MightyMouse

I do fine with anesthesia. I actually feel more groggy and POTsy for days after twighlight, whereas with general, I'm good within a few hours and usually able to get out of bed (if I'm allowed... er, and sometimes even when I wasn't allowed; I hate using a bedpan!). NIna

My mom and my two sisters all share the same genetic variation which is a dominant gene (50/50 shot each pregnancy). I am the ONLY one with full expression of the gene. Everyone else has minor problems.

You may want to talk to your doctor/pharmacist to see if there is a 24 hour allergy otc med to substitute. You're essentially on the same protocol they put me on when I'd have anaphylactic reactions and hives. Mine was 10 mg zyrtec 150 mg zantac 2x day 10 mg singulair 50 mg or more of benedryl at pm, and 25 other times of day as needed, but can also take more than 50 if I'm still covered in hives or having asthma problems--basically, my allergist told me to keep taking until I just started feeling a little sleepy, as that's the sign my body had used all it needed. This concoction kept me out of the ER more times than I can count. I hope you find a mixture that works for you. Also, I found that some allergy meds took me a few days, but I eventually got over the drowsy dizzy stuff and didn't have any other side effects. I had a problem with a few of the generic zyrtec brands--and a few others are fine. For some reason, I can tolerate the Walgreens generic, but I can't tolerate whatever maker does the generic from my local grocery, no the one for Target. Weird.

these are close to what I have, but I didn't pay nearly as much as the gloves on REI --although I have bought plenty of other things from them. http://www.rei.com/search?search=goretex+gloves&origin=Google&scv_page_size=109&seq=1&hist=search%2Cgoretex+gloves If I had to do it again, I'd get the mittens--these are close to what I got, not exactly though. http://www.landsend.com/ix/index.html?search=gore+tex+gloves&store=le&action=newSearch

I love winter too... yes, my hands often turn blue, but my body, overall, enjoys the cold. As for gloves--the only thing I've found to help were ones that are line with polar fleece and covered with goretex.... I got them from Lands End a few years ago. I heat them with my hairdryer inside before I go out. Other than that, my extremities often do turn blue to purple depending on the temp and how long I'm exposed to low temps. Nina

Folks, Until I'm graduated from my university program, I have access to all full text articles you can imagine. PM me with your email address letting me know. I only have access for as long as I'm a student there (the university has a well known medical school and has incredible resources)--I don't have even CLOSE to the access at the university I teach for...

When I have bad surge, I get a fast heart rate (feels like I'm running a sprint but I'm not moving or doing anything strenuous), I start sweating, feel dizzy, sick to my stomach, and I often get a weird metallic taste in my mouth when the surge is really bad. I do get the shakes too afterward. When I've had epinephrine for allergic reactions, it feels exactly the same as a surge. Nina

Your bp problems sound a lot like mine. I have both high and low bp--when I saw Dr. Grubb he put me on a low dose of an SSRI, which seems to have made the highest of the high bp not so bad, and also helped keep the lowest of the low not quite so low. A few years later, we ended up adding a low dose of a bp medicine, which I mostly need during the seasons that aren't too hot (temps above 75 each day). I will also say that I did really well on florinef for several years. I went off of it for some testing and then my body hyper reacted to it and I was never able take it again. We even tried a miniscule dose, where I took less than a 1/4 of a .1mg tablet and my bp shot up too high all day long. The stockings really help me on low bp days and when I'm having pooling problems. Hope they help you! Finding the right treatment for you may be a trial and error thing.

I actually have read a few articles in the past few weeks that stated the FDA is considering the extended trial offers from the cardiology group and Mayo. We'll see what happens, but at this point, Shire has no financial reason to continue--the medication already went generic.

The Philadelphia Inquirer had a great article today on Midodrine, the FDA and Shire Pharmaceuticals

NDRF used to sponsor support groups, and they also partnered with Shire Pharamceuticals and Medtronic (pacemaker company) to put on 2 international conferences. Each was held in Washington DC. Michelle Sawicki and I attended the last one in 2002. Over the years we have discussed the idea of a convention many times, however, our organization, as it stands, does not have the financial or staff resources needed to do this at present. I used to work for a small nonprofit that put on an anual conference for 5 to 6000 people each day for 3 days--it took months of planning with several full time staff whose only jobs were to set up guest speakers, specialists, doctors, discussions and panels, agendas, etc. I have worked on a virtual platform too--I've used BlackBoard at the university level, as well as another conferencing software called Eluminate in my professional life. People participating gave feedback that they felt that the virtual systems were convenient but very impersonal and limited by the end user's internet connection speed. I'm fortunate to have access to a trunk line at work (=very fast) and fiber optic at home, it works great for me...but for folks on DSL, satellite or dial up, it's tough. I've also been a participant in skype based conferencing...again limited by the end user's technical savvy. Something that works better is to have a live conference, but also record and podcast/youtube selected sessions so that those who cannot travel and/or cannot financial pull off paying for attendance can download at their leisure. Nina

In most cases, if you're still in the 90 day period, they can fire without giving any cause. As others have said, it might help to try working on getting whatever you need to get together to apply for disability so that you can eventually ensure that you have some source of income and medical insurance coverage. I know others here have posted in the past about free resources in working through the social security, disability and medical assistance maze. If you have the resources, there are lawyers who specialize in helping people get their benefits...for a fee, of course.

I can't get perms or permanent hair color. Makes me feel so woozy and sick the few times I had it done at the salon. I've had a similar problem getting my nails done...I just think I'm sensitive to the chemicals. I occasionally use a wash in non permanent hair color--I've tried a few different brands and haven't had any problems yet. I probably use it once or twice a year; most of the time, I just deal with the greys.

The TTT is considered one of the definitive tests; it can provide some really useful information to confirm or rule out a diagnosis of POTS/NCS, etc, and it can also help in planning of treatment. If you decide to go through with the exam, just be prepared to feel really awful afterward. For me, it was no worse than a really bad POTSy day. It was also super tough for me to be without my morning cup of coffee first thing in the morning, which helps get my bp up. Bless my friend who took me for the test and had a HUGE cup of coffee waiting for me when I was done. As my cardio said, I "failed spectacularly" on the test--lost my blood pressure 2x and they stopped the test before I fully fainted b/c my diastolic bp was not detectable and my heart rate started soaring. My test only lasted 15 minutes. However, I have a friend whose test was more than an hour--and they figured out she did NOT have dysautonomia; it helped them realize it was hormones --she had a pitiutary tumor. Personally, I'd do the test again if my doctor asked, mostly to see if I'm doing about the same, any better or any worse. Of all the tests I've had done that was one of my easier ones! But, I'm with Ernie...I'd much rather ride the real roller coaster!!! Ernie, see you at the amusement park? Cedar Point is great for coaster fans!!

I don't know what my level is, all I know it's very low and I have to take Rx vitamin D--and I DO get sunshine and eat lots of dairy. I'm told, though, that low vitamin D is common with those who have Celiac because of poor absorption. Also, before i was eating gluten free, I avoided dairy b/c it made me sicker.

or you can go to celiac.org and look at the safe and unsafe foods lists. Gluten comes from anything containing: Wheat Barley Rye and also includes wheat relatives like spelt. Big no-no's are things like beer, malt, almost all breads unless they specifically state GLUTEN FREE or better yet, CERTIFIED GLUTEN FREE (which is a higher standard and is best for those true celiac folks who can't have ANY cross contamination from dusts given off by wheat, rye or barley that may be processed by the same facility). Hidden gluten is in all sorts of things like soy sauce, Twizzlers candy and other gummy candies, cereals you'd think would be g/f but aren't, like Cheerios and Corn Flakes. Until recently, Rice, corn an oat Chex cereal was flavored with barley malt (which is what's in cheerios and corn flakes)--Chex recently eliminated it from many of their products. And there are other things you'd be surprised are gluten free, like nearly all cheetos and fritos products, captain crunch cereals. My favorite GF pasta remains Tinkyada because, to me, it tastes the most like the real thing--but word of caution that it will get mushy when reheated so i only make enough for immediate use. And, Mr. Ritts breads are still the best and closest to the real deal I've ever had. Sadly, they no longer have their retail outlet where you could buy their cakes--tasted so true to what a cake should be that my relatives had no idea they were g/f ...and these were the folks who didn't eat anything unusual or ethnic...even Chinese food was considered strange by them... and those cakes NEVER had leftovers. Pardon me while I lament because I can't recreate the taste myself. For GF mac & cheese from the box, I got Annie's White Cheddar, but i've had the regular yellow stuff too. Both satisfy my need for junk food. Caveat: I don't work for any of these companies and have no stake whatsoever in whether you buy them or like them. Just giving you my personal opinion after trying nearly everything available.

I also use Culturelle; my GI doc suggested it b/c he knew it was g/f

POTS is an unlikely cause. A more likely cause is some sort of metabolic problem as others have pointed out about--thyroid problems, vitamin and/or mineral deficiencies or overages.

Hi Steven, you may need to tweak the dose, with help from your doc. Midodrine will stay effective for about 4 hours per dose (at least that's the average time most folks here have reported, as well as my own personal experience) -- so 5x a day might be too often--you shouldn't take any Midodrine within a few hours of your bed time b/c it can cause your bp to stay too high while you're laying down. As for the dose, I sometimes needed as little as 2.5 mg every 4 hours to as much as 12.5... my doc and I worked together to allow me to adjust my dose based on symptoms. Since your male, you may not have as big a variation in dosing; during my period and just before, my dosing varied tremendously from the remainder of the month--which was usually 7.5 mg every 4hrs. Be prepared that when Midodrine wears off, you may experience a very sudden onset of symptoms. I used to describe it as dropping off of a cliff--I'd be doing awesome and then BOOM. On a good note, the drug is picked up in your system quickly, so it'll only be 20 minutes or so after taking it before you start to feel better. Hair standing on end always was my cue: meds kicking in now. Good luck with it--some people respond well and others don't so it's really a try it and see kind of thing

I follow paleo as well--goes well with a g/f diet. I try to follow Mark Sisson's major suggestions and find him to be pretty balanced. I have his feed on my droid phone, and I get his Mark's Daily Apple emails; I also have his first book and cook book. White potato= NOT paleo--Sweet potato and yam are okay but really only if you're not in a weight loss mode and more of a maintain mode. I learned recently that parsnips are high in carbs, and probably why I was gaining again b/c I was eating multiple times a week and probably going over my carb limit--I try to stick to 10grams or less of carbs per meal if I'm in a loss mode--which I am now b/c I clearly ate too many carbs in the past 2 mos--even if good ones. The other thing I did was indulge in some higher carb foods over the past few weeks at parties and little by little I had the scale creeping upward. Back on track now. I find that eating nuts like cashews, almonds and pecan make for nice breakfast with my morning coffee, which I alternate with eggs. I am not "orthodox" paleo, in that I do eat cheese and other dairy. I try to go for aged/fermented cheeses as opposed to things like cream cheese or sour cream. Even so, I get cravings for hot cocoa and/or chocolate milk, so i do indulge, using stevia or agave to sweeten. Up until my most recent carb fest, I'd maintained my weight loss for more than a year--I now have 8 to 10 to drop which I hope to do by the turn of New Year--taking it slow and steady. I also am fortunate to have about a half dozen friends that I work with and see often who are going fully paleo, so I can get lots of ideas and support from them. We trade recipes by email all the time. My current favorite is pizza, with a crust make mostly from almond meal/almond flour. One of my friends lost more than 70 lbs and has kept it off for 2 years. All of us on paleo have found that we rarely get sick--I'm sick now with a sinus infection and bronchitis and I swear it's from all the dietary cheating I did in the past few weeks (off paleo and NOT gluten free--I'm a sucker for a really good cookie). Threw my body completely out of whack and now I'm trying to get it back into the groove again. As someone who has been g/f for a very long time, I will say that it hasn't really done anything for my dysautonomia --but there are others here for whom this type of diet has alleviated some symptoms. Not a cure, just one step better perhaps. Nina

Only helps me b/c I have Celiac/Sprue. Personally, I think that it's so individual... you can try it and see, but if it doesn't help, then don't bother because it's so restrictive and expensive.

Kate, my allergy development seems to go in waves. I have months or even years between runs of time where nearly anything I put in my mouth or am given IV sets off a terrible reaction--and then periods of calm between; I was able to retry some drugs, with them now causing hives instead of a full blown anaphylaxis--so it does expand some of my options as long as I can also take benedryl and steroids at the same time. Anything I reacted to via IV has never been able to be safely used again. Nina

I have a long, long list of medication allergies that I developed more than 10 years ago. Most of mine are to antibiotics. I have two I can safely take, but one has a black box warning by the FDA and is only for last resort (Ketek). I know one of our other members, Michele, hasn't chimed in, but she definitely has really struggled with crazy allergies too. (I think her screen name here was mkoven). Nina

as others here have said, it's important for you to bring anything that can document your formal diagnoses.

In my late 40's now...and all I can say is Yes, for me, but my struggles are physically, not emotionally... but I also think it may depend on the type of POTS or dysautonomia that you have as much as age. I've never tasted "normalcy" b/c my type is genetic so I've had this my entire life.