Posted , 4 users are following.
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
[i:5511094956]This message was automatically imported from the original Patient Experience[/i:5511094956]
1 like, 7 replies