Hyperadrenic pots high Blood pressure

[Hope2001]

I have hyperadrenic pots and have problems with high bp. Bp on laying is good 126/70-76. Sitting 144/94-114. Spikes even higher. I do not tolerate most of meds. Tried bp meds not good. Bisoprolol made depression. I got atenolol to try. It should not have as strong depression effect.

During menstruation my bp spikes. Is this common? What have helped you with bp problems? 

[MomtoGiuliana]

This is similar to what I experience when in a flare up.  And it also happened to me during pregnancy and post partum (when I finally got a correct diagnosis).

Beta blocker, compression, fluids and salt have helped me the most.  Salt may sound counter intuitive, but my BP drops to normal or lowish if I am well hydrated and have had adequate salt intake.

[MaineDoug]

I have a lot of BP issues. All directly correlate with position and attempts at activity, even mental. My BP flat and calm, hydrated and salted, is great, 114/70, HR 55, but seated 140/85, HR 75, standing is weird, often initially hypotensive 80/40, 50, then after standing for several minutes or walking and exerting numbers are terrible, up to 200/110, HR 185, requiring immediate flat, legs up, and meditating. With these techniques I can get down to 120/75, 60 within minutes! Flares make my vitals more unstable, and once triggered it’s hard to get it back down. During the hypertensive episodes I am also symptomatic, headaches, chest pain, palpitations, heavy sweating, bright red face, and so on.
Because of the situation and these dangerous numbers I am effectively “trapped” flat on bed or couch for 23 1/2 hours a day. 
Believe it or not this is better than it was! Before my diagnosis of Dysautonomia/POTS last February I was seeing such terrible vitals I and my PCP feared for my life! Last September I was in Tachycardia and Hypertension Urgency every day even lying down. Seven ED visits and dozens of specialist visits offered no help. I believe my Primary saved my life by adding the beta blocker Metoprolol. This stabilized my vitals and although still very high it stopped the excursions above 200/100, HR 200, my vitals were still unacceptably high.
As a result I was bedridden for 8 months.Then after diagnosis and 2 gallons water and 10 grams salt my numbers finally improved, but only flat and moderate sitting. But I am still flat bound 23 1/2 hours a day, to keep vitals okay. Yesterday I “experimented”, trying to fix a broken pipe. I prepared and limited myself to 3 minutes standing/sitting working at a time, BUT after three cycles I had to give up, numbers were scary high and I became symptomatic. Not going to die for a pipe! Very frustrated! Had to give up and call a plumber. And it flared me so numbers are bad today.
I have started the CHOP exercise program and see encouraging signs, better vitals after the exercise sessions. But I’m limited by my severe left hip joint deterioration, bone on bone. As a result the CHOP leaves me with 9/10 hip pain (with meds). I’m hoping that after my upcoming total hip I’ll finally be able to stay on and progress the CHOP, get my vitals under control and BE FREED FROM FLAT LAND!

From my flat couch, 

Sincerely,

Doug

[little_blue_jay]

On 10/4/2023 at 3:06 PM, MaineDoug said:

I have a lot of BP issues. All directly correlate with position and attempts at activity, even mental. My BP flat and calm, hydrated and salted, is great, 114/70, HR 55, but seated 140/85, HR 75, standing is weird, often initially hypotensive 80/40, 50, then after standing for several minutes or walking and exerting numbers are terrible, up to 200/110, HR 185, requiring immediate flat, legs up, and meditating. With these techniques I can get down to 120/75, 60 within minutes! Flares make my vitals more unstable, and once triggered it’s hard to get it back down. During the hypertensive episodes I am also symptomatic, headaches, chest pain, palpitations, heavy sweating, bright red face, and so on.
Because of the situation and these dangerous numbers I am effectively “trapped” flat on bed or couch for 23 1/2 hours a day. 
Believe it or not this is better than it was! Before my diagnosis of Dysautonomia/POTS last February I was seeing such terrible vitals I and my PCP feared for my life! Last September I was in Tachycardia and Hypertension Urgency every day even lying down. 

Have you had your hip surgery?

Your story is frightening,  especially as I keep seeing from here and other POTS forums that POTS isn't supposed to be life-threatening?! 

How are you doing now? 

[MaineDoug]

@little_blue_jay,

I hope I can provide you with some clarification and reassurance!

My left total hip replacement is scheduled for 3/18/23. I have been working hard at the “CHOP POTS” exercise program. I’m on month 2, week 2. I am seeing very encouraging improvement in symptoms and vitals! I rarely see BP higher than 135/85 and HR 80 now, even with short standing and walking! I’m hoping that after my hip replacement I’ll make even more gains. 
 

The “life threatening” issue is a little confusing for me to. I think that the references to POTS being non-life threatening are referring specifically to the direct effects of the condition, signs and symptoms. And that does seem to make sense. Of course, the unstable and very high vitals I experience are certainly not conducive to long life and are certainly correlated with my POTS.
So to me it’s a matter of perspective. Will POTS kill me. Directly, not likely. But sudden variable blood pressure  going up to 200/110 sure could! 

I am crediting my recent improvements to the CHOP exercises. The CHOP instructions warn that you may feel worse for the first couple of months. This was true for me. The first month was very difficult, hard to get motivated, sore joints from years of being debilitated and occasional vital sign spikes during exercise. But I track my vitals daily and the improvement over the last month is dramatic. I haven’t seen a number worse than 145/85 in a month! 
 

You mention your concerns. What concerning symptoms do you experience? How are your vital signs? Have you identified any trends in your signs or symptoms? Good luck and good health! 

[little_blue_jay]

5 hours ago, MaineDoug said:

@little_blue_jay,

What concerning symptoms do you experience? How are your vital signs? Have you identified any trends in your signs or symptoms? Good luck and good health! 

I'm in a bad flare right now. It seemed to start Nov 11th after being badly startled by cannonfire at a Remembrance Day event..  I caught covid Dec 10th and it exacerbated it badly as well, been downhill since.

I just came home from the ER after a trip there.. by BP was 135/80 then came down to my usual 109ish.. they ran several EKG, troponin, etc and said everything was fine, follow up with my doctor,  etc.

[MaineDoug]

Sorry to hear about your flare. The symptoms and vitals you list seem encouraging to me. Just follow up with your doc. 

My BP/HR issues developed slowly over about 12 years. At first everyone thought the worsening vitals were due to organ damage from systemic RA and/or the side effects of the RA meds. As time passed my cardiovascular symptoms became my most limiting and frightening issue. I saw 5 cardiologists who all found abnormal EKG’s, and abnormal echocardiograms, indicating a shrunken shriveled heart, like a raisin! In a recently athletic man? And yet they all said “something’s wrong, but it’s not the muscle or arteries so…” they shrugged and sent me on my way. And I kept getting sicker! 
 

But I kept fighting! Fighting for the care I deserved and fighting for the answers I knew were out there! Don’t give up, keep learning, researching and experimenting! Persevere and don’t stop until you get the answers you deserve!

[Sarah Tee]

@MaineDoug, I’m so glad CHOP exercises are helping. It must have been so hard at first, but great to hear you are seeing results.

Also – nice reference to Flat Land!