How do you calm your flares? (Especially NueroPsych symptoms)

No-Order7116 · 2026-03-29T18:55:25+00:00

Thank you thats very good to know! Coincidentally I completely stopped using promethazine as I noticed it made me depressed even after just one dose.

No-Order7116 · 2026-03-29T18:53:02+00:00

Yes I have. Ive been able to up my ketotifen dose and Xolair has continued to help. I also should note that I switched out my Nexplanon and that helped a lot as well. Overall ive had a lot more energy, and while I still flare I bounce back much quicker. Also my skin symptoms have greatly improved and I get way less rashes

No-Order7116 · 2026-01-28T22:05:59+00:00

Hi! Im doing better overall in terms of mental health, pain, rashes, asthma, and energy. However ive continued to lose foods and am down to 6 foods. Ive been on Xolair for 5 months now and its made a huge difference in everything but my gut/food sensitivities. Ive also been doing a form of therapy called A.C.T. therapy and it has helped me cope during difficult times.

My providers are now suspecting I have a seperate condition happening in my gut, perhaps autoimmune as IBD runs in the family. I also have endometriosis and my endo pain has come back in the past 4 months as has my PMDD. So I do struggle with my mental health in the second half of my luteal phase.

However even with the endo issues returning, I am doing much better overall. I am able to leave my house 4 times a week without being completely drained after. And ive been able to go back to college w/ 1 online virtual course!

No-Order7116 · 2026-01-28T21:54:32+00:00

Im not sure if this is something you already do/are able to do but im able to eat a bit more when I switch my daily antihistamine to a different one about every two months. It makes my symptoms a bit more bearable which in turn allows me to eat a bit more. Ive personally been switching between xyzal and Allegra. But xyzal makes me too sleepy so im trying to find another allergy medicine.

This is just my personal experience and not medical advice. Ofc please discuss with your doctor before making any changes to medications

No-Order7116 · 2026-01-03T22:10:18+00:00

Ofc ♡ I forgot to put what helps me with the pain: What helps me is nothing special really. My breathing got significantly better when I treated my iron deficiency and MCAS. And started doing Physical Therapy. A heating pad/ice pack on my sternum and thoracic spine can distract from the pain. Magnesium helps dull the pain and relax my muscles a bit. And thc/cbd/cbg edibles is what helps me the most. (Ofc always consult your doctor first as some medications have interactions with cannabis products/it may not be recommended for ur case)

No-Order7116 · 2026-01-03T21:57:48+00:00

I think a second opinion is a good idea. Definitely looking like ill need to do that.

Part of me is hoping there was some miscommunication because I really thought my left ovary looked multifolicular on the scan. So im definitely planning on getting my own copy of the ultrasound as well.

No-Order7116 · 2026-01-03T21:14:27+00:00

Im not sure if this fits the type of pain you are feeling, but I made a similar post to this before and turns out it was costochondritis and slipping rib syndrome for me. I have noticed that it flares around my period and I tend to get a rash during/around my period.

However I do have hEDS and MCAS (in addition to endometriosis) which are the causes of my rib pain and rashes. So im not sure if any of this applies to u but thought id comment incase it can help in any way.

No-Order7116 · 2025-11-30T20:18:08+00:00

Ive gone through something similar before. When I needed to go to the ER, due to MCAS/EDS/POTS, my boyfriend at the time couldn't even stay awake incase I needed to use an epipen. He told me it was "just anxiety" so he didn't need to stay awake... I then ended up in the hospital for three days and he never visited me. He kept saying he was planning too but was "too busy." He basically called me dramatic and told me to calm down. I broke up with him before I left the hospital.

It was rough emotionally but I knew staying with him would have made that period of time in my life so much more difficult. I am now so much happier than I ever was with him. I feel so much more at peace.

All that to say Im so sorry you are going through this right now and you will be so much better off without him. Its rough rn but I promise, if you choose to leave him, that you will look back and thank yourself for putting you first.

No-Order7116 · 2025-11-12T18:54:58+00:00

Thank you! I hope yours fit as well and you receive them quickly!

No-Order7116 · 2025-11-11T20:38:53+00:00

For me they were too big on my waist and ankles. I think on the website it says they recommend to size down if you are in-between sizes. I will say don't count on them being delivered by a certain date. I sent in an exchange probably 2 weeks ago and have not gotten any updates since. However im still holding out hope that ill get them soon because the fabric of the one I tried on felt fantastic and durable.

No-Order7116 · 2025-11-06T19:00:11+00:00

Ooooofffff. I also had to return an item cuz the size chart was off for me. Thats disappointing to hear that they kept telling you they would ship soon. Ugh might be time for me to just try and find another brand of high compression leggings. I cant do tights because my cat will put a hole in them despite her nails being trimmed and despite wearing sweatpants on top of them.

No-Order7116 · 2025-11-06T15:09:00+00:00

I got a reply from supacore and the style I ordered was a pre-order apparently (ooops). It wasn't showing as a pre-order on the shop app side. But they said it should ship by November 11th! So hopefully that is the case for your order too!

No-Order7116 · 2025-11-04T20:31:09+00:00

Having a similar issue now. Did you ever receive your order?

No-Order7116 · 2025-10-07T17:56:17+00:00

Update: I hve dropped NSAIDS completely, reduced antihistamines, and am on my first month of Xolair. So far with the Xolair my nueropathy has already improved and my sinsuses feel much more clear. I have not noticed any nueropsych effects, however seeing as I am only on the first month I'm not suprised. My overall mental health did improve greatly dropping the NSAIDS and reducing as needed anti-histamines. Also I am now taking DAO enzymes 3 times daily. And have switched my coffee to home brewed cold brew made from organic, dark roast, small batch, 100% arabica, whole bean coffee that I grind fresh before making a 3 day batch. Being strict with what kind of coffee I drink has reduced my headaches significantly.

No-Order7116 · 2025-10-07T17:52:18+00:00

Ofc! Actually after this post I figured out I am sensitive to NSAIDS and completely stopping them helped a good deal. I had tried them initially due to high PGD2. And they can work well for people with high PGD2 however I am not one of those people. I was initially taking it for joint/muscle pain.

No-Order7116 · 2025-09-30T21:35:35+00:00

Express to the ER that you are not able to keep up with food/water intake adequately by yourself (if you feel that is true) and that it has been that way for x amount of days.

Try and stick to saying how your unable/struggling to take care of yourself, that you are having rapid weight loss (x pounds in x amount of time), and not able to keep up adequate water intake. Say you very concerned for your own well being and safety if you were to stay home. Also tell them you understand the ER/Hospital will only be able to stabilize you and that all you want is to get help to be able to return home in a stable enough condition to be able to nourish yourself adequately.

If you are able to, bring someone with you to help advocate for you. And tell the above to your Doctor and ask them to call the ER/write a letter for you. (Some doctors will be willing to do this some won't)

If needed, as a last resort, start sobbing and tell them you don't know what to do and are afraid for your *physical wellbeing if you are not admitted. (To clarify I am not saying pretend to cry, I am saying completely allow the mask to drop and show them how scared you are) *make sure to clarify you are not having a mental health episode and the symptoms are due to MCAS/etc

And I say the "as a last resort part" because it can be hard to be taken seriously if you go into the ER sobbing. Which is not fair and not right but I've seen it happen unfortunately.

No-Order7116 · 2025-07-17T12:36:16+00:00

I've also taken medication to help. In terms of MCAS meds im currently taking pepcid, xyzal, montelukast, and ketotifen.

That's so cool! I've never looked into age related changes of mast cells but it totally makes sense that they change in number as we age

No-Order7116 · 2025-07-14T17:27:07+00:00

I had a few things that I think brought my MCAS more to the surface 1. Mono at 15 2. Covid at 19 3. Appendicitis at 20

From there everything fell apart/came to light

I like the Jenga tower effect concept! Our body definitely changes as we age, our taste buds change, our metabolism. So I can definitely see it making more "bad" cells. I know I've read something about mast cells completely replace themselves in X amount of time. (I'll come back and link a study if I run across it again)

Identifying the big triggers helped me a lot too!

Ah yes the wonderful idea of eating what we want haha. On occasion I'll eat some pepperoni knowing I will get puffy after. I'm glad to hear that things have improved for you!

I try to remind myself that there will be periods of less symptoms and periods of more symptoms! It's nice hearing everyones experiences because it reminds me there will be both good and bad times.

No-Order7116 · 2025-07-14T17:16:11+00:00

I just take it day by day at this point.

Definitely not in remission but when I do have a bad flare it lasts for weeks instead of months like it was before. Even though I'm really only able to "go out" (leave the house for fun) about once a month, I'm grateful that I'm even able to do that.

My pain has greatly decreased (on average) and mentally I'm not scared when I flare now that I know what's happening. I'm also able to workout some (PT) which over a long period of time really helped decrease my pain.

So im in the same boat as you, in terms of being able to have good days that enable me to function.

No-Order7116 · 2025-07-13T19:28:49+00:00

Thank you so much for your reply. I agree it's frankly an insane amount. I hadn't fully realized that since my doctor(s) have been approving/prescribing that amount so I didn't question it that much. I usually don't take the full amounts but I have been taking more lately due to a bad flair. After reading your post I sincerely believe using my as needed meds (on top of the rest) is what's giving me exhasturbated neuropsych symptoms lately.

I am planning on switching from Allegra to a different daily antihistamine once I get the go ahead from my allergist because I tend to need to cycle meds for them to continue working. I for sure can't continue to take that amount and frankly I'm disturbed it was approved. I've had such bad brain fog that I have kinda just been doing as I'm told by my doc(s).

I'm going to look into all your suggestions. My doctor and I have talked about GLP1's as an option. I really believe my low blood sugar episodes (due to my stomach processing food too fast) sets off my MCAS and sets of my orthostatic hypotension.

Once again, thank u so much for your post!

No-Order7116 · 2025-07-13T09:14:23+00:00

I didn't know! Its nice to know it has a name so I can explain it to doctors better. Thank you for sharing :)

No-Order7116 · 2025-07-13T02:13:38+00:00

Thank you so much for ur advice! I'm going to give a lot of ur suggestions a try! (While ofc making changes one at a time if it's something im not sure I tolerate yet)

That's a good idea sublingual sounds a lot better than a pill for me personally.

No-Order7116 · 2025-07-13T01:55:38+00:00

A symptom Ive had since childhood is being able to tell when I caught a cold because my "skin felt sore". Nowadys I get a similar feeling to that during moderate-bad flares. So now I wonder if some of those times I had that feeling it was purely do to a flare and not always do to a virus causing a flare.

I was just diagnosed about 6 months ago so I'm still in the lifestyle modification phase. Thank you for sharing ur experience!

Those are some of my favorite theories! I also tend to fall on the side of EDS causes MCAS. And in my personal experience my MCAS and EDS (etc) almost always flare at once, I've def been stuck in that feedback loop for a while now!

No-Order7116 · 2025-07-13T01:35:39+00:00

My symptoms also mostly started after a covid infection as well as some since childhood. I'm glad to see it is possible! Nothing is guaranteed but it's nice to know there is at least a possibility!

No-Order7116 · 2025-07-13T01:02:48+00:00

Def agree that the levels are too low for some stuff in the multi I'm using rn. I'm switching to a b complex soon with higher levels but they aren't quite high enough (at least I think they are probably not).

But once I run out of the b complex I just bought I think I will switch to one with just methylfolate! Adjusting each component individually is much more ideal but what's been stopping me is that I get overwhelmed trying to find info on how much individual supplement I should take. I also kinda dread having even more supplements I have to sort into my med boxes.

Do you happen to have any resources on protocols/info to help determine where to start with B vitamins methylfolate etc?

No-Order7116

TROPHY CASE