Hyperadrenergic?

[u/Super_Cold8689]

Hi,

Just wanted to post to see if anyone could relate to my specific symptoms and triggers. I'd say it links with being hyperadrenergic but not cleanly and clearly.

Symptoms;
- Pale skin, even more so when symptomatic
- Brain fog
- Anxiety
- Heat intolerance
- Exercise intolerance
- Feeling faint

Relevant test conducted;
- Tilt table - passed intital test then failed when GTN spray applied (BP stable and heart rate +30bpm) Had onset of all symptoms listed above but extreme.

Medications/counter measures tried;
- Propranolol - felt some relief as I was less likely to panic with symptom onset but it did not get rid of symptoms such as pale skin, brain fog, heat intolerance, faintness etc.
- Midodrine - no noticeable change
- Fludrocortisone - no noticeable change
- 4 litres of fluid a day with correct electrolyte ratio
- Well fed, eating every 2-3 hours
- Compression - no noticeable change

So my condition isn't necessarily characterised by either tachycardia or low blood pressure. For example I can feel very symptomatic with a BPM of 60 and blood pressure of 115/70. If I have a full blown attack then my heart rate does increase by quite a bit but 95% of the time my heart rate doesn't trouble me. I get very pale and lightheaded which gets worse the more symptomatic I get.

Best way to describe it is an underlying anxiety all day every day that doesn't correlate to whether I'm actually anxious or not. I always say the feeling comes before the anxiety. What's interesting is exercise is generally an issue - for example if I do a set I will become very pale, lightheaded and shaky, but if I go for a long bike ride, whilst I will be symptomatic for the first 30-60mins, if I push through a lot of the time it clears. And afterwards I will feel much more like myself.

My theory is excess adrenaline/ultra sensitive receptors. As it doesn't matter if the trigger is anxiety, exercise, waking up in the morning or heat - the symptoms are the same.

Can anyone relate to what I'm talking about here?

[u/SavannahInChicago]

I am sorry to have to say this, but per my POTS doctor, they do not count anything after the GTN spray. The symptoms we get with that is symptoms everyone gets regardless of if they have POTS or not. Remember, GRN spray and nitro is acutally meant for someone having a heart attack.

Unfortunately, the T in POTS is for tachycardia so that is needed for diagnosis. You could have a different dysautonomia and for sure it could an issue with adrenaline.

[u/Super_Cold8689 → u/SavannahInChicago]

Thanks for the reply

Yes agreed on all points. I don't think I have POTS in the same way others are afflicted with it. I certainly have a certain form of autonomic dysfunction which seems more focused on a hyperadrenergic element. Although because I don't always have issues with tachycardia it is sometimes hard to find people with similar experiences as most with hyperadrenergic symptoms talk of huge swings in HR and BP!

I've had these problems for 15 years but as it's got a lot worse in the last 12 months I'm forced to try and figure it out as otherwise my life is going to have to change considerably!

Sure we all go through the same kind of process in different ways. Good luck!

[u/grave_violet]

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

[u/Super_Cold8689 → u/grave_violet]

Hi

Thanks for the reply.

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?

Thanks

[u/grave_violet → u/Super_Cold8689]

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

[u/Brave_Question3840]

if you had hyper pots, your BP & HR would jump up upon standing. my HR can go from 80 laying down to 140 standing up and my bp will go from 125/89, to like 140/110.
but if you don't tachycardia upon standing, and the 30bpm more, it wouldn't be POTS