Orthostatic Hypertension

[thegron]

Hey y'all,

Those who have orthostatic HYPERtension: would you mind explaining to me what your symptoms and signs feel/look like?

[sue1234]

I was diagnosed as having "hyperadrenergic POTS" based on my orthostatic hypertension(170/110). My heart rate goes up along with my blood pressure.

What happens with me is my heart rate starts to pick up. After a certain amount of time, I get pooling in my hands and feet. I can literally feel them swelling without looking at them. Then, I get a real hot flush that comes over me. In this very late stage, my head begins to feel pressurized and funny. I believe my adrenaline is kicking in at that point to help "squeeze" the blood back upwards. At this point also, my upper abdomen feels like the blood is pooling there, also. This causes me pressure on my lungs(???) and I begin getting short of breath.

To prevent the excessive reaction, as soon as I notice my hands and feet have swollen too much, I know it is time to sit and prop my feet up.

On a TTT, this reaction happens faster and more pronounced. If just upright in everyday life, I have more upright time as I make sure and move when I am upright. I don't do well at all standing in one spot.

[kayjay]

I was diagnosed with hyper pots by Mayo clinic. They diagnose based on NE levels. I do ocassionally have adrenal surges (more frequently when I'm in bad shape). It seems that suges happen with many "regular" pots patients too. If your Bp gets low it makes sense that your adrenalin will kick in.

My excessive adrenalin is not stricly episodic. It was high all of the time- or so I assume because every 24 hour urine collection I took indicated an adrenal tumor.

My symptoms of hyper pots before treatment did include bouts of high blood pressure at times. Sometimes it was normal. I also was very sweaty and hyper. I barely slept for years. I had trouble fall asleep and staying asleep.

Interestly (to me) and possibly related- I need large amounts of anesthesia for sugery. I've had 3 surgeries with pots and each doctor found it amusing that it took so much anesthesia to knock me out. Most recently I tried to get off of the table in the operating room to use the bathroom. I am a female and not particularly heavy. I only made this assumption recently because I am sensitive to medication- just not sedatives.

For me hyper pots made me feel amped up- at this point I've been diagnosed with chronic fatigue but I used to feel as if I was was super caffeinated. My hands would shake terribly and I would try to cover it up by telling people "I need to stop drinking coffee"... It was embarrassing. Now I look back and think "it was the adrenalin.

I'm mentally a pretty steady person (I think) it's hard to describe but I felt physically "amped" without the expected mental element.

I also felt like I had to urinate all of the time. I could ignore it at work but I would get up 10-20 times at night- usually I wouldn't actually pee. Beta blockers have been the most helpful.

I sweated a lot- almost all of the time. My bed sheets were soaked at night. They may have been like "hot flashes" but they started in my 20's and were in the absence of hormonal problems, fever, or infection. I wasn't even really hot or cold. I was just sweaty.

I'm also not sure if its relevant but a heart rate of 120 isn't very high for me. I've said this before, but I was 190 just brushing my teeth. My Orthostatic tachycardia was robust! I was also exercising and fit so my resting heart rate was quite low. I just recently looked at a tilt table result. My hr increase about 100 bpm.

I hope this makes sense. This is just my experience. Beta blockers have really helped decrease my excess of adrenalin.

[kayjay]

Also I think my metabolism was really high- I believe at some point I developed a problem with gluten but even with that aside I had a really hard time gaining weight. I had to work hard to gain when I was expecting both of my child and I was in normal clothing a week after my first was born- my second it may have been 2 or 3 weeks. It was not healthy but I couldn't help it.

My husband and I consumed disgusting amounts of food. a cheese cake didn't last 24 hours in our house. I think some of my high metabolism may have been related to Adrenalin. Looking back I'm pretty sure it wasn't normal

[Joann]

High bp. Episodes where I would feel awful pressure and tightness below my sternum. It would then hurt on the back of the neck, side of face, left arm. When it go really bad my head would feel like it was being pumped up with a bicycle pump and explode. My entire body would get tight and sweaty, I would feel sick to my stomach. BP would go crazy high. After episodes I would have to go to the bathroom, be shivery and sometimes body would shake/tremble uncontrollable and be exhausted, kind of like the feeling you have from mono.

In between these episodes I was having terrible trouble eating, sleeping, pretty much everything. Ugh...

[kayjay]

Joann- I forgot about the migraine like high Bp headache. I had headaches for years. It was so odd to realize one day "my head doesn't hurt".

[thegron]

Thanks for the replies. Hyper POTS does not sound fun!