Desatting during attacks

[floating_]

So I got quite ill. Went down to 87% in the ambulance, struggled to get my sats up even with oxygen driven neb. Got discharged anyway. Is this normal? Been in and out of A&E multiple times this week alone. Admitted twice since the start of the year, etc. I'm really struggling even now. My sats still keep going low, so use a neb and it helps a little but they drop again. Feel like I'm wasting A&E resources. Dunno what to do. I'm sure I should've been admitted but because I was fine post nebs in the hospital with my peak flow and no longer wheezing, they disregarded the earlier attack.

[Poobah]

Looking back at your earlier posts I see that you're waiting to see an ENT specialist in order to check for vocal chords dysfunction etc. If this is diagnosed then you'll be asked to undertake breathing exercises designed to relax the vocal chords. Examples of these are available on YouTube. Any breathing dysfunction can cause breathlessness and poor gas exchange in the lungs and may affect oxygen levels (not always).

You also stated you may have mast cell issues and low oxygen levels can cause mast cell problems. It's a bit of a vicious cycle as the mast cells may be releasing more histamines and so you suffer from inflammation and you will then experience asthma symptoms (you may even have acne like breakouts, flushing, acid reflux, low blood pressure, gastric problems, headaches, fatigue, brain fog). Your consultant will be able to establish the nature of the mast cell disease and how it fits along side your asthma phenotype.

I've taken part in research as a mast cell sufferer and after treatment (Azithromycin) I was much improved (Azithromycin acts like an anti-inflammatory and research is ongoing to understand its affect on mast cells).

But I've had to modify my diet and avoid all processed foods and alcohol, and by default it's low gluten as I don't have carbs apart from those in vegetables. I also avoid omega 6 foods and oils but that's because of my AERD. The inflammation on my face has gone and my breathing is much improved. The consultant did explain the mast cell and IgE mechanisms to me but I'm afraid it went over my head so I can't explain it here.

I have low eosinophils but raised IgE and aspirin exacerbated respiratory disease (AERD).

[floating_ in reply to Poobah]

Yeah, I'm already doing breathing exercises, I also will be getting an acapella device for mucus clearance too. When my sats are like mid-low 90s it helps to do the breathing exercises (sometimes). But when it was like below 90 things just weren't improving without high flow oxygen and a neb! It was awful.

Interesting about low O2 causing mast cell degranulation, I didn't know that, but it might explain why I keep having repeated bad attacks recently? I'm not sure. Where did you find out that low sats cause mast cell issues?? I'll have to ask about Azithromycin. Clarithromycin doesn't seem to be working for my current infection for whatever reason.

What is your current treatment set up for mast cell disease if you don't mind me asking? I'm on quite a lot already, including Xolair. So my MCAS is better than what it was, but evidently respiratory symptoms are still triggering off. 🙄

My diet is pretty limited due to the MCAS and Gastroparesis. I'm not sure if omega 6 triggers me, but it's something I'll look into with my dietician. I have to avoid aspirin anyway due to my MCAS, also can't have ibuprofen either.

[Poobah in reply to floating_]

I avoid omega 6 because of my aspirin/ibuprofen sensitivity and I came across this info on the Samters Society website, which is linked to Boston's Brigham Women's Hospital in the States. As far as I know, they're the only centre undertaking research into respiratory disease linked specifically to aspirin sensitivity. Here in the UK we're still using the low salicylate diet, but I tolerate many foods on the list very well, however over the tears I worked out other non-salicylate foods really made me ill. Turns out that they're all linked by omega 6 which can cause huge amounts of inflammation in me and fellow sufferers. I also avoid carbs apart from those in vegetables (and therefore gluten) and alcohol.

Apart from 2 courses of Azithromycin, my ongoing treatment is Montelukast as my diet appears to be working very well in keeping things in check, but I didn't have the other gastrointestinal symptoms etc.

If you Google low oxygen or hypoxia and mast cell, or MCAS, there are a range of articles and research publications that discuss the link between hypoxia and mast cell problems. This paper, page 28, discusses dietary treatment, that is low histamine foods, low omega 6 foods, low gluten and no alcohol. ncbi.nlm.nih.gov/pmc/articl...

Interesting that the dietary advice for AERd is pretty similar to MCAS.

[floating_ in reply to Poobah]

Interesting. So do you just not get omega 6 at all?

Ahh, diet alone wasn't enough for me, although I'm obviously still avoidant of known problematic foods!

Tbh even some "low histamine" foods trigger me lol, there's no real consensus atm it seems. I avoid my own known MCAS triggers though. Avoid gluten and I can't drink alcohol (even alcohol hand gels as an example trigger respiratory symptoms, not the same type of alcohol of course, but still. I'm very sensitive!).

[Poobah in reply to floating_]

I get a very small amount of omega 6 in my diet, as it is an essential fatty acid, but have to counter that with plenty of omega 3 (fish oil supplements). I use coconut oil and butter (grass fed cows) for cooking and avoid all vegetable oils, from olive to corn and sunflower. Soya is very high in omega 6 and it's in so many processed foods and is already in the food chain as it's in animal feed. Chickpeas, sweet potato and avocado are also on my avoid list. I eat a moderate amount of cheese and live yoghurt, omega 3 eggs but no milk. By avoiding processed foods and baked goods I'm also avoiding preservatives and colourings. I have complicated things by doing intermittent fasting (2 meals a day) and keto since May, but that's helped me no end and the benefits outweigh any deprivation.

I'm clearly not as affected as you, and I can only sympathise, as your condition is quite aggressive. I'm sure you already know, but there's a Mast Cell Action support group on Facebook. I joined the AERD support group on Facebook and that's been very helpful as everyone pools their experience and treatment info (it's very difficult to find a specialist who knows much about the condition). Again I realise how fortunate I am as some people have really aggressive AERD and are treated with systemic steroids or biologics.

[floating_]

Turns out I have pneumonia in both lungs and I'll need a longer course of antibiotics to hopefully kick it. What's the difference between a chest infection and pneumonia anyway?

[Poobah in reply to floating_]

Blooming heck, you are going through it. I hope the antibiotics sort the pneumonia out and that helps you feel better than you have done recently.

[floating_ in reply to Poobah]

Yeah. 😅 It explains why I keep having exacerbations, asked my doctor about what you said re: low sats and MCAS and he said that it is almost certainly contributing to the picture at the moment. I had an urgent same day appointment with my local hospitals rapid access clinic. Grateful.

I'm due to see him again in about 8 weeks and hopefully the pneumonia will be gone by then!