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40 years young, I have been suffering with the following...

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Guest
Guest

40 years young, I have been suffering with the following symptoms on and off for over 20 years and have been diagnosed with silent reflux disease six months ago by the Royal Brompton Hospital in London. Husky voice, lump in throat and a feeling that I have a pet python playing squeeze with my chest, severe breathing problems - symptoms the same as asthma (wheeze, very short of breath, lung function reduces dramatically during an attack which can come on within minutes) Was diagnosed with brittle asthma. I also feel very weak and tired most of the time, especially during an attack, whereby I have become unconscious and rushed to resus. I find that movement and talking/singing makes the symptoms worse and as a result am registered disabled. After numerous test to rule out various things such as vocal cord dysfunction and asthma - which I don't have as such, apparently the acid enters my windpipe and upper airway which also can cause chest infections including pneumonia - silent reflux disease was diagnosed whilst I had a very severe attack during a 24 hour ph probe test. I used to have heartburn but have not had this for many years. After a gastroscopy H. phylori has been ruled out unfortunately as this would have probably made my symptoms worse and improved after antibiotics, my oesophagus was fine and no ulcers. I am on nexium, ranitadine and donperidone to empty my stomach quicker but unfortunately this no longer works so am waiting to see a surgeon with regard to repairing my haetus hernia. :yikes: This may not solve the problem completely but as I have to use combivent nebulisers regularly at home which is the only thing which stops the attacks. I understand that doctors have not come across a case as debilitating as mine but am sure that I can't be the only one.:o I have been in A&E 19 times in the last 16 months!!! Now have a nebuliser at home - as advised by my respiratory consultant.

I have found that if I eat too much I have severe pain in my stomach, vomiting and diahorrea (scuse spelling) so I eat little and often, after advice from a nutritionist I avoid fat, oil, spicy food, caffein (including decaffinated coffee - my gastroenterologist advised me of this one! - mint, chocolate, ginger, leeks, onions, alcohol. I have also lost weight and am down to a healthy weight, I also sleep with the end of the bed up on bricks as lots of pillows just made me slip down the bed!!

I feel for all of you who have such severe pain, the only pain I also get is between my shoulder blades on the inside of my spine which I have been told is oesophageal spasm - paracetamol sorts that out (not allowed asparin or ibuprophen). Hope operation helps and I can have a normal life again smile

[i:5511094956]This message was automatically imported from the original Patient Experience[/i:5511094956]

1 like, 7 replies

7 Replies

  • Guest
    Guest

    Posted

    Hi

    I have just been diagnosed the this week with \"silent reflux\".I had a Larynxoscopy and I had a very bad reaction to the muscle relaxers, which left me extremely week and virtually paralyzed for two days. i was taken to hospital thinking I had had a stroke!!!

    Anyways, I had the feeling of a lump in my throat, adult asthma, back ache, mucus in throat, throat clearing, depression, memory loss, the list goes on.......

    So, I have been prescribed Omeprazole 40mg, which makes me feel crap!!

    I am feeling really down about it and I am relieved someone else is having the same symptoms as me. I too am 40 years old but I feel 80!!

    My first effort is to try and loose some weight and I am defo going to try changing my diet. as far as an Op is concerned I can't go down that channel due to me having severe allergies and a anesthetic is a no-go after what happened to me the other day. Anyways, I hope your Op goes OK. Keep us informed.....

  • killatony
    killatony

    Posted

    I My name is tony. just read your letter about only 40,me to got all that trouble, me to suffer with acid reflux,i,ve been on lansoprazole for over 1and a half years now and dont seem to be geting any better,when i try to exercise it makes my chest tight ,like if your having heartatack its no fun when your swimming and you got to go out of the pool thinking your going to die there and then, me to wish there was a simple cure or somethig.i dont want to take these tablots for the rest of my life.
  • creamflow
    creamflow

    Posted

    Glad I found this site. I am due to have a barium meal next week to check on what my doc thinks is some form of acid reflux. My problems started out last November when I woke up with a sharp pain in my lower chest (center to left hand side). This triggered off pain in my shoulder, back (left hand side right by the spine by the shoulder blade) and also in the back of my neck. I went for a chest x ray, had my heart checked out and was told all was ok. My doc did give me a course of anti-inflammatries as he thought I had a muscular injury of some sought. Soon followed several appointments with a physio which seemed to free me up a bit. More recently I have been unable to drink any hot drinks as I get a pain in my throat / chest, have suffered with excess wind and am belching a lot and passing wind..! Also, I am getting palpatations in my chest (told my heart is ok though), am having breathing problems, and get a pulsing / throbbing sensation in my gut and my legs which generally feel weak also. I've had stool sample results back which are all ok and have not lost weight.

    A friend in work mentioned I may have this or a problem with my throat so I looked it up and cut out certain foods from my diet - tomatoes, chocolate, peppermint, coffee & any hot drinks and have not had any alcohol for 4 weeks. Things have improved since I've done this but I'm still not 100%.

    As I say, I've got a barium test next week but from looking at the posts here all things point to a acid problem.

    Any help or comments on food or things that may help me out or what questions to ask during my test would be most welcome.

    Cheers!

  • Guest
    Guest

    Posted

    ive had pain for 3 years and consultants never seem to know wat goin on (as diff consultant most times) i just would rather see my own..they dont seem to be treatin me..just keep refering me to surgeons, im still waitin on my ph test ,did come bk but wernt told much and said they dnt have main results..been 2 months. i have hiatus hernia, would like to be treated so i can put wieght on.

    anyway barium meal is nice, id have it done again

  • Guest
    Guest

    Posted

    my last post didnt make much sence as was in a rush.. consultants do know what wrong with me ,they just never no about the tests i have had,(unless my own consultant.) they always have to ask me, sure they should look thru my notes before i go in.. it took them my 3rd endoscopy to find a hernia and a barium meal showd i have acid reflux, ph test should say what kind ,

    got to see another surgeon soon to see bout surgery, which dont want as not in pain every day,tho it has affected my social life and cant stay out after 10pm coz will end up belching..especialy if out doors.. have to watch what i eat when i go to gigs and always drink water before and nothin else..

    the only tests i aint had is any enemas,which i have refused in the past.. and scans, apart from abdominal ultrasound which i had.

    and im only 23

  • creamflow
    creamflow

    Posted

    Thanks for the reply. Had my first good day today and felt myself for once!!

    Will let you know how I get on next week or whenever I get the results.

    Cheers, and good luck!

    Creamflow.

  • weebee
    weebee

    Posted

    I was pleased to find this site as 4 months ago I was gong to the gym most days of the week. I am 61 years old but consider myself to be relatively fit. In may of this year I developed a spit and continually wanted to clear my throat .

    I have had an MRI scan, Cat scan andchest/lung Xrays, all of which were clear. I have experienced lots of the symtoms contributore to the site talk about. Back pain, shoulder pain, breathlessness,hoarsness ,buzzing in my head tiredness and most scary of all lightheadedness which makes me feel as if I'm going to faint. I have seen two ENT consultants the latter of whom said that a virus was causing too much acid being produced in my stomach and has prescribed two 20mg doses of Opemrazole daily. I have taken great comfort form the discussions on this site but I am particularly interested if anyone has experienced the lightheadedness/ dizziness.

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