Strange BP readings

[DizzyGirls]

Hi all!   Hoping to get some suggestions from you all before I talk to my daughter's neurologist tomorrow.  She's been having trouble staying conscious in the late afternoon through evening/night.  I took her bp readings today and found that her bp was 92/52, heart rate 101.  No wonder she was passing out, but why was this happening?  So, she sat up and we took it again.  This time it jumped to 109/84, heart rate 109.  Heart rate was just a little above her normal (high 90's).  She was also more alert with her pressure higher.  She's also been feeling like her whole body is racing.  It comes on when her bp drops like that.  Makes her feel like she's coming out of her skin.  Also feels like something is squeezing or putting pressure on her heart.  All of this happens at the same time.  Can anybody shed a little light on these symptoms?  In addition to all of this, she is pretty sure that she's developed pseudotumor cerebri again.  It means another lumbar puncture to release some fluid. 

[Pistol]

Hi - I go through swings in BP - both high and low. Both come with different symptoms. The pressure on her heart may be from the low BP - causing her heart to pump stronger to bring up the BP.  I also feel the body-racing sensation - in my case it is a part of pre-syncope. 

[Guest KiminOrlando]

She is on florinef, right? Is she not a candidate for Northera? What does her norepinephrine look like?

[StayAtHomeMom]

12 hours ago, DizzyGirls said:

In addition to all of this, she is pretty sure that she's developed pseudotumor cerebri again.  It means another lumbar puncture to release some fluid. 

I have a friend of mine that has this as well as her daughter. It kind of sounds like when you get her a lumbar puncture they are able to relieve the pressure and her symptoms go away? My friend makes it sound like the condition is permanent. 

[dizzytizzy]

What are her symptoms for the idiopathic intracranial hypertension? Does it tend to correspond to the wonky BPs?

My BP tends to run lowish - 90s/60s - but when I have drops in it, my already waning energy really drops off. Is she having dizzy or lightheaded spells when it drops?

Edited August 7, 2018 by dizzytizzy
fix autocorrect error

[DizzyGirls]

Hi all!  Thanks for all of your responses!  So it sounds like from what several of you have said, that this racing feeling, low bp, syncope, and heart spasms (?) have to do with her POTS.  Kind of thought so, but the heart thing and racing feeling was making me nervous.  Makes sense, though, why she doesn't come around easily when she passes out, her blood pressure is too low.  Yes, she is on Florinef, but it seems to be wearing off about mid day.  I tried upping her dose, but it was making the pseudotumor cerebri a lot worse.  Head felt like it was going to split in two.  Too much pressure.  She hasn't had her norepinephrine levels checked at all.  Is that a blood test?  When about 4:00 p.m. rolls around, she starts getting really lightheaded and dizzy.  Now I know that it's when her bp drops.  Not sure why.  I am still wondering if all this POTS stuff is still related to her untreated Hashimoto's (working on that) and the pseudotumor is separate.  About once a year she has to have some of her spinal fluid drained off and it helps.  Some people are able to take Diamox to keep that from happening, but it is a diuretic so, guess what happens??  She passes out every time she stands up!  So, sounds like we are stuck with the lumbar punctures.  Not sure if the condition is permanent.  Probably depends on what's causing it.  The neurologist is sending over a referral as we speak to the hospital to have the LP done.  

dizzytizzy  - symptoms for idiopathic intracranial hypertension are:  headaches, migraines (especially while standing, relieved some by laying down), vertigo, a ton of pressure in her head and neck.

[StayAtHomeMom]

My friend keeps her hair short or shaved. She says that helps. Also she has inflammation in her eyes. Has that been checked out for your daughter? Since your daughter has the hashi's see if they would be willing to do a cortisol test as well and see if that could cause her to run out of steam. Your daughter is going through so much. She is definitely one strong woman!! I am cheering for her. 

[dizzytizzy]

@DizzyGirls: Thanks for detailing out the IIH symptoms. I tend to get a lot of intense, uncomfortable head pressure when lying down too, so you've given me something to bring up to my doctors!

I also wanted to say that the "racing" feeling she has...is it more like internal trembling? Like she's running on pure adrenaline? I get that often and my EP said it was due to transient drops in BP as well as probably high amounts of norepinephrine in the body. Never had an actual blood test to confirm it though, so who knows. 

[DizzyGirls]

dizzytizzy - Yes!  The racing you describe is exactly what she's feeling.  Think she better get that norepinephrine test that you and a couple of others have described.  Hope your head gets better, too!

[Pistol]

@DizzyGirls - yes, Norepinephrine is a blood test. I had it done by Dr Grubb and he had to send it to California or Colorado ( some C-state ). The problem is I believe only major hospitals do that test and she has to have it done lying down half an hour and then after walking for half an hour. From what you say she is not able to be upright that long? If she gets it done lying down it's probably going to be normal, it shoots up when upright. So if she cannot stand that long she probably will not be able to get it done. 

[DizzyGirls]

Thanks!  I'll look into it. We live in California, so have several major universities that we go to. 

[Guest KiminOrlando]

They should be able to get it for her, but she will likely faint during the test. They made me stand while they monitored me, like a poor man's TTT. Right before I passed out, they drew the blood. If you pass out before the blood is drawn, the body resets norepinephrine levels and the test is invalidated. They knew when to draw because my BP was 42 over nothing detectable (for me) and I told them I'm going to faint. People were holding me up to complete the draw and I woke up in the bed behind me, but they got it. Your daughter's BP will likely do something similar and they will draw when her numbers get ridiculously low. Many of the hospitals that you go to should be able to do it. Stanford should be the gold standard in your area. Many places think they know how to do it, but mess it up by allowing the patient to faint. Some meds also alter norepinephrine levels, so that needs to be taken in to consideration. My first draw showed I was 'fine', but I fainted and was on one of those meds. My second draw showed my norepinephrine was low and altered my course of treatment. It changed my life for the better. 

To be honest, I'm surprised that they haven't done this already. Hope you get some answers.

Have they looked at a syrinx around the brainstem or is that what you are talking about? Can they put in some kind of shunt?