Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Hi everyone. I have just discovered this group and felt a wave of emotion. I have suffered with acholasia for many years and have real ups and downs with it. there are times when I cope very well and other times when the struggle feels so totally exhausting and overwhelming. To be able to read other people's stories and to be part of somewhere where we can encourage each other is so great as I have never met anyone else with it and most people struggle to really understand how it must be. Like so many of you I find the spasm pain overwhelming but fortunately have found that Nifedipine eases it within 20 minutes. I am sure it dosn't work for everyone but for those of you yet to try it do give it a go. It dosn't have any effect on the motility for me but I am grateful to have something that takes away the pain. I still feel fragile for a few hours but at least I can function and work. It comes in capsule form which you can bite, swallow the ligued and not have to try to swallow the whole capsule. Tastes horrid but hey who cares when the alternative is acute pain! After many years of balloon dilatations I found the courage to have a Heller Myotomy which so far has worked although my gullet generally has such poor motility and the upper end is also in spasm fairly regularly so the relief tends to be limited. I find knowing how my gullet works and what it is doing and what causes the sypmtoms to be so helpful. I know this condition is never going away but every day is a new day. thanks to all of you for your posts. I no-longer feel alone with this. My very best wishes, Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Welcome Kay, and very best wishes to you too. Â You are so right about the importance of not feeling alone. Even better than being a member of this Group is to actually meet another person with achalasia. The day on which I met my " special other " restored something in me that I had felt that I had lost and made me feel normal again. Â I hope that you can have that experience yourself one day. Â Love from Ann (UK) From: Kay Davies <kayf.davies@...> Subject: Thankyou! achalasia Date: Tuesday, 8 February, 2011, 14:53 Â Hi everyone. I have just discovered this group and felt a wave of emotion. I have suffered with acholasia for many years and have real ups and downs with it. there are times when I cope very well and other times when the struggle feels so totally exhausting and overwhelming. To be able to read other people's stories and to be part of somewhere where we can encourage each other is so great as I have never met anyone else with it and most people struggle to really understand how it must be. Like so many of you I find the spasm pain overwhelming but fortunately have found that Nifedipine eases it within 20 minutes. I am sure it dosn't work for everyone but for those of you yet to try it do give it a go. It dosn't have any effect on the motility for me but I am grateful to have something that takes away the pain. I still feel fragile for a few hours but at least I can function and work. It comes in capsule form which you can bite, swallow the ligued and not have to try to swallow the whole capsule. Tastes horrid but hey who cares when the alternative is acute pain! After many years of balloon dilatations I found the courage to have a Heller Myotomy which so far has worked although my gullet generally has such poor motility and the upper end is also in spasm fairly regularly so the relief tends to be limited. I find knowing how my gullet works and what it is doing and what causes the sypmtoms to be so helpful. I know this condition is never going away but every day is a new day. thanks to all of you for your posts. I no-longer feel alone with this. My very best wishes, Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Kay - so glad you found us. It is such a relief to find people who 'get it'. If you don't mind - can you give us a few basics? how old are you, where are you from, etc. We are a big family here - glad you can join us. ~ from NC > > Hi everyone. I have just discovered this group and felt a wave of emotion. I have suffered with acholasia for many years and have real ups and downs with it. there are times when I cope very well and other times when the struggle feels so totally exhausting and overwhelming. To be able to read other people's stories and to be part of somewhere where we can encourage each other is so great as I have never met anyone else with it and most people struggle to really understand how it must be. > > Like so many of you I find the spasm pain overwhelming but fortunately have found that Nifedipine eases it within 20 minutes. I am sure it dosn't work for everyone but for those of you yet to try it do give it a go. It dosn't have any effect on the motility for me but I am grateful to have something that takes away the pain. I still feel fragile for a few hours but at least I can function and work. It comes in capsule form which you can bite, swallow the ligued and not have to try to swallow the whole capsule. Tastes horrid but hey who cares when the alternative is acute pain! > > After many years of balloon dilatations I found the courage to have a Heller Myotomy which so far has worked although my gullet generally has such poor motility and the upper end is also in spasm fairly regularly so the relief tends to be limited. > I find knowing how my gullet works and what it is doing and what causes the sypmtoms to be so helpful. I know this condition is never going away but every day is a new day. > > thanks to all of you for your posts. I no-longer feel alone with this. My very best wishes, Kay > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Hello Kay! It's a wonderful feeling when you actually find a group of Achalasians!!! This group is our life line!!! So very happy to meet you, glad you are doing better now that you have had surgery. Its a daily battle and it's so hard to tell others about the pains we deal with. I had NEVER met another person with my problem until I came here in 2006! I actually met a few of these fellow achalasians, who have filled my life with loving support! It's a great place. We have some of the best brains (Notan) and others! Best Regards, Julee So. Calif. ________________________________ From: Kay Davies <kayf.davies@...> achalasia Sent: Tue, February 8, 2011 6:53:13 AM Subject: Thankyou!  Hi everyone. I have just discovered this group and felt a wave of emotion. I have suffered with acholasia for many years and have real ups and downs with it. there are times when I cope very well and other times when the struggle feels so totally exhausting and overwhelming. To be able to read other people's stories and to be part of somewhere where we can encourage each other is so great as I have never met anyone else with it and most people struggle to really understand how it must be. Like so many of you I find the spasm pain overwhelming but fortunately have found that Nifedipine eases it within 20 minutes. I am sure it dosn't work for everyone but for those of you yet to try it do give it a go. It dosn't have any effect on the motility for me but I am grateful to have something that takes away the pain. I still feel fragile for a few hours but at least I can function and work. It comes in capsule form which you can bite, swallow the ligued and not have to try to swallow the whole capsule. Tastes horrid but hey who cares when the alternative is acute pain! After many years of balloon dilatations I found the courage to have a Heller Myotomy which so far has worked although my gullet generally has such poor motility and the upper end is also in spasm fairly regularly so the relief tends to be limited. I find knowing how my gullet works and what it is doing and what causes the sypmtoms to be so helpful. I know this condition is never going away but every day is a new day. thanks to all of you for your posts. I no-longer feel alone with this. My very best wishes, Kay ________________________________________________________________________________\ ____ Finding fabulous fares is fun. Let FareChase search your favorite travel sites to find flight and hotel bargains. http://farechase./promo-generic-14795097 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2011 Report Share Posted February 10, 2011 Hi Julee thanks so much for replying. To see you describe it as a daily battle has made me cry with relief. I find it a daily and constant struggle and have been made to feel so many times that it shouldn't be so (usually by insensitive doctors or friends who turned out to be not so good friends!). I totally accept I have this (we all have something) but it dosn't make it any easier when eating is such a fundamental part of our existence. I am so grateful to all of you out there. Kay xx > > Hello Kay! > > It's a wonderful feeling when you actually find a group of Achalasians!!! This > group is our life line!!! So very happy to meet you, glad you are doing better > now that you have had surgery. Its a daily battle and it's so hard to tell > others about the pains we deal with. I had NEVER met another person with my > problem until I came here in 2006! I actually met a few of these fellow > achalasians, who have filled my life with loving support! It's a great place. > We have some of the best brains (Notan) and others! > > > Best Regards, Julee So. Calif. > > > > > ________________________________ > From: Kay Davies <kayf.davies@...> > achalasia > Sent: Tue, February 8, 2011 6:53:13 AM > Subject: Thankyou! > >  > Hi everyone. I have just discovered this group and felt a wave of emotion. I > have suffered with acholasia for many years and have real ups and downs with it. > there are times when I cope very well and other times when the struggle feels so > totally exhausting and overwhelming. To be able to read other people's stories > and to be part of somewhere where we can encourage each other is so great as I > have never met anyone else with it and most people struggle to really understand > how it must be. > > > Like so many of you I find the spasm pain overwhelming but fortunately have > found that Nifedipine eases it within 20 minutes. I am sure it dosn't work for > everyone but for those of you yet to try it do give it a go. It dosn't have any > effect on the motility for me but I am grateful to have something that takes > away the pain. I still feel fragile for a few hours but at least I can function > and work. It comes in capsule form which you can bite, swallow the ligued and > not have to try to swallow the whole capsule. Tastes horrid but hey who cares > when the alternative is acute pain! > > After many years of balloon dilatations I found the courage to have a Heller > Myotomy which so far has worked although my gullet generally has such poor > motility and the upper end is also in spasm fairly regularly so the relief tends > to be limited. > > I find knowing how my gullet works and what it is doing and what causes the > sypmtoms to be so helpful. I know this condition is never going away but every > day is a new day. > > > thanks to all of you for your posts. I no-longer feel alone with this. My very > best wishes, Kay > > > > > > > ________________________________________________________________________________\ ____ > Finding fabulous fares is fun. > Let FareChase search your favorite travel sites to find flight and hotel bargains. > http://farechase./promo-generic-14795097 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2011 Report Share Posted February 10, 2011 Hi Kay I too feel that it is a daily battle. Sometimes it is relatively easy, as long as I give myself plenty of time to eat a very good breakfast to give myself the best start for the day. Other days I don't manage to get very much down at all and I can spend the whole day trying to eat. There are usually other factors involved though such as a bad cold. It is great to talk to other achalasians though who understand what you are going through. There is a group of us who meet up in London every few months just to talk. I learn something new every time I meet up with others and I have picked up lots of tips as to how to manage my achalasia better. We are meeting in Central London on Sunday afternoon. If you are interested in meeting others please let me know either for Sunday or another occasion in the future. We are open to all achalasians, so if anyone else can get to London easily and would like to come, please let me know. Wishing you all a good eating day ________________________________ From: Kay Davies <kayf.davies@...> achalasia Sent: Thu, 10 February, 2011 8:07:03 Subject: Re: Thankyou!  Hi Julee thanks so much for replying. To see you describe it as a daily battle has made me cry with relief. I find it a daily and constant struggle and have been made to feel so many times that it shouldn't be so (usually by insensitive doctors or friends who turned out to be not so good friends!). I totally accept I have this (we all have something) but it dosn't make it any easier when eating is such a fundamental part of our existence. I am so grateful to all of you out there. Kay xx > > Hello Kay! > > It's a wonderful feeling when you actually find a group of Achalasians!!! >This > > group is our life line!!! So very happy to meet you, glad you are doing >better > > now that you have had surgery. Its a daily battle and it's so hard to tell > others about the pains we deal with. I had NEVER met another person with my > problem until I came here in 2006! I actually met a few of these fellow > achalasians, who have filled my life with loving support! It's a great >place. > > We have some of the best brains (Notan) and others! > > > Best Regards, Julee So. Calif. > > > > > ________________________________ > From: Kay Davies <kayf.davies@...> > achalasia > Sent: Tue, February 8, 2011 6:53:13 AM > Subject: Thankyou! > >  > Hi everyone. I have just discovered this group and felt a wave of emotion. I > have suffered with acholasia for many years and have real ups and downs with >it. > > there are times when I cope very well and other times when the struggle feels >so > > totally exhausting and overwhelming. To be able to read other people's stories > and to be part of somewhere where we can encourage each other is so great as I > have never met anyone else with it and most people struggle to really >understand > > how it must be. > > > Like so many of you I find the spasm pain overwhelming but fortunately have > found that Nifedipine eases it within 20 minutes. I am sure it dosn't work for > everyone but for those of you yet to try it do give it a go. It dosn't have any > > effect on the motility for me but I am grateful to have something that takes > away the pain. I still feel fragile for a few hours but at least I can function > > and work. It comes in capsule form which you can bite, swallow the ligued and > not have to try to swallow the whole capsule. Tastes horrid but hey who cares > when the alternative is acute pain! > > After many years of balloon dilatations I found the courage to have a Heller > Myotomy which so far has worked although my gullet generally has such poor > motility and the upper end is also in spasm fairly regularly so the relief >tends > > to be limited. > > I find knowing how my gullet works and what it is doing and what causes the > sypmtoms to be so helpful. I know this condition is never going away but every > day is a new day. > > > thanks to all of you for your posts. I no-longer feel alone with this. My very > best wishes, Kay > > > > > > > __________________________________________________________ > Finding fabulous fares is fun. > Let FareChase search your favorite travel sites to find flight and hotel >bargains. > http://farechase./promo-generic-14795097 > > Quote Link to comment Share on other sites More sharing options...
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