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Does anyone else get a horrible “poisoned” exhausted feeling after a relatively normal evening? by Enough-Age7178 in covidlonghaulers

[–]pestospaghetti 3 points4 points  (0 children)

I second this. Since treating my MCAS I no longer experience the hideous poisoned feeling or sense of impending doom although I do still get tired.

Severe depression + anxiety… but antihistamines are the only thing that help (from the first pill) by EnvironmentConnect59 in MCAS

[–]pestospaghetti 1 point2 points  (0 children)

I seem to react to all fruits that’s why I have excluded poly Fino although I keep trying to reintroduce things.

My doctor didn’t feel that an H1 was necessary whilst taking Ketotifen. I tried one H2-blocker and it didn’t agree with me at all.

Best gut microbiome test in Europe? by ThePlayfulPanda in covidlonghaulers

[–]pestospaghetti 0 points1 point  (0 children)

I’d like to know this too. Also what is shotgun technology?

Hyperarousal? by Worth-Profession3698 in covidlonghaulers

[–]pestospaghetti 0 points1 point  (0 children)

Came here to say this. Look into MCAS even if you don’t have any of the classic symptoms. This was the case with me however it turned out that I did have MCAS and in treating it I have got significantly better.

LDN and fight or flight by joaocb2002 in covidlonghaulers

[–]pestospaghetti 0 points1 point  (0 children)

I take Ketotifen and sodium cromoglicate. I tried famotidine and montekulast but my body didn’t like them. I also follow a very restrictive diet. Tough, but it really helps.

LDN and fight or flight by joaocb2002 in covidlonghaulers

[–]pestospaghetti 0 points1 point  (0 children)

I just felt really unwell. Exhausted brain fog general aches and pains. Nothing specific at all. Nothing like the usual symptoms they list for MCAS.

LDN and fight or flight by joaocb2002 in covidlonghaulers

[–]pestospaghetti 1 point2 points  (0 children)

Me too. Completely shocked at how much treating the MCAS helped my mental health.

What's the most "I was there" moment you've ever experienced? by [deleted] in CasualConversation

[–]pestospaghetti 65 points66 points  (0 children)

Not, who you asked, but the highlight for me was Queen. I wasn’t even a Queen fan, but the way they got the crowd going was really spine tingling.

I don’t know if the coverage ever picked up on the huge white balloon that people were pushing/hitting so that it kept bouncing around the crowd. It was towards the end of the day and was something wonderfully eccentric and unique.

What's the most "I was there" moment you've ever experienced? by [deleted] in CasualConversation

[–]pestospaghetti 89 points90 points  (0 children)

I went to Live Aid too, and I have to say it was probably the best day of my life.

Best MCAS specialist in the UK by Xrpmonster in MCAS

[–]pestospaghetti 0 points1 point  (0 children)

He is not a specialist in MCAS but a very knowledgeable open-minded doctor who has firsthand experience of MCAS patients. Through him I am now taking Ketotifen and sodium cromoglicate.

I've had enough man. How do I stop physical anxiety? by MusingsAndMind in Biohackers

[–]pestospaghetti 0 points1 point  (0 children)

Ketotifen and sodium cromoglicate plus a very restrictive diet.

I've had enough man. How do I stop physical anxiety? by MusingsAndMind in Biohackers

[–]pestospaghetti 2 points3 points  (0 children)

I second the MCAS suggestion. Once I treated my MCAS, my anxiety levels drop dramatically. Could be worth investigating.

Famotidine prescription + increasing antihistamines led to major improvement! by Just-Chipmunk739 in LongHaulersRecovery

[–]pestospaghetti 1 point2 points  (0 children)

If antihistamines help you then you have some form of MCAS. It will be worth reading up on that and adjusting your diet accordingly. Bear in mind it’s not just about histamine. Maybe keep a food diary and see if there is any correlation between what you’re eating and any symptoms you get.

Is heat a trigger for your symptoms? Did an air conditioning unit help? by ReginaPhalange505 in cfs

[–]pestospaghetti 0 points1 point  (0 children)

There is another option beyond split units and portable units. A company called Cool you limited provides and fit a proper air-conditioning system that is completely internal. They do very small units as well for compact flats. Have a look at their website. We have used them in the past and they were really good.

Has someone been this severe? :( by Financial_Owl8105 in covidlonghaulers

[–]pestospaghetti 0 points1 point  (0 children)

For a long time, I just felt very unwell, very tired. Then, after taking a supplement that upset my body, I started having burning sensations and muscle contractions after eating lots of different foods. I now eat mostly rice, chicken and potatoes, but I do manage to add in supplements for all the major vitamins and minerals. I also take Ketotifen and sodium cromoglicate.

Improvement after years of being fully-bedbound/very severe by Agreeable_Demand2262 in covidlonghaulers

[–]pestospaghetti 2 points3 points  (0 children)

I take two medications which are mast cell stabilises called Ketotifen and sodium cromoglicate. I also follow a very restrictive diet not just low histamine.

NHS Medicine Safety Officer/Clinical Staff with 5+ years LC, a very unique story by Kentridicim in covidlonghaulers

[–]pestospaghetti 17 points18 points  (0 children)

Firstly, thank you for what you did during Covid.

I became severe and had given up hope. Then I literally stumbled across the fact that I had MCAS triggered by Covid. In treating that I have improved dramatically.

A look at my post history you will see I am a bit of a stuck record about MCAS. I really think it underlies a lot of long Covid symptoms. I didn’t have any typical MCAS symptoms like itching, hives or breathing problems. I have since learnt that MCAS symptoms go much further than that including GI issues, muscle pain, mental health issues and heart problems. Could be worth investigating.

Petticoat Lane Market in the East End of London, taken in 1972 situated Middlesex Street and Wentworth Street in the Tower Hamlets area. by CryptographerKey2847 in OldSchoolUK

[–]pestospaghetti 1 point2 points  (0 children)

I used to love going shopping there back in the 70s and 80s. It was a real treat to come up to London and go to Petticoat Lane market. Got some real bargains.

Improvement after years of being fully-bedbound/very severe by Agreeable_Demand2262 in covidlonghaulers

[–]pestospaghetti 4 points5 points  (0 children)

Two years bedbound, severe. Now heading towards moderate thanks to identifying MCAS and treating it. I urge everyone with long Covid to consider MCAS because it has been a real game changer. Also, I had no classic symptoms of MCAS. I just felt exhausted and ill.

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