Yeah I was gonna suggest MCAS since you have POTS and hEDS. It’s wild isn’t it? Have you tried a low histamine diet?
39
u/kgirl244
Have you ever tried midol complete? The antihistamine in it makes me feel incredible on my period. If I don’t take it, I’m doubled down feeling like death as well. I have a lot of MCAS symptoms but didn’t qualify for the full blown diagnosis
21
u/juneberry19
I started taking cetirizine hydrochloride 10 mg last month, and the period I just had was SO much better than the last few. I had no diarrhea, no intense anxiety right before my period, AND i only took like 400 mg of ibuprofen each day. I’ve decided to just take it every day for the next couple of months (since I get seasonal allergies in the spring anyways). I’m honestly so shocked that an antihistamine would make such a difference. I’ve only been diagnosed with endo but nothing like MCAS, but suspect I have some other reactive immune disorder.
12
u/kirtknee
Wow. This is would be so nice! I’ve been taking a daily antihistamine for over a decade and do occasionally need a second during luteal or menstrual since I feel extra skin crawly. Wish it would help my cramps 😭. But I’m glad you’ve found some relief!
11
u/FlashyResearcher18
Thank you for your post! I’m not formally diagnosed but I show many symptoms that the doctor dismissed as work stress. I had a similar experience. I took one bilastin pill and a DAO supplement and overnight my period flu disappeared. There really is a link between estrogen/histamine but given the low status women’s health has been given we don’t even know!
9
u/These-Foundation6815
You’ve just given me a realisation too. I had excision surgery Dec 24 and symptoms started coming back June 25. I’d had weird mobility issues and stuff I’m putting down to massive vitamin deficiencies since about the April, plus the start of what I think is probs MCAS symptoms around same time. But the endo pain was manageable up until November when it hit me like a ton of bricks.
I stopped taking daily antihistamines in October. I wonder if that might have something to do with how the pain went from 1/10 to 5/10 to 9/10 in the space of three months. Huh.
9
u/keyst
I take Pepcid AC as an H2 blocker and when I stop I flare up. I figured this all out on my own.
7
u/vienibenmio
Yeah, Tylenol PM has really helped with my pain in the past. My brother-in-law is a doctor and says that benadryl reduces inflammation
5
u/Tallchick8
Just a PSA in case anyone is thinking of trying antihistamines.
They really do not mix well with alcohol.
I remember when I was in my early twenties and had gone to Vegas and was completely clogged up with allergies and took an antihistamine and drank a glass of champagne at brunch then had to sleep in the hotel for the next 6 hours.
Definitely look up other drug interactions also but this one's a major one.
Really glad that you found something that's helpful. OP.
5
u/ParsleyImpressive507
I think I’ve got histamine issues at play. Will come back and read you post more thoroughly!
3
u/calilica
hi! can you tell a bit more about your IBS symptoms? were they mostly diarrhea or constipation-based? asking cause I suffer from persistent constipation for YEARS and have tried every GI test on Earth but only get normal results 🫠
2
u/Sad-Gold-6656
With all of your comorbidities, I would make sure to be checked for May Thruners and Nutcracker. Also, people with hypermobility sometimes have pelvic floor dysfunction and not Endo at all. Look into stomach compression like Jelly Band. Have you gotten scans for compressions? P.S. People with your comorbidities get surgery all the time. You just have to let your doctor know and make sure the anesthesiologist is knowledgeable on your comorbidities. Lastly, I know diet changes suck. I'm also Autistic. But looking at the low histamine diet and making small changes can help. For example, I cut out onion, garlic, tomatos, wine, beer, and try to limit dairy. But I can't give up the dairy!! Good luck ❤️
2
u/pinball_life
Endo tissue creates estrogen on its own, then histamine and estrogen create a potent feedback cycle with each other. Have you been recommended mast cell stabilizers to reduce the release of histamine in the first place? Traditional anti-histamines are generally receptor blockers and not as effective at reducing the load and disrupting the cycle.
2
u/hemkersh
Take some pepcid too. Combo of H1 and H2 blockers is helpful
2
u/cosmolity
I just wrote this comment so I'll post it here for anyone who might stumble upon it.
I'll add that anti histamines, specifically desloratadine, was the only thing to help with my pain also along with the following:
I have suspected umbillical endo and it was as only by fluke that I found something that works for me. My pain flares happen when I deviate from the diet I'm on to control another set of issues I also have-including salicyate and histamine intolerance and sjogrens symptoms-severe dry eyes and dry mouth, brain fog and fatigue.
It was only by fluke to try to treat the, at the time mild, dry eyes when I took seal oil omegas that my dryness went away. When I stopped the omegas, within days my hair started falling out. The dry eye and mouth was unbearable. Insatiable thirst. No eye drops helped. My tongue started to dessicate. I thought I would have to quit work because I couldn't think at all the brain fog was intense and unrelenting. I started the seal oil and the symptoms started fading and in a few weeks were almost gone. I have tried to come off the seal oil several times with the same result-it comes back with a vengeance.
It was during one of those times that I stopped to see if my body could handle it that I started getting umbillical endometriosis symptoms. Starting them again staved them off. I began the diet of low salicyate, low histamine, no sugar, no dairy and low gluten and for six months I felt normal. When I stopped them again is when all hell broke loose and I had stabbing needle like pain, burning across my entire abdomen, a lightning rod like pain right through my entire abdomen, pulling and tethered sensations around the navel and to the right. Sharp pain during BM. I had daily unrelenting pain for two months, even though I started the seal oil after only five days off it. Gradually it went away. Gluten triggers it also, certain types of wheat. I still have very very mild pain and not every day like it was then.
I have theories about what's happening to me because I'm driven to understand the mechanisms behind it. I am a carrier of pathogenic e coli from food poisoning and I had COVID before the other symptoms amplified. It's suspected by doctors that the EPEC and COVID, perhaps long COVID, have contributed to this and now I think there is some sort of MAST cell mediated histamine and salicylate dysregulation/ COX-1 pathway dysfunction that the seal oil somehow down regulates because of the strong combination of DPA, EPA and DHA. Most other omegas only have trace amounts of DPA, so I think this is why the others didn't work for me. I also have anti vinculin autoimmunity from the food poisoning.
I think we underestimate the level of inflammation that can happen when a certain type of bacteria not only damages the mucousal and epithelial lining, but also takes hold and produces continuous toxins and prevents other bacteria from breaking down histamine and other chemicals like they should be. Some of these bacterial colonies may also be producing too much histamine hence they add to a system already overloaded with inflammation. Once the loop begins, like with endo, then it may be a difficult process to interrupt, especially if the colonies arent eradicated and continuing growing and damaging.
Just sharing my experience. It's anecdotal but if it can help even one other person then this worth it.
2
u/calilica
Oh, just one last question: are you diagnosed with endometriosis or just suspected it?
1
u/FaithfulButterfly91
So it just takes the pain away but doesn’t lighten your period right? I have a prescription for cetirizine. I might just have to try it. My doc just gave me a prescription for tranexamic acid for bleeding too. Hopefully I can take them together.
1
u/cozycorner
I have laparoscopic confirmed endometriosis and got a hEDS and fibro diagnosis about 4 years ago. Early menopausal about that time too. Now I’m 49 and went to get an allergy test since I got alpha gal (unrelated to the other stuff) and it turns out I had a response to almost everything and I’m taking shots. It all has to be related. And I feel better the day as I take antihistamine too!
1
u/IcyFuel5368
So you’re just taking loratadine?
1
u/puppycatbugged
i started cetirizine last month when i started to feel what I usually call the period flu (super heavy body, lethargic, massive jaw and head pain and swollen nodes, etc.) and within a few hours of taking it I didn’t feel 100%, but it was definitely a massive improvement. in january i was SO sick, like just a whole mucus production factory and i wish i had known to try it then. just like i wish doctors would even suggest this to us as an option so we don’t have to suffer without trying anything.
1
u/Wooden-Discipline444
What’s the histamine called ?
1
u/donkeyvoteadick
I have allergies so take antihistamines regularly, can't say they've ever helped my pain but it would be great if they did haha
1
u/nmw84pdx
I wish antihistamines would help mine! Lol. I’m allergic to… well, fricken everything. I’ve been on allergy meds nearly my whole life, so I hope someone would have noticed a difference in inflammation at some point or another. Although I didn’t get endo dx until I was 37 and it was during my hysterectomy, so…
I’m so glad you found easy (ish, you know what I mean) relief! I hope it continues to improve 💛
1
u/Secure-Remote8439
POTS and Mast Cell Activation Syndrome are a bit related. (I just learned this because I was researching POTS after seeing this post)
1
u/rollingdeepdelphi
Some antihistamines can kill interleukin pain signalling I think read somewhere and so halt somd inflammatory pathways.
You might be a good candidate for the melatonin protocol and the ginger protocol too if this worked!!
1
u/Opal-Planchette018
Yes! I had a friend tell me a Pepcid a day keeps the crazies away! She had read somewhere that antihistamines could help with her horrible periods and thought she'd give it a try. It worked so well for her I also wanted to give it a shot but it seems to have reactions to some meds I'm on.
Glad it worked for you as well!
I think, since it doesnt really hurt you (confirmed by my friend's doctor) anyone who can should take a Pepcid a day.
**Pepcid brand only, per my friend the store bought stuff does not work the same 🤷🏻♀️
1
u/Possible-List8078
Living with chronic pain for years is exhausting 😔 sometimes looking into new treatments or clinical trials can open up options that aren't widely available yet. I heard Care Health might have some helpful info that might help you .
1
u/Inside_Prize9932
Try CASTOR OIL in the navel. My story I started having bad periods where I'd swell up like I was 9 months pregnant all the way to ribs, my stomach was tender to touch, it hurt/felt like it was all swollen when I had a bowel movement, have to be under heating pad for first 2 days just absolute miserable. Had a ultrasound done bc thot I had endo, results came back normal. I was diagnosed with PCOS 10yrs ago. I'm 34 now. Doctors only solution was birth control pills, which I refuse to take, so I took matters into my own hands an tried castor oil. Let me tell u it works, I have to make sure I'm taking it everyday especially b4 period starts, I have no bloating, I can eat whatever, I do still have like ghost cramps but nothin that needs ibuprofen. I put oil in my navel an a small swipe across waist line every night (sleep in a top u dnt mine gettin stained) start off small bc it could disrupt ur bowel movements. I feel like maybe I have endo in my belly area but I don't wanna have surgery to find out lol hope this helps some. I will be tryin the allergy meds too
1
u/wellnest19
@OP Which antihistamines are you taking? I have some of these same issues. Thank you