Middle of Night Episodes and Questions about Other Symptoms

Edited , 5 users are following.

Hi,

I am new to this board and have been diagnosed with asthma and allergies. My tryptase level was normal as were other mast cell markers in a urine test, but the allergist is going to treat me as if I have a mast cell disorder based on my symptoms. Nothing showed up on the food allergy skin test, although I am highly allergic to grasses and other inhalants. Here are my questions:

I've had a chronic cough for years, and occasionally my throat and nose will close up completely so I cannot breathe at all during a coughing spell. Eventually it will release and I am exhausted for the day. There are no hives and this does not seem to happen in response to any food or inhalant, just triggered by the random cough. Sometimes it will occur when I've been asleep for a few hours out of nowhere. The doctor is calling this anaphylaxis and has given a prescription for an epi pen and a rescue inhaler with directions to go to ER after an episode. Since I can't possibly inhale during these episodes, I won't be able to use the inhaler. There is no point going to ER because once it's over, it's over. Does this sound like anaphlaxis to those of you with more experience? I am wondering if the epi pen is the answer.

Next, I have terrible flushing episodes at random times during the day, and they are worse at night. I always have one about half an hour after falling asleep, where I get very hot, anxious, have elevated heart rate and my hands turn bright red. My blood pressure goes down and I feel faint. A cardiologist recently diagnosed me with dysautonomia. Sometimes I sweat a lot during an episode, and last night I nearly fainted when I got up to use the bathroom. I had to lie on the floor for a while before I could get up. This is in spite of using medications.

I'm now using an inhaler for the asthma which has helped the cough a lot and increased my lung capacity significantly. I am also taking Zyzal, Zantac, doxepin and quercetin but the night time episodes have not diminished at all. They seem to happen at the same time every night beginning around 10 p.m. I don't get hives or itching with these attacks, but I also have neuropathy and it is highly activated by an episode. I am also woken up with a mild episode when it's time to get up for the day and that irritates the nerves terribly. Does this sound like a mast cell problem or something else? The trigger seems to be changing sleep states rather than an allergen.

I am happy to finally have doctors taking me seriously but am overwhelmed and confused by these episodes and not sure we have hit the target yet. I would appreciate any observations. Thanks

G

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4 Replies

  • Posted

    I would suggest trying an effective active carbon filter in your bedroom,many allergies are considerable increased by fine particles in the air.

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  • Posted

    Hello! The one with the breathing does not sound like anaphylaxis, which is characterized by symptoms in more than one body system (ei breathing problems + itching) but if it is fixed by an epipen then it very well could be an allergic reaction. The one where you just feel hot and get red could be caused by something called idiopathic urticaria which is a type of mast cell disease that happens in the skin. Brigham and womens (the leading hospital in mast cell disorder research) recently published a paper about a better diagnosis for mast cell which is done through a gastrointestinal biopsy.

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  • Posted

    did you ever get a definitive diagnosis? also, I was wondering what your neuropathy is like at night? I am also being treated for MCAS without elevated levels. (The prostoglandin D came back unreadable) i have very bad activation around 10 pm every night also and feel like im dying. My MCAS doc explained that mast cells activate at night, which explains it. Can you give me an example of the neuropathy?

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  • Posted

    Thanks to those who answered, I did not see until now. The nerve problem started in one foot and spread up the leg , then eventually to my trunk and now both arms and hands as well as jaw. It's always a prickly feeling with some stabbing and shooting sensations.

    When I have an "attack," just like you do at night, I suddenly get hot and flushed. The heat spreads up my spine and all the places with neuropathy are lit up like a Christmas tree on fire--prickly, hot and with a strong sense of anxiety or doom.

    I've been diagnosed with dysautnomia, which is a problem with the nerves between the brain and the heart, as well as with a connective tissue disorder. I think the nerve pain is because my spine is not holding well any more, and the flushing etc. is mast cell, bad combination. And unfortunately I also have Lyme, which could be what ties it all together.

    I hope you don't have anything like this, but I do suspect there is a tie somehow between the flushing and mast cell. Mast cells line the nerves and also are in the spine. My blood pressure drops when I flush and my heartrate goes up. Then i start sweating like crazy and feel faint.

    I have gotten a little better by exercising daily and using a standing desk at work. Drinking two big glasses of water really fast can help. I wish you all the best figuring out your situation and finding a remedy. Thanks again for asking.

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