sallyann

i recently posted also asking questons about florinef for my daughter.she too was very worried about side effects.i am happy to report so far she has had no weight gain and only the occasional headache.and she is a person who does not tolorate very many medicines at all.i wishh you alot of luck.i cant really add anything about how much it is helping because we recenly found out there is alot more going in with her than dysautonomia.i here florinef has reallly helped alot of people sallyann

thank you for all your replies. i wish all of you well. i dont post much anymore because my daughter is doing horrible and we have been spending the majority of our time in the er.im having so much trouble coping with all of this i cant even function anymore.you are all in my prayers sallyann

did you gain weight from florinef?if so how much?anyone who didnt gain weight while taking it?anyway to avoid weight gain?sorry so many ?s daughter very concerned about this issue. thanks sallyann

yes, my daughter and myself both suffer from this horrible dissorder.i definitly believe it is genetic sallyann

our children give back to us what we have shown them you must be a great mom for raising such a generous and caring daughter sallyann

hi i have not posted in a long time because i have been very very ill lately. i still read the forum everyday and continue to be thankful to all of you for your suggestions and support happy thanksgiving!!!!!!!! you are all so wonderful sallyann

hi and welcome i am sorry to hear you and your 16 yo are not well. i too have a 16 yo who suffers ,along with myself.i look foreward to reading your post.i am glad you finally got dx , i know how long that can take. sallyann

thanks for you support laura and poohbear ireally needed it. the hotel suggestion is a good one.but whether home or ina hotel i am still too sick to be able to stand up in the a.m..sometimes my day doesnt begin until early evening.when ever i have traveled i have to pay for an extra day because i am unable to leave the hotel room by the 11 or 12;00 checkout.i usually cant leave until around 3;00 or 4;00.i really cant function until evening.thanks again . i knew i could count on all of you to understand sallyann

thank you lisa and morgan morgan,yes there is quit a bit of friction.i took your advice and sent an e- mail to my brother explaining that i am just too sick to attend and for those who dont understand i cannot help that. i have not seen or spoke to my uncle since the death of my mother many years ago.i have fond memories of him from my childhood though . i have sent my love and sympathy to the family.it felt good that for the first time i didnt make any apologies for my illness.i didnt ask for it , its not my faullt.thanks for you advice, sallyann

hi how do you expain to relatives that you are too sick in the mornings to attend the funeral of your uncle? this forum is the only place where i think people will understand .i know my relatives wont . they see me when i feel well enough to be seen. they never have seen me sick (or came to see me in the hospital)(or call to see if i am ok).if i have not attended a function there has been anger. my uncles funeral is at 8;45 in the morning , and as many of you know i am extremely ill in the mornings . its impossible for me to attempt to leave the house and drive for an hour . i tried to tell my brothers wife that i may not be able to make it ,and her respone was i should try to attend around 10;00.yeah like that hour and 15 minutes is really going to make a difference.i will just tell my pots and cvs and ncs that it has to stop early that day!!!! anyway any suggestions on how to handle this situation? thanks sallyann

thanks for your help everyone! sallyann

happy birthday stacy and laura!!!!!!!!!!!!!!! sallyann

hey baby boy, good question. i have extremely high heart rate in the morning. my cardio was shocked. it is usually around 189 or so just brushing my teeth. i stay in bed a long time after i wake, brush my teeth , lay back down,get bath,lay back down, get breakfast and eat it in bed.you guessed it,lay back down. i have cvs so im usually vomiting in the middle of all that.my mornings are very very long.but as long as i stick to that routine the rest of my day usually goes pretty well.it has forced me to become a night owl and really enjoy the night sky and late night tv. sallyann

happy birthday corina!!!!!!!!!!!!!! sallyann

your family and friends will be in my prayers. i am sorry sorry you are going thru this sallyann