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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!

It is SO nice "hanging out" with all of you--it's like belonging to a sorority, just with less boyfriend-stealing and fewer cheap-wine hangovers...at least I hope so! I remember the bad old days (before I had any idea what was going on with me physically) when I would go to the ER with great certainty that I was mere moments away from a really exciting demise and being treated as if I was actually slightly delusional and potentially dangerous. It was very frustrating, so I absolutely hesitate to seek out emergency medical care for the whirlwind of symptoms I experience on a daily basis. I hypothesize that we are far more attuned to our body and its functions than the average person, so we'll likely know the difference between a "typical symptom" and a "911! 911!" moment should something critical ever arise. Yes? Maybe? Wishful thinking?

Hi, all... I've been on a quest to find a way to accurately monitor my HR without having to wrangle myself into my Garmin Sport watch chest strap throughout the day. I found the Instant Heart Rate app by Azumio, Inc. for my phone--I downloaded it to my Droid, but it's available for the iPhone as well. It's incredibly accurate (I compared it to my Garmin multiple times in multiple situations), AND it's free! It uses the camera lens of the phone and the flash function to monitor the pulse. It has some great features--you can archive the results according to date/time of day, and you can post it on Twitter or Facebook if you want to share with others. I love the fact that I can now check my HR pretty inconspicuously if I'm in a meeting or some other location where people don't obsessively check their pulses... Anywho, thought you guys out there might like to check it out...by the way, I have NO idea how this thing works....remember when phones were just used to CALL people?

So, it's the next day, and, sure enough, the creepy "strokey" feelings have passed....only to be replaced by chest pains and shortness of breath....awesome sauce! I'm with you, Chaos, if I'm conscious and able to TELL you how crappy I feel, let's all just assume it'll pass at some point. Of course, with my luck, that will result in a necessity to change my tombstone inscription to "Ooops!"...

Katybug, it's so funny that you would say that! My husband and I were at a dinner party recently, and a woman was discussing her recent heart attack and the symptoms that convinced her to go to the ER (pressure in the chest, jaw pain, shortness of breath, dizziness, fatigue), and I thought to myself, "Yes, I call that MY LIFE!" I would NEVER have gone to the ER with those symptoms because I'm used to them...I joke that my tombstone is just going to read, "I TOLD you I was sick!"....sighhhhhh.....good times!

Thanks for the feedback, all! I do wonder about the migraine aspect ("silent" migraine, perhaps?), but mostly, I'm just frustrated and annoyed by the whole thing--feeling "strokey" isn't really all that much fun! I have an appointment with the famed Dr. Abdallah here in the DC Metro are in July, so I think I'll ask him his opinion. (I've asked every other doc in the universe, so why not add another into the mix?) Headed home from the office soon to see if some downtime and rest will bring everything back to normal--though I doubt I'd know "normal" if it pinched on the behind! Ha!

Soooo, I've been struggling with an odd symptom on and off for the better part of 15 years, and I've not yet found anyone else who can really relate. It popped up again this weekend, so I thought I'd reach out to you fine folks to see if I truly am the only one in the universe with this particularly sucky symptom! Whenever I'm extremely tired (and I'm definitely so after this weekend--3 straight days of mandatory 12-hour meetings--gack!) or wired (the servers at the meeting facility accidentally switched the Regular and Decaf coffee pots 2 days in a row, so I ended up with a double dose of caffeine--gack again!), I develop what I can only term as right-sided weakness--the right side of my body feels, for lack of a better term, WEAK, yet neither my strength or my mobility is affected in any way. For example, the right side of my face feels like it's drooping, but a glance in the mirror reveals that it's not. My right leg/foot feels like it's dragging, but it's definitely not. I feel like I can't hold a pen with my right hand, but guess what? I am! At the same time, I get "cold" patches on my right leg/foot even though they aren't cold to the touch. I used to worry about strokes/TIA's, MS, etc. but, as I said, this has been going on for the better part of 15 years and only occurs when I'm extremely tired or wired or both. I've had MRI's, so no big ol' tumors in the head, either. My old neurologist said that it's a stress reaction and that one side of the body can actually go numb for short periods of time. I've never had THAT, but this ***** plenty all on its own....sooooo, anyone else out there? Hello? Hello?

Fabulous idea! A clear, shiny plastic bracelet would also have a glass-like quality to it...thereby further signifying our fragility and the ways in which we can be negatively affected by so many things!

Hi there! What's the greatest source of anxiety surrounding this situation? The elevator trip to the 14th floor? The endless hallways and fluorescent lights of a hospital? Your worry about your mom? Maybe identifying which factors are likely to affect you the most will help you deal with them directly....so you're not overwhelmed with general anxiety....I know it's sometimes difficult to narrow the focus that way, but it does tend to help me (and I have POTS and MVPS as well!)

I've had rosacea for years--including ocular rosacea--fun! I've tried every traditional treatment including MetroGel and low doses of antibiotics. The ONLY thing I've ever found that helps even minimally is prescription Finacea--it's extremely caustic, though and can cause increased stinging, redness and dryness in the short term. Unfortunately, it's no longer working now, and the redness and bumps have come back with a vengeance. Now that I'm starting to explore the MCAD issues as being a part of my makeup, I'm thinking that perhaps this "rosacea" isn't rosacea in the classical sense at all...but ONLY inflammatory in nature; docs have long theorized that rosacea might be caused my bacteria or some such thing. However, if we folks with MCAD have facial inflammation that only MIMICS classical rosacea, perhaps that's why traditional treatments don't work....? Hope this makes sense....I was kind of just thinking out loud!

Ohhhhhh, good question! I've been sitting here really trying to identify what exactly makes the feeling so surreal....it's tough! For me, I think it's the sensation that things are moving in a way that isn't quite "right"....whether that means too slowly or in a blurry fashion, or that my own movements don't seem to add up to what I think I'm doing at that time. Now that I think about it, I realize that my ears often ring during one of these episodes, but that may be from the anxiety that's triggered by the episode itself. Interesting stuff to ponder!

I don't have it constantly--it kind of waxes and wanes, but at times it will last for days or weeks. Had a weird episode of it at work yesterday--I was in the bathroom washing my hands, and all of the sudden, they didn't seem like my hands, and that whole dreamlike, surreal feeling took over. I must have played it off OK because the other women who were talking to me at the time (not that I heard anything they said) kept yammering. I just wanted to get back to my office...actually, I wanted to go home, but driving probably wouldn't have been the best idea at that exact moment!

Great article about the possible migraine-triggering effects of fluorescent lights; I imagine this is why they trigger other issues for us "hypersensitized" folks as well...happy reading! http://well.blogs.ny...gger-migraines/

I have the same issue with fluorescent lighting--especially in large spaces such as Target, grocery stores, etc. Luckily, my office at work has a large picture window on one wall, so I'm able to turn off the overhead and just enjoy the natural lighting. I also have a few lamps for cloudy days--my co-workers joke about me being a vampire, but if that keeps them out of my office, I'm ok with that!

This is one of the most difficult symptoms to explain to others (and one of the most frustrating in general)! I use words like "floaty" and "spacey," but they don't quite capture how I really feel; for me, this feeling pops up at weird, inopportune times and is exacerbated by anxiety. For instance, while sitting at a red light, I'll suddenly feel dizzy, panicked and feel like I might not "remember" how to drive when the light turns green. As if I've never driven in my life, actually. Or I might be in a meeting and suddenly feel like I won't be able to speak out loud if someone asks me a question...it all just seems totally surreal. Dreamlike? I don't know; I'm not sure there are adjectives that properly describe this one!

I think they must teach that particular look in med school ("Frown slightly at the patient while tilting your head slightly to the left. Now raise your right eyebrow. Good! Now you look like you doubt everything they say!") Anywho, yes, I have this exact same symptom quite frequently, and it seems to pop up whenever I have an adrenaline surge for ANY reason (near-miss traffic accident, a shirtless-Brad-Pitt-movie-scene, presenting to a large group of people, etc.). I think it's actually pretty common, but docs always want to test for diabetes and the other go-to diagnoses. Just another joyful symptom of our wacky condition!

HI Heather-- So sorry you guys are dealing with yet another puzzling health issue! I would think there's a good possibility that you and your sister share some physical quirk that manifests differently--my own sister and I went through a similar experience several years ago when she began to have serious hand/arm tremors (she began to refer to herself as Twitchy McTwitcherson) whenever she exerted herself or was tired, stressed, etc. She was tested for everything including tumors, Parkinson's and caffeine toxicity, but the cause was never really identified, and they labeled them as Essential Tremors. However, we continue to wonder if she has some form of dysautonomia that just isn't presenting in a typical way. In any case, she's doing great now with a low dose of beta blockers...we just don't let her pour drinks or carry the crystal! :-) Hope you guys get some answers soon and that your sister is doing well...

Ack! All of these things describe me perfectly--when I tell people I'm not a morning person, this is what I mean! I'm a shaky, twitchy, dizzy, heart-racing hot mess! I've had to start going in to work a bit later so I have time to acclimate to the day before hopping in my car and driving 35 miles on the Beltway in DC...fortunately, I've also been able to snag some telecommuting days, so I only have to be in a moderate rush 3 days a week.....I always say that my perfect job would start at 11:00 and end at noon....as soon as I find one of those gigs, I'll let everyone know!

Thanks for the speedy reply! I'm going to dedicate some time this week to working on contatcing docs, making appointments, etc.--I was pretty symptomatic this weekend (likely due to some unusual--for me--heat, altitude, exertion, etc.) but I was able to get some rest and realize that my workaholic ways are causing more harm than good. I need to be spending more time on things that really matter to me (husband, cat, Ben & Jerry's), and I need to take care of myself so I can continue to do the things I love (biking, hiking, eating Ben & Jerry's) for as long as possible. I'll get it all together at some point....I just know it! Thanks again for the info....I'll let you know how the process unfolds!

So, I've just returned from a weekend getaway--nice break from the traffic, crowds, heat, etc. Hope you all have had an excellent few days as well. Thanks so much for the insight on my symptoms. I think I've been living in the morass of the POTS/MVP diagnosis for so long that I've neglected to look into any other conditions/explanations; as I mentioned before, I've been considering a trip to Mayo for a full-blown work-up, but I'm not entirely sure that's the way to go. I have a top-notch cardiologist here, so maybe I should add a neurologist? Rheumatologist? What kind of doc would be good to discuss/diagnose the mast cell issues? Any pointers would be most welcome....!!

That definitely sounds like the worst day ever...so sorry you've had to deal with all of that. It certainly doesn't help to have people (especially family) just kind of stare at you blankly when you try to explain how you feel. So much of our lives seems to be on a rollercoaster cycle with numerous ups and downs...just know that the "up" portion has to be coming soon! (Personally, I hate rollercoasters....and merry-go-rounds....and amusement parks in general. I'd rather just sit still! )

So, I went ahead and added my signature line to make me all "official"...what a crazy litany of crap!

Hi again to everyone! Thanks for the input--it's good to be reminded that there are worse things in the world than work. I can't say for certain,however, that I'd feel terribly melancholy if I was able to switch jobs for something less insane (I ESPECIALLY wouldn't miss the creepy woman who works on the 3rd floor--she always paws ALL of the doughnuts,bagels, etc. at meetings before taking one--ew!) Concerning my geographic infomration, I'm actually from a small town in Southwest PA (right where Flight '93 went down--it's a terrible legacy, but it helps orient people to my origins), but I moved to AL to attend college and ended up staying there right through grad school both times and one really crappy marriage. (Note to self: Mama's boys = less-than-stellar-husbands). I do think that the docs at the MVP clinic in B'ham are wonderful--they really provided me with some direction when I was at my most flounder-y, and I wouldn't hesitate to go back if I were ever to head South again. (I know this is weird, but the thing I miss most about Alabama is chicken fingers! You just can't come by them up here in the Northeast!) Anywho, I'm digressing again! Kimbellgirl--the world seems to be getting smaller becasue I currently live about 6 miles from Bowie--in fact, that's where I go to Target and Starbucks and all of those other necessities of modern life! I hope you're all planning to do something fabulous over the holiday weekend--we're actually headed "home" to PA to hit the bike trails. I'm concerned becasue it's supposed to be warm (well, by PA standards, anyway), and I don't want to end up a woozy, oozy, dizzy catastrophe. I've found that biking is the one exercise I can tolerate fairly well, but some days I just run out of steam halfway through a trip in the middle of nowhere, and we all sit around staring at each other while I swill Gatorade and contemplate pitching a tent and just living in the woods like the Unabomber for the rest of my life. Keep me posted on how the eye problem goes, kimbellgirl--I find that the trickiest part for me when seeing a new doc is adequately describing my symptoms--the last time I had an eye issue, I was seeing "ghosting" images. The doc and I played 20 questions while he tried to undertsand what I was seeing: Is it double? No, I would have SAID double, wouldn't I? Is it dark? No. Is it wavy? No. Is it bigger than a breadbox? Aaaaaaghhhh! Have a good weekend, folks...party on!

Hi misstraci! About 6 years ago, I began to completely avoid driving whenever possible because I had gotten dizzy during a previous tirp and had to pull over on a VERY tiny shoulder of the road ON A BRIDGE in serious traffic. That caused a panic attack, and then I began to have panic attacks whenever I drove. Hence, I stopped driving altogether. This was not a very reasonable solution as I still had to get to work, school, etc., and my husband at the time was not at all undertsanding. ( Kind of dim-wiited, he was.) Anywho, I slowly began to drive again...started by doing short trips on side roads and then braved longer trips on the interstate. The longer I went without an "episode," the more confident I became. Now I live in the DC area, and driving is like an extreme sport around here--terrifying! I still don't love it, but, unitl I hit the lottery and can afford to hire a car and an appropriately hot driver, I'm stuck behind the wheel... Hope things get better for you soon!

Hi, LindaJoy--thanks for the welcome! The 60+ hours are REALLY starting to wear on me, and I'd love to be able to scale back or quit entirely and do something else (I dream of writing the Great American Novel--don't all former English majors??), but the cost of living and the current housing crisis in the DC area has me and my husband pretty well trapped. I've lived here for 5+ years, and I still don't get the appeal of this city unless you're turned on by insane traffic, crappy weather, non-stop political yammering and a cost-of-living that basically requires you to be paid in diamonds in order to pay your mortgage! Anyhwo, I digress! My diagnosis came about in a rather circuitous way--as I mentioned in a previous post, I had symptoms quite early on. Looking back, my docs have theorized that my numerous bouts with a particularly virulent strain of strep as a child probably damaged my mitral valve and/or ANS because the shortness of breath, exercise intolerance, dizziness, etc. have been present since at least 3rd grade. However, my parents weren't particuarly concerned, and assumed I was a hypochondriac (they were both physicians, bear in mind), so I didn't really have any idea what was wrong with me until after college when I started my first "real" job and was drinking espresso by the gallon in order to keep up. I knew the palpitations, sweating, dizziness, chest pains, numbness, tingling, etc. weren't normal, so I headed to the doctor and spent about 2 months being told I had everything from Multiple Sclerosis to a giant brain tumor (Tumor Week was super fun!). When it was revealed that I had NONE of those things, I took to the medical reference books and hypothesized that I might have MVP. Long story short--I located a doc who was willing to listen to me, scheduled the echo, confirmed the diagnosis and sent me on my way telling me it was "benign" and suggesting I take some naps (Soooooo helpful! I think I would've been better off with Dr. Seuss!) I was fortunate enough to live in AL at the time and finally found my way to the MVP/Dysautonomia clinic in Birmingham where I was diagosed with POTS after a really exciting TTT. At that point, they said I had "Mitral Valve Prolapse Syndrome/Dysautonomia" because I think, back then, that was the most comprehensive diagnosis that could be given. In any case, I now had a NAME for all of this crap, and, guess what? I still felt crappy. It's been a long journey of figuring out what works for me (water, rest, quiet) and what doesn't (heat, stress, caffeine) and dealing with new symptoms as they pop up. To be honest, I could probably use another intensive examination, and I have plans to head to Mayo as soon as possible to see what else they can find and to see if there's anything else I could be doing. *Breathes* Ok, that was a looooong response, so clearly, my issues do not include an inability to express myself! Thanks again for the welcome...and I look forward to chatting with you! PS--I see that you have Sphincter of Oddi Dysfunction as well--I thought *I* was the only one who had that! What a strange sorority to be in!