Sara831

Well im sorry to hear your going through a rough time. we have all been there. me and my mom have expeirenced every symptom in your list to extremely intense levels. infact im a down point now. We too are the sickest people that weve personally met, aside from the people i have came face to face with thru DYNA. So i hope that sets your mind as ease abit, your not the sickest one you now anymore Sara

AHAHA that is a hilarious thought. there would be a crazy line for the bathroom too. and with all the brainfog wed never get eachothers names right. Sara

<{POST_SNAPBACK}> Hi Finette, sorry that i didnt get a chance to reply sooner, it looks like my mom beat me to it! I am Sallyanns daughter, Sara. Im 16 and have been dianosed with POTS, NCS, OI, and SVT for nearly two years. I know first hand what youre son is going through being a teenager suffering from Dysautonomia. I also know what its like to have noone at all to talk too. I dont have anyone except my mom who id consider my friend. i used to have so many friends, dates, even enemies, all that a part of me misses. But a part of me is so thankful for. ive learned that all i need to be happy is myself, and im stronger because of this. Ive relized many things about myself from having an illness at a time when were supposidly 'finding ourselves' anyway. were going through so many changes, heart breaks, loves, happiness. and thats just being a teenager, not counting the fact that we now have to face all of that sick, and more often then not, abondonded and not being believed by people our age. Let your son know that no matter what he is facing now, it does get easier. often the illness eases up, or you find a balance in youre lifestyle that makes things easier, and you become stronger everyday. I would love to have the chance to talk to youre son. Im often of AIM, my name is CrazieShortie420, and ill IM youre son as soon as i see that hes online. Thank you! Sara

melly i. am so sorry to hear about you and your son. its all sounds so parrallel to lives of me and my daughter,who both suffer from dysautonomia.i recently posted a quetion about mothers and daughters both suffering.the replies i got were veryinteresting.not only mothers and daughters,but often many people in the same family suffer.please vent as much as you need too.take care sallyann Sorry! Sara was still logged in when i tried to make this post so it ended up under her name, please forgive me for any confusion

Hi everybody. its been SO long since ive posted i just wanted to re-introduce myself. My name is Sara, and im 16. I live in Maryland (where MD, DE, and PA all meet) I have POTS, NCS, OI, and SVT, but ive been doing amazingly well this summer. I dont post that often because im active on another forum, but i dont forget to read all youre posts all the time. plus my mom can always fill me in, i know her as mom (and my best friend), but you guys know her as Sallyann. I hope everyones doing as well as they possibly can, and i look forward to talking to you all later! Sara

1. Sara 2. 16 on April 4th 3. Pots, ncs, ist 4. 15 5. Maryland 6. severe hypotension, nausea, dizzyness, migranes, Tachycardia, fatigue, brain fog, heat rushes, chest pain, shortness of breath, loss of hearing, severe vision problems, shooting pain, numbness and tingling 7. all of the above just not as bad 8. inderal, pindolol (or something like that) both beta blockers 9. just Zofran for nausea

Thanks Jamie, One of my doctors does require me to keep a journal of all my symtoms, and theres no cause because the headaches are litterally non-stop. Thanks for your suggestons and im glad to hear your headaches arent as frequent. Im not finding any improvements from the inderal and i may stop taking that and hopefully they will improve then.

Thanks for your DYNA suggestions, i am now a part of DYNA and soon i will meet tons of dysautonomic teens. Im so glad that I'm part of such a great orginization. Thanks agian!

I have always gotten headaches about 4 times a week, but now that i started taking Inderal, I have a headache 24/7! I know they give people Inderal for headaches, but i really think mine are caused by it. Does anyone eles have this problem? Any suggestions? Thanks.

Hi, I am really interested in a post you put up in october... "Hi everyone! I've been getting this weard feeling in my head and neck for the past few days. It feels kind of electric like..and just plain weard. I'm not really sure how 2 explain the feeling of it. When this happens my eyes feel very weard, and I get a llittle dizzy and very confused. I posted something a while ago about my ears and neck bothering me. Im not sure if that has anything to do with it. The bottom on my head it very red, and a little part of my neck is..where it hurts. My lower back has also felt sore. Im not sure if this is also related to Pots..and if any of you have experienced this." My mom has complained for months about what she describes as 'electric shocks' throughout her body, and this is the only time ive heard anyone else use the word eletric. i have not expeirenced these, but i was wondering if you have found anything else about this, or if you are still expeirencing this. please let me know. I wish the best of luck to you. Is anyone else experiencing this? Thanks.

Yes, my mom also has pain in her hands and swelling. she cant even sign things in the morning. i experience some of this when i first wake up, but it goes away pretty quickly. We didnt think it was related to dysautonomia but well be sure to bring it up on our next doc. appointment. Good luck

My old school told me that they didnt feel comfortable with me attending there school because it was a privet school and they were worried about lawsuits with a student that kept going into attacks and passing out. I was really glad they said that because i found a great alternetive school that is based on an independent system of learing so i dont have to be at school early in the morings or be at classes or be under stress about grades because there arent any of those. You write a thesis on any topic you choose and present it to a board who approves or disapproves when you feel you are ready to graduate. This works really well for my illness because i dont have to miss school classes for doctors appointments ans i can lay down when ever i need to. With this school comes great possibilites and id like to hold something there for National Invisible Chronic Illness week. Please write me back for any suggestions of anyone who is battling with or educated about dysautonomia that could possibly speak at my school. Im also going to inform congressmen and politicians about this plan and im looking for anyone or any suggestions that could help this work and help us all to get heard. My school is located in Newark, Deleware. Please contact me if you are willing to participate, or know of anyone that i should contact.

Youre deffinently not alone, although i thought i was. Thanks for posting this so i know im not crazy. It happens to me like once or twice a week. I fall or yell for my mom, and thats really the last thing i remember untill i come to, but i never lost consiousness and i can remember bits and peices, like my mom telling me to breath but i have no idea how i got on the floor. When this happens to you do things around you look really strange? like once i was on the boardwalk, and all of the boards looked like they were shaking under my feet. Thanks, and good luck.

Thank you both so much for letting me know im not the only dysautonomic teen. I will deffinently sign up with Dynakids. I am going back to the beach in a few days but i when i am able to get on the internet regularly when summer ends, i am looking farward to really finding more teens with dysautonomia and trying to go to some conventions too. I added UnicornIsis4 to my AIM buddylist and i hope i can talk to you in the future. Thanks agian, and good luck!

Im not doing well with the heat AT ALL. About three days ago i was tanning by a pool and i started not feeling well. I took my Blood pressure and it was 90/43 and my heart rate was fine my mom went to get me salt and fluids but i had to call her and tell her to hurry because i was feeling alot worse. my heart rate was 118. It was about two min. till she got there and my heart rate was 157. she called an ambulance but it went down so she told them not to bother. it was pretty scary, and i know i cant lay out at all on a hot day, or do much of anything not inside my house on a hot day. Good luck!

I am 15 years old and have a few dysautonomic disorders. My Cardiologist and Nuerologist have described it as 'a ball' of things including NCS, POTS, and OI. There still looking for and underlying cause and why some of my symptoms leave them clueless. My mom also has dysautonomia, so she understands what i go through. It is great to have someone who understands, and she is my best friend so i can really talk to her. But when I turn to anyone in my age group i become a victom of the horrible sentence we all hear 'Well, you look fine' and they think im crazy or that im faking it. I think they dont even want to understand. I drives me out of my mind!! i really would like to talk to someone in my age group who is going through what i am, but i cant seem to find any. Are there any of you out there?? -Sara

I hope he can a good senior year even off any meds. Let me know how Dr. Grubb works for you. Me and my mom have stayed with our cardiologist, and were looking for another doctor thats more expeirenced with dysautonomia. Thanks.

What you described is exactly what i have been feeling as well, i wasnt sure how to describe it, but anxious brain fog almot fits it exactly. I am sorry you are going through this, and i hope you find something that works. When you do- please inform me! i hate feeling this way too. I wish you the best of luck. -Sara

The rash is so strange! It dosent hurt or anything and i didnt even know I had it untill my mom told me! And youre right it is good to have a sign to show its real, but it scares me beause i dont understand why a dysautonomic disease could cause a rash on youre chest. Thanks to ereryone for wishing me well, I wish the best of luck to all of you. Thanks for tring to find out for me mom! Love You! -Sara

I wish the best of luck to your son, i understand how frustarating it can be. I have had a bad experience with the drug, Zoloft, before (It made me feel horrible and crazy) so I am very scared to try any other medictions as well. My Doctor is Dr. Pennington, and hes a Cardiologst. I hope everything turns out alright with you. -Sara

I Love You Mom! Hang in there, you are a really strong person for dealing with what you go through everyday, but amazing for dealing with my condition and supporting me as much as you do. You are the best mom and friend anyone could ever ask for. I know how much you suffer, and it feels great for me to know that there is someone so close to me who knows exactly what I am going through as well. Thank you so much, you are my angel on Earth, I Love You.

Hello, I am 15 years old, and since January i have whatched how horrible having a dysautonomic disease can be. My mom, Sallyannsturgill, had passed out at work and hadnt stopped passing out or feeling horible since. She had a tilt table test that was positive for Neurocardiogentic Syncope. I saw how hard things were for her to the point where she was often frightend to leave the home, and had to go on sick leave from work. she would always tell my dad that he could never understand what she was going through but i had always felt sick and dizzy my whole life, and had come close to passing out several times. In third grade I had many tests on my head to see why i often felt 'in a dream state'. Of course, all were negative. About three weeks ago, i passed out in my bathroom and fell so hard they thought i had fratured my back, and stayed out for a long time untill my dad picked me up off the floor. When we started talking to all of my moms doctors we were met with most thinking i had faked it for attention since my mom was passing out. that was so frusterating! My moms cardiologist did take me seriously and set me up for a tilt table test that i had a week ago. I vomited and passed out before the table had came to a full upright position. I too have Neurocardiogentic Syncope and i can say I understand how horrible it is to have a dysautonomic Disease first-hand. I am really confused why my mom, age 41, and me, age 15, with both be strongly faced with this within months of eachother. I have been feeling worse since then, and today I had my first episode at school. I struggle with Brain Fog pretty badly, and I was wondering if anyone has any suggestions to help with that? I will not ever give up my search to find a way for me and my mom, who is my best friend, to live a normal and healty life. I wish the best of luck to all of you. -Sara[font=Time s]