After receiving some great advice about a week ago I incorporated some over the counter medications into my regiment.  I currently take the below meds:

Xyzal - 5mg
Singulair - 10mg
Zyrtec - 10mg
Zantac - 300mg x twice daily

I added the Zyrtec and Zantac about a week ago and they have worked wonders (Thank you Lisa).  With the addition of these new meds I noticed my symptoms were getting better / calming down; over the weekend I also noticed that my skin wasn't reacting the same way as it had before in regard to the skin writing so I thought I would try something.  I started taking all of my meds twice a day (am & pm) like with the zantac.

Today is the second day in a row that I have not been able to write on my skin -- YAY!!!  I have had this symptom since all of this started in August!  I am so thrilled, my children may be disappointed, they had nicknamed me "Human Etch-A-Sketch"; but I think they will survive in the long run ....

There's a second side to this though and I may need some advice on it.  I woke up this morning and my nose was full of dry crud; I had to blow my nose VERY hard to get the junk to come out.  When I did this it started bleeding and I mean it was a heavy steady stream of blood.  I took tissue and laid down with my head back and after about 15 - 20 minutes the bleeding was not as heavy, but it last about an hour in total.  I am assuming the amount of antihistimines coupled with the cold weather dried me out?

Starting today I'm going to go back to my old regiment and take my Xyzal, Singulair, and Zyrtec only at night; but if my skin writing comes back as a result is there something else I can do to eliminate that symptom?

You're much better off not being the human etch-a-sketch!    A reaction on your skin can easily lead to other symptoms... and a worsening of your disorder over time.

A few thoughts about the dryness... that's the reason I reduced my H1s for the winter.  I just started increasing them again (last night, in fact), because I'm starting to get some breakthrough symptoms like dizziness.  Maybe things will settle down once the turmeric gets out of my system (bad experiment!), but I'm not too hopeful since my first big attack was in February 2009.  February seems to be a bad month for me.  Anyway... it does take a little experimenting to see what makes you most comfortable.  Have you ever tried using a humidifier in your bedroom?  I also find that if I eat something hot in the morning (oatmeal is perfect) it gets my nose running and then it's a lot easier to blow  Gross, but true.

Heather

@ more suggestions. Do NOT blow your nose that hard, lol.. do it gently. The other suggestions is to buy some Nasalcrom nose spray at walmart 14$ a bottle. works well for me, less dry.
Hugs,
Ramona

Hi Ruth,

Degranulation causes a cascade of things to be released... histamine, leukotrienes, VEGF, and most important for this discussion... cytokines.  Cytokines (also known as interkeukins) go out into your blood stream and tell other blood cells what to do.  For example, if you get a cut you need the cells in that area to recruit others in order to form a clot and start the healing process.  Very important!  With us, the problem is that we have tons of cytokines being released all the time.  For some people, this doesn't seem to be a major problem.  For others, it IS a problem.  A reaction in your skin can spread to other parts of your body.

It the short-term, it might not be a problem if your son does his "etch-a-sketch" thing  The reaction might not go beyond his skin.  (I would urge him to stop though if it brings on other symptoms like headaches, nausea, dizziness, etc...).  In the long-run, by releasing all of those cytokines he might be recruiting more mast cells to his skin... slowly making his mast cell disorder worse.  It depends on what kind he has.  Until you know for sure if it's MCAD or a neoplastic mast cell disorder (SM/UP), I don't think it's a great idea to be degranulating more than necessary.  Make sense?

Heather

Hi Ruth,

I totally understand your frustration.  Most doctors think about symptoms in a short-term, compartmentalized fashion... and they don't really know anything about mast cells, so they're not thinking about cytokines (or heparin, or VEGF... things that won't kill you in the short-term).  The mindset of most doctors is, "As long as it doesn't kill you, it's not a big deal."  Well... we as patients have a different perspective... 1) What doesn't kill me could still make my life hell, and 2) What else can I do besides taking medication to help myself feel better?  These are simply not the kinds of concerns that doctors have.  Western medicine is GREAT for treating crises... it's TERRIBLE at preventing them.  And really... why is a doctor going to spend a lot of time talking about "lifestyle changes" with a patient who may or may not change anything?  (I imagine this is one of the most frustrating parts of being a doctor who works with patients that have chronic illnesses affected by diet like diabetes or celiac disease).

Anyway... now you know that this "no big deal" symptom might be a problem in the long run.  It's like eating bacon and eggs every day until suddenly, whoops... I have high cholesterol.  It's not easy to make changes that don't affect you in the short-term (especially as a teenager!), but hopefully your son will understand and see that what he's doing is a not a great idea... even if it kind of fun

Heather

There is a "kit" called SinusRinse that can be bought at Walgreens and other pharmacies/discount stores.  It comes with packets of saline (with buffer) to mix in the squeeze bottle with warm water.  I find it's  really helpful, especially since the antihistamines combined with the dryness in the air are so harsh this time of year.  The allergist told me that regular saline rinses help to normalize the mucosa in the nasal passages and that normalizes the secretions.  Hope that helps.

Xyzal is a newer version of Zyrtec.  A 5 mg. tab of Xyzal is equivalent to a 10 mg. tab of Zyrtec.  I believe it has fewer side effects and works better than Zyrtec, but some people can't tell the difference.  Zyrtec's patent ran out, so the company put out an "improved" version that is changed enough to warrant a new patent.  You can try them both and see what you think.

Thanks Lisa, we're working on it.  Sometimes I think it's in my head, especially when docotrs treat you like that's the case. then I read more about it, and think more about his patterns and just my gut instincts bout his health and I'm determined to keep looking for answers.  We live in Singapore at the moment, so tracking down the specialists is not simple, Ramona poointed me in the direction of a couple, then I spoke again to my family doctor and had a really encouraging response from her.  She has identified a professor of dermatology, and we will finally get to see him tomorrow, but I'm not sure how much expereience he really has with this.   So I'm excited to get to see him, but quite prepared to need to keep looknig for another specialist.  I ama waiting a reply from a contact given to me by a board member from tmsforacure. She has a specialist here, so if I hear back from her that will give me another option if I need it. I am hoping this dermatologist will work out, but after all I've read lately if he doesn't think this is worth looking into, I won't see that as a negative diagnosis, just need to keep looking for the geeky doctor who gets it.  In the meantime I think we have learnt enough that I can go back to my family doctor and at least look into trying out some medication regimes and see what that does,   she is quite supportive and now thinking along the mastocytosis line, so I think I can work with her in the short term while I find the right specialist.   Even if that means waiting until july when we are back in Australia where I have the recommendations there to follow up. I would just like to pursue local options for now if I can. I will let you know how we get on tomorrow, thanks for the encouragement.

Ruth

Jaxx:
When I was having sinus trouble. I tried regular salt and watered it down but was still to strong because of my skin sensitivity, but had great luck doing it with epsom salt. A lot cheaper than kit.
Mike V