Can anybody identify what is wrong with me?

I wonder whether anybody could give me any information about what I'm going through?

While I am eating, I become breathless, my face and tongue go very numb, I find it unpleasant to continue eating, and I start to cough. Sometimes the cough makes me sick. Eventually, mucus starts coming out of my lungs, and, if I'm lucky, the problem seems to clear up after maybe half an hour or an hour.

This started 2 years ago. I went to a doctor (in Japan), and he did tests and said it was cough variant asthma. He also tested for allergies, and found none. He gave me ventolin which didn't seem to provide any relief, but the problem seemed eventually to fade. But now we are expecting a baby, it has come back with a vengeance, and has made morning sickness much worse. I've lost a kilo and a half in a month.

The attacks are also triggered by cigarette smoke, perfume and mould, though I can't figure why food should provoke them. They are worse with stress.

Can anybody give me any idea what to do about this?

J. Holt.

12 Replies

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  • Elimination and Corection

    Ok have you tired a few things, is the food you eat making you ill if it is try to eliminate it. As being tested for allergies dont not always seem to be the answer. I know that a preservative and e number 250 which is used in bacon and most canned or preserved meats is bad for asthmatics, most vinegar based sauces and dressings are bad too. The old addage is try to keep it fresh and natural, citrus juices can make you wheeze too. Natural vegetable juices can help, too much caffiene can irritate your asthma too.

    Regular vaccuming of carpet floors can help, but be wary of your cleaner it may throw dust back into the atmosphere. Avoid bleach based cleaners as they can bring on an attack, the green cleaners work just as well. try to avoid smelly deodarants, you can get roll ons with no smell. the same with air sprays avoid them.

    Also do you need to lose weight, if not then great. question how long have you been using your inhalers if you have on had them a matter of weeks then take them regularly and give them a chance. if not go back to you gp and they can up the treatment. Hope this helps bigbearkev

  • Hi J. It may be worth trying to find out if 'reflux' could be contributing to this condition, apart from greater research into allergies and effort cleaning!!

    Will watch your thread with interest...

    Twizzle

  • Hi there pipkins,

    Congratulations on your pregnancy, although sorry to hear that you've been feeling so unwell.

    Welcome to Asthma UK, I hope you find us a good source of information and support. Please be aware when you are reading the boards that we have people with a wide range of severities of asthma posting on here, and you may read accounts of poor control, multiple medications, hospital admissions and even Intensive Care admissions. Experiences like these, whilst unfortunately common among users of these boards, are not the norm for asthma. The vast majority of people with asthma can be controlled completely or almost completely with little or no interference with their day-to-day lives once the right combination of medication is found.

    In terms of your own symptoms, what you are describing sounds quite unusual, and I would not be surprised if your doctors were a little baffled. It's impossible (and unsafe) to try to make a diagnosis over the internet, when we do not have access to your medical records and cannot see and assess you properly, but we can try to make some suggestions for you to discuss with your doctors.

    The main thing that springs to mind reading your story is Vocal Cord Dysfunction (VCD). This is not asthma, although it is commonly mistaken for asthma. It is a condition in which there are episodes where the vocal cords, in the voice box, go into spasm and move abnormally, partially closing off the airway and causing cough, difficulty inhaling, noise on inhaling, breathlessness, and a feeling of tightness in the throat or chest. Attacks are often triggered by irritants such as cigarette smoke and perfume, as you mention (although these can be common triggers for asthma too). Attacks can also be triggered by eating, particularly eating sour things.

    Diagnosis of VCD can be difficult, as typically everything appears normal unless you are actually having an episode. Lung function tests can sometimes reveal the problem - but only if a particular test called a flow-volume loop is done. Basic lung function tests (spirometry) commonly done for asthma are usually normal in VCD. The main test for VCD involves looking at the vocal cords with a small fibre-optic telescope which is passed up the nose and down the back of the throat (not quite as unpleasant as it sounds!) - sometimes attempts will be made to provoke an episode of VCD whilst looking at the cords, and if this is positive, this makes the diagnosis.

    The treatment for VCD is quite different from the treatment for asthma, and Ventolin will not help VCD symptoms (although sometimes asthma and VCD can co-exist in the same person, and then Ventolin may be of partial help). The treatment for VCD focuses on breathing exercises to teach you how to prevent the abnormal vocal cord movements - these are usually taught to you by a physiotherapist or speech and language therapist, and are usually very effective.

    Gastro-oesophageal reflux disease (GORD) is another possibility, and this can co-exist with and interact with VCD, as acid refluxing from the stomach up into the throat can irritate the vocal cords and make them more likely to spasm and move abnormally. GORD can also worsen asthma by acid spilling over into the lungs and irritating the lining of the lung. GORD is more common in pregnancy, especially later on in pregnancy when the womb is large and is pressing on the stomach and other organs. Drugs for asthma can sometimes worsen GORD - drugs like salbutamol (Ventolin) that dilate the airways have the side effect of dilating the valve inbetween the stomach and the gullet, allowing acid to reflux. It's possible to have significant reflux without having the typical symptoms of indigestion and heartburn - so-called 'silent' reflux. There are tests that can be done for reflux, but they are quite invasive, and many doctors prefer to diagnose it by a trial of treatment. The main treatment for reflux is a class of drugs called the Proton Pump Inhibitors (PPIs) - lansoprazole, omeprazole, and other -prazole drugs. These drugs are usually very well tolerated with very few side effects, and are usually effective in suppressing acid secretion in the stomach. They are generally considered to be safe during pregnancy.

    Another possibility for breathlessness triggered by eating is aspiration or microaspiration. This occurs when, for some reason, there is a failure of the normal mechanisms that prevent food from being inhaled into the lungs. This can happen because of a mechanical problem in the throat or because of nerve or muscle problems. Inhalation of food into the lungs irritates them and produces cough with sputum and breathlessness. People often experience recurrent chest infections as well. It would be relatively unusual for someone of your age to be experiencing aspiration without any clear cause - it's more common in elderly people who have had strokes and so on or in people who have known nerve or muscle problems like MS. It is something that is worth exploring, though - as with reflux, it can co-exist with both VCD and asthma and interact with them making symptoms worse.

    Clearly, these symptoms are causing you major problems at the moment, and affecting your ability to eat and your weight - a serious issue in pregnancy. I would suggest that you ask for an urgent referral to a hospital specialist. You could ask to see an Ear, Nose and Throat (ENT) specialist, as they normally take care of the diagnosis of VCD, or you could ask to see a respiratory specialist. Hopefully it should not make much difference who you see - the end result should be the same. It's worth mentioning the possibility of VCD and reflux to the specialist when you go.

    Hope this helps, do let us know how you get on, your story has intriged me!

    Take care

    Em H

  • Can vocal chord dysfunction also cause a numb face and a productive cough?

    I should add that we've eliminated almost all cleaners, shampoos and cosmetics from the house (we use bicarb, ethanol, peroxide and additive-free soap), and that we don't eat processed food. We live in humid Japan where the mould is ever-present - even the most virtuous housekeeper could never keep up with the stuff. I have been wondering if surficants in washing up liquid could be causing the problem - we did try to do without them, and (perhaps coincidentally) enjoyed a cough-free few months, but the kitchen became too greasy to cope with.

    JH

  • Hi J,

    Congrats on the bump!

    Perhaps you could try a second opinion from another doctor? Taking a Japanese and English speaking friend along may help if you're not fluent, with a print out of Emily's post. Although from personal experience, using a translator can lead to surreal consultations :).

    I lived in Japan many years ago and found that the best way to tackle mould is to dehumidify by running the air con at least twice a day. The other option is to firefight by wiping down with bleach solution, or using a steam cleaner (chemical free).

    I was rather surprised to read that you're using ethanol and peroxide for cleaning. Both are mild skin and respiratory irritants. Normally one would don gloves and goggles, and preferably use a fume cupboard if handling these chemicals in a lab. So do take care and don't mix accidentally.

    Some safety data aimed at students is contained in the link below (see ethyl alcohol (ethanol) and hydrogen peroxide).

    ptcl.chem.ox.ac.uk/~hmc/hsc...

    All the best,

    Ginny

  • Hi JH,

    VCD can certainly cause cough, which may or may not be productive. If you have a long-term productive cough you should ask your doctor to spend a sputum sample to the lab to see if you have any chronic infection.

    VCD would not normally cause numbness of the face (that's partly why I said your symptoms were a bit unusual!). As far as I am aware, there is no one condition which is a good fit for all your symptoms. This doesn't mean that you don't have VCD or one of the other conditions that I mentioned - diseases rarely read the textbooks, and I think a lot of us here (including myself) can relate to not quite fitting in perfectly with the textbook symptoms.

    The main thing that springs to mind as a cause of numbness around the mouth and in the face is hyperventilation (see thread 'VERY confused' in Medical for a full explanation of this). Inappropriate hyperventilation or over-breathing can cause numbness due to low carbon dioxide levels in the blood. It is possible to be over-breathing as an anxiety response or a learnt response to the breathlessness caused by VCD (or indeed asthma). Any anxiety or over-breathing will then potentially make the vocal cord spasm worse, so the two conditions can again interact.

    In so far as I can judge in this forum, I think this is the most likely explanation for your symptoms - VCD (+/- reflux, +/-microaspiration (less likely)) causing breathlessness, cough, etc, leading to anxiety and over-breathing causing numbness around the mouth and in the face. Yes, that might sound a bit complex and tenuous - but you would not be asking if your diagnosis was a simple one! I should stress this is a guess based on the information you have given us, not a diagnosis, and is intended only to be something for you to potentially discuss with your doctors.

    If you are hyperventilating, it's possible to treat this with breathing exercises taught by a physio, but it would be important to make the underlying diagnosis too, as if it is VCD, the exercises may well differ somewhat. It may be that if you stopped having VCD episodes, you would remove the trigger that was causing you to hyperventilate and solve the problem.

    General relaxation exercises may be of use, as both hyperventilation and VCD can be related to anxiety, and of course the unpleasant sensations associated with an attack would be enough to make anyone anxious. More specific exercises are likely to be needed, though.

    Hope this helps

    Em H

  • Thank you for helpful answers.

    I'll have a look at some VCD exercises and see if they work. I daren't suggest to a Japanese doctor that that might be the trouble, because they go absolutely crazy if you dare to diagnose yourself, especially if it's something they haven't heard of.

    BTW, I don't mix ethanol and peroxide! I spray surgical spirit on the toilet seat and use peroxide-type bleach. I cut out everything else because I was concerned that household chemicals might have contributed to a genetic problem with a baby we lost last year.

  • JH, please don't attempt any sort of breathing exercises, especially those designed for VCD, without proper diagnosis and supervision. Doing the wrong exercises, or doing them incorrectly, can be very dangerous. Also, sometimes in severe VCD exercises do not help completely, and other treatments are required which need to be done by an ENT surgeon. VCD should not be underestimated - it can be serious and needs proper diagnosis and treatment.

    Em H

  • Hi JH,

    I'm sorry for your loss, and wish you all the best for your new baby. I assumed that you had gone back to basics in a rather extreme way by using the active chemicals that are found in very dilute concentrations in cleaning products. Indeed, the combined list would make an interesting cocktail!

    However, your latest post has surprised me slightly as it's hard to imagine any Japanese person (let alone a doctor) going crazy, due to the complex and restrained manners that people observe socially. But perhaps this situation arises under a breakdown in social etiquette, although personally I've only ever managed to drive someone to frostiness. :)

    Regarding the Japanese medical system, I feel that there must exist a mechanism by which doctors review previous diagnoses. During my time in Japan, I would sometimes meet a friend for lunch who is an infectious diseases expert. Anyway, he told me to take care when eating sashimi and other raw products because Japan has some of the highest rates of parasitic infections outside Africa. These sometimes mimic other conditions, and to cut a long story short, a doctor would consider parasites if treatment for a diagnosed complaint wasn't working.

    Japanese society is extremely hierarchical and it is normal to obey the orders of someone higher in the pecking order without question, and one example of this is in the workplace. Doctors are very highly regarded, so it may be normal for a patient to follow a treatment plan in a deferential manner. Logically a doctor would know more about medicine than patients, so perhaps self diagnosis would be frowned upon - but Em H is a doctor, so if you mentioned this if taking her posts along, it might be okay.

    Obviously, what you're going through at the moment is far from satisfactory, so try going back to the doctor who diagnosed cough variant asthma. Apologise (found that 'sumimasen' helps a lot before questioning the opinion of someone higher), then calmly explain that the original problem is still present and Ventolin hasn't helped. See if this approach works. Doctors are sometimes not sure of a diagnosis and in practice might work through a list of most probable conditions, before a specialist referral. They also learn a staggering amount of stuff at med school and post grad training (judging from the ones in my family) so try not to worry about a doctor not having heard of a condition. Hopefully, after going through the system, you'll get there in the end!

    Hope that helps,

    Ginny

  • Hi again JH,

    Just posting to let you know that there is a list of English speaking doctors and dentists in the Tokyo area on the British Embassy website, which might be useful if you live within travelling distance.

    All the best,

    Ginny

  • Aaaah - I've been in Japan a long time, and I know the medical system well. Unfortunately I've had to spend so much time (and money) recently debating with doctors about poorly-done nuchal translucency scans and refusal to provide anaesthesia for surgical procedures that I think I'll have to wait until I get back to Britain for a break.

    Does anybody know a consultant in the North West who might be able to see me? I can't go NHS because I'm not a UK taxpayer (also anybody who might me interested in looking at a cardiac arrhythmia?).

  • Hi! I wanted to PM u but it seems I can't!

    来年日本に行きます!私はUCLAN大学の二年生です。

    日本語とTESOLを勉強しています。どこに住んでいますか。

    ごめんなさい、私の日本語はまだ下手です!

    I just completed my first year so I'm home from uni for the summer.

    It's not as fun speaking Japanese on my own...nobody at home can practice with me because they don't understand LOL!

    Shadz

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