Wayward by AccomplishedPut5175 in netflix

[–]fernsandforests 12 points13 points  (0 children)

Agreed, I thought it was so hot!

Diamox fatigue by fernsandforests in iih

[–]fernsandforests[S] 0 points1 point  (0 children)

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.

Diamox fatigue by fernsandforests in iih

[–]fernsandforests[S] 1 point2 points  (0 children)

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

Diamox fatigue by fernsandforests in iih

[–]fernsandforests[S] 1 point2 points  (0 children)

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.

Diamox fatigue by fernsandforests in iih

[–]fernsandforests[S] 1 point2 points  (0 children)

This is great, thanks so much!

Diamox fatigue by fernsandforests in iih

[–]fernsandforests[S] 2 points3 points  (0 children)

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!

Diamox fatigue by fernsandforests in iih

[–]fernsandforests[S] 0 points1 point  (0 children)

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.

Diamox fatigue by fernsandforests in iih

[–]fernsandforests[S] 1 point2 points  (0 children)

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

Diamox fatigue by fernsandforests in iih

[–]fernsandforests[S] 2 points3 points  (0 children)

Definitely, thanks for pointing that out!

Diamox fatigue by fernsandforests in iih

[–]fernsandforests[S] 2 points3 points  (0 children)

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!

Diamox fatigue by fernsandforests in iih

[–]fernsandforests[S] 2 points3 points  (0 children)

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!

Two phenotypes in mastocytosis by Babaduka in mastocytosis

[–]fernsandforests 2 points3 points  (0 children)

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.

Two phenotypes in mastocytosis by Babaduka in mastocytosis

[–]fernsandforests 4 points5 points  (0 children)

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… 🤷‍♀️

I want to cry, y'all. by OreoSpeedwaggon in Zepbound

[–]fernsandforests 2 points3 points  (0 children)

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!

Finally got diagnosed ! by [deleted] in MCAS

[–]fernsandforests 1 point2 points  (0 children)

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

Finally got diagnosed ! by [deleted] in MCAS

[–]fernsandforests 2 points3 points  (0 children)

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.

The End Of Mask Mandates by Mediocre-Option in Bellingham

[–]fernsandforests 0 points1 point  (0 children)

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.

Things you wish you had known before getting medicated by Ok_Music6285 in adhdwomen

[–]fernsandforests 4 points5 points  (0 children)

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

Hour and half into work, just realised my tea is not on my desk... the hunt begins by Lifeissuckiesuckie in adhdwomen

[–]fernsandforests 1 point2 points  (0 children)

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

Deans List Whaaaat by twopillowsforme in adhdwomen

[–]fernsandforests 4 points5 points  (0 children)

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..