all4family

Hi ana, I had it done (or at least attempted to) without sedation about a month and a half ago. I have multiple problems with medications, and REALLY wanted this to work. Well they never got it past my throat. It was a nightmare of a story. That being said though I have heard of a lot of people who do it and are just fine. I know that if you agree in the begining, (at least this was my case) they can give you the sedation if there are any problems along the way. So if you wanted to you could try without it, and if it didn't work just opt for it. Good luck. Not an easy decision for anyone. Suzy

Hi Broken_shell, Yes I get this too. Especially if I have to hold my head up for too long. I feel like I am holding up 1000 pounds up there sometimes! I don't get the quivering thing like you were describing, but I do get a lot of popping and cracking. Also I get swelling there. It will look like a big goose egg. The only thing that was found wrong is I have a pinched nerve farther down on my neck. What I have found to be helpful is to lay my head down, and relive the pressure of holding my head up, and even better is a neck massage to relax my neck. Also a warm heating pad, or Ice pack is nice depending on if I am hot or cold. Sorry your experiencing this. I know how painful it can be. Suzy

Hi Janie, YES, YES, YES!! This is one of my worse symptoms too!! I am so glad you posted this, because I am sitting here so scared right now, because I was talking to my mom on the phone, and had to cough just once, and then tried to continue talking, and thought I was gong to faint. I had to tell her I just couldn't talk right now. I don't get the burning you describe, actually I do in the face, but not the mouth, but everything else you describe definatly! Plust that is one of the reasons I will faint. More then once when I was talking, and trying to get the whole thing out, (was also standing) I get all that, then faint. I did it in front of my 80 year old neighbor, and hit the cement, now she is afraid to talk to me unless I am sitting! (which is actually a good thing) Does your head feel like your straining??? You know like you are trying to have a BM? It's hard to be a chatty person that can't chat!!! I'm glad too that we have each other on here!!!! Thank you so much for posting this...it's made me feel a little better! Suzy

Hi Sophia, Thank you. The back of my chiar reclines a little, but it is just enough to make a difference, and still leave me to where I can see where I am going. The difference IS HUGE!!! Thanks so much. Hi Jan, yes my husband was so right! (but don't anyone tell him I said that!! ha ha!!) Thanks for the encouragement! Hi BelieverEM, Thanks! I like the name Zoe. I didn't know it meant that! Yes it is definatly life changing! Well I think I have a name for it. There is a little story I have to explain how I got it. Not being afraid to be seen in my wheelchair has brought me a lot of unsolicited advice, and critisizm, but has also helped me to see what matters more. I have a neighbor actually the one I got the first scooter from. He is in a wheelchair, I think for arthritis. Well he has his grandkids come over, and I have always talked with the daughter when she is there. I don't usually let my kids play in the street, because it is dangerous. Lots of people fly down our street. But when they are there, there kids play all over the street, so I allow it, but I stay right with them. Well everytime they are over I stay with my kids, so I automatically end up taking care of there kids too, which there are 3 old enough to play in the street. Then they will decide to go inside there house, and they just tell me, (they don't ask) to watch the kids, or even better like this weekend just go inside, and the kid tells me I am watching them. But the kids are playing in the street, and don't listen to me. But I do it anyways, and never stand up for myself. Well this happened again this Easter weekend. So here I was in my wheelchair trying to keep up with all the kids so they don't get ran over, and the neighbor came out in his wheelchair, and began to tell me about his daughter. (earlier she had invited my daughter to go watch a movie, but we already had plans to go to my moms for dinner.) He said how great she is, which doesn't bother me. But then he told me they are rich, and that I need to let my daughter go with her, that she needs that. He said she needs time out with the "girls"(What am I a guy?)and that the college is begging her to go work for them, but she is just such a great mother, that she is all about her kids. And if she likes my daughter that I should let her go, because she doesn't like everyone, and can buy her lots of stuff. (I wouldn't have let her go anyways, because they don't keep a close enough eye on there kids, and they ride without a seatbelt, and are allowed to climb in their mothers lap while she drives, as far as I have seen. But I actually would try not to say anything rude.) Anyways this lecture went on and on, and he began to include other neighbors and what profession they do. (the funny part is I had done all the same professions before having my kids, I chose to quit working when I had them.) But all the positive inner talk wasn't making him stop, and this felt like a dagger through my heart. He just didn't quit, and when I was on the verge of crying, and certainly didn't want to let him see that, I said oh...gotta go. Oh...and my daughter heard this whole demeaning conversation. I went home and needless to say was very upset. I know I am a good mom. I don't need someone else to tell me that. (But luckily my family does all the time, including my kids!) At home I had a lot of encouragement from my very loving family, which helped me so much, and I thought how luky I am to have them. Then the next morning we went to an Easter egg hunt that involved going into shops to get "prizes". Everything was busy and hectic, and people stepped in front of me, and if I got in line people would just walk up and stand in front of me, like I wasn't even there. Even if I got right up next to the person in front of me. And this happened every time I was in line. In one building I was just trying to get out of everyones way, and found a quiet corner, and parked there. Well next thing you know everyone was walking by becuase it was at the bottom of a stair well, and I was stuck there. I couldn't back out, and there was even a lady who was very rude to me. So finally when I was able to get back out I was really relieved, but my husband was just getting really irritated with how rude people were being to me. (I was just glad I wasn't the only one who noticed it.) I was getting very discouraged at this point, and really just thought I should just sit outside. But then we went into a jewlry store, and the first thing I seen was a young (I'd say 8 or 9) girl, in a wheelchair. Well she seen me, and her eyes lit up, and she got a sucker, (the prize they were giving out at this store) and made a beeline for me, straight through the crowd, and asked would you like a sucker?(Which they weren't giving to the parents, and she didn't give one to anyone else.) She had a grin from ear to ear, and I said thank you, and I like your wheelchair. She went back in, and I left and thought to myself how lucky I am. I have a family who loves me so much,and I am lucky to have the support of friends like you guys on here, and I am luky to have had a chance to understand what is important in life. And I am lucky I was able to afford the wheelchair when we found it, and I am lucky that I can get up out of it when I need to, and I am lucky that I have it to sit in, to give me a better life, and I am lucky to have met a girl, so filled with love, and understanding at such a young age, that you could actually see the love in her eyes, and through her own struggle to get along that day, she offered me friendship, with a smile on her face. After the insults of the weekend, and the fighting of the crowd, I was ready to give up, but this just made the rest of my day so much better. All I could think of was girl you are so lucky. So....the name for my chair is Lucky! Thanks all for all your support! Suzy Thanks for

Hi Miriam, What is a uro-gynecologist? Is it a gynecologist and urologist combined? THX, Suzy

Hi, Thanks for speeking up, and wanting to make a difference! I want to also, and would be happy to help any efforts you make. Here is a website that may help. Its National Organization for rare disorders. I haven't looked at it yet, but will this afternoon when I have some extra time. http://www.rarediseases.org/ Also I think some things that could be done to help is to get someone with good writing skills, or even use information already printed like on this site, get a good letter going for "when you visit a doctor." Then whenever you go to a doctor you can bring this information in to them, and hopefully they will read it. Something with the most basic things on it, and also explaining conditions comonly related to dysautonomia. Maybe in the form of a letter, with places to put your personal information. The one thing I have learned time and time again is that there is strength in numbers. The more people that we can get to speak up the louder we will be. If everyone wrote a letter describing how this disease affects there lives. Not that it is just a pile of symptoms together, but really to describe how difficult life can be when you don't know what to expect from moment to moment from your own body. The way that little things that others take for granted takes a huge amount of effort for us. Then have everyone send those letters in, sort of a campaign for the POTSIES. Where we would send them to, I'm not exactly sure yet, but I will look into it if there are any takers. I know there are a lot of very resourceful people here who probably already know where we could start. Just some ideas! Suzy

Thanks for that information Julie! LOL!! I thought the last diapers I would be changing for some time was my kids!!! Suzy

Hi everyone, thank you all so much!! Babette, I love the names!! I can see me saying come on spot...lets go for a ride! Leaving anyone in a ear shot looking for my invisible dog !!! And I love Robin! because I do feel free as a bird! Ana, thank you, thank you! I won't quit till my wheelchair does! (which I hope it doesn't!) Jennifer, I like Vitali! Now just got to learn how to pronounce it!!! I love your name of Bolt! I can hear me calling onward bolt!!! Pots Girl, POTSPOWER away!! Love it! Do you think I could get it on there in neon lights?!! LOL!! Big HUG back at ya! Kansasgirl, I live in a small town too. We only have one hospital in our town, and everyone there who seen me WAYYYY too many times when I was first sick, think I am just a big hypochondriach! I live very close to my hospital, and have driven by in my wheelchair already twice. I did feel like that when I got the first scooter. I put a post in here, and everyone helped me out so much. There will be lots of "opinions" of others to deal with your whole life, but they don't have to live your life. I spent 5 years missing things, because I just was so sick, and didn't know what was wrong. I was told it was anxiety. One of my most public episodes was when I felt "weird", and like I needed to lay down. I was in a big gymnasium, with my kids at a fair type of thing. I felt bad before I went, but had always taken my kids to this, and I really didn't want to miss out on one more thing. So I left my kids at a stand and sat on some bleachers. Everything in my whole body said to "lay down you've already overdone it" but I fought that feeling, and talked back to it, and said "the doctors have told you it's just anxiety wait it out, anxiety passes...you don't want others to think you are "weird" by laying down in public." Next thing you know I woke up, and had EMT's working on me and giving me asprin etc. I got to the hospital, and guess what they told me......you guessed it it's just anxiety. Your heart was racing pretty fast, and now look here you are, and your heart rate is fine!! (yeah...in bed!) So that was it for that gym. I just quit going. My very intelligent (IMHO) daughter said to me mom which looks weirder? You in a wheelchair? Or you sprawled out on a floor?! As far as my symptoms go I can say that I am not as bad as I could be. I know this, because I was WAY worse in the beginning. I fall down a lot from being imbalanced, or dizzy. I walk into things when my head feels weird, and still have a bad bruise from the last door I slammed my knee into. And worse of all if I get my "feeling", that I at least understand what is causing it now, and don't sit, or in some cases, if it's bad enough, lay down then I faint. I also have really bad pain all over my body. So the wheelchair helps a lot with that. But even if I didn't have that if the only benefit would be to be out somewhere, and not feel spacey, or to cook dinner without having to lay down between each thing I do just so I can think long enough to do the next thing, then It would be worth it to me. I used to think I had a brain tumor or something because of the way my head buzzes. Well brain tumors don't go away when you lay down. I have to admitt, I thought that if I got the chair, that I would still have the episodes in "public", because it is so ingrained in me that it is anxiety. But I don't get them if I stay in the wheelchair. Ask yourself this. If it makes even one day of your life better, and easier to live, then would it not be worth it to you? And as far as people go they are going to think what they think. The people that matter more in life is the ones that except you with the limitations that you have. And the ones that will be happy for you to be able to do things that make you happy. And if someone sees you in a wheelchair one day, and not the next maybe they can ask you, and you can explain, then you may make a friend that will understand you. At first I felt guilty, but knowing what I know now, I am no different from someone else who uses a wheelchair. There are all kinds of reasons for using them. I think that if you think it could help you, and you can get like you said a manual one to try then give it a try. You can pick up manual ones kind of cheap used. If you want to read about how I felt before, here is the post I put up when I was really upset. http://dinet.ipbhost.com/index.php?showtop...p;hl=wheelchair Sorry didn't mean to go on so long, but I had a lot to say on this subject, as I wish I had known sooner that this one tool would have made my life so much better! Thank you everyone for your constant support, and encouragement, and for sharing your lives and experiences!! Suzy

Hi EM, and Janie, Thank you, thank you, thank you! EM, I read your post about your wheelchair getting taken away...I'm sorry you'll be without it, but congratulations that you will own your new one, and can deduct it on your insurace premium! How long will it be before you get that one? Thanks!! Suzy

Hi Julie, Sorry you are experiencing this also. But I can't tell you how relieved it makes me to know I am not alone! I looked up the MCAD doctor, but haven't called yet. I guess I don't know what to say. You know something along the lines of your really far away from me, and I can't come there right now, but maybe you can treat me over the phone!! I know that a good sale can cause all sorts of reactions in me!! ha ha! I have a bad cough, and cough all the time really hard. And the reaction from the bladder can also be really hard!! I wear a pad all the time now...My husband says he'll get me depends!! (it's a good thing he's so good to me or I'd clock him!! ha ha!) How are you doing? Suzy

I'm so sorry for all that Sara and you are going through...my kids and I just said a prayer for Sara, you, and the doctors in her care, and will continue to until we know she is home and doing better. Please take care, and when you have a chance keep us updated. Big Hugs for you and Sara Suzy

MMMM....now that sounds like some medicine I can take! Thanks for the idea!

Hi AZgirl, I can't tell you for sure what med will help you, becuase I don't do them very well! But I can tell you if you are feeling that way on inderal (that is a beta blocker right?) that you might want to take your heart rate when you are laying down. When I was put on a beta blocker even though I was having severe tachycardia, when I laid down my heart rate was 30 35 and 40! Had heart doctors think I was in heart failure! But it made me feel awful. Just a thought. Also I really get what you are saying about trying to stay upbeat...I learned to try to not "look" sick, because I was always told it was anxiety. I get severe virtigo sometimes, and can't stand without swaying like I am drunk, and then I would be accused of taking street drugs!! It's funny, because I wanted the doctors to believe that I was sick, but at the same time I was being told all my symptoms were anxiety, or the one I liked the best was I think you are just a little dramatic about your symptoms! And that was when I was trying hard NOT to look like something was really wrong. Suzy

Hi Dani, So sorry for what you are going through. Youth is a time your supposed to be having fun, and it just seems unfair that you can't! Everyone here has offered really good advice, and I don't really have much to add to that except that when I am down so bad that I can't leave my room I lay in bed, and make "plans" of things I want to do. I usually keep a notebook and pen right there, and for example I want to go camping really bad this summer, so I have been writing down all the things I will need to get together, and where I can get them cheaply...I will look at sale ads for what I want....etc.... It keeps me from getting to down, and keeps me thinking about good times to come! Also, I have improved since I first became sick. But I was on some medications that made me real sick!! But I am at least happy that even though I am pretty sick still at least I am not where I was, and that maybe that means I will get better!! I hope we all will!! Take care. Hugs Suzy

Hi potsgirl, LOL!!! No I don't have a name for it.....yet!!! Maybe you all could help me!!!! What's another word for gives life!!! Thanks! Suzy

Hi Everyone, I just wanted to tell everyone that I had been using the scooter we bought from our neighbor for 100 dollars, and while it was helping a lot, the battery didn't last as long as me! So we went to a local second hand store, and they had 2 power chairs there. I had seen them there before, and asked about them, but they were practically brand new, and they wanted 2000.00 bucks for them! Wich I can say they were worth it, I have priced some, and seen a lot worse off ones for more! But this day we came in and there was a sign that said all reasonable offers considered. We shop here a lot, and the lady knows us, so when she seen us looking at them she said 500 dollars for either one! I got the bigger one, because I wanted the batteries to last longer! This was on Friday, and since then I have taken my kids bike riding to the park. Up to the store, and was able to actually shop, and make good decisions, downtown to our library, and I didn't have to sit on the couch right away. And that was just one part of the trip. I was in the chair for 7 hours that day, and it was just a beautiful day, (although I got sunburnt.) I also am driving it in my house. I threw a birthday party for my mom, and cooked dinner last night without running back and forth to the bed! My husband said that's the girl I married!! I can't believe I had so much stress over something that would make me be more like myself again! I can honestly say I am no longer worried about anyones oppinions. To be able to do things like I did before makes me very happy!!! And the cutest part is my husband takes the old scooter at night when he gets off of work, and we go for a cruise up and down the street!!! He said he has to keep up with me!!! All I can say is, just like others told me...... I LOVE MY WHEELCHAIR! I just wanted to share my happy news, and say if anyone is thinking about a chair, and they are worried about what someone else will think, don't! Your life is worth living the best way you can, and if it takes tools to help you do that, then so be it!!! Oh...and my batteries last from morning until night!! They never lose any power.... Suzy

Yes, I get very confused, and mess my words up a lot. My talking becomes very garbled and I feel like I can't control my tounge with this. I once had a friend of my daughters ask me if I wore a tounge ring! (I don't)! These symptoms have actually improved for me after I got off of xanax. But they are still there, especially when I am tired. I do know that beta blockers do have a lot of side effects, but even so I have to agree about stopping them suddenly. Even when I stopped taking xanax (and I was really sick on this) I had to taper. They had tried to stop me really fast, and I nearly had a seizure. Going from one thing to another can also cause you to feel this way. I'm sure that seems how you are a nurse you can appreciate this....Didn't you just start or stop a different medicine? I hope you get feeling better real soon.... Suzy

Thanks Mkoven, I will look that up. Suzy

The first problem I was ever officially diagnosed with was a simple pinched nerve in my neck. The doctor who looked at my shoulder said she did sports medicine, and had never seen that bad of I guess muscle knotting. So making the conection that the neck was probably causing the shoulder problem I went to a ciropracter. I have always had problems with my bones especially in my neck cracking, so I thought no big deal. The first time he did it I thought I felt better, but later I really seemed to get spacey. I had it done 2 more times, and my neck (as it seems to sit crooked) will only pop in one direction most of the time. The third time he did it he tried really hard to get it to pop in the other direction, which it just doesn't like to do. Well he couldn't get it to pop, and I ended up with a severe headache, neck ache, and felt real weird for a while later. I also ended up with a 500 dollar bill. I personally think it just made things worse for me. Just wanted to share that with you. I like the idea of massage though! mkoven can you tell me if your insurance covers that? Suzy.

Hi, I'll send you a PM... Suzy

Very good suggestions potsgirl! I have this problem too...mine is more of pain then lack of thirst, but I must say I don't feel really thirsty very often...If I drink water too fast, or sometimes for no reason at all after I drink I get chest pain, and then begin to throw up...this will sound weird, but if I drink water standing, or sitting I am almost guarenteed to vomitt at least once from it, but if I drink it laying down I can usually keep it down. It makes staying hydrated difficult! I like pots girls suggestions of eating food with high water content...as long as I am laying down I can accomplish that! I hope you get some help for this! Suzy

I also used to use it. But like EM I had a bottle that went rancid...hard to take once youve takin it rancid! But I think I will go get more too...I also read somewhere that if you take it with cottage cheese there are more health benefits, and something about fighting cancer?? There was also something else you can mix it with if you can't have dairy. I can't remember why it said that, but I will see if I can find the article. (I think I read too much! ) Thanks for mentioning it...gotta put it on my list! Suzy

Hi! I'm from Arizona too! I have all over body pain constantly 24 hours a day, but I can't take anything for it. Some days I can't walk for the pain, and when I get up I look like a 80 year old! I have migrains too. I wish I could say I have good advice, but I can say I sypathise. The things I do, do that help are I stretch a lot to try and relax my muscles, I listen to relaxing music to try and get my mind off of it, and I try not to over do it, which sadly it's only 9:30, and I have already gone over that limit. I hope you find something that will help you...Also...potsgirl has started up a group here in Arizona so we can meet. We haven't gotten the first date down yet, so if you are interested here is the post. http://dinet.ipbhost.com/index.php?showtop...t+group+arizona I hope you get feeling better real soon! Suzy

Hi Sophia, Thank you for answering....I don't blame you for not wanting to give specific recomendations. Yes I was diagnosed with sleep apnea as a matter of fact. But when I did my ttt I also had the supine hypertension, and the neurologist said sometimes that happens. But at least this gives me something to ask my doctor about. So thank you. Suzy

Thank you everyone for your replies...sorry it took me so long to get back, I start posting, and then next thing you know I am too tired to keep going....sorry! Hi AJW, Thnks for the advice. That really helps a lot. I didn't even know what to call it other then leaky me! I have tried doing those exercises they have you do when you are pregnant. Kegel I think it is called. I just don't seem to feel it when I got to go. I wouldn't even know I was leaking if I didn't feel the wetness!!uughhh!! I thought I shouldn't have to worry about this till I was my grandma's age! That helps to know that it is at least controlled by the ANS, so I at least can put aside my worries that it might be something else. And I did have a positive test for the mast cell thing, although both tests weren't positive so they didn't diagnose me with mastocytosis, but I am going to try and get in with a doctor who knows about mcad. And I think but I don't remember that there was somthing about red eyes for that. So I will go look that up today. Thanks a lot. Hi Miriam, I was checked for a UTI, and I am good with that. At least I was a while back, and I had the same problem then. I also think that is interesting that you got to the eye and ear clinic a lot! I keep getting "ear infections", and they just don't seem like infections. They start with these things like pimples on the outsides of my ears, (they are probably on the inside too, who knows.) then it just gets real irritated , and then for months I am fighting these. And the funny part is that I got one right after having a strange reaction to an antibiotic. I seen somewhere else that you have mastocytosis. Is this something that may be related, do you know? Thank you. Hi potsgirl, anoying YES!! Although I don't get strong urges to go I will suddenly feel like I got to go, and then make a run for it, and usually not make it! Then sometimes it's niagra falls, others it's just enough for me to have to change my clothes!!! It's like my bladder has run amuck!! Thanks for sharing that! I'm glad to know I am not the only one having some problems there!