#idk if the situations in my life are triggering me bc of my cptsd with familial instability

[lancedoncrimsonwings]

hi I think I know what might be your medical issue?

Long story short I am in a server where you talked about your “mystery” dysautonomia a while back (I was looking for another comment and saw that one) and I have the exact same symptoms, tho slightly milder at their worst. I have hyperadrenic POTS, a rare subtype of POTS where bp goes UP when triggered rather than down and which is caused by an overproduction of stress hormones in the body rather than solely a lack of vein strength or fluid production. I take propranolol for it, because hyperPOTS means chronic high blood pressure and the prop also helps w the heart rate. POTS is also oftentimes comorbid with nerve issues, especially hyperPOTS, since hyperPOTS can oftentimes be caused by stuff like damage to the brain stem. A lot of docs and cardiologists don’t know abt hyperpots cus it was super rare until covid hit, and I only got my diagnosis after seeking out a specialist bc 8 doctors and 2 ER trips had everyone scratching their heads. I’d be fine then I’d stand up and my bp would hit 170/100 and my HR would be 130. I’m sorry you’re dealing with medical issues and sorry for just dropping this in your inbox but I KNOW how scary and frustrating these situations can be. Hopefully this points you in the right direction??? Idk I’m no medical professional but that sounds like what I have.

Hi Anon!

I am personally grateful you did reach out, but I do have to put a statement here that I don't want people to reach out with unsolicited medical advice, please ask if its ok first!

I am happy to openly talk about my disabilities, BUT NOT EVERY DISABLED PERSON IS.

In my case, due to medical gaslighting I have medical PTSD, and sometimes even without it when people give unsolicited advice it can feel like I'm being told I'm not trying hard enough. (In reality, I'm on the losing end of the postcode lottery with a severely underfunded NHS and no ability to go private, with doctors that do not listen or care, whilst struggling alone against these debilitating and life altering symptoms.)

I do not remotely think you are doing that, Anon, and again I'm grateful for your ask, but such is the way I have to put a disclaimer up.

With that out of the way!

I have suspected HyperPOTs for a while, sadly my doctors have no interest in exploring further, they won't do the tests, they won't test my cortisol, they won't look into it, and given they have labelled me histrionic in the past I can't risk pushing more than I have.

I have tried propranolol in the past and sadly didn't get on with it, due to comorbidities, but have general sinus tachycardia (I meet criteria for IST, as my average HR over 24hrs is 99-110, anything over 90 is considered IST but I don't have an official diagnosis of it. My HR does come down to the 70-80s when asleep, but awake its usually over 100bpm. Case in point, its currently 137 and I'm only sat at the desk at work, alone, writing this)

The diagnosed they did give me were Vasovagal syncope and I have occasional episodes of SVT. (Documented) My official Dysautonomia diagnosis (Vasovagal Syncope aside) is "disorders of autonomic nervous system". I mean. Vague and nondescript as it is, it's fairly accurate I suppose.

High cortisol would make sense, given my cPTSD, or some form of adrenal fatigue in general. I do also have MECFS, ADHD, and we suspect EDs- all VERY commonly comorbid conditions with Dysautonomia in general. If I do indeed have Ehlers Danlos syndrome, (in referral stage atm) then this could be the overall cause, connective tissue disease resulting in a general brainstem dysfunction. (Which would explain the nerve problems, the numbness, sporadic muscle weakness, the Non Epileptic Seizures, severe motion sickness, episodes mimic the signs of stroke- potentially silent migranes, etc etc etc etc...)

Causes are great to know, and I wish I had the luxury of even that, but I suppose in the end they still give me little to no hope of treatment given there isn't really any that I'm not already doing, they will never offer me anything else. So long as MS remains ruled out, I'll be happy enough to survive with the mediocrity I get from my doctors.

Hopefully I get some answers one day. I don't imagine I really will, though.

Dysautonomias are awful to deal with and I hope that yours is tolerable, Anon. May you have many low symptom days!

(Sorry if this rambling mess made no sense!)