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Advice on how to proceed with my symptoms

Messages
25
Hello, this is (probably?) my first post here. Let me know if I'm unclear about anything, as one symptom I have is a lesser cognition.

In Mid-April, I had a very sudden, scary episode, during which I was short of breath, incredibly thirsty, had rushes to the head, and felt anxious. Klonopin, my very-rarely as needed anxiety med, did not help at all - it made me even dizzier.

A few days later, working out at the gym promoted a similar episode, and before this I have lifted heavy weights for many years. In the weeks before these episodes, I had a viral infection for a week, I used nicotine lozenges slightly heavily, and I experimented with bacopa on and off - which may have had a negative effect on my anxiety (and raises acetylcholine...). A little over a month later, I started seeing a cardiologist, and after a few tests later, I was diagnosed with slight cardiomyopathy with an ejection fraction of 50% (normal is 55-70).

Since then, I have slowly eased up with stress reduction, as well as taking:
L-Carnitine Tartarate (250mg)
Ubiquinol (50-100mg)
Hawthorn extract
Arjuna extract
Carvedilol (alpha/beta blocker, 6.25mg/day)
Ashwagandha

As well as daily walking.

I have taken daily for a while:
60mg remeron
40mg baclofen
1000mg depakote
Magnesium

The dizziness has mostly gotten better, but i still feel a greatly compromised stress response. Today, I just had another minor episode, but I had a longer walk than usual last night, alongside some stress of getting lost in the woods at night.

I have been reading on this forum, and there are some symptom overlaps it seems (Such as the post-exertional malaise, physical or mental, though this fatigue seems to be cardiovascular. Either way, I went from strength training with no problem, to having anxiety about whether I'm walking too much). I am also generally scared about whether this will get better or not. Whenever I think it does, stress just builds up with little to no respite in sight.

I have seen a wonderful integrative psychiatrist for a while, but I am wondering if there are any other venues I could pursue to my healing process. I meditate and do yoga, but tension and stiffness can make it difficult sometimes.

Thanks so much for any advice!!!
 
Messages
25
What prompted me to write here was that I had my first episode while using nicotine, and I recently read a thread about acetylcholine sensitivity causing symptoms.

My episode today was also more than just minor- I felt an extremely uncomfortable head rush, as well as tightness and almost pain in my glandular area of the throat.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
Since you had a virus when all this was happening you might want to look into that.

Many of us here have viruses, HHV6, cmv, ebv.

Other smarter people will offer more suggestions
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
Hi @chzlime, check whether you have orthostatic intolerance. There's lots of information on that in this forum including instructions for a test you can do at home. POTSUK is a good website.

If you have orthostatic intolerance, you are likely to get dizzy when standing. There is a lack of blood flow to the head and this can result in a surge of adrenalin that can cause the anxiety response. It also can cause a tightness around the neck and shoulders.
 

halcyon

Senior Member
Messages
2,482
If you were previously healthy and had sudden onset of cardiomyopathy after an illness I'd look into testing for cardiotropic pathogens: lyme, coxsackie B, echovirus, parvovirus B19, etc.
 
Messages
25
Thanks everyone. I haven't really noticed anything relating to OI, but I did have my episode today soon after standing up from being in bed a while.

What's the value in testing for viruses? Are certain ones more treatable, and if so, would that suppress any further symptoms or damage?

Another symptom I have is soreness all over, which happens more readily the day after exercise, even walking. In the past, post-onset muscle soreness (POMS) wasn't too strong for me. My beta-blocker caused this a little bit at first with a higher dose, but I take less now.

I also used to have symptoms of histamine intolerance, but remeron takes care of most of that, being a strong H2 antagonist. It is still probably an issue, though.
 

alkt

Senior Member
Messages
339
Location
uk
cardiomyopathy is well known problem after a viral attack many of your symptoms can be explained by this and taking nicotine can also cause light headedness and high bloodpressure i would strongly suggest you read the adverse reactions part of your nicotine llozenges exceeding the daily dose can be lethal. and packing up smoking or reducing your nicotine intake will cause added anxiety.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
@Chziime , Bacopa monnieri is an acetylcholinesterase inhibitor, so far as I am aware (Aguiar & Borowski, 2013). It might actually help with the symptoms you're describing - I take what is essentially an herbal ACE inhibitor for my orthostasis (Vinpocetine, from Vinca sp.), and it's been really helpful, though it felt a little weird at first.

You said your throat hurts? When's the last time your thyroid was checked? Hip's roadmap could be of some use in determining what to do next: just don't read it all at once. Take the map one step at a time, paying especial attention to the things often confused for ME.

Viruses can be addressed via antivirals. I certainly also have some bacterial infections that contribute to my condition as well. Knowing what they are has helped me choose antibiotics as well as herbal remedies. For example, my particular brand of pneumonia doesn't like berberine, so I have goldenseal tincture sitting next to me pretty much always. My prescribed antibiotic are for my specific gut pathogens. It's important to have medicine that is targeted for your particular bug, or you can end up poisoning your system and killing even the good bacteria off. A skilled physician will hold off on the mustard gas and give you something more targeted.

Definitely ease off of the nicotine. Slowly.

-J


Aguiar, S., & Borowski, T. (2013). Neuropharmacological Review of the Nootropic Herb Bacopa monnieri. Rejuvenation Research, 16(4), 313–326. doi:10.1089/rej.2013.1431
 
Messages
25
Oh, I quit nicotine immediately after this all started in April.

Yes, I know Bacopa is an acetylcholinerase inhibitor, but I read a popular topic here that theorizes that sensitivity to acetylcholine (which Bacopa would raise) could cause CFS symptoms.

Vinpocetine increases blood flow to the brain, right? So that helps your blood flow orthostasis issues?

My next step will be to pay more attention to laying down / standing, which seems to be more and more of a lead the more I think about it.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Vinpocetine increases blood flow to the brain, right? So that helps your blood flow orthostasis issues?

Yes; though the first time I took it, it made me a bit dizzy, and the second time, too. However, I could feel blood rushing back to my head, which was awesome. I've been taking it for ages and it's one of my can't-live-without-it supplements.

-J
 
Messages
25
Is there any way to test for such cardiotropic viruses cheaply? Or would it be out of pocket per-virus test fee?