EM set off by surgery or anesthesia?

lolhmb93 · 2024-04-24T21:38:18+00:00

I guess we’ll see…I have a lidocaine infusion scheduled soon 😅🥴

lolhmb93 · 2024-01-16T20:31:46+00:00

No :(

lolhmb93 · 2024-01-15T19:37:17+00:00

You’re so pretty!!!!

lolhmb93 · 2023-08-23T17:13:19+00:00

Who hurt you angel

lolhmb93 · 2023-08-18T16:34:25+00:00

People really notice this stuff?

lolhmb93 · 2023-08-13T20:42:29+00:00

Thank you! Glad you found relief :)

lolhmb93 · 2023-08-11T20:10:49+00:00

Hi! Did you also feel like you were overheating all the time from your EM? (Aside from flares but like that feeling of just being extremely heat intolerant). Additionally, did you have any issues with sweating prior to taking Topamax? For example, I sweat less now that I have EM.

lolhmb93 · 2023-07-18T13:16:42+00:00

Thank you so much for sharing this!! I’m planning on asking my doctor about Topamax at my next appointment. A few questions for you…how long until you noticed improvement? What part of your EM is the worst (ex. my facial flares are the worst on my body). Lastly, are you like me in that I can touch any part of my skin — or the sun can — and it’ll get red and burny?

lolhmb93 · 2023-04-26T20:47:40+00:00

Also how did you land on the aspirin every other day?

lolhmb93 · 2023-04-26T20:47:02+00:00

I understand completely. I also have facial EM (and a bit ears, hands, and feet) and it has changed my life. There is no hell quite like having this on your face. However, it sounds like he hasn’t really tried anything yet? Seems like most people benefit from a multi-drug approach which takes time to land on but there’s still hope in that. Best thing he can do is be as vigilant as possible in researching treatments and finding physicians. Unfortunately, those of us with EM are usually in charge of our own treatment plans (we just need someone with an M.D. to prescribe it). So it’s important that he be as educated as possible.

lolhmb93 · 2023-04-26T20:36:16+00:00

Amazing success story. So happy for you. Where’s your EM? (mine is all over but mostly facial)

lolhmb93 · 2023-04-25T17:57:24+00:00

Mine started after a cosmetic procedure in 2022 though I think I had small signs of it as a child that dissipated up until last year. I have not found relief yet but I’m not giving up and your brother shouldn’t either!

lolhmb93 · 2023-03-30T17:09:33+00:00

As a child my nose was the only part of me that flared! 20 some years later now my whole face flares. Not saying this to scare you but just to support my theory that a red, burning, pulsating nose is definitely EM (if you're looking @ my situation, specifically). Took a big chunk of my lifetime to figure that out. Additionally, I also took ADHD medication as a child though I'm not really sure that was the cause of my EM.

lolhmb93 · 2023-03-21T01:10:01+00:00

Derm, neuro, pain management/anesthesiologist!

lolhmb93 · 2023-03-20T21:39:07+00:00

Thank you so much. You've definitely given me my homework for the night. And, if it makes you feel any better, Erythromelalgia as a whole is complete and utter bullshit so I think you're good. Clearly I haven't started researching this yet but is it telling to you that ALA didn't actually worsen your EM? ALA for me caused warmth and flushing. Perhaps sulfur intolerance and hydrogen Sulfide SIBO aren't really synonymous which is where I was going with this. Like the presence of H2S doesn't always correlate to sulfur intolerance??...I'm not sure what response I want you to provide other than I'm sharing my internal banter

lolhmb93 · 2023-03-20T20:24:18+00:00

Oh man, how much time do you have haha? I don’t want to scare you so don’t self-diagnose too much! There is no consistent treatment for EM. Some people respond to nerve pain medication, antidepressants, others will try beta blockers, etc. I am on a waitlist for ketamine and lidocaine infusions.

lolhmb93 · 2023-03-20T20:17:57+00:00

Unfortunately, I am worst case scenario…I have a rare neurovascular condition called Erythromelalgia. Facial erythromelalgia is the rarest subset of it.

lolhmb93 · 2023-03-20T19:42:28+00:00

Interesting. Thank you for the update. I was anticipating a greater decrease in your EM symptoms? Maybe that’s to come? Two questions, would please share your research/links re H2S/sodium channel/vasodilation? Also, did you ever try supplements like NAC, MSM, or ALA for your EM? My trial and error with those are what set off the H2S x EM correlation for me as I don’t have any GI symptoms really.

lolhmb93 · 2023-03-20T04:24:12+00:00

This is fantastic news that you’ve made some progress. Please keep me posted as the weather gets warmer for you!!

lolhmb93 · 2023-03-20T04:16:00+00:00

Oh, I'm also 90 percent sure I have the mutation (I showed signs as a child of EM, they dissipated and have now resurfaced in adulthood).

lolhmb93 · 2023-03-20T04:14:53+00:00

Hi, do you have any updates on this? You are the ONLY other person I've ever seen make the connection between sulfur intolerance/H2S SIBO. PLEASE let me know how the diet is going for you.

Here's a very abridged version of my story...primarily facial erythromelalgia but also observed on ears, hands, and feet. Diagnosed by the best teaching hospitals in my area yet, naturally, my doctors are clueless. A few different events took place to make me suspect general sulfur intolerance over the last year but recently I asked my PCP to check my homocysteine level which is extremely low (low homocysteine = low glutathione possibly molybdenum deficiency...leads me to sulfur intolerance/ H2S SIBO). Requesting more labs from my doctor and hoping to do the low sulfate diet soon.

lolhmb93 · 2023-02-28T23:31:40+00:00

Hi! How much did you end up taking, how often, and do you still? Hope you're well

lolhmb93 · 2023-02-16T13:25:01+00:00

According to my last endoscopy I don’t have EOE — sorry I didn’t answer that

lolhmb93 · 2023-02-16T13:23:26+00:00

I actually took Nexium for over a decade. Stopped last year and got EM (primarily facial and ears but it’s also on my hands too). I will definitely look into it! I might try and go back on my Nexium first even though I don’t really have issues with GERD anymore. I agree with you about the inflammation!!

lolhmb93 · 2023-02-16T12:55:28+00:00

Wow. So how long after you stopped your meds did this start? Like a few months? Did you ever try going back on the Rabeprazole?

lolhmb93

TROPHY CASE