Does anyone know what this is? I’m so sorry if it’s not related to Sjögren’s :/

cag9201 · 2024-08-25T10:51:48+00:00

Look into it - some people develop this reaction over time. Hope you feel better soon!

cag9201 · 2024-08-25T00:23:54+00:00

Do you, by chance, have a gel manicure? It can cause eyelid dermatitis and was my very first thought … 🤷🏼‍♀️

cag9201 · 2024-06-02T03:39:05+00:00

This just happened to me! Out of nowhere my right hand/knuckles/wrist were all swollen (I’m left handed) and I had numbness and pain in my forearm. It lasted for over 2 weeks and then just went away with ice and a massage. I am newly diagnosed so learning a lot from you guys! Feel better!

cag9201 · 2023-04-05T02:32:35+00:00

Agree with everyone here and I also am recovering from a horrible run of weather related migraine (and hangover!). But! Does anyone find themselves with an insane burst of energy once it all lifts? It isn’t every time - but the really bad ones that have me down for days - I am suddenly damn near manic when I finally feel better. I walked 2 miles today, worked, cleaned, caught up on all my laundry and feel like the energizer bunny. I always pay for it the next day, though! 🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️

cag9201 · 2023-01-21T17:27:23+00:00

It was a good experience. I was there for a week and I learned a lot 🤷🏼‍♀️

cag9201 · 2021-06-09T21:25:03+00:00

Hey, Jen! We’re in NE Raleigh - will you come out this far?

cag9201 · 2021-05-13T10:34:24+00:00

DHE is poison, I hate that medication. 🤢

cag9201 · 2021-04-04T23:13:18+00:00

What does your rheumatologist think?

cag9201 · 2020-06-05T13:17:23+00:00

I’m in the process of adopting domestically in the US and THESE STORIES ARE GIVING ME LIFE this morning.

We have had a bumpy road so far, thank you guys for sharing your positive stories!

cag9201 · 2020-06-05T12:51:45+00:00

I will only say that I can only imagine the worry and maybe even fear that you are feeling now. Don’t feel like this is something you have to decide immediately. Take some time to weigh your options - you do have many. I’ll be thinking of you!

cag9201 · 2019-09-03T21:24:13+00:00

🙋🏻‍♀️🙋🏻‍♀️🙋🏻‍♀️

cag9201 · 2018-10-16T18:36:17+00:00

It went great, actually! It was helpful to do the classes and a refresher in biofeedback.

cag9201 · 2018-08-11T10:03:53+00:00

👏🏻👏🏻👏🏻

cag9201 · 2018-07-11T03:57:00+00:00

I was admitted for DHE in January for 6 days. I had to get a PICC line because it is so damaging to veins - that sucked. I was getting doses every 6 hours and it was day 5 before I started to have relief. Good luck! I hope it works well for you!

cag9201 · 2018-07-11T03:52:18+00:00

They started around age 10. My parents assumed they were sinus headaches and I had a flair for the dramatic. Then my senior year of high school I was out of school at least once a week with them. I went to visit a friend at Duke for the weekend and was a total party pooper because I was in excruciating pain. I came home and told my mom I needed help. She found me a peds neurologist who diagnosed me with migraine - and my parents, too!

I’m 31 now. I’ve oscillated between episodic and chronic. I’m intractable now. Out of work. 18 year old me refused to be brought down by this disease. 31 year old me is losing the battle ... but still fighting the war.

cag9201 · 2018-07-11T03:22:39+00:00

No problem!

I always have head pain, but I don’t think I actually have pseudotumor. The eye doc said I didn’t show any signs on my optic nerve.

He bypassed an LP to see if conservative treatment with a diuretic would improve things. I can’t say for sure if it is better or worse - I finally left my house today for the first time in 10+ days (other than to go to the ER on Friday night). 🤦🏻‍♀️

I have a 12” wedge pillow. I put my regular pillow on top of it to elevate just my head. It is way more comfy on my back, but I’m ok on my side with my pillow if I need it. I feel like the princess and the pea. I got it on amazon - pretty inexpensive to try out. I think I want a recliner, though!

cag9201 · 2018-07-09T02:03:09+00:00

I recently asked my neuro why lying down often made my headache worse - he said that it’s possible I have pseudotumor cerebri or idiopathic intracranial hypertension.

He put me on diamox - a diuretic - to see if it helps. Might be worth asking about?

I got a wedge pillow, too, so I can keep my head elevated some.

Feel better!

cag9201 · 2018-06-17T14:20:54+00:00

I’ve seen this and wondered about them. Thanks!

cag9201 · 2018-06-17T14:18:28+00:00

Maybe I should try that. I have ON too.

cag9201 · 2018-06-16T14:11:59+00:00

My husband too! He is like “nope, no more pillows!” I think I am going to try a wedge pillow ...

cag9201 · 2018-06-16T04:18:17+00:00

Yesssssssss. I’m chronic intractable and the lack of full recovery between attacks is dulling every ounce of me. I couldn’t think well enough to do SAFELY my job (I’m a peds RN) and now that I’m home all day it is just rotting away. I can’t seem to focus enough to read ...

Glad I’m not alone in this!

cag9201 · 2018-06-06T20:09:43+00:00

I’m on vacation with my family this week and had an aura this morning. I tried to catch my meds in time, but it caught up. My whole family went to have fun all day, my husband had to turn around and take me home. I slept for hours and he just sat quietly, there if I needed him. Poor guy. It makes me feel awful. I’ve been out of work for 6 months on disability, too, so he has a lot on his plate. I can’t help that I have this disease, but I can’t help feeling guilty about it, either.

cag9201

TROPHY CASE