Newbie here - HR and BP fluctuations

[Lynnylouwho]

Hi - 

I am a newbie here on the forum and newly diagnosed.. I am a lucky one that got a quick diagnosis from my doctors.. Have Bechet's disease in remission now and know what it is like, however, to go thru all the agony of finding a diagnosis from a condition with weird symptoms.

 Right now they are trying to find the cause.. first ruling out an adrenal tumor and some brain and spinal cord stuff.. What is puzzling is that I do not have the orthostatic positional changes.  When I stand up.. My BP will either stay the same or go sky high.. same with my heart rate.  However I can be laying down and my heart rate can vary between 35 BPM to 213.  .. for seemingly no reason..

Eating is a real challenge.. not the food, just the act of eating. It will cause light headedness to the point of lying down and then it is crash and burn.  So I am trying very small meals through out the day today.. I have lost almost 10 pounds in the last month (since a discharge from the hospital) and I am thin already..   So ..this all seems rather normal for dysautonomia (is there really a normal for this?  just kidding..)  I am being sent to Johns Hopkins for a complete autonomic workup.  

They are waiting for all the testing to be done while I wait for a treatment plan.. here is my question:  the huge fluctuations in my heart rate and blood pressure (sometimes as high at 210/110) .. does anyone else have that.. and should I be worried.. It seems like that would be very hard on my body.. I am not asking medical advice.. just looking for some validation of others who experience these  same huge fluctuations..   Thanks for having this forum and all this information..  

[MomtoGiuliana]

Welcome to the forum!

I experience BP fluctuations--I can have low or high bp on standing (along with increased HR).  But I don't remember ever recording a BP as high as you note.   Is that a reading you are getting at home?  Sometimes the home bp devices are not so accurate in my experience. I can relate to the issue with eating.  When my POTS was severe I also had to eat multiple small meals a day.  I could be disabled by a large meal.  I found eating more protein and more salt and fluid with meals also helped.  (However if you are experiencing high BP salt may or may not be a good idea.)

Good you are getting a more thorough work up with specialists.

[Lynnylouwho]

Thanks.. the BP has been documented at the doctor's offices and the hospital..   Thanks for the meal thoughts.. I have started to eat the small meals too with higher protein.  I haven't done the salt thing yet.. simply because of the BP and that they are still working on the cause.. So I will just let the doc's do their thing and then we can figure out where to go from there.. but gosh. it is a long haul..  Thanks for creating this space..

 

[statesof]

Hi Lynn, glad you are going to Johns Hopkins to get things checked out. I think one of the difficult things I have found is that my body often does not make sense; my heart rate can be extremely variable if I am anxious (think 105-110 while lying down), but overall my vitals don't typically correlate to how I am feeling. So on a day that I feel awful my vitals may be normal, and typically for me my bp is always around the normal range but my heart rate is quite variable to standing up, physical activity, anxiety, and stress.

[Lynnylouwho]

Thanks, Statesof... That makes me feel better.  It seems that nothing ever correlates to anything.. When I am laying down the HR will skyrocket and then dump.. BP is the same.. Sometimes I feel palpitations and other times not.. but usually when it started fluctuating wildly,  I do feel like something has creedped inside my body and taken over.. WOW.. So I got my brain scans done today. MRI with and withou.. and MRV.. Some white matter found on the MRI and some possible juglular stuff on the MRV.. but it looked rather mild.  I wonder how long it takes to have JHU to have an open date for an appointment.. I am told it will be two days of testing.. I don't care.. We will get a hotel and if I feel good, we can find some good crab cakes in Maryland to eat.  Thanks for the contact here.. it is so nice not to feel alone..   

[Catnap]

I'm really interested to read this thread. I went to a cardiologist wondering if I had POTS as after years of intermittent dizziness /lightheaded I noticed that my HR was going up a lot when I stood up. Sometimes it was sustained past +30bpm for 10 minutes but often it dropped back to normal. Cardiologist diagnosed me as mild dysautonomia and mild mitral valve prolapse. I passed my stress test. He suggested I start back at exercise, but go lightly so I bought myself a pulse watch thing. And a proper BP monitor. It's been illuminating!! Now I'm realising that my HR randomly goes high for no reason. Like up to 100 when lying down and can be 70 standing still. My Bp averages about 95/60, at times it's up to 130 but I think diastolic is always 60 or lower. My BP at doctors is always normal but my cardiologist did say that I could just be getting anxious at appointments. So it's likely I have low BP and totally random HR??? Is that dysautonomia or something else??? I had a low of 38bpm on my holter but otherwise nothing too worrying. I noticed my hr went down 45 standing up the other day. I'm not wearing now as it's freaking me out!!!

[kalamazoo]

Could it be dysautonomia, yeah for sure. We aren't doctors but i can tell you a lot of people on this site don't just experience high hr standing. I have high hr all the time that's worsened by almost anything. But i have hyper pots. You should probably see a dysautonomia doctor because a lot of other issues go with dysautonomia, check our the list in the forum section and see if you have any of the other ones because pots usually affects a lot of systems in your body. Small issues you might not expect it to. My heart rate ranges from 60-120 resting no matter what i do.