UnicornIsis

I voted younger. I have NCS, POTS secondary, and EDS Type III. Never done genetic testing, but my POTS doc said yeah I have it. And considering all the stuff I and my whole family can do, I'm pretty sure. I've always been told I look younger than I am. I'm 23 and get carded for R-rated movies when I'm standing beside my husband who is 26 and looks about that age, myabe a bit younger. Same thing for the liquor store. I don't drink but we like to get the champagne(sp?) we had at our Wedding once in a while or to celebrate something and I'll take a sip or two and the rest is his or usually some gets thrown out. They'll card me standing beside him and not him. Sometimes its soooo frustrating. I mean if I was under 18 do you really think I'd be married? Come on!! You can see the rings on my finger, especially when they ask to see the ID and I hand it to them. I don't mind it so much inside the theater because the one down here has a lot of problems with the teenage curfew and the kids trying to stay out later. The cops are just doing their job. But it is annoying sometimes. Other times its nice, but for some reason I don't seem to notice those times as much! My Mom, whose side the EDS is on, also looks younger than she is. Even going grey for the last 10 years she still looks younger than most people her age. People don't believe she's as old as she really is. Good topic. UnicornIsis

I'm looking for a Dysautonomia doctor in my area or state even. I was seeing Dr. Abdallah when I was in Virginia. But now that I've moved to Florida I don't know of anyone. I'm in NorthEast Flroida, Jacksonville area. Does anyone know of doctors in Florida or even lower Georgia? I'm with TriCare now, the military health insruance, so I may have a problem getting to someone, but even if the insurance won't approve it, I'll still go if they're a POTS or Dysautonomia doc. I was referred to a doc here in JAX at one of the downtown hospitals and he said he'd seen NCS, but not a chronic form before and not POTS. I have NCS, primary and POTS secondary. That was fine, I would see him every 6 months and consult with Doc A over the phone when I had problems. But now he's moved back to North Carolina where he's from 20 some years ago according to a letter I got in the mail. I'm supposed to call the office and they'll help me reschedule with another doctor. Only thing with that is, this doc said there was nobody else in the practice who'd seen it etiher. So I'm hoping y'all know of a doc that specializes in Dysautonima. Thanks, UnicornIsis

I know how you feel too. I'm feeling a bit the same right now myself. I was in my second year of college when I got sick. I was able to finish up the semester at home, all except for one class. I've taken three or four community college classes since then, one a semester except the last one when I took one online class plus the regular. All of my classes were either online or only one night a week so I was able to do them when I was feeling very good. But even the last semester when it was the online one AND the one night a week on campus one it was almost too much for me. It really wore me out and I was sooo glad when summer came and I had a break. I'm married now and my husband is in the Navy and the base he's stationed at is several states away from my family so I'm all alone down here and nothing to do. I know if I'm able to finish my degree it will take a very long time. I've felt kinda discouraged lately. And yes like everyone else said it IS an accomplishment just to get out of bed in the morning for us. But I know what you mean about looking at people you grew up with and they've done so much more, all the things you thought you would have done by now or at least started. Maybe we'll both do something together. I've decided recently that my next accomplishment will be taking a GREAT vacation. I want to go to Europe. And I figure if I ever get healthy enough to do it that will be an accomplishment. I know this doesn't HELP much, but I DO know how you feel, exactly how you feel. UnicornIsis

CONGRATULATIONS!!!!!!!!!!!!! I'm so proud of you!!!!!!!!!!!!!! It lets me know that I'll be able to finish one day too. UnicornIsis

Sometimes I think that if I ever got a magic wish I WOULD NOT wish for a cure for NCS and POTS. I WOULD WISH for a machine that when you point it at someone makes them feel like you do and then makes them feel like your absolute WORST DAY EVER and then back to how you feel now, so they would apperciate how you feel and how today is actually MUCH BETTER than you could be feeling. Would you like to pre-order my NCS and POTS dream machine for when it finally comes in? Cost to you: NO charge to people with NCS and POTS and other Dysautonomias. Look of dawning and understanding on their faces: PRICELESS!!!! Hope this at least gives you a smile! UnicornIsis

THAT'S GREAT!!!!!!!!!!!!!!!!!! After reading the first part of your post I was going to reccomend you get another cardio, but you already did it and I'm so happy for you!!!! Please let me know how it goes and if you're able to make it to UVA after all. UnicornIsis

I DO!! I DO!! My docs all say its my Ehlers-Danlos Syndrome Type III.

Susie, Hey. I STILL haven't gotten to the movement disorder specialist down here. The day I was supposed to go we ended up at a funeral for my husband's surrogate father in Miami. So it was resecheduled for a month later. And I just got called yesterday and told the doc won't be in the office that day and they rescheduled it almost ANOTHER month later. I called them back and explained how long I've been waiting and that lady got me about 2 weeks sooner AND in the afternoon instead of early morning. So when I FINALLY FIND OUT I will let you know what they say. Oh, something you might want to try. I started with a neuro in VA right before the Wedding and he said since I almost certainly will never have trouble during one of my appointments this is what to do: When something happens, grab a video camera and start filming me until it stops or a few minutes after. And do this several times. Then when I have the appointments bring in the tapes and he'll be much more able to tell em what's going on. Maybe you can try this so when you do go to a doc you'll already be at the stage of your second appointment maybe. Hope this all helps and you get some answers. UnicornIsis

THAT'S GREAT!!!!!!!!!!!!!! Okay what's this doc's name so we can all rush and see her? Seriously though, that's great and she sounds WONDERFUL!!!! UnicornIsis

Congrats!!!! Let warn you. If you're as sensitive to gravity and elevation as I am, you'll need someone else to drive you. As you go between Richmond and Charlottesville, the Fall Line hits, which means the elevation starts getting higher between the two cities and you'll get more symptomatic the closer to Charlottesville you get. And the town isn't huge but it can be confusing. I reccomend getting a map from somewhere like AAA or somewhere else. The reason is, mapquest and a lot of the online places for some reason think some of the college foot paths are actually roads and try to tell you to drive down them, when you SOOO can't. Also, you might want to call the hospital main office and ask about the closest burger joints and restaurants if you're not staying over night. +=--]\ Sorry that was the cat. She's hyper. Anyway, Charlottesville is a nice little town. Also, most of the exits on 64 between Richmond and Charlottesville have at least one fast food place. It doesn't look like there'd be anything at most of the exits but there is. Also Zion Crossroads exit has more than one fast food place and several gass places and lots of open space walk around and feel safe in. Hope all this helps. UnicornIsis

I'm from west of Richmond originally. Don't bother with UVA. Their lab doesn't particulary like the Dysautonomia diagnosis from what I've been told. My original cardio wanted to refer me there after my 1st TTT. She STILL refuses to believe that NCS and POTS exist. Needless to say, I didn't see her for long. I finally got to Hopkins and saw a Dr. Hugh Calkins. He said NMH/NCS, but that his study was over and he wouldn't treat me. I had to find my own doctor. I found Dr. Hasan Abdallah in Manassas. I don't know, you might want to try UVA's lab after all. That was in 2003 that I dealt with them. They may have changed since then. I wish I could tell you someone in the area to see, but Dr. Abdallah was the closest I found that knew anything about it. And he's a pediatric cardio. But maybe if you give him a call he can reccomend someone. Here's the website www.childrenheartinstitute.org That should give you the phone number for his office. Please let me know if you need any more info for the area, but I'm not sure how much help I'll be. UnicornIsis

I pm'd you info already, but I wanted to add something. It may be that they're talking about Familial Dysautonomia. Which is something very different. Please call Debbie at DYNA Kids. I really really think she will be able to help you, if nothing else she will be able to introduce you and your daughter to others like her. I hope you find some help for her. UnicornIsis

Thanks y'all, and the lady who pm'd me. I talked to Mama about it again tonight. She's ordered the book I'm reading and is waiting to get it in. And she's going to call Dr. Abdallah for herself, instead of for me for once. I told her to look up this post, as she's never been to the site before. Again, thanks. UnicornIsis

Hey y'all, I've been talking with my mother lately. Her mother died before she hit menopause so we have nothing to judge her symptoms and experiences by and she's the oldest woman in the family at the moment. She's been going through menopause since I was a freshman in high school at least, about 10 years now. She still gets hot flashes and night sweats badly, severe anxiety about memebers of the family getting hurt or dying and SEVERE mood swings. She wasn't like that before the menopause, the anxiety was the same, but the mood swings weren't there. She talked to Dr. Abdallah several times when I saw him and he said she had a mild case of dysautonomia and the menopause is what triggered it. What I'm wondering is, is there anyone else here, who has it since menopause or developed it with/after menopause, do any of you have mood swings? My father says there are days he walks into the house says one word and she bites his head off. And there are other days when she's just fine. It seems to go between the extremes sometimes. She takes Black Cohosh -- an herb and we can tell the days she doesn't take it becasue her mood swings are MUCH WORSE. I've been reading the "Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide" and the Anxiety described in there is EXACTLY my mom. So far it hasn't described mood swings, but I'm only part way into it. I guess I'm hoping the mood swings she has are part of Dysautonomia and not something else. Thanks for reading. UnicornIsis

Let me say first off, there is NO OFFENSE INTENDED TO ANYONE. This whole thing started as a joke. My husband is in the Navy. One weekend during basic training at Great Lakes in Chicago during February they got liberty for a weekend. The drill instructor asked them each what they were going to do before he let them all go. Since it was the middle of winter the options were a bit more limited. Most said things like go to the movies, go to one of the MANY local strip bars, etc. By the end of it they were each saying more and more outlandish things and building off of each other. When they got to my husband (he was single then) he said I'm going to find a midget in a tutu. The drill instructor actually started laughing then and walked away. So that is the running joke between us and his friends at work: "midget in a tutu" is the answer for almost anything you could possibly think of. At the moment I'm trying to get a definate diagnosis for what looks like seizures but isn't. We were talking about it on the way home from getting groceries the other day and I said just once I'd like to have a diagnosis and NOT know what it is, instead other way around knowing what I have and NOT have a diagnosis. He popped out with "so you have Midget-In-Tutu Syndrome"? And I said YES!!! I have Midget-In-Tutu Syndrome. I don't know what it is, but I have a diagnosis!! I was tried of having things and not having a diagnosis. So now I have a diagnosis, and don't know what I have! Sorry if this sounds confusing. It makes sense in my head anyway! So who else has a Midget-In-Tutu Syndrome?

I get the same problem. They give me the leads for infants. But that only helps a little, it only makes the irritated area smaller. DON'T USE ALCOHAL to try to get it off. That just makes me worse and irritates the already irritated areas. I just had to move each lead around a little each time I switched them when I had one for a month one time. And I downed LOTS of benedryl pills. Creams and stuff for the skin didn't have much of an effect. I would put neosporan or A+D Ointment on the skin at night sometimes to help it heal some. Hope this helps.

WOW!!! 25 YEARS AND HAPPY!!! CONGRATULATIONS!!!!! on getting re-married!!!!!!!!!!!!!! Dysautonomia has a way of trying to steal the attention from us. I'm GLAD you didn't let it steal your WONDERFUL and SPECIAL DAY!!!

Belinda's post has got me wondering ... Is it worth getting tested to find out if I have low blood volume? Will it help any if I do have it, when I go into the ER or anything like that? When ever I end up at the ER they take as much blood as they possibly can and won't listen to me that most of the time all I need is fluids, until I'm about ready to pass out. What would it really mean if I do have low blood volume, other than that I just don't have quite enough blood? Thanks y'all.

I don't know if the blood actually pools there, but after I eat I feel like all the blood is draining to my stomach. The more I eat, the more it feels like all the blood is being sucked there. I've been eating 5 or 6 small meals a day, some only amount to snacks really, but I don't get as hungry between times. I also only eat when I'm hungry, not when "its time to eat". I've noticed over the last several months that by doing this I don't feel that blood pooling in the stomach feeling much anymore. At least no where near as badly, and I've gotten used to the small feeling now, and it doesn't give me anywhere near as much trouble or irritation now. Also, if we're traveling and I can't eat the way I normally do, I get taht blood pooling in the stomach feelinlg again VERY badly and its very uncomfortable and upsetting. Maybe you can try eat more smaller meals for a week or more and see if it helps. I hope you feel better. UnciornIsis

Hey Susie, long time no talk!!! How ya doin? How are the goaties? Is the dog you're talking about Bo? I think that's his name, black and white and lives on the farm with you? Well, duh, if he's your dog, he lives on the farm with you. Do you still have your website up? I'd love to see pictures of the goaties again. Did you have your dog trained in anything and does he/she go out in public with you? What does he do for you? Sorry, you've probably answered most of this already, I'm just trying to think of all the questions I have at once. Also, are you allowed to go somewhere on your own? According to Dr. Abdallah and my parents and husband, I'm not. I was hoping that with the dog, I would be able to. What do your parents think of the dog? Sorry for the 20 questions! UnicornIsis

I have a similar if not the same thing each of you describe. But for me it is usually my entire right arm, my neck, my throat, my eyes. And sometimes its my entire body. The entire bodylooks like grand-mal seizures. Its been tenatively diagnosed as Dystonia, a neurological movement disorder. My father and hsuband have to hit the pressure point for the affected areas to make them release. They've tested my postassium levels. I do have hypokalemia--low potassium and am on suppliments for it, but they have tested my levels before and after episodes while in the ER and the potassium levels weren't low enough to have caused muscle spasms. I'm going to Shands Jackosnville, Movement Disorder Clinic on 6 March to get more answers and have the diagnosis confirmed or denied. I'll let y'all know what they say. UnicornIsis

Thanks. I'll go there and look it up tonight! Also that's great that you're enrolling your dog. Will you let me know how he/she does? My mom's old boss owned Astra Kennel, she bred and showed pappillions. She's Jean Keating of Astra Kennel. My brother and I each grew up with two of the dogs. All 4 are gone now I'm pretty sure. I just looked her up and she's the author of 3 books now. Anyway, I hope the training goes well with your dog. Thanks, UnicornIsis

Thanks ladies. When I finally have something to talk about I WILL definatly PM you two!! Thanks for contacting me, I really apperciate it. The age difference with the lady in the complex here is not so much that she's older than me, its that she's been through more and very different experiences than I have. She worked at something seh really enjoyed for a while, she is a TOTAL party girl. She passed out drunk with her son around without anyone else to watch him. Her friend was passed out drunk on the sofa and the husband was downstairs "helping" a neighbor move while drinking more beers. The both of them, especially the wife, are so into drinking, I wonder how she felt adult enough to get married and to have a kid. And she just doesn't seem to understand me being sick. For instance she would ask me if I was going back to school, after I had just said I didn't have the energy to work or even stand up for long periods of time and I took a lot out of me to clean the house and keep it up. I mean, if I have trouble cleaning the house, yeah, I want to add school on top of that, because I don't have enough to do and I want to depleate even more energy. I had to smile and just sit there and say it was too much to handle, "at least right now". Its hard to try to socialize with someone who seems to have NO COMCEPT of what it means to be sick for more than a week or so. Sorry for venting. Thanks Ladies. UnicornIsis

Okay y'all I need some help with this one... There are all kinds of working animals. Most are Law enforcement dogs and service dogs for people wtih physical and mental disabilities. But I also know there are companion and comfort animals, not just dogs. I think Mandy' Shadow is one of these. I need help with two things. The first is how to get my oldest cat who got me through the worst part of being sick, how to get her certified is a comfort or companion animal. Also, my husband wants an English Mastiff. He had several when he was little and really wants one. And he's looking at getting one now, instead of later to help me. Sort of to be with me when I have to be alone and to help me when we go out. And maybe that way I'll be able to go out on my own or even with friends so the friedns won't be so uncomfortable. Does anyone know of people or how to find out about this, how to certify animal that you choose. Not get animal that someone else has chosen and already trained. I don't qualify for most of those and the ones that I do, they're more expensive because they require you to pay for the animal and the training yourself which usually runs several thousand dollars for the ones I found that I would qualify for. Does anybody know where to look for this who to contact? I've serached google and haven't found much. Then I found out you can train your own or an animal you choose with an organization. They're called "owner-Trained" service animals. I suggested the idea to my husband last night. He was less than enthuiastic to say the least. He didn't see the point to getting the dog trained as a service animal. He asked me what the dog could actually do for me. So today I spent time looking up exactly what they do. I'm not sure now if they would actually be any help. I don't use a wheelchair and I don't actually have seizures. My muscles lock up and I don't have control over them. Most of the time when it happens I can't talk and I don't have control over the muscles that aren't locked up, so someone has to be looking directly at me to see there's a problem, I can't let them know. He also said that the dog wouldn't do any good for when I'm home by myself, because the dog can't go get anyone when I'm alone in the apartment. I'm wondering if there's anyone I can talk to to see if an assistance dog would actually be able to help me. Does anybody here have working animals? Thanks, UnicornIsis

I need some help or ideas as to how to meet people. I'm not completely housebound, but I can't do much either. I can't drive, or go anywhere by myself. Until I got married in September I lived with my parents and borther and my mom stayed home to take care of me. And we lived around all the rest of my extended family, which was 22 of us total. I have to brag for a second, its now 24, 23 is my husband and #24 is my new baby cousin Daniel!! There are now 2 grandbabies in the family, a girl and a boy!!!! Okay, back to the topic. My husband is in the Navy and when we got married I moved down to his duty station in Jacksonville, Florida. He has family in FL, but they're all in lower FL, several hours away. He gets new orders soon and it looks like we'll be here for several more years at least (if he gets the orders he wants). My husband has tried introducing me to to wives of guys in his command, but it just hasn't worked out for one reason or another. There is a couple that lives in the same apartment complex as us and the wife is a stay-at-home-mom. But she's about 10 years older than I am and we have nothing in common and NONE of the same interests. We've run out of things to talk about and they have a 2 year old son that drives me crazy to try to keep up with him, he's ADHD. I wouldn't be so stir-crazy if I had family around to come visist me like before, but there's nobody down here. The only people I see now are my husband for the few hours he doesn't work and other people's pets in their apartmetns or on their patios on the days I feel good enough to walk to get the mail. Oh wiat, I forgot someone, I see the ducks in the pond on our side of the building. Yeah, husband, pets, ducks. LOTS OF PEOPLE!!! NOT!! My husband works nights right now, which means he goes to work by 2:30 pm and he gets home between 2:00-3:00 am. So he can't take me anywhere in the afternoons or nights to meet people or even just get out of the house. And we're both so tired on weekends and wake up so late because we don't try to keep a different schedule on weekends, that everything's closed or WAY TOO crowded and noisy by the time we get there. Even Wal-Mart is too much for me to handle on a Saturday night to just get groceries. Does anybody have any ideas? Thanks, just for listening. UnicornIsis