My main symptoms from inhaling nearly anything, fragrances, smoke, etc. are mostly pressure behind the ears or whole head, headaches and brain fog. The brain fog is the most disabling symptom and what I want to treat most.

My mom is wanting me to decide if I want to go to the doctor soon. But I'm not sure it's even worth the likely severe symptoms I'll get from the trip.

If I knew I'd test positive for an MCAD then it may be worth it to possibly get disability, but since I've had 7 years of remission in my life once as a young adult I'm thinking I wouldn't have mastocytosis, but MCAS, and thus would need to have severe symptoms for it to maybe, if I'm lucky, show up on serum tryptase etc.

The moderate brain fog I have most of the time is bad enough. I don't feel like purposely making myself really sick for an unreliable test. It would likely take me several weeks or even months to regain my very limited mental function after that bad reaction from the trip. Although I'd likely get super messed up anyways even doing everything I can to avoid it and wearing my heavy duty respirator.

I'm thinking for purely a treatment interest it's pointless for me to even get tested. Whether I get a positive or negative result the treatment tried would be the same I think. So I'd rather just get some meds to try for brain fog without even bothering with the testing for now.

Or am I too pessimistic and underestimating the test's ability to diagnose MCAS? Oh and has any meds worked well for brain fog? If they make you really drowsy then that's kind of trading one brain fog for another. I really hope there is something I can take to be able to think more clearly and remember better.


Meds I've tried:

Benadryl dye free liquigels
Zantac
Claritin
Asprin
Few Decongestants

I tried Claritin years ago for my worst reaction ever (2 weeks of head pressure) and my symptoms only got worse afterwards, so it at best didn't help. The aspirin and decongestants triggered heartburn and brain fog and slight head pressure. Zantac ironically also triggered bad heartburn but also made me burp up some smell that burned my nostrils.

Benadryl is the only thing that may have helped. I think benadryl helped some but not sure because it made me drowsy a lot of times which makes it hard to judge whether it helped the brain fog. And the duration of my symptoms are unpredictable and were mostly short lasting during the time I was testing out benadryl. I never got to test it when I got severe symptoms. So I'm not sure if I was getting better completely on my own or if the benadryl helped. Although benadryl has failed to get rid of my headaches a few times when I tried it.

I have a presumed diagnosis of MCAS with no definitive positive testing. I was started on the treatment based on fitting the clinical profile

I'm on some mast cell stabilizers cromolyn and ketotifen. Sounds like that's a class you might not have tried. If the exposures are too much to travel which I totally understand as I haven't been able to since sick, if there is a local doc who would contact an expert you can get the same type of ball rolling and can maybe travel farther when you get more stable.

Don't give up.

Do you have any windows in you garage or ways to get fresh air? I rely on fresh air but live in a relatively unpolluted area. I tried going to a larger city and couldn't breathe outside. Also during hayfever season fresh air can make me worse.

Oh shoot I totally hear where you're coming from

Are you in a damp area geographically? Is mold an issue? Is it a city and polluted?

The only way I know of to get an Rx without you leaving town is to get a liaison doctor who can consult a specialist by phone to save you going while you're this unstable. There are econsults or phone options; I know the econsult one has a fee but has to come from a doc

If you find a med that helps hopefully they can give you a ton of refills so you don't have to see the doctor frequently

Which still leaves the conundrum of not being able to go and see a doctor. I too get anaphylactic if I go into hospitals or clinics but luckily am ok outside. But then I needed surgery so I had to figure something out. I offgassed a respirator style mask to wear to appointments and waited outside until doc was ready. Now that I'm stable I'm going to ask if any doc would do my follow up visit outside.  There are all kinds of masks. If honestly even look into hazmat style hoods or suits with an air tank if it came to it. I didn't do well with oxygen cylinders but they say scuba air tanks are better and can be hooked up to various masks to help get you outside when you absolutely must. None of these are easy obviously. I really struggle with the tubing the air comes through and found tygon slightly better but had to air it out and offgas

Do you have a safe car? Perhaps a kind doctor could be convinced to see you in your car or even make a house call just to get the ball rolling.

When I had to go into hospital for surgery I took high dose prednisone and was kept in isolation. This prevented any mega reactions or seemed to. Another thing to talk to someone about trying if you need to get out of the house to start your medical care.

Now that I'm post op I avoid doctors offices and hospitals like the plague because they make me ill and pray I won't have an acute event and need them as all of the medical plastics hand sanitizers perfumes have me flushed from head to toe and down the road to anaphylaxis

Have you ever tried taking a Benadryl and then attempting something you don't tolerate as a premedication?

Is your water source triggering you at all? Can you get some portable air filters? I worry about you in an unventilated space.

Hopefully you can figure something out to get you through this. I know you said you recovered before, did that happen out of nowhere or did you have to do something specific?

Don't give up!!

Brain fog is one of my worst symptoms and I have had some success on sodium cromolyn/Gastrocrom.  My mast cell specialist told me that it is one of the most effective meds for that.  I have it specially formulated with absolutely no impurities by a pharmacist who works with my specialist because I was even reacting to the supposedly pure form from a major company.  I had to adjust the dose several times, however, and it did take some time to build an effective level.  

Also, I found iron supplements (again, carefully selected to ensure no impurities) hugely helpful for my brain fog and energy level.  I was very low on iron for some time and now take 200 mg/day.

Best of luck!  

Anaphylaxing wrote on 04/09/13 at 21:48:15:


Sorry I see you already answered the question that I asked again. I forgot.

I guess I can call around or have my mom talk to some doctors in my town, but I'm not optimistic about getting anywhere. Maybe I can quickly explain my situation and ask what is the best they can do.

I don't have much experience with doctors. So I don't know the best way to go about it. Do you think an allergist would prescribe me hydroxyzine and gastrocrom if I tell them about MCADs and my situation about not being able to travel to a specialist?

I think I'll call that Gastroenterologist MCAD specialist. But last time I called several months ago he was backed up with patients for many months. He was willing to take me without a referral back then. I just hope he doesn't want to focus too much on the GI symptoms because I have that under control. It's easy to control what I ingest and just stick to a few foods, but I need help with the brain fog from things that are impossible to avoid inhaling.

This Gastroenterologist MCAD specialist is listed in my state on the Mastocytosis Society website under Medical Research Centers. So you think he'd be my best bet even though my concern is brain fog and not my GI intolerances? I just want to tell him my symptoms and get some prescriptions for hydroxyzine and gastrocrom for brain fog. I don't want to take off my mask for a pointless Gastroscopy.

I mostly just took Benadryl after a reaction to something. I wasn't thinking but I know anti-histmaines would be far more effective if taken before a reaction since they block histamine receptors but don't counteract the result of already activated histamine receptors, as far as I know. I just didn't want to take benadryl all the time because I was concerned about building up a tolerance.

I wish the real Benadryl Dye Free Liqui-Gels would hurry and come back. I just called Benadryl and they haven't discontinued it. They're updating their facility and don't have an estimated time of availability.

I didn't take any meds or supplements to help me when I made a great recovery in the past. All I did was keep my life simple and avoid triggers really well. Although one thing that may have helped is that I eat a lot of olive oil with my meals just for the taste and just months ago I learned that olive oil contains a mast cell stabilizer called Luteolin which is in Dr. Theoharides' product NeuroProtek. So maybe that helped.

So I guess order some of that benadryl online and take it before the trip to that MCAD specialist 100 miles from me and wear my heavy duty 3m 7500 respirator with 6001 filters huh.

EDIT: Actually I just remembered that a closer hospital mentions on it's website that it also has physicians familar with mastocytosis or something like that. I haven't been able to find it online again. And I'm thinking that Gastroenterologist may be really expensive though I'll call and ask. I don't have health insurance.

Yeah I don't tolerate the walgreens brand. I tried it maybe 2 months ago and it gave me heartburn. It has the same exact active and inactive ingredients listed as Benadryl but it's different because I always bust open the capsule and swallow the liquid with a glass of water and the Benadryl brand has a more mediciny taste to it, while the Walgreens brand has a nasty old taste to it. Maybe if I would have swallowed the gelatin capsule whole it would have been fine.

Fortunately Benadryl has apparently resumed manufacture of their version because the online stores finally have it back in stock. So I'm going to order some more right now.

Hi Daffodil.

I ordered it from: http://www.walgreens.com/store/c/benadryl-dye-free-allergy/ID=prod5632-product?e...