sallyann

blackwolf thanks for the tips as far as medicines for the stomach i really cant remember the names . i know some docs have believed anti dapressants.they didnt work. and everything else i would not be able to hold down, thats why doc finally prescribed zofran under the tongue , because i cant handle swallowing it in pill form. sallyann

nina, awesome!!!!! i wish i had the confidence to do that with my boss sallyann

angela, thanks for all of your kind words.and i really appreciate you tips on elevating the bed , ihad ni idea how to go about doing that.i will ask my doc about melatonin.as for my family, i will try to open upto them . i am just so afraid for my daughter as she also dx with dysautomia but lately is doing so well and has so much confidence in her future.i dont want her to think her future is not worth going for because she will just end up as sick as i am. thanks again sallyann steph, thanks for the website, icant waitto learn more. i have been to a migraine doc.he is actually the one who first suggested zofran, i dont take it on a daily basis . i didnt know i could.i was told to take during a BAD cylcle , as if they all arent bad.i do try taking it in the morning , but it usually doesnt stop , but it does help to control the rest of the day most times. thank you sallyann

steph no, my cvs definitly is not under control. my doc gives me zofran under the tongue. sometimes that helps from going into a full blown cycle. but nothing in the world seems to help me with the a.m..what meds are you taking?>i would try anything.it seems as tho i the docs i go to tell you what is wwrong but dont do much to fix it . i dont tolerate medicines well . it seems like they all upset my stomach.i have been vomiting at least once a day for 6 years. ill try anything. thanks sallyann corena you sound like such a sweet person, i am glad you have such a loving family.

blackwolf thank you . i have not yet tried elelvating my bed. i am not quit sure how to do that , but i am definitlty going to try, tha nk you for the suggestion. baby boy thats really a beautifull thought carmen who knows maybe it will work for me too. corina thank you for your welcome . talking about whats wrong is very diifficult for me. but you are right . my family is always asking me whats wrong .i guess it relly does show.

im not used to telling people how bad i feel. i usually try to be overly positive. but i guess i am on this forum for answers an support , so for the first time i guess i am going to let myself whine,SORRY! i know this sounds crazy , i thought we were supposed to feel better when we lay down,but i hate bedtime,as soon as i lay down my neck pain starts then the shakes and im so quizzy i usually have to get up and vomit.i hide my pain often because i never want my family to know i hurt this bad especially my daughter who is doing so well right now.to let her know i am doing this bad would only make her feel afraid she may crash,and i never want to dothat to her.does anyone feel this bad at night? and i know mornings are hard for all of us , but i shake all over , vomit every day and feel so weak and out of it.i hate going to bed ,but i hate waking to such a horrible experience everyday.boy i guess this is why i dont whine often .sorry again . i jusst want to know if everyone feels this bad when doing such a simple thing as going to bed.thanks for listening , i promise not to whine again for a really long time. sallyann

good luck wiith your doc appt .i guess we all do learn something new everyday.i never new why me and my daughter woke up with headaches everyday. daughters blood pressure always goes extremely low.please update on what doc says thanks sallyann

hi jennifer , i too am new to the forum.unfortunatly not new to dysautonomia.its been2 years and counting, iam not bedridden but my life has changed alot . my cardio says the channges in my lifestyle are what helps me the most. i too fear i will get worse .but like you have faith that i wont.every time i am down and think i am crashing again, my daughter brightens my day by saying,"MOM YOU ARE JUST HAVING A BAD DAY . I REFUSE TO BELIEVE YOU ARE CRASHING AGAIN. I JUST WONT EVER LET MYSELF BELIEVE THAT.those words come from a sixteen year old girl (my daughter )who also has dysautonomia.she has so much faith in the future that i hve to believe shes right.have hope always. sallyann

i have changed my lifestyle totally.i work part time in the afternoons .i homeschool my daughter and i take about 4 hours in the morning to actually be able to start my day.but after that i find i have many more enjoyable feel good hours. i may not be able to clean or cook like i used to but i go out to a late dinner .and cleaning just wasnt as important as i used to believe it was .yes i believe we learn to adjust and appreciate all the good we have in our lives .when you cant get out of bed make someone bring you breakfast in bed .when your unable to go out watch a good movie.you may have to adjust to slowing down ,but being a couch potatoe isnt alwys a bad thing. sallyann

nausua was my very first symptom.dx with cyclic vomiting syndrome, till today it is so unbearable, i feel so bad for u and anyone else who has to suffer from this.sometimes zofran under the tongue helps. sallyann

i know what your going thru ,docs told me anxiety at first,awful funny me AND MY daughter were having exact same anxiety at the same time.ha ha sallyann

my resting heart rate is always high , around 100-109.my morning heart rate is crazy.it around 167 to179 everyday.

thanks again melissa , i will be checking in to those doctors soon ,especially for my daughter who at times has frieghtened us so bad with dangerously low blood pressure. last hosp visit she was given 5 bags of iv and blood pressure still was to to low to be released from hosp. i hope i never have to experience that again.

thanks melissa who was your doc in md? i have a cardio who is really kind and supportive , but not as knowledgable as he could be. doesnt seem to understand just HOW awful we all can feel.

thank you all so much for welcomes. sallyann

hi everyone.i have been reading all your post for a long time .my daughter and myself both suffer from pots and ncs. i feel like i know all of you, and would like to send thanks for all the guidance and knowledge i have recieved. i cant wait to join in and become a part of such agreat group of people .talk to all of you soon. sallyann