Lukkychrm42

Actually, Heather corrected the page for POTS, but the page for OI (which has a link to the POTS page as how chronic OI often "manifests itself") still calls it the Wiggles Disease. To me it seems silly, I guess, because I might think of little kids who can't sit still. While it does seem to trivialize it a bit, there are a lot of other diseases out there well-known because of a celebrity, and even by name (Lou Gehrig's Disease..). I definitely appreciate the press it's getting, but I seriously doubt that Dr Grubb or Robertson or Stewart or any of those will start telling their patients they have the Wiggles. I guess there are enough people out there fascinated by celebrities of any type that a medical journal might never sell in a grocery store, but plenty of news and celeb news-based publications fly off the shelves, so I guess I would prefer those to nothing.

I guess I'm lucky not to have too many official parties during the season... last year my boyfriend's work party was a sit-down dinner, so that was fine. (And this year I'm in the States!) Other than that things are pretty informal. (Actually, my parents have a huge open house every year, and the only time I was in town for it was when I was 18, but even then, there's always somewhere to sit!) One of my biggest worries would be the standing around. If it were that kind of party, I would bring my seat cane, just to make sure there'd be somewhere to sit. I don't mind at all sitting on the floor, but if it's formal that might not work, especially if not everyone knows what's up. As for the exhaustion, there are times whenI'm willing to do something that I know will make things worse for the next few days. If it's a party with lots of really great friends that I know will be incredibly fun, I'll go... or if it were something important for "networking" or for business connections, it might be a good idea to try... but either of those situations would find me needing to leave when I need. I won't stay until 3 am just because there are still people there. I agree with what others have said.. drinking water all evening, either nixxing or limiting the alcoholic beverages, stocking up on salt, and making sure you can take it easy the next day. Good luck!!

Hi!! I hope you had a happy birthday, and I'm thinking of you. I hope you are feeling better soon, and that you can get out of Club Med soon. Lots of love and hugs!! Megan

That's definitely a typical characterization, but also more likely for the younger ones, and particularly those who get dysaut. in adolescence. I have always had a very muscular build, thanks to my genes, and even when I was a size 2 I weighed about 125 lbs. That was before the steroids.

Melissa, I hope you're feeling better soon. We miss you here! Love and hugs, Megan

it seems from a distance to be mostly a reddish purple, but if you look closely, it turns out there's really more of a collection of blue, purple, red, green, and yellow, and some very pale bits, too. Very blotchy!!

Wow that's great! Both for nonhelpful doctors and maybe just in case for new ones, too!!

These are some awesome ideas. Thanks so much, everyone!! My mom is from Ohio, and always makes buckeyes... must be an Ohio thing! Hehe. I still don't know exactly, but this definitely gives some starting points! Thanks!!!

I'm glad you're back, I remember you were going to the geneticist... Well, I am glad you've got people who are willing to work with you, and I hope they can figure out what's going on and what can be done about it. I can't believe you got stalked by a nurse! Yikes! I'll be sending lots of hugs your way.

This is just a kind of funny aside, but as to using the electric carts in grocery stores... I very rarely have problems, and people are usually fairly friendly and at least somewhat helpful. I live in Boulder which is similar to Berkeley, CA, if you know what I mean, and we don't have a large selection of grocery stores. I shop at the vegetarian co-op when I can, but really can't afford organic all the time. (esp. fruits and veg) I did go to Whole Foods once about a month ago, and apart from things being very close together and difficult to maneuver in the cart, the people there were the rudest I've experienced... and I used to shop there all the time and never noticed until I was in the cart. It was about 7 pm on a Friday and pretty busy. I just thought it was interesting that it seemed the customers were so rude (cutting in front, blocking everything, never letting me turn out of an aisle, etc.)... I didn't know if any of you have had that experience specifically at a Whole Foods? LOL

Yeah, I think something similar has happened to me only once... but I'd think that because of the research and doctors in certain areas (Toledo!!!) that some communities will be more familiar than others... people going to where the doctors are, and then those lucky enough to live nearby, those areas will have a higher concentration of DIAGNOSED people.

People tend to be like that around people in wheelchairs, usually because for some reason it makes them feel uncomfortable... they don't want to be rude by staring (the ones who don't, anyway), but maybe don't want to give in to their curiosity and make you feel uncomfortable by asking personal questions that are none of their business. Maybe someday people will find people in wheelchairs to be normal people, too.

Hi, I take my BB in the evening, a couple of hours before bed. If I do something before bed or am stressed or something, sometimes my HR just doesn't want to slow down, but usually it's ok if I take another 5 mg, because otherwise not being able to sleep makes me more stressed out and therefore more difficult to get the HR down. I try to stay pretty quiet after taking the BB, but it doesn't always help... especially for example when my roommates have a bunch of people over all of a sudden at 11 pm (don't get me started!!) and then the music and drunk shouting starts. I get 10 mg pills of betaxolol and am supposed to take a 5 mg dose if my resting HR is tooo low, but otherwise 10 mg. I try to do with 5. I don't know if the scheduled time to take it at 8 or 9 pm is how it was designed, or just how my cardiologist recommends it, but it is definitely what has worked best for me, especially since in the AM it's already in your system and don't have to wait for it to kick in like your other AM meds. On a non pharmaceutical note, making sure to avoid stimulants in the pm is also helpful. I can tolerate caffeine if my HR is generally under control, and also find it helpful to raise the BP, so I have a jolt in the morning, and sometimes in the afternoon to help me study, but i almost never consume any after 6 pm. (And then only if I'm expecting to go out to a movie or something and want to stay awake.) Also, things like suspenseful films or shows, and work-related things might add to stress. Good luck, and I hope you can get to sleep!

Hurray! You rock!! Seriously, congratulations!!!! You are amazing.

Hi, Thanks for clarifying that Nina. In addition to dysaut, she had small and large fiber polyneuropathy, and she was diagnosed with the masto less than a year ago. She became allergic to the plastic in her feeding tube almost a year ago, and allergic to all the medicines they tried to control the masto and everything else with. She was very sick for a long time, and she got a new oncologist for the masto in October, but they were unsuccessful in finding medications that could help. Additionally, she was unable to get adequate nutrition, and it got to the point that she was safer at home than in the hospital. As you all can see, she was an incredible person, and always optimistic and inspiring. She was truly beautiful inside and out.

Hi- This is the first year in recent history that I've been super low on funds for Christmas presents. I know many of you are also unable to work, and I was wondering what sort of things you've thought of to give family and friends? I'm not very creative, so things to make by hand might better fall under the food category. Other than that, I haven't really thought of anything special. If I had the money, I'd like to do something really special for my parents, sister, brother, and fianc?. My parents are taking us on a catamaran cruise over New Year to the Caribbean, and that's our official present from them, and my sister is pregnant but giving the baby up for adoption, so it will be a hard year for her. I'm afraid my fianc? might be going the jewelry route again- he knows I'm not rolling in dough, but I still feel bad. Any ideas?? Thanks a ton!!!

Hi everybody, I just wanted to let you know that an amazing young lady with post-viral dysautonomia and systemic mastocytosis passed away last Tuesday. She was on this board as CaitlinRose, but she didn't post very long as she got quite ill with the masto. I knew her through another dysaut. group, and I'm still sort of digesting the news myself. I'm still sending lots of love and hugs up to Connecticut to her family.

What a cutie!!! Very handsome indeed! What kind of cat is he??

Just so you know, if you use products that bleach your teeth with peroxide or something stronger, it can damage the enamel, thus making your teeth stain more easily, and making you more dependent on whitening products. I like my Toms of Maine toothpaste that contains silica. Other commercial whitening toothpastes contain this as well. (FX Colgate Total whitening has fluoride to prevent cavities, triclosan to fight gingevitis, and silica for whitening.)

I don't know anything about this diet specifically, but there are tons of miracle cure-all diets out there... While I certainly believe that some diets are better than others, I would definitely want to look into the nutritional science they use to determine what they eat, and that it's not just based on the bible. I theory I think there is definitely a large advantage to diets that are based on fruits, veggies, whole grains, and legumes, but even within that parameter, there are tons of ways to go! That being said, what you eat and handle well may depend on your degApestive capabilities... you know how lots of us have digestive problems, so some foods may be less helpful than others. For example, I don't do well eating raw vegetables. I definitely digest them easier if they're cooked. I also don't handle lots of fat well, so I have to be careful with oils and nuts. Apart from that, as the others have said, it's always a good idea to check with your doctor before embarking on any new diets... all other things aside, you want to make sure you're getting a balanced diet... even if the bible's authority demands it. (OK sorry!) There are constant crazes in natural foods... this summer it was goji berries, and now it's kombucha... and yes these things are definitely great for you, in the appropriate quantities, but that doesn't mean they're going to guarantee healing.

Aww how cute is that?!

Hi! Yeah I get the seasick feeling too. As far as feeling "clumsy," that is worse in the Am or after exerting myself physically. When i lay in bed at night, though, the world seems to be rocking back and forth. It's really annoying!!

Hmm I don't remember having specific responses to a shampoo or haircut itself, but I don't really have much in the way of chemical sensitivities. Other than that, salons often smell really strongly of various chemicals, and I would think that the smell itself could cause some pretty strong reactions. Places that do nails are the worst for me- I can't sit in their without getting nauseous. Yuck! Sorry!!

Hi, I just wanted to say that I'm really sorry, and that I realize it must be very difficult. Sending you lots of hugs!!!!!!

I've taken a low dose before and haven't noticed much. For one thing, the formulation and brand seems to correspond to its benefit, and those brands that are actually better incidentally are rather expensive. I'd say that if your cardiologist gives you the green light, it might be worth a shot- not necessarily to help with your POTS symptoms themselves, but for overall heart health and energy levels, maybe? I dunno! Let us know how you do with it!