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re: Narcoleptic and needing some guidance

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  • lje
    ... Narcoleptic and needing some guidance Posted by: dschmid17 dschmid17@yahoo.com dschmid17 Tue Jan 12, 2010 9:33 am (PST) I have been suffering with
    Message 1 of 5 , Jan 13, 2010
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      ---ORININAL---
      Narcoleptic and needing some guidance
      Posted by: "dschmid17" dschmid17@... dschmid17
      Tue Jan 12, 2010 9:33 am (PST)

      I have been suffering with Narcolepsy for a few years now and have been struggling with my current doctor. I was wondering if anyone has a strong opinion on which doctor to see for Narcolepsy in particular and any other insider tips or suggestions for treating the disease. Thanks!

      ---RESPONSE---
      hello dschmid17. first of all, we have a meeting this sunday, january 17, 2-4pm @ elizabeth balckwell center near riverside hospital. come on out for it + learn much more.

      my opinion of the best n doctor in town by far is tim walter in grove city, www.capitolsleepmedicine.com. after 2 others, he is the one i have stood by for probably 9 years now. brillant!

      many people really like robert clark of columbus community sleep disorders center on south high st. at least i think that is what it is called. ellen? others? speak up. he is very caring + one of the first in town.

      first line of treatment for n these days is provigil + xyrem. this is my cocktail. not perfect but with work it helps when i really need it to. there are many different things that work for different pwn. the best thing to do is learn as much from us who live it as possible + do your research + experiment w your doctors help. a great place is the forums at narcolepsynetwork.org or lots of info at talkaboutsleep.com.

      the doctor i would say to stay away from is samadder of columbussleepconsultants.com. he is simply not ethical + does not have your best interest in mind.

      EVERYONE, i have lost touch with the sleep staff/doctors at OSU. any experince? opinions?

      SUGGESTION FOR MEETING on sunday: bring your own coffee mug to cut down on paper cup waste? i'm turning more + more green as the years go by + think every little thing can be important.

      ...
      laura j evert
      olde north neighborhood of columbus, ohio usa
      tel: 614.784.8823 (leave message) /cell: 330.285.5656 (no voice mail)
      buy handmade! dreamiestgirlever.etsy.com

      N[ART] narcolepsyart: groups.yahoo.com/group/narcolepsyart
      CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP: groups.yahoo.com/group/centralohiosleepdisorders - NEXT meeting sunday, JANUARY 17!
    • appleheadq@gmail.com
      What is xyrem and what kind of dose do you use of provigil? I use adderall for my stimulant to stay awake and trazodone to sleep, but it s not working as well
      Message 2 of 5 , Jan 20, 2010
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        What is xyrem and what kind of dose do you use of provigil? I use adderall for my stimulant to stay awake and trazodone to sleep, but it's not working as well for sleep and doctor thinks I am on way too high of a dose, although I have been on it for 25 years.

        What else are people using for meds for sleep apnea or narcolepsy?

        They told me I have atypical narcolepsy and sleep apnea.


        Any help would be greatly appreciated!

        Scott
        ----- Original Message -----
        From: lje
        To: centralohiosleepdisorders@yahoogroups.com
        Cc: dschmid17@...
        Sent: Wednesday, January 13, 2010 3:44 PM
        Subject: [central ohio sleep disorders] re: Narcoleptic and needing some guidance



        ---ORIGINAL---
        Narcoleptic and needing some guidance
        Posted by: "dschmid17" dschmid17@... dschmid17
        Tue Jan 12, 2010 9:33 am (PST)

        I have been suffering with Narcolepsy for a few years now and have been struggling with my current doctor. I was wondering if anyone has a strong opinion on which doctor to see for Narcolepsy in particular and any other insider tips or suggestions for treating the disease. Thanks!

        ---RESPONSE---
        hello dschmid17. first of all, we have a meeting this Sunday, January 17, 2-4pm @ elizabeth balckwell center near riverside hospital. come on out for it + learn much more.

        my opinion of the best n doctor in town by far is tim walter in grove city, www.capitolsleepmedicine.com. after 2 others, he is the one i have stood by for probably 9 years now. brillant!

        many people really like robert clark of columbus community sleep disorders center on south high st. at least i think that is what it is called. ellen? others? speak up. he is very caring + one of the first in town.

        first line of treatment for n these days is provigil + xyrem. this is my cocktail. not perfect but with work it helps when i really need it to. there are many different things that work for different pwn. the best thing to do is learn as much from us who live it as possible + do your research + experiment w your doctors help. a great place is the forums at narcolepsynetwork.org or lots of info at talkaboutsleep.com.

        the doctor i would say to stay away from is samadder of columbussleepconsultants.com. he is simply not ethical + does not have your best interest in mind.

        EVERYONE, i have lost touch with the sleep staff/doctors at OSU. any experince? opinions?

        SUGGESTION FOR MEETING on sunday: bring your own coffee mug to cut down on paper cup waste? i'm turning more + more green as the years go by + think every little thing can be important.

        ...
        laura j evert
        olde north neighborhood of columbus, ohio usa
        tel: 614.784.8823 (leave message) /cell: 330.285.5656 (no voice mail)
        buy handmade! dreamiestgirlever.etsy.com

        N[ART] narcolepsyart: groups.yahoo.com/group/narcolepsyart
        CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP: groups.yahoo.com/group/centralohiosleepdisorders - NEXT meeting sunday, JANUARY 17!




        [Non-text portions of this message have been removed]
      • Ellen Haider
        Both xyrem and provigil are good meds and are helpful for a lot of people.  There are some, though, that find that provigil does nothing for them.  There are
        Message 3 of 5 , Jan 21, 2010
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          Both xyrem and provigil are good meds and are helpful for a lot of people.  There are some, though, that find that provigil does nothing for them.  There are also people who find the side effects of xyrem to be too much to put up with.  I agree with Laura that your best is to go on to the Narcolepsy Network or the talk about sleep website.
           
          I think the largest recommended dose of provigil is 2 200mg tablets, usually taken with one in the morning and one with lunch.  Just recently I reduced my dose at lunch time to 1/2 a pill because I was running low.  After a couple of days I found that I wasn't any sleepier than on the full dose and was sleeping slightly better, so I've stayed with that.
           
          Xyrem caused me to lose lots of weight, so I ended up going off of it.
           
          My doctor is Robert W. Clark on South High Street.  I think that he is the best diagnostician of all of the sleep doctors in town.  He prides himself on that and gets quite a few patients that fly into Columbus for his diagnosis.  His people skills, though, aren't the best.
           
          All best wishes,
           
          Ellen Haider
          --- On Wed, 1/20/10, appleheadq@... <appleheadq@...> wrote:


          From: appleheadq@... <appleheadq@...>
          Subject: Re: [central ohio sleep disorders] re: Narcoleptic and needing some guidance
          To: centralohiosleepdisorders@yahoogroups.com
          Date: Wednesday, January 20, 2010, 4:15 AM


           




          What is xyrem and what kind of dose do you use of provigil? I use adderall for my stimulant to stay awake and trazodone to sleep, but it's not working as well for sleep and doctor thinks I am on way too high of a dose, although I have been on it for 25 years.

          What else are people using for meds for sleep apnea or narcolepsy?

          They told me I have atypical narcolepsy and sleep apnea.

          Any help would be greatly appreciated!

          Scott
          ----- Original Message -----
          From: lje
          To: centralohiosleepdis orders@yahoogrou ps.com
          Cc: dschmid17@yahoo. com
          Sent: Wednesday, January 13, 2010 3:44 PM
          Subject: [central ohio sleep disorders] re: Narcoleptic and needing some guidance

          ---ORIGINAL- --
          Narcoleptic and needing some guidance
          Posted by: "dschmid17" dschmid17@yahoo. com dschmid17
          Tue Jan 12, 2010 9:33 am (PST)

          I have been suffering with Narcolepsy for a few years now and have been struggling with my current doctor. I was wondering if anyone has a strong opinion on which doctor to see for Narcolepsy in particular and any other insider tips or suggestions for treating the disease. Thanks!

          ---RESPONSE- --
          hello dschmid17. first of all, we have a meeting this Sunday, January 17, 2-4pm @ elizabeth balckwell center near riverside hospital. come on out for it + learn much more.

          my opinion of the best n doctor in town by far is tim walter in grove city, www.capitolsleepmed icine.com. after 2 others, he is the one i have stood by for probably 9 years now. brillant!

          many people really like robert clark of columbus community sleep disorders center on south high st. at least i think that is what it is called. ellen? others? speak up. he is very caring + one of the first in town.

          first line of treatment for n these days is provigil + xyrem. this is my cocktail. not perfect but with work it helps when i really need it to. there are many different things that work for different pwn. the best thing to do is learn as much from us who live it as possible + do your research + experiment w your doctors help. a great place is the forums at narcolepsynetwork. org or lots of info at talkaboutsleep. com.

          the doctor i would say to stay away from is samadder of columbussleepconsul tants.com. he is simply not ethical + does not have your best interest in mind.

          EVERYONE, i have lost touch with the sleep staff/doctors at OSU. any experince? opinions?

          SUGGESTION FOR MEETING on sunday: bring your own coffee mug to cut down on paper cup waste? i'm turning more + more green as the years go by + think every little thing can be important.

          ...
          laura j evert
          olde north neighborhood of columbus, ohio usa
          tel: 614.784.8823 (leave message) /cell: 330.285.5656 (no voice mail)
          buy handmade! dreamiestgirlever. etsy.com

          N[ART] narcolepsyart: groups.yahoo. com/group/ narcolepsyart
          CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP: groups.yahoo. com/group/ centralohiosleep disorders - NEXT meeting sunday, JANUARY 17!

          [Non-text portions of this message have been removed]











          [Non-text portions of this message have been removed]
        • angelina
          hi, i new in here and i been thinking of a new dr if after my next sleep study he cant make his mind up. but after all i am happyu with this group DR KIm of
          Message 4 of 5 , Jun 2, 2010
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            hi, i new in here and i been thinking of a new dr if after my next sleep study he cant make his mind up. but after all i am happyu with this group DR KIm of SLEEP BREATHING INSTITUTE OF COLUMBUS THEY HAVE 3 LOCATIONS number-1-866-297-7704- they few of the girl i know name shasta recpt.

            they are very nivce there, my dr is very understanding or the girls. i had 8 broken ribs and surgery and i had cancel more them 20 times but maybe b/c of my situation where i been sick and broken ribs part , i still have my doct. they always say dont worry just calls us first thing in the moring when they open and they change it.

            so many drs after 4-5 cancel without 24 hrs period sends you on your way. they no longer see ya. the thing is that the dr kinda looking at hypersomic or nacopsy, but also he diag sleep apea., he told me up front need to keep up on things b/c if you fall sleep at the wheeel you are liable in the wreck. so he always be honest and up front.

            i just wish he was still had a part of hospital in the town i lived in. i not sure why he just stay up to the main office and work up in colubus.

            if you cant find one, give dr kim a try, i happy, if cant pin point more specaified since i am apply for disibity. other wise i will keep him. i had him for a sleep dr for 8 yrs. good luck......angel




            --- In centralohiosleepdisorders@yahoogroups.com, lje <dreamiestgirlever@...> wrote:
            >
            > ---ORININAL---
            > Narcoleptic and needing some guidance
            > Posted by: "dschmid17" dschmid17@... dschmid17
            > Tue Jan 12, 2010 9:33 am (PST)
            >
            > I have been suffering with Narcolepsy for a few years now and have been struggling with my current doctor. I was wondering if anyone has a strong opinion on which doctor to see for Narcolepsy in particular and any other insider tips or suggestions for treating the disease. Thanks!
            >
            > ---RESPONSE---
            > hello dschmid17. first of all, we have a meeting this sunday, january 17, 2-4pm @ elizabeth balckwell center near riverside hospital. come on out for it + learn much more.
            >
            > my opinion of the best n doctor in town by far is tim walter in grove city, www.capitolsleepmedicine.com. after 2 others, he is the one i have stood by for probably 9 years now. brillant!
            >
            > many people really like robert clark of columbus community sleep disorders center on south high st. at least i think that is what it is called. ellen? others? speak up. he is very caring + one of the first in town.
            >
            > first line of treatment for n these days is provigil + xyrem. this is my cocktail. not perfect but with work it helps when i really need it to. there are many different things that work for different pwn. the best thing to do is learn as much from us who live it as possible + do your research + experiment w your doctors help. a great place is the forums at narcolepsynetwork.org or lots of info at talkaboutsleep.com.
            >
            > the doctor i would say to stay away from is samadder of columbussleepconsultants.com. he is simply not ethical + does not have your best interest in mind.
            >
            > EVERYONE, i have lost touch with the sleep staff/doctors at OSU. any experince? opinions?
            >
            > SUGGESTION FOR MEETING on sunday: bring your own coffee mug to cut down on paper cup waste? i'm turning more + more green as the years go by + think every little thing can be important.
            >
            > ...
            > laura j evert
            > olde north neighborhood of columbus, ohio usa
            > tel: 614.784.8823 (leave message) /cell: 330.285.5656 (no voice mail)
            > buy handmade! dreamiestgirlever.etsy.com
            >
            > N[ART] narcolepsyart: groups.yahoo.com/group/narcolepsyart
            > CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP: groups.yahoo.com/group/centralohiosleepdisorders - NEXT meeting sunday, JANUARY 17!
            >
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