My POIS was caused by MCAS

[itsmel]

I googled oral cromolyn sodium. I found that one the brand names is Nalcrom. It is used for food allergies. You have to eat it before you eat. It was one of the things on my list to ask my doctor to describe me.

You might want to show this therapeutic algorithm instead, see the supplementary material of this post:
https://poiscenter.com/forums/index.php?topic=2301.msg32708#msg32708

It's a docx file that can be downloaded for free.

I can not talk about these things to doctors, I can't even talk about my symptomatology because they can't handle it mentally. Most of my family members gave up on doctors and don't report anything anymore. Doctors are not on my level of knowledge when it comes down to this subject and don't take the effort to do so. Luckily I have no children who I have to expose to this scum society.

Yeah I totally understand about the doctors. You're not going to get anywhere if you keep seeing regular physician, you have to talk to an MCAS specialist. They would know what to look for, test needed and medications to try.

[Nas]

Sorry let me rephrase that. Some people who has POIS also have nasal congestion which I believe due to histamine release causing vasodilation. The spray has the active ingredient cromolyn sodium but this is used for nasal only opposed to the oral that cost way much more.  If you feel relieve from the spray, there might be a chance you have issues with histamine. Trying the spray is just an inexpensive self test.

So wait, does it only help only for nasal congestion or for brain symptoms as well?

[itsmel]

Sorry let me rephrase that. Some people who has POIS also have nasal congestion which I believe due to histamine release causing vasodilation. The spray has the active ingredient cromolyn sodium but this is used for nasal only opposed to the oral that cost way much more.  If you feel relieve from the spray, there might be a chance you have issues with histamine. Trying the spray is just an inexpensive self test.

So wait, does it only help only for nasal congestion or for brain symptoms as well?

Hey Nas,

Yes it does help with brain fog! Probably because I partially ingest though the nose during the spray but since I took the oral version of it which is more effective. I now only use the nasal spray for the congestion.

[Iwillbeatthis]

How does the oral form come in is it in tablets? My doctor said the tablets aren't absorbed by the body and are only for food allergies? does the oral version get rid of brain fog from POIS that is the main symtpom from POIS

[Clues]

Hey itsmel!

Thank you so much for your detailed post. I suspect I have MCAD or Mastocytosis and I'm currently being diagnosed. From what I've seen of research so far, antihistamines and Cromolyn Sodium often seem to be considered side by side as potential treatments in this context. It sounds like you've tried both pretty thoroughly and Cromolyn Sodium is the knockout winner, is that fair to say? Gathering some data for when it's time to talk treatment with my specialist.

EDIT: Hmm, CS is not an approved medication here in Norway, so my specialist will have to apply for an exception and put his license on the line for me to try it. :/ Still, I'll talk to him about it when/if he reaches a diagnosis.

[orlands]

Water and salt is the best anti histamine possible accordin to batemanghelid in youtube.
I'm trying to tell but nobody listens

[Muon]

My doctor said the tablets aren't absorbed by the body and are only for food allergies?

It stabilizes GI mast cells. It can prevent these cells from dropping molecules into systemic circulation. CS itself isn't systemically absorbed. Not only food but also stress (and POIS???) can activate GI mast cells.

[Going less Crazy]

Long time since I posted. After looking into mcas and these posts initially, I decided to order nasal cromolyn sodium for my food "allergies" and perceived overactive immune system. I'm still on my diet and do not experience pois as related to orgasm (unless I veer from the diet) but a lot of particularly new or unknown things I eat will keep me up all night and this is a huge problem.

For example say citric acid if I have any bit of it I will be up sweating all night. I tried 2 Benadryl at this time after I had ingested citric acid recently and sadly it didn't make a single dent in my symptoms, did not even feel tired at all. So I'm mainly looking for something I can take long term to prevent this reaction in the first place.

I got the nasal spray today and took my first dose about an hour ago and initially I notice a slight calming effect, could be placebo but I tend to feel things quickly. This post is way way too early to tell you the effects it has on me, it's more of a tell yall what I'm doing post. But I will let you know the outcome in the future. Basically if I can find something to help me sleep after I ingest something I have problems with I'd be elated.

[demografx]

Hi, GLC.

[Going less Crazy]

Hi, GLC.

Hi!

[Muon]

I decided to order nasal cromolyn sodium for my food "allergies" and perceived overactive immune system.

The oral form is used for food sensitivities/triggers. Dosage: 100 - 200 mg, two to four times a day 30 min before a meal. This has to be build up slowly (don't start with minimal dose but build up towards it and go from there) and need to be taken for at least 4 weeks. The minimal dosage is 100 mg*2 = 200 mg/day. Max dosage would be 200 mg*4 = 800 mg/day.

Nebulized form for nasal/sinus problems: 20 mg, two to four times a day. Ref

[Muon]

"...while stimulation of brain and nasal MC leads to activation of the hypothalamic‐pituitary‐adrenal (HPA ) axis." Ref

[Quantum]

Hi Itsmel,
I am glad that you have found relief for your POIS symptoms

It's been over 4 months now that you shared your great results with oral cromolyn sodium.   Do you still have the same great results?   Have you been able to continue buying oral cromolyn sodium ?
If you are still POIS-free, it would be interesting to had you in my POIS Types Chart, so, let me know.

I have never tried oral cromolyn sodium ( not available in Canada), but I still take quercetin quite often, and I take Vitamin C daily, because it helps eliminate histamine surplus ( by being a cofactor of DAO, among other things).  I had no allergy symptoms, this spring, thanks to my overall healthy habits, but also thanks to quercetin and vitamin C.

[Legendary_animal]

Hi Itsmel,
I am glad that you have found relief for your POIS symptoms

It's been over 4 months now that you shared your great results with oral cromolyn sodium.   Do you still have the same great results?   Have you been able to continue buying oral cromolyn sodium ?
If you are still POIS-free, it would be interesting to had you in my POIS Types Chart, so, let me know.

I have never tried oral cromolyn sodium ( not available in Canada), but I still take quercetin quite often, and I take Vitamin C daily, because it helps eliminate histamine surplus ( by being a cofactor of DAO, among other things).  I had no allergy symptoms, this spring, thanks to my overall healthy habits, but also thanks to quercetin and vitamin C.

Also can you or somebody paste the link to the post of his POIS symptoms? I am new to this forum and can't really find it. My symptoms are all cognitive and noting physical. Although I have Sinusitis and catch cold and allergy very easily, with weather change or dust, pollen grains, etc

[hurray]

Also can you or somebody paste the link to the post of his POIS symptoms? I am new to this forum and can't really find it. My symptoms are all cognitive and noting physical. Although I have Sinusitis and catch cold and allergy very easily, with weather change or dust, pollen grains, etc

His symptoms are in the first post in this thread.

[drop247]

Oral Sodium Cromolyn is available in Canada. Shopper's Drug mart pharmacy was able to get it for me and so can Guardian. With prescription. Without private insurance I doubt you'd like to pay for it though. I understand it's very expensive.

[hurray]

Here's a interesting video with somebody who took sodium cromolyn for a couple of months to help her Mast Cell Activation Disorder. She describes the effects in detail. For her at least, the side-effects seem a bit brutal.

https://www.youtube.com/watch?v=ISoPurCZ1AA

[berlin1984]

My doctor said the tablets aren't absorbed by the body and are only for food allergies?

It stabilizes GI mast cells. It can prevent these cells from dropping molecules into systemic circulation. CS itself isn't systemically absorbed. Not only food but also stress (and POIS???) can activate GI mast cells.

I found this post on reddit interesting:

Cromolyn sodium contributes to far more than just relief of gastrointestinal symptoms. Given that the majority of the entire body's mast cells are in the gastrointestinal tract, (yes you have more mast cells in your GI tract alone, than the rest of the body combined, by a significant margin), the sheer volume of mast cells who's degranulation is inhibited by the cromolyn makes a significant dent in multiple feedback loops. The most relevant is likely the histamine feedback loop, as the mast cells themselves have all four known histamine receptors. So histamine ends up functioning both as a mediator that regulates effects and as a trigger for the further degranulation of other mast cells. (This is a large part of why high histamine foods can cause symptoms that can be traced back to other mediators such as elevated PGD2, or symptoms consistent with the release of say TNF-a). Interrupt a lot of histamine that is being released from the intestinal tract, and you see results elsewhere.

A lot of people on cromolyn notice it significantly helps symptoms such as reducing itching, or helping with insomnia, or other symptoms that are in no way GI related. The common metaphor is "It helps a ton by lowering your histamine bucket." A more accurate metaphor would be comparing it to lowering the control rods in a nuclear reactor. As the mast cell histamine feedback loop better resembles a chain reaction. However histamine isn't the only mediator that mast cells both release and have receptors for. It's only 1 single feedback loop of many.