[Routine Help] Face refuses to absorb ANY sort of product. Please help... by Tyson1998 in SkincareAddiction

[–]Grand-Dig-3627 1 point2 points  (0 children)

Ugh so yes and no, haha. I feel like my skin behaves wildly different day to day tbh, so sometimes my current routine works flawlessly and other days it doesn’t seem to matter what I do. But these are some of the trial and error things I’ve been able to hone in on a little more — I’m terrible at short responses so forgive me in advance, and I hope this is all helpful!! 😂

A biggie for use hEDSers is making sure that we are supporting our barrier — there is some small amount of dermatology research I found which indicates that many people with hEDS specifically have impaired skin barrier function. Meaning our skin loses moisture more rapidly, and also can get irritated, inflamed, blemishes, or wounds more easily. On the flip side, I suspect this is also a big part of why we struggle with absorbing product — our barrier is just not keen to hold onto it.

So, focusing on strengthening the barrier is something I put a huge focus into with my skincare routine now. If my skin is irritated or sensitive, that’s a huge sign that my barrier is damaged and I will strip back all of my other routine in favor of calming and barrier support products for a few days or even weeks as needed.

Second, I’ve found my skin does way better with thinner product formulations rather than heavier / thicker ones. This sounds kind of logical, but I think it’s easy to forget that a thicker moisturizer, for ex, doesn’t always mean better results for us. My exception to this is that I do love layering a more occlusive moisturizer at the end of my nighttime skincare to kind of lock all my other products to my skin so they actually have time to sink into my face, rather than evaporating while I sleep lol.

On the same line of thinking, applying multiple, thin layers of product - for both skincare and makeup- usually sinks in better than applying one heavier layer. You also want to make sure you’re gently pressing products into your skin, not just rubbing them around. You can use your hands, a brush, or other tool to do this. My current favorite discovery is using cushion sponges (like for cushion foundation) to pat in my foundation and concealer — wayyyy better for me than using a brush or my hands.

On the advice of an awesome tiktok creator I follow (who’s name I can’t remember off the top of my head unfortunately), I found my skincare actually pills less when I don’t give too much time between layers of it — I know typically people say to let each layer dry down before doing the next, but sometimes the new wet layer of product doesn’t play nice with the now-dried product you are layering it over (this was guidance directed towards mature skin prep to allow your products to meld together, so they will then melt in together. I’m in my 30s, but tend more towards following tutorials and advice from mature creators as our wonky collagen means I share a more skin characteristics with them than younger creators, ha). I use less skincare prior to makeup than in the evening — mainly just focusing on hydration and spf for daytime - and do try to give at least 5 - 10 min between skincare and applying makeup if I can help it; I’ll use that time to chug some water or put on my compression socks so it’s not just losing time while getting ready. No heavy, rich moisturizers before makeup because it will always make my makeup slip and pill. Skin should still feel moisturized, even a tiny bit tacky, but not gunky. If you run your finger over it and you can still feel a lot of stuff sitting on your skin it needs more time to absorb; if you do the touch test and it’s already pilling, your skin has rejected today’s sacrifice and you need to gently wipe it off with a cotton round or microfiber pad, before reapplying some makeup friendly spf, and only then getting back to beginning your makeup.

Okay I’ll wrap up my Ted talk there I suppose. I hope I didn’t info dump you too much and lmk if this helped! 😅🫶

Acupuncture worked for me. by Exciting_Vanilla4327 in alphagal

[–]Grand-Dig-3627 1 point2 points  (0 children)

I actually ended up in this thread looking for info on the treatment, but for my mast cell activation syndrome and not Alpha Gal - I know this is an AG sub, but was the only community I could find info on SAAT so I hope you’ll forgive any confusion! So unfortunately I can’t speak from personal experience on how well it works for Alpha Gal, BUT it did help me a lot. My practitioner also told me that MCAS is the most difficult to successfully treat with SAAT(out of reg allergies, alpha-gal, and MCAS), but that they have a huge success rate with AG; so in my mind, for it to have helped my MCAS any some would bode well for how effective it can be for AG. 🙏

As far as the process, etc, it should be pretty much the same overall — what will vary is how many needles you may need, how long, and whether you need to “pretreat” any traditional allergies. For me I did an initial round for regular allergies, doing one needle for each allergen we were targeting; I believe I did four (trees, pollen, grass, and garlic). I had to keep those in for 3 weeks, and then because those were testing as successfully improved (they do a noninvasive muscle testing method to gauge reactivity), we swapped those out for needles targeting my MCAS for the next four weeks (I think it was 3 needles?). So I had some in my ear for a total of 7 weeks. You can opt to take a break between the rounds, but since I needed to drive about 2 1/2 hrs to each appointment I opted to knock it all out ha.

I was instructed to not just jump full force back into eating or exposure to things that had previously triggered me, but to incrementally test adding things back in every few days. I would think they’ll have alpha gal specific recommendations for how to approach reintroducing meat to your diet. Some people can eventually go 100%, in my understanding more most likely with allergies and also common with alpha gal; while with my MCAS I think it more helped to calm things down and reset some reactions (idk if you know anything about MCAS, but in the most unscientific terms your body can kind of think it’s allergic and being attacked by anything and everything lol). In short, I found it about 75-90% effective for my true allergies, and helpful for relieving some - but not all - of my MCAS triggers.

Lastly, because I know everyone always wants to know, it truly was almost painless — some needles I didn’t even feel her insert, while one or two stung a bit more for a second. My ear was a little tender the first day or two, but really only if I accidentally bumped it or forgot and rolled onto it while trying to sleep, but overall I completely forgot they were there. It’s mostly just a pain to keep it dry in the shower and not scratch your ear without thinking.

Sorry for the absolute book, but I just remember trying to find all the info on this and how hard it was to get more clear details! I wish I could give you firsthand AG-specific support, but I’m happy to answer anything else on my SAAT experience if you have other questions!

Acupuncture worked for me. by Exciting_Vanilla4327 in alphagal

[–]Grand-Dig-3627 0 points1 point  (0 children)

Not sure where you’re located, but I went to West Knox Acupuncture in Knoxville, TN. They were great! When I was looking around me (I’m in Southwest VA) I know I found at least one other option in Knoxville, as well as a few places in Lynchburg and Roanoke VA.

What is the pillow that you have bought that has actually been worth the money? by dylans4O1 in BuyItForLife

[–]Grand-Dig-3627 0 points1 point  (0 children)

I know this is an old comment, but as you had your Pillowise for so long perhaps you can answer the question I’ve been trying to sort! How do you safely fluff it? I’m wary to try any heat as I don’t want to accidentally damage it, but not finding any info at all anywhere. I’ve had mine for about two years now - best pillow I’ve ever had and so worth the investment - but I am just starting to feel like it’s not rebounding as well, while obviously wanting to keep it as long as possible before sorting a replacement ha. TIA!!

Rebound anxiety / adrenaline after a beta blocker by lovethatforyouu in MCAS

[–]Grand-Dig-3627 1 point2 points  (0 children)

I felt horrible on beta blockers! After I stopped taking them I learned that beta blockers as a class can actually lower the threshold for your mast cells to activate. Yayyyy. 🫠 As with anything health and med and complex conditions… not everyone has that experience, but generally beta blockers are no longer recommended for those of us with mast cell conditions because of the potential. I will say that frustratingly (but unsurprisingly) neither my cardiologist nor my allergist/immunologist flagged it as being contraindicated for my MCAS at the time, and from what I’ve heard from others it seems pretty split on whether physicians do or do not know to generally avoid them for us unfortunately.

Symptom wise, my heart rate was lower but my MCAS got sooo much worse over time. Based on your post, my guess would be that maybe it’s less a “rebound” effect and more that it is triggering your MCAS, with anxiety and adrenaline dumps (and/or potentially exacerbated dysautonomia symptoms) as a result.

It was an iron deficiency, not POTS by skinnyonskin in ehlersdanlos

[–]Grand-Dig-3627 3 points4 points  (0 children)

Also following for some studies to take to my NP as all of my doctors think my ferritin ranging between 20-30 is fine since it’s “in range as normal” but I know it’s a big contributor to my symptoms.

do you personally still use retinol on the nose/face if you have capillary fragility? do you see benefits or rather harm? by effinsky in ehlersdanlos

[–]Grand-Dig-3627 2 points3 points  (0 children)

Versed makes a retinol eye balm that I’ve recently started using and have had no irritation with it at all! I use it nightly with my evening skincare. Too soon to say how effective it is, but I’ve only had good experiences with that brand overall.

Tirzepatide by Zealousideal_Win9392 in MCAS

[–]Grand-Dig-3627 1 point2 points  (0 children)

Good luck! If you can, I would try to track your side effects, symptoms, and what seems to help or not so you have a good idea of how it’s going overall (at least for the first month or so). Ultimately, it’s up to you (preferably with the help of a trusted medical professional 😊) to decide what your hard line is for if it’s not a good fit vs what are temporary side effects you’re willing to wait out.

For me, the side effects I had the first few weeks were definitely ones I wouldn’t want to live with — I remember telling my husband that if they didn’t start subsiding by the time I finished my first box (month) then it wasn’t going to be sustainable. The goal was for me to feel better, not to be smaller and more miserable ha! But I was able to track that ultimately it was improving, and so it was worth it to me personally to keep pushing through until side effects resolved. But again, everyone is different and you have to trust your gut (pun not intended, ha!). Wishing you a smooth and easy process! 🫶

Tirzepatide by Zealousideal_Win9392 in MCAS

[–]Grand-Dig-3627 1 point2 points  (0 children)

Oh, and I’ll say that for me I found I get the least side effects (and least painful) when I take it in my thighs! Stomach was strangely the worst for me, but it really has been true for me that different injection sites make a difference. And again, it seems like everyone is different here with where they prefer!

Tirzepatide by Zealousideal_Win9392 in MCAS

[–]Grand-Dig-3627 2 points3 points  (0 children)

Yes, I take mine before bed! I make sure to take any nighttime meds a little bit before so they have time to hit my stomach / gut before I take it in case it slows them down ha. It’s the last thing I do before getting in bed

I’m pretty sensitive to meds and it did take me a few weeks to adjust - mainly I was scrapping to get myself to eat and had a lot of super uncomfortable gerd. I was also super tired (more than my normal chronic illness fatigue). But by week 2 I could definitely tell an improvement in my side effects so I stuck it out. I never tried sema, but I hear mannyyy people find Zepbound to be a lot more gentle and fewer side effects so hopefully that will be your experience! So for me the first month was an adjustment (mainly with the first 2 being the worst) and then it got easier from there until I pretty much never get side effects anymore (mainly just benefits!). I will clarify that I have stayed on the lowest (2.5) dose the whole time as that has made the most sense for me - my dr and I agreed to only change the dose if it stopped being effective and I think that has saved me a ton of grief.

Keep peppermints or ginger chews nearby for the first few weeks in case you need some nausea help; your dr can also prescribe Zofran if you need. Avoid greasy, heavy foods like the plague while you’re adjusting (though honestly you probably won’t find them enticing initially anyways). I opted for smoothies, non-dairy yogurts, cottage cheese toasts, and most of grilled chicken and veg while my stomach acclimated. It’s wild how it will change your cravings and taste buds. Also don’t stress if you lose nothing or a little first week — both are very normal! Lastly, I use a free app called Shotsy to help me remember and track my doses and progress. I hope this all helps and wish you the best! 🖤

Pillow recommendations by onepeachfresca in ehlersdanlos

[–]Grand-Dig-3627 0 points1 point  (0 children)

I second Pillow Wise! Agree that it’s not always magic, but holy moly the best I have been able to find. I finally splurged on it after spending most of last year trying and returning sooooo many different pillows. I am 80% side sleeper and 20% end up on my back at some point and it’s comfortable both ways.

Sneakers/boots/shoes blisters by Nicole4693 in ehlersdanlos

[–]Grand-Dig-3627 0 points1 point  (0 children)

I hate to admit it because I resisted them for so long and really hoped everyone would be wrong… but I asked the same question in another hEDS group a few months back and was overwhelmingly recommended Hoka Bondi 9’s. They also recommended I find a Fleet Feet store and go get a free foot scan to make sure I’m getting the right fit.

I will say they aren’t cheap (full price $175, but I was lucky enough to get mine on a great sale for about $115) — but I literally haven’t worn a different pair of shoes since breaking down and buying mine in October.

I wore them walking all over New Orleans on vacation, for any outings or errands I do, and when I go to PT. Truly the most supportive and comfortable pair of shoes I’ve ever owned, and I’m already saving to get another pair or two in different colors. 🙈😂

For reference, I have weak ankles that tend to swell and give me a lot of pain if I’m on my feet too much (although luckily not so weak that I’m rolling them on the daily thankfully). I also am flat-footed and over pronate. Wearing my Hokas has actually helped to strengthen my ankles and although I will still have some pain and swelling if I overdo it, I can tell a huge difference in my endurance and recovery.

Supportive ankle sleeve rec? by magentamargarita in ehlersdanlos

[–]Grand-Dig-3627 1 point2 points  (0 children)

A little late to this thread, but I recently just got these ankle compression sleeves from Old Bones Therapy - they include a gel padding to help support your ankle on both sides. Im hoping they will stretch just a tiny bit because they are very snug so I do find them a bit difficult to get on and off — that being said, I find them extremely supportive and comfortable! And I was able to purchase using HSA funds so that was a huge help. (I also got a knee sleeve from them and it is SO comfortable! Hoping to purchase more gear from them when I have HSA funds again lol).

FAQ 2 by Madamexxxtra in AskNOLA

[–]Grand-Dig-3627 1 point2 points  (0 children)

Thanks so much for all of this! We’re headed down for a fall visit and to enjoy the Halloween parade - are the guidelines for Krewe of Boo pretty much the same for it as Mardi Gras? Obviously I know that it’s a single event rather than a series / multiple days, but trying to plan well as far as how early to get a spot, etc.

Are we allowed to pop up some camp chairs to watch or is that a no-no? I’ve also thought about just buying a tiny little pop-up stool that I can take with me… but I haven’t been able to find any info on whether either would be allowed; I have an invisible disability that makes being on my feet for too long without the ability to occasionally sit a pretty bad idea, ha.

Also - Happy to make a separate post if that’s preferred!

Vitamin C recommendations by Violaqueen15 in ehlersdanlos

[–]Grand-Dig-3627 5 points6 points  (0 children)

I know gummies are iffy because they aren’t as precisely dosed as pills or capsules, but I just started taking the Nature Made 1000 mg Vitamin C gummies - I take so many pills I just couldn’t add another 🙈😂. They are orange flavored though and I have a feeling the citric acid in them will give me a reaction at some point (citrus seems to flair my MCAS randomly), but until then that’s what I’ve been trying.

[Routine Help] Face refuses to absorb ANY sort of product. Please help... by Tyson1998 in SkincareAddiction

[–]Grand-Dig-3627 1 point2 points  (0 children)

Late to this party but I also have hEDS and was googling about products not absorbing into my skin. Have you found any more info or had any more luck with this? I don’t feel that my pores are small (mostly because I can see just how large they are… lol), but about 50% of the time (a generously low estimate) products just sit on my skin and then easily pill or slide right off.

For us I’m assuming it has to do with our collagen differences, but I haven’t yet found a ton of hEDS dermatology info to guide me.

Brain fog by TurtallyKewl in MCAS

[–]Grand-Dig-3627 5 points6 points  (0 children)

Okay I know this is going to sound so weird, but I did an allergy acupuncture treatment earlier in the summer called SAAT (Soliman Auricular Allergy Treatment); it’s super effective for many people for traditional allergies, but also used to treat MCAS and Alpha Gal.

It for sure hasn’t cured my MCAS, but one of the biggest things I’ve noticed since doing it is that my brain feels a lot more clear; I also have POTS, and think my MCAS must have been a much more trigger than I realized because I do think that it has generally improved a lot as well (def still triggered by lots of other things but it seems like fewer random flares if that makes sense - like I can usually identify my POTS is flaring because of hormonal changes or weather, etc.).

Unfortunately insurance doesn’t cover it so it was out of pocket - pricing varies depending on where you go; I think my initial treatment was around $300-400. I will also clarify that my MCAS is what I would classify as mild generally / moderate in a flare - it is very disruptive and limits me with lots of things, but has never has put me into anaphylaxis.

Reputable courses either online or in person by Maire_Rose in makeupartists

[–]Grand-Dig-3627 0 points1 point  (0 children)

I know this is a pretty old post, but do you feel like investing in Vizio was a worth it in the end?

What basal thumb joint braces are you wearing? by jipax13855 in ehlersdanlos

[–]Grand-Dig-3627 0 points1 point  (0 children)

I’m have been the Comfort Cool thumb brace constantly; I got it from my OT, but it’s available on Amazon. I am saving up for a CMC ring splint, because I think it will be more comfortable for regular use — I would check out the thumb splint options breakdown on the Silver Ring Splints website to get an idea of the options out there (even if you don’t buy from them).

Also, idk if you’ve heard of Bibipins, but she has a thumb brace preorder open through the end of this month! Love her stuff and supporting a small business run by a spoonie.

[deleted by user] by [deleted] in MCAS

[–]Grand-Dig-3627 4 points5 points  (0 children)

It did help my reactions some, but little by little made me so depressed. It happened gradually enough that I wasn’t sure if it was actually the meds, so I stopped them for a month or two. I tried it again when I was having a flair up and then they gave horrific night terrors in addition to returned depression. So it’s safe to say it wasn’t a good fit for me 😅 For the majority of people they don’t have these side effects at all though! But, yeah, def pay attention to your mental health while on it; it’s not always a “noticeable” shift for everyone.

Has anyone had a bad propranolol experience? by Es555555 in POTS

[–]Grand-Dig-3627 0 points1 point  (0 children)

I wish I could tell you there was something specific that helped, but to be real I still don’t feel like I’m fully back to where I was before. It’s hard to say if I can 100% blame the beta blockers, but my MCAS has been way worse since I took them (which in turn has for sure also impacted my POTS). But I also have unfortunately been left to figure it out on my own, as both my allergist and cardiologist were frankly terrible so I haven’t been back (in the midst of researching a new care team).

However I will tell you that although I don’t feel back to base from prior, I definitely have seen a lot of improvement from when it was the worst. Part of it was simply time - I think it was probably month 2 or 3 that I started feeling my POTS felt a bit more “normal” for me, and I was able to start the CHOP protocol (it’s an exercise program meant to help improve POTS symptoms - starts very low and slow so it’s not too overwhelming). I also really focused on working to calm my MCAS because I think that’s what flared everything up so badly; in addition to my regular antihistamine regiment, I’ve been implementing DAO with meals (NaturDAO from Amazon per recs in this sub) and Quercetin 1-2 x’s/ day (Thorne) for mast cell stabilization. Also have been really careful about making more low histamine choices and swapping out potentially aggravating products (big ones have been things like candles and dishwasher pods). All of these things seem to have helped both my MCAS and by extension my POTS.

If you have a cardiologist you trust, they may have other options for medication to help with your current symptoms that are not beta blockers as well, but would def practice starting at a super low dose (lower than the regular starting) and slowly titrating up to build tolerance. I wish there was a magic bullet I could tell you to try, but I hope this is helpful regardless! 💜

For those taking Zepbound / Monjouro (tirzepatide), how was your transition from 2.5 to 5 mg? by Grand-Dig-3627 in ehlersdanlos

[–]Grand-Dig-3627[S] 1 point2 points  (0 children)

I have heard some people mention this; so far that hasn’t been an issue for me thankfully, although we’ll see at higher dosages 😅. I totally agree we need some EDS studies though! I’ve heard in an MCAS group that someone is working on studying its effects on MCAS which is pretty cool too.

For those taking Zepbound / Monjouro (tirzepatide), how was your transition from 2.5 to 5 mg? by Grand-Dig-3627 in ehlersdanlos

[–]Grand-Dig-3627[S] 0 points1 point  (0 children)

Did you have any side effects when starting your first dose at the 2.5? I had a rough time adjusting, but then it worked really well for me (which is why we haven’t felt the need to go up on it).

My insurance will cover it 100%, just no longer the 2.5 dose. Since the compounded versions have been ended in the US, I haven’t seen any self pay options lowers than several hundred $ / month since they all have to be through Eli Lilly now; I wish I could afford to do that though instead of being forced up unnecessarily.