Hyperadrenal POTS?

[NerdyChristina]

Okay, so before I even had my Behcet's diagnosis, my doctors were concerned about my autonomic nervous system. I had periods where my blood pressure would get terrifyingly high, as high as 210/115, and I was also diagnosed with sinus tachycardia. The symptoms have only gotten worse and nobody seems to know why. I began having issues with hyperactive reflexes, muscle weakness in high temperatures, and exercise intolerance.

I began to suspect POTS, but didn't have the low blood pressure that's typical with POTS. I was on low dose blood pressure medication to help me sleep, but was removed about six months ago over fears my blood pressure may be dropping. There has been NO change since discontinuing the medication. Some days it's up, some days it's closer to normal, but it is never low.

During my last hospital stay they noted a very scary situation. At night my heart rate was dropping as low as 39. If I work up and sat up we could get it into the 60's. It wasn't always low though. It would be normal then drop. I wasn't up moving around because I couldn't walk at that time. When I was able to get up, I would push 150 to 160 beats per minute. The nurses and doctors were nervous and I ended up with a crash cart parked outside my room just in case.

For me, it's normal. Hot bath? Prepare to have to lay down for a bit after. Forget showering standing up, even with the grab bars installed. Lately it's become difficult to walk reliably though. I may be okay but I also may end up with a racing heart, and useless legs.

I know POTS is a common finding in patients with autoimmune illnesses, but hyper POTS is a lot less common. They've tested me for adrenal tumors. I did have elevated urine and blood catacholomines BUT no tumor. They were only mildly elevated, but it wasn't a shock to me since I can feel when I am producing too much of the flight or fight goodness.

Any insight? I don't want to be the patient that suggests things to her doctor, but he has mentioned autonomic neuropathy. I feel like hyper POTS makes the most sense aside from MS, which I don't have because I don't have lesions or elevations in my spinal fluid numbers.

[LostOH]

I haven't been diagnosed but it's on a short list for me. I posted a long first post if you would please read. But I have been having tachycardia despite just starting clonodine for newly elevated blood pressure as I now have oral ulcer following retinal vasculitis. My resting pulse bounds around 120-130 then lowers to around 80 then goes back up. It's been doing this for over a month now. My doctor thinks it's anxiety but sometimes it wakes me up from sleep.

It does sound a bit similar to yours but yours is quite serious as SVT is a potential deadly rythym. SBT is a resting pulse of 200 or more. From what I read in your post you are having this and it needs to be addressed as an emergency whether or not the doctors know if it's related to your Behcets or not.

As far as the dropping too I'm concerned that something could be stimulating or blocking nerve signals to your heart like a blood clot or vasculitis causing this to happen. From what I know about the disease and all the systems involved in regulating heart rythym it is entirely possible for Bechets to be the cause of this. It can go anywhere and effect any system. Are you under the care of a Behcets expert of any kind. I'm sure you have a cardiologist and if they were to have a basic understanding of vasculitis and blood clots I would think they could imagine what the causes may be and run the proper tests.

My prayers are with you!

Christie

[NerdyChristina in reply to LostOH]

SVT is super ventricular tachycardia and is a true emergency, sinus tachycardia (what I have) is uncomfortable but not an emergency, since the heart rhythm is fast, but regularly spaced. My dad had SVT and was shocked to be cardioverted which is why I've been checked a lot when my rate is up. In the hospital I was continuously on a heart monitor, and did a home study EKG, too. We ruled out dangerous rhythms like SVT, but couldn't diagnose why I was having such elevated and lowered rates without provocation.

Luckily I've been negative for clots, though my family history has resulted in regular screenings and monitoring for any chest pain etc. I'm sure the ER doctors hate me by now. They were sure I had a clot but had to rely on blood tests because I'm allergic to CT dye. Prior to blood work I was told I had a small clot, even with a negative calve ultrasound, because I'd recently had surgery and the pain, swelling, and warmth, just shouted DVT. With normal d-dimer tests though, they ruled it out.

I see neurology in a couple weeks so hopefully they'll have insight. Something is definitely off. I lost a game last night because it monitors your pulse to tell if you're panicking. I was, as usual, all over the map. Add in some actual increases via adrenaline from the scares in the game, and I was done. It kicked me out in a quiet scene for "panicking" when I was just sitting back and talking haha. I was only aware at feeling dizzy then the game alerted to me being at 160 and timed me out!