Help Me to Help My Doctor Stop Me Coughing and Be Able to Sleep Again
December 26, 2011 2:08 PM Subscribe
Chronic cough filter: YANMD, and I am being treated by an ENT, but please, if you have any experience in annoying throat tickles that cause coughing to the point where you can't sleep, take a moment to read my long story and see if you can help me advise my ENT where to "look."
Back in September 2010 I started suffering from a very annoying, very aggressive "tickle" in the back of my throat. I've had mild bouts of post-nasal drip in the past, but this was different. This tickle started fairly abruptly and caused almost spasmodic bouts of coughing, often until the point where I gagged. During my past post-nasal drip experiences (which only occurred when I lay down to sleep, despite several pillows supporting me), a spritz of Chloroseptic spray in the back of the throat or sometimes a dose of NyQuil numbed everything and I could sleep peacefully. This new irritation occurred at all times of the day and night, whether I was upright or not. I took to carrying a bottle of water in my purse for when the coughing fits happened when I was out and about; nevertheless the water (or other liquids) took many, many gulps to soothe that hideous tickle. Numbing sprays and NyQuil were no help at all.
Some backstory: I was dx'd with Lupus (SLE) back in 1989 and have been additionally dx'd with some collateral afflictions - vasculitis, Sjogren's syndrome, Reynaud's syndrome - over the years. The Sjogren's had mainly manifested itself in nasal dryness and extreme thickening of nasal mucous (SPECIAL SNOWFLAKE NOTE/COMMENT ADVISORY: Any discussion of nasal discharge tends to absolutely gross me out for whatever reason, and other than "mucous" I cannot say any of the traditional words related to the yuckiness in our noses, and any mention of such words - even in print - triggers my vomit reflex.) Anyway, my nasal discharge, when I have it, is extremely thick (like say, when I have a cold or have been crying - I have to honk like a goose to blow my nose so that I can breathe), otherwise it is usually crusty and stained with dried blood due to my dryness issues. I've been taking Mucinex daily for over a year (and I chug lots of water during the day) to help thin my mucous a bit, especially for those times it drains into my throat. Sjogren's-wise I never had eye problems until Summer 2010, when I not only suddenly started feeling the scratchy, "stiff eyeball" symptoms of "dry eye", I also noted that my tears had suddenly become very thick and oily to the point that they regularly smudged/obscured my eyeglasses. I don't know if the sudden onset of eye dryness has any connection with this coughing thing, but I do also have a subtle swelling on the left side of my face just below my ear that seems consistent with parotid gland Sjogren's involvement.
So, anyway, when I complained of this coughing thing to my rheumatologist, his response was to look in my mouth and note the irritation near my throat and posit that it was acid reflux. He gave me an Rx for some acid reducer but also referred me to an ENT lest the acid med didn't work. It didn't, so I called the ENT. His first reaction was also "irritated throat, acid reflux" and he gave me yet another acid reducer prescription. When I returned a month later (with no improvement) I happend to have one of my coughing fits in his office, and he noted that the cough was a "little" moist and that after each bout I had to blow my nose, so he ordered a CT scan of my sinuses. He told me that there was swelling in two of my sinus cavities on the right side and prescribed a course of Prednisone and Amoxicillin. After the second day of taking those meds, I slept a sound 8 hours for the first time in months (previously I'd been awakened every 45 minutes or so by the tickle and the need to sit up and cough and cough). It was like a magic elixir and all was well...for a while. After the Prednisone ended I still had several doses of Amoxicillin left, and after day 6 of the regimen I broke out in a hideous itchy rash - a reaction to the Amoxicillin which I'd never had before in my life to any antibiotic. Anyway, the rash slowly subsided over the next three days, but then the cough returned. It now seems more localized - I can feel the "tickle" (almost like someone blowing sand onto my tonsil) on the left side of the back of my mouth. But now I also feel a dull ache just below my left ear as well (both only occur when I lay down) and sometimes a slight itchy/burny sensation on the roof of my mouth on that side. I'm now back to getting only an hour of sleep at a time before the irritation makes me have to sit up to cough so that I don't choke. My left eye also tears up much more than the right when I'm hacking.
Extremely long story short, I'm no doctor, but it seems like there is something sinus-y or perhaps salivary gland-y going on in the left side of my head. But if that is the case, why didn't the ENT see any left side sinus irregularities in my CT scan? Is there some sort of cross-over effect, where if your right-side sinuses are infected you'll feel the effects on your left side? If the parotid gland(s) are involved, would that show in a standard CT scan? (Thus far both he and my rheumy simply palpated the swelling and said that they didn't "feel" anything there.) Something worked for a while during my previous treatment, but I know a person can't take Prednisone forever (if that was, in fact, the active ingredient that stopped the tickle). I've got a follow-up appointment coming up in early January, but I'd like to hear any ideas as to what might be going on. Like most doctors/specialists he's always somewhat rushed during appointments, but he does seem to listen to my input (despite his dismissal of my asymmetrical face) and I'd like to get some ideas to discuss with him at my next appointment. (For example, even though I "feel" symptoms on my left side, does that mean the sinuses on that side are necessarily involved? Or could the swollen right-side sinuses be the culprit, and the last round of meds didn't quite finish the job?)
Back in September 2010 I started suffering from a very annoying, very aggressive "tickle" in the back of my throat. I've had mild bouts of post-nasal drip in the past, but this was different. This tickle started fairly abruptly and caused almost spasmodic bouts of coughing, often until the point where I gagged. During my past post-nasal drip experiences (which only occurred when I lay down to sleep, despite several pillows supporting me), a spritz of Chloroseptic spray in the back of the throat or sometimes a dose of NyQuil numbed everything and I could sleep peacefully. This new irritation occurred at all times of the day and night, whether I was upright or not. I took to carrying a bottle of water in my purse for when the coughing fits happened when I was out and about; nevertheless the water (or other liquids) took many, many gulps to soothe that hideous tickle. Numbing sprays and NyQuil were no help at all.
Some backstory: I was dx'd with Lupus (SLE) back in 1989 and have been additionally dx'd with some collateral afflictions - vasculitis, Sjogren's syndrome, Reynaud's syndrome - over the years. The Sjogren's had mainly manifested itself in nasal dryness and extreme thickening of nasal mucous (SPECIAL SNOWFLAKE NOTE/COMMENT ADVISORY: Any discussion of nasal discharge tends to absolutely gross me out for whatever reason, and other than "mucous" I cannot say any of the traditional words related to the yuckiness in our noses, and any mention of such words - even in print - triggers my vomit reflex.) Anyway, my nasal discharge, when I have it, is extremely thick (like say, when I have a cold or have been crying - I have to honk like a goose to blow my nose so that I can breathe), otherwise it is usually crusty and stained with dried blood due to my dryness issues. I've been taking Mucinex daily for over a year (and I chug lots of water during the day) to help thin my mucous a bit, especially for those times it drains into my throat. Sjogren's-wise I never had eye problems until Summer 2010, when I not only suddenly started feeling the scratchy, "stiff eyeball" symptoms of "dry eye", I also noted that my tears had suddenly become very thick and oily to the point that they regularly smudged/obscured my eyeglasses. I don't know if the sudden onset of eye dryness has any connection with this coughing thing, but I do also have a subtle swelling on the left side of my face just below my ear that seems consistent with parotid gland Sjogren's involvement.
So, anyway, when I complained of this coughing thing to my rheumatologist, his response was to look in my mouth and note the irritation near my throat and posit that it was acid reflux. He gave me an Rx for some acid reducer but also referred me to an ENT lest the acid med didn't work. It didn't, so I called the ENT. His first reaction was also "irritated throat, acid reflux" and he gave me yet another acid reducer prescription. When I returned a month later (with no improvement) I happend to have one of my coughing fits in his office, and he noted that the cough was a "little" moist and that after each bout I had to blow my nose, so he ordered a CT scan of my sinuses. He told me that there was swelling in two of my sinus cavities on the right side and prescribed a course of Prednisone and Amoxicillin. After the second day of taking those meds, I slept a sound 8 hours for the first time in months (previously I'd been awakened every 45 minutes or so by the tickle and the need to sit up and cough and cough). It was like a magic elixir and all was well...for a while. After the Prednisone ended I still had several doses of Amoxicillin left, and after day 6 of the regimen I broke out in a hideous itchy rash - a reaction to the Amoxicillin which I'd never had before in my life to any antibiotic. Anyway, the rash slowly subsided over the next three days, but then the cough returned. It now seems more localized - I can feel the "tickle" (almost like someone blowing sand onto my tonsil) on the left side of the back of my mouth. But now I also feel a dull ache just below my left ear as well (both only occur when I lay down) and sometimes a slight itchy/burny sensation on the roof of my mouth on that side. I'm now back to getting only an hour of sleep at a time before the irritation makes me have to sit up to cough so that I don't choke. My left eye also tears up much more than the right when I'm hacking.
Extremely long story short, I'm no doctor, but it seems like there is something sinus-y or perhaps salivary gland-y going on in the left side of my head. But if that is the case, why didn't the ENT see any left side sinus irregularities in my CT scan? Is there some sort of cross-over effect, where if your right-side sinuses are infected you'll feel the effects on your left side? If the parotid gland(s) are involved, would that show in a standard CT scan? (Thus far both he and my rheumy simply palpated the swelling and said that they didn't "feel" anything there.) Something worked for a while during my previous treatment, but I know a person can't take Prednisone forever (if that was, in fact, the active ingredient that stopped the tickle). I've got a follow-up appointment coming up in early January, but I'd like to hear any ideas as to what might be going on. Like most doctors/specialists he's always somewhat rushed during appointments, but he does seem to listen to my input (despite his dismissal of my asymmetrical face) and I'd like to get some ideas to discuss with him at my next appointment. (For example, even though I "feel" symptoms on my left side, does that mean the sinuses on that side are necessarily involved? Or could the swollen right-side sinuses be the culprit, and the last round of meds didn't quite finish the job?)
Wow. That's a really thorough description. I have also had chronic bouts of extreme coughing, where the symptoms overlapped somewhat with yours. Only somewhat, but since I've been mostly cured for a few years, I'll post what was up with me and maybe something will help.
For YEARS I would get sick in September, stay sick until December, then get sick over Christmas vacation and cough until maybe June. I saw GPs, allergists, got meds for asthma, got allergy shots, got innumerable bouts of bronchitis and even pneumonia or pleurisy. I would have six months of a cough so bad that I couldn't talk on the phone.
The solution was:
- I was desperately allergic to dustmites, cats, and dogs. I no longer have pets, replaced carpets with hardwoods, encased all bedding for dust mites, and otherwise allergy proofed my house. (If you haven't had allergy testing done, you might want to get a scratch test.)
- I got a standing prescription from my doctor for Flonase (steroid nasal spray) and Astelin (antihistamine nasal spray). Initially, I use these constantly, but now I use them maybe thirty days or fewer out of a year. I also started regularly using a Neilmed sinus rinse.
- this was the key: if I got a cold and it lingered more than two weeks, I called my doctor and asked for antibiotics for a sinus infection. It turns out that the months and months of cough were mostly due to a low grade sinus infection. Kill that (it sometimes took more than one type of antibiotic), and the cough would go away. I got REALLY aggressive at avoiding colds (the sinus rinse really helped a lot with that) and treating them while I had them (ditto sinus rinse there, too, as well as using the flonase and astelin), and that has almost entirely cured my persistent cough.
FWIW, my first allergist treated me with reflux meds and an asthma inhaler-- antibiotics and steroids were MUCH more effective. The asthma inhaler actually made me much worse. So it sounds like we may be somewhat similar in our symptoms and treatments. I'm sort of ignoring the Lupus, because that's outside my experience. Hopefully what I've written will be helpful nevertheless.
posted by instamatic at 5:25 PM on December 26, 2011 [2 favorites]
For YEARS I would get sick in September, stay sick until December, then get sick over Christmas vacation and cough until maybe June. I saw GPs, allergists, got meds for asthma, got allergy shots, got innumerable bouts of bronchitis and even pneumonia or pleurisy. I would have six months of a cough so bad that I couldn't talk on the phone.
The solution was:
- I was desperately allergic to dustmites, cats, and dogs. I no longer have pets, replaced carpets with hardwoods, encased all bedding for dust mites, and otherwise allergy proofed my house. (If you haven't had allergy testing done, you might want to get a scratch test.)
- I got a standing prescription from my doctor for Flonase (steroid nasal spray) and Astelin (antihistamine nasal spray). Initially, I use these constantly, but now I use them maybe thirty days or fewer out of a year. I also started regularly using a Neilmed sinus rinse.
- this was the key: if I got a cold and it lingered more than two weeks, I called my doctor and asked for antibiotics for a sinus infection. It turns out that the months and months of cough were mostly due to a low grade sinus infection. Kill that (it sometimes took more than one type of antibiotic), and the cough would go away. I got REALLY aggressive at avoiding colds (the sinus rinse really helped a lot with that) and treating them while I had them (ditto sinus rinse there, too, as well as using the flonase and astelin), and that has almost entirely cured my persistent cough.
FWIW, my first allergist treated me with reflux meds and an asthma inhaler-- antibiotics and steroids were MUCH more effective. The asthma inhaler actually made me much worse. So it sounds like we may be somewhat similar in our symptoms and treatments. I'm sort of ignoring the Lupus, because that's outside my experience. Hopefully what I've written will be helpful nevertheless.
posted by instamatic at 5:25 PM on December 26, 2011 [2 favorites]
My first thought was asthma, too. Prednisone makes asthma go away, but if the dose is too short or there's an allergen in your house/work/whatever that is triggering it, it can just come right back again. I have cough variant asthma and it feels very much like what you describe: a tickle in the back of my throat that I can't get rid of, and coughing until I feel like I might or do vomit.
posted by rosethorn at 5:38 PM on December 26, 2011
posted by rosethorn at 5:38 PM on December 26, 2011
poor you! i'm so sorry. agree with others that it could be cough-variant allergic asthma. that's what i had, and i had some--though not all--of your symptoms. instamatic's answer is especially good on what to do. definitely make sure your ent tests you for allergies, especially pollen but including food. if he won't, go to another one.
i also got sinus surgery...hope you don't have to end up doing that, but it did help me greatly.
posted by dovesandstones at 6:35 PM on December 26, 2011
i also got sinus surgery...hope you don't have to end up doing that, but it did help me greatly.
posted by dovesandstones at 6:35 PM on December 26, 2011
My first guess is a growth, tumor, in your sinus, due to an experience in my family. But if the CT doesn't show anything, I don't know.
But I can suggest that you try OTC "Benedryl Ultratab" tablets or store brand copy, the type that is ONLY "Diphenhydramine HCl 25mg". These are cheap, $4.00 for 48 pills for store brand. These reduce by maybe 95% the very similar symptoms for my family member who has a benign growth in the sinus and is putting off any surgery. You can take up to 6 per day, so one at night could be good.
Notably, OTC "Claratin" tablets of only "Loratadine 10mg" which is sold for the identical symptoms did not help this person, but the Benedryl type works well.
Do not take one for at least 12 hours before you get any other test. Best wishes.
posted by caclwmr4 at 10:49 PM on December 26, 2011
But I can suggest that you try OTC "Benedryl Ultratab" tablets or store brand copy, the type that is ONLY "Diphenhydramine HCl 25mg". These are cheap, $4.00 for 48 pills for store brand. These reduce by maybe 95% the very similar symptoms for my family member who has a benign growth in the sinus and is putting off any surgery. You can take up to 6 per day, so one at night could be good.
Notably, OTC "Claratin" tablets of only "Loratadine 10mg" which is sold for the identical symptoms did not help this person, but the Benedryl type works well.
Do not take one for at least 12 hours before you get any other test. Best wishes.
posted by caclwmr4 at 10:49 PM on December 26, 2011
I had a winter where I had a horrible cough that I could not shake. I would wake up in the middle of the night choking and gasping for air. During the day I would cough if I laughed.
It was the lack of humidity in my bedroom that did it. I got a humidifier and ran it all the time in my bedroom through the winter and my cough finally cleared.
A few years later I found out I also had sleep apnea, so getting a CPAP machine with a humidifier helped even more.
posted by wrnealis at 3:36 PM on December 27, 2011
It was the lack of humidity in my bedroom that did it. I got a humidifier and ran it all the time in my bedroom through the winter and my cough finally cleared.
A few years later I found out I also had sleep apnea, so getting a CPAP machine with a humidifier helped even more.
posted by wrnealis at 3:36 PM on December 27, 2011
Best answer: Long shot: Have the ENT look in your ears. Much as sneezing fits can be triggered by bright lights, coughing fits can be triggered by irritation related to the ear. Extremely unlikely, but it sounds like all the horses have been corralled and it's time to start looking at zebras.
posted by mimo at 10:57 AM on December 28, 2011
posted by mimo at 10:57 AM on December 28, 2011
Response by poster: Long shot: Have the ENT look in your ears. Much as sneezing fits can be triggered by bright lights, coughing fits can be triggered by irritation related to the ear. Extremely unlikely, but it sounds like all the horses have been corralled and it's time to start looking at zebras.
Maybe not so much of a long shot now that you mention it....the side on which I feel the tickle is also the same side on which I feel a dull ache just below that ear. It is also the same ear in which I occasionally hear a weird "popping" sound in rapid succession upon occasion - not a "pop" like when your plugged ears clear up during an airplane flight, but rather like some tiny Rice Krispie kernels popping. Thanks for yours and all the replies!
posted by Oriole Adams at 2:03 PM on December 29, 2011
Maybe not so much of a long shot now that you mention it....the side on which I feel the tickle is also the same side on which I feel a dull ache just below that ear. It is also the same ear in which I occasionally hear a weird "popping" sound in rapid succession upon occasion - not a "pop" like when your plugged ears clear up during an airplane flight, but rather like some tiny Rice Krispie kernels popping. Thanks for yours and all the replies!
posted by Oriole Adams at 2:03 PM on December 29, 2011
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I would think an ENT would check for that, but maybe you need a lung specialist instead?
posted by ErikaB at 3:51 PM on December 26, 2011 [1 favorite]