyncope most of.time. Can only stand for around 8 min before bp drops causing syncope. I also have ms. Even my drs r confused with labile bps.
You're not sure what causes it? How were you diagnosed with AD? How long did it take for your to get diagnosed and did you have the symptoms for a long time? I have gone down to 100 lbs. (I was around 112-115 lbs. this October). I have so many symptoms and so far the only things showing up in my blood work is a positive ANA test w/ two patterns and reactive for Epstein Barr Virus. I know the heart rate has been high for at least one year, but my old cardiologist told me not to worry about it. Just noticing the BP, because I wasn't that aware of taking readings before this fall. thanks for responding!
Oona, It took 2 yrs for a diagnosis of autonomic.dysfunction. I have neurocardiogenic syncope and Dr now says he thinks I have POTs and OI. I was sent to an electrophysilogist who diagnosed me. Turns out my neurologist who treats my ms had already diagnosed AD but hadn't bothered to tell me.
The electrophysilogist put me on a betablocker which helps with tachycardia but now my heartrate is very slow. Stays in the 40s and 50s mostly. I am also on 3 other rx for bp. Mine has been all over the place for years.
What I mean by I don't know what causes them is just that. Even the Dr doesn't know. They feel its from autonomic system malfunctioning and it pours out massive amts of adrenaline at inappropriate times.
Are they testing u for lupus maybe? My suggestion is see if u can be referred to an electrophysilogist for testing such as the tilt table test etc. This may tell u a lot.
Wish I was more helpful. All I can say is I understand. It's scary and frustrating.
Oona, Google postural tachycardia syndrome. I just read your journal and so many of your symptoms corresponds with this. I am not a Dr so just a thought.
U can form your own opinion once u read about it. Then u can take this information to your Dr.
I too have just read your journal input and you state ' heart rate 100 bpm lying down, 140 bpm upon standing'. Was this on a Tilt Table Test? If not I would ask that you have one done if the test results you are waiting for come back normal. It is good that your doctors are testing your hormones and adrenal glands as these can cause conditions with similiar symptoms.
Postural Orthostatic Tachycardia Syndrome (POTS) is diagnosed on a tilt table test when the patient has a heart rate increase of 30bpm on upright tilt (from laying to standing) or to 120bpm. Follow the links belo to our health pages here for informationon this:
evo123 is right on about the definitions and tilt table testing. Some people don't get that one for years so go undiagnosed that long. My dx is PAF and the tilt table test was insturmental in getting the autonomic dysfunction diagnosed.
That said I find now that I have very reactive BP. When I go into a doctor's office, especially a new one, or at other times my BP can shoot up to 200/150. Later on it can be as low as 74/55.I can't take Beta Blockers while on allergy shots but I am on verapamil now and that keeps the high fluctuations to more around 165/102. My best guess is I am having surges of adrenalin or some other neurotransmitter and my body then tries to compensate for them and undershoots. Eventually it comes out near normal. I worry about the highs as I have had some strokes.
The fluctuations are true for a lot of people on this forum as that is kind of the definition of autonomic dysfunction. The tilt table test is the one most have had that helps define all. There are more test at the autonomic testing centers but not everyone has been able to get tot one of them. Marie
I had this issue also along with other symptoms (lightheaded feeling, weakness, shaking and a feeling of near fainting, passed out 1 time). During 1 ER visit, the nurses were gathered around looking at my BP monitor in shock that my BP would drop then skyrocket. They tested for blood clots, etc. All clear... My diagnosis was Vasovagal Syncope, basically a malfunction related to the Vagus nerve. Could be something for you to look into... Good luck :-)
P.S. I was prescribed Celexa which has helped a lot.
I wanted to update everyone about this BP/ Heart rate issue. I saw another specialist today about the ongoing health issues that I've been having. He seemed to think that my condition could be related to deconditioning (i.e. because I've been in bed for so long, my heart gets a bit shocked at any exercise. I'm taking this advice with a grain of salt and will be seeing a cardiologist for an echocardiogram and loop monitor later this month. I'll actually get to discuss with him my results in February sometime.
The specialist we saw today seems to insist that what is happening with me is autoimmune (based on a positive ANA test titer: 1:160 speckled and homogeneous patterns).
My ENA panel came back negative (no antibodies for Lupus, Scleroderma, etc), but he said that that doesn't necessarily matter.
Thanks for the suggestions. I will continue to post as I learn more.
Your post was interesting to read. I have similar symptoms. I also have been struggling with what I believe are 2-3 possible Autonomic Dysfunctions. My BP is "extremely" labile. It is believed this has been caused by gradual deterioation of the Autonomic System (i.e., afferent baroreceptors) due to bilateral Aides Tonic Pupil that I have had for at least 3 decades. It's common for my blood pressure to be in the 50/35 range (from sitting or lying to standing with frequent "repeated swaying in the wind" to actual syncope) and to the 250/150 range (always within only a very few seconds). During my last recent doctor visit, my BP went from normal to 270/165 in less than 15 seconds. The skyrocketing is typical. It has actually gone to 300/185 in the ER, before going into a prolonged Grand Mal Seizure that led to shutting down all of my senses, including my ability to breathe, before collasping. I turned deep shades of blue (from lack of oxygen) and experienced swelling in my brain due to the high pressure in my brain. I knew nothing for the next several days in the hospital. My blood pressure "easily" rises in "seconds" well over 215. Likewise, it also falls in seconds from sitting or lying to standing. I have been to many specialists in many places.
I would like to compare symptoms and discuss if you have found any "real" help or a helpful doctor. Thanks.
It's interesting that you mentioned "large amounts of adrenaline". The nurse (at Vanderbilt) drew blood for lab evaluation, "during" a high BP surge (270/168 - from 110/80). The lab results showed that my norepinephrine (i.e. adrenalin) was more than 3 times the normal amount. In other words, the amount of adrenaline was extremely high, when my BP was surging "in seconds" like a rocket! For some reason, my brain sends a mixed signal which results in quickly "dumping" tons of adrenalin into my blood stream, which soars my blood pressure. I believe the more dumping of adrenalin, the hight BP soars (well over 200). By the way, I was (and had been) sitting during this time..no physical activity was involved.
For those of you participating in this site about AD, what have you experienced in regard to adrenalin dumping into the blood stream and BP surges? I'd love to hear from any of you who experience this.
Once my catecholamines were tested it was the nor epinephrine that was high. My other two catecholamines were not elevated. I always say nor epinephrine as that was what was specifically high. The three main catecholamines in the body are epinephrine (adrenaline), norepinephrine (noradrenaline) and dopamine and all come from phenylalanine and tyrosine. Both of the hormones epinephrine and norepinephrine are released from the adrenal medulla of the adrenal glands as part of the fight-or-flight response. It is important tho to differintiate which are elevated and not lump them together since different syndromes can have different ones elevated. Most people regulate their BP well using healthy baroreceptors and the pathways that lead up to them but either can be damaged and cause surges under fairly normal conditions. Often times failure in these areas can look like a pheochromocytoma and those need to be ruled out first. There is a great journal article called the Four Faces of Baroreceptor Failure that can be found on the web. You may want to start a new thread for this topic by posting a new question.... Marie
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