I Have Narcolepsy
As i sit here and begin to type,I'm holding back the tears.I don't even know where to begin about how mad i am at this damn diagnosis.When i was a kid i just took naps and drank soda,i was called lazy many times but always knew i wasn't a lazy person.
So now I'm 29,married with 4 children and have been a stay at home mom since day one,when my kids were baby's i was the only one who ever got up with them at night and I'm pretty sure i slept standing up a couple times. With that said,i just thought that that's why i was tired,I'm a new mom that went from sleeping 16hrs a day (at least) to 2hr naps for a whole year. When we had more kids,that was more reasons i was so tired.
Around the age of 24 i did a sleep study at the advice of a friend and they said i didn't have apnia(sp) and didn't know why i was so tired. I,again, just thought i was a lazy ***...years go by 2 more kids come and i was up to 4 cups of coffee in the morning,i averaged 10 sodas a day and was taking up too 7 NoDoze just to stay wake...yes just to stay awake,no jog around the block,just not fall asleep on the couch.
When my husband realised what i was doing he insisted i go to the doctor.(i was also getting bad bad migraines) I did bloodwork,a catscan,more bloodwork went to a migraine doc and finally was sent to a sleep specialist. He looked over all my test results and sent me in to do my 24hr sleep study. As you all know,i wasn't allowed soda,coffee or my beloved nodoze. Well, i slept my 8 hrs and was woken up at 5:30am..took my first nap after breakfast and every once in a while the nurse would come in and say hi to me and ask how i was doing. Took my second nap..then my third...and i asked the nurse why she kept coming in and asking me if i was ok,and she said it was because she could see me fidgeting in bed trying to keep from falling asleep...by the time the 4th nap time came she told me she could already tell there was something wrong,and said she was sorry about my migraine i had.(no caffeine 20hrs)I took my last nap,and when she woke me up i asked if i was falling asleep durring these naps,she said yes,and that i was falling asleep very fast,and staying asleep the whole 40min.
About a week goes by and i go to review the results with my doctor. He says plain and simple,you have SEVIER Narcolepsy,in which i was falling asleep within 3 minuets at each nap time,and that even the last nap in which i had a migraine i fell asleep within 6 minuets...i looked down at the floor and as I'm holding back tears ask him if hes sure,is he 100% sure that that's what i have? He says hes sorry but yes.
Its been about 12 weeks since the doctor said that to me and I'm still in denial about it. He had me try Nuvigil (300mg)(took it for 9 days) and had bad side effects from it,so now I'm on 2 rx's of Ritalin, 20mg,ex twice a day and 10mg twice a day. I cut out coffee,and only take 2 caffeine pills a day now. I'm still sleepy,but way more functional.
My migraine's went away by about 80% and I've lost 30lbs in 3 months(i was 208 so I've got some lbs to lose)...even with the way the meds have helped me I'm still finding myself throwing pity parties(and that's so not me). Its so upsetting that i depend on these meds and i hate that I'm so ******* tired in the mornings. All i want is to wake up with my husband at 6am and talk to him while he gets ready for work,but instead,i sleep till the latest possible time and make myself wake up and get kids off to school.
Why me? Why cant i just be normal? Why the **** do i have to be sooo tired all the time? It makes me so damn mad,so mad that i cant stand it. And to make it even better,my doctor says,it will only get worse with age and that theres no cure,only treatment. I'm pretty sure I'm at the highest dose recommended for adults with the Ritalin and it's pathetic to me that it's not enough,i still find myself yawning during the day and I'm still taking caffeine pills. Not to mention my doctor wants me to try the freaking Nuvigil again...not only did it make me feel like i had the flu,it didn't keep me awake! WHATS THE POINT OF THAT?!?!?! Oh and I'm guessing my doctor thinks my plumber husband makes the big bucks cuz the lovely Nuvigil isn't something either of our insurances pay for and we can barely afford the 2 rx's of Ritalin hes got me on. big breath
All in all,this sucks,this whole sleepy thing sucks! Oh and for the record,if one more person compairs there "I'm tired too" to me saying I'm tired,I'm gonna freak the **** out!
Thanks for letting me vent this to you guys,Kim
So now I'm 29,married with 4 children and have been a stay at home mom since day one,when my kids were baby's i was the only one who ever got up with them at night and I'm pretty sure i slept standing up a couple times. With that said,i just thought that that's why i was tired,I'm a new mom that went from sleeping 16hrs a day (at least) to 2hr naps for a whole year. When we had more kids,that was more reasons i was so tired.
Around the age of 24 i did a sleep study at the advice of a friend and they said i didn't have apnia(sp) and didn't know why i was so tired. I,again, just thought i was a lazy ***...years go by 2 more kids come and i was up to 4 cups of coffee in the morning,i averaged 10 sodas a day and was taking up too 7 NoDoze just to stay wake...yes just to stay awake,no jog around the block,just not fall asleep on the couch.
When my husband realised what i was doing he insisted i go to the doctor.(i was also getting bad bad migraines) I did bloodwork,a catscan,more bloodwork went to a migraine doc and finally was sent to a sleep specialist. He looked over all my test results and sent me in to do my 24hr sleep study. As you all know,i wasn't allowed soda,coffee or my beloved nodoze. Well, i slept my 8 hrs and was woken up at 5:30am..took my first nap after breakfast and every once in a while the nurse would come in and say hi to me and ask how i was doing. Took my second nap..then my third...and i asked the nurse why she kept coming in and asking me if i was ok,and she said it was because she could see me fidgeting in bed trying to keep from falling asleep...by the time the 4th nap time came she told me she could already tell there was something wrong,and said she was sorry about my migraine i had.(no caffeine 20hrs)I took my last nap,and when she woke me up i asked if i was falling asleep durring these naps,she said yes,and that i was falling asleep very fast,and staying asleep the whole 40min.
About a week goes by and i go to review the results with my doctor. He says plain and simple,you have SEVIER Narcolepsy,in which i was falling asleep within 3 minuets at each nap time,and that even the last nap in which i had a migraine i fell asleep within 6 minuets...i looked down at the floor and as I'm holding back tears ask him if hes sure,is he 100% sure that that's what i have? He says hes sorry but yes.
Its been about 12 weeks since the doctor said that to me and I'm still in denial about it. He had me try Nuvigil (300mg)(took it for 9 days) and had bad side effects from it,so now I'm on 2 rx's of Ritalin, 20mg,ex twice a day and 10mg twice a day. I cut out coffee,and only take 2 caffeine pills a day now. I'm still sleepy,but way more functional.
My migraine's went away by about 80% and I've lost 30lbs in 3 months(i was 208 so I've got some lbs to lose)...even with the way the meds have helped me I'm still finding myself throwing pity parties(and that's so not me). Its so upsetting that i depend on these meds and i hate that I'm so ******* tired in the mornings. All i want is to wake up with my husband at 6am and talk to him while he gets ready for work,but instead,i sleep till the latest possible time and make myself wake up and get kids off to school.
Why me? Why cant i just be normal? Why the **** do i have to be sooo tired all the time? It makes me so damn mad,so mad that i cant stand it. And to make it even better,my doctor says,it will only get worse with age and that theres no cure,only treatment. I'm pretty sure I'm at the highest dose recommended for adults with the Ritalin and it's pathetic to me that it's not enough,i still find myself yawning during the day and I'm still taking caffeine pills. Not to mention my doctor wants me to try the freaking Nuvigil again...not only did it make me feel like i had the flu,it didn't keep me awake! WHATS THE POINT OF THAT?!?!?! Oh and I'm guessing my doctor thinks my plumber husband makes the big bucks cuz the lovely Nuvigil isn't something either of our insurances pay for and we can barely afford the 2 rx's of Ritalin hes got me on. big breath
All in all,this sucks,this whole sleepy thing sucks! Oh and for the record,if one more person compairs there "I'm tired too" to me saying I'm tired,I'm gonna freak the **** out!
Thanks for letting me vent this to you guys,Kim
By:
Jeepinmom
Age:
26-30
