Just want to have a moan to people who understand

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Hi I am 45 and have had Achalasia for 25 years but only diagnosed for around 10. I learnt to live with it for a long time and manage to force food into my stomach with water and fizzy drinks. so much so I never lost weight I am actually over weight but that the stop the anxiety and frustration of not been able to eat normally especially in public, belching and running to toilet to vomit in middle of very meal. On occasions I have really bad days and can't swallow anything at all but I force and force myself making me light headed at times. I have to sleep practally sat up with a sick bowl at my side as I often wake up with little food bolus in my mouth or coughing with everything floating around. I have had one BOTOX done around 14 months ago which eased the symptoms slightly but think they are getting worse again. At the weekend I ate pork and crackling atba wedding and havnt been able to swallow hardly anything since I'm currently on holiday caravaning with my grandsons but this is totally getting me down keep breaking down in tears today and you can tell people about it but nobody really understands I've tried everything I have learnt to what I call have a break through but nothing working fed up and hungry 😭 xx Am sure something is getting through or I did be on my knees by now xx

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  • Posted

    Hi Kaz

    I am also 45 , I was diagnosed with type 1 Achalasia 3 years ago , I first remember symptoms when i was around 21 years old , spent many years back and forward to doctors , being diagnosed with all sorts of nonsense .

    It was not til i was literally choking every night after going to sleep that i finally decided to go private and was diagnosed within weeks . My Doctor of 20 years was extremely embarrassed .

    I have since undergone several procedures , 4 balloon dilatation's and 1 robotic hellers myotomy .

    All of which worked well for a period of time . The hellers stopped the chest spasms and also a lot of the choking during the night . The balloon dilations worked great but for very short periods (Days) . I always have some sort of food or liquid retention in my oesophagus , my throat gets irritated quite often which is annoying . But in general i feel ok , its a very frustrating illness but it is there and we have to make the best of a bad situation . I completely understand you pain , there are some treatments out there that do help . My consultant works at the Broomfield hospital in Chelmsford , Dr Sri Kadirkamanathan . He is one of the most experienced out there . I can send you some contact details if you would like some advice or information to help .

    Its very hard for someone to understand what it is like to constantly battle with your food and drink , I have spent to long letting it get the better of me , I like to think positive now a days , I have this illness and I won't let it get the better of me . There is also a group that meets up in London at the Marriot Hotel in Park Lane . I have been to one meeting which I found really interesting . All the people who attend ( 10 max ) suffer from similar types of Achalasia .

    They also meet at different hospitals here you get the opportunity to ask experienced Doctors questions about treatments etc..

    You can access this group online at ( Meetup ) and look for the Achalasia Meetup group .

    I hope some of this helps 

    Regards

    John 

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  • Posted

    Hi Kaz,

    Our histories are almost a match. Similar periods/ages and I  have just managed somehow as you have.

    More recently though I moved onto a Calcium Channel Blocker  Tildiem on prescription. I was sceptical but after about a 10 days, things started to really improve. I have been taking them for about a year now; and they still help. I take 1 x 60mg tab every morn. The drug opens up blood vessels that in turn relaxes smooth muscle. These are very slow release unlike nitrates etc that work but dont last. I also take a high strength Magnesium tablet at the same time. Vitamin B also has helped me greatly in the past.

    Just a few  things to maybe try... And I wish you the finest of healthy karma!smile Enjoy yr breaksmile 

    N.   

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    • Posted

      Thank you I have heard the calcium channel blocker mentioned somewhere but never heard anyone who has taken it I will speak to my doctor xx
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  • Posted

    Hi Kaz

    Consultants Name - Mr Sri Kadirkamanathan

    Main Practice - Springfield Hospital

                           Lawn Lane

                          Springfield

                          Chelmsford - CM1 7GU

    Secretaries - Sue / Jackie - 01245 234410

    Hope this helps

    John 

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  • Posted

    Hi Kaz I have had Achalasia for about 10 years I don't count but roughly and I feel you I to have to sit up have a sick tub by my side with a screw top. My Esophugus gets so burnt by acid I get dehydrated badly. How do you force food down ? I did read about chugging drinking coke fast forcing food down but that sounds a bit dangerous. I get my buzz from eating chocolate as foods get blocked. I eat pasta you heat with kettle water with flavour and cheese and crackers. I used to blend frozon veg tuna some friut and milk with squash but I need a new blender cause it doesn't blend good anymore. Good luck and I know your pain with this awful depressing disease.

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