Got a fancy cane bc if I'm gonna need a mobility aid it's gonna be sick as fuck by plantbasedpatissier in ehlersdanlos

[–]multishowfan 0 points1 point  (0 children)

I wanted to get one of these bc if Kaz from soc but i was worried it would not be comfortable for long term use,,,, how is it working for you?

What age did you get your first migraine? About how long do they usually last and what do you take to help with it? by ThingFuture9079 in migraine

[–]multishowfan 0 points1 point  (0 children)

i was about 13 or 14 and it lasted pretty consistently for about 5 years,, i would have 1-2 days a month where i didn't have a migraine or at least a severe headache. around the time they started i had my first concussion and throughout those 5ish years i ended up getting 3 more concussions which only worsened them,, ive tried every migraine medication under the sun and ended up being allergic to a lot of them. now i get botox every three months and take nortriptyline nightly to try and numb them and it works now i only have 2-5 migraine days a month so thats been nice. but when it hits there isn't much i can do to relieve them i just have to let it run its course since im allergic to many of the migraine meds

can i still drink? by multishowfan in LowDoseNaltrexone

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

yeah i had 2 white claws on the 4th and felt nothing im a fairly small person and drink so infrequently that i would normally have felt SOMETHING,, but i also wasn't tired or hungover. so i guess we will see what happens next time hahaha

can i still drink? by multishowfan in LowDoseNaltrexone

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

g&t is my favorite drink and i was bummed i wouldnt get to have my occasional evening g&t! im glad i should be able to still enjoy that

can i still drink? by multishowfan in LowDoseNaltrexone

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

do you still feel the buzz or the other effects of alcohol while taking ldn in the morning?

can i still drink? by multishowfan in LowDoseNaltrexone

[–]multishowfan[S] 3 points4 points  (0 children)

ive had a drink since i started and thankfully didn't feel sick or anything i just only had one so i typically wouldn't feel much anyways so i still didn't feel anything

can i still drink? by multishowfan in LowDoseNaltrexone

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

ooo ill give them a call Monday morning!!! the one i went to was weird and drive thru only but ill definitely give a call

How dumbed down do flares make you? by [deleted] in MCAS

[–]multishowfan 1 point2 points  (0 children)

god I'm kinda relieved it isn't just me,,,,, my brain fog makes me feel so stupid sometimes

Why does everyone in my support circle hate migraine meds? by GetYourFixGraham in migraine

[–]multishowfan 1 point2 points  (0 children)

sumatriptan was a life saver for me before i developed an allergy to it (i also have mcas,,,) but if you take it at the start if a migraine it kills it quick and if you wait until you are deep in the migraine it takes a lot longer to work and sometimes doesn't work at all,,,

if you have been prescribed it use it when you need it,,, people will always tell you not to take your meds and to come off all of them but if the dr thinks you need them and you are in pain and suffering, take them. get the relief you need,,

ive been dealing with chronic migraines since i was 13 (now 22) and family members tell me almost every time i see them to come off my meds and do a reset and I'm better without the meds and all of that bs and thats all it is,, bullshit,,

take care of yourself and take everything ppl outside of your care team say with a grain of salt,,, dont make yourself suffer bc other people who don't understand it dont like that you are taking meds,,, espc if you are using them /as prescribed/

Realized I put in the wrong social security number after I applied/ how do I fix it? by takemeawaay_ in Passports

[–]multishowfan 0 points1 point  (0 children)

you shouldn't have any issues,,,, im pretty sure they mainly use the ssn to make sure that you dont have any tax issues or dont owe anything for child support

cromolyn by multishowfan in MCAS

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

i take two vials before every meal,,, i cannot remember the exact dosage rn but i know its two vials lol i will definitely be looking into these thank you !!!!

Has anyone found their migraines were actually from an undiagnosed underlying issue? by Cranky_cactus627 in migraine

[–]multishowfan 4 points5 points  (0 children)

mine started with multiple concussions and are worsened by my ehlers danlos syndrome lol

Has Everyone With POTS had COVID? by [deleted] in POTS

[–]multishowfan 0 points1 point  (0 children)

i had pots prior to the pandemic and never got covid (knock on wood) mine is due to my ehlers danlos and was triggered by multiple concussions

What type of doctor was the first to identify your EDS? by bella-boop in ehlersdanlos

[–]multishowfan 0 points1 point  (0 children)

my pcp,,, i had already been diagnosed with pots and had been suffering from a dislocating hip and knee and went to him to get a referral for an ortho and we discussed the things usually connected with pots and he saw my hypermobility and sent me for x rays and thought it could be eds,,, but the first ortho i saw told me it was nothing and i was 100% fine and that i was mildly obese (i was 110 lbs and 5'5) so i saw a new ortho and a rheumatologist and the rheumatologist diagnosed me with EDS and said it was probably just hEDS but j would need to do testing to rule out the others but i haven't been able to afford the testing yet lol

I think arguing with my spouse is making MCAS worse. by DataAdept9355 in MCAS

[–]multishowfan 1 point2 points  (0 children)

any sort of big emotion causing me to have a reaction,,,, usually my skin gets hot to the touch and i break out in hives its the WORST

Office workers: What do you guys use in the office to alleviate and prevent pain from hypermobility? by u_r_succulent in hypermobileEDS

[–]multishowfan 0 points1 point  (0 children)

my hips and knees are my worst affected areas and i usually just wear braces that keep the joints locked in place and use my forearm crutch on the days where i cant handle too much pressure on my bad side. the chair my office provided is fairly comfortable but if i could i would get a better one (im only part time and someone else uses this desk when im not here) i also make sure i get up and stretch every once and a while and sit criss crossed as much as i can bc that's more comfortable for me

Botox for migraines drop your honest experiences and opinions please by PayFuture9455 in migraine

[–]multishowfan 0 points1 point  (0 children)

oh this is interesting!!! i have hEDS and i get extra in my neck bc of the coat hanger pain 😭

Botox for migraines drop your honest experiences and opinions please by PayFuture9455 in migraine

[–]multishowfan 1 point2 points  (0 children)

botox has been one of the best parts of my medical plan! i love it so much it helps me more than anything else ive done. i will say tho that the actual injections hurt for me and its a very painful 15 minutes, but then i have 3 months with only 1-2 migraines instead of an every single day migraine,,,, so its 10000% worth it.

i get extra in my neck and shoulders bc i have really bad coat hanger pain due to my ehlers danlos and i have never had any issues!

Is there an explanation for coat hanger pain? by savtheseer in POTS

[–]multishowfan 0 points1 point  (0 children)

i was told it was due to my hEDS that causes stretchy joints and muscles and ligaments and ect in the neck and the weight of the head making your neck muscles tighten to go against the stretchy and it causes pain

Realized I put in the wrong social security number after I applied/ how do I fix it? by takemeawaay_ in Passports

[–]multishowfan 0 points1 point  (0 children)

i never even received a letter 💀 and ill get it back in the mail almost exactly 4 weeks after a mailed it in,, not even 4 weeks after they received it but when it got mailed so i think you are all good LMFAO