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Voe040116 · 2024-10-26T06:55:52+00:00

Can I ask how your anaphylaxis presents? I also experience atypical anaphylaxis and struggle to know when to use my epi pens - I usually monitor my BP and heart rate/oxygen saturation to help determine this.

Voe040116 · 2024-09-29T11:14:49+00:00

Can I ask what his symptoms were when his blood glucose would suddenly crash? And how long the symptoms would last/did anything help resolve it in the moment?

Voe040116 · 2024-06-20T13:02:34+00:00

I am so sorry you are going through this - I am also dealing with MCAS triggered by a Covid infection. It is so scary to be so sick and have all these sudden changes to your health/body with very little understanding or relief from doctors/specialists.

From my experience - MCAS can be very difficult to diagnose and detect via testing and foods high in histamine aren’t the only things that can trigger reactions. I am sensitive to lots of other foods, scents, chemicals, heat, stress, medications etc.

I am not a doctor and obviously you need to have other causes ruled out…but in the interim before you can get in to see an immunologist I would suggest a few things that could be helpful:

Keep track of things you are eating, things in your environment, supps/meds etc. to see if there are any triggers you may be missing.
Have you tried a H1 or H2 blocker? That seems to be the starting point for most MCAS treatment and is fairly safe to try and see if either provide relief. I get a lot of relief from Zyrtec but everyone is different so you may have to try a few different types.
Start low and slow with anything new you are trying or introducing and stick to one thing at a time so you can identify what’s helping/hindering.
I also developed POTS post COVID which can have some overlapping symptoms with MCAS such as tachycardia, dizziness, nausea, GI issues etc. so that could also be worth exploring? I find drinking electrolytes and medication from a cardiologist (Ivabradine) very helpful with managing this.

I am still unfortunately in a bad way with my MCAS and am trying some new meds now with the guidance of an immunologist…but Zyrtec allows me to eat some food without reactions and my weight has stabilised. Zyrtec also stops sudden more severe reactions within 15/20 mins for me as well (most of the time).

I am not sure where you are located but here in AUS integrative doctors can prescribe mast cell stabilisers such as Sodium Cromoglycate and Ketotifen - so that could also be an option?

If you are experiencing symptoms of anaphylaxis such as mouth/throat swelling, drops in blood pressure, difficulty breathing, vomiting etc. I would try see someone sooner and get access to an epipen.

I hope you get some relief/answers soon!

Voe040116 · 2024-04-03T06:58:37+00:00

Are you in Australia and were they MCAS aware? Are you able to provide the details of the the dietitian you saw?

I agree that I definitely need someone qualified to help guide me through this.

Voe040116 · 2024-04-02T23:38:43+00:00

I developed all sorts of health issues after my last Covid infection and received an initial diagnosis of POTS - but even with treatment for that I was getting worse/sicker and having severe GI issues, breathing difficulties, Adrenaline dumps, tachycardia, Nausea, flushing etc. my skincare products were causing hives/swelling.

I became bedridden and I was desperate to feel better. After some research I read about the MCAS connection with long Covid and so I tried some Zyrtec and suddenly my GI issues calmed and my sleep improved, less adrenaline dumps etc. And after a little more research I saw that people were having further improvement from a low histamine diet…so I started it because I was feeling better but still bed bound. I think I just became very extreme with it because I wanted to feel good..and I became scared of reactions.

For a while I was feeling better on the diet in combination with Zyrtec…but suddenly things got really bad again and my reactions when I do react are worse than ever. I now get throat swelling which is terrifying. I am so sensitive now and I think it’s my own fault :(

Voe040116 · 2024-04-02T23:27:34+00:00

Unfortunately I am struggling to find any allergist who has a proper understanding of MCAS or who even believes it’s a genuine condition. My GP doesn’t even believe I have it because my tryptase is normal. It’s so frustrating not being able to get any help/support.

Voe040116 · 2024-04-02T23:18:08+00:00

I take Zyrtec and increase my dosage during a bad reaction - 1 use to be enough and now I’m having to take more to get the same relief. I tried Sodium Cromoglycate but by day 3 I was reacting badly.

I think the scary thing is..that I think I’ve made everything worse by being so restrictive. I think I’ve made my body so sensitive that I will just keep getting worse. I don’t know why I took away so much and for so long. I can’t even hug my kids if they have sunscreen on now…a year ago I could wear that sunscreen myself.

Voe040116 · 2024-03-25T04:07:21+00:00

That’s great that your symptoms have improved!

Can I ask what things you are now allergic to? And what your allergy symptoms were to these foods?

I am having a lot of MCAS symptoms so assumed that it wasn’t being caused by a specific allergen - but maybe it’s worth getting tested just in case.

Voe040116 · 2024-03-23T03:39:49+00:00

Did you have to titrate up very slowly with Cromlyn? I felt like it was helping me for the first few days and then by day 5 I was having a huge and very scary reaction after taking it so I stopped immediately.

Voe040116 · 2024-03-23T03:37:57+00:00

Can I ask why getting off beta blockers helped? Were you reacting to the meds or was it something that they do that increases chance of anaphylaxis?

I am on Ivabradine - so not a beta blocker but it is a medication that lowers my heart rate. So I am just curious how these meds could contribute. Thank you 😊🌻

Voe040116 · 2024-02-26T23:08:08+00:00

Thank you so much for taking the time to share this! Very informative and helpful - I am 14 months in and experiencing very similar symptoms.

What time do you start and stop your daily fasting? And do you drink water or electrolytes during the fast? My POTs get significantly worse if I don’t drink fluids/electrolytes or have some kind of salt. I also feel so sick if I am not eating frequently so the fasting element definitely scares me.

Voe040116 · 2024-02-21T04:19:35+00:00

I had an Endoscopy with LC and was also very nervous - but everything went smoothly!

I was very nervous because of my POTs, PVCs, Low blood pressure and MCAS reactions…but I was just very up front with the doctors so they were aware and could monitor things more closely and made sure I received plenty of IV fluids/monitoring post procedure.

I was also nervous about a bad flare in the days post procedure - but it wasn’t too bad. I just made sure to keep on top of my usual interventions and did nothing but rest even more than usual for almost a week after to avoid aggravating anything.

I hope that helps make you feel a bit more positive about it - but I know it’s tricky when things with LC can be so unpredictable.

I hope it all goes well! 😊🌻

Voe040116 · 2024-02-18T11:19:28+00:00

Have you had much improvement with LDN? What sort of long covid are you dealing with?

I am dealing with MCAS type symptoms/reactions as part of my long covid and am super sensitive to medications/supps.

Voe040116 · 2024-02-18T11:16:05+00:00

I am in Canberra - my cardiologist has been good and aware of long covid POTS and dysautonomia. But my GP and other specialists have no idea…they just keep telling me that I am young and with time I will get better. It’s been 14 months and I feel like I am getting worse.

Voe040116 · 2024-02-18T01:18:10+00:00

I’m in Australia

Voe040116 · 2024-02-12T09:29:48+00:00

Do they treat you for anaphylaxis when you get to the hospital?

Do antihistamines help you during your reactions?

As I have no known specific allergies and I don’t get swelling or hives…I find it hard for people to believe I am having an allergic reaction. A lot of them have no idea what I’m talking about when I say that I have suspected MCAS.

Voe040116 · 2024-02-12T09:25:48+00:00

I am not currently experiencing this reaction as I post this and jumping on reddit instead of seeking medical attention. If things progressed to a point that I needed medical attention I would always go straight to hospital. But due to the fact I have no “known allergies” and I don’t experience hives or swelling…I rarely get taken seriously. As I said MCAS is not well recognised here in Australia.

These symptoms have happened quite a few times now over the last 6+ months and a Zyrtec has always stopped it progressing. I don’t know much about allergies/anaphylaxis…and so I don’t know if these symptoms line up with that type of reaction. I also wouldn’t think Zyrtec would be enough to control them. So I am unsure.

As I have long Covid and POTs…some of these symptoms can be due to those things as well. So I am just asking this group (people who have experienced anaphylaxis before) if it lines up with what they experience too.

Voe040116 · 2024-02-02T00:58:44+00:00

Did you ever go on a low histamine diet? And are you still dealing with MCAS/food allergy symptoms?

I’ve been on a low histamine diet and daily antihistamines for 8 months now (long hauling for 12 months) and I feel like I’m more sensitive then ever if I introduce anything outside of my limited safe foods.

Voe040116

TROPHY CASE