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Absolutely--the more stress I experience, the worse I feel in almost every way. Typically, during a stressful period, I'll feel a little worse every day until I just shut down completely and am forced to rest until it passes....I think of it as kind of an internal timer. When I'm done, I'm done!

Brethor9....I wonder that ALL THE TIME...literally! I spend so much time convincing myself that I'm not having a heart attack or a stroke, I have no idea how I'd ever be able to convince anyone that I WAS! If I were to judge only by symptoms, it would seem that I've had about 498 heart attacks in my life....since the number in reality is zero, I'm fairly certain I wouldn't know an ACTUAL heart attack if it jumped up and bit me...soooooooo frustrating!

Yesssssssss! Feeling I'm having a stroke + heart attack = I LITERALLY feel like I'm losing my mind....like I'm 4 seconds away from tearing off all my clothes and running down the street screaming....of course, I don't have the lung capacity for that kind of activity. Ha!

Hi, all... I haven't been on much lately because I've been SUPER busy (worked 72 hours last week) and traveling quite a bit...and I was feeling relatively good for a while, so I had that cocky "Look at me! I'm awesome and totally normal!" thing going on. Welllllll, ever the jokester, the universe threw me a MAJOR flare last week following a week-long trip to Disney World...I mean, I had every symptom in the book...I kept expecting my head to spin around a'la Linda Blair in the Exorcist. Major GI issues, fatigue, dizziness, panic, flu-like aches, low grade fever, etc. That's all finally subsided, and now I'm left with chest pain and tachycardia, my two loyal subjects; I'm spending all day reasoning with my brain as to why it's highly unlikely for me to be having a heart attack (I'm sure we all have these conversations with ourselves on a frequent basis, but i have yet ANOTHER appt with my cardiologist on Monday) and trying to be somewhat normal. The absolute hardest part for me is to explain how I actually FEEL at any given time when I don't have a specific symptom to point to; I just feel WEIRD. People understand headaches and dizziness, they do not understand weird. How do I define it? Ummmmm....gee, I feel kind of "creepy-strokey-woozy-freaky"???? Yeah, people don't get that--I'd love to be able to pull out the Merck Manual and point to a definition, but I don't anticipate that happening any time soon. Anyone else know what I mean? Any other "weirdos" out there??

Ack! I HATED swings as a child....I couldn't stand the sensation of flying up and down/back and forth. Made me dizzy, nauseated and generally miserable. As an adult, I've been known to try out a swing or two if passing by a playground...and you know what? I still hate them!

Hi, all... I've been working like a fiend and traveling quite a bit, so I haven't been able to visit on the forums as much as usual...I was cooking along just fine (for a change) when I was struck by what I'm suspecting is a new symptom...or a new manifestation of an old problem. I developed a kind of stabby pain in my ears (left more than right) and some odd, "fluttery" sensations (think hummingbirds in the ear canals, but less pleasant). I went to my nurse practitioner since she's always good in a pinch for routine things, and she said there wasn't much going on upon examination...maybe some redness...could be a mild case of swimmer's ear, but nothing at all to explain the symptoms I'm having. Talked to her about my TMJ which has caused some SERIOUS ear pain in the past, and she said that it could be a tensor tympani issue--jaw muscle inflammation wreaking all kinds of havoc on the ears...or IN the ears, as the case may be...I HAVE had major jaw, neck, and back pain recently and just GOBS of stress, so....I suppose....anyone have a similar thing?

I've got both, too, as a result of the super exciting mast cell issues. The Atarax does help, but mostly I've found that it still flares up during particularly stressful times along with my other typical issues (GI problems, hives, etc.). It's not a whole lot of fun, but it definitely is manageable with the right meds--and with a good "bladder" diet!

Hi guys! Sorry for my absence--I've been doing that "working 24/7" thing again....note to self: stop doing that! I'm glad so many of us are close enough to benefit from Dr. M's knowledge....and he's a such a character, it's a pleasure to go see him! I haven't been able to start the meds yet because I anticipate the Atarax really knocking me out, and I have had multiple early-morning meetings this week for which I actually needed to be awake...and alert. Well, mostly, anyway! Next week should start a much slower and easier pace, and I've actually been able to talk my supervisor into allowing me to telecommute 3 days a week starting August 1st--WHOOT! Hope you guys are all doing and feeling well--hot enough for y'all??

Hi there, Dr. M does, indeed, tend to view people as "allergic" or "not allergic"--but, as he explained to me, there's a very broad spectrum within those two designations. So, people with MCAS are definitely "allergic" but not necessarily in any typical way. For instance, I do experience seasonal allergies and had begun to develop some suspected food sensitivities, but I had never experienced anaphylaxis in any way, shape or form (knock on wood). My symptoms were much more systemic with the GERD, IBS, interstitial cystitis, etc. He seemed to understand all of that and actually provided a very thorough explanation (complete with diagrams) about how mast cells can activate inappropriately and how the entire immune system can contribute to this misfiring. I wouldn't say that Dr. M. is MCAS specialist or even that he specifically treats MCAS patients....but he did hit the nail on the head with me, and he prescribed a cocktail of Atarax and Tagamet after going to great lengths to explain the H1 and H2 entities. Hopefully, he'll be able to provide you some assistance as well, but I do understand being hesitant to work with someone who doesn't specialize in MCAS....best wishes!

Hi futurehope, I see Dr. Michael Mardiney, Jr. (he's the father of the group, and his sons are Michael III and Matthew) I hate to admit this, but I found him by accident after researching "old school" immunologists in the area who had published in the area of mast cell activation...so, I guess not totally by accident, but I wasn't referred to him by another specialist or anything of that nature. My mother, an immuno-hematologist by trade, had long suspected that all of my issues (IBS, interstitial cystitis, POTS, etc.) were immune system-related in some way, but she's been out of the biz for a while and didn't know what exactly it might be. It was her suggestion that I track down a true allergist/immunologist, so that's what I set out to do! He did, indeed, diagnose me after the MOST thorough battery of tests ever--specifically, he took a great deal of time evaluating the Immunoglobulin E/IGE Serum levels which are, as I understand it, where the faulty activators of the mast cells reside. Luckily, Dr. M. has an office about 5 miles from me, so proximity and a great professional profile won me over. I had also been developing what I suspected were food allergies over the past several years, so I thought he'd be able to assist with me that at the very least....hope this helps!

Thanks for the response! I'm thrilled that someone FINALLY understands what's been going on with me for the past....ummm...forever! Regarding the meds, I have to be honest....I was exhausted, drove through the CVS drive-up window, dropped off the RX's and told them I'd be back later this evening, so I haven't gotten a look at them yet. All I know is that they're a cocktail of H1 and H2 histamine-blockers and some Nasonex as well--I guess we'll see what's what when I have them in my hot little hands (there were four RX's in all). The only lingering worry now is about these elevated thyroid antibodies--it looks like they're tied pretty closely to Hashimoto's, but, for right now, all of the function tests are well within the normal ranges. Also, I don't mind posting the doc's name and contact info. at all--this is definitely a case of "share the wealth"! Dr. Michael Mardiney, Jr. http://www.mardiney.com/index.html He's in a practice with his sons, and their professional profiles are pretty impressive: http://www.mardiney....physicians.html

Ok, well it's official--I am afflicted with the notorious MCAS! I'm quite fortunate to have found a fabulous immunologist who seems to understand every aspect of everything--seriously, this guys is like Yoda! (He also looks a little like Yoda and must be at least 200 years old). But, in all seriousness, he understands the human immune system unlike anyone I've ever encountered. In order to thoroughly review my billions of test results today, he took me into his conference room and spread out all of the documents, articles, etc. and went over everything meticulously for over an hour--who does that?! Fabulous! So, I'm pretty overwhelmed, exhausted, etc., and I have a question for you peeps out there--does anyone else have elevated levels of Thyroid Peroxidase Antibodies or Thyroglobulin Antibodies in association with their MCAS diagnosis? My other thyroid function tests are all normal, but those two are through the roof which the doc assured me is to be expected with MCAS. Anyone else in that particular boat? Have you seen an endocrinologist? Inquiring minds want to know!

Welcome, Albrown23! As we always say, I'm sorry you had the need to come to the Forums, but I'm glad to meet you--you'll find a wealth of information here as well as a group of the nicest, funniest, most compassionate peeps around. We're all kind of in the same wonky, leaking boat, so there'll be no shortage of empathy as well! Your story does sound similar to many that you'll read on here--kind of a nebulous manifestation and vague "treatments" that never really seem to help a whole lot followed by frustration and a desire to chalk it up to another condition that's better understood and much more manageable...unfortunately, many of us have been down those roads before! Anyway, take some time to flip through the previous discussions, get to know people and welcome aboard!

Congrats on the new gig! I find that heading outside for a few minutes a couple times a day really helps--gets you away from the noise (I'm in a fairly noisy office) and the fluorescent lights...lets you slow down a bit, take a deep breath and gear up for the remainder of the day....also, stay away from the ubiquitous office offerings of cupcakes, candy, cookies, etc!

Oh, the fun never stops, does it? I have this issue occasionally, and in my case, it seems to coincide with my interstitial cystitis flare-ups....which, of course, is tied to the whole MCAD thing.... makes me want to scream, but that would probably cause me to pass out 'cause of the POTS issues...

Hi, all... Just a quick note to say that I'm back in the saddle after one of the worst weeks of my life (and that's saying something!)...long story short, the catastrophic storms that blew through the DC Metro Area on June29th resulted in massive power outages and, basically, a big ol' mess during a wicked heat wave. We had no power along with the added joy of no water due to the treatment facilities also being without power for an extended time. I was totally exhausted and fried from the outages, oppressive heat (heat intolerance is one of my most bothersome symptoms), lack of food and general insanity.When the living room temperature hit 86, my husband I packed up the cat and headed out of town--the cat and I spent most of the 3.5 hour drive wailing like banshees! We relocated to relatives in SW PA knowing that the mountains would be naturally cooler...and that our peeps would have power! In the midst of all of this, my grandfather had major surgery, so I spent the week running back and forth to the hospital while trying to juggle working from a distance. I was displaced, scared, exhausted, fried, worried and generally hysterical. Soooooooo, now we're back, and as is my typical reaction, I'm now physically crashing now that all the crises have passed...everything hurts, I've got the shakes, chills, headaches, hives, stomach aches, chest pains, etc. I plan to spend the next 3 days sleeping and trying to get my life back in some kind of order....hope everyone out there is doing well!

Thanks so much for posting this--I, too, found it fascinating. It read like a transcript of my life...the strange symptoms, widespread inflammation, frustration for me as well as a bevy of confused docs. Here's to hoping the research continues and more answer become available!

Hi, all... So I just returned from my first trip to the allergist/immunologist as I begin my quest for a MCAD diagnosis. Long story short--the doc is very erudite, knows his business and was kind of excited (for lack of a better term) at the thought of having someone with my "outside the box" issues...guess he gets tired of giving allergy shots to kids all day. Anywho, he started with the regular battery of skin tests just to determine my level of allergic reaction. 15 common inhalants later (I was supposed to be tested 4 times for each, but my reactions were so severe after the first round, he quit.), and I'm allergic to everything including the very air I breathe. As a follow-up, he's ordered a serious panel of bloodwork (don't feel like getting up to look at the sheet to see what it all is), and I go back next week for the consult. So, I'm back home, and I feel like death....dizzy, weak,spacey, kind of pukey...just generally sick. Clearly this is a reaction to all of the evil histamines now running around in my body wreaking havoc....but it's not much fun. Anyone else been here, done this?

Ooops! I just realized from your screen name that you're probably 19-ish years old--and here I was recommending a vodka-based treatment! So sorry! Sheesh--I should have figured that out sooner...must be a brain fog kind of day! I don't typically go out of my way to corrupt minors!

Hi there, Your situation sounds similar to mine--excruciating periods on and off since I was about 20. SO excruciating that I would break out in cold sweats, throw up, etc. I was finally diagnosed with endometriosis, and it seems as if that's a fairly common diagnosis amongst the POTSIES. There's not much that can be done aside from surgery, which I'm not yet willing to do, so I use NSAIDS which seem to work really well--ALEVE is my fave. Also, my old gyno (and I do mean OLD--he was about 87 before he retired) prescribed 2 shots of pure vodka 2 hours apart (take 2--wait 2 hours--take 2 more--4 shots in all)at the onset of symptoms..I kid you not!! He said it was an "old-fashioned" treatment that worked wonders because of the vodka's ability to curb the production of prostaglandins--I'm not sure of the science behind it, but I was desperate, so I gave it a shot...works like the proverbial charm! I'm not suggesting that booze is a cure-all, and I know lots of us can't tolerate it at all--but, for whatever reason--it does work! In any case, I'm with Rach--seek whatever relief you can find...hope you're feeling better!

Hi there! If you search the forum, you'll find tons of threads on this subject as it's one that can cause quite a bit of anxiety in us POTSIES. I fly frequently for work (blah!), and here are some tips I've accumulated over the years: * Hydrate! Before, during and after the flight--I can't stress this one enough! * Allow yourself plenty of time so that you're aren't rushed while parking, checking luggage, waiting in the security line, etc. * If you have a heavy bag that needs to go in the overhead bin, allow someone else to put it in there for you--I don't know about you, but lifting heavy things over my head sometimes results in major dizziness. * Try to snag an aisle seat--preferably in bulkhead or an exit row---extra room means extra space to stretch out, less pooling in the lower extremities and fewer claustrophobic feelings. If you can't reserve one of those seats when you book the flight (or if they try to charge you), wait until you get to the gate and NICELY ask the gate agents--they'll often make the switch for free! * iPods and in-flight entertainment are lifesavers when it comes to distracting you from the length of the flight--most airlines now offer wi-fi so you can use your laptop, iPad, etc. Delta utilizes "Go-Go" wifi, and you can get 15-minute increments for free. That's all I can think of for now, but that strategy has gotten me through more flights than I care to remember--so kick back, try to relax and enjoy the flight! Tiny bags of peanuts for everyone!

Well, hey there, neighbor! Then you know all too well how the weather around here can wreak havoc on well-intentioned exercise plans...if it's not boiling hot, it's snowing, icing, storming, earthquaking or hurricaning (yes, we had ALL of those last year!). We're also about 20 miles from DC on the MD side. Now that I think of it, I remember you mentioning that you're a patient of Dr. Abdallah's in Reston--I have my first appt. with him in 2 weeks! Keep up the good work with the gym, and I'll try to do the same! (Hey, wouldn't it be weird if we belonged to the same gym??)

This is popping up at a very opportune time as I just joined a new gym after being something of a lumpy couch potato for the last year or so....my husband and I mountain bike pretty frequently, but the DC Metro area climate prevents that from being a year-round option (for instance, today the heat index was 105..blargh!). The gym I joined has several pools and tons of ellipticals, bikes, treadmills, etc. as well the as the typical weight machines, and I love all of the class options as well (kickboxing does wonders for stress!). I find that I sometimes hesitate to push myself too much in public for fear of having some kind of episode, so I watch my HR monitor like a hawk, and that, unfortunately, results in an even less intense workout. I'm trying to increase gradually until I'm at the "Show No Mercy--Take No Prisoners" level, but we'll see how it goes....my HR is typically right where it should be for carido workouts (about 155), so I'm hoping I'll become more confident as time passes.

I'd say I'm moderately symptomatic these days, and I have to fly constantly for work (Note to self: get a new job!). The biggest challenge for me is motion sickness (well, aside from the rush-rush-rush mentality of airports in general and the standing-in-line demands of security in particular). So, I have to take Dramamine which causes a bunch of unpleasant side effects on its own--I'm constantly having to decide which I'd rather deal with--having a full-blown POTS attack or throwing up for the duration of the flight! Good times! In the end, I always take the Dramamine, hydrate like crazy, listen to my iPod (or take advantage of in-flight entertainment), stand up/move around as much as possible and try to keep calm. For loooooong flights, having a sizable layover is very helpful for me....it allows me to kind of "collect" myself and assess my condition before continuing. As soon as they perfect "Beam Me Up" technology a'la Star Trek, we'll all be better off!

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!