MCAS and POTSMama
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Busy working Mom of 3 who needs to get well!
Posts: 21
Colorado
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Hi Deborah, Add me to the hair loss group, sadly. I just came across this thread and I don't know if it's a relief to know there are so many of us, or a worry that it won't be fixable. Since I had my first anaphylaxis 8-9 months ago and subsequently was diagnosed with MCAS (high N-Methylhistamine, high TNF-a, but normal tryptase), I have slowly but surely watched my hair change in texture and thin. My hair was previously my crowning glory and favorite feature (shiny, wavy red-brown long hair) and I had already noticed significant drying with perimenopause, BUT nothing unmanageable with a little conditioning until this. Now my hair has steadily thinned very, very noticeably (my husband recently commented on it, which totally crushed me), has a texture like straw, is brittle, breaks easily, is very dull and lost all its shine, and the amount of hair in my comb, brush, shower drain is insane... as if I am a chemotherapy patient, I can tug on the bottom of my hair and a wad falls out. Puts me in tears daily, I admit.
I know the hair thing is just vanity, but I feel like this illness has taken so much else away from me already, that this is the last indignity ... I've already lost a lot of my energy level/vitality, my confidence to try some new things or travel to new places for fear of running into perfumes or scents that will fell me, I no longer can have the joy of eating or of a good glass of wine, and I don't feel well enough some days to do all the things I want to do with my kids. But after being so debilitated and practically housebound at first, I was finally able to get to a stable enough point on meds where my symptoms are enough under control that I am back to work, can drive my kids to places they need to go, keep the house clean, etc, and I'd accepted my limitations in some of these other areas... then this hit - - and I feel very depressed about it. At this rate, I won't have any hair left in a couple more months. I told my husband we better go get another family pic taken before I'm bald, as I won't take pictures after that...
In my case, I don't know if it's the illness, the meds, the stress, hormones (I had mine checked shortly before the anaphylaxis and I was low on progesterone and testosterone) or the diet. I was on the meds for about 6 months before the hair problem started, and my illness got more under control with the meds even before the hair problem (although I do note I still break out in bumps on my scalp at times when I'm having a low-level anaphylaxic/anaphylactoid (?) reaction). And I feel much less stressed EXCEPT for the hair thing, which is stressing me mightily right now I admit. I read online somewhere that Singulair might be an issue too (hair loss is not listed as a side effect, but I came across a forum where people said that it was a factor for them, and that their hair recovered when they got off of it, so I may try to drop it and see what happens, but I get wheezy without it sometimes). I take 2 Zantac daily, 3-4 hydroxyzine, Benadryl as needed, 1 Singulair and 1 Allegra daily right now. I have tried every conditioner/hot oil treatment, blowdrying less, etc., to no avail. So I think it's either the illness itself or my limited diet as most likely culprits, since I am clearly not eating nutritiously. I do take a multivitamin though (2 Solaray children's chewables that are dye-free), and I take extra D-vitamin (I had my D and B vit levels checked recently, and I was fine on both, after having previously been very low on D).
Anyone else have any success with any treatment? Deborah, are you doing any better on the biotin and multivit? I bought Neuroprotek from Dr. Theo's company and it is sitting on my counter, but I've been a little afraid to try it since I'm still so reactive to every food I try. Has anyone ever had a bad reaction to it? I used to take Omega 3 fish oil, but I'm afraid of trying that again too. Thanks for listening, Carol
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