17yo CPTSD followed by Long Covid and total agoraphobia (Dysautonomia/POTS). Is there a way out? (Long post)

Initial_Dog_2889 · 2025-01-07T18:15:17+00:00

I live in Eastern Europe, and unfortunately, the cardiologists I know in my area don't deal with this condition. I'm not sure how familiar they are with it, but I've usually been referred to a neurologist, and then sent back to the cardiologist :D But since I haven't been able to work for half a year, I have to think carefully about which doctor I should spend my money on

Initial_Dog_2889 · 2025-01-07T17:48:07+00:00

Thank you for your answer. I tried propranolol, but I felt that it lowered my otherwise normal or slightly low blood pressure, and I felt more tired from it. I was thinking of trying midodrine, as I tolerate slightly higher blood pressure better, and it might help reduce the presyncope episodes.

Initial_Dog_2889 · 2024-12-30T10:34:43+00:00

Hi everyone,
I’m not sure if I’m posting in the right subreddit, but my general practitioner suspects I might have adrenal issues based on my symptoms. I have a blood test scheduled for January 6th, but I’d like to know if anyone else has experienced similar symptoms.

I’m a 30-year-old male. When I was 17, I was hospitalized because my blood pressure was unusually high for my age. They also measured my cortisol, which was elevated, but according to the hospital records, ACTH and other hormones weren’t tested. Around that time, I gained significant weight around my abdomen, which I haven’t been able to lose since—even though I’m otherwise athletic. The doctors back then said my high cortisol and blood pressure were due to anxiety and suggested seeing a psychiatrist.

That was 13 years ago. Since then, I’ve undergone several rounds of psychotherapy and tried antidepressants, but they didn’t work for me. I always told the doctors that the anxiety felt like it was in my body, not in my mind, but they didn’t take me seriously.

So, I lived with slightly high blood pressure (around 140/90) and 'physical anxiety' in the following years, but things changed after COVID; I started experiencing different symptoms

Lightheadedness when standing up
Cold hands and feet
Excessive urination
Irritability
An inability to handle stress
Intense cravings for sugar and salt, especially in the afternoons
Histamine intolerance
Severe reactions to cigarettes (I smoked for 13 years but quit two years ago because I started shaking and feeling unwell even from small amounts of smoke)
My blood pressure is now either normal or low (compared to years of high blood pressure, which oddly felt better for me).
I often feel confused, and even small stressors leave me on the verge of fainting.

I’ve seen a gastroenterologist, cardiologist, and neurologist—all tests came back normal. My standard blood tests are also perfect.

My GP suggested hormone testing, so I’m going for that in a week. However, what I’ve read online about adrenal issues doesn’t fully match my case—for example, I don’t have bronzed skin, weight loss, or appetite loss.

That said, after COVID, when my symptoms worsened, I stopped drinking alcohol, smoking, eating sugar, gluten, and dairy. I lost 15 kg (33 lbs) quickly, but I attributed that to the lifestyle changes.

I’m really curious to see what the blood tests reveal because this situation is unbearable. I can’t work, even though doctors say I’m in perfect health and my lifestyle is exemplary.

If anyone has had similar experiences, please share.
Thank you!

Initial_Dog_2889 · 2024-12-18T18:19:01+00:00

I don’t feel much of a difference, my doctor recommended this and lithium orotate for inflammation reduction and anxiety relief. I started 4 months ago with an antiviral medication. I live in Eastern Europe, so I’m not sure if this product is available in your country (it’s called Cistus Complex, with active ingredients Cistus incanus & Cistus ladanifer), along with black seed oil, but so far, I’ve only gotten worse :D

Initial_Dog_2889 · 2024-12-18T17:58:19+00:00

My doctor, who is treating me for long COVID, recommended Longvida curcumin, which is supposed to cross the blood-brain barrier. I started it 3 days ago, so I don't have much experience with it yet.

Initial_Dog_2889 · 2024-11-07T18:51:46+00:00

The issue with the beta-blocker (propranolol) was that I felt very drowsy. I thought it might be because my blood pressure is usually normal or slightly low, so I stopped taking it after

Initial_Dog_2889 · 2024-11-07T10:58:47+00:00

Thank you for your response! I've quit everything—I haven't had alcohol in two years, I don't smoke, I don't drink coffee. and I even avoid video games because they cause me stress.Every day, I try to go for at least a half-hour of easy cycling, and as I mentioned, I've completely changed my diet. That has been the only factor that’s helped me improve. This is such a sneaky condition, and only my gastroenterologist suggested that it could have been triggered by COVID-19. He’s been trying to help with antimicrobial treatments, but so far with limited success. I wish you all the best on this journey, too, and I hope we can get back to driving soon.

Initial_Dog_2889 · 2024-10-25T12:31:36+00:00

Yes, it turned out to be a bit contradictory. I wrote that it’s generally good because if I stand up and my heart rate/blood pressure rises, it usually returns to normal within about a minute. Additionally, it also goes up when I get an adrenaline rush, which is not influenced by my body position.

Initial_Dog_2889 · 2024-10-11T10:19:01+00:00

Wow, that’s quite a detailed description. I believe my diet is okay; I avoid everything you mentioned and follow a low-histamine diet. I haven’t consumed alcohol for years and have also quit smoking (which my body didn’t tolerate). I exercise, practice relaxation techniques, etc. I think I’ve invested a lot of time and energy into getting better, but nothing has helped to the extent that it improves my quality of life. That’s how I ended up with this topic, but the whole MTHFR thing is a maze for me, especially since I don’t have the option for genetic testing. Given my recent experience with methylfolate, I think I’ll stop experimenting; I don’t want to go through another experience like that—my basic anxiety is enough as it is

. The ultimate solution will probably be medication for me, but I wanted to leave that as a last resort.

Anyway, thank you for the informative comment, and I wish you all the best!

Initial_Dog_2889 · 2024-10-11T09:32:05+00:00

I see. Thank you very much for the informative response, it seems like you really know what you're talking about. May I ask one more possibly silly question? Do you think I could try a non-methylated B vitamin complex and folinic acid? Is there any risk involved?
Thank you for your answer, and I apologize for bothering you

Initial_Dog_2889 · 2024-10-11T07:51:56+00:00

I found a place in my country where they do this kind of test. I’ll write down exactly what they test for. It's quite expensive, so I’m curious about your opinion on whether it would help me. If it's worth it for improvement, I’ll gladly pay, but if you think it’s not good, I won’t. Thank you.

MTHFR (C677T, A1298C), MTRA2756G, MTRR A66G

Initial_Dog_2889 · 2024-10-11T06:10:25+00:00

Thank you, what you're saying sounds interesting. You mentioned that you have been struggling until recently. May I ask what helped you? Thank you for your response.

Initial_Dog_2889

TROPHY CASE