Hi!  I am 43 years old and started having symptoms when I was 25 years old.  I have been diagnosed with POTS but suspect that I have MCAD also.  

When I was 25, I had severe abdomina pain and was in and out of the hospital with fever and pain.  I had many tests run and appendicitus was ruled out.  This continued for 6 months with me being put in the hospital and treated with IV antibiotics, get better, go home, start over again.  In the middle of all of this, I developed a bad cold and was given cough med with codeine and antibiotics.  That night I started having tachycardia.  I thought I was having an allergic reactions to the antibiotic so I went to the ER.  They said it couldn't be an allergic reaction without hives.  They gave me some med to slow my HR but it didn't work.  I was observed and sent home.  I continued to have episodes with my heart racing and pounding.  Six months later, upon doing exploratory surgery, they found I had an abcessed, gangreene appendix.  I thought I would do better after the surgery, but I didn't.

I went to many cardiologists, and was finally diagnosed with POTS after a tilt table test.  I have always had bad allergies (cats, grass, etc) so I decided to take allergy shots.  I reacted so severly to them with huge wheals, they decided to reduce the concentration to 1/100,000 but I still had huge reactions.  I decided to stop taking them.
 
My POTS dr. put me on Florinef.  One night a couple of weeks after starting it, I decided to stop taking it and woke up in the middle of the night with severe tachycardia and pounding heart.  I could not walk to the bathroom I felt so bad.  I was weak and had tremors and diahrea.  I continued to feel bad for over a week even after resuming the Florinef at at slightly lower dose.  Now, if I am even a few minutes late in taking it, I get all those same symptoms again.  I have to take it on an empty stomach so it does not get in my system any later than the "right time".  I also have similar reactions when I am late taking my Pulmicort steroid inhaler or Rhinocort Aqua steroid allergy nasal spray.

I am very sensitive to almost every med.  I cannot tolerate Singulair, most antibiotics, hair color, perfumes in cleaners or detergents, chemical smells.  All of these canl cause tachycardia, wheezing, weakness (I haven't checked my BP during a reaction to one of these.

Now I am having trouble with getting reactions to foods.  I never had an allergy to peanuts before, but I have had 3 reactions to them now with a feeling of my throat swelling, tachycardia, tremors, weakness.  Other foods seem to trigger somewhat milder symptoms but I haven't pinpointed the exact triggers yet.  I am going Sat. for allergy testing.  My cardiologist advised me not to use my epipen (my allergist gave me an Epipen Jr. instead of a regular one due to my issues with my heart).  He said it would make me feel horrible due to my POTS.  He said he would not use it unless it was life or death.
When I had skin allergy tests done 5 years ago I had a reaction with tachycardia but the dr. said that couldn't be from the allergy tests because that would have caused hives or trouble breathing.  Now I'm nervous about going to have skin tests done again.  I've already decided to only have a blood allergy test done for peanuts and pennicillan (I had hives 2 days after I stopped taking it once).
I rarely flush (mostly after excitement or spicy foods) but stress is a huge trigger for tachycardia.  I seem to have little control over it once the surge starts.

I know my post is really long.  I am just so frustrated.  My symptoms seem to keep getting worse and I have lost so much weight between only being able to eat at certain times of the day and trying to avoid my ever increasing list of "off limit" foods that trigger me to feel bad.  I also am afraid that if I get sick there are so few meds I can tolerate.  One reason I'm on the Pulmicort inhaler is that I can't take Albuterol because of my heart racing so bad (24 hours after one dose).  

Any responses are very welcome!

I am assuming that your POTS started after taking antibiotics for your GI problems.  Some people have developed POTS after they took fluoroquinolone antibiotics (e.g., Cipro, Levaquin, Avelox, ...). There is a Yahoo group that discusses adverse reactions to these antibiotics. You can PM me for the link.

Welcome to the group!

Have you seen this article?

http://hyper.ahajournals.org/cgi/content/full/hypertensionaha;45/3/385

If not, try to read through it.  There are actually several different types of mast cell disorders... "primary" disorders like urticaria pigmentosa and systemic mastocytosis, but also "secondary" disorders like classic allergies, MMAS, idiopathic anaphylaxis, MCAS, etc...  Personally, I have an autoimmune mast cell disorder.  It really pays to be in touch with a mast cell researcher... either to see them in person, or to have your local doctor consult with one of them.  It is ABSOLUTELY possible to have an allergic reaction without hives... it's amazing what bad information is out there, even among medical professionals.

Have you tried taking antihistamines?  They might not get rid of your symptoms entirely, but if they help that's another strong indication that you're dealing with a mast cell disorder.

Heather

Welcome Jen!  I'm glad you've found us!   I hope we can help you!

Jen, I've got the hyperadrenergic pots it seems.  I've also got reynaulds too and these are both part of my Masto.  I'm also autoimmune and auto inflammatory and we suspect that I'm also MMAS as well.  

Jen, not one of us is alike and this is what drives the doctors nuts with us for they expect when they read the information that we're going to present with the classic symptoms of IgE mediated anaphylaxis and this is just not how masto works!  They also think that we're going to be like other patients with "normal" diseases in that for the most part those diseases present with the symptoms the way the literature describes the patients to be.  Well, guess what, Jen, Masto is full of surprises and it doesn't like to behave the way they've read it's described to do!  Masto is like a rebellious teen in that it loves to define definition!  Each of us present our symptoms in ways that are different from one another.  The researchers are finding that there are some patterns which are typical of certain forms!  

For example  There was recent research done on the differentiation between ISM, (Indolent Systemic Masto), MMAS (Monoclonal Mast Cell Activation Syndrome) and MCAD (non-clonal MCAD).   This research showed that the MMAS patient doesn't have angiodema, it runs more with men than women, and it doesn't have hives.  It also has severe cardiovascular reactions and syncope.  Whereas the other two forms end up showing more cases of angioedema and urticaria and less syncope and severe cardiovascular symptoms.    The doctors are only now beginning to study these different symptoms trying to figure which group does what!  It's been LONG in coming!   Now, if after 20 or 30 odd years of researching they are only NOW figuring these things out, can you imagine how hard it is for the lower level doctors?!   And that doesn't include the fact that one day you're going to flush and the next you're going to puff up or have diarrhea instead!   All of this drives them absolutely batty!

And let's take this POTS and Raynaulds.  I've heard some have both and some have either the one or the other and others not have either, but some other kind of issue instead!   This is what makes masto so hard to work with for our doctors for not a single patient is exactly alike!  We are ALL very different and only those doctors who have had the privilege of working with several of us know this!   My dermatologist has seen a slew of the UP kids, which is where the disease is mainly concentrated.  Yet when i asked her how many adults she has she told em that she's got about 20 or so cutaneous masto cases and perhaps 6 or so like me who have no skin lessions - I call us spotless for laughs!  

Yet out of these 6 or so she's got, not a single one of us is alike! I'm her hardest case, but the others are no picnics either!  She had one who was aggressive and passed away a while ago.  Yet even with her spotted patients, they all had their challenges and it takes a doctor who is really on top of masto to know that we are all so very different like this.  

So, what we can do to help you is give you some recent literature which helps to open up your doctor's mind to the other possibilities within the masto diagnosis which may help your doctors to think outside the box!   If you will send me your email address in at PM I'll be glad to send you some recent literature about this new diagnosis.   Perhaps it will help!

Lisa

WE ARE SPECIAL!!!  

Hi Jen and welcome to the board! Im glad you found us. ALOT of the info youve been given by the doctors is wrong... sorry thats how it is with this disorder, we end up being our own expert, except for when we are lucky enough to see one of the handful of real masto experts.

The reason you have that reaction with the florinef and inhaler is that they are both steroids--which forces your immune system to act natural while under its influence. When it runs out, your immune system reverts to hyperdrive again. I agree with Heather and Joan, you really need to try some antihistamines. If this IS MCAD or Masto, that will help you immediately. If it doesnt help, then you know what it isnt. Id bet it will help.

Jen the real masto experts are changing the common definition of what anaphylactic shock is this year (in the midst of it now), so dont ever let a doctor tell you different. YOU know when your body is reacting or going into shock... always insist on what you need.

Start keeping a food/activity/reaction diary right now so you can see patterns and what you are reacting to.

I agree with Joan.. we have trouble with most antibiotics... most masto people do better on a thurd generation of drugs, tell your dr that, they will understand it. I cant take any sulfa and I react on Cipro too--but I can take it IF I break it in half (for 250 mg) and take it 3 times a day, instead of 500mg twice a day.. we are all different and knowing what is best for us, is so much trial and error to see.

I dont have POTS but I have the tachcardia and PVCs, I know how it is... do you take any med for high blood pressure?? I did see an article that they are trying clonidine for tachycardia in place of beta blockers (we cant take those , they trigger us too)...I'll let you know if it works, I have clonidine and Im going to try it and see if it works for me when I have the next episode of tachycardia.

Just remember, we have allergies ye, but not many--most of us have psuedo allergies--which means it might not be an actual allergy but it might be a trigger and react exactly the same.. so if your allergy dr says something tests negative for allergy, you still need to be careful of it, understand?

Vistaril is a great antihistamine to try for reactions, Its an older one and acts really well to help block mast cell reactions all over the body. You can start on much smaller doses too.

The great people here have given you some really good advice.. we're here if you need anything.
Hugs
Ramona

Thanks everyone!  I am avoiding sunflower oil in products.  I've discovered it makes me feel horrible.  I am in the process of trying to figure out what else does too.  It seems like this whole food intolerance/allergy just hit me over the last year.  I don't know of any specialists around this area (about an hour from Cincinnati, Ohio).  If anyone does, let me know.

I was in a hurry to pick my son up from school earlier, so I wanted to reply to some of your questions.
Joan,
No, I have not had a tryptase test or tried Zantac.  I plan on doing both.  Hopefully The allergist I see tomorrow will order the tryptase test. And I am carrying Benadryl in my purse.
Ramona,
I am not taking any meds to lower blood pressure.  I am on Florinef to increase blood volume for POTS.
Sandi,
What I reacted to was peanut oil, then cookie sprinkles manufactured in a plant with peanuts, then one drop of soup that splashed on my lip from soup that had peanut oil in it (3 separate times of reactions). You said you reacted to the skin test for sunflower oil but not other tests.  Were they blood ones?