Hyperadrenergic pots/medical PTSD treatment

[Rufous McKinney]

spikes as high as 160/90 at the doctors--when it gets above 150 they really freak out.

Oh yes I can generate those kind of numbers. And sometimes I feel outwardly fairly relaxed, and can still generate a white coat number. So it can be high without the direct anxiety feeling.

As a younger person, you are not that likely to have high blood pressure generally.....(generalizing) so it seems like they would better recognize this is an anxiety response...and I would agree with your assessment that the ME is worsening and intensifying it. It just does that, and we know that.

My blood sugar gets very bad during these episodes and that further spikes the numbers.

and it likely doesn't matter, but I do take one beta blocker to lower my high blood pressure. Yet was having the low blood volume experience- very odd.

 

[Rufous McKinney]

finding a good pcp while on the road is difficult

Its just like a completely random accident. You'll find somebody who actually can help you, and they may be in the oddest place. My wonderful doctor was six parking spaces away from the horrible doctor for 10 years and I was foolish to have not somehow: discovered that.

 

[frozenborderline]

and it likely doesn't matter, but I do take one beta blocker to lower my high blood pressure. Yet was having the low blood volume experience- very odd.

I've tried beta blockers and they made me feel awful. I think me being young doesn't necessarily make them recognize it as anxiety but makes them even more concerned in an odd way. Because it shouldn't be that high. It always seems like doctors are concerned with the wrong things. If I didn't have bp spikes every PCP would tell me im perfectly healthy. Even though im almost bedridden

 

[Rufous McKinney]

My wonderful doctor was six parking spaces away from the horrible doctor for 10 years and I was foolish to have not somehow: discovered that.

Perhaps its the hunt for the non-traditional traditional doctor. Thats what mine is. This makes him approachable and not threatening, and he respects patients, their views, their experiences.

He doesn't prescribe many things because he knows they often don't help. He knows people want all these procedures and often they are contra-indicated. He takes people off the too many pills they are taking.

But how did I find him: a total accident. When I entered the office and discovered it was the exact opposite of the other place (one doctor, one receptionist, paper files, small waiting room, nobody waiting) all that was indicative of not being treated as a cog in a medical factory. 45 minute appointments with the actual doctor (that never happened before). (the other place was four doctors, chaos, yucky judgy nurses, snide remarks about my white coat high blood pressure) (its amazing what a little bed side manner can get one).

He understands that ME/SEID exist. The others did't.

From there, my cure has yet to be launched. I still don't know how to navigate to a neck assessment, or actual treatments.

 

[frozenborderline]

Yes this is basically what i need. I already have specialists but they're far away and can't always prescribe what i need , want a local doctor to do regular blood work and figure out the details of stuff like where to get my infusions etc. I don't need an ME expert or a naturopath. Just a caring PCP who isnt an asshole and believes totally that i am very ill. It seems like old school family medicine doctors tend to fit this category better

 

[Rufous McKinney]

Because it shouldn't be that high.

This stuff goes back to childhood for me, so I had no problem generating high bloodpressure in my 20's at any doctor appointment. But maybe they don't run into that many patients who experienced medical sexual assault on multiple occasions. Been sick since I was 1 years old. This creates powerful energies absorbed into the body, overcoming that can happen, its just challenging.

Your desiring saline? ...and therefore I would assume this is where they get BP obsessed.

 

[frozenborderline]

I'm so sorry that happened to you. Somehow I get medical PTSD without even having something that awful happen to me. It seems traumatic even for doctors to be neglectful rather than directly abusive, when one is in this much pain. So even though ive never had a doctor shout at me or anything I have ptsd reactions to the whole experience.

Yes, it's the saline. If they all read David bells work on hypovolemic hypertension in me/cfs they'd realize increasing volume doesn't always mean increasing pressure. But since thats the conventional wisdom...

 

[Rufous McKinney]

Just a caring PCP who isnt an asshole and believes totally that i am very ill. It seems like old school family medicine doctors tend to fit this category better

Yes: and that person is out there.

Mine is a cardiac specialist/writes books about his theories, claims nominated for Nobel Prize .

But he has that Non Traditional Quality- thats so refreshing. He also- personally fixed himself. He believes we have responsiblities to take care of ourselves, which I agree.

I"m actually puzzling: how would one find this type of doctor? Maybe stop by the local Senior Care place and find out what might be somebodies favorite doctor with bedside manners that is down the street. Ask. Pretend your looking for your mother. New in town, looking for a good kind doctor with bedside manners and patience FOR YOUR MOTHER.

(heh, this method may also reduce PTSD...because its not about YOU...your asking for your Mother).

 

[Rufous McKinney]

So even though ive never had a doctor shout at me or anything I have ptsd reactions to the whole experience.

The reaction is an understandable reaction, so there is no need to beat yourself up about it. You just want to examine it, in the calm light of day, and understand your desire is to de-escalate that. And your working on it.

Who knows...what gets established, but it just can and does. So you desire to work on it.

These issues maybe go back to control, loss of personal control of the body. Maybe even some past life thing.

 

[pattismith]

Actually alpha agonists worsened my CCI symptoms a LOT. Both the pain and sense of instability in tbe region and the vertigo/neurological symtooms. I wonder if that's because adrenaline is protective ans helps stabilize the joints by keeping the muscles tightt

I don't have POTS, so I am pretty ignorant about it, but I thought adrenergic pots involve alpha receptor activation (maybe I'm wrong?).
I had a look into alpha adrenergic receptor activation in brain during PTSD people who experience nightmares, they seem to do well under alpha blocker Prazosin:

https://forums.phoenixrising.me/thr...ity-in-dysautonomia.77641/page-4#post-2241716

;;;

 

[frozenborderline]

I don't have POTS, so I am pretty ignorant about it, but I thought adrenergic pots involve alpha receptor activation (maybe I'm wrong?).
I had a look into alpha adrenergic receptor activation in brain during PTSD people who experience nightmares, they seem to do well under alpha blocker Prazosin:

https://forums.phoenixrising.me/thr...ity-in-dysautonomia.77641/page-4#post-2241716

;;;

Prazosin is one of the two alpha agonists i tried made me feel awful. This is why I'm speculating that at least in my case the adrenaline is secondary, compensatory thing.. possibly like david bells "hypovolemic hypertension"

 

[pattismith]

Prazosin is one of the two alpha agonists i tried made me feel awful. This is why I'm speculating that at least in my case the adrenaline is secondary, compensatory thing.. possibly like david bells "hypovolemic hypertension"

Actually Prazosin is a central α1 adrenoreceptor blocker, not an alpha agonist ! This is why I was confused about what you were writing...

 

[frozenborderline]

Actually Prazosin is a central α1 adrenoreceptor blocker, not an alpha agonist ! This is why I was confused about what you were writing...

Oh wow. It seems youre correct but the reason I was confused is that it seems to get lumped in with drugs like guanfacine which is an alpha agonist , and has very similar indications and subjective effects. Weird. How could an agonist and inverse agonist have similar effects and be treated like similar class of drugs?

 

[frozenborderline]

So clonidine is also an alpha agonist not blocker, like guanfacine, but is sympatholytic and vasodilator just like prazosin. Is it possible that alpha agonism can produce similar effects as alpha blocking depending on the specific alpha adrenergic receptor subtype? That certainly sounds plausible to me since receptor subtypes vary so much in effects. Which alpha receptors does prazosin block? Clonidine agonizes alpha 2

 

[pattismith]

So clonidine is also an alpha agonist not blocker, like guanfacine, but is sympatholytic and vasodilator just like prazosin. Is it possible that alpha agonism can produce similar effects as alpha blocking depending on the specific alpha adrenergic receptor subtype? That certainly sounds plausible to me since receptor subtypes vary so much in effects. Which alpha receptors does prazosin block? Clonidine agonizes alpha 2

Actually Prazosin is a central α1 adrenoreceptor blocker, not an alpha agonist ! This is why I was confused about what you were writing...

 

[Jemima37]

I think this is a problem that's a combination of autonomic dysfunction ans teuama from the medical system. I will now avoid going to doctors even when it's necessary or beneficial for me , because I've had such bad experiences that I fear them. I'm not looking for somethinf that heals rhe trauma overall, just something that helps wbthe acute symptoms like panic etc when in a doctor's office. The PTSD makes my hyperadrergic pots and white coat Hypertension way more intense. My bp. Is nwvwr high af home but is very high at doctors

I react badly ti beta blockers but considering that alpha agonists may be more tolerable

I suffer the same. Medical ptsd so cant attend doctors or even have that at my house. I have panic attacks and always get high bp which is never raised at home.

You arent alone and I hope you get through this in time
Jem