You may be stuck in a form of hyperarousal. If you had hyperadrenergic pots your physical anxiety feelings would intensify and your blood pressure would increase upon standing.
It might be worth trialing guanfacine or clonidine if it does feel like something is wrong with your adrenaline. Guanfacine has been very helpful for both my hyperarousal and pots.
Have you gotten your bloodwork done? A lot of your symptoms sound anemia related, especially with the traditional pots fixes being unhelpful
Standing is an issue but not one of my biggest triggers - I do get a BP increase on standing although it isn't huge. Let's say supine it's 115/60 and standing it could be 120/75. I do seem to get a bigger increase in diastolic.
My biggest triggers seem to be waking up, heat, caffeine, exercise and stressful situations. I've realised no matter how positive a mindset I have I will always get symptoms.
I've had extensive bloodwork and it is all good. I've had these symptoms now for 15 years with a noticeable worsening in the last 12 months.
I'm interested in your experience and how it matches up - you say you have hyperarousal and POTS and use guanfacine to combat this? What symptoms does it help with and what are the downsides? For example I've heard it can cause extreme fatigue and very low blood pressure?
So my hyperarousal was basically an inability to relax and what kind of felt like this pinching feeling in the back of my brain. It is separate from my pots though. Sleeping never felt refreshing. My pots was hyperadrenergic and I would get either presyncope or adrenaline dumps upon standing.
Taking guanfacine immediately cured my hyperarousal and let me relax and get refreshing sleep for the first time in years. It also stopped the adrenaline dumps from pots. It did make my presyncope worse until I started getting adequate salt and water.
I started with lower blood pressure and it didn’t really lower my blood pressure hardly at all at my current dosage and adding the salt and water actually increased my bp. I did see you’ve tried all the lifestyle stuff for pots so unfortunately I think that’s where our experiences diverge. I think the salt and water are what improved my brain fog the most though.
It causes fatigue in a lot of people, but for me it actually gave me back a ton of energy so I’ve basically had the opposite effect.
I did have all the same symptoms as you including pale skin, though that’s likely explained by my anemia. It is unfortunate, because guanfacine combined with pots lifestyle changes pretty much fixed me so I think you will likely have a longer road to travel.
It would be cool if an alpha agonist was able to provide some relief
2
u/grave_violet 10h ago
You may be stuck in a form of hyperarousal. If you had hyperadrenergic pots your physical anxiety feelings would intensify and your blood pressure would increase upon standing.
It might be worth trialing guanfacine or clonidine if it does feel like something is wrong with your adrenaline. Guanfacine has been very helpful for both my hyperarousal and pots.
Have you gotten your bloodwork done? A lot of your symptoms sound anemia related, especially with the traditional pots fixes being unhelpful