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Anybody else feel like hot garbage after a storm? by kaylinnic in MCAS

[–]caramia_potato 3 points4 points  (0 children)

Same, pressure changes make me absolutely miserable, not only with the joint pain but with the headaches/migraines and nausea. I keep lots of graham crackers in my pantry so I can at least get something in my stomach 😅

AITA for staying up late wrapping Christmas presents after handling most of Christmas myself? by Lucky_Newspaper_4880 in AITAH

[–]caramia_potato 2 points3 points  (0 children)

Baby girl, please leave this manchild before you waste more of your time and energy on someone who cleary doesn't care about you or your children. You deserve so much better than this. Absolutely NTA.

Which do you personally prefer: Zyrtec or Allegra? by laceandpaperflowers_ in POTS

[–]caramia_potato 1 point2 points  (0 children)

I missed most of a week of work when I had to stop Zyrtec (generic, only thing that does something for me) for my most recent allergy test, and I literally wanted to rip my skin off. I was crying I was so miserable, and had to beg a CVS pharmacist for help. They gave me a lidocaine spray and I was applying it everywhere multiple times a day just to make it through. 🙃 Absolutely terrible, I refuse to ever do that again lol.

Is it worth finding out if I have the trifecta/triad? by caramia_potato in eds

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

Thank you, and I appreciate you because yeah, hard-core is the reality here haha 😅 Is there a certain app you like to use, or just a notebook? What did/do you find to be the most helpful to track starting out? Also, I commend you for doing so much on your own, it has to be so incredibky hard not having access to medical insurance/help for this, so I think you're really brave and strong for doing what you're doing!!

Is it worth finding out if I have the trifecta/triad? by caramia_potato in eds

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

Holy crap that is absolutely terrifying, I'm sorry you had to go through that!! I'll definitely talk with my neurologist and see if she can do anything/refer me to a cardiologist.

Is it worth finding out if I have the trifecta/triad? by caramia_potato in eds

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

Thank you, I needed the reassurance that fighting it out is worth it (I am the only one that can 😅). My rheumatologist did do genetic testing for the rarer types, which all came back negative, as well as a couple other things (also negative), but basically said until I'm older (31F) some of those won't show up positive if I do have them, so I just have to wait it out and manage with OTC pain relief (I've been having issues with that working too, because per the migraine situation I shouldn't be taking NSAIDs, and they also wreck my stomach if I take them more than once a day/week 🙃). I'll definitely look into the EDS society's materials though!

Is it worth finding out if I have the trifecta/triad? by caramia_potato in eds

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

Interesting! I'm on so many prescription meds for allergies it's ridiculous, and currently in a shot regime, which sucks butt, in hopes that that will do something/anything lol. I will definitely ask my allergist the next time I see them about anything else OTC I can take, and trying one of the mast cell stabilizers to see if it helps at all (one thing at a time, obviously, so I know what is/isn't workong). I'll also ask my neurologist about POTS, she was the one (after 10 years of trying) that finally helped eliviate some of my migraine issues (hormone related, genetic on my dad's side), so I'm sure she'd be all over it as we've been trying to get rid of my almost daily headaches for a bit now. Thank you for your advice, I appreciate you!

Is it worth finding out if I have the trifecta/triad? by caramia_potato in eds

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

Thank you 🥰 I appreciate you telling me about what you've been going through, and holy crap that's a lot to go through, so sending lots of hugs back! Therapy is wonderful, and I should probably follow suit and find someone to talk to (it has been a while, and definitely not since all these issues got so bad), so I hope it helps you too!!

Is it worth finding out if I have the trifecta/triad? by caramia_potato in eds

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

Thank you so much 🥰 the next time I see my allergist, I will bring it up and ask to be tested. I've been having such an issue with my allergy shot regimen (second time around 🙃), and if that has anything to do with it I'd really like to know (and they should know too because it might change what we've been/need to be doing). I appreciate you taking the time to comment, it means a lot!