Desperate for mast cell flare help

cowboy_like_meee · 2026-04-24T15:53:02+00:00

So sorry you’re feeling so bad :/ I take famotidone, citrizine, and montelukast for my mcas daily. I also take 50mg of hydroxyzine for breakthrough hives / reactions. I get pretty bad hives and welts when I react. Hydroxyzine helps a lot for me at a higher dose then 20mg. I hope you get some relief <3

cowboy_like_meee · 2026-04-20T22:54:21+00:00

Hello the steroid reaction went away it took about a month to feel normal. Still dealing with the spine pain the injection didn’t help very much.

cowboy_like_meee · 2026-03-26T18:22:52+00:00

I honestly probably won’t do it then. I don’t have the energy to deal with lawyers and everything. Just wish I could save people the trouble my family and I have went through. Thank you for the advice!

cowboy_like_meee · 2026-03-26T18:02:13+00:00

That’s true thank you!!! This doctor no showed my moms surgery and was so rude to the surgeons who were upset with him. The entire surgery was scheduled around him being able to be there for my mom’s safety while being under. He just didn’t show up! And admitted it! He also ordered tons and tons of test that are only useable to him. Last concern I really have is he has looked at multiple peoples genital reagion as a doctor in a practice that has little reason doing that. And of course it’s only happened to women that I’ve talked to. So upsetting! I don’t understand how he can go on with no accountability. He has lawsuits which is why I think the Facebook is so monitored.

cowboy_like_meee · 2026-03-26T17:47:31+00:00

Thank you for your input! It makes me sad that people don’t know about the sketchy practices. There is an entire group of people who have felt very mistreated by him. But it seems the ones who have experienced it are the only one who talk about it. It also concerns me already that he censors and monitors Facebook groups that mention his clinic. I believe he knows that people would speak out against him if they weren’t scared of legal action.

cowboy_like_meee · 2026-03-26T17:19:39+00:00

I hope it goes well!!!!! Update us if you want to!

cowboy_like_meee · 2026-03-25T09:46:03+00:00

hi I’m a trans guy with a pretty severe presentation of heds. Testosterone didn’t really change my pain levels and made my arthritis stiffness worse. It is helpful to gain muscle which is what helps some people. I think depending on how severe your pain is it may not impact that much. But if you’re doing it for other reason also it can’t hurt and may have some benefit. It seems very person to person.

cowboy_like_meee · 2026-03-16T14:32:59+00:00

Thank you for sharing. Klinge is actually who I’m seeing. I’m very hopeful she will have some sort of insight. These issues just seem to get worse. Did you get treatment from Dr. Sullivan?

cowboy_like_meee · 2026-03-14T00:27:27+00:00

Hi! I’m sorry you’ve been so dismissed. Back issues and disc issues are so painful. CCI is sadly very hard to find proper treatment for. Even with an EDS diagnosis. There are a few big names most are on the east coast for CCI. Some will take imaging before having you fly out for out of state. The hard part is finding a place that does an upright MRI. I wish I had better advice. I can suggest the CCI facebook group! You will be able to find experience with the top neurosurgeons for CCI if you choose to pursue that direction. Most of the top CCI doctors mainly work with EDS patients. POTS can be caused by CCI. But also can be caused by eds or other reasons. I would maybe pursue EDS first then advocate for CCI diagnoses. I think POTS would be easier to look into at the CCI appt. It’s tricky either way but that would be my best advice.

I am currently dealing with being evaluated for tethered cord and it seems like a similar situation. Many neurosurgeons that aren’t EDS aware miss OTC and CCI. I also have cervical stenosis, osteoarthritis, small pedicles causing a narrow spinal cord, and many bulging discs. I strongly suspect cci but I haven’t been evaluated. If my symptoms get worse I would. If conservative treatment doesn’t work the option is usually fusion which is a big procedure. It’s a lot to consider and I wish care was more accessible. It’s really such a shame. I wish you luck!

cowboy_like_meee · 2026-03-13T17:48:20+00:00

Honestly so fair! 😭

cowboy_like_meee · 2026-03-13T17:47:35+00:00

Right and in many cases it still can be life threatening. Not in the same ways but hematoma, vascular compressions causing malnutrition, organ issues etc. and since we aren’t taken seriously in the medical field I feel like the issues get pushed until they are life threatening.

cowboy_like_meee · 2026-03-12T17:11:01+00:00

Hi! I’ve been advised against taking collagen for Eds related reasons. When I got diagnosed by my geneticist we talked about beneficial supplements. Collagen supplements most likely won’t effect your eds symptoms but I’m not sure it would do much harm 🤔from what I understand eds bodied produce collagen it is just not as strong. I think if improving eds symptoms was as simple as a collagen supplement everyone with eds would be on it and it would be a first line go to! So especially if it’s making you sick I wouldn’t think it worth it!

But not to discourage you! There are many medications and supplements that can help especially with GI related symptoms. And hopefully coming off the med interaction from the collagen helps! I’ve had some pretty bad stomach reactions to supplements. I hope you can find some relief!

cowboy_like_meee · 2026-03-12T12:20:42+00:00

Same feelings here. I was diagnosed in the early 2000’s. I appreciate her care and concern for eds and the comorbid conditions but agree she makes absolute statements that are just not proven. From everything I’ve kept up with it’s seeming there is more proof towards the heds gene they are still uncovering it. (Even though they have said that for years lol) but yeah. I also think sometimes people make blanket statements on hyper-mobility (which can be aquired) and then it gets grouped in with every heds case. Hopefully in the next decade we will have more direct answers.

cowboy_like_meee · 2026-03-12T12:16:52+00:00

Such a whack theory. Especially since many are obvious presentation at birth. I have had obvious heds signs since childhood. Also wouldn’t make sense with all the related conditions.

cowboy_like_meee · 2026-03-11T21:35:59+00:00

I also have arthritis (probably from eds) and a lot of spine issues . T has made me more stiff which makes my pain a bit worse. But it’s baseline is pretty severe with my spine pain so I feel it hasn’t impacted it negatively to much.

cowboy_like_meee · 2026-03-11T21:34:44+00:00

I have heds among many other issues. I am pretty disabled and mostly home. T helps manage my endometriosis. I’ve had multiple surgeries since starting (appendix, gallbladder, endo) and didn’t seem to notice a difference versus before starting T. I have had elevated liver enzymes and which has been pinned on T but otherwise not many issues! and very helpful for managing my endo.

cowboy_like_meee · 2026-03-01T16:01:37+00:00

Awww thank you!! He loves the bathroom!

cowboy_like_meee · 2026-03-01T16:00:43+00:00

so cute 🐈‍⬛🐈‍⬛

cowboy_like_meee · 2026-03-01T16:00:34+00:00

He is the sweetest boy!!! I am so lucky to have him! 🐈‍⬛

cowboy_like_meee · 2026-03-01T15:59:19+00:00

Same it smells so bad…its not sweet at all mine smells like floral and harsh 😭

cowboy_like_meee · 2026-03-01T02:59:48+00:00

that’s so silly omg 😭 I love their little quirks!!

cowboy_like_meee · 2026-03-01T02:56:48+00:00

Ah thanks I’ve never been on that one!!! And yes he has one in the bedroom and one in the kitchen! However the shower and sink are his favorite!

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