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  • Nicky Traill
    Hello all I am a newly diagnosed sufferer of Adies-Holmes Syndrome, I have been unable to find much information about it on the net and would appreciate any
    Message 1 of 17 , Oct 9, 2001
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      Hello all
      I am a newly diagnosed sufferer of Adies-Holmes Syndrome, I have been unable to find much information about it on the net and would appreciate any information on cause and, if any, information on how to help me improve my eyesight and consequent headaches. My opthamologist told me the problem will last for at least 12 months is this correct. I have been using a dilute solution of Pilocarpine, but often the drops are sometimes very painful and often worse than the disease! ! !
      I have tried the addresses offered by your group, with very little success and would therefore appreciate any help
      Thankyou Fuzzy
    • MStafford@Prodigy.net
      Hi Nicky, I ve had Adie s since 1992. I also tried the pilocarpine drops. It was nice having your vision improve, even if it was for a short time. That was
      Message 2 of 17 , Oct 21, 2001
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        Hi Nicky,
        I've had Adie's since 1992. I also tried the pilocarpine drops.  It was nice having your vision improve, even if it was for a short time. That was the problem. It got annoying to have your vision change back and forth.  You almost had to wear a little drop bottle around your neck so it was with you all the time.
        Needless to say I don't use the drops anymore. I'm also not bothered by frequent headaches.
        I just try to get my eyes examined once a year. I usually had to take my glasses off to do close work.  Now that I need bifocals, I have to do that a little more often.
         
        Sometimes I don't have a left knee reflex and my left arm does not sweat. This syndrome is supposed to be rare.  Rare enough that they didn't spend any time trying to figure out the cause and long term prognosis.
         
        I've tried to find information. In Lancet's they mentioned a possible indication of Lyme's disease.
        My Opthomologist said it was nothing to worry about.
        Who do you believe.
        ----- Original Message -----
        Sent: Wednesday, October 10, 2001 1:18 AM
        Subject: [adie_syndrome] information

        Hello all
        I am a newly diagnosed sufferer of Adies-Holmes Syndrome, I have been unable to find much information about it on the net and would appreciate any information on cause and, if any, information on how to help me improve my eyesight and consequent headaches. My opthamologist told me the problem will last for at least 12 months is this correct. I have been using a dilute solution of Pilocarpine, but often the drops are sometimes very painful and often worse than the disease! ! !
        I have tried the addresses offered by your group, with very little success and would therefore appreciate any help
        Thankyou Fuzzy


        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
      • MStafford@Prodigy.net
        Roberta, I hope your recovery is going well. Hi Francesco. Margo ... From: Roberta Favarin To: adie_syndrome@yahoogroups.com Sent: Tuesday, October 16, 2001
        Message 3 of 17 , Oct 21, 2001
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          Roberta,
          I hope your recovery is going well. Hi Francesco.
          Margo
          ----- Original Message -----
          Sent: Tuesday, October 16, 2001 5:29 AM
          Subject: R: [adie_syndrome] information

          Hi Nicky,
           
          I'm Francesco from Italy, I'm Roberta's husband, a girl of the Adie's group. Yesterday Roberta had cornea-transplant on her eye with Adie Syndrome, infact she had Cheratoconus on the same eye. A very lucky girls :-( . An other disease wich requests cornea-transplant. About your problem I'm sorry for don't be able to help you so much.
           
          Roberta suffer of Adie from about 20 years (she is 32) but she has no headaches or other heavy problems.
          I have to tell you that her eyesight is 1 on 10 (on eye with Adie and Cheratoconus) and 3 on 10 (on the other eye without Adie but with Cheratoconus). And glasses have no utility for her.
           
          I think she doesn't know what mean see with 10/10, so, I think, she get accustomed to poor eyesight and she never moan about it.
           
          I hope the others can help you a little more.
           
          Bye Francesco
          -----Messaggio Originale-----
          Data invio: mercoledì 10 ottobre 2001 7.18
          Oggetto: [adie_syndrome] information

          Hello all
          I am a newly diagnosed sufferer of Adies-Holmes Syndrome, I have been unable to find much information about it on the net and would appreciate any information on cause and, if any, information on how to help me improve my eyesight and consequent headaches. My opthamologist told me the problem will last for at least 12 months is this correct. I have been using a dilute solution of Pilocarpine, but often the drops are sometimes very painful and often worse than the disease! ! !
          I have tried the addresses offered by your group, with very little success and would therefore appreciate any help
          Thankyou Fuzzy


          Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


          Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
        • bobbikesandantiques
          ... been unable to find much information about it on the net and would appreciate any information on cause and, if any, information on how to help me improve
          Message 4 of 17 , Jun 30, 2003
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            --- In adie_syndrome@yahoogroups.com, "Nicky Traill" <ntraill@t...>
            wrote:
            > Hello all
            > I am a newly diagnosed sufferer of Adies-Holmes Syndrome, I have
            been unable to find much information about it on the net and would
            appreciate any information on cause and, if any, information on how
            to help me improve my eyesight and consequent headaches. My
            opthamologist told me the problem will last for at least 12 months is
            this correct. I have been using a dilute solution of Pilocarpine, but
            often the drops are sometimes very painful and often worse than the
            disease! ! !
            > I have tried the addresses offered by your group, with very little
            success and would therefore appreciate any help
            > Thankyou Fuzzy
            Nicky,
            It has been some while since you wrote this report ,
            I have only just been introduced to this website.
            I find it very interesting hearing everyones experiences and am
            currently investigating ways of consolidating information with a viwe
            to discuussing the final data with an expert.
            You probably have come to terms with the condition and your brain
            will have now compensated for your defective vision.
            I am interested in the changes that occur for no apparent reason I.E.
            my pupil sometimes contracts very quickly causing the pain you
            describe in your report ,what causes this ? does it happen to anyone
            else with this condition ?
            Maybe it could be chemical reaction in the body , if so this might be
            able to be duplicated using medicine , i dont know but would like to
            get more info on it

            Best Regards

            Bob Batey
          • michaela_rees
            Hi to all Does anyone find it unbearable going into shops or places with spot lights and halogen lights, almost everywhere has them now they are the worse for
            Message 5 of 17 , Dec 11, 2006
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              Hi to all
              Does anyone find it unbearable going into shops or places with spot
              lights and halogen lights, almost everywhere has them now they are the
              worse for me instant headaches, muscle tension and dissiness, and
              thats with my sunglasses on and cap, my headaches have not improved
              over four years now and there is nothing that i can take for them that
              helps, but trying to avoid the lights, which is impossible unless i
              stay home all day long with lights really low, its a nightmare and i
              don't why i have it this bad, the eye doctor said i have it to the
              exstreem, and he has not seen anyone with this amount of sensitivity
              to light as me, don't understand why it effects me so bad, i can't
              work because of it, and i want to work and do so much, but i can't,
              because i get really ill from it.
              Its a shame there is know help for us out there, they say its not life
              threatening, but to me it feel like it is, my life is crap and im in
              constant pain.
              Sorry if it a bit depressing.
              Michaela
            • ozzymommy1962
              Michaela I so understand your *pain* with shops and the such. In an office environment - with the flourescent lighting is the worst for me, along with
              Message 6 of 17 , Dec 11, 2006
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                Michaela

                I so understand your *pain* with shops and the such. In an office
                environment - with the flourescent lighting is the worst for me,
                along with department and grocery stores with the same lighting. I
                start my new job in an office on Dec. 12th - tomorrow, and I am so
                not looking forward to it all. I am doing it for the retirement and
                the paycheck. Not only is the lighting and sun bothersome, the
                computer itself can be quite difficult. One thing that adds to my
                *problem* is that I am dyslexic as well. I have had this FUN thing
                called Adies Pupil for 14 years - that I know of. Not a great
                combination at all. I have been dyslexic all of my life and I kind
                of taught myself how to read and all of that of which todays society
                gets special ed classes for. Headaches? I am a walking headache. I
                now take regular generic Ibuprifen at 600 mgs or perscription
                strength at 800 mgs. I only take this when I literally cannot take
                the pain any longer in my head (migranes) and do not want to deal
                with side effects from prescribed migrane drugs. I guess that I have
                delt with pain in my head for so long, that unless I'm almost
                throwing up I'm kind of used to it. People do get used to chronic
                pain. Had lots of scans and mri's and yes, I do still have a
                brain :o) My main wish with this *condition* is that my kids don't
                ever have to deal with it. From what I gather - they don't know if
                there can be a heredity issue with this.

                I guess what it all boils down to ~ for me, is this; though I may
                have my really bad days - to me, it's better than the alternative. I
                also thank God for overcast hazy and rainy days ;o)

                I wish all of you a Very Merry Christmas (even though it is probably
                not politically correct to do so now adays) and a Happy Happy New
                year!
                Kath

                --- In adie_syndrome@yahoogroups.com, "michaela_rees"
                <michaela_rees@...> wrote:
                >
                > Hi to all
                > Does anyone find it unbearable going into shops or places with
                spot
                > lights and halogen lights, almost everywhere has them now they are
                the
                > worse for me instant headaches, muscle tension and dissiness, and
                > thats with my sunglasses on and cap, my headaches have not
                improved
                > over four years now and there is nothing that i can take for them
                that
                > helps, but trying to avoid the lights, which is impossible unless
                i
                > stay home all day long with lights really low, its a nightmare and
                i
                > don't why i have it this bad, the eye doctor said i have it to the
                > exstreem, and he has not seen anyone with this amount of
                sensitivity
                > to light as me, don't understand why it effects me so bad, i can't
                > work because of it, and i want to work and do so much, but i
                can't,
                > because i get really ill from it.
                > Its a shame there is know help for us out there, they say its not
                life
                > threatening, but to me it feel like it is, my life is crap and im
                in
                > constant pain.
                > Sorry if it a bit depressing.
                > Michaela
                >
              • lucy gleeson
                hi michaela, really sorry to hear that, you may have already tried it but if not alternative therapies may well help with the pain - they are also very
                Message 7 of 17 , Dec 12, 2006
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                  hi michaela,
                  really sorry to hear that,
                  you may have already tried it but if not alternative
                  therapies may well help with the pain - they are also
                  very relaxing.
                  as i said i had some phytobiophysics treatment and
                  although it was fairly expensive to have a few
                  treatments, it was well worth it as i found out alot
                  more about why my body was doing odd things than when
                  i went to the eye hospital!
                  take care & happy christmas!
                  lucy
                  x

                  if you look up www.phytob.com - you'll find out more
                  about it.

                  --- michaela_rees <michaela_rees@...> wrote:

                  > Hi to all
                  > Does anyone find it unbearable going into shops or
                  > places with spot
                  > lights and halogen lights, almost everywhere has
                  > them now they are the
                  > worse for me instant headaches, muscle tension and
                  > dissiness, and
                  > thats with my sunglasses on and cap, my headaches
                  > have not improved
                  > over four years now and there is nothing that i can
                  > take for them that
                  > helps, but trying to avoid the lights, which is
                  > impossible unless i
                  > stay home all day long with lights really low, its a
                  > nightmare and i
                  > don't why i have it this bad, the eye doctor said i
                  > have it to the
                  > exstreem, and he has not seen anyone with this
                  > amount of sensitivity
                  > to light as me, don't understand why it effects me
                  > so bad, i can't
                  > work because of it, and i want to work and do so
                  > much, but i can't,
                  > because i get really ill from it.
                  > Its a shame there is know help for us out there,
                  > they say its not life
                  > threatening, but to me it feel like it is, my life
                  > is crap and im in
                  > constant pain.
                  > Sorry if it a bit depressing.
                  > Michaela
                  >
                  >


                  Send instant messages to your online friends http://uk.messenger.yahoo.com
                • michaela_rees
                  Hi Thanks for your emails Im not coping with this very well,do you think the pain can still ease after four years or unlikly to now ?, i couldn t bare to think
                  Message 8 of 17 , Dec 12, 2006
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                    Hi
                    Thanks for your emails
                    Im not coping with this very well,do you think the pain can still ease
                    after four years or unlikly to now ?, i couldn't bare to think of
                    having it like this for the rest of my life.
                    I don't understand why i am reacting to the light so badly, even when
                    lights are really low, it causes even the nerves under my feet to
                    tence, when light enters my eyes its horrible, has anyone have any
                    ideas why it could be affecting me so badly.
                    I had some medication for a few days for back pain, i was afraid to
                    take them for a week, it was like something telling me not too, but i
                    ended up taking them, within three days i had Adies, im just thinking
                    the tablets did this, and it has done something with my nerves, to
                    make me be in so much pain.
                    I should of listened to that inner voice.
                    Michaela
                  • Trish
                    I don t think the Meds brought on the Adie s. It was probably already there thats why you had back pain & headaches which is brought on by the light. My neck
                    Message 9 of 17 , Dec 12, 2006
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                      I don't think the Meds brought on the Adie's. It was probably
                      already there thats why you had back pain & headaches which is
                      brought on by the light. My neck and head are killing me right now.
                      I usually don't suffer much but I've been having a bad spell, mostly
                      brought on by Holiday stress I do believe not to mention all the
                      holiday lights.
                      Good Luck .... Merry Christmas
                      >
                      > Hi
                      > Thanks for your emails
                      > Im not coping with this very well,do you think the pain can still
                      ease
                      > after four years or unlikly to now ?, i couldn't bare to think of
                      > having it like this for the rest of my life.
                      > I don't understand why i am reacting to the light so badly, even
                      when
                      > lights are really low, it causes even the nerves under my feet to
                      > tence, when light enters my eyes its horrible, has anyone have any
                      > ideas why it could be affecting me so badly.
                      > I had some medication for a few days for back pain, i was afraid
                      to
                      > take them for a week, it was like something telling me not too,
                      but i
                      > ended up taking them, within three days i had Adies, im just
                      thinking
                      > the tablets did this, and it has done something with my nerves, to
                      > make me be in so much pain.
                      > I should of listened to that inner voice.
                      > Michaela
                      >
                    • pieterb12
                      Hi Michaela, Ever tried pilocarpine eye-drops? The normal solution of 1 or 2% is much too strong and is really for another purpose ( glaucoom in dutch), but
                      Message 10 of 17 , Dec 13, 2006
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                        Hi Michaela,

                        Ever tried pilocarpine eye-drops?
                        The normal solution of 1 or 2% is much too strong and is really for
                        another purpose ("glaucoom" in dutch), but thru the years my
                        opthalmologist and I tried lighter ones, so nowadays I use 1/16%
                        pilocarpine. (once I tried 1/8% but it was still too strong)
                        I also have pains and stings in my affected eye, especially in summers
                        and also in bright artificial light(also computer-screens), but when I
                        administer the drops a few times a day, my pupil constricts and I
                        don't have to bother for a few hours and my pains are completely
                        reliefed!(and they were severe...).
                        My opthalmologist and pharmacist ensured me that it isn'y harmfull to
                        use the drops on a daily basis... Since the industry standard of
                        pilocarpine is higher, my pharmacist had to look it up and make the
                        drops himself, but nowadays I get new ones every month and keep em in
                        the fridge.
                        Besides good sunglasses for outdoors, when your pain is really coming
                        from excess of light in your eyes, you really should consider this...
                        Good luck!
                        Best regards Pieter (Netherlands)

                        --- In adie_syndrome@yahoogroups.com, "michaela_rees"
                        <michaela_rees@...> wrote:
                        >
                        > Hi to all
                        > Does anyone find it unbearable going into shops or places with spot
                        > lights and halogen lights, almost everywhere has them now they are the
                        > worse for me instant headaches, muscle tension and dissiness, and
                        > thats with my sunglasses on and cap, my headaches have not improved
                        > over four years now and there is nothing that i can take for them that
                        > helps, but trying to avoid the lights, which is impossible unless i
                        > stay home all day long with lights really low, its a nightmare and i
                        > don't why i have it this bad, the eye doctor said i have it to the
                        > exstreem, and he has not seen anyone with this amount of sensitivity
                        > to light as me, don't understand why it effects me so bad, i can't
                        > work because of it, and i want to work and do so much, but i can't,
                        > because i get really ill from it.
                        > Its a shame there is know help for us out there, they say its not life
                        > threatening, but to me it feel like it is, my life is crap and im in
                        > constant pain.
                        > Sorry if it a bit depressing.
                        > Michaela
                        >
                      • michaela_rees
                        ... them that ... summers ... when I ... to ... in ... coming ... this... ... spot ... are the ... and ... improved but trying to avoid the lights, which is
                        Message 11 of 17 , Dec 14, 2006
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                          > > over four years now and there is nothing that i can take for
                          them that
                          > > helps,--- In adie_syndrome@yahoogroups.com, "pieterb12"
                          <pieterb12@...> wrote:
                          >
                          > Hi Michaela,
                          >
                          > Ever tried pilocarpine eye-drops?
                          > The normal solution of 1 or 2% is much too strong and is really for
                          > another purpose ("glaucoom" in dutch), but thru the years my
                          > opthalmologist and I tried lighter ones, so nowadays I use 1/16%
                          > pilocarpine. (once I tried 1/8% but it was still too strong)
                          > I also have pains and stings in my affected eye, especially in
                          summers
                          > and also in bright artificial light(also computer-screens), but
                          when I
                          > administer the drops a few times a day, my pupil constricts and I
                          > don't have to bother for a few hours and my pains are completely
                          > reliefed!(and they were severe...).
                          > My opthalmologist and pharmacist ensured me that it isn'y harmfull
                          to
                          > use the drops on a daily basis... Since the industry standard of
                          > pilocarpine is higher, my pharmacist had to look it up and make the
                          > drops himself, but nowadays I get new ones every month and keep em
                          in
                          > the fridge.
                          > Besides good sunglasses for outdoors, when your pain is really
                          coming
                          > from excess of light in your eyes, you really should consider
                          this...
                          > Good luck!
                          > Best regards Pieter (Netherlands)
                          >
                          > --- In adie_syndrome@yahoogroups.com, "michaela_rees"
                          > <michaela_rees@> wrote:
                          > >
                          > > Hi to all
                          > > Does anyone find it unbearable going into shops or places with
                          spot
                          > > lights and halogen lights, almost everywhere has them now they
                          are the
                          > > worse for me instant headaches, muscle tension and dissiness,
                          and
                          > > thats with my sunglasses on and cap, my headaches have not
                          improved
                          but trying to avoid the lights, which is impossible unless i
                          > > stay home all day long with lights really low, its a nightmare
                          and i
                          > > don't why i have it this bad, the eye doctor said i have it to
                          the
                          > > exstreem, and he has not seen anyone with this amount of
                          sensitivity
                          > > to light as me, don't understand why it effects me so bad, i
                          can't
                          > > work because of it, and i want to work and do so much, but i
                          can't,
                          > > because i get really ill from it.
                          > > Its a shame there is know help for us out there, they say its
                          not life
                          > > threatening, but to me it feel like it is, my life is crap and
                          im in
                          > > constant pain.
                          > > Sorry if it a bit depressing.
                          > > Michaela
                          > >
                          >
                        • michaela_rees
                          Hi I have tried pilicarpine at 1% to 10 saline and that was to strong, i will ask my doctor if i could try a weaker solution, i don t see a eye doctor anymore
                          Message 12 of 17 , Dec 14, 2006
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                            Hi
                            I have tried pilicarpine at 1% to 10 saline and that was to strong, i
                            will ask my doctor if i could try a weaker solution, i don't see a eye
                            doctor anymore they couldn't do anything for me.
                            I do have pain in my back i have had back pain for years ,but never
                            suffered from headaches at all untill i got Adies, so how could it of
                            always have been there, and what does bachache have to do with Adeis a
                            dilated pupil, there is billions with back problems, but Adies is so
                            rear, if Adies has anything to do with back problems or neck problems,
                            there would be more of us, its probably autoimune or a viris or a
                            chemical reaction to our bodies.
                            Has anyone been offered Gabapentine, don't know if i spelt this right,
                            its for fits, its surpose to help nerve pain, i haven't tried it, im
                            just afraid i get horrible sideffects and get more problems with my
                            health, i can't see it helping me, because its only when the light
                            hits my eyes the pain hits, its not going to stop the light entering
                            my eye, when i go in the dark the pain leaves, so i can't see how that
                            will help.
                            Michaela
                          • pieterb12
                            Hi, although Adies could have some origin in auto-immune diseases according to researchers, everybody has different circumstances and symptoms, with some
                            Message 13 of 17 , Dec 14, 2006
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                              Hi,

                              although Adies' could have some origin in auto-immune diseases
                              according to researchers, everybody has different circumstances and
                              symptoms, with some obvious sypmtoms in common that point to Adies'...
                              but that makes Adies's a syndrome rather than a disease...but my
                              common sense and the advice several experts gave me, make me believe
                              that statistically seen, all other symptoms and aches are just as
                              common as in every other random person... for your own benefit and
                              state of mind it is best to cope with the Adies' symptoms and see
                              other things just as common things amongst a lot of people. Although
                              nothing is for sure with Adies', most research points to the fact that
                              it isn't life threatening or disabling, although it can severely
                              bother you of course...
                              But take your eyes for granted as they are and just live your life to
                              the max, by worrying and feeling sorry for your self, life doesn't get
                              easier or more fun and thereby only gets shorter!

                              I would definitely try these pilocarpine solutions I described
                              earlier, because it helped me to get rid of the worst symptoms and
                              pains in my affected eye and that's just the area that is common for
                              sure in all of us people... and I heard several good stories from
                              other affected people who use it.
                              My advice is to make a new appointment with you opthalmologist, you
                              can always ask for that, and discuss the pilocarpine thing. After that
                              you can discuss the drops with your local pharmacist. I can give you
                              the exact recipe, with all the other fluids in it, of my eye drops...
                              for both solutions...
                              So give it a try, and let me know if I should provide you with more
                              info...It helped me and made me from a weak moaring patient to a
                              regular individual, just doing his job and everything a "normal"
                              person does everyday...going out and have fun.
                              Wish you all a jolly good Christmis!
                              Pieter

                              --- In adie_syndrome@yahoogroups.com, "michaela_rees"
                              <michaela_rees@...> wrote:
                              >
                              > Hi
                              > I have tried pilicarpine at 1% to 10 saline and that was to strong, i
                              > will ask my doctor if i could try a weaker solution, i don't see a eye
                              > doctor anymore they couldn't do anything for me.
                              > I do have pain in my back i have had back pain for years ,but never
                              > suffered from headaches at all untill i got Adies, so how could it of
                              > always have been there, and what does bachache have to do with Adeis a
                              > dilated pupil, there is billions with back problems, but Adies is so
                              > rear, if Adies has anything to do with back problems or neck problems,
                              > there would be more of us, its probably autoimune or a viris or a
                              > chemical reaction to our bodies.
                              > Has anyone been offered Gabapentine, don't know if i spelt this right,
                              > its for fits, its surpose to help nerve pain, i haven't tried it, im
                              > just afraid i get horrible sideffects and get more problems with my
                              > health, i can't see it helping me, because its only when the light
                              > hits my eyes the pain hits, its not going to stop the light entering
                              > my eye, when i go in the dark the pain leaves, so i can't see how that
                              > will help.
                              > Michaela
                              >
                            • michaela_rees
                              Hi Peiter Could you send me the solution ingredients, i could ask my doctor if he could give me a prescription to try it, thankyou. I understand what you say,
                              Message 14 of 17 , Dec 15, 2006
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                                Hi Peiter
                                Could you send me the solution ingredients, i could ask my doctor if
                                he could give me a prescription to try it, thankyou.
                                I understand what you say, i am trying to find ways to help, but
                                things are not good, i can't go out and have fun and im struggling
                                even at home with light turned right down, the pain never stops, it
                                eases in dim lighting but starts again when lighting changes or gos a
                                little brighter, it gets so bad my whole body gets tence, i just want
                                something to help control the pain so i can be more normal and do
                                things without having constant headaches.
                                Everybody has it differantly and most can have a fairly normal life,
                                like all illness some have it worse than others, the eye doctor said i
                                had it to the exstreem and did not know why it is so bad, they don't
                                know much about this problem, its probably my body make up or a very
                                low pain threshold, but to me its severe and disabling my life, and i
                                need to find something to help so i can get out and cope with going
                                places and at home.
                                thanks for the infomation i will look into this again.
                                Regard Michaela
                              • pieterb12
                                Hi Michaela, my eyedrops bottle says: -SOL BENZALK ET AC BOR 60 ML (that s only solution fluids and can differ) -PILOCARPINI HYDROCHLORIDUM 37.5 MG
                                Message 15 of 17 , Dec 15, 2006
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                                  Hi Michaela,

                                  my eyedrops bottle says:
                                  -SOL BENZALK ET AC BOR 60 ML (that's only solution fluids and
                                  can differ)
                                  -PILOCARPINI HYDROCHLORIDUM 37.5 MG

                                  the pilocarpine is the most important, as it is the stuff that
                                  constricts your pupil... this ammount is the exact dosis for one
                                  bottle, but as a percentage, it is: 1/16% so "one sixteenth"...
                                  This one works perfectly for me, but as i said earlier, you could also
                                  try 1/8th%, but that's too strong for me...try it out, it helped me
                                  and since it seems a logical fysical thing to me, like a camera with
                                  the lens-opening to big, there's to much light and the picture gets
                                  too bright...same with the eye, so I assume it will work for you...
                                  The first days it's a bit a strange feeling, because you and your eye
                                  are not used to external forces, but later on the feeling gets natural
                                  and you don't notice a thing when you administer the drops, except
                                  that after 15 minutes your pupil gets small en stays for say two
                                  hours... you have to try for your self...
                                  Good luck!
                                  Pieter

                                  PS If nescessary I can ask my pharmacist for extra info on the recipe


                                  --- In adie_syndrome@yahoogroups.com, "michaela_rees"
                                  <michaela_rees@...> wrote:
                                  >
                                  > Hi Peiter
                                  > Could you send me the solution ingredients, i could ask my doctor if
                                  > he could give me a prescription to try it, thankyou.
                                  > I understand what you say, i am trying to find ways to help, but
                                  > things are not good, i can't go out and have fun and im struggling
                                  > even at home with light turned right down, the pain never stops, it
                                  > eases in dim lighting but starts again when lighting changes or gos a
                                  > little brighter, it gets so bad my whole body gets tence, i just want
                                  > something to help control the pain so i can be more normal and do
                                  > things without having constant headaches.
                                  > Everybody has it differantly and most can have a fairly normal life,
                                  > like all illness some have it worse than others, the eye doctor said i
                                  > had it to the exstreem and did not know why it is so bad, they don't
                                  > know much about this problem, its probably my body make up or a very
                                  > low pain threshold, but to me its severe and disabling my life, and i
                                  > need to find something to help so i can get out and cope with going
                                  > places and at home.
                                  > thanks for the infomation i will look into this again.
                                  > Regard Michaela
                                  >
                                • pieterb12
                                  just for sure: 1/16th = 0.0625% 1/8th = 0.1250% ... said i
                                  Message 16 of 17 , Dec 15, 2006
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                                    just for sure:

                                    1/16th = 0.0625%
                                    1/8th = 0.1250%


                                    --- In adie_syndrome@yahoogroups.com, "pieterb12" <pieterb12@...> wrote:
                                    >
                                    > Hi Michaela,
                                    >
                                    > my eyedrops bottle says:
                                    > -SOL BENZALK ET AC BOR 60 ML (that's only solution fluids and
                                    > can differ)
                                    > -PILOCARPINI HYDROCHLORIDUM 37.5 MG
                                    >
                                    > the pilocarpine is the most important, as it is the stuff that
                                    > constricts your pupil... this ammount is the exact dosis for one
                                    > bottle, but as a percentage, it is: 1/16% so "one sixteenth"...
                                    > This one works perfectly for me, but as i said earlier, you could also
                                    > try 1/8th%, but that's too strong for me...try it out, it helped me
                                    > and since it seems a logical fysical thing to me, like a camera with
                                    > the lens-opening to big, there's to much light and the picture gets
                                    > too bright...same with the eye, so I assume it will work for you...
                                    > The first days it's a bit a strange feeling, because you and your eye
                                    > are not used to external forces, but later on the feeling gets natural
                                    > and you don't notice a thing when you administer the drops, except
                                    > that after 15 minutes your pupil gets small en stays for say two
                                    > hours... you have to try for your self...
                                    > Good luck!
                                    > Pieter
                                    >
                                    > PS If nescessary I can ask my pharmacist for extra info on the recipe
                                    >
                                    >
                                    > --- In adie_syndrome@yahoogroups.com, "michaela_rees"
                                    > <michaela_rees@> wrote:
                                    > >
                                    > > Hi Peiter
                                    > > Could you send me the solution ingredients, i could ask my doctor if
                                    > > he could give me a prescription to try it, thankyou.
                                    > > I understand what you say, i am trying to find ways to help, but
                                    > > things are not good, i can't go out and have fun and im struggling
                                    > > even at home with light turned right down, the pain never stops, it
                                    > > eases in dim lighting but starts again when lighting changes or gos a
                                    > > little brighter, it gets so bad my whole body gets tence, i just want
                                    > > something to help control the pain so i can be more normal and do
                                    > > things without having constant headaches.
                                    > > Everybody has it differantly and most can have a fairly normal life,
                                    > > like all illness some have it worse than others, the eye doctor
                                    said i
                                    > > had it to the exstreem and did not know why it is so bad, they don't
                                    > > know much about this problem, its probably my body make up or a very
                                    > > low pain threshold, but to me its severe and disabling my life, and i
                                    > > need to find something to help so i can get out and cope with going
                                    > > places and at home.
                                    > > thanks for the infomation i will look into this again.
                                    > > Regard Michaela
                                    > >
                                    >
                                  • michaela_rees
                                    Hi Pieter Thankyou for info, i will see my doctor, it will be next Friday now before i can see him, so i will ask him for a prescription for the same dose that
                                    Message 17 of 17 , Dec 15, 2006
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                                      Hi Pieter
                                      Thankyou for info, i will see my doctor, it will be next Friday now
                                      before i can see him, so i will ask him for a prescription for the
                                      same dose that your on.
                                      I will be in touch and let you know how i get on, thanks again, you
                                      ahave given me a little bit of hope back.
                                      Hope you have a peaceful and enjoyable Christmas and the same to the
                                      rest of the group.
                                      Kind regards Michaela
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