Mast cell activation

Hi everyone.I went to sleep lastnight and was awaken with a severe cough trying to catch my breath.It was like I was choking Or strangled and grasping for air.I was on my back and my body was so stiff from head to toe.After I finally caught my breath I couldn’t go back to sleep .Like something was squeezing my body tight.My neck and shoulders are still a little stiff and I feel a little tightness around my temples.When it was happening I got so hot on the inside And sweated some.I have had this happen before but not a lot.I was reading through some of the post about MCAS.my doctor did say she expected it but did not explain it to me.I tested positive for Lyme bartonella,ehriclia,and she said she’s suspicious of babesia.Does anyone know if the Lyme and co could be causing this or could it be MCAS.i have been on abx for 11 months little change and started disulfiram in Jan.i feel like a prisoner in my body.Thanks

thanks for replying .i don’t know what to think anymore.Before Lyme I can recall not many episodes of waking coughing trying to catch my breath.I thought it was my sinuses draining down my throat.The reason I suspected the Lyme was because of the stiff body from head to toe and feeling hot.That part did not occur in the past.I certainly don’t want to add a diagnosis of sleep apnea on top of Lyme .I have to make my self get up and do things to keep my sanity and try not to focus on this but it’s vey hard and since the pandemic it has gotten bad.i have to learn to take one day at a time and out the future.quote="saraeli"]That does not sound like a symptom of MCAS. Sounds more like sleep apnea. My (healthy) partner has episodes like that while sleeping on his back, particularly when overtired or stressed.

I know this stuff is freaky. I hope that you are able to tolerate the disulfiram and find some improvement!

Thanks for replying girlie.I do believe it’s from the infections.i believe the most important thing when dealing with this disease is protecting your mental health.At least that’s what I am figuring out about myself.

Girlie said...
It could be from the infections.
I had horrible symptoms during the night - wouid wake up a few times in the night/early morning in a panic, sweating, gasping for air.

I did do a sleep study and I had moderate sleep apnea... which I didn’t have any symptoms prior to lyme.

This has resolved with treatment.

I am thinking about doing another sleep study....

It won’t hurt for you to do a home sleep study to check if you’ve got sleep apnea.

I will wake up choking too. This has happened sporadically over last 6 years. I will have a clear sticky mucus which must be like a post nasal drip? It’s very scary to wake up gasping and coughing. I had gotten a respiratory virus in the fall and i was choking even more - once while driving.

I do recall being hot but not having a stiff body. I thought the hot was from being panicked I was going to choke.

I am somewhat treating mcas - mine mostly manifests as chemical sensitivities.

My husband is like that now.3 days ago I was really bad I couldn’t stop talking about it and my husband got quiet and seemed angry as if it’s my fault.Oh what I would give to not be in this situation.Anyways,his attitude made me pull myself together and say screw it I will get through this because I have a 7 year old son depending on me.I was doing pretty good until the quarantine and I spiraled downward and feared for my mentality.i have somewhat pulled myself together now and is just focusing on taking my meds and believing it’s going to work and I am healed.Thank you so much for taking the time to give back.

Girlie said...
My mental health downslided big time with these infections. My husband was perplexed...confused...and even impatient at first.
Over time he realized it wasn't anything I could control.

Treatment and time resolved it. The anxiety was worse than the depression in my case.

Hang in there - it will get better with treatment plus time.

Hi.I don’t have a Facebook account but thanks for letting me know this.Hopefully the disulfiram work and all of this will be a thing in the pass.Thank you for giving your time to reply.

orbitingaround said...
Someone on the Disulfiram Facebook group posted (months ago) that Babesia causes the waking up choking/sleep apnea symptoms. Maybe do a search?

Any chance it could be COVID?

I did have spells of waking up gasping for air feeling like I wasn’t breathing with fast, pounding heart beat. Mine happened during a time when I was exposed to mold. I probably had sleep apnea, too, but it was either caused by or exacerbated by mold exposure. Had severe stuffy nose and couldn’t breathe through my nose either and would wake up drowning in mucus.

Do you get mucus with sleep apnea?