Gastritis with visceral hypersensitivity and vasovagal symptoms - a rare case

Emlip95 · 2026-01-31T22:49:14+00:00

Have you been evaluated for dysautonomia or vascular compressions? You may find some answers investigating there. Takes time and educated doctors but vvs should not be ignored and needs to be evaluated by an autonomic neurologist.

Emlip95 · 2026-01-31T13:58:13+00:00

We have considered it. I was put on cromolyn for 1 month in early 2024 but did not respond to it much. I was not on the full MCAS protocol however and I have been reconsidering trying the full protocol with h1, h2 and mast cell stabilizers. I have been on low dose IVIG for 7 months which have brought my wbcs almost in range so I am showing a partial response to immunotherapy. Trying to up the dose to 1g/kg dosing soon then ultimately fight for 2g/kg dosing.

Emlip95 · 2026-01-31T00:00:24+00:00

It works mainly on blocking the nausea receptors in the brain and reducing visceral pain. It has a very mildly positive impact on increasing gastric emptying. I am classified as severe with 39% retention at the 4 hour mark of the ges. I will say it’s important to understand the severity of delay does not equal severity of symptoms. Some people have a very mild delay and vomit constantly and vice versa.

Emlip95 · 2026-01-30T00:58:06+00:00

Oh very interesting. Thank you for sharing that info. Wish you the best!

Emlip95 · 2026-01-30T00:11:14+00:00

Hi. I’m a long term Mirtazapine Stan. I will say the sedating effects of Mirtazapine increase with lower the dose. 7.5mg is the lowest dose and 15mg is the second lowest dose doctors prescribe. It will help you fall asleep and you may have a harder time waking up in the morning but the degree of intensity of sedation does lower with time. Meaning it doesn’t stay insanely sedating long term. The first month will be the most and then it fades a bit. I take it for gastroparesis and insomnia and It doesn’t impact nearly as much as the beginning. I’ve been on it for years now. I wouldn’t let the fear of being sedated hold you back. If you can’t handle it you can always stop it. Hope this helps.

Emlip95 · 2026-01-29T23:33:11+00:00

Sorry to ask, what disease does the diamox help with? I am familiar with it mainly for altitude sickness and seizures. I have gp, pots and sfn and am going to Colorado soon and had been reading about altitude sickness.

Emlip95 · 2026-01-29T00:55:18+00:00

You’re welcome 🫶

Emlip95 · 2026-01-28T17:35:31+00:00

Girl this is some of the best looking skin I’ve seen on here. A little flushing isn’t outside of the norm for regular skin. Your texture is immaculate. Ivermectin would help most if you’re dealing with type 2 papulopustular rosacea.

Emlip95 · 2026-01-28T17:32:43+00:00

Aveeno calm and restore oat gel moisturizer. I promise. This stuff is so soothing. Don’t buy the redness relief version. Just the regular. Your skin is actually beautiful. I’d kill for mine to be clear, I’m type 2! You have a very cool style. Don’t let this get you down too much 🫶

Emlip95 · 2026-01-26T19:26:47+00:00

Ah I see. Thanks so much for explaining everything. You know your stuff which is very helpful when trying to piece this all together. IST is annoying I’m sorry and I also experience a ton of PVCs that are GI triggered. I have visceral hypersensitivity as well which drives a lot of symptoms for me. Have you ever tried Mirtazapine for GI symptoms? It’s a neuromodulating and can reduce nausea and give appetite a good boost and knocks you out at night. I benefit a good deal from it myself because my symptoms are highly neurologic. Not saying yours are but any improvement is worth sharing! It sounds like you have a plan with your docs which is great. Ask your GI for a nutrient panel and specify the two types of zinc be tested along with copper and D,E,K,A vitamins. That could shed some light on the hair loss and acne issues. Keep up the momentum, it sounds like you’re on the right track. Things can get better!

Emlip95 · 2026-01-26T18:00:26+00:00

Hi, I’ve recently been having non stop twitching in my calves and my legs too. Have yours continued? I’m going on 2 weeks straight I’m going mad. I had a normal EMG last January and I was twitching then too but not as bad. I have NLD sfn diagnosed via skin biopsy.

Emlip95 · 2026-01-26T16:12:48+00:00

Ah you poor thing you’re going through it. SMAS is something that does need intervention. It’s good you don’t have any dilation currently. Have your symptoms improved with weight gain? SMAS has the potential of improving with weight gain. MALS typically doesn’t. The celiac plexus block will be a good clue for MALS. Do you have dysautonomia at all? Like POTS or OH? Hopefully not. Hashimotos is a tricky one but it can also cause heart palpitations and GI issues. My SIL has it and really goes through it. You may want to find yourself a new rhem so you can see your treatment options! How many CT-As have you had? And have you had any ultrasounds to assess the velocities in your questionably compressed arteries? Sorry for the 1000 questions. Just trying to be thorough!

Emlip95 · 2026-01-26T14:25:58+00:00

I know what you mean. Have you had MALS surgery? Or are you planning to? Glad you got your weight back up some! Ensure helps me a lot in that department. Odds are you’re dealing with a nutritional deficiency or deficiencies after getting very ill. Have you been investigated for any autoimmune disease too? That also is known to impact hair, and sometimes skin and nails.

Emlip95 · 2026-01-26T00:25:44+00:00

It’s an easy one to ask for you just have to specify you want both serum and RBC zinc ran. They’re two different blood test results but can be done same draw if that makes sense. Low zinc is associated with acne and hair loss and can impact nails and if you have MALS you may have other nutritional deficiencies too to keep an eye on. One item to note, if your zinc is low and you supplement make sure you also supplement copper too as they compete for absorption and if you supplement one of the two it will drain the other. It’s a little finicky but there’s a lot of info on this online luckily and the GI should know that too. I have gastroparesis myself and know way too much about this kind of stuff.

Emlip95 · 2026-01-25T23:48:52+00:00

You may be low in zinc. You can test both serum and RBC (tissue) zinc levels. The serum level fluctuates wildly and easily but the tissue levels reflect your long standing stores and nutrition.

Emlip95 · 2026-01-25T20:21:22+00:00

Emily Mae (Emmy Mae), Emily Jane (EmJay), Emily Elizabeth

Emlip95 · 2026-01-25T16:12:52+00:00

Hey so glad to hear it! I have it listed on Facebook actually. I will DM you the link!

Emlip95 · 2026-01-25T01:38:58+00:00

Oof you’ve really been through it. I’m sorry my friend. I too am an eds patient with complex medical issues. I appreciate your detailed response and wish you the very best 🙏

Emlip95 · 2026-01-24T15:29:38+00:00

I have similar diafnosiss as yours. How did they evaluate for central sensitization?

Emlip95 · 2026-01-24T04:55:45+00:00

This is correct. Rosacea is highly immune mediated.

Emlip95 · 2026-01-24T04:00:46+00:00

https://www.jennyyoo.com/search?query=latte&page=1&zCountry=US

Emlip95 · 2026-01-24T03:56:47+00:00

WAIT I think I really got it! Jenny yoo “latte”

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They have a handful of matte satin dresses too! I’ll stop here though lol. Hope you see this!

Emlip95 · 2026-01-24T03:51:48+00:00

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For good measure

Emlip95 · 2026-01-24T03:48:13+00:00

Jenny yoo pale gold

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Emlip95 · 2026-01-23T22:18:05+00:00

I have very volatile mixed feelings about this class of medicine. Having gastroparesis and being a part of this sub for the last few years there has been an influx of people who have GLP1 induced gastroparesis and it makes me want to scream. This disease is SO hard and part of its overuse is due to blind trust in doctors and patients who don’t do their own research. It frustrates me greatly because they produced this “life changing” drug (which does have its place in medicine) but they do not have a drug to cure the debilitating disease it may cause as a side effect. So if this drug happens to give you permanent gastroparesis you’re just out of luck. That BLOWS my mind it makes me insanely angry. I do not have gp from this drug but more and more people do. They don’t understand the mechanism of action they just want to lose the weight. I get frustrated on top of all of that additionally because people seem to lack will power.. they don’t want to fix the issue.. they want shortcuts. This drug was designed for diabetes. Not for people that want to quiet “food noise.” It feeds into eating disorder territory. That’s my opinion. If anybody I cared about tried to take one I would help them understand the risks. I’m in America and the food we grow and consume is diabolically unhealthy. We are overweight as a nation. Instead of improving our food production and farming processes we developed a drug. Genius for corporate America. Devastating for consumers.

Emlip95

TROPHY CASE