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Tristessa

New Here - History Of Mvp, Syncope, Pots, Possible Mast Cell

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I was diagnosed with Mitral Valve Prolapse and Vasovagal Syncope about 10 years ago. At the time, I was having palpatations, shortness of breath, chest pains and fainting. No treatment was started until the symptoms again reappeared in 2005. I did start Atenelol for about 1 month back then but had adverse reactions to it (lower bp, lower pulse, dizziness, more fatigue and fainting). I stopped taking Atenelol because I found out I was pregnant. Since that time I have had 3 children and increasing 'odd' symptoms.

I have been doing a lot of research over the past few months and have now come to the realization that I suffer from dysautonomia and have symptoms characteristic of POTS. I have been keeping my blood pressure and pulse readings at various times and have performed numerous 'poor man's tilt table' tests on myself and the increase in heart rate is there everytime (usually doubles). I suspected at first that my bp was dropping upon standing because of the way it makes me feel but was surprised to find that it actually increases by 10 Systolic & Diastolic.

Immediately upon standing I get a head rush type feeling. I have to concentrate on my breathing because it feels like I got the wind knocked out of me. I get the blood pooling too.

I really feel this traces back to my early years in life though. I have never been able to tolerate medicines very well and never knew why. I have fainted for seemingly unknown reasons. I also can't run or exercise without getting short of breath and skyrocketing pulse. I have recently been waking with numb 'sleepy' hands and 'dead' feeling legs.

Over the past few years I have become intolerant of multiple foods and more chemical sensitivities. I smell phantom smells like something is burning that come out of nowhere and leave just the same. I can't breath dander from our chickens without an immediate reaction. I get sore throats out of nowhere and seem to always have sinus related problems.

Does this sound like anyone else here?

I have been reading here anonomyously for a few weeks and I really hope to make some new friends. :)

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Welcome, Tristessa!

It sounds as if you and I could be related what with all of our ailments and marvelous maladies! You've found a wonderful place full of witty, warm, wonderful people (clearly, I'm on an alliteration kick today!), and though I'm sorry you had to find your way here, I'm glad you did--I was a newbie just a few weeks ago as well, and you should check out my first post as it describes some of my symptoms and experiences in-depth, and it's far too boring to repeat in its entirety! (I think it's called "A Circus of Symptoms," or something like that, and you can use the search function to locate it, if you want).

Your post actually reminded me of some relatively new issues I'm dealing with--the food intolerance. In the past few years, I've developed a severe shellfish allergy as well as intolerance to eggs, slow-cooked oatmeal (I know, that one's weird) and milk (not all dairy products--just milk) Sigh...

Anywho, welcome, and I look forward to chatting with you!

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Thanks for your reply. I am about to search for your post but wanted to add (after seeing your signature) that I also suffer from Interstitial Cystitis and GERD but directly linked to food intolerances. I actually had IC as a child but it wasn't diagnosed as such. I also have a weird jaw (TMJ?) that 'clicks' out of place if I open my mouth wide. I also get extremely frustrated and overstimulated quite easily with lights, sounds, smells, etc. Our symptoms do sound very similar. At least I don't feel so strange anymore. :) There IS at least ONE someone like me. Thank you again for replying.

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Wow....now I'm fairly CERTAIN that we're related...the overstimulation is kind of a hallmark symptom for me as well. Just this weekend, I was tempted to crawl under the booth at a trendy new restaurant my husband and I were trying out--it was just SO loud and SO bright, I felt as if I was going to cry or jump out of my skin. Our house resembles a weird,1960's hangout with no overhead lights and soft blue bulbs in the few lamps we do have, and we make every effort to minimize noise and heat....so, I guess it's more like a grotto in here! Sooooo, welcome to the family, sis...I look forward to getting to know you! :D

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I definitely have similar symptoms to you. Have you ever tried antihistamines (H1 or 2) have they helped? Do you flush easily? Important to stay hydrated. Reasonable to have your doc check a serum tryptase to help rule out mastocytosis.

Mine all exploded after an anaphylactic reaction to contrast. Now my most bothersome symptom is reactions to all scents.

More deets on my blog if curious...

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I definitely have similar symptoms to you. Have you ever tried antihistamines (H1 or 2) have they helped? Do you flush easily? Important to stay hydrated. Reasonable to have your doc check a serum tryptase to help rule out mastocytosis.

Mine all exploded after an anaphylactic reaction to contrast. Now my most bothersome symptom is reactions to all scents.

More deets on my blog if curious...

I haven't tried antihistamines - yet! I am looking for the dosage/type information. Perhaps you could point me in the right direction. I do something that feels like flushing. I get all hot and slightly sweaty but I haven't turned red. I am not sure if that qualifies or not for mast cell issues. I also seem to have a malfunctioning thrist mechanism. :( I hardly ever feel thirsty and sometimes forget and go long periods of time without drinking a thing. (Bad I know!)

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Welcome! You are not alone! Not feeling the best today, so I can't post all that I normally would but just wanted to say hi.

Thank you & Hello to you too! I am sorry today is not a good one. I understand that all too well. Feel free to reply when you feel up to it.

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Tristessa check out my blog, the mastocytosis society webpage http://www.tmsforacure.org/, and the mast cell disorder patient forum for interesting patient stories http://mastcelldisorders.wallack.us/yabb/YaBB.pl

see what you think.

Ideally a doc who knows about them would see you and rule out other causes of those sweating episodes and see if you need a mast cell disease work-up. Feel free to PM me if I'm not making sense. The symptoms of mast cell disease are very vague and many conditions have overlap. Some of us don't fit into a specific diagnosis but still find that we improve with antihistamines and mast cell stabilizers.

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Welcome Tritessa!

It is so great to know there are others out there just like us! I am newly dx with dysautonomia (although I've had symptoms for 26 years) & trying to wrap my fogged up brain around all the info! I was also dx with IC 2 years ago and even tried the rescue therapy with catheters twice a week for relief. A strange thing happened to me unexpectedly, after having I injections in my back at l3 l4 and l5 last winter the bladder pain and pressure I experienced since childhood just disappeared. Not sure if it is a good thing or bad, but I'll take the relief!

I have also been having mast cell like symptoms becoming more severe with the last potsy couple of months. I hope you find guidance and community here, I know it is such a relief to log in at night, for me and see I am not alone

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