Scared. Need some help here: weird BP or adrenaline surges when lying or sitting and tired

[Midori]

Hello guys

 

I was diagnosed with POTS a few months ago but they think i've had it for much longer.  A supplement containing niacin set it off in late July and since then, while my standing tachycardia is coming down (was 140s now 1115-120s) I get these weird events that have landed me in the hospital a few times since Aug and I don't know what they are...but they really scare me when they happen.

With that very first reaction to niacin back in late July I have been getting these adrenaline type feelings. 

They are coming almost every two weeks.  All but the first happen when  I am either seated or lying down and when I am tired.  I get this feeling like my mind zones for a second (possibly subconsciously noticing something is off), followed by this odd sensation that something is rising- like an adrenaline rush but I'm not sure.  I have a hard time describing it but it's very scary. Usually it stops quickly but when i've gone into the ER it's because it kept coming back.

Here is what I've logged about them

 

1) The first one came on with the niacin reaction.  I was just standing and all the sudden it felt like something was VERY wrong.  Possibly a blood pressure thing and I screamed for my husband to call 911.

2) That night and the next day I got this same feeling to a lesser extent but it kept starting up over and over and I went into the hospital. Gave me an IV and I stabilized.  each time it comes on my body screams 911. it feels like something is very wrong.

3) Another one a month later.  This time I took my blood pressure. It was 155/125 then dropped to 67/37.  I went to the ER. My potassium was a touch low (3.2) so they gave me some potassium supplements.

4) I got another one 2 weeks later, slammed two coconut waters and felt better in 30 minutes.

5) Another one today.

 

 

Anyone have this?  I went to electrologist. she did an echo but said it was fine and said whatever is going on is neurological (hence the dysautonomia I guess)

 

Any help is SO so appreciative.  I'm so worried this is something really grave and it could get worse but not before i figure out what it is.

[Bluebonnet08]

I'm so sorry that you are going through this.  Online you can google "the poor man's tilt table test" and do a little test at home to see if your HR/BP increases while standing.

Three things that have helped me:

1.  Increasing ferritin levels to 80+

2.  Regular IVs keep the attacks down

3.  Low carb/low sugar/no caffeine

 

Hope you start to feeling better soon.

[WinterSown]

2 hours ago, Midori said:

 This time I took my blood pressure. It was 155/125 then dropped to 67/37. 

I do this several times a day. Over the past few months my EP has dropped me off of most of my BP meds, the last now is only on a low dose of carvedilol twice a day. I get Drop Attacks--I faint and remain conscious. Because of a brilliant PT doctor I no longer drop and am strong enough to withstand the BP drop; I still get my daily dose of drops but I don't collapse anymore. The set of numbers are sometimes hard to capture because the bounce back can be just as sudden as the drop. Pay attention to your gut reactions. If you feel the urge to go lay down do go lay down--better to not fight it and smash your face until you are strong enough to stand through them. 

I"ve found I'm more stable, literally, when I pay attention to my foods and focus on eating ones with high electrolyte counts. I drink a lot of water and when the weather is cool I can wear compression socks. If I wear them in the summer I overheat and get swoony and it's back to square one.  I also try to avoid sensory overload which is one of my worst triggers, we shop during slow times and eat in quiet non-crowded restaurants, we go to tiny museums, etc. By limiting the overload I have a lot less attacks. Feel better soon!

 

 

 

[MomtoGiuliana]

The things bluebonnet listed also help me!

[Midori]

2 hours ago, Bluebonnet08 said:

I'm so sorry that you are going through this.  Online you can google "the poor man's tilt table test" and do a little test at home to see if your HR/BP increases while standing.

Three things that have helped me:

1.  Increasing ferritin levels to 80+

2.  Regular IVs keep the attacks down

3.  Low carb/low sugar/no caffeine

 

Hope you start to feeling better soon.

THanks for your reply.  I think those IVs may be a great idea.  How can I get my doctors to do this?  I also think I need to check my ferritin levels. I see a hematologist soon and I will ask her to run some tests.  In the past they have been ok but my b12 is always on the borderline low side.  RBC always slightly under but red blood cell shape and size normal.

As for diet I eat no potatoes, pasta, bread, wheat flour, barely any sugar and zero caffeine.  And I only have one glass of wine..if that, a week. 

[Iheartfrogs217]

Hi Midori, I am so sorry to hear you are going through this. If you find out what is happening please let me know! I have quite similar symptoms and can understand the fear you experience with it.  I hope they find what is happening and you get better soon!

[StayAtHomeMom]

You said you have POTS, have they tested you for HyperPOTS or other dysautonomias?

[Midori]

no not yet.  I tried to get into doctors in my local but booked until next year

 

[StayAtHomeMom]

16 hours ago, Midori said:

no not yet.  I tried to get into doctors in my local but booked until next year

 

Another option while you are waiting could be to bring the possible tests to be run to your regular doctor and see if they are willing to run them. 

[Pistol]

That is what I am doing right now with my daughter. She has been passing out and having tachycardia. I called my specialist and askes what tests they recommend and my PCP ordered them ( she is on a 30 day halter right now and will have the TTT done after that ). Then she can go see my specialist once the tests are done and does not have to wait that long. Especially since it is an 8 hour drive plus her insurance does not cover out-of-state doctors. That way we only have to go once.