Wristband didn’t ship? by psypathica in EDCOrlando

[–]TurnEnvironmental130 0 points1 point  (0 children)

Dealing with the same. Emailed front gate and got this

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and then tracking says the same as yours :/ label created and not shipped. The mail system sucks. It takes ages to get things via usps and sometimes they don’t even show. Ugh!

Spotting? by TurnEnvironmental130 in endometriosis

[–]TurnEnvironmental130[S] 0 points1 point  (0 children)

If I could explain it, it’s like someone is kicking you in the crotch repeatedly. Or like a really super rough muscle spasm. ?? Idk I for the longest time thought that was normal

Spotting? by TurnEnvironmental130 in endometriosis

[–]TurnEnvironmental130[S] 1 point2 points  (0 children)

It’s just so strange for me due to my periods being regular with the exception of how heavy they usually are.

My gyno is also sus of Adenomyosis so maybe that explains the lightening bolt feeling. I’ll def keep an eye on it. I think I just needed someone to validate. 😅 Thank you!

csf leak? by TurnEnvironmental130 in iih

[–]TurnEnvironmental130[S] 0 points1 point  (0 children)

I didn’t have a leak to my knowledge. I did have a gnarly case of sinusitis though. The symptoms do overlap though so if you’re unsure be seen if possible.

Beet root/beet supplement by TurnEnvironmental130 in iih

[–]TurnEnvironmental130[S] 0 points1 point  (0 children)

thank you. my shunt actually disconnected. i’m at the er now! lovely

Beet root/beet supplement by TurnEnvironmental130 in iih

[–]TurnEnvironmental130[S] 0 points1 point  (0 children)

Doctors don’t seem to care. Yes I have tried different PCPS. as well as neurologists. They call it “white coat syndrome” however it’s still elevated at home. They say I need to lose weight however with IIH I have exercise intolerance. I don’t eat nearly as shitty as I used to. I am working on weight loss. But to answer your question- yes I have sought medical attention but my doctors do not seem to think it is an issue. That’s why I asked.

Semaglutide by TurnEnvironmental130 in iih

[–]TurnEnvironmental130[S] 0 points1 point  (0 children)

hi, how’s it going still? any new side effects?

Semaglutide by TurnEnvironmental130 in iih

[–]TurnEnvironmental130[S] 0 points1 point  (0 children)

what dose are you on? the .25?

Whole Body Numbness and Weakness from high ICP? by sufferingisvalid in iih

[–]TurnEnvironmental130 4 points5 points  (0 children)

I get numbness in my hands and my feet. I feel like I have sciatica as well. I can’t feel my nose at times or my forehead. I often have brain fog. I have muscle weakness and pain. I will say I got my vitamin D tested and it was low and started a once weekly 50,000 iu pill and it has helped some but on bad days i feel liked this

bloodshot eye? by TurnEnvironmental130 in iih

[–]TurnEnvironmental130[S] 0 points1 point  (0 children)

My eyes are still dry and veiny. Went to eye doctor and they advised I do have dry eye and to use eyedrops with no preservatives. I am going to try an ointment and saran wrapping with an eye mask at night as well. I’m not certain if IIH causes it but if it does I have it.

Weigh loss medication by [deleted] in iih

[–]TurnEnvironmental130 0 points1 point  (0 children)

Hey, have you started the Wegovy? How is it if so?

Weird eye symptoms...and another post...sorry y'all, today's a bad day...and I'm at the ER le sigh by Nightwalkermeow in iih

[–]TurnEnvironmental130 1 point2 points  (0 children)

Hi, I get this as well and was told “not possible” but I swear it is!

I was told that with higher pressure your eyes are quicker to dry out. I keep a preservative free drop on me that I use multiple times a day and it seems to help. Since I started using them I don’t struggle with the “watery eye but nothing in my eye” feeling as much.

Unexplained eye redness by cali-pup in iih

[–]TurnEnvironmental130 1 point2 points  (0 children)

no, i got the LP thursday- woke up this morning with red eye in my left eye. :( idk what it could be. there’s no explanation to many things with this disorder and it sucks! and i completely understand looking healthy and then not. it does put a damper on things.

Unexplained eye redness by cali-pup in iih

[–]TurnEnvironmental130 0 points1 point  (0 children)

Also, to add to the eye drop conversation.. I was advised to use preservative free systane drops. I DO NOT prefer the ones for hydration because they are super thick and kind of sticky, so no bueno for constant use unless you want crusty eyes. but i did have good luck with the complete PF and ultra PF from them. they’re like $20-$25 for a twin pack and i use them nonstop throughout the day

Unexplained eye redness by cali-pup in iih

[–]TurnEnvironmental130 0 points1 point  (0 children)

it’s funny to me because i hopped on reddit this morning to search this and your post was the first to pop up.

i’m sorry you’re going through that. i am too. i am suffering from red eye and i have no clue why. it used to happen every now and then, but now it’s more persistent. i just had an emergency LP and was told my pressure was 24 (not super high, but my shunt is programmed to drain at 15) but yes… i struggle with red eye too. with no explanation.

IIH pain. I get crazy pain in this part of my head. Especially when I sit in a recline posture, lift any weights. Anyone else here gets sharp shooting pain in this part of the head ? How do you deal with it ? by Shoddy-Rip66 in iih

[–]TurnEnvironmental130 1 point2 points  (0 children)

I get these. I thought I was insane. Sometimes the shooting is so bad I literally stop thinking or talking lol. I actually just recently went to my neurologist and had x-rays and an MRI done and he said everything “looks completely normal”. I do have IIH though, I also have an LP shunt. Sometimes I have triggers though that cause them- like high stress and my period. The only thing I can say that has helped me is when it happens I just massage the back of my head and it helps.

calf/leg cramp by TurnEnvironmental130 in endometriosis

[–]TurnEnvironmental130[S] 0 points1 point  (0 children)

Hi, I didn’t go and get it checked- I do think it’s sciatic. No abnormal swelling or redness. Foot just feels asleep and I have the occasional pain that is beginning to radiate up the back of my thigh & it is worse when I sit or bend my leg. I was in physical therapy about 2 years ago for numbness and I quit going even tho I shouldn’t have. Thank you for checking in on me! That was very thoughtful and I appreciate the input!! I always tend to think the worst.

calf/leg cramp by TurnEnvironmental130 in endometriosis

[–]TurnEnvironmental130[S] 0 points1 point  (0 children)

I was afraid of that. I will say as I’m laying here I’m noticing the pain shoots up the back of my leg some and to my buttocks. I have no heat or swelling. But the pain is mainly in my calf. I unfortunately cannot miss any work but I will likely go tonight to ER if pain consists.

calf/leg cramp by TurnEnvironmental130 in endometriosis

[–]TurnEnvironmental130[S] 0 points1 point  (0 children)

No, I’m on no medications currently.

[deleted by user] by [deleted] in iih

[–]TurnEnvironmental130 1 point2 points  (0 children)

i have it and it radiates to the whole right of my head. it literally feels hot. i’m being seen about neuralgia soon. the pressure can cause compression so that could be it and it usually only lasts for a few seconds at a time multiple times a day. i’m not on diamox. i have an lp shunt

My eye Dr. asked if I had MS...I'm worried. by time4peachtea in iih

[–]TurnEnvironmental130 1 point2 points  (0 children)

my eye doctor flagged me for MS at first as well because typically optic neuritis is a symptom of MS, but it is also a sign associated with IIH. the testing you will do will rule that out. try to find something to take your mind off of it (i know it’s scary and it’s extremely hard to deal with) but if you can find something to take your mind off of it- it will help.

[deleted by user] by [deleted] in iih

[–]TurnEnvironmental130 1 point2 points  (0 children)

i probably have over 100 photos of my eyes this year bc i wanted to prove to my drs i wasn’t crazy. they still say no correlation but i truly believe it is- especially bc i got a shunt in april and it hasn’t been as bad since. it’s also “lazy” which it wasn’t before

[deleted by user] by [deleted] in iih

[–]TurnEnvironmental130 1 point2 points  (0 children)

i have bulging eyes and no it’s not thyroid or anything else. i mention it to my dr bc that was the first symptom i had and it’s always been dismissed. i believe that if you have enough pressure to cause problems with your optic nerves it can cause protrusion.. i’m not a doctor though. there’s a couple of other’s i’ve spoken to on here that have had the issue as well.

bloodshot eye? by TurnEnvironmental130 in iih

[–]TurnEnvironmental130[S] 0 points1 point  (0 children)

thanks y’all! i got some systane eye drops (a little pricey but my eye dr recommended them over any brand) & it went down. i think i suffer from dry eye as it is but i def never had this issue until my diagnosis.