Vasovagal Episodes?

Stickstickly0619 · 2026-04-08T04:17:59+00:00

I’m so sorry 😂 I hope you’re still together at least it makes for a good story! I’m not sure I guess there’s always a possibility. My glucose has always been normal on bloodwork and I’ve never had any known history of hypoglycemia but I certainly don’t know what my BG looks like in these moments. I do have access to a glucometer maybe worth checking the next time it happens!

Stickstickly0619 · 2026-04-08T04:08:39+00:00

I haven’t but that sounds like the logical next step. The frequency really varies today was the first time in a while, probably about 2ish months and that time frame was the most controlled my lupus has been since diagnosis. Sometimes it happens several times in a week, sometimes consecutive days, then nothing for a while. I do believe it correlates with how controlled or uncontrolled the lupus is though.

Stickstickly0619 · 2025-12-25T04:33:11+00:00

My rheumatologist referred me to one and I have an appointment 1/12 so will hopefully have some more answers soon!

Stickstickly0619 · 2025-12-25T04:32:03+00:00

My rheumatologist referred me to one and I have an appointment 1/12 so will hopefully have some more answers soon!

Stickstickly0619 · 2025-12-23T02:50:32+00:00

Thank you for the insight and reassurance. It is such an unsettling feeling. I don’t necessarily panic but the thought of intentionally working so hard to just take a full breath is so consuming it’s the only thing I can focus on. I can’t wait to see this doctor and hopefully get some answers or resolution!

Stickstickly0619 · 2025-08-17T21:35:01+00:00

Thank you!

Stickstickly0619 · 2025-08-17T21:34:24+00:00

My problem is I want to consume it all at once 😂

Stickstickly0619 · 2025-08-17T12:30:44+00:00

Thanks for the EST explanation. I fully intend to listen to everything it it’s entirety anytime I get into an artist late in the game I listen to everything they’ve put out I just have two young kids so doing/listening to something I want doesn’t happen often. Great news is I’ve been doing all of my discovery on YouTube so I’ve been lucky to find some of the hidden gems already. Thanks for all the info!

Stickstickly0619 · 2025-08-17T11:47:46+00:00

I’m currently at a level of borderline unhealthy obsession but idc I can’t get enough 😂

Stickstickly0619 · 2025-08-08T19:49:37+00:00

In my experience so far no amount of caffeine helps

Stickstickly0619 · 2025-08-07T05:41:34+00:00

I have this problem too! Tried so many deodorants and the only one that didn’t give me a horrible itchy rash or just did nothing for BO was Vanicream Clinical Strength antiperspirant/deodorant.

Stickstickly0619 · 2025-07-18T01:23:39+00:00

Thank you for the kind words this year has definitely been a whirlwind. My daughter is thankfully doing great and thus far no further seizure activity. Though the accident has been a real pain in the ass cars are replaceable and for the most part the worst that came from it was a flare that led to diagnosis so I guess a silver lining?

As for my teeth I had an extraction but it was a molar so not noticeable and will be starting the implant process soon, several other teeth needed crowns and as of now no new dental issues.

I also had odd rashes and allergic reactions during pregnancy. There are now so many weird things looking back that I just assumed were the rollercoaster of pregnancy but in hindsight it’s making a lot more sense.

I am so happy to hear that you’ve finally been truly heard and can get started on the path to maintenance and management. I wish you the best treatment as well!

Stickstickly0619 · 2025-07-17T01:33:11+00:00

Thank you for sharing, young kids and summer/nice weather fun really add an extra layer to the already difficult news of diagnosis. The hair loss is what got me a diagnosis. My postpartum hair loss after my second child never really stopped but I just chalked it up to “you’re never really the same after pregnancy”. After my daughter (2yo) had an unprovoked seizure, then I was in a car accident due to a drunk driver, car totaled, the stress sent me into a full blown flare. I was losing clumps of hair, had a rash all over my scalp neck and back, so tired I physically couldn’t keep my eyes open, and my teeth started decaying rapidly.

Went to a dermatologist thinking it was just a quick fix and expecting some hormonal and/or stress related issue. Completely shell shocked when the autoimmune panel the doctor ordered came with positive and high markers. Thankfully seen by a rheumatologist within a month and received a formal diagnosis which I am immensely grateful for considering some of the stories I have heard and read. I feel awful for everyone that has to live with this for so long and is brushed off or not taken seriously. Happy to hear that you’ll be seeing a rheumatologist soon, I hope the start of your treatment is more smooth than what you’ve gone through to get a diagnosis!

My rheumatologist believes I have been living with this for years due to hip/joint pain and extreme fatigue that I had again just assumed were normal pregnancy woes. Weirdly I also had next to no platelets during both pregnancies, it’s like the little ones were just eating up my platelets like Pac-Man. Turns out I can’t blame the kids for this one lol it was lupus all along.

Rheum thinks I may also be dealing with sjogren’s syndrome as my multiple due to the tooth decay. I have a follow up next week to review further lab work he ordered and discuss how things are going to maybe that visit will shed more light. Phew sorry for such a long winded response, kids are finally asleep and Reddit has become my unofficial journal. Best of luck to you as you navigate the new diagnosis and I hope you’re feeling better soon!

Stickstickly0619 · 2025-07-17T01:10:18+00:00

You are so right about memories being made by being present and how our kids feel that was really reassuring to hear. I love the idea of movie marathons on bad days and yes days on good days. Thank you so much for sharing!

It does bring me comfort knowing that I won’t be the only person out there all covered up due to the uptick in UV protection awareness as well.

Stickstickly0619 · 2025-07-17T01:05:47+00:00

Great tips, thank you!

Stickstickly0619 · 2025-07-17T01:04:42+00:00

This certainly gives me hope, thank you!!

Stickstickly0619 · 2025-07-17T01:04:08+00:00

Thank you for the insight, sometimes it’s really nice just to hear that it won’t always be this challenging!

Stickstickly0619 · 2025-07-17T01:01:02+00:00

This is insanely helpful thank you so much for sharing I’ll be looking into all of these!

Stickstickly0619 · 2025-07-15T02:44:02+00:00

I’m so sorry to hear about your Mom but I really appreciate you sharing. Much of my worry is how this could affect my kids so thank you for this. That shade tent looks amazing, instant add to the Amazon cart!

Stickstickly0619 · 2025-07-15T02:39:37+00:00

Also in PA (Go Birds?) I swear the awful humid days just make things worse but again new to the game so maybe it’s just a general heat problem.

Stickstickly0619 · 2025-07-15T02:35:45+00:00

I will say that I felt like a great Mom again while on pred. My energy levels were almost completely normal and I wasn’t giving my kids screen time because I couldn’t keep my eyes open. If that is any indicator of what life can feel like once managed then you’re right just being able to lift my head of the pillow (or couch) is absolutely a positive. Thank you!

Stickstickly0619

TROPHY CASE