Mack's Mom (or Anyone Else) Low Bp Question

[Resting]

I have not been diagnosed with dysautonomia/POTS at this time. I do have auto-immune thyroiditis, auto-immune oophoritis (ovaries), and the cardiologist thinks I have some other auto-immune or endocrine problem. I went to the cardiologist a few weeks ago because of bp issues. I've always been 120/80 at the doctor's office (I'm very nervous at all appoinments). I did lose about 45 pounds in the past 1 1/2 years and my bp dropped a bit after that. When I started seeing an endo for my thyroid, my diastolic was always high (90-92) in his office. So, I decided that I would get a home machine and try to keep track of it. I was very surprised to see that it was almost always low at home (90-100/55-70). Part of the problem is that I feel like I don't really know what my "normal" is becasue I've never tracked it before.

The cardiologist, who I had seen two years ago for a full workup (including a cath) didn't seem concerned about my bp. This morning my bp was 81/65, which is the lowest I've ever seen it. I'm getting worried about it. I'm afraid I'll just drop dead!

Julie, I saw in your answer to another post that your bp goes low when you're seated. That's when mine does it as well. I thought that POTS/dys meant that it dropped when you are standing? I am going to see a rheumatologist (as a starting point) on April 25. How worried should I be about the bp?

As an aside, I did have a bad case of the flu last week that still has me feeling a bit weak.

Any advice would be greatly appreciated!

Cindy

[flop]

Hi Cindy,

getting to know your own "normal" BP is a good idea but it can be a bit alarming to read your numbers at first.

Your home BP readings are on the low side - BUT the most important thing is how you feel when your BP is low. If you feel well then there is no need to worry, people don't drop dead from low BP. However if you feel dizzy or lightheaded with low BP then you need to discuss it with your doctor to try to get rid of the symptoms. For some people drinking lots of water and taking a high-salt diet is enough to keep them feeling well.

In POTS the criteria to be diagnosed is totally based on your heart rate, some POTS patients have low BP, some have normal, some have high and quite a lot of us have BP readings that swing about all over the place.

Have you tried lying down for a few minutes then checking your BP whilst lying, then sit up and wait 5 mins - take your BP again, then stand up and wait 5 mins before checking your BP again (this is one way of doing lying/sitting/standing BP recordings). If you note your heart rate and pulse as above a few times and it shows changes in HR or BP (or both) then it would be very useful information to take to your doctors.

Flop

[sarct]

81/65 is usually right around my normal. A lot of times it is even 70's/50's-40's

I plan on getting a BP monitor to test at home to see if there are any patterns that could tell me about my episodes. I have always been a low BP patient.

Even when I was 150lbs almost overweight it was still only around 100/75.

I am not sure what my diagnoses is yet. i am just told so far that I have orthostatic hypotension. I am still new to all this, but I have been reading a lot and am amazed at the symptoms that could be related that I never even took notice of before. Like the speaking thing. I never thought that had anythign to do with this. I just thought I was a lazy talker. Who knew??

[corina]

cindy,

for me 81/65 wouldn't be something to worry about. i think cardio's in general are much happier with these low numbers than with the higher ones. i think, that when you feel okay, this number could be fine for you. when you worry about it (feel very dizzy/spinning, having headaches, tiredness, raising hr), you should talk about it with your doctor.

take care,

corina

[Resting]

Thank you for your replies everyone. I do have some feelings of lightheadedness (no spinning) and tiredness. I do have hormone imbalances, which I know can make you feel that way as well. It's just frustrating to see lots of doctors hoping for some help and not getting it. I have a lot of anxiety/panic, and it almost seems that my bp goes low when I get stressed out (except for at the doctor's office!). Also, my resting heart rate is usually between 70-80. It doesn't seem to take much to make it go up, and it is often in the 105-120 range.

I assume that the Cardiologist didn't feel it was an actual heart issue since he didn't do anything about it. I am sending him a letter today asking about the possibility of some form of dysautonomia.

Best wishes to you all and I hope you have a great day!

Cindy

[juliegee]

Hi Cindy,

You and I have very similiar BP issues! Mine is usually around 90/60 when I'm at home sitting down. It's a bit higher, 95/75 when I stand. I've taken it lying down (when I feel pukey) and it's around 75/45. Mine has also been high at the doc's (140/90)- go figure. Must be white coat syndrome ;-) Nurses are often unable to get any BP on me. It usually takes a few tries. These are just my normals. Sounds like you're figuring your normals out. Don't panic at the variation. Just a weird part of dsyautonomia. It's VERY unlikely that your BP will just drop to nothing and if it does, lying down will quickly restore blood to your brain.

I think Flops helped clarify for you that POTS technically refers to HR, not BP. I think a 28-30 BPM jump from lying down to standing w/i the first 10 minutes is the technical definition of POTS. I've never done a formal TTT. (I'm too afraid.) But, I've had informal TTT's done in the hospital and at my doctor's office and my HR definately jumps up after standing & my BP tends to bottom out after standing. Once it dropped to an immeasurable number after only 3 minutes of standing. This is refered to as Neurocardiogenic Syncope (NCS) or Nuerally mediated Hypotension (NMH). Many of us have a dual DX of both POTS and NCS/NMH.

My son has NCS/NMH and he also felt a lot of anxiety before his BP actually took the big plunge. On his formal TTT at Johns Hopkins, his BP didn't nosedive until 35 minutes of standing. At that point, he vomited and fainted. Among many other symptoms, my son was exhibiting quite a bit of anxiety during this period. This was VERY out of character for him. He was also quite lightheaded during this period, but not actually fainting, as he was able to instictively sit or lie down before his BP dropped. (I think I've done this my whole life- thought it was normal) His pediatrician, Dr. Peter Rowe, pointed out that many patients feel extreme anxiiety before their BP plunges. It's almost as though the patient innately understands that something "bad" is about to happen and kicks out crazy amounts of adrenalin in order to fight it. Dr. Rowe was very careful to point out to my son that his anxiety was NOT an emotional weakness. A very real psychiological phenomenon was causing it. The same thing may be happening to you, Cindy. I'm guessing that you should have a TTT with an electropsychiologist (EP) who regularly DXes POTS, NCS, NMH- easy for a chicken like me to say:-) As part of his treatment for NCS/NMH, my son takes an antidepressant, along with the florinef, salt, and extra fluids, it totally takes his anxiety away and he feels pretty normal.

Yor body is just like an automobile. When the pressure's low (Low BP), the engine has to rev up (High HR) to compensate. Sorry to be so long-winded! Don't freak out over your BP variations, but do report them to an EP and consider a TTT.

Julie