Weird BP experience, stumped neuro

[MTRJ75]

As most doctor's offices usually do when they take you into the exam room, they took my BP initially and it was actually lower than expected (112/74). 

Doctor comes in and does his normal check up and wants to check pulse/BP lying, sitting standing. So I lie down and he sends in the assistant five minutes later. He takes it twice while lying down just to make sure it's right. My BP is generally low when lying down. 

I sit for a few minutes. He takes it again. Twice. 

Same thing standing up. 

Then the neuro returns and takes it again after I was sitting for a few minutes. 

Each of those readings were 150-160/100-110

Nobody understands when it was so normal about 20 minutes earlier. He tells me to check it a few hours after I get home and am relaxed. 

I check it as soon as I get home, a half hour later AND a few hours later. All 3 readings in the 120s/80s range. Perfectly normal if maybe very slightly elevated. 

The frustrating part of all these visits is that whatever I throw at him, he generally agrees, but then says there's nothing we can do about it. 

- SFN damage causing the blood to shunt away from muscles, exacerbating symptoms upon exertion? Sure, but there's nothing we can do. 

- The latest research showing and even isolating different antibodies in autonomic dysfunction/fibro/CFS? Maybe, but we can't do anything about that yet. 

[Pistol]

@MTRJ75 I too have labile BP with similar extreme fluctuations, and as with you these were taken in medical offices often. Some types of POTS can cause them. Whenever I am in a hospital and they take my BP while lying down it is usually on the low side but increases when I sit or stand up. Maybe it is the same in your case?

[MikeO]

My bp's are also very labile. Office numbers are alway higher than what my home ones are. Could be just being white coated?

[Pistol]

49 minutes ago, MikeO said:

Could be just being white coated?

Mike, I used to think the same thing! My PCP and I used to make that joke. Thing is it happens even when NOT in a Dr office! even in my home when the home health nurse ( who takes care of my infusion port ) takes my BP it fluctuates like that. I think it is simply a dysautonomia thing, at least in my case. 

[MTRJ75]

6 hours ago, Pistol said:

@MTRJ75 I too have labile BP with similar extreme fluctuations, and as with you these were taken in medical offices often. Some types of POTS can cause them. Whenever I am in a hospital and they take my BP while lying down it is usually on the low side but increases when I sit or stand up. Maybe it is the same in your case?

That's what USUALLY happens. This was just randomly blasting high for a short period in all manner of measurement. 

[MikeO]

2 hours ago, Pistol said:

Mike, I used to think the same thing! My PCP and I used to make that joke. Thing is it happens even when NOT in a Dr office! even in my home when the home health nurse ( who takes care of my infusion port ) takes my BP it fluctuates like that. I think it is simply a dysautonomia thing, at least in my case. 

I have been dealing with the labile bp's for years. Yes at first my cardiology did cite white coat but my care team does now recognize the labile bp swings and dysautonomia. This has been well documented. 20 point swing in bp is normal my 171/105 down to 105/60 is not.

I am sure this is a dysautonomia/other issue. I have posted my bp's here before and are somewhat ugly. I did message my care team with my latest numbers for now i need to watch my carb intake.   

[Sushi]

I also have these swings and am very often high in a doctor’s office. For me, yes some level of white coat syndrome, but also, I always drive myself to appointments through city traffic and have a caffeinated drink before driving to help with concentration. I think both the stress of driving and the caffeine play a role. 

[TCP]

My BP has been up and down for years. It can fluctuate several times per day or be specifically low/high for days/weeks/months on end. 

[MTRJ75]

I've gone the functional route before. None of the expensive treatments and/or supplements held or were affordable over the span of time it would take, especially now that food costs a fortune. 

I'm not concerned about the BP thing. It went right back to normal and has been every time I've checked since. Just thought it was another one of those weird things. 

The more interesting thing to me (and this could even be a cause of the chaotic BP, who knows?) is the theory that SFN damage is causing blood to shunted away from the muscles. If the body is attacking itself, damaging these, nerves, sending the wrong signals, how can we stop it and perhaps recover? 

My neuro says that I've regained more functionality than a lot of people, which I'm appreciative of, but I'm also apt to be living in a cardboard box at some point if I can't regain more. 

[MikeO]

42 minutes ago, MTRJ75 said:

I've gone the functional route before. None of the expensive treatments and/or supplements held or were affordable over the span of time it would take, especially now that food costs a fortune. 

I'm not concerned about the BP thing. It went right back to normal and has been every time I've checked since. Just thought it was another one of those weird things. 

The more interesting thing to me (and this could even be a cause of the chaotic BP, who knows?) is the theory that SFN damage is causing blood to shunted away from the muscles. If the body is attacking itself, damaging these, nerves, sending the wrong signals, how can we stop it and perhaps recover? 

My neuro says that I've regained more functionality than a lot of people, which I'm appreciative of, but I'm also apt to be living in a cardboard box at some point if I can't regain more. 

Might want to look in other things than a neuro issue. I could easily blame dysautonomia on my bp liable issues (and just live with it) but that is not a good explanation (root cause).

is the is the theory that SFN damage is causing blood to shunted away from the muscles. If the body is attacking itself, damaging these, nerves, sending the wrong signals, how can we stop it and perhaps recover? Diabetes will just do this just to name a immune issue.   

[MTRJ75]

I have Sjogren's (an AI condition), but do not show up in blood work. A lot of people with AI conditions don't. There are now questions about if many forms of dysautonomia are autoimmune. 

[MikeO]

Are you seeing a rheumatologist for the Sjogren's? I believe one of the drugs to treat the syndrome is Hydroxychloroquine (Plaquenil).

[MTRJ75]

No. I've been to two Rheumys who won't treat me because of the clean bloodwork. I've refused the lip biopsy because a few doctors who do them told me that they're not entirely without complications. I know of one case gone wrong that resulted in nerve damage and consistent pain. No other doctor wants to prescribe Plaquenil for me either. 

[MikeO]

4 hours ago, MTRJ75 said:

I've refused the lip biopsy because a few doctors who do them told me that they're not entirely without complications. I know of one case gone wrong that resulted in nerve damage and consistent pain.

Yeah bit my lip the other day. Sure i will have complications and pain.