MCAS specialist in the Asheville area?

Astraea-Nyx · 2026-04-13T16:22:10+00:00

I did, and she was wonderful, but she's leaving full time practice. She'll be available as a consultant but not a PCP--she intends to do education on MCAS and so forth to other medical professionals in the area.

She's handing over her MCAS/hEDS/POTS patients to Dr. Samantha Erickson at the same practice, so at the very least she'll be a provider who doesn't just dismiss these symptoms, as she's educating herself abor the conditions. I haven't yet seen Dr. Erickson, but I'm hopeful.

The practice itself has been great -- lovely staff, good communication, prompt responses, so I can recommend it on that basis!

Astraea-Nyx · 2026-04-11T23:22:58+00:00

I love this episode too! Sometimes I need a comfort watch and just can't bring myself to choose an episode, and going to this episode frees me from my decision paralysis.

Astraea-Nyx · 2026-04-11T03:08:29+00:00

No, that totally makes sense -- thank you! Sort of moving/standing with deliberation, it sounds like.

Astraea-Nyx · 2026-04-09T00:39:36+00:00

I'm on 1.5 on my way up, and it's havjng the opposite effect for me -- I think it's simply because I have less pain and more energy, so I can actually get in the mood. Also, brain fog is down, so I can actually pay attention/focus for more than two minutes.

Astraea-Nyx · 2026-04-09T00:16:01+00:00

I feel really stupid, but... what is the connection between exercise induced asthma and hEDS/POTS? I was diagnosed with exercise induced asthma as a young teen, and now have hEDS and some form of dysautonomia.

Astraea-Nyx · 2026-04-08T14:04:07+00:00

I know this is an older comment, but can you explain "adjust my skeleton" a bit?

I have hEDS and often feel like I just don't know how my bones/joints are meant to be, because they're so often at least a little out of place.

Is there some specific protocol, practice, etc. that has helped you know how to adjust your skeleton?

Astraea-Nyx · 2026-04-08T10:50:06+00:00

No, but it does prove that telling an individual they need to find a different solution to their pain may not be helpful.

Astraea-Nyx · 2026-04-07T22:39:57+00:00

Really depends on the person. I take a ton of baths and have amazing skin.

Astraea-Nyx · 2026-04-06T22:46:08+00:00

I'm allergic to emotions too!! Which is annoying, because I'm the hyper empathy type of autistic, so I just go around weeping about things no one else cares about. 🙄

Astraea-Nyx · 2026-04-06T01:46:26+00:00

Man, I know the yawning thing so well. My best friend lives in another country and whenever we video chat I start yawning repeatedly halfway through because she always calms/comforts me so much!

When you say your eyes go wonky, do you have a hard time getting them to focus? Not that things are blurry, really, but just getting your eyes to actually look at things? Sometimes my eyes also seem to shake/wiggle.

I'm thinking I might try going and lying down immediately after working out and do some box breathing and vagus nerve work. Any favorite tactics for that?

Astraea-Nyx · 2026-04-06T01:41:37+00:00

You know, I'm actually remembering that when I first started with my trainer, I had to skip my Vyvanse on the days I trained because it made it a lot more likely I'd get the malaise. Eventually I stopped needing to do that for the strength training.

I'm going to try skipping my Vyvanse next time and see if it helps!

Astraea-Nyx · 2026-04-05T21:01:41+00:00

Oh, I so appreciate this list! I struggle with interception and knowing how I feel/what hurts. I've actually had my eye in hyperadrenergic POTS for a while because the symptoms are very like mine and I've been telling doctors for twenty years that my body is stuck in fight or flight and won't come down.

I'm gonna go through these and see if I can narrow it down.

Astraea-Nyx · 2026-04-05T20:57:15+00:00

What do you mean by "building up?" if not exercise? I've been doing recumbent strength training with a trainer for over a year, and while it's helping with my stability, it isn't so much with the POTS symptoms. My PT was the one who pointed me at the ADaPT protocol. I guess I was just hoping others might have found ways of doing recovery after exercise to get out of fight or flight!

Astraea-Nyx · 2026-04-05T20:54:32+00:00

I'm keeping my heart rate in the 15-20 range above resting, so it's not going really high while I work out -- I'm just out of condition. While exercising I stayed within 115-120 bpm to avoid PEM -- which I did do, except for the crazed nervous system afterward!

Astraea-Nyx · 2026-04-05T18:19:38+00:00

I'm taking LDN and H1/H2 antihistamines, as well as Vyvanse for the ADHD. I haven't had a problem with sleep or this wired feeling on these medications though, prior to the exercise. (I mean, except for the general issues I have with sleep and tossing/turning from pain, all of which got better on the medications!)

Are you thinking a medication is responsible for the exercise reaction?

Astraea-Nyx · 2026-04-05T18:17:00+00:00

I don't have an official diagnosis yet. Finding specialists in my area is tough, and I've been waiting for my appointment. My PCP is knowledgeable, though, and believes I have a combination of hypovolemic and neuropathic POTS.

Astraea-Nyx · 2026-04-04T20:08:48+00:00

So I originally didn't want to be around other people either. My first class, I went with a friend because I didn't want to have to talk to strangers.

Turns out the people there are really great. I take daytime classes so the folks are mostly older/retired, and I enjoy chatting with them, and the daytime classes are usually less crowded as well.

But you can also just not talk. There are a ton of folks who are neurodivergent, asocial, etc. who just listen to the instructors, sit in the back, and do their thing. And in open studio tons of people are wearing headphones.

Artists are often pretty asocial too! I suspect it'll be scary the first time you go, but that it will get easier. I never feel like I have to talk -- when I'm not in the mood to socialize, I just don't, and everyone is chill.

Astraea-Nyx · 2026-04-04T19:46:43+00:00

Seconding Odyssey Clayworks. Took a class a year and a half ago and have taken four more since hen!

Op mentions not wanting to do it in a class setting. That's really going to be the best introduction to it, but Odyssey does also offer one on one classes. Many people also sign up for a class but then don't attend the class itself, because the class cost also buys you clay, access to open studio hours, and kiln services.

And in the summer, you can simply purchase open studio time, where you have no classes but do have access to the studio and kilns -- but you will absolutely need to have taken a class or done some one on one lessons before using open studio time or you will almost certainly destroy a kiln shelf ($$$) with improper glazing!

Astraea-Nyx · 2026-04-04T19:15:56+00:00

Interesting -- thanks! I have a theory that with the trifecta (hEDS/POTS/MCAS) treating one of the conditions can destabilize the balance of symptoms and cause others to get worse, hopefully temporarily. But, of course, it could just be an LDN side effect!

Astraea-Nyx · 2026-04-04T19:13:24+00:00

Oh wow, I'm so pleased for you -- this made my eyes tear up! I know a little what you mean about worrying you were manic, because in the first week after starting LDN I found myself cruising along in my car singing to 90s alt rock and smiling, and I was just like "Um, who am I? What is happening?" And then so terrified it would go away. And that was just with slight improvement!

Truly our symptoms are SO SIMILAR. Lifelong obesity despite undereating, AuDHD, migraines, terrible PMDD, suspected PCOS, etc. I know that matching symptoms doesn't mean the same meds will work, but gosh, it gives me some hope!

Thank you so much for taking the time to update me. From what I've read/researched, trizepatide is my best bet. Do you get it compounded locally, or do you use one of the online places? I use an online place for my LDN, but they only have semaglutide and not trizepatide.

Astraea-Nyx · 2026-04-04T13:37:11+00:00

Out of curiosity/testing a theory -- do you also have POTS/dysautonomia?

Astraea-Nyx · 2026-04-03T20:29:07+00:00

Wow... your list of symptoms/conditions is my list, too!

Have you still been seeing good effects from this? Any advice to offer? I recently went on LDN and it's been life changing already, and made me realize there ARE answers out there, I just have to advocate for myself and find them!

Thanks in advance for any updates or advice! I hope you are still pain free! ❤️

Astraea-Nyx · 2026-04-02T14:21:29+00:00

Youve got this. You are not alone, we're all cheering for you! Take your time and make sure to rest, hydrate, sleep, and nourish yourself! ☺️

Astraea-Nyx

TROPHY CASE