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Holmes - Adie's Syndrome

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  • ozzymommy1962
    Hello - I am new to this group and would like to join in. I was diagnosed with Adie s Pupil 14 years ago, but may have had it longer. Just a bit ago, unrelated
    Message 1 of 11 , Jan 9, 2006
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      Hello - I am new to this group and would like to join in. I was
      diagnosed with Adie's Pupil 14 years ago, but may have had it longer.
      Just a bit ago, unrelated to Adie's, I had a CT scan, that led to a
      MRI, that led me to demand from my doc. to refer me to a neurologist.
      (my doc's relpy to my MRI was - every body is different)The
      neurologist diagnosed me with Holmes Adies Syndrone. I honestly don't
      know how long I have had this syndrome because I have obviously been
      misdiagnosed for years. My symptoms are getting on the severe side as
      the years pass - though I just deal with them and go on with life. I
      have been told I have Fibromyalgia (excuse the spelling if incorrect)
      also been told that everything is stress or stress related, looked at
      like I was insane, and told by doc.s that they had no idea what I was
      talking about. I honestly am not very trusting in the medical
      rofession since they seem to make so many mistakes with me. I still
      need to go back and read all of the messages in this group to get up
      to speed, and also learn as much as I can about this *syndrome*. I am
      doing as much research as possible in these last couple of days
      since being diagnosed. The neurologist did say that he wants to see
      me in six months to ess if I get worse and how much worse I get. He
      did say that I will probably be using a cane one day. I just cannot
      relate to that and am going to fight this thing.
      Does anyone out there know anything about Holmes - Adies
      Syndrome other than what can be read on the internet? I've got a lot
      of work to do, but was just wondering. How bad does this really get???
      Thanks For Listening!
    • michaela_rees
      Hi Sorry but i don t know your name. I don t know anything more about adeis than whats already on the internet and group, there isn t anything much about this
      Message 2 of 11 , Jan 11, 2006
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        Hi
        Sorry but i don't know your name.
        I don't know anything more about adeis than whats already on the
        internet and group, there isn't anything much about this condition,
        and if you do find something it seems just a mild sort of problem,
        to some people it is, but to others it really can be awful.
        I myself have have terrible symptoms which nothing will help, it
        goes on every day, the constant headaches and nausea, the light
        effects me all the time, i don't get out at night because the car
        lights hurt so much, and lighting in and around places are to
        bright.
        Shops are a nightmare too, there to bright even when i have my
        sunglassses on and cap, so most days is a battle for me with adeis,
        i was also told years ago i had fibramyalgia, but doctors can put
        names to any aches and pains, i don't think they fully know much
        about that illness either.
        I have been suffering alot of emotional stress before adeis, so i do
        wonder if that contrabuted to me having the illnesses that i have.
        You say your symptoms are getting worse, what are your symptoms from
        adeis?, how are you suffering and what do you do to help your
        suffering?.
        I have been to doctors and eye doctors, and they can't offer
        anything but tablets which do not help me, so i find there is no
        point going back to them for help any more, because there is no help
        for me ive tried everything, so now i just take each day and get
        through it the best i can, very isolated most of the time, i do
        things i can do and try now not to dwell to much on the things i can
        no longer do, which does make my world very small, i do feel i get
        depressed and fed up, but know that i have to keep going and hoping
        that things will improve one day and it won't always be this bad, we
        have to keep hoping and never lose hope no matter how bad we are
        feeling, when i feel so bad i remember there is always other people
        with a worse illness and feel worse than me, we have to keep
        fighting, we are stronger then we think, we have to keep pushing
        through our suffering and never lose our hope on getting better.

        KInd regards
        Michaela
      • Rita Cullum
        Michaela, My name is Rita. Adies can be painful and alot more. You basically have to try to heal yourself. And you can I believe, or at least get to a point
        Message 3 of 11 , Jan 11, 2006
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          Michaela,

          My name is Rita. Adies can be painful and alot more.
          You basically have to try to heal yourself. And you
          can I believe, or at least get to a point where things
          don't bother you so bad. Wear sunglasses when you are
          in daylight. And since sunglasses come in different
          stenghts, try a lighter one for night. I will be
          praying for you. I know how the headaches can be so
          painful and nothing seems to help, but I have faith
          that you will find something to ease the pain. Know
          that there are others who are just as lost as you are
          and can feel everything you are feeling. Don't get
          discouraged!!! There are plenty of us on this web
          sight. Take care and try to relax.
          Rita

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

          > Hi
          > Sorry but i don't know your name.
          > I don't know anything more about adeis than whats
          > already on the
          > internet and group, there isn't anything much about
          > this condition,
          > and if you do find something it seems just a mild
          > sort of problem,
          > to some people it is, but to others it really can be
          > awful.
          > I myself have have terrible symptoms which nothing
          > will help, it
          > goes on every day, the constant headaches and
          > nausea, the light
          > effects me all the time, i don't get out at night
          > because the car
          > lights hurt so much, and lighting in and around
          > places are to
          > bright.
          > Shops are a nightmare too, there to bright even when
          > i have my
          > sunglassses on and cap, so most days is a battle for
          > me with adeis,
          > i was also told years ago i had fibramyalgia, but
          > doctors can put
          > names to any aches and pains, i don't think they
          > fully know much
          > about that illness either.
          > I have been suffering alot of emotional stress
          > before adeis, so i do
          > wonder if that contrabuted to me having the
          > illnesses that i have.
          > You say your symptoms are getting worse, what are
          > your symptoms from
          > adeis?, how are you suffering and what do you do to
          > help your
          > suffering?.
          > I have been to doctors and eye doctors, and they
          > can't offer
          > anything but tablets which do not help me, so i find
          > there is no
          > point going back to them for help any more, because
          > there is no help
          > for me ive tried everything, so now i just take each
          > day and get
          > through it the best i can, very isolated most of the
          > time, i do
          > things i can do and try now not to dwell to much on
          > the things i can
          > no longer do, which does make my world very small, i
          > do feel i get
          > depressed and fed up, but know that i have to keep
          > going and hoping
          > that things will improve one day and it won't always
          > be this bad, we
          > have to keep hoping and never lose hope no matter
          > how bad we are
          > feeling, when i feel so bad i remember there is
          > always other people
          > with a worse illness and feel worse than me, we have
          > to keep
          > fighting, we are stronger then we think, we have to
          > keep pushing
          > through our suffering and never lose our hope on
          > getting better.
          >
          > KInd regards
          > Michaela
          >
          >
          >
          >
          >


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        • michaela_rees
          Thanks Rita I do all the things you have suggested, but its still very bad. On the Adeis side does anyone get pain and tenderness in the temple area, and
          Message 4 of 11 , Jan 12, 2006
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            Thanks Rita
            I do all the things you have suggested, but its still very bad.
            On the Adeis side does anyone get pain and tenderness in the temple
            area, and tender to touch?
            Rita how does adeis effect you, is there been any improvement, from
            the time you got it? and what have you been doing to help yourself in
            trying to recover.
            Thankyou for your prayers.
            Kind regards
            Michaela
          • linja@aol.com
            Sorry to hear that you are suffering. Micheala, you mentioned emotional stress. I ve never heard that stress causes Adie s, but I ll bet it can make it feel
            Message 5 of 11 , Jan 12, 2006
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              Sorry to hear that you are suffering. Micheala, you mentioned emotional stress. I've never heard that stress causes Adie's, but I'll bet it can make it feel worse.  I've been reading about how it aggravates back pain so I'll add my two cents here.

              Stress makes your muscles tighten involuntarily. And the tightness keeps blood from reaching tissues to help repair them, so whatever pain you have does not go away. So tension contributes to headache, back pain, etc.

              Often we can't avoid stress. But we can help ourselves by taking time to relieve stress. Think about the things that help you relax or at least feel better and do some of them at least several times a day.  This can be listening to upbeat music, taking a brisk walk, praying or meditating, doing yoga, getting a massage, enjoying a sauna or hot tub... whatever helps you personally. You deserve to feel better.

              Also Micheala, you mention fibromyalgia. Have you read "From Fatigued to Fantastic" by Dr. Jacob Teitelbaum. I borrowed a copy from the library and it has a good chapter on fibromyalgia.

              Take care.
              Linja

              michaela_rees wrote:
              I have been suffering alot of emotional stress before adeis, so i do
              wonder if that contrabuted to me having the illnesses that i have.
            • michaela_rees
              Thankyou Linda I will try to do more things to relax, i think your right about stress not causing Adeis, because there are so many people under stress, so
              Message 6 of 11 , Jan 12, 2006
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                Thankyou Linda
                I will try to do more things to relax, i think your right about stress
                not causing Adeis, because there are so many people under stress, so
                Adeis would be more common, i agree stress will make what ever
                comdition you have worse.
                But i can't seem to stop the tension Adeis causes me, the lights just
                tence up my muscules in my head and i can't stop that, and then i get
                terrible headaches and sickness constantly, only by getting out of
                light into a darkend room the headaches start to ease off, but i
                cannot stay in a dark room all day to prevent this happening, so i
                just have to get the headaches if i have to get on wih my life, it is
                terrible but there is nothing else i can do about it.
                Thankyou all for writing to me and giving me your support and idea's.
                Kind Regards
                Michaela
              • jm44dog@aol.com
                Michaela: Why don t you try the PIlocarpine drops? Try them--they may be just what will ease many of these symptoms you are experiencing--I hate to see you
                Message 7 of 11 , Jan 13, 2006
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                   Michaela:
                   
                  Why don't you try the PIlocarpine drops?  Try them--they may be just what will ease many of these symptoms you are experiencing--I hate to see you suffer so, when there is a drug that may help you.  As I have said before, I have used Pilocarpine since I was diagnosed 18 years ago--it took some getting used to, but I persevered and I am so glad I did--why not see an Opthamologist and ask to try them--they truly might help you.
                   
                  Julie Marsh
                   
                  -----Original Message-----
                  From: michaela_rees <michaela_rees@...>
                  To: adie_syndrome@yahoogroups.com
                  Sent: Fri, 13 Jan 2006 07:44:06 -0000
                  Subject: [adie_syndrome] Re: Holmes - Adie's Syndrome

                  Thankyou Linda
                  I will try to do more things to relax, i think your right about stress 
                  not causing Adeis, because there are so many people under stress, so 
                  Adeis would be more common, i agree stress will make what ever 
                  comdition you have worse.
                  But i can't seem to stop the tension Adeis causes me, the lights just 
                  tence up my muscules in my head and i can't stop that, and then i get 
                  terrible headaches and sickness constantly, only by getting out of 
                  light into a darkend room the headaches start to ease off, but i 
                  cannot stay in a dark room all day to prevent this happening, so i 
                  just have to get the headaches if i have to get on wih my life, it is 
                  terrible but there is nothing else i can do about it.
                  Thankyou all for writing to me and giving me your support and idea's.
                  Kind Regards
                  Michaela   
                  
                  
                  
                  
                  
                   
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                • michaela_rees
                  Hi Julia I have tried pilicarpine, but i still got the pain and when it srunk my pupil down, i got pain from that too and also i was getting tightness across
                  Message 8 of 11 , Jan 13, 2006
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                    Hi Julia
                    I have tried pilicarpine, but i still got the pain and when it srunk
                    my pupil down, i got pain from that too and also i was getting
                    tightness across my chest every time i used it which took hours to
                    ease off, so im not sure if i should try them again.
                    what kind of symptoms did you first get from using them and how long
                    before you got more use to them.
                    KInd Regards
                    Michaela
                  • jm44dog@aol.com
                    I mostly had unequal vision in both eyes while using the pilocarpine in my Adie s right eye--what strength PIlocarpine did you use? I have gotten the best
                    Message 9 of 11 , Jan 13, 2006
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                       I mostly had unequal vision in both eyes while using the pilocarpine in my Adie's right eye--what strength PIlocarpine did you use?  I have gotten the best results from Pilocarpine Hci 2% although I started at 4% and then went to 1%, then finally after many years, settled in at 2%.  I never had any tightness in my chest or anything like that. I actually use the drops now in both eyes because then they start out the same--with the pupils roughly reduced the same amount by the drops, and as the drops wear off, my vision pretty much remains the same in both eyes. Probably not the solution for everyone, but it has worked for me.  I do recall feeling some discomfort initally when using the drops--that I promise goes away adter your eye becomes used to Pilocarpine.   A good opthamalogist can work with you on finding the right strength for you.
                      -----Original Message-----
                      From: michaela_rees <michaela_rees@...>
                      To: adie_syndrome@yahoogroups.com
                      Sent: Fri, 13 Jan 2006 08:19:34 -0000
                      Subject: [adie_syndrome] Re: Holmes - Adie's Syndrome

                      Hi Julia
                      I have tried pilicarpine, but i still got the pain and when it srunk 
                      my pupil down, i got pain from that too and also i was getting 
                      tightness across my chest every time i used it which took hours to 
                      ease off, so im not sure if i should try them again.
                      what kind of symptoms did you first get from using them and how long 
                      before you got more use to them.
                      KInd Regards
                      Michaela
                      
                      
                      
                      
                      
                       
                      Yahoo! Groups Links
                      
                      <*> To visit your group on the web, go to:
                          http://groups.yahoo.com/group/adie_syndrome/
                      
                      <*> To unsubscribe from this group, send an email to:
                          adie_syndrome-unsubscribe@yahoogroups.com
                      
                      <*> Your use of Yahoo! Groups is subject to:
                          http://docs.yahoo.com/info/terms/
                       
                      
                      
                      
                    • pesuwue
                      --Hallo Michaela, I had very similar symptoms and now I use a very low dosage. I get drops from my pharmacy that contains 2 ml Pilocarpin 1% drops in 8 ml of
                      Message 10 of 11 , Jan 13, 2006
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                        --Hallo Michaela, I had very similar symptoms and now I use a very low
                        dosage. I get drops from my pharmacy that contains 2 ml Pilocarpin 1%
                        drops in 8 ml of Dry-Eye-Drops. It works very fine for me, I normally
                        uses them twice a day, but I needed some trying to find the right
                        dosage. Hope I can help you with my experiences,
                        Petra
                        - In adie_syndrome@yahoogroups.com, "michaela_rees"
                        <michaela_rees@y...> wrote:
                        >
                        > Hi Julia
                        > I have tried pilicarpine, but i still got the pain and when it srunk
                        > my pupil down, i got pain from that too and also i was getting
                        > tightness across my chest every time i used it which took hours to
                        > ease off, so im not sure if i should try them again.
                        > what kind of symptoms did you first get from using them and how long
                        > before you got more use to them.
                        > KInd Regards
                        > Michaela
                        >
                      • michaela_rees
                        Hi Petra I used a low dose of pilocarpin yesterday, and i did t feel as bad this time, i think it helped me a bit outside in the natural light, but when i went
                        Message 11 of 11 , Jan 15, 2006
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                          Hi Petra
                          I used a low dose of pilocarpin yesterday, and i did't feel as bad
                          this time, i think it helped me a bit outside in the natural light,
                          but when i went into the shop with alot of halogen lights i started to
                          get really bad headaches so i left the shop.
                          I find halogen lights terrible, i can't go into shops with these
                          lights, they make me really ill and in so much pain and thats with
                          sunglasses and a cap on.
                          Does anybody else find these lights intolerable? there almost in every
                          shop these days, the shops are getter brighter with all these spot
                          lights its becomming more impossible to go in them.
                          Im thinking of shopping from catalogues for my clothes, i think it
                          will be less stressful.
                          Regards to all
                          Michaela
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