Joan, I don't know the science behind it, but that allergist is smoking some good stuff. If I've had a major episode like Lisa just did, I'm much more easily set off, (Lisas bucket theory) for a few days and totally wiped. Usually cant eat, just will throw anything up, it's as if my gastro system shut down, I call it my near death recovery again non scientific. Of course my love of allergists is not too great considering I've sat before them hearing something is impossible then to hear, wow I've never seen that before.......I can't say just allergists that's been all sorts of docs! Know what you mean by the burnt nasal passages too, mine is esophagus,  I don't nasal rinse though, I literally feel blood poisoned.  So sorry you are feeling terrible lately too!

Joan,

According to my dermatologist - and she's a masto specialist and the highest authority we have here in Brazil - she said it takes 3 days, but this is really just splitting hairs, in order for the process of the mast cells to replenish themselves.  This is where the Krebs Cycle comes in which I explained to Ruth, I believe.  http://www.wisegeek.com/what-is-the-krebs-cycle.htm

Because your mast cells are directly involved in this cycle for producing energy, the fact that they are depleted means you have less energy to use for your daily activities of producing energy for normal functions.  Yet, because those cells are depleted, there is also less resources available.  Yet also, it takes energy to produce and restore those chemicals to the mast cells so all of this is compromised.   If you think about it, although your mast cells themselves may have restored themselves be it within 48 hours or be it withing 36 hours it's really insignificant because until your body is back up and working properly, you're going to be with this lower level of energy production.  

If you can understand this Krebs Cycle, which I feel is complicated and I'm still struggling to get it into hand, it makes the bucket theory make full sense.  Why, because if you look at the bucket in connection with the cycle of triggering you can understand how it is that we can get so exhausted and drained and why we are also then on the edge constantly and why we end up vicious cycle of triggering - the way it feels itself.  

You see, there's no beginning nor end to the cycle, it's ongoing, non=stop and constant!!!

In my case I have chronic histamine release.  We know this because my urine methyl histamines were taken not in a crisis but during my normal daily routines and with this it came out elevated.  This means that my mast cells are CONTINUALLY putting out histamines and being triggered.  It's chronic and CONSTANT.  This means my body is constantly spending energy to replace what has been spent within my mast cells.  This includes whatever other mediators are also being spent along with the histamines.  All of that mediator dumping also has it's affect upon my body for not only is my body using up energy to replace what is constantly being spent, but it's also having to respond to the damage and chaos that is being caused by all of that mess - the overflowing bucket.  This takes a lot of work, constantly cleaning up the flood.   Imagine if you had a hose up in your attic and it was on full power and it was causing the entire attic to have water everywhere.  you'd find the water coming down the walls all over the house and the running around of emptying one bucket after another to keep it from overflowing everywhere  and yet, what about those places where it won't drip directly into the bucket, then you've got rags that you're constantly wringing out as well!  And then think about those places where you can't get to quickly enough and it begins spreading the water around!!  It's a TON of work - HARD WORK!!   All of this activity takes a great deal of energy and the problem is, that more tired you get, the more mess you've got cause you can't keep up with the constant flow!   Now, just consider adding not just one more hose, but a FIRE HOSE to the one in the upstairs.  Anaphylaxis is like that!  It's like that Tsunami which hit Japan in that it's coming and there's virtually no way to prepare for it.  You can try to batten the hatched and ride it out and hope the damage isn't too big.  I'd compare it to the situation they've got in Holland in that they've built flood gates.  Epinephrine is like a flood gait against the wall of water which has been let loose and it helps to stop the inundation.  The problem is, the water is high and the inundation is there regardless.  Epinephrine may take away the present problem, but it hasn't resolved the storm.  It's only put it under control.  Your body still must work hard to clean it all up!!!  This takes a lot of resting and keeping a really low profile and doing all you can to allow your body to catch up.  

So, the bucket theory is great to explain that of the daily degranulation grind, but when you talk about these bigger reactions, Joan, the whole situation is really much more complicated and overwhelming and this has to do with the Krebs cycle and how our bodies are needing to restore their balance because the kind of wreck and ruin that an attack does, like what happened with me, is that it's caused a great deal of damage throughout the body which takes days to recuperate and if you've not fully given your body that rest it's so badly needing, then you end up prolonging the healing and recoverly.

An example of this is what happened to me this weekend.  I was pretty much back to normal, but I'm still working with recovery from my surgery last June.  However, I had to work Wednesday and Thursday.  I took naps those afternoons and was okay.  I was looking forward to my day off on Friday, but I couldn't take it afterall and I had to work it.  Friday afternoon I was exhausted!  Saturday I was at home and totally worthless as to doing any kind of work!  Yet I had to step out in the afternoon and we had some guests over in the evening even though I didn't have to do a thing.  My blood pressure was already on the low side and I felt so exhausted.  Sunday I hadn't the strength to go to church and my pressure was 80/50 and my bpm was 56 when I was resting and it was like having to push a huge load of dirt uphill the entire time!!!   I'm at work now, but I'm tired and on the edge and although I'm going to take a nap this afternoon, my pressure will probably bottom out!!

This is what happens when we don't or can't allow our bodies to stop and replace what is being drained.  Our bodies feel it to the extreme cause we are constantly demanding energy that we don't have.  

So, this is why Joan.  This is how it works.

As to the puffiness - I believe that this is from the interstitial fluids that are leaking.  There's a name for this and I'm afraid I'm just not remembering.  I think it's called third spacing.  These fluids leak out and spread out all through the body.  It's kind of like an angioedema, but it's really just plain edema and this edema is hard on the body to try to get rid of but also to have dumped in the first place.  It's hard on the body and makes it work that much harder.   But I believe this explains it.  What exactly it indicates in relation to masto, I'm not quite sure.

Joan, as to my having that reaction, it was totally masto and not one bit of it IgE.  This is masto and why it was that particular perfume, I don't know but when I googled this particular brand, I saw that they use all kinds of trash with their perfumes.  Google it Joanie, you'll see what they listed with Wikipedia!!   Awful stuff!!  Comme das garçons.  Weird and toxic I'd say!!!

I too hope I never have another one like that!!  it scared me!!!  Thanks for the tips, I'll have to remember that about the baking soda!!

Hugs and I hope it helps make a bit of sense!

Lisa

Hi Lisa ,

Thanks , I ahve been following this and it makes complete sense and it will help me explain to family and medics about my recovery phase You expalin things very clearly for me

I am glad you are feeling better
Josie

Thanks, Lisa!  You are a very good teacher!  

I know what it's like to have 80/50 blood pressure.  Before I was  diagnosed, I couldn't figure out why it was so hard to get out of bed in the morning and why I'd feel so shaky.  When I got a BP cuff, it became painfully obvious, because that was my BP every morning!  I'd drink a couple of cups of hot water with a little ginger in it, and then I'd get more energy (BP would go up as I moved around.)  

The baking soda is optional.  It's added to most commercial nasal saline solutions as a buffer, to make it sting less and less harsh on the nasal passages.  I do recommend, if you're mixing the solution yourself, to use Kosher salt or other salt without iodine added.  I prefer to use the pre-mixed packets (less messy), but home made is just as good.

As for the "doughboy" effect, I agree that it's edema from leaking fluids, but I think it also is related to the adrenals being exhausted, and that's also another contributor to the fatigue.  I find that if I have a bad attack and take prednisolone for a few days that clears the edema quickly, and the fatigue leaves, as well.  When I get into a too hot environment, I start to puff up, flush, etc.  I know it's leakage causing it.  It's all so intertwined.

The puffiness I get is generalized.  There's no wheezing or rash.  In fact, I tend to look pale and just "puffy."  I notice it around my eyes and in my face first, but my rings also get tight, pants feel tighter,  get brain fog, etc.  If I press a finger on my cheek, an impression stays there for a few seconds.  Sometimes the puffiness follows an episode, but sometimes it's an "early warning" sign, and I tighten up my self-care and increase meds.  It's like a red flag to slow down.

Here are the rare published possible side effects of gastrocrom:

"Other Adverse Events

Additional adverse events have been reported during studies in other clinical conditions and from worldwide postmarketing experience. In most cases the available information is incomplete and attribution to the drug cannot be determined. The majority of these reports involve the gastrointestinal system and include: diarrhea, nausea, abdominal pain, constipation, dyspepsia, flatulence, glossitis, stomatitis, vomiting, dysphagia, esophagospasm.

Other less commonly reported events (the majority representing only a single report) include the following:

   * Skin: pruritus, rash, urticaria/angioedema, erythema/ burning, photosensitivity
   * Musculoskeletal: arthralgia, myalgia, stiffness/weakness of legs
   * Neurologic: headache, dizziness, hypoesthesia, paresthesia, migraine, convulsions, flushing
   * Psychiatric: psychosis, anxiety, depression, hallucinations, behavior change, insomnia, nervousness
   * Heart Rate: tachycardia, premature ventricular contractions (PVCs), palpitations
   * Respiratory: pharyngitis, dyspnea
   * Miscellaneous: fatigue, edema, unpleasant taste, chest pain, postprandial lightheadedness and lethargy, dysuria, urinary frequency, purpura, hepatic function test abnormal, polycythemia, neutropenia, pancytopenia, tinnitus, lupus erythematosus (LE) syndrome"

Although rare, it can cause edema.  I myself have tinnitus that I believe was triggered by the gastrocrom.  I guess it's like all meds.  Is the cure better or worse than the disease?