Forum Replies Created
December 22, 2013 at 1:13 pm in reply to: Group of girls with EDS Hypermobility experiencing severe muscle spasms and contractions #4669
I’m perimenopausal (still have cycle) and estrogen dominant, HEDS/POTS.
I have the bladder issues, tight ribs, random muscle spasms, adult acne and one sided erect, painful sensitive nipple for no reason. Nights are worse, especially bladder.
Ask your gals if their insomnia is worse or face pimples arrived abruptly (my skin was always clear before) or if they have gained thigh/hip/belly weight for no apparent reason. Those are indicative as well. (I have had thumb essential tremor since my teens.)
How’s your potassium?
CarolineDecember 13, 2013 at 4:58 pm in reply to: EDS related? #4656
Welcome to EDS, Malapupa – it’s actually great to hear from someone diagnosed at your age, it means you’ve got at least one doctor who thinks outside the box and connected the dots for you. I agree with everything that the other member ‘Eliza and Jordan’ posted in her reply to you, and your experience mimics mine when I was your age, but I wasn’t diagnosed until I was 37, and I’m hypermobile EDS and POTS. I was fainting a lot in my teens, it got pushed off as attention-seeking-faking fainting, pretty disheartening. You may go through periods of time when POTS symptoms get bad and then better, ups and downs. Your symptoms sound very POTS-ish, talk to your doc about having a tilt table test so you can try some meds for POTS. It sure beats having ‘accidental-naps’ under your coffee table because you stood up too fast.
PS: You will be teaching doctors about EDS for the rest of your life, learn everything you can about EDS, POTS, etc. You will have to really bully some doctors sometimes, get good at advocating for yourself, speak up and get heard. Best of luck.November 30, 2013 at 2:07 pm in reply to: Pupil abnormalities? #4633
When they’re really fluctuating, take a close in ‘selfie’ of your eyes to show your doctors if your pupils seem pretty normal sometimes. I take pics of dislocated joints, keep data on sleep and BP readings. Any evidence that will back up our bizarre symptoms goes a long way – especially when you have to see a new MD and you look fine. We have some fantastical stories for these skeptical people, and objective data helps them move past the ‘drug-seeker? malingerer? hypochondriac?’ thing they do, to be able really LISTEN and BELIEVE with EMPATHY. Any MD not truly understanding your personal EDS experience, will never be sufficiently motivated to really help.November 30, 2013 at 1:27 pm in reply to: Pupil abnormalities? #4632
Me too. My left is always bigger, sometimes much. Am on beta blockers for POTS. During any dysautonomic flare, both get bigger, but the left is always my big one. I get cluster migraines on the left (always left), and those make the left pupil look nearly blown out it’s so big. The clusters also give me a speech impediment I don’t usually have, and make left eye tear up-I don’t usually have enough tears to cry, despite punctal plugs. Nose gets stuffy, also left eye gets puffy just above the lid, like a shiner. With the weird speech, it appears very much that I’m having a stroke or TIA (ruled out). No true aura, just an early warning when normal lamplight turns into uncomfortable glare. Pupils diff sizes long as I can remember, the cluster migraines are a new thing. I also can’t tolerate fast flashing lights at night, like police light strobes. Triptan meds help.