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I have to fly for work quite a bit, unfortunately, and I think I've nearly perfected my bag of tricks. What everyone has offered is true and helpful, so I'll just add a few thoughts. If you can, try to get an exit row or bulkhead seat--way more room for stretching and not feeling closed in. Also, if you have a flexible schedule, try for an early flight...typically, those flights are much less full AND free of turbulence since the atmosphere hasn't had time to heat up yet. I get wretched motion sickness, too, and I can tell you that not eating and drinking actually makes it worse, so I usually go for a bagel or something easily manageable. My drink of choice mid-flight is tonic and lime, and it's become what I like to call "Magic Air Juice".... :-) it alleviates all kinds of icky symptoms (headache, upset stomach, etc.) It's so effective that my fiancee who is literally a world traveler has adopted the tonic/lime and abandoned his old ginger ale standby. Takeoff is actually ok--the plane tends to level off rather quickly, but landing can be off-putting, so just make sure you're distracted by something pleasant the last 20 or so minutes of the flight. Having said all of this, I have a flight to Hawaii coming up in March, and I'm so nervous about it, I could literally pass out. It's 8.5 hours nonstop from Dallas, and I have no idea how I'm going to cope for that long. I'm in First Class, so that helps a bit, but after about 4 hours, I'm pretty sure I'm going to need a hefty tranquilizer. Ugh! Anyway, feel free to let me know if you have any questions...I've pretty much encountered EVERY potsy symptom in midair, so I'll be glad to share my experiences!

Thanks for all the greetings, friends! Sue, my vision feels like it's been whitewashed....I can "see" shadows and movement, but it's all behind this blinding white light. (Yes, yes, go toward the light, Carol Ann!) Katybug! Yeah, the new guy is...well, utterly amazing. Kind of a fairy tale story as we first met in 7th grade when we were 12....some 27 years ago....whatwhat? And Chaos, I have to say.....I'm liking Big D Dallas way more than I ever did DC....better weather, sane traffic, survivable cost of living...lots of steaks... Anyway, I wake up every morning hoping for some kind of miracle vision recovery....so far? Nada. I'll keep y'all posted....hope everything is good with each of you....anything new and exciting in anyone's life? Let me rephrase....anything new, exciting and AWESOME going on?

Hi, all... Soooooo, it's been a WHILE since I've been on the forum....my life has been the epitome of topsy-turvy since this summer when I left my perfectly terrible marriage, uprooted my entire universe and moved to Dallas, TX to be with the man who's turned out to actually be the soul mate I suspected him to be. The last 3 months have been--as you might imagine--the most stressful, amazing, wonderful, harrowing days I've ever known. In the midst of all of that upheaval (which involved a LOT of travel, and you know how well we POTSY's handle that), I managed all of my symptoms and just tried to maintain whatever level of physical normalcy I could. Apparently, I didn't do as good a job as I suspected. Fast forward to 2 weeks ago: I was returning from a conference in New Orleans when I noticed that my right eye was flashing all kinds of interesting lights in dark--purple and green and gold (Mardi Gras, festivity, yes?) and that my vision was becoming kind of dim. By the time I reached home, that night, I wasn't able to see street signs or lights....or anything really. And I was plagued by a pounding, sickly, dull pain in the right side of my head which wasn't making things any better. I immediately suspected a detached retina what with the lights and "descending curtain," so I called my eye doc from back in DC (hadn't yet had time to find a slew of docs here in Dallas--sigh) who advised me to get to a retinal specialist ASAP. Long story short, I was diagnosed with optic neuritis, sent off for an emergency MRI since the condition is so closely associated with MS. Scheduled for a Visual Field test, labwork, an appt. with an neuro ophthalmologist....the MRI came back clean, the Visual Field confirmed that I can't see diddly, and the neuro scared the heck out of me because he kept exclaiming, "You can't see ANYTHING!". Yeah, I know. He's still stuck on the MS angle, so scheduled me for another MRI...this time of the spine. Because I've also got so many floating autoimmune issues, he did say that it could be idiopathic autoimmune optic neuritis, but basically? I don't really care. I just want to see again. SO! What did Dr. Doom prescribe? A 3-dose round of IV SoluMedrol via a home health nurse.*sobs* I hate drugs. HATE taking meds. I understand this is the treatment of choice and that it might hasten recovery (that's a pretty big MIGHT, by the way; studies show that the eventual outcome of ON isn't affected by whether or not you take meds....just the short-term potential resolution), but I wanted to no part of it. I did it anyway. Walked around with the port in my arm for 3 days flushed and shaky and sweating on the steroids. Dragged myself through the withdrawal (I'd declined the taper dosage as that's apparently just prolonging the misery of being on the drugs). Read all kinds of stories about how people experienced immediate relief from the SoluMedrol and could see within hours. Yeah. No. Not me. I'm now 3 days post-treatment, and all I feel is oogy from the meds and frustrated. And blind. Wondering if/when this will resolve (if I read one more medical journal that reports "spontaneous and rapid recovery at 2 weeks is typical," I'll scream something unkind) and wondering what else is coming my way with all of this autoimmune stuff. Is it actually going to be MS after all this time? Ughhhhhhh. Soooooo, I come to you, my community....anyone have any words of wisdom? Cool tips for not being disoriented from lack of vision in one eyeball? A good knock-knock joke? Anything?

Nice to hear, puppylove! Did you get to socialize a bit as well? That was always my favorite part of school!

Count me in on the sulfa allergy as well--took a dose in college for a UTI and thought I was dying for about 3 days. I'm also EXTREMELY sensitive to meds...my husband and I always joke that I'd make the worst drug addict ever. If I'm given a 30-pill prescription for something like Percocet following a dental procedure, I can only take 1/4 of a pill at a time, and even then I can only tolerate three or four doses before I have to quit taking them completely.

Hi bebe127, I'm sitting in the DC area watching it sleet at 28 degrees, so I MIGHT kick you! Ha! I do get the creepy bruised feeling from time to time--especially on my upper arms, but I have no idea what causes it. However, the fatigue and insane burning itchiness brought on by exercise? THAT is exercise urticaria...a kind of allergic reaction that is VERY common among those of us with MCAS. it can apparently become quite serious, but mine is usually limited to just the skin issues. I used to scratch the heck out of my legs after running or mountain biking--any activity that was particularly jarring, but now I just take a break and let it pass. It usually diminishes with more regular exercise.... From the Merck Manual: Exercise Uritcaria :This condition was first distinguished in 1980. People with exercise urticaria (EU) experience hives, itchiness, shortness of breath and low blood pressure five to 30 minutes after beginning exercise. Jogging is the most common exercise to cause EU, but it is not induced by a hot shower, fever, or with fretfulness. This differentiates EU from cholinergic urticaria.

That sounds FABULOUS!! Thanks to all of you for, once again, helping me better define something that's, well...basically undefinable....stupid phantom-phantom-smells!

I agree completely! If stomach issues and chemical sensitivities/reactions are indicative of Mast Cell Leukemia, then I've apparently had it for 20 years. I swear...sometimes doctors SPEAK without THINKING first...hang in there, and keep us posted!

Hi Adina, That was actually my post--his name is Dr. Mardiney, and here's his website: http://mardiney.com/ He has locations all over DC Metro area--mostly in MD. He's in practice with his sons, so you have to specify that you want "the dad" when you call! :-) I've talked about him and how amazing he is (very old school, UNBELIEVABLY knowledgeable) on the forums many times, so if you search for his name, you can find all of those previous posts. Hope this helps!

Achilles2323, My MCAS was diagnosed by an immunologist in the Washington, DC area; he ordered MULTIPLE blood tests (my final report was 4 pages long), and, along with the common tests like metabolic panels and a CBC, he ran a huge panel of IGG, IGE, IGM, IGA and other mast cell-activating factors (my IGE levels were 3 times the normal value). He also tested a biopsy I'd had done during an EGD for the presence of mast cells; finally, I got the "back scratch test" as well, and the marks stayed for nearly an hour. It seems like most of the MCAS docs are immunologists by trade, but I know some of the best in the biz are hematologists as christyd noted. Hope this helps...

OK, well...if all of you nice people don't think I'm crazy after reading what I'm about to write, I'll be shocked! And relieved! Sooooooooo....I know a lot of us have sensitivity to smells from time to time, and that can be super annoying. But, has anyone ever just FELT a particular odor without being able to actually smell it? Wait! Stick with me! Let me try to explain! I'm not experiencing phantom smells....it's more like my mind is conjuring up the memory of very specific odors (gas, burning leaves, perfume, cleaning solution, etc.) and I can imagine EXACTLY what those things smell like even though I don't actually smell them at the time. It's been happening off and on all day, and I'm also in the middle of one of those previously mentioned bouts of being hypersensitive to odors, but this is a weird one and, honestly, nearly impossible to explain....anyone? Perhaps someone who can explain it more accurately than I? Don't leave me hanging, peeps!

Thanks! POTS and I are having an off day, and I wanted to make sure I got my point across....

Dear POTS, I'm writing to share with you a difficult truth; there's no easy way to say this, so I'll be brief and to the point--NOBODY LIKES YOU. I know, I know, but it's true! Trust me. People think you're difficult and unnecessarily complicated and generally unpleasant. You know what else? You're sneaky, and nobody likes a sneak. You come in and bother people when they're minding their own business--walking, sleeping, working, playing with their kids. You overstay your welcome, and you never let anyone know how long you'll be staying--how rude! Also--nobody really knows where you come from--oh, we have our suspicions, but you're not talking, so it's up to us to figure it out. Not even doctors know where you come from, so whichever secret agency you work for is clearly superior to the FBI and CIA. AND....you confuse people and freak them out...making them think they have MS or Lupus or Lou Gehrig's or brain tumors or all of the above. So, I suppose I could compliment you on your gift for mimicry, but I'm not feeling generous at the moment, so I won't. Could you, you know, just make up your MIND and decide on ONE symptom at a time? Racing heart OR vertigo, perhaps, but not both. Your indecisiveness is SUPER unattractive. I'd REALLY like to break up with you, actually, but you're a super stalker and impossible to shake, That's why I'm writing this letter--I may be stuck with you, but I don't have to LIKE you. I think you're a big fat jerk, actually, and everyone agrees with me. So this is why you don't get invited to parties or weddings or graduations--you always manage to crash these events, but nobody wants you there! Sincerely, Mad At You In Maryland

Oh! I get the "bubble-bursting" ones too, and they're also usually in my back or under my ribs....I've always wondered what that's all about....it's a seriously creepy feeling!

My twitches travel---might start in my right thigh and then hop over to my left shoulder. And the twitches themselves are rapid--hummingbird-esque. Sometimes the twitching spots feel cold....or bruised...or both. and yes, I get them all hours of the day and night. Good times!

Hey there, katieindixie.... When these areas are cold, are they ACTUALLY cold (as in cold to the touch to you or others) or do they just FEEL cold (but are normal temperature to the touch)? Hope that makes sense....I have episodes where my legs and arms feel ice cold, but when I touch them, they're completely normal....I think it's a wonky ANS nerve thing, but if they're ACTUALLY cold, well....it's probably still some wonky ANS nerve thing....

Hi Aimes, How funny--I grappled with a supremely irritating bout of tinnitius last year for about 2 months--the sound of an approaching helicopter was the form it took, and i kind of wanted to stick a fork in my ear to make it go away! Also, do you ever get a sensation of "heaviness" in your limbs as well--not that you can't move them, but that they just feel....leaden? I'm not on any meds for the Hashimoto's as my levels are always WELL within the normal range; however, the thinking is that my symptoms worsen whenever there's inflammation and the antibodies are actively attacking the thyroid thereby reducing its function even if that damage isn't yet visibile via testing...if that makes sense. My endocrinologist is supposedly the best in the biz (Rated a Top Doc in the DC area), and he says that my test indicate that sometimes I swing between hypo and hyper in the span of just a few weeks which is typical with Hashimoto's as the thyroid struggles to balance itself. Who knows? Eventually, I assume I'll be on meds, and perhaps that'll help. Until then? Carpe Diem, I suppose!

As usual, I'm SO thankful for this forum--these issues have plagued me off and on for the better part of 14 years, and they are ANNOYING! My right side seems to be predominately affected--does anyone else seem to be one-sided with these kinds of things? In addition to the burning sesnations, I also get cold patches...I was DX Hashimoto's last year, and my antibody levels were through the roof, but my TSH, T3 and T4 always fall in the "normal" ranges. However, I'm not sure what's "normal" for others is necessarily "normal" for us, know what I mean?

I'm a twitchy mess sometimes--depends on how stressed/exhausted/overworked/frustrated I am. And it travels from my feet to my legs to my fingers to my arms....and sometimes my eyelids as well. I also have Hashimoto's Thyroiditis, though, and that can also be a factor.

OK, I know that's the silliest topic title EVER, but I couldn't think of another way to phrase it! Basically, my question is this: does anyone else seem to sweat under one arm more than the other--particularly when the sweat is a result of panic/anxiety rather than exercise/heat? I thought this was always just a "me" thing, but I was talking to a POTS-afflicted friend the other day, and she mentioned how annoying it was to always have to apply more anti-perspirant/deodorant under her right arm because the same thing happens to her. It's just too bizarre to be coincidental, right? Aren't we just a barrel of monkeys!?

Bebe127, I was just diagnosed with MCAS last year, and it took me YEARS to chase down the diagnosis after seeing every doctor in the universe including some witch doctors and a voodoo priest! Ha! Just kidding, but seriously, it can be quite a journey....what Katybug meant by involvement in other organs is that MCAS tends to affect areas of the body with a high presence of mast cells--so the stomach (GI issues), bladder (interstitial cysitis), reproductive organs (endometriosis), eyes (uveitis, iritis), skin (rosacea), etc. Those happen to be the issues I deal with personally, but I'm sure there are other examples....your best best is to find a top-notch immunologist and go through the testing process as thoroughly as possible....hope this helps!

Chaos--Tell me about it!! I actually had miinor surgery for the aforementioned issue on 1/23 (for those who are not familiar, I've been dealing with some....ahem...unpleasant issues related to my IBS)...so the day I had to go to the eye doc was the first day I was able to drive following surgery, I was hoping to take a nice drive to the park and maybe walk around a bit...but naaaaaaah, much more fun to have an emergency eye exam and receive a crappy diagnosis with potentially more to come. I've gotta be honest--I'm pretty much at the end of my rope here patience-wise...I need a break, universe.....you hear me out there?? Helllllllooooo.....sigh.

Chaos--Funny that you should mention the HLA-B27...I'm off to the rheumatologist next week to be tested for that very thing. It won't suprise me an ounce if I've got it and ankylosing spondilitis as well. And the bad genes are such a thing, aren't they?? My mother--a hematologist--has been trying to figure out my autoimmune link for a long time--many of my grandmother's siblings/nieces had autoimmune issues, but they didn't pop up again in the family until all of my weirdness started. My mother likes to say that she may have passed on the bad genes, but my father probably passed on the "On Switch" gene to trigger them (they've been divorced for 30 years and loathe each other, so there's that!) Naomi--I'm SO happy to hear that you're going to see an eye doc for your issues...it's weird how this forum works sometimes, isn't it? Good luck, and keep us posted!!

I've got anterior uveitis--which basically means that the arteries in both eyes are highly inflamed; it's an odd little disorder that's seen quite frequently in MCAS patients, actually. It's also related to other autoimmune conditions like ankylosing spondilitis--so, yay for me, I'll be headed to a rheumatologist next week to be tested to for the HLA-B27...thing....antibody? Gene? I can't remember right this second. Anyway, it's also connected to Hashimoto's Thyroiditis which I have as well, but for which I don't take meds because my TSH, T4 and T3 levels have always been normal. I'm on 4 doses of PredForte (prednisone drops) until I see the doc again next week, so we'll see how it goes... (See? Get it? Good pun! OK, not really ) Sooooo, I'm trying to look at this event as yet another piece of my overall puzzle instead of the enormous pain in the bum that it really is...

Hi, all... If anyone has been following my posts from the past couple days, you know I've been dealing with blurry vision on/off for the past week-ish. I, like so many of us here, blew it off at first and assumed it was caused by low BP or meds or TMJ or just a wacky system glitch. I didn't even consider going to the doc until I became concerned that it might be optic neuritis--a hallmark of MS. Even then, I didn't do anything about it and just assumed it would wane after a while like so many of our symptoms seem to do. I woke up yesterday to what I thought was a room full of smoke--turns out, my vision had gotten much, much worse overnight. I FINALLY hightailed it to my ophthalmologist and was diagnosed with bilateral uveitis. I was yammering to the doc the whole time about "I'm sure it's nothing--I'm really paranoid, etc., etc." because I'm so used to doctors shrugging their shoulders and finding nothing conclusive. He finally stopped me and said "This is serious. Left untreated, this causes PERMANENT blindness. This is NOT nothing. It's definitely something. It's good that you came in." That was a HUUUUGE wake-up call for me--I blow things off all the time because I figure they're just dysautonomia shenanigans--guess what? Sometimes, something just ain't right! I came home and was all spooked from the day and burst into tears while telling my husband...he just kept patting my back and saying, "I'm confused....why are you crying? You're crying because you're NOT going to go blind?" It's just too hard to describe how often I feel resigned to feeling awful--so resigned that I ignore something potentially serious... Just a reminder--we have to stay on top of everything all the time...I'm happy my peepers were spared this time...