Hi Guys, I am afraid I have been away for some time, I do read posts and answer the odd one where I feel I can contribute but have not been too active here. No excuse - just work and health getting in the way and I miss you all loads.
I have a question though that I have tried to research for months and I am getting no where from the research or the medics.
It started with a really nasty chest infection in January this year which required antibiotics and 2 weeks off work. This left me with a barking cough which would not go and is intermittent throughout the day (it doesn't wake me at night).
At the start of June after 5 months of trying everything and several trips to the GP the cough suddenly got a lot worse and the top of my chest was very sore. The GP dx bronchitis and gave me a steroid inhaler. This helped a lot and stopped the cough being as harsh or as frequent but after 2 weeks I had to stop using it because it had caused a bad case of thrush in my mouth.
I still have the cough, it is now 7 months, as well as things I have described I have tried every type of cough medicine on the shelves here, extra medication for gastric reflux (just in case), a steroid nasal spray in case of post nasal drip. My peak flow is fine and the GP says not asthma because of that.
I am now desperate, I cough about 12 - 14 times a day that doesn't sound much but each session can last several minutes, it hurts my ribs and stomach, I am left with tears streaming, red in the face, I have had to step up the use and size of tena lady pads (as you can imagine - but that's another story). I have too leave meetings at work to have a coughing fit.
I am totally exasperated and exhausted and at my wits end as to what to try next. We have even bought an air filter which cost £160 for the bedroom in case it is an allergy with no luck.
The GP last week after my # visit wondered if it might be that my aspiration was not quite up to par because of the MS she said that if it was at 97% we would not be able to measure it but it woudl cause me problems.
My MS team said - no - silent aspiration woudl affect me EVERY time I tried to eat not just occasionally and not when I wasn't eating, they think I have just been unlucky!!!! This is definitely not silent I could assure her!
I am now desperate it sounds minor but after 7 months of a hacking cough which is exhausting added to all my other sx and the usual fatigue you all no so well and trying to work I am desperate for it to just stop, So any suggestions welcome - happy to try anything at this point :(
I have not said hello before but I am also from Uk (Glos.) and recenlty dx'd with RRMS in March this year.
I really feel for you and cannot add any helpful suggestions as to where you should go from here and the only thing I could suggfest tentatively is have you thought about seeing a naturopath....it depends what you think about homeopathy etc.
Your sx do not sound minor at all and on top of all the usual things we have to put up with in our daily lives with MS, having this cough must make you feel completely fed up. Have you tried regular steam inhalations with something like eucalyptus or Vick?
I really hope that some of the other medical folks on this wonderful site can give you some other ideas but I just wanted to say I can completely understand why you feel so desperate..we rely on our medical doctors and MS Team to help us when we are facing another challenge...and although they have tried to nothing seems to have helped you and this is tough.
So I think you are perfectly entitled to feel let down and disheartened and I am really sorry that you are having such a difficult time
I do not have much advice, but I did want to ask if you are using a humidifier? My youngest son had a horrible cold and still has the cough at night. The first night of the cough my husband thought our son was having an asthma attack (he does not have asthma). But, the coughing was so bad he could not catch his breath for almost 5 minutes! Since that happened, we set up a cool mist humidifier. It is actually on a shelf about 2.5 feet above his head, and the mist goes right down on to him. It has really helped and now he is only have one to 2 coughing fits during the day.
I'm not an MD, so this is just my speculation, but I'm not sure aspiration would affect you *every* time you eat. Think about it this way: there must be degrees of MS related aspiration, just as there are with other MS issues. Some worse and more frequent, and some better. Some problems are just intermittent.
I would pursue this a bit more if it was me. But I'm also curious to see what others think about it.
Actually I used to be a certified nursing assistant so I know alittle bit about aspiration since I had to evaluate the elderly eating and report back to the nurse. Stephanie is right..to an extent.
Aspiration does not happen every time you eat...because you always eat different things. Take notice to what you eat and if it makes you cough or not. You can have aspiration with drinking lemonade or soup but eat a soft pretzel and be fine. that is because the consistency is different.
Start making a food journal and if you experience the coughing/runny nose/water eyes/unable to catch your breathe...after certain foods then you possibly could have aspiration. Try small amounts of different consistencies and write down what you ate/drank and your symptoms afterwords...
HOWEVER....there is a difference between coughing because of aspiration and aspiration because of coughing...lol...when you cough all airways open up trying to get rid of the agent causing the cause. This leaves the airways suseptable to food or drink to the lungs which causes more coughing which then causes slight aspiration. Think of it as the famous saying...It went down the wrong pipe!
So start expeirementing with foods and drinks while you arent coughing and make note of that...If lemonade gets you to coughing what you need to do is thicken it up. You can buy a thickening agent at the store but if you find that you cant do that then make soup and put some corn starch in it to thicken it up and try it when you arent coughing..see if that helps. If you notice a big difference and lack of coughing it very well could be aspiration.
If it is aspiration it will take you awhile to stop coughing because of all the agents of food and drink you accumulated in your lungs over the past months ...so dont expect to stop coughing instantly. Your body will keep making you cough until it is free of all irritants.
Did your doctor ever test you for walking phuemonia? That could be a possiblity. With MS your immune system is lower so it is not uncommon to hear of developing infections like that easier than others.
I hope i helped some way. Good luck and keep us posted!
btw I havent heard you mention trying breathing treatments. I would suggest this to your doctor. They are painless and you are able to do them at home. Its a little machine that has some medicine in it that you sit and it basically pumps oxygen and medicine at the same time into your lungs.
Its like an inhaler and oxygen mask in one. I have helped others use them, set them up, watch them and my sister uses one for her asthma and it helps alot.
Thanks to both of you for this feedback, I must say I have noticed that dry foods cause me issues but if iy were aspiration would it make me cough even when I am not eating / drinking. i.e just out of the blue?
I sometimes start to cough just as a take a breathe in to speak too or go from a cool / hot environment to the reverse.
I will start making notes though as after 7 months I am so exhausted it is crazy.
I would say yes to coughing out of blue because if there is still stuff in your lungs then it would just to force it out. If dry foods cause coughing, I would then suggest instead of aspiration perhaps it may be something like difficulty swallowing. Perhaps the muscles in your throat are not working as well anymore.
As for coughing when changing environments then I would say it is just difficult for your lungs to adjust..I really dont have that much knoweldge in that subject to suggest a certain reason for this or what it may be from.
I hope you find an answer soon though! Good luck and keep us posted! I am more than happy to try and help you find an answer!!
Thanks so much for the info and offer of help I will keep you posted as I try to find out. I have just had another awful day at work and I am thinking I may need to take some time off again it has caused me so many problems today.
Any chance you can get a consult to an allergist or pulmonary specialist? Despite what your GP says, I think this sounds like asthma or asthmatic bronchitis, or bronchospasms from environmental irritations. The fact that the steroid inhaler was helpful but cough syrups and simple humidity aren't, would support that type of diagnosis.
Asthma can be hard to diagnosis when you aren't gasping for breath on a regular basis. My granddaughter had a persistent cough that disrupted her sleep and classroom activities frequently without other signs of illness. Sometimes as she was coughing I would hear a wheeze as she took a deep breath between long runs of coughs. Other times it was a single cough every few minutes.
I kept after my daughter to investigate the cause as I knew that this type of cough is sometimes the only sign of asthma in children. It was a pediatric allergist that finally diagnosed her. Now that she takes a maintainence steroidal inhaler she is breathing well enough to be on a swim team. If she gets a cold though, it can trigger increased coughing that lets us know she needs some extra medicine for the asthma.
Also, thrush can be a common complication of inhaler use. I'm interested to know if you were instructed to rinse your mouth after each inhaler use. A simple swish-and-spit type rinse with salt water (or even plain water) after using any steroid containing inhaler will go far in preventing thrush.
Since a steroid inhaler helped before, I wonder if your GP would be willing to prescribe another trial use. What could it hurt since he doesn't seem to have anything else to offer? Really, I wonder how some of these docs can sleep at night when they repeatedly send their patinets away with no plan for diagnosis or treatment.
Hope you are breathing freely and quietly soon.
Thanks Mary I think I will need another trip back to the GP soon
In reply to your questions:
No I was not advised to rinse out but I am aware now - thanks again to you guys!
I have just been given an 'as and when' inhaler that I can use up to 4 times a day when I start coughing - at the moment, I am still trying to get used to it as it often makes me heave if I try to use it, as instructed - whilst I am coughing but when I get it just right it does shorten the spasm - that has to be worth a trip back.
Plus when I saw my GP yesterday and she prescribed this she was so rude it was crazy - when I told her I was struggling with all the MS stuff and working whithout the addition of this problem, she gave me a lecture on how we all had to just 'get on with it' and then proceeded to tell me about her personal situation - nasty divorce, 3 children to support, had to come back to work out of retirement. She went on so much that I asked her if she wanted to swap places and tell me her problems instead - I must have sounded quite sarcastic but it was a rediculous situation.
She then shrugged her shoulders and replied - no I just wanted to show you that you are not the only one struggling to work - well as if I didn't know that - I was tempted to say - but I am the only one in theis room with MS!!!
Added to which it seems I am on the verge of needing to self catheterise - had some continence tests last week - this is to be followed up again soon, they want to double check that the retention was 'real' or normal for me - whatever that means. So you can imagine the effect a severe cough is having and the dashes to the loo, etc.
Anyway, she then told me try this inhaler and if this doesn't work try an antihistamine - I asked her if I should start investigating allergies then and her reply was - try an antihistamine if the cough stops its an allergy "whats to investigate". I will not be going back to her!
I will keep you all posted of how I get onas I need to go bak again this next week after I have given the new inhaler a try.
It sounds like you may have a chronic cough due to hypersensitivity of the vagus nerve. Anyway, that's what I have had for many years. The only thing I've found to suppress the cough is the drug Tramadol. It may be worth a try.
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