ophelialit

Hi, DizzyGirls & songcanary, Thanks for the responses! I'm able to combine Benadryl and Atarax if I space them out and take very small doses; because my hives seem to reach a crescendo around noon and abate after 5, I don't necessarily need the heavy sedating antihistamines--as such, I'll start adding Claritin during the day tomorrow and see how I do on that one. And! Concerning food allergies--I'm allergic to shellfish and walnuts and eggs and all kinds of fun things, and I'm pretty careful about what I ingest....when I said, "hot dogs," I should have clarified and said, "uncured, preservative-free, nitrate-free, organic meat products cultivated by Himalayan monks during a full moon ceremony"...my sister is an environmental atty, food nut and all-around health guru....she assured me they were the cleanest "hot dogs" in the world. They sure didn't taste like Ballpark! Just woke up from my afternoon snooze, and I'm slightly less swell-y, so I guess I'm on my usual evening improvement track...we shall see what tomorrow holds!

Hi all! Man, it has been a WHILE since I've been on here to post...since the last time we spoke, my husband and I have moved back to our little mountaintop hometown in PA, effectively escaping the endless, murderous heat of Dallas. Needless to say, I do not miss The Big D. Health-wise, I was hanging pretty tough until about a month ago when some creepy little hives started to pop up from time to time. Now, this has always been a thing that lurked in the shadows like a hockey-mask wielding pain in the behind, but THESE hives were epic....truly something to behold...angry and red and burning and itching and acting as if Cortaid was their favorite snack rather than something from which to flee. They abated a bit, and then....THEN....the sequel....we're talking Jaws-esque....this time, apparently, the hives were taking their attacks personally. I am OVERRUN by these things....they start every morning on my hands and arms, migrate to my legs and end up on my feet...there are THOUSANDS of them, and it feels like I'm being attacked by a swarm of bees at all times. And they look HORRIFIC....my stepmother, a 40-year Critical Care Nurse, was moved to say that it was the worst thing she'd ever seen....so good! I spent the better part of the 4th of July holiday wrapped in cold cloths, slathering myself with liquid Benadryl, eating hot dogs with a scowl...my immunologist has prescribed Atarax, and we're hoping that will help get these monsters under control. There is no apparent trigger or motivation for their sudden appearance or wrath....I'm hoping someone has some insight or can at least tell me their favorite drug cocktail to assist....orrrrrr, favorite REGULAR cocktail....I'm not above trying to scare the hives away with alcohol! :-) Hope all is well with everyone...

Hi all, For what it's worth, I have a FitBit Charge HR because I'm always suspicious of my heart rate and wanted an easy, quick way to check it when I thought it might be acting up....I've found that's it's actually surprisingly accurate. It's spot-on with the heart rate monitors on gym equipment and only varies 1-2 bpm at most from my chest strap/Garmin watch combo. It's inexpensive, comes with great app capabilities for Android/iOS and has some neat features like the ability to participate in step challenges with other uses, sleep tracking, etc. Also, it looks like a thin watch, and everybody in the world seems to be wearing a fitness tracker of some sort... Hope this helps!

Hi all, My Fitbit Charge HR is here and fired up....and I love it! It tracks your sleep cycle automatically, and in the morning you can see when you were restless, awake, sleeping, etc. I don't know how useful that information actually is, but it's interesting! I LOVE how it tracks my HR and steps constantly, and it has a GPS tracking function for exercise (I just returned from a bike ride, and it worked beautifully!). To add friends, simply go to the Dashboard on your app, go to "Friends," click the "+" sign and select "Invite by email." Once you enter someone's email address, they get an immediate invitation--once they accept it, they're automatically added to your Dashboard, and off you go! If you'd like to add me, send me a PM for my e-mail address. Hope to see you soon!

Hi there! My Fitbit Charge HR is on its way even as we speak; after trying a slew of "wearable technology" gadgets for workout/fitness purposes, I decided to give the Fitbit a try for everyday activity. As soon as it's delivered this afternoon, I'm going to hook it all up and give it a whirl. I'd love to join the dashboard and compete with you! I'll shoot you a PM as soon as I'm up and running, and we can go from there. Thanks! Erin

Hi Kellygirl, Thanks for the post--I think, sometimes, we're all so focused on the minutiae of dealing with our everyday symptoms, we forget how many other aspects of our lives are affected...and that includes the sexy bits! Personally, I've not noticed any anatomical differences, but sexual activity triggers me BIG TIME. The "big O" will set off an episode of dizziness, tachycardia and a feeling of general flu-like illness for a few hours after. There are all kinds of things I have to avoid, and it *****...no morning sex because that would take me out of commission for the rest of day....no shower sex because the hot water and steam would turn me into a wobbly pile of goo....also, there's nothing sexier than hollering, "Crap! I might pass out!" three or four times a session. My husband and I take it in stride and make it work, but I can't say that I wouldn't like the ability to be a bit more spontaneous from time to time!

Hi cctalk, I know EXACTLY how you feel with this one--I've had this particular symptom for as long as I can remember. When I was in elementary school, in fact, I used to get reprimanded all the time for yawning CONSTANTLY in class. The teachers thought I was being rude, but I was just trying to live, apparently! It still affects me on a nearly daily basis...I especially notice it if I'm on the phone and walking around while I'm talking. For some reason, the combination of walking and talking absolutely saps my ability to breathe normally, and I end up panting into the phone while the person I'm talking to is wondering why I've gone all obscene phone call on them. However, I can do cardio at the gym and breathe just fine--heavily, but appropriately. The ONLY thing I've found that helps is literally breathing into a paper bag...I'm not technically hyperventilating, but all of the yawning and forcing deep breaths must throw off my oxygen saturation, and the old paper bag trick usually works for at least a little while. Hope you breathe easier soon... Erin

Hi guys! Thanks for the feedback--I'm not on any medications at all right now (weird, right?) because I've actually been feeling kind of human-ish for a while. And I'm still not certain how much to worry about this turn of events because the doc told me repeatedly that the report at the top of the EKG read-out is simply the computer's interpretation of what it's looking at and that it's all meaningless without an actual person's eyeballs looking at it. And, the other thing is that all of my previous EKG's may have said the same thing, but I never got a look at the actual reports--I was just always told they were "normal"...in fact, my old cardiologist in DC still ran a strip EKG with no new-fangled computer bits at all. He'd pull the strip, say "stone cold normal" and I'd be on my way. SOOOOO...this may be a case of evil computers freaking me out (I once got my finger stuck in an ATM, so this wouldn't be the fist time the computer world has dispatched one of its henchmen to do me in), or it may actually be indicative of something. Either way, the new doc didn't join me in the screaming and running up and down the halls, so I guess I'll sit tight and see what happens. Sigh.

Hi Katybug! Ha! Lack of boyfriend = projectile vomiting. Well, if that were the case, you'd think I'd have been really, really dehydrated for the better part of high school and college. Doctors! Who needs 'em! Oh, wait. Right I do. ****. Well, anyway, I feel like this guy is pretty on top of things, but I still feel creepy about the whole thing. I'll keep you posted once I find out what's what...never a dull moment! Take care, Erin

Hi all, It's been many moons since I last posted--I've been busy with works and life and other bits, and, for the most part, I've been feeling pretty OK-ish for me. Until the return of the dreaded PVC's about two weeks ago...the kind that make you breathless and suspicious that a donkey has sneaked into your house with the express intent of kicking you in the chest...stupid donkey. Anyway, I already had an appointment with my new cardiologist on the books (the previous was kicked to the curb when he suggested I try "woman things" like manicures for my palpitations. Yep.), so I went to meet with him today. The good news? He's awesome...he listens, he explains, he shares ideas, he rocks. The bad news? My EKG reads like a bad Russian novel....so many words and shady villains! Sinus Rhythm/ Frequent PVC's/Ventricular Trigeminy Low voltage in precordial leads Poor R-wave progression--may be secondary to pulmonary disease Consider old Anterior Infarct Nonspecific T-abnormality Me being me, I freaked out since, to the best of my knowledge, my previous EKG's have been normal...the new doc slapped me around and told me to calm down, and then we talked about what it all means. Well, the slapping around part didn't really happen, but whatever...I wouldn't have blamed him...I was pretty freaked out! Basically, he said that there's "likely' nothing to worry about because all of those things are fairly benign and insignificant and not a clinical diagnosis, and we already know that something is wonky with my "wiring" and the sinus rhythm is worth its weight in gold and we're going to go forward calmly and do reasonable things. Not, for instance, eat a pack of Twizzlers nervously and run around the office screaming. Soooooo, I've got a stress echo in two weeks and a Holter before that and a million other things I've been through before....BUT...I'm wondering...has anyone else out there ever had/seen/survived such a creepy-sounding EKG? Erin

Hey there! From what I understand as someone newly diagnosed with a spinal syrinx, nystagmus can sometimes be a result of Chiari; I'm not sure if you've been evaluated for--or diagnosed with--Chiari, but nystagmus is actually listed as one of the presenting symptoms on my handy-dandy little pamphlet the neuro gave me.

Hi all, I struggle with this from time to time since I have 8 billion doctors, and on occasion, one or more of them run offices that are slightly less organized than I'd like. In those instances, I become "The Woman On The Phone Who Won't Go Away"...my entire family is in the medical profession, and they all advised me early on to be a powerful advocate for myself right out of the gate. If I feel like I'm not getting appropriate, timely responses, I simply refuse to hang up until someone gets on the phone and tells me something. I've been put on hold for as much as 30 minutes, I've been asked to call back, etc. But if it gets to the point where i need information, and they have it and can't/won't give it to me, I simply stay put. Eventually, it becomes easier to help me than avoid me. I'm never rude, just firm and assertive....at the end of the day, I don't really care if they "like" me or not....if they were doing their jobs properly, they wouldn't have to deal with my reaction. I suggest you become "That Other Woman Who Won't Go Away"....good luck!

Hi there Katie, I have this ALL THE TIME; and they're not exactly double-double....but more like a very strong ghosting; I've got recurrent corneal erosion syndrome, and I notice the problem is much worse when my eyes are having one of their dry spells. And it's always just lettering....text on computer, TV, street signs...I'm telling you....I feel like a walking one-woman circus act....so good! Not.

Oooooohhhh, thanks, guys! Sue, my fiancee and I were giggling about the plural of syrinxes last night....like....syrinxeseses? I don't know....I was tired, and it was easier to laugh than cry, right? I've got a follow-up first thing Wednesday morning, so we'll see what's what...never a dull moment, right?

Hi, all... It's been forever since I've posted anything new and exciting....that's probably because there hasn't BEEN anything new and exciting going on for some time...and for that, I've been thankful. Ever since the idiopathic autoimmune optic neuritis whacked out my right eye last September, I've been laying low in the hopes that any other weird stuff wouldn't befall me. Well, two guesses how that turned out! My neuro-ophthalmologist continued to push for MRI's every 5-6 months as he was on the hunt for evidence of MS post-optic neuritis. I put it off and put it off because, well...it's not fun. But, as he threatened to fire me as a patient and I couldn't afford to lose a really good neuro-oph guy, I conceded and went in yesterday. I got a call today that the MRI came back with an "abnormality" and the doc wanted to see me right away. Naturally, I freaked out and asked for more information; also naturally, the tech couldn't tell me anything. To make matters worse, she asked if she could call me back later because she didn't know when she could fit me in the schedule. Ummmmm, no! You just told me you found a thing in my brain....I'd prefer to know what that might be sooner rather than later, if it's all the same to you. But....she promised to find the doc and get the details of the results so she could tell me more when she called back. Then began the longest two hour wait of my entire life as every horrible diagnosis went through my mind....tumors? MS? Spiders? I called my fiancee who wanted to set fire to the doc's office for handling the call that way....I called my mom who started with the, "Let's not panic until we know WHY we're panicking" routine. And I sat. And waited. Long story short? The woman called back after hours and told me I've got....a syrinx on my spine...in my neck...I couldn't even tell what she was saying....I was like, "A what? A sphinx? A Lorax? What?" So, she explained, and I jumped on the trusty NIH website, and now...now I'm freaked out, but not completely sure the degree to which I SHOULD be freaked out...better than MS and tumors, certainly....and likely something I've had forever as this MRI series was the first that included scans of my neck, but still. Is this from Chiari? Is this what has caused my dysautonomia? Could I have this AND Mast Cell? I mean....just how deformed am I here? I have an appointment to talk to the doc next week, and I'm sure I'll be getting a referral to a neurosurgeon and other specialists.....I mostly feel...weird...even weirder than usual, if that's possible. Anyone have any words of advice? Directions to turn? Suggestions for a really good stupid movie I can watch to take my mind off of things? Speaking of which, *This Is The End* is hilarious if you haven't seen it...

Ugh. This is the bane of my existence; we live in Dallas, and there are always a million events going on....every weekend, all week, all the time. Wine festivals and baseball games, and festivals and concerts and art exhibits and.....well, you get the idea. All of these are, of course, ticketed and have to be planned in advance; my fiancee is forever offering to get us tickets so we can get out and have an adventure or two, but I start filling with dread the minute the topic comes up. Of COURSE I want to go, but the last thing on Earth want is for him to spend money on tickets that may go to waste if I wake up on that particular day feeling tired, dizzy, headache-y, nauseated, breathless, whatever. He understands, but I can't help feeling as if I'm not too much fun from time to time....and I used to be such a good time!

Hi Becia, I LOVE this post--truly. I've been where you are many times, and I'm actually there again right now *waves to you from across the room*. Like most of us, I've been tested and prodded and poked and disbelieved and accused of hypochondria (and worse) and had good days and bad days and days where I thought I had this licked and days where I thought I'd die. I've had every symptom in the book at least twice, and the MINUTE I think, "Well, surely nothing else can crop up!"--something does. When I was diagnosed with optic neuritis back in September of last year after spontaneously going blind in my right eyes, I was pretty much at the end of my rope, so to speak. I did the torturous 3 days of IV SoluMedrol treatment because it was supposed to be the cure-all and bring back my vision ASAP. No dice. Here I sit 6 months later with the exact same lack of vision. Worse was the new round of testing and doctors who were DETERMINED to prove that it was MS or syphilis or Lyme or gremlins or whatever. And now? With ZERO diagnosis and an admission that they still have no idea what caused it or why, I've stopped chasing it. What does it matter? It doesn't change the reality that I can't see, and it doesn't change the fact that I'm still dealing with a host of other crappy symptoms. Like you, I've got to do better at realizing that there is, in all likelihood, not going to be a magic bullet for whatever it is that I actually have....at least not in my lifetime....I'm hopeful that someone may simply figure out the mechanics of it while I'm still around...that would be a huge step in the right direction. I have to do better at dealing with the symptoms and the frustration and anger they evoke. For instance, I'm in Hawaii right now on vacation. Hawaii. And, of course, that comes with its own challenges....the 8.5 hour flight, the time difference and associated jet lag, the heat, the sun, the different foods, etc. I'm having a wonderful time, but I'm constantly on alert trying to deal with my seemingly schizophrenic body. Yesterday, for no apparent reason, I woke up with a crazy-painful case of tendonitis in my right middle finger of all places. Why? Who knows! But it's just the last in a string of inflame-y things...plantar fasciitis, tendonitis in my knees and ankles, blahblahblah. And I'm here with my fiancee who is truly amazing and supportive, but he can't understand what it's like to be me....I'm not saying he doesn't try, I'm saying it's impossible for a monkey to know what it's like to be an aardvark....weird analogy, but you get the point. Anyway, I'm glad you posted this morning....I needed a boost, and a nice helping of solidarity always does the trick. Thanks, Erin

Hi Becia! It's amazing how people end up places they never thought they'd be, right? I never thought I'd find myself in Texas, but here I am....loving it except for the alien plant species attacking me, of course! I've spent all of my life on the East Coast-ish...from Southwestern PA originally, Alabama for 15 years and then MD for another 7...how'd you end up in Ohio, out of curiosity? It's funny you mentioned the air purifier--I had a really nice, top-of-the-line stand-up HEPA air filter in MD, but the ex got custody of it, soooooooo.....yeah. I guess I need to get another one. In the meantime, I'll give the Claritin a go and see what happens. Also? Magic Mike? Yes. Throw in some Fool's Gold (terrible movie, but the man never wears a shirt during the entire film), and I'm sold!

Hi all, Sooooooooo...the never-dull biology experiment that is my life continues! I relocated to Dallas from DC in July and have been slowly acclimating to my new surroundings....lots of open spaces and lovely people and great restaurants and, as it turns out, evil desert weeds that want me to suffer! The pollen count has been off the charts here for the last several days....all kinds of things I've never even HEARD of are blooming, and I feel not-so-good. In fact, yesterday, I was feverish and achy and flu-y and assumed I was coming down with a bug....though, to be honest, I've felt that way a million times in my life and never actually came down with anything, so I should have known better. I've been struggling with a ton of hormone-induced palpitations and general inflame-y things lately, but I ended up in bed early last night having decided to just give in to whatever was going on. I felt a bit better this morning--fever had abated--and read the pollen report in the paper, so I'm assuming that's what pushed me over the edge. I don't tolerate medications well at all (I was able to stay on my MCAS meds all of a week) , so I usually feel like it's easier to deal with whatever ailment I've got than the side effects of meds, but maybe I need to try another strategy until my system gets used to all the....stuff....blowing around here. Any suggestions for good allergy meds....or something else to make my life easier in the meantime? A good Matthew McConaughey movie marathon, perhaps?

Can I join this pity party, please? I'm right there with you, friend! My life, too, has been....not altogether pleasant, and I've gone through what I think is probably more than my fair share of....stuff. But! :Last year, I met the love of my life (cliche, but true) and picked up my entire existence and relocated to Dallas from DC..."Yay!" I thought..."This is it! I'll be happy and feel better, and all of the strife will have been worth it!" And the universe was all like, "Hmmmmm....nope!" Within a month of being here, I developed optic neuritis in my right eye and became functionally blind in that eye. Since then, it's been nothing but a constant stream of aches and pains and other fun things....sigh. And I, too, understand that people have it much worse, but that's not always a helpful sentiment when you're just trying to make it through one more day, right? I wouldn't even say I'm depressed...slightly bitter, though....like a cheap beer... Speaking of beer, do you suppose anyone else will want to join our party?

Hi all....regarding probiotics, I'm a recent disciple of Kefir products....honestly, this stuff is fantastic. I started drinking it after a bout of antibiotics screwed up my GI tract. and it was amazing how well it corrected everything. My fiancee travels internationally for business, got hooked on it while in the Middle East at some point and told me that it would be worthwhile for me to try. You can get it literally anywhere (Target, Kroger's, etc.) in the yogurt section, and they have so many amazing flavors (my favorite is the Coconut/Chia). Here's a link to their website: http://www.lifeway.net/Probiotics/?utm_source=bing&utm_medium=cpc&utm_term=kefir-general-adgroup&utm_content=lifeway-kefir&utm_campaign=kefir Hope it works as well for you as it does for me!

Hi there! It's definitely a small world as I, too, JUST made my first appt. for Monday with Dr. Suleman here in Dallas (well, the McKinney office to be exact). As you can see from my signature, I've been diagnosed with a little bit of everything, but I've been experiencing increased palpitations in the past few months--likely due to the stress of relocating (I moved here from DC in July) and other, various life bits--and I thought it would be a good idea to get established with a cardio group here. I'll be happy to pop back up after my appt. so I can give you a rundown of my experience and what you can expect...good luck to us both!

Katybug--wow! I actually had no idea that the amount of quinine in contemporary tonic water could have adverse affects. I get motion sick at the slightest amount of movement (I'm the only person I know who gets sick in the driver's seat), and tonic water has always treated me so well on flights--actually alleviating dizziness and such. OK then....well! Perhaps sticking with the ginger ale is the way to go until you find something else that works better for you!

Welcome to the forum! As I always say, I'm sorry you had a need to find us, but I'm glad you did! I truly don't know what I'd do without the information and support I've found on this site over the years...you're in good hands.

Hi there micheller--wow, this IS a big trip for you....meeting your boyfriend and a flight all in the same day....how exciting, though! And yes, I do live in Dallas. Strangely, I just moved here in July to be with my fiancee....we also had a long distance relationship for a while, but we actually knew each other from junior high school....it's a long, bizarre story, but it all worked out perfectly, and I hope it does for you as well! Regarding your questions about the liquids and so forth, the TSA wants all of your itty-bitty bottles (I think 3 ounces is the allotted amount per item which makes it touch to bring cleansers and moisturizers and the like) put in a clear Ziploc bag so they don't have to pull you out of security and dig through your carry-on searching for bottles of hairspray and perfume while strangers stand around and gawk at your lacy bits flying out of the bag! You'll find some airports are more strict than others (in my experience, the smaller the airport, the more aggressive the TSA agents--I had one in St. Louis try to detain me due to a lint brush--for real). But as long as there isn't anything too egregious in your bag, you won't have any problems. You can bring your flat-iron (who could live without that??) and hairdryer and anything else you might like as long as it isn't flammable or containing a blade (I accidentally threw a bartender tool/corkscrew with a foil cutting blade in my purse prior to a trip once, and they weren't too happy about it. I ended up throwing it away before being allowed to pass security. Oops.) I'm trying to think of all the issues I've encountered while traveling, so I'm sure I'll pop back up a few times with things I forgot to mention. Please keep us posted on the trip and how everything goes--feel free to PM me if you'd like!