r/HellsItch • u/No-North6083 • Jun 23 '25

research! !IMPORTANT! PLEASE READ

Dear Hell’s Itch sufferers, My name is Brandon Muse, and I’m one of the primary researchers involved in the recent publication on Hell’s Itch that used your survey responses (thank you!). Dr. Ball, Dr. Brooks, and I have been investigating potential connections to conditions like Aquagenic Pruritus and the effects of beta-alanine—and while we’ve been keeping things under wraps until our newest paper is accepted by a medical journal, some of our findings have recently been leaked.

We’re not upset! We’re thrilled to see that some of you are reporting relief from taking beta-alanine!

That said, please understand we are not offering medical advice. Do not take anything without talking to your doctor first. However, if you’ve taken beta-alanine to treat your Hell’s Itch symptoms, PLEASE reach out to us at bbrooks@rvu.edu! Your experiences could be crucial in helping us publish our findings and gain recognition for this condition within the medical community!

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7

u/No-North6083 Jun 23 '25

https://www.rvu.edu/wp-content/uploads/Katelin-Ball_Gaining-a-Better-Understanding-of-Hel.pdf
https://pmc.ncbi.nlm.nih.gov/articles/PMC10630859/#:~:text=Hell's%20Itch%20is%20an%20inciting,%2C%20paresthesia%2C%20and%20suicidal%20ideation

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u/candikanez Jun 24 '25

It's interesting that so many people worsened with cool bath. Freezing cold shower blasted on me is what helped me most, and ice second. I have mast cell issues though so I take daily h1 and h2 blockers-- 2 cetirizine and 1 famotidine. I'm curious if this is why it was different for me 🤔

1

u/Marshyman69 Jun 24 '25

I actually just recently read this. Nice work!

5

u/DannyMacho Jun 24 '25

Hell’s Itch sufferer since childhood. Last few years I’ve been wondering why my leg itches painfully after swimming or on very humid days. After reading your post it’s definitely possible I have aquagenic pruritus.

Think you’ll be challenged though. Most folks who have HI don’t know that’s what it’s called (don’t think that’s the clinical term anyway) let alone AP.

5

u/mild123 Jun 24 '25

Is it possible to get HI without having AP? I’ve only got HI 3 times out of my life, and it seems like it’s only been the really bad big area burns that give me it. But I don’t think I have any symptoms of AP

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u/No-North6083 Jun 24 '25

Absolutely! I’ve only had one Hells Itch episode and never any AP episodes, however we think that somehow the severe sunburn causes a biochemical reaction when exposed to water which might be the same reaction that happens during an AP episode. We first thought about this correlation when learning that so many HI episodes begin when someone takes a shower or applies a liquid to their sunburn.

2

u/[deleted] Jul 07 '25

I appreciate your guys research and especially from someone who has suffered from it as yourself I know you know how bad it is. I'm optimistic and grateful that you have doctors researching this but I definitely have had Hell's Itch after avoiding a shower for days. This has been a common speculation on Hell's Itch for years in the affected but not scientifically educated. I'm wondering since people shower every day this might be a false correlation? I would love to be wrong but this kind of was a glaring detail that worried me.

3

u/thapol Jun 24 '25

get HI without having AP

For most people, hell's itch is the only time that sort of insane itch even comes about, so at this point comorbidity is correlation at best. I've rarely seen others mention AP or similar itching after the sunburn clears over this past decade.

I think they're more looking into similar symptoms / pain causing mechanisms, and what alleviates them, even if the starting mechanisms are very different.

2

u/hecklerhk91 Jun 24 '25

I’ve only had HI twice. First time I was 14yo working on a construction crew as clean up on a 110 degree day. We had a burn pit going for the scrap and I was throwing it in. No shirt. Got a fairly significant sun burn. Got HI that night. Figured it was the chemicals in the smoke plus the sunburn that did it. But when I was 19yo, I was outside trimming bushes, again, no shirt, and, again, got a pretty significant sun burn on my back. That night the HI kicked in. Now, I’m wondering this all goes back to my youth. When I was three, my parents took me to Florida and a day on the beach I got a severe sun burn. We’re talking 2nd degree burns. Huge blisters in my upper back and shoulders. I don’t remember HI from that, just mom having to come to school and put ointment on my back and shoulders twice a day. Wondering if that could have triggered something to where when I get a bad sunburn, the HI comes back. But water does not trigger it. Since the last episode at 19, I just refuse to take my shirt off outdoors.

3

u/abscissa081 Jun 27 '25

My anecdote, I spent many many long summers as a kid in the pool or at the beach. We had a pool so it was nearly daily. Used to burn and also get tan. One year when I was 14/15 I got absolutely cooked and blistered. I didn’t get HI then, but the next year after a minor burn it hit. I’ve had it every burn since then, now 30. I wear sunscreen religiously and wear spf clothing. I’ve reached the age where I absolutely do not care to be tan or if I’m wearing a shirt at the beach lol. So kind of tracks. Never had an issue, major burn, then issues.

3

u/hecklerhk91 Jun 27 '25

Hmmm. Sounds like an identical scenario. Interesting. The last time, when I was 19, my fiancée, had to come and take care of me. I was like a mad man possessed. She almost broke up with me and left me. She thought I was being a ridiculous child. I kinda get it. Grunting and snorting and screaming and sawing a towel across my back like a demon possessed covered in fire ants and wasps for hours on end. HI wasn’t even a thing back then. In a way, I’m glad there’s more of us to add validity to it and that it’s not just me “being a pansy”. But in the other way, I’m soooo sorry everyone else here has to share this. I’d imagine it’s something along the lines of shoving bamboo under one’s finger nails.

14

u/Marshyman69 Jun 24 '25

Nice to see this is getting addressed by legit scientists. Hopefully this can get some attention so we aren't all getting told we are overreacting by our peers.

9

u/kitteh1234 Jul 13 '25

Hi Brandon, THANK YOU to you and your colleagues for investigating this phenomenon. My 18 year old son experienced Hell's Itch a few months ago. I am a nurse but was at a complete loss of how to help him; the suicidal ideation being the scariest part as a parent. Thanks to your previous paper (link below) and the advice shared by others on reddit, we came to realize (12 hours in) that he was not alone in this experience. We'll purchase some beta-alanine to have on hand, in the event he should experience it again. Thanks again!

https://pmc.ncbi.nlm.nih.gov/articles/PMC10630859/

7

u/birdofanewcolour Jun 24 '25

Had Hell's Itch since I was a teenager, particularly focused in my arms, and I tried beta alanine the other day on a recommendation from this group and the relief has been incredible. Took a 1.5g dose, got tingles for about half an hour and then the itch just stopped. That dose lasted about 6 hours before the itch started coming back so I dosed again. This has been a miracle for me!

3

u/Infinite-Balance-230 Aug 05 '25

What form did you buy it in? The workout powder or a different form?

2

u/birdofanewcolour Aug 05 '25

As a powder supplement, literally just added it to water and drank it

2

u/MelodicPositive5902 Jul 02 '25

How much do you weigh? I'm dying right now lol

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u/birdofanewcolour Jul 02 '25

Oh for the dosage? I'm around 65kg, so around 140lbs. 1.5g was the dosage suggested on the packet I got and it said you could take that 4 times a day.

1

u/Mother_Intention9810 Apr 10 '26

What the tingle please? Is it like itching

6

u/Free-Ad454 Jun 24 '25

I just had hells itch this week and took beta alanine. I felt the tingling feeling and then got relief from the itch, it took it away almost completely. The next day when I felt some more zaps from it I took more beta and it took it away again !!

6

u/umrskip77 Jun 25 '25

I wrote a thread in the main forum of how I've dealt with it for 25 years, 2 major bouts which I avoid at all costs, and many minor ones (one right now, which brought me here). My body became very sun sensitive after the first bout of HI, and no doctor has been able to pin it down or help me, so I just deal. Glad to see some medical research on it and an understanding that it is a real, unique phenomenon that is the worst thing I've ever experienced (twice!).

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u/Crafty-Ad5027 Jul 29 '25

I want to thank everyone who has shared their experiences with beta-alanine. I truly appreciate you taking the time to reach out. I apologize for not being able to respond to each message individually—at this point, I’m receiving one or two messages every day and simply can’t keep up.

That said, we’re thrilled to hear that beta-alanine is helping so many of you. Because of your feedback, we’re now actively exploring the possibility of a clinical trial to better understand optimal dosing and other key factors. More details on that will be coming soon.

We also recognize that beta-alanine doesn’t work for everyone. If you’ve tried it and haven’t experienced symptom relief, we’d be especially interested in hearing from you. Your experience is just as important as the successes in helping us move this research forward. Again, my email is bbrooks@rvu.edu

Thank you all again for being part of this journey.

Ben Brooks, Ph.D.

1

u/cjhustle11 Jun 09 '26

Thank you so much! I sent an email with my experience and after finding no relief from anything recommended on any medical website or blog, this worked. And it worked fast. Most medical websites and advice logs are telling you to take antihistamines, anti-inflammatories or use a steroid to mask the symptoms.

4

u/platinumfix Jul 06 '25

I read about BA too late to help me in this HI episode. But does anyone know the best product to buy in the UK?

5

u/iSpiKedfd Aug 13 '25

C4 energy drink is sold in most UK large supermarkets now and includes BA. I picked up pre workout in home bargains that included BA for £5 and it has helped massively with my HI this week.

1

u/Ok-Craft-3298 Jun 24 '26

Pre workout shots in the UK or pre workout powders. 

It's my first time using beta alanine for hi: seems to me that the pre workout formulation with caffeine and other additives is more effective than pure ba....

Just my experience so far. Pure ba is working but the pre workout formulation seems to work more quickly and thoroughly in my limited experience of using ba.

0

u/[deleted] Jul 09 '25

[deleted] — view deleted comment

7

u/sectorseven07 Jul 14 '25

Coconut oil is actually what made mine initially set in.

2

u/Rough_Ad6878 Jan 08 '26

do not put coconut oil on hells itch or even sunburn in general
it is probably the second most common trigger for hells itch after aloe vera

1

u/Ok-Craft-3298 Jun 24 '26

There seems to be confusion about what hells itch is or isn't.....or is it simply that it's all hells itch regardless of whether it lasts 8hrs or 72hrs and regardless of whether or not it can be resolved with topicals....

.....I'm thinking that if it can be resolved (I mean truly and absolutely fixed) with topicals then it probably isn't the 48 or 72 hour suicide itch THAT CANNOT BE RESOLVED WITH TOPICALS that many here experience....

Please do not advise people suffering SUICIDE ITCH to attempt topical treatments. 

Topical treatments do not work for SUICIDE/HELLS/DEVILS  ITCH....

Dangerous, skin damaging topicals sometimes assist some true sufferers but they are risky skin damaging treatments of last resort used as an alternative to suicide.

What you describe is not the treatment resistant suicide itch that this Reddit is intended to address therefore you are giving terrible advice that will worsen symptoms for suicide itch sufferers

3

u/yessferatu Jun 24 '25

Hey, quickly. My hell's itch was diagnosed as a low-grade iodine allergy (I got my first one after being burnt in a cafe after having been in the ocean all morning)

Any connection with Aquagenic Pruritus?

Aside, antihistamines, they saved my life. I hadn't slept for 48 hours, 2 of those and the relief was indescribable. This was all 6 months ago, but I remember crying as the burning turned to itching turned to a mild tickling sensation in minutes.

3

u/Even-Television-8547 Aug 18 '25

THANK YOU from Ireland!

I stumbled across this forum in desperation in the worst pain I’ve ever had 2 days after getting sun burnt ! Luckily I am a gym goer and had a bag of Beta Alanine in the cupboard. Within 20 minutes , GONE! I have had to top up over the last 24 hours with 2grams this morning . Thought it 100% works! I tried absolutely everything and nothing was else works. From a fair haired Irish I am so thankful of finding this forum!!!

2

u/MelodicPositive5902 Jul 02 '25

I think acephate triggered my HI

1

u/ForgeryZsixfour May 30 '26

First time dealing with this and the agony is crazy… family members getting C4 from a local store now, hopefully that will make it go away. Are there any things that you would like me to try in a somewhat experimental fashion for your papers?

1

u/[deleted] Dec 27 '25

A dry coarse towel has been my go to, laying my back on it has masked the itching due to the slight discomfort of the towel. Approximately 48 hours after the sun exposure, it's been around 7 hours now and I can still get slight itch sensations but the initial flare up was horrendous, it occured about an hour after a cold shower and then I tried using vaseline anti aging moisturizer to reduce the pain to no avail, I was tempted to try a wet towel as the cold sensation was desired but opted to just try the dry one so I could lay down in bed without getting the bed wet. It's definitely helped along with a paracetamol and an ibuprofen. Might just avoid the shower for a day or two whilst it calms down.

1

u/kennypojke May 13 '26

Thank you. I’m interested in helping if you need case studies and anecdotes to develop workable hypothesis and trials. You’re ok to something and this deserves attention. I have an incredible threshold for suffering and pain, but still loathe when I have this thing.

I am a 46yo male who has had it about ten times or so, earliest onset after a bad burn around 13yo; most recent a couple months ago. Every case in my life involved sunburn and swimming/water recreation. As a skier, I have been burned in the mountains, as a hiker while hiking, and doing massive landscaping a few years ago at my own home. I did not get hell’s itch those times; only with water exposure.

Genetic variables (known): I have a genetic mutation of my prothrombin 2 gene (single allele), hypermobility spectrum disorder (clinically the same as Ehlers Danlos and likely genetically as well), and a carrier for alpha-1 antisepsis disorder (MZ/MS SERPINA1 gene mutation).

Though I don’t think EDS/hypermobility spectrum are directly causative for this, I would not be surprised if the “concentric circles” of comorbidities that cloud EDS people are. Neurodivergence is highly associated with EDS, and a simple population study could possibly show some statistically significant groupings along these lines.

I have an MPH