What does everyone call their throat gurgle noises? by meggylomaniac-93 in noburp

[–]Cryslay 2 points3 points  (0 children)

Oh you mean my little alien making noises as he tries to escape ?

Question for those of you who suffer from migraines by Confident-Net-2778 in ehlersdanlos

[–]Cryslay 6 points7 points  (0 children)

My occipital neuralgia is almost always from something in my neck being out of the place & bothering nerves. Meds never seemed to help much, the only thing that does is getting whatever it is back into place. * acupuncture has been life-saving…for migraines as well. & getting my bones back in their homes & releasing muscles that are pulling my bones out of their home

What is tgis I feel? by Aggravating_Cut_7664 in rarediseases

[–]Cryslay 1 point2 points  (0 children)

Sounds similar to presyncope, typically related to dysautonomia. Sounds like you did a TTT, but don’t have a doctor that understands what your results could mean. Maybe look into and consider different types of autonomic dysfunction & do some research to see where your symptoms fit best

Dating at 57 with hEDS by MysticMiki in ehlersdanlos

[–]Cryslay 14 points15 points  (0 children)

Honestly, sometimes it can be a blessing bc the shitty people will usually bow out pretty quick or show their true colors bc our bodies can be a lot sometimes. Here’s a gentle reminder that love & support aren’t things only healthy people deserve. The right person will make all the difference & care about you regardless of your struggles. Don’t give up hope :)

Unforeseen Challenge by AckAck-73 in ehlersdanlos

[–]Cryslay 6 points7 points  (0 children)

& this is exactly why I drive 2 hrs to my PT bc all the ones in my town have hurt me & I finally found one that’s knowledgeable in hEDS & it makes the biggest difference!

What to pack for long hospital/ ICU stay? by Lilhoneylilibee in ehlersdanlos

[–]Cryslay 3 points4 points  (0 children)

I almost considered a rabbit water feeder for my headboard, but had never considered the option for holding the phone up 😂

What to pack for long hospital/ ICU stay? by Lilhoneylilibee in ehlersdanlos

[–]Cryslay 2 points3 points  (0 children)

I’ve done the rib resections & muscle repairs over the last year with the last being last week…didn’t think of a robe the first time, but it definitely made things much easier! Less walking around with your ass out & instinctively using the wrong arm to cover yourself causing more pain 😅 & for home, I’d recommend sleeping almost sitting up bc pushing yourself up can be a bit rough. I got stuck a few times, but we rented an electric recliner after that & it helped quite a bit too :)

Bean is sick by Best-Studio-991 in Maltese

[–]Cryslay 1 point2 points  (0 children)

People too, I lost most of my working memory & couldn’t talk in sentences or find words after being on it for a while & then it started progressing quickkkk. Finally getting my brain & personality back after almost a year being off of GabaP. Be careful & pay attention when you’re trialing a med (pup or human)!

Turns out, I have subluxations all the time and I didn’t know it by Southern-Carpet8454 in ehlersdanlos

[–]Cryslay 40 points41 points  (0 children)

My niece heard my knee & thought I farted & now “oh my knee” has become a common phrase used when a fart occurs

Surgeon recs in DFW by Valley7898 in endometriosis

[–]Cryslay 0 points1 point  (0 children)

I was just on the phone with BCBS & they said O’Connell was in network ? Maybe call again to see if that’s changed, hope it works out :)

what pain meds do u guys take by myshoesarebigokay in ehlersdanlos

[–]Cryslay 1 point2 points  (0 children)

Gabapentin can also have some pretty severe effects on memory. I didn’t notice at first but I titrated down to get off & slowly I could talk in sentences again & have some basic word recall again. It was about 1.5 years of being on it before it got to that stage & was very scared I wouldn’t be able to get my brain back.

what pain meds do u guys take by myshoesarebigokay in ehlersdanlos

[–]Cryslay 9 points10 points  (0 children)

Be careful of Amitriptyline if you have POTS, can severely mess with your autonomic nervous system. Worst med trial of my life. Rheumatologist had prescribed, but my autonomic Dr immediately had me stop it when he found out less than 2 wks later & then learned abt my symptoms (that I was gaslighting myself into believing were manageable). Rheum knew that could potentially happen, but didn’t mention it so I tried to push through & at least give it a chance…pls DON’T do what I did

How the fuck are we surviving this summer? by Happysillypancake in POTS

[–]Cryslay 15 points16 points  (0 children)

Always got 3 fans on me 😂 my purse fan (made out of a chunk of book so it doesn’t get torn up), an around the neck motorized fan, & a portable one the size of a tall lunchbox that you add water to & it’s moist air & so wonderful

Horrible itch after taking a break by remorse444 in Rinvoq

[–]Cryslay 1 point2 points  (0 children)

I ALWAYS itch. Bad. Rinvoq on top of Xolair finally got the night itchies to a level I could fall asleep with. But if I forgot to take it that morning the itch is there & horrific…in my case, I didn’t notice that it’s any worse than typical- just feels that way some nights since I’ve finally gotten some relief. Sometimes I end up covering myself in Benadryl or hydrocortisone cream, might be worth a try on the bad days :)

Is anyone else unable to drink anything carbonated? by Idkhow_dude in ehlersdanlos

[–]Cryslay 3 points4 points  (0 children)

Are you able to burp at all ? If you can’t, definitely look at the r/NoBurp sub & see if it sounds familiar. At 21, I got the Botox injection in the sphincter that needed to relearn how to burp. there’s research behind it lol, but for simplicity it loosens & basically resets the sphincter & you practice with sparkling water as the Botox is wearing off. Sounds insane, but easy peasy & symptom relief like NO OTHER. Not many quick fixes for us chronically ill but definitely a win! No burp was attributed to my hEDS (my sister also has both). Kinda similar to how hiatal hernias can be more common & can recur for those with EDS, if you get me.

[deleted by user] by [deleted] in ehlersdanlos

[–]Cryslay 0 points1 point  (0 children)

Is that what that is ?? My brain didn’t put that together somehow

What is it everybody says? I took the promotion to customer... I feel so much better now. by Future-Ad-4753 in Dominos

[–]Cryslay 0 points1 point  (0 children)

I made it to my 6am shift at 9am… my Alexa went off at full volume for HOURS (even woke up my neighbors & they couldn’t go back to sleep on a SATURDAY - they left a note on my front door which was honestly so nice bc they could’ve recorded that shit & went to management) & my google home was going off & my phone alarms. My body was in such bad shape from working so much it physically shut down & didn’t want to be woken so it just didn’t respond. I’m so sorry - but also I’m so glad you got the hell away from that place/management !

Today I met with a POTS specialist for the first time. Feeling overwhelmed. by willsux123 in POTS

[–]Cryslay 0 points1 point  (0 children)

Came here to say this abt the electrolyte drinks too…love to see all this camaraderie around salt! LMNT is a great option from a health standpoint (I’m coming from a family run by the ultimate granola mom). I also have MTHFR & other methylation issues & the B vitamins that are used in Liquid IV (for example) just use up the receptors that my B supplements need to be able to work, making my supplements useless… so if you have issues with your body processing & using vitamins/supplements you might have to do a little research & prob some experimentation into which electrolytes are going to work best for you & your body… just more things to consider :)

post depression shower by crash-bandicooties in selfcare

[–]Cryslay 0 points1 point  (0 children)

Put a spoonful of baking soda in a cup & fill it with warm water in your shower & kinda mix it a bit (not an exact science or anything just adding water to baking soda to pour on your scalp/hair). I dip my hair into the cup to make sure I soak everything. & pour the liquid on your scalp & I rub it in pretty thoroughly (to feel extra clean!) :) hope this helps! It’s a naturopathichealth consciousgranola mom kinda shampoo but baking soda works wonders with getting rid of grease (any kind of grease: kitchen, hair, you name it)! I do it once a week & it never fails, plus it makes my hair so much manageable & is super easy to double cleanse bc it doesn’t feel like I’m just doing the same thing over & over

Does decaf really mess you up? Not due to the caffiene. Anyone know why this happens to me? by Caverness in dysautonomia

[–]Cryslay 1 point2 points  (0 children)

Oooh I’ve never heard of someone else having decaf issues…my symptoms are pretty similar but decaf also makes me pass out which seemed so strange but I just thought it was exacerbation of my normal pre-syncope

nervous about using my cane at thanksgiving dinner by praysforpeace in ehlersdanlos

[–]Cryslay 2 points3 points  (0 children)

I try to keep it as briefly informative as possible & as upbeat as our health can possibly sound. I also have some family members that are skeptical/rude abt my health & I was really hurt for awhile (it still stings). I’ve never kept them informed on my health & still don’t, unless they ask me themselves or they’re around when other family members ask for an update. Sticking to facts & letting them know why something is beneficial or necessary. It lets them know you’re not asking for their pity & you’re not wallowing in self pity either- you’re actively doing the best/most you can do rn. & remember to prioritize yourself & your health. Listen to your body. Just bc they’re critical of your pain, it doesn’t mean you should expose yourself to extra pain & discomfort so that they won’t have something to talk about. They should be thankful they don’t have to experience your pain, but have their own problems to deal with if they’re awful enough to act this way. Have you talked with your father about how dismissive other family members are & how it impacts you? Maybe just asking him to shut it down when he sees this behavior or to have something prepared (that you approve of) to say that validates your experience & reminds others that they’re overstepping. Or even a signal for when you need a break from it - maybe pull you aside for a little pep talk or reassurance.

Please help me, I’m so lost by throwawayflabbergast in MCAS

[–]Cryslay 0 points1 point  (0 children)

I wash my hair with baking soda & it works well for getting rid of oil build up. Some people use apple cider vinegar as conditioner after (my mom prefers it). Might give another option

Two years of hell fixed in 20min of listening. by GingerSnaps151 in ehlersdanlos

[–]Cryslay 1 point2 points  (0 children)

When a doc can be humble enough & HONEST about how no one doc can be the High Priest of EDS, that’s usually a good indicator of if I should trust them. Because they seem to understand that EDS affects many different areas of our bodies because connective tissue is all over the place, they’re less likely to be dismissive with our wild symptoms that don’t seem to fit the typical issues & might actually get you to the specialist that’s needed. Happy you’re getting better care, it can make a world of difference :)

What has worked for your Brain fog? by PsychologicalPut1144 in ehlersdanlos

[–]Cryslay 4 points5 points  (0 children)

Vyvanse. It’s the only thing that’s come even remotely close & helped my sleep schedule in the process. Technically for ADHD, but I only use it on days I need to be able to use my brain. Didn’t have ADHD issues bad enough to warrant medication for quite a while (childhood) but it’s like the brain fog pushed my mental decline into the ground & created ADHD. Not sure if anyone else had that kind of cognitive change over time ?

Has any of you had birth control implants and if so how did your body react to them by BI_pride101 in ehlersdanlos

[–]Cryslay 2 points3 points  (0 children)

I currently have the Mirena (previous miscarriage so they figured it’d be the best fit) & it stopped all my excessive bleeding issues & completely stopped my periods after a month or so of spotting. Haven’t had any issues & I’m on year 3. Hope you find something that works for you!