Hi Kerin!  


An WELCOME to our home.   I hope you do feel welcome here with us.  Unfortunately we are a group we'd rather NOT welcome you to, but since you've no choice in this either, welcome anyway!


I know exactly what you're feeling in your concerns about your increasing frequency of symptoms.  I used to go through an anaphylactic attack about 1 a week for over a year until we added Singulair to my medications and that is what brought it back down a tad.   I go through a crisis about one every 2 months now, so it's a big improvement, although ideally, the hope is to bring our attacks down to one a year or less if possible.

Most of the reason why you have so many is due to not being medicated well enough.   Most of those are breakouts and I'll bet you Kerin, that much of yours is due to your emotions.   You see, our emotions release extremely strong mediators from our stress system.  The mast cell has many receptors on it for these mediators and it triggers them very easily.  

Although the literature talks about anxiety being a trigger, they don't mention the other emotions which release mediators as well.   I've had too many happy feelings create triggering as well as that of being put on the spot and being surprised, frights, and excitement.   These all can create issues.

However, I can tell you all of those fears you have, they are major degranulators and I'll bet you anything that they are causing you a great deal more trouble than you know.   You've got to get some medication to help with that, Dear.    I understand why you would fight against it, for if you've had too many accusations of emotional problems in seeking for help and answers, this will make you adverse in wanting any kind of medication which reinforces this suspicion.  I've fought against it myself, but this is because I'm naturally a very positive kind of person and those accusations came because my masto was dormant and triggered by a hysterectomy.  Living in Brazil, the mui macho doctors thought it was all psychosomatic, excepting my gyno and so it was a very hard fight to finally find doctors to take me seriously.  (I had to boycott the men and work only with women!  Go figure!)  It did leave me emotionally scarred and took a lot to regain my confidence.

However, now that I'm a few years away from all of that and have my diagnosis, I feel less threatened by these accusations and if I did need to have some of these meds, I'd not hesitate now to ask for them for they do help a great deal!!!

Kerin, as you've seen for yourself, a panic attack can mimic your anaphyalxis and since you say you're terrified all the time, then you are in a bad spot and must get ahold of your emotions, QUICK!!   You have no choice, you must get control over them for they are your very worst enemy!

I know this sounds hard, but it is imperative that you do so and without mercy on yourself.  Our emotions are our worst enemy and since this is something that your doctors can't control, it's up to you to find the means to get this under control.   You must force yourself to gain dominion over them and you must find whatever means you can to do so and if that means talking with some doctors who can give you medications to help you regain this control, especially when it's getting out of hand, then that's what you must do.   Whether it be a stint of 24hr meds for a few months, good, or whether it's a situation of where you can use something only for when you feel the feelings getting out of control, then so be it.  Whatever means you can find, you must find them for those kinds of emotions are deadly for a masto patient and you've got to get something to help you.

You also need to talk yourself down when you are into situations which create this anxiety and thus reactions.  You've got to tell yourself to settle down, to breath moree deeply, to relax, etc. and literally talk yourself down from a reaction, regaining control over those emotions.  

I don't have issues with this, Kerin.  I'm not an overly emotional woman and yet I've had situations where if I'd wanted, I could have let go and added more fun to the parties I've had with my reactions.  

Okay, so you say that it's not fair for me to say what I'm saying then, but  then I've been through some pretty serious and frightening situations and it's because I've kept a tight lid on my emotions that it didn't make the situation that much worse.   My reactions are severe and I've been in spots that my doctors just watched in awe expecting me to get freaked out and yet I kept a lid on my emotions knowing that if I let go of them that they would make everything much, much worse.  It's probably what kept me from being intubated in one situation and who knows what with plenty of others.   And, the very MAJOR reason why you must put a lid on your emotions is for the benefits of your doctors.   They will automatically turn off the moment you let your emotions get out of control.   They will contribute everything you are going through as nothing more than emotional and won´t think past it.  This is because they are trained to think that a hysterical woman is nothing more than just emotions and that it´s nothing important whatsoever.   They see plenty of "out of control women" and so they totally reject that show of emotion as anything important.

So, for your own sake you must gain control over your emotions and force yourself not to give into them no matter how frightened you are.   Leave that for AFTER the attacks, not during.

Now, how can I help you get over that fear, for it's easy to say get over it, but it's hard to say how.  

Your major means of conquering this fear is to STUDY!  So much of your fear is due to your ignorance as to what is happening and the only way to throw off this fear is by studying masto.   This is how we can help you, and I suggest that you begin talking with us about what your episodes are and let us pick them apart as you go along and we can help you identify your triggers and understand the reactions and even tell you whether or not you were in real danger.   So very often, Kerin, due to our fears of not understanding or being able to identify whether or not we are in real danger causes our anxiety levels to increase and this releases those mediators which in turn trigger so much activity.  This puts us constantly on the edge.  But the more you understand and are able to recognize when you are in real danger, the more secure you become in all of these episodes.

I'm going to give you a project as homework and I think this will give you some help in feeling more secure.    I want you to call up the local Red Cross and find out when they are giving First Aide classes.   I suggest you enroll in them.   By having some first aide training, that knowledge they use to teach you what to do in an emergency to save another person's life will end up teaching you to recognize a real emergency.   That training also teaches you to keep your cool and your head when facing them.  It teaches you to recognized real emergencies and what to do in the face of them and this will help you gain some recognition as to how to deal with your own emergencies and help you to regain some control over your situations.   It will help you to feel less helpless.  

Another thing is this...you've probably not been given any instruction as to when to step in with your meds in order to head off an attack.   This is something that most of us who are not in the hands of experts end up teaching one another.  

When you feel the very first sign of trouble, be it brain fog, or weakness or pain or difficulty breathing or just feeling that something isn't quite right, for the next few months anyway until you gain more understanding, you need to take one of your telfasts.  In the States and Brazil we call this Allegra and it's an excellent medicine.   If you can take that or perhaps liquid benedryl, which is very quick acting, you can probably revert any serious reacting which will take you into an attack.   This is how you head it off and turn it around and thus avoid the Epi and a trip to the ER.   Very often we get to a certain point where out bodies are showing that we've run now of antihistamine in our systems and we are needing more even though it's not the scheduled time for taking more.   Idealy we take our meds every 12 hours because they are made for that time period, but there are days when it's just not sufficient due to either physical activity, or heat or foods or other reasons and we find that we're reacting in the middle of the afternoon or even morning.  I've had it where I began some serious reacting only an hour after taking my morning dose and I had no choice but to step in with another dose.  If this is what my body is telling me, then I don't stay stubborn and stick to the proper time but I listen to my body and take that extra dose because otherwise I'd be in serious trouble.   My doctors now realize that this is exactly what I must do for the problem is that my MCs are trigger happy and they will easily overload my system and my normal doses of meds are not enough to keep the flood in check.  This is why they now say, TAKE MORE LISA when I'm reacting like that.  

So, this is something else you need to learn that in upping your doses, taking that telfast whenever you feel any serious reacting start up, this will help keep you out of trouble.

Sorry for the long post, but I hope I've helped a little.   Keep talking with us and others will chime in and give you more understanding and together, as a group, we'll all work together in helping you regain some control.


Lisa

Welcome Kerin, I hope you are already feeling better just from what you have found in the way of information and encouragement here. I agree with Lisa that a huge step forward for you might come in gaining understanding of what is going on in your body, and there is so much information here that will help you with this.

I am also Australian, but from Melbourne and living overseas at the moment. I think there is actually a good understanding of allergies in Australia, being a country with such a high incidence of things like asthma, but like anywhere in the world there are only some doctors who get it, and with mast cells disorders being even less understood generally, you still have to find the ones that can help. I was really surprised last time I was home, I was trying to explain to our GP about my sons suspected MCAD, and the skeptical reaction never came, he wasn't puzzled or surprised by my suggestion, agreed it seemed likely, and described the exact regime of meds that are recommended here. He was quite familiar with it all. So if a local suburban GP has that knowledge of activation disorders, it's out there'd, just not widespread enough for all doctors to know about it.  There is a hematologist in Melbourne who is apparently very good, listed in the doctors thread, and the RPAH  in Sydney has a great allergy unit, with good resources, but I'm not sure how much they know about mast cell disorders. You  might have to tap into some networks if you need to find someone knowledgable in WA. But if you have been given a diagnosis of a mast cell disorder then your immunologist must have some knowledge in this area.

For people to give you some more specific ideas it would be helpful to know what tests have been done so far, and what you do know from those tests.  Have you tried keeping a diary of all the things you consume and are exposed to - to help identify triggers.  Looking for triggers rather than allergens takes a little more time and patience, but reading others' stories and experiences can help give you ideas of what to look for, and how to understand your threshold for tolerance.  Hormonal changes of perimenopause can contribute to your reactivity.

Good luck, you have a steep learning curve at the moment while you get a handle on all this, but it will make such a difference to have support from people hee who understand and have some great knowledge to share.

Ruth

Kerin,

Tramadol is a codeine derivative, I believe, and yes, it is a known MC degranulator.   Some people can tolerate them, but most of us can not.   This could be an issue that you have become sensitive to it.   I can't use any codeine or opiate related meds, they put me into hyperdrive right away!!!

Lack of sleep is a major MC degranulator!   Make sure you get plenty of sleep, especially before big events, this will help you tolerate better the big event.

Good to see you've already recognized the emotion factor.  Your thoughts are very powerful and will quickly trigger emotions which cause a release of mediators which then trigger the MCs.  Keep those thoughts under tight wraps too then!!  So, Good Girl!!!!   If that means you've got to ask your doctor for some valium or something, then do so!   You don't need an SSRI, but something which will help calm you down a tad.   I can't handle SSRIs for they interefere with my already low serotonin levels, they exacerbate my masto.   But when they need to give me some sedation for procedures, they choose meds which are not SSRIs.   Sometimes a muscle relaxant is enough to help do the trick, not doping you up, but just calming you down a tad.  This can be extremely helpful for those exciting events of life.   And, you can also take an antihistamine like Hixizine or Benedryl which is one of the old kind of antihistamines that cross the blood/brain barrier.  They have a sedating effect due to this fact, but this is because they allow the anithistamine to go up into the brain and work on the histamine which is being released up there and this can help keep your thoughts from triggering you so much.   This is worth talking over with your doctor.   You also need to be on Ketotifen, which has that ability to cross the blood/brain barrier.  It is a MC stabilizer, which is my so many of us use it.  It will give you more stability, but it will also help give you a bit more calm as well due to that going into the brain.

I'm so glad we can help you Kerin!!  This is what we're hear for!!!   Keep talking with us and the more you do, the more we can help you figure triggers out and this will in turn teach you about your disease!!!

I love to hear of people who are finding ANSWERS!!!!!!!


Lisa

Welcome! Don't have anything to add to Lisa's advice but just wanted to let you know that I'm glad you found us, but am not glad that you have been suffering!

Hi Kerin,

That clinic roulette is a bit of a double-edged sword isn't it, sometimes you can actually get lucky and find that an alternative doctor picks up on something the last one missed, or has something different to offer. Or they don't. Then you just have the frustration of explaining yourself yet again, and being looked at sideways by another skeptical doctor.

Telfast is supposedly a 24 hour medication, so maybe the theory is the dosage you take during the day should cover you through the night, and the zyrtec would be extra coverage. Histamine levels are typically highest in the early hours of the morning. I found a discount pharmacy in Melbourne, Chemist Warehouse. Their antihistamines were much cheaper than the local chemist prices. you can check their website for locations in WA, online ordering, and to compare their prices www.chemist warehouse.com.au

Has anyone suggested a mast cell stabilizer? Ketotifen isn't readily available in Australia but it can be ordered from NZ. For some reason it doesnt seem to be used in Aus but might be worth asking for. It seems like antihistamines aren't enough to make a significant difference for you.

Hang in there, and keep asking questions and learning what you can from the great advice and information  here.

Ruth

Kerin,

This is the regimine that Dr. Castells put me on.   At the time I was going through 1 episode of anaphylaxis a week and her changes brought it down to 1 every 6 weeks.   Now they are even lower!!!

1 allegra (fexofenadine) 180mg  2x day  
1 ranitidine 300mg  2x day
1 singulair 10mg  2x day
6mg ketotifen  1x day


This is what I take daily on a routine basis at 6:30 AM before going to work and at 5:30 PM before dinner.

I will also take up to 2 more allegra for SOS situations and have on bad days even had to take a 3rd more, but it´s good to sometime vary for the ranitidine (h2 blocker) for allegra (H1 blocker).   If I´m having loads of diarrhea and this is taking me into trouble, then that´s when I take the ranitidine instead of the allegra.  



So, Kerin, take a look at your meds and compare them with mine and let´s see what´s lacking with yours.   You may not need the levels I take, but mine are pretty much average and not are high doses.  The only dose that is considered "high" would be the ketotifen, but others say they take this or even up to 8mg.   So, lets see what you come up with and what might need adjusting.  

One question, are antihistamines over the counter there for you all?


Lisa