sallyann

thats cool!!!!!!!! ha ha

i am really happy to hear things are working out for you. good luck with your future

sallyann

i know alot of you have neck pain.how severe is it? what part of you neck ? mine is on the left side and in the back of my head it just gets worse and worse. parts of my neck are actually very tender to touch .i cant get comfortable at night no matter what side i lay on the pain is just horrible.yes i have had an mri about a year ago . nothing showed up .but about 8 years age i went to a doc who said swollen lymph node .followed up with another doc who said it was a bone.so all i really know is that it hurts like heck.any thoughts .

sallyann

toprol-didnt work for me , made me feel worse

inderal -lowered hr to 120,but felt horrible on it ,side effects werent worth it

sallyann

that is so good to hear. i had a similar situation with my cardio. when i was first refered to him, he really did not know what was going on with me , he used to joke and say i was his mystery patient . all he could tell me was he could see what was happening to me ,but couldnt figure out why,then afterTTT ,next visit he had so much infeo on pots and ncs .he admitted he didnt know alot about but was consulting with someone who did,today he is very informed and welcomes any info i bring to him.thanks to all the docs out there who take time to believe.

sallyann

my daughter always comments on how bloodshot my eyes get.i too have no explanation for that sorry.

sallyann

thank you all for your replies.the reason i posted the question in the first place is i believe my father also had something to do with dysautonomia,he would pass out often.and of course me and my daughter having been dx .it really does seem as though there is a genetic factor here , ihope someday they find the gene and we can all be cured.thats not tooo much to ask is it?? sallyann

hi

dont feel badfor calling 911 .between my daughter and myself have called about 8 times.the neighbors dont even bother to look out of thier windows anymore.

sallyann

for me lifestyle changes seem to be the most helpful,although i dont think i will ever be back to what i was before dx.

sallyann

welcome rachel

my name is sallyann, i also live in maryland. i am 42 years old and have been dx with pots,ncs,cvs. i have a 16 year old daughter who also has same dx as me , with the wxception of cvs. both of us have been bedridden at times , lately my daughter is doing very well.me not so good.we both chose to change our lifestles to try to maintain our symptoms ,and for the most part that works very well.i lok foreward to reading your post.

sallyann

Hi Sallyann,  I had the GI pacer done at St. Vincent hospital in Indianapolis,  Dr. Thomas Nowak is the GI Dr. that specializes in motility problems.  Yes I have also have other motility problems with my colon.  I had severe gastropresis,  had a difficult time keeping anythin down and lost quite abit of weight.  I do eat better on most days, smaller quanitities,  but at least it stays down.  I guess the part that I have unsure about is that people just don't understand because it is not common so don't really say too much.  I lalso have a cardiac pacemaker which I have had for almost 8 years.  Guess you could say I am bionic.  (HA HA)  Guess I just want to be normal whatever that is! Have you had a problem for along time?  What medicines have they tried?  Hope you have a good day.      Becki

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becki

thankyou yes i have had many problems with my stomach,brfore i was dx i was seeing so many docs because of nausea and vomiting and unable to use the bathroom.its prabably been about 7 years now.i cant remember all of the meds i tried , i would just vomit when i took them , thats why doc finally prescribed zofran under the tongue.sallyann

i probably shouldnt say this but i think its time for a new boyfriend

sallyann

julie,

my daughters friends bring sweatshirts to our house.i keep the temp at 58 all summer long and had to put a thermometer in my bedroom because i always think the ac is broke because i am still hot.everyone calls us eskimos,so yes heat is a real problem for me.

sallyann

my daughter wass on zoloft and for her it was horrible .she definitly had increasd anxiety,and depression.i would inform your doc

sallyann

dizzygirl,

i am so sorry for your horrible experience, yes , next time go to the er, i know that is the most frustrating place for us,but you never know if something else may be happening. i was given medication before an mri ,and had a similar experience,not as bad as yours but it was pretty scary and iwas down for about 3 days. your boyfriend should have checked on you sooner.if you havent already you need to sit him down and explain your illness to him,and the effects many medications can have on you.i get so angry at boyfriends and husbands that just dont get it.it took my daughters boyfriend a little while to understand.but now he is so attentive to her , i no longer worry when she is with him.as far as my own husband i dont think he will ever get it!!! good luck at your appt,keep us informed

sallyann

michelle,

well now i am curious as to how many dysautonomics have had bells palsey.

hi

i am sure this question has probably been asked before, but how many of you share dysautonomia with your mother or daughter?i find it so weird that my daughter and myself both suffer from this , we both also had bells palsey.how strange is that?

sallyann

becky.

i am so sorry you are missing yor daughter, i only have one daughter,and we are very close, she will be applying to colleges this year and that makes me proud , but also very sad,i know itmust be so hard to let her go.i wish her success.

thank you for your info on your pacemaker , iwould definitly like to hear more about it , why do you have mixed feelings about it? what was your dx before the pacemaker? where didyou have it done? i actually had one appt years ago with dr. parkman,the doctor at temple who is well known for the pacemaker,i still have his phone # in my cell phone.

melissa,

i have found quite a bit of info on gastroparesis.i am going to try to get an appt. with dr parkman.ihear it takes quite a while.but hopefully it will be worth it.thanks again

sallyann

melissa

thank you so much! i definitly dont want to solve one problem and create others.i think all of us have enough to deal with. i am not sure what gastroparesis is .i will look that up now.i need to find a good gi that is close to my area ,i traveled a great distance to see the last one,and i cannot afford to keep traveling back and forth .thanks for the links.

sallyann

thanks for the article mighty mouse!!!!!!!!

Here's an article

http://www.ece.mcmaster.ca/news/seminars/mintchev_sem.htm

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thanks julie sounds hopeful

dayna

so far i am just researching.i never knew a stomach pacemaker even existed,but after 6 years of intense stomach problems i would try anything.

thanks

sallyann

amy

i am so sorry you feel so bad. i remember when i was first dx with pots,i thought the doctors were missing something,i guess sometimes i still feel that way.it was just so hard to believe i could feel so bad and ONLY have dysautonomia.in my case it was true. ONLY dysautonomia.well that was enough. i learned how to change my lifestle and accept the new me.it has gotten easier ,once i learned my limits . i definitly agree with second opinions ,even third opinions. we are all here for you

best wishes

sallyann

looking for info on stomach pacemakers.are they helpful for all of us nauseated people? anyone heard success stories or horror stories?

sallyann

hi chrissy

welcome!!!!!!!! i am also new to the forum.and i also have a daughter with dysautonomia, 16.do you AND your mom have dysautonomia?i havent been on the forum long , but i am intersested in how many other mother ,daughter suffers there are.

sallyann

radha

i had tinglng in my lips and the whole left side of my face , the doc checked my b-12 and found it was very low . after b-12 shots tingling subsided.i hope that helps.i know its such weird and annoying feeling.

sallyann

rita

iknow exactly what you mean unfortunatly i dont have a solution. i have not had much luck at all with docs. my cardio is great , but admits he doesnt know a whole lot about dysautonomia.the convincing part for my pcp (who thought i needed to see a phycologist ) was when my daughter began passing out and ekg was abnormal.good luck i know its frustrating

sallyann