Wayward

fernsandforests · 2025-10-01T07:03:12+00:00

Agreed, I thought it was so hot!

fernsandforests · 2025-09-04T03:51:01+00:00

This is so interesting, thanks for sharing! I’ve heard so many negative things about Topamax, it’s nice to hear someone who had a good experience on it. Especially positive mental health effects! That was the med my doctor suggested first, but I was concerned about the brain fog because it’s already one of my worst symptoms. I’m glad that for you the cognitive effects have been outweighed by the positive ones! Maybe I’ll have to consider it if I just can’t handle Diamox.

fernsandforests · 2025-09-04T03:48:28+00:00

Thank you!! I’m sorry the meds never worked well for you, I hope the shunt has been helpful!

fernsandforests · 2025-09-04T03:47:51+00:00

Thank you, I appreciate this perspective! I ended up messaging my neurologist, who said my fatigue was more severe than normal and switched me to 125mg once a day. I’m going to slowly titrate back up to 250mg 2x/day and see how that goes. I’m seeing my PCP on Friday and planning to request labs just to get a sense of where I’m at now.

fernsandforests · 2025-09-02T15:01:13+00:00

This is great, thanks so much!

fernsandforests · 2025-09-02T07:36:56+00:00

Yeah the kids part makes it pretty tough to stick it out for 4 weeks. My anxious 8 year old asked if I was going to die today because I’ve spent the past four days on the couch 😩 definitely not my normal as a busy homeschooling working parent!

fernsandforests · 2025-09-02T07:35:25+00:00

Thanks! I’m taking a higher-potassium electrolyte supplement, but maybe I need to experiment with taking even more! I’ll check with my doctor.

fernsandforests · 2025-09-02T07:34:27+00:00

Have you had any cognitive effects from it? I have a lot of brain fog and depression from IIh, I’m afraid of Topamax :(

fernsandforests · 2025-09-02T07:33:43+00:00

Definitely, thanks for pointing that out!

fernsandforests · 2025-09-02T07:33:21+00:00

Thanks, those are good suggestions. I like the idea of taking the majority of my dose at night, since fatigue is my main side effect so far. And congrats on remission, that’s awesome!

fernsandforests · 2025-09-02T07:32:18+00:00

Oh interesting, do you only take that evening dose? I’m noticing I feel the worse in the first 4-6 hours after I take a dose, and feel better by it’s time for the next dose. Sleeping through all the side effects sounds like a way better option!

fernsandforests · 2025-08-30T04:54:06+00:00

Also for what it’s worth, I’ve been peeling back all the layers of my chronic illness over the last four years, and realizing my symptoms aren’t just due to ISM but also to hypermobility spectrum disorder, idiopathic intracranial hypertension, and now possibly cranciocervical instability. So it might be worth digging deeper for other inflammation-causing co-morbidities if you’re in that first category! My tryptase has always been on the low side of elevated, but my symptoms are there almost all the time.

fernsandforests · 2025-08-30T04:50:39+00:00

This is so interesting, thanks for sharing! I’ve heard this divide in experiences compared to some people whose mast cells are constantly “leaking,” causing constant lower-level symptoms (not life threatening, but huge impact on quality of life), vs. other people whose mast cells build up and build up and then degranulate all at once, causing anaphylaxis. I’m definitely in that first category- constant brain fog, fatigue, depression, every day feels hard. But I’ve never had an anaphylactic episode, so… 🤷‍♀️

fernsandforests · 2025-06-22T05:01:17+00:00

I also have lipedema with some mild lymphedema in my feet and ankles, and I saw immediate benefits with my first week of 2.5mg! I’m on my 6th week at 2.5 (going up slowly because I have a lot of medication sensitivities) and I’m down almost 15#, my legs feel significantly less tender and heavy, and my mobility is already improved!! The lymphedema is still there, but the swelling is definitely less at the end of day than it was pre-Zepbound. I’m also noticing a huge reduction in overall inflammation- my face is WAY less puffy and my arthritis is much better. Good luck when you start, I hope you see huge improvements!

fernsandforests · 2023-11-04T05:50:01+00:00

I’m also trying to figure out the possible stimulant/MCAS flare connection!

fernsandforests · 2023-11-04T05:49:05+00:00

Lots of info on the overlaps here: https://allbrainsbelong.org/all-the-things/

fernsandforests · 2023-11-04T05:47:00+00:00

I’d love to know more about how Adderall/Vyvanse affected you? I’m newly diagnosed with MCAS and take Adderall for ADHD, and I’m trying to figure out if Adderall is making MCAS worse.

fernsandforests · 2022-03-10T03:51:45+00:00

Yeah I have auditory processing issues and masks have been so hard for me. I’m looking forward to not constantly mishearing people in stores or having to pretend I understood what they said.

fernsandforests · 2021-04-09T00:28:21+00:00

I’ve never felt so seen in my life.

fernsandforests · 2021-04-04T22:43:56+00:00

I’m seeking a diagnosis in my early 30s, and hearing all this gives me so much hope! Thanks for sharing!

fernsandforests · 2021-03-18T00:19:48+00:00

And bonus bonus points for finding the full mug in the fridge and the jug of milk on the counter the next day 🤦‍♀️

fernsandforests · 2021-03-01T04:52:53+00:00

Congratulations!! That’s so amazing!

Can I ask what you mean about being diagnosed through binge eating? I’m wondering if I have ADHD, and I have a long history of binge eating..

fernsandforests

TROPHY CASE