u/northCoastLie

Been dealing with lc for a year now and have been researching treatments. Currently exploring or already using some of these and curious if anyone has experience with them:

Urolithin A, Hydroxychloroquine (HCQ), Icariin, Serrapeptase, SAMe, Larazotide, Idebenone, Methylene Blue, Full spectrum CBD/CBG (without thc) oil, Ivermectin.

Particularly interested in whether any of these made a noticeable difference for MCAS symptoms, post-exertional malaise, brain fog, tinnitus or exercise intolerance. I’m already on a long list of supps, including LDN, ketoifen, crom sodium, idebenone, methylfolate and lots more.

Urolithin A: specifically interested in this one for ACE2 receptor upregulation and mitophagy. LC appears to downregulate ACE2 via spike protein binding which leads to angiotensin II accumulation, vascular inflammation and mast cell activation. Urolithin A reportedly upregulates ACE2 expression and clears damaged mitochondria. Has anyone noticed improvement in vascular symptoms, exercise tolerance or mast cell reactivity from it?

Did anything work, make things worse, or surprise you? Any dosing insights or things to watch out for would also be appreciated.

I used to train 6 days a week, 1 to 2 hours per session, and did cardio every other day on top of that. I was a competitive bodybuilder with a very high fitness level. Then vestibular migraine entered my life and turned everything upside down.

What happens now during and after training is that mid workout my brain feels like it’s shutting off. I get a near loss of consciousness feeling, blurry vision, and difficulty speaking. Every time I introduce a new exercise I get dizzy. Specific movements like bench press, squats and deadlifts are completely off the table for me right now.

The strange thing is the worst symptoms often hit in the car on my way home, about 45minutes after training rather than during. Like my body holds it together while I’m pushing through and then completely crashes afterward. I need a full rest day after every single session now, if not two days.

I’ve been trying everything I can think of to manage it. I use electrolytes and HBCD during workouts, take fast carbs immediately after, and take an antihistamine 1 to 2 hours before every session. These things help somewhat but nowhere near enough.

I recently found out my atlas vertebra was misaligned and had it adjusted. The improvement in mental clarity afterward was immediate and noticeable which makes me think the cervical spine and trigeminocervical complex might be playing a significant role in my situation

I’ve been going deep into research on what could actually heal this rather than just manage it. I’ve come across information on peptides like Semax and Selank for neuroinflammation and BDNF restoration, SS-31 for mitochondrial dysfunction which seems very relevant since vestibular migraine brains are documented to have an energy deficit, and low dose naltrexone for neuroinflammation and mast cell modulation. I’ve also read about Dihexa for neural rewiring and VIP peptide for mast cell regulation.

Has anyone here gone down the peptide route or tried anything outside of conventional treatment that actually made a meaningful difference? Particularly interested in whether anyone has found something that addresses the root cause rather than just preventing attacks.

Also curious whether anyone has experience with cerebrolysin for vestibular migraine or migraine with aura, specifically around neuroprotection and potentially reducing stroke risk which is something I’m mindful of.

For those who were previously very athletic and active, did you manage to return to high intensity training? And if so what was the thing that finally allowed that to happen?

Would really appreciate hearing from anyone who has been through something similar. This condition has taken a lot from me and I’m determined to find a real solution. Also if someone has hypothyroidism and has found any connection, that would be super interesting to read about.

A weird side note, I’ve read about others using glp1s fine, somehow I get a full on ”attack” a day after using it.

EDIT: I’ve noticed that fluctuating hormones, specifically estrogen (high or low) causes heavy symptoms instantly.

EDIT 2: And this damn pulsatile tinnitus has been nonstop for a year, anyone figured out how to rid it?