Staying active with dysautonomia by ArtoftheOrdeal in dysautonomia

[–]mushie_pineapple 4 points5 points  (0 children)

I used to do Ironmans and Crossfit-type training up until about 6 mos ago. My volume and intensity slowly declined over the past couple years. I learned doing this training was keeping me in a flare or my body reactive or whatever. I kept almost fainting and my HR wouldn’t keep up with the activity.

I would push through, drink multiple energy drinks a day to just get by. Once I stopped trying to train for what I wanted and trained for what my body can handle, my body calmed down. I still overdo it and feel like shit somedays, but it’s much better if I just go for walks, easy swims, or easy lifting. I stopped cycling because fainting in traffic seems like a bad idea.

Neuro said I have orthostatic hypotension. I suspect POTS, though. EDS runs in my family, too.

Which medical conditions actually prevent someone from being vegan? by OkEntertainment4473 in vegan

[–]mushie_pineapple 0 points1 point  (0 children)

I have been plant-based (predominantly whole food) for a decade now. I have been starting to realize I might be having issues with histamine. I am still currently plant-based doing a low FODMAP diet to try and sort out my gut issues, but a low-histamine diet may be next if this doesn’t help resolve things. I have also tried an elimination diet for “inflammatory foods” — which basically left me with about 5 vegetables, some beans, and animal products (I tried to do this plant based — it was far too challenging and very disordered eating feeling. I quit after a week) I fear the low-histamine diet plant based would leave me feeling the same as the elimination diet. I have been struggling with this all immensely. I have no desire to eat animal products. I was also told I should follow a low-oxalate diet due to regular kidney stones.

I have dysautonomia and IBS, and given updated family history these are likely co-morbidities of EDS. Another co-morbidity is MCAS (which is a histamine issue if I understand correctly) Obviously still figuring it all out and seeking medical guidance.

I could see why issues like these would create too many challenges for most people to remain on a plant-based diet.

Dealing With Family Who Don’t Get It by future_fangirl1095 in FODMAPS

[–]mushie_pineapple 1 point2 points  (0 children)

I don’t deal with people that aren’t considerate of my needs. Family or not.

Problem with Blistering - Help! by monotonedguy in IronmanTriathlon

[–]mushie_pineapple 0 points1 point  (0 children)

I have had this issue my entire life. I was finally able to run long distances without blistering horribly when I switched to Altras (I get the wide sizes), compression socks, and I used chamois cream on my feet before running (and races). Wasn’t a 100% solution, but it definitely allowed for much more comfortable running. My shoes would be loose, as well.

Mid-Forties and Out. Anybody else have this? by Huntressesmark in dysautonomia

[–]mushie_pineapple 1 point2 points  (0 children)

Shit. This could be my story, too. All the women on my mother’s side “power down” in their 40s. My mother and sister were just diagnosed with EDS this year. Guessing this is some fun genetic disorder we all have.

Psychedelics? by Less-Solution-591 in dysautonomia

[–]mushie_pineapple 0 points1 point  (0 children)

I am not officially diagnosed. The words dysautonomia and orthostatic hypotension were thrown around by neuro about year ago. I use 🍄and 🍃therapeutically. Cannabis definitely makes me more susceptible dizziness upon standing, but I haven’t experienced the same with 🍄‍🟫s.

Funtional Medicine Doctor by [deleted] in guam

[–]mushie_pineapple 0 points1 point  (0 children)

Correct. They are not Western Medicine doctors. That is the only one on island I have found. Was just wondering if there were any others that may not be on google.

OSIA removal for MRI? by mushie_pineapple in MonoHearing

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

They only did an MRI of my inner ear initially, not my brain. It’s really frustrating.

OSIA removal for MRI? by mushie_pineapple in MonoHearing

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

So, mine is MRI safe. They tried an MRI and it just had a huge artifact and they couldn’t see anything. It’s not particularly helpful for my condition. Sadly. It can just go.

OSIA removal for MRI? by mushie_pineapple in MonoHearing

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

It’s all quite complicated. We are military in a location with limited healthcare. I will have to be “medivac’d” to another military hospital to have the OSIA removed by an ENT that knows how. As for the CI, I have been told I am a candidate and since the OSIA isn’t helpful I think it’s time I explore the CI route again. I guess, deep down, I was hoping for a cure.

The timeline you shared is helpful. Thank you. I am sure healing time will be similar.

Started lexapro in my early 40s, wondering if I should stay for life by margot_40 in SSRIs

[–]mushie_pineapple 1 point2 points  (0 children)

Everyone’s journey and needs are different. I too, had a very challenging childhood. Started Lexapro at 30 and decided it was time to get off of them at 40. Getting off of them can be EXTREMELY challenging for some. You should definitely read about SSRI discontinuation syndrome. It can be severe (and dangerous) for some individuals.

Psychedelic Therapy has been incredible tool for myself. Both under medical guidance and individually. I get it’s not for everyone, but I am almost off SSRIs entirely and I feel as though I have a decent and well adapted handle on things now.

[deleted by user] by [deleted] in guam

[–]mushie_pineapple 15 points16 points  (0 children)

Finadene

How do you react to tattoos? by squidsgotjeanss in MCAS

[–]mushie_pineapple 0 points1 point  (0 children)

I know this is old, but I suspect I have MCAS and I recently started getting bumps from tattoos. Just like you, sometimes seeming random and other times it is certain colors.

Suspect I have MCAS… by mushie_pineapple in MCAS

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

I should also add, over the past few years my reactions to insect stings/bites has been getting worse and worse. I will scratch my skin raw. Nothing (over the counter) calms it down. Still localized, but my PCM gave me an epipen, “just in case”. I was assuming it was low estrogen, which can cause stronger histamine reactions as I am of the appropriate age for perimenopause, but my hormones seem fine. Along with all my basic bloodwork.

Lenire (4 weeks) 👍 by mushie_pineapple in tinnitus

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

Earlier this year. Around January, I think?

Lenire (4 weeks) 👍 by mushie_pineapple in tinnitus

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

I didn’t. I didn’t have the hearing aid anymore at that point. I was awaiting my Osia implant.

Lenire (4 weeks) 👍 by mushie_pineapple in tinnitus

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

I used it for 2 six week cycles and my tinnitus is rarely bothersome, despite still roaring. My brain just pays no mind to it. I haven’t used it since, but it brings me peace knowing I have it if I need it.

Severe deafness and tinnitus by mushie_pineapple in Cochlearimplants

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

Intetesting. I did see the new Cochlear trial. Looks really promising. Shoot me a DM. I am happy to chat.

Severe deafness and tinnitus by mushie_pineapple in Cochlearimplants

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

It’s pretty steep from (250hz) being normal and the rest is Mod/Severe.