Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Welcome! I have a 20 year old CHaRgEr and it is a delight to hear from another adult. is far from as mild as you are. I wonder if her sleep problems have to do with dreams....Again, welcome. This is a good place to be. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 hello there... I try not to watch scary movies and just watch comedy tv shows before I sleep, it usually helps when i watch a funny show. I don't have a boyfriend and never had one plus rather not have one. I'm not interested in beer, wine, coffee, smokinng, romance,, I think its' my syndrome that makes me not wanting love with a man. My friends I had as a child don't really want me as they moved on with their life. I only have 1 friend left. She recently moved to NYC so now I'm all alone. Maybe I do get depressed that's why I get those imaginations or dreams. I used to get migraine headaches growing up...my periods have never worked so far I only had about 6 in 12 years. The last one I had was 2000. Medicine helps me but gives me too many migraine headaches soo often that I had to quit the medicine and it really worked. I didn't have a headache for about 3 years!!! I love it.. My first M headache was during elementary years thought it was part of my syndrome until I discovered it was just a migraine..even if I said the word i'm imaginating it now URGH...that's it for now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 actually tiffany said she is mild, not far from mild, the other end of the spectrum. Re: Hi, I'm new here > > Welcome! I have a 20 year old CHaRgEr and it is a delight to hear from > another adult. is far from as mild as you are. I wonder if her sleep > problems have to do with dreams....Again, welcome. This is a good place > to be. Martha > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Hi to all the new people. This list is growing all the time. Our , cHARGE 20, used to have what the doctors called " night terrors " she had a bad one during a sleep study when she was younger too. I was up many a night with her until she became a teenager. I think she still had them but coped with them on her owh. Her sleep was very very deep but if she was dreaming she was very restless. She does't say much about them now. If she still has night terrors, she doesn't say. Lynn Re: Hi, I'm new here Welcome! I have a 20 year old CHaRgEr and it is a delight to hear from another adult. is far from as mild as you are. I wonder if her sleep problems have to do with dreams....Again, welcome. This is a good place to be. Martha Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 I think I said that was " far from as mild " as . I really don't think I'd confuse this sort of thing! As an editor in a past life, I'm fairly careful with written language. If I was misunderstood, I'm sorry, but I think you should look at what I actually said. Martha > > actually tiffany said she is mild, not far from mild, the other end of the > spectrum. > > Re: Hi, I'm new here > > > > > > Welcome! I have a 20 year old CHaRgEr and it is a delight to hear from > > another adult. is far from as mild as you are. I wonder if her sleep > > problems have to do with dreams....Again, welcome. This is a good place > > to be. Martha > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 7th International > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 , Hi, Welcome to the list, glad you found us. It's always great to have another adult with CHARGE on the list. Yes, I do know a couple of people over 50 who have CHARGE. Weir Mom to Kennedy, 6 yr old with CHARGE, 15, and 13 New Brunswick, CANADA Visit our family on the web http://ca.geocities.com/weirfamilyrogesr lisaweir@... wrote: Hello everyone, Thanks for letting me join this group as I have CHARGE also, but not severe just mild. Let me tell you about me..The CHARGE list I have is I have good vision except tiny blind spot when covering one eye both sides. NO sense of smell, small normal ears. immature for my age but able to live alone in an apartment of my own living independant. I'm working with hearing toddlers at a daycare center with hearing people. The workers think I'mm " normal " like them but don't know I have disabilities. I am deaf but hear very well with cochlear implant. I don't have a sense of smell and worried about food spoilage and stuff that I need to smell. I wonder if there are any adults with CHARGE who can't smell how they handle it?? For many years I have had imaginations during the night that comes at me while i'm in bed. I would sleep then open my eyes something from the ceiling is scary coming down at me. It happens all the time for 20 years!! Does any of you adults with CHARGE have that problem?? or is it just me with my imagination. I was about 12 in bed I saw a black mother cat moving her head sideways it scared me...I noticed she was looking at all the kittens running under my bed then right under the desk was this scary looking cat with teeth showing. I had to turn the lights on and they disappeared. I was staying at a dorm with a peice of clothing in the closet someone had left. I saw it then went to sleep. During my sleep I ended up opening my eyes and saw this peice of clothing get bigger and coming AT me like it was alive moving towards me and scared me!!! that was only 4 years ago. I'm 31 years old now. Do any of you know the reason for me having thsoe scary imaginations while i sleep. im wondering if thats part of the syndrome I have causing it. plus I keep dreaming I become blind because at night my vision gets a bit blurry and dark around the middle of my eyes so i wonder if that's just the syndromme or whatever. Sorry to give you this looooong message. any questions to ask me??? Do you know anybody with CHARGE who is over 50?? Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 Hi and welcome. I have CHARGE and I'm exactly 50. Kay Hi, I'm new here > > > Hello everyone, > Thanks for letting me join this group as I have CHARGE also, but > not severe just mild. Let me tell you about me..The CHARGE list I > have is I have good vision except tiny blind spot when covering one > eye both sides. NO sense of smell, small normal ears. immature for my > age but able to live alone in an apartment of my own living > independant. I'm working with hearing toddlers at a daycare center > with hearing people. The workers think I'mm " normal " like them but > don't know I have disabilities. I am deaf but hear very well with > cochlear implant. I don't have a sense of smell and worried about > food spoilage and stuff that I need to smell. I wonder if there are > any adults with CHARGE who can't smell how they handle it?? For many > years I have had imaginations during the night that comes at me while > i'm in bed. I would sleep then open my eyes something from the > ceiling is scary coming down at me. It happens all the time for 20 > years!! Does any of you adults with CHARGE have that problem?? or is > it just me with my imagination. I was about 12 in bed I saw a black > mother cat moving her head sideways it scared me...I noticed she was > looking at all the kittens running under my bed then right under the > desk was this scary looking cat with teeth showing. I had to turn the > lights on and they disappeared. I was staying at a dorm with a peice > of clothing in the closet someone had left. I saw it then went to > sleep. During my sleep I ended up opening my eyes and saw this peice > of clothing get bigger and coming AT me like it was alive moving > towards me and scared me!!! that was only 4 years ago. I'm 31 years > old now. Do any of you know the reason for me having thsoe scary > imaginations while i sleep. im wondering if thats part of the > syndrome I have causing it. plus I keep dreaming I become blind > because at night my vision gets a bit blurry and dark around the > middle of my eyes so i wonder if that's just the syndromme or > whatever. Sorry to give you this looooong message. any questions to > ask me??? Do you know anybody with CHARGE who is over 50?? > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.