To be honest, I don't know the answer to your question. I'm interested in the answer too. I would get the same reactions you do - struggling in the heat with extreme fatigue and/or presyncope (at least my neuro called it like that) and with having moments of being "turned off" - like that someone hit the on-off switch while you weren't looking. I've once fallen asleep in a middle of exam, right in front of professor. I've waken up soon, but didn't really know what happened. That was a short period of being "out", but it can take up to four hours and I'm very tired and confused after that. I can't draw the line between having syncope or "sleeping"..

Hi Tina,

  What a scary ordeal you've been through!  Looking back at your posts, I don't see much about you before now.  Are you on any daily meds to keep your symptoms down?  What do you take?  It sounds as though you respond to antihistamines, but that you might be on too low of a dose.  You're too close to anaphylaxis on a daily basis, and I'm sure the stress of having a sick child is contributing.

  Have you looked at the Emergency Room Protocols list of meds that are better tolerated for mast cell patients?  It's posted on this forum and on the tmsforacure.org website.  Personally, I can't take percocet without pre-medicating with an antihistamine.  A lot of people here tolerate Tramadol well for pain.

  Very happy you now have adult epi for yourself.  You'll still need to have more than one, in case they only prescribed a single.  There should be instructions for how close together you can give them to yourself.

  Do you think there were fillers or additives in the steroids that caused the problem or the steroid itself?  Definitely ask the allergist whether it was the steroid that could have caused the anaphylaxis.

  Let us know how you're doing!

Tina, hijacking threads is something that always happens, don't worry about it.   Yet, your response to Kim is important and shows excatly what needs to be done in just such a case.  

The reason why the epi didn't work long is because it's not a long lasting medication and sometimes it's necessary to use an infusion of epinefrine and not the bolus shot.  Doctors don't always know this.  

I suggest, Tina, that you start a new thread and talk about this reaction of yours for it's important and will allow us to talk about it seperate from Kim's situation here.  They are both related for Kim's situation was anaphylaxis as much as yours was.  They only manifest themselves differently.  This is why identifying them is so challenging.

Lisa

Kim

What you went through is indeed anaphylaxis, only it's not an acute reaction which is why it doesn't seem to show itself so clearly.

Like Tina, if you had used an epi-pen it would haved turned your situation right around.  

According to Dr. Escribano, the epi is used when the blood pressure changes.  That is what he has indicated on his Brazilian protocols.  I've translated those protocols into English and so those instructions are on there.  Here is the link to them. http://inicia.es/de/luisbau/Doc/PROTOCOLOS_INGLES.pdf


Now, I also go through this very sitaution of yours and can get ice cold as well.  Only my heart doesn't do what yours does.  I go through what is called relative bradycardia.  Often, when my BP drops, so does my heartrate.  The lower the BP goes, the lower my HR goes too and they keep one another company.   This is called Cardiac Anaphylaxis.  This has driven my doctors absolutely NUTS because they didn't know that this is what I was doing.

Now that I've sent them this document, they're understanding the bradycardia better and my cardiologist is seeing that the only way to help keep this from happening so much is to keep those pesky mast cells CALM AND STABLE!!

So, what do you do?  

Well, when I go through slower degranulation I go into shock with hypotension.   I don't have an  epi and my doctors are stuck right in the middle as to whether I should use it due to my getting hypertensive in crisis.  The big cardiologist is not happy in our using epinefrine and has said that FOR ME this should be used only with medical procedures or in SEVERE reactions.  But this is ME.   This is not always the case for other patients and your cardiologist should be brought in.  

So, what do I do?   TAKE EXTRA ANTIHISTAMINES!! both H1 AND H2 is what I do and if this doesn't help, then I crawl under the covers, even when it's a 100 degrees out, and CRASH OUT for a couple of hours.  This is usually what my body is craving - to call all physical activity to a full halt so that it can stop the degranulating.   Usually, when I wake up, may pressure is back on the rise.   When it's a bad case, then I go the remainder of the day wiped out and even the next day, but the worst is usually over.

Now, the syncope this is definitely a SEVERE cardiovascular reaction.  I've done my research and talked with several high authorities on this and we've been able to conclude that this is what it is.  Those of us who go through this, be it 15 minutes or 8 hours long, this is INTENSE VASOPLEGIA.   It is indeed a serious reaction and you need epinephrine but you also NEED A DOCTOR!  A bad reaction can be deadly, I'm afraid.  There is one known case history of an Israeli man who died from this and it's because his doctors couldn't recognize it nor did they take it seriously.  This is what I am CONSTANTLY going through and why I research this subject so much.  It a very rare reaction even amongst us and it is a reaction that is UNIQUE to masto patients.  This is why it is so unknown.  

If you want more information, let me know and I'll send you what I can.

Lisa