Hi Ramona, Sarah and all,

I learned something new (again)....I never thought to put food in my mouth and hold it there for a bit to "test" it.  That's sooo much better than swallowing it and having even more symptoms! Thanks Ramona

Sarah, I wasn't sure how to answer your post about tunnel vision.  Because I have ANS dysfunction as well as a mast cell disorder, I honestly don't know if the autonomic disorder or the mast cell disorder causes the tunnel vision.....I think mast cell specialists would say it's mast cell and autonomic neurologists would say it's ANS dysfunction.  I am trying to "learn" which reactions are from what, but the two are so interconnected at times that it is not always possible.  Ramona, do you have an opinion about this?  I thought it was mast cell until I recently read an article about POTS and it specifically mentions tunnel vision as being a symptom of POTS.  

Do any of you that have Masto and do NOT have POTS, experience tunnel vision?

In answer to your question about hydration Sarah and missmarple, some of us with autonomic disorders have low blood volume. Mast cell disorders can also cause vascular problems. Some patients have blood pooling in their legs. So the more hydrated you are, the better your circulation will be and the less symptomatic you will be.  (Again, I am not a nurse or doctor so if I haven't stated this correctly I request correction from the forum leaders....please)    All I know is, if I don't drink tons of water in a day, I will have more tachy, more skipped heart beats, more difficulty thinking and get really dizzy.

I am not sure how old your girls are Sarah, but there is a U Tube video posted on here from a mom (sorry I don't remember who it is or where it is posted)....but she has been so kind to share  teaching her 5 year old son how to administer epi if she needs it.  Pretty amazing....

I hope and pray it never comes to that, but IF you do have a mast cell disorder, you can never be too prepared!

Take care and keep us posted on how you are doing.

Hugs, Lynda

I was down to a couple foods for a long time and it seemed like any change in my food, air, med or emotions would cause anaphylaxis. It took a super strict elimination rotation organic diet--reading about chemical sensitivity and environmental illness for tips with coping with the scent side, making med changes one at a time and slowly, getting lots of rest and trying to limit stress for me to make even baby steps forward. Had to get rid of my old clothes that had perfume and scented detergents on them and start from scratch. But every step forward, or even sideways is better than backward. Do not give up! You can do this!  Each one of us is different so keep checking in and picking everyone's brains for ideas.

Oh and wow did I leave out having my doctors work with a MCAS expert? Wow that was silly of me. Key step as they were able to get me on some meds to crank the reactions back slightly so I could start to figure out what was setting me off.

Hang in there!!!

Thank you all for the great tips and support.  I saw the allergist again yesterday.  He is referring me to Dr. Weiler, whom I have heard about so I'm glad to see her, but the doctor I saw feels I'm taking Benadryl for anxiety (he put it nicely), but I'm so frustrated that you have to prove to so many people that you're not making things up.  Who would make this disease up???  I have been a nurse for over 10 years and never saw anyone with these symptoms.  I know anxiety is a nice umbrella to put everything under, but at least I'm getting somewhere.  I will have autonomic testing too.  I was wondering if any of you have had to take proton-pump inhibitors like prilosec or protonix.  I HAVE to take them for a month, and I just started.  It is making me really dizzy and my throat hurts--it's making it harder to swallow.  Anyone have an idea which one works the best with the least amount of side effects?  Thanks again!  Sarah

Oh this is sooooooooooooooo my question to answer!!!  

I totally trigger from smells, and GARLIC and ONIONS!! They aren't even allowed into my house in any form! I am better now with my meds protecting me, but those odors (and certain other ones) will start up my triggers. The garlic used to be my worst, though!  AVOIDANCE is the key....

Hi Deborah--The cooking smell triggers are new for me and so is the cologne.  You're right--I instantly dislike the smell of some things now and try not to breathe it in.  I am only taking Claritin once daily--do you know if you can take it twice?  I've also heard people say Allegra works well for smells... I haven't tried that yet.  Thanks-Sarah

Im slow on answering and then I read posts that came while I was posting lol... I do react to smells quite a bit--but so far Ive been lucky and most of the smells Ive reacted to are chemical in nature--floor stripper, wax, something that they spray on flowers at a florist shop. Youve got it hard trying to cook and having reactions. I would advise you to use a fan in the kitchen (that helps me) , dont cook with the things that trigger you often and take your rescue med!
Good luck
Ramona

Hi Sarah,

I am so sorry you are having so many reactions all at once.  Please remember that things WILL get better. All of us were at the same place you are at, at one time or another! The most important thing is to listen to your body.  You know yourself and you know that something is not "normal".....and as Ramona said, "Don't let any doc make you feel like it is all in your head or it's "just" anxiety". Many of have experienced the same thing.   You are right...who would want this disease anyway??   You only have to read all of our posts to know that you have pretty similar "reactions to triggers" like many of us have.  OK?  Head up high   As a nurse I know you are used to making tough decisions and being assertive.  YOU CAN do this!  And there is lots of help and support here!!

I know there is A LOT of information coming at you right now, but remember to:

1) ONLY change ONE thing at a time.....so if you need to take two PPI's, start with only ONE.  If you do ok on that one, then add the second one.  That way, you will know which one (or both) are causing you to be reactive.  I take Nexium now, but have been on other PPI's and several of them caused stomach aches, cramps, etc.

2) When you start anything new, take as small of an amount as you can and work your way up to the optimal dose.  If you have a capsule and it is a time release, then you can't open the capsule but you can drink tons of water with it when you take it (this is what I would do, but once again you need to check with your doctor).  Sometimes we are so reactive that everything sets us off. Yet, sometimes new medications are a trigger and will always be a trigger so start really slow.  And as Ramona said, stop taking it if you feel worse and call your doctor.

One thing you may want to be aware of is that some of us react to the dyes and fillers in medications. I am NOT saying this will happen to you, but if you are having a lot of reactions to new meds, you may want to keep track of the "inactive"  ingredients in your meds in case there is one common denominator.  I know it seems overwhelming to have to do so many things!  If you have a close friend or spouse or parent that could help you with this, it would take some pressure off you as well.

My daily meds:  Pepcid 20-40 mg. 2 - 3 times a day.  I have not been able to find an H1 blocker that I don't react to and my docs are still working on that with me.  I also take Gastrocrom, 8 vials a day.  I take alprazalam (Xanax) as needed and to sleep at night.  My emergency meds are: prednizone, twin jet epi's, Xanax, an albuterol inhaler and extra Pepcid.  Many patients take liquid Benedryl as it is fast working.  Please ask, at what dosage, as I am not sure.

If you have not taken a lot of medications in your life, and you find you are reacting to new ones, you can also try to have them compounded.  Then  you are getting the "pure" form of the medication and you can choose what it can be mixed with..... something you KNOW will not "trigger" you..... like rice flour or potato flour, etc.  If you still react to it, then you know it is the actual medication (and not the fillers or dyes) that is the trigger.  Then you will need to avoid it.

I hope that helps!  Let us know how your appt. goes with Dr. Weiler.

Take care....keep us posted!  

Hugs, Lynda


Ramona, thanks for the information about the tunnel vision.  That makes a lot of sense.  As I remember back to my episodes, I know one time I was squatting while weeding in the garden....way to cut off blood flow....haaaaaaa   Can I claim brain fog for not putting that ONE together??