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NHS Don't Believe my Nose is Completely Blocked at Night

Posted , 16 users are following.

jennraa
jennraa

Hi, I'm having some problems getting help on the NHS and wondering if anyone else has had the same problem?

Over the past 7 years, I've found it increasingly difficult to sleep and breathe properly - getting to sleep wasn't a problem at first, but I would wake up feeling like I was suffocating. My nose would be blocked and my throat felt dry and raw.

Over the past 2 years, my nose has become so blocked that even getting to sleep in the first place is often impossible. My throat seems to close up with dryness if I try to breathe through my mouth instead.

After years of simply being prescribed sleeping tablets and told 'it was stress' - even though I had a great life with nothing to be stressed about - I paid to see a private ENT doctor. She diagnosed a deviated septum. I had surgery at a different private clinic but too much cartilage was removed and I was left with a drooping tip.

I still couldn't breathe properly so I was given intranasal corticosteroids, a CT scan and went to the 'top surgeon in ENT' who practises privately and is also a professor in the field. He showed me that, despite the steroids making my nose feel a bit clearer, the CT scan shows I have enlarged inferior turbinates and I also have possible nasal valve collapse. This made perfect sense to me because it feels like something's swollen inside my nose - especially in the evenings.

Further tests showed a strong allergy to dust mites may be causing my turbinates to swell more than usual when exposed to them.

I couldn't afford to pay anymore so I went back to the NHS with my findings. However, the NHS ENT surgeon I've been referred to refuses to believe that I need my turbinates reduced!!

When he looked inside my nose, I was very nervous so had adrenaline pumping through me and I was sitting upright in a clean, dust free doctor's office - these are very different conditions to when I'm relaxing (trying to) or lying down in bed! So of course my turbinates wouldn't have been as big as they are when I'm trying to sleep!

The Professor I had seen, had noted that my turbinates could be only slightly enlarged at times during the day, but could easily get too big when my muscles are relaxed or I'm lying down. And that I would benefit from somnoplasty and immunotherapy to keep the allergy in check long-term.

But the NHS consultant says he will only fix the structure of my nose, and feels my turbinates are pretty normal! He also said that there's no point in taking corticosteroids and I don't need immunotherapy - which was very weird because when I have stopped using the steroids, even with natural therapies in place, my nose gets unbelievably blocked!

I got a 2nd opinion from a different NHS consultant who said it's hard to find a doctor who will operate on my turbinates as they seem ok when examined in the surgery offices. He said that this doesn't mean they are always like that but that he doesn't operate himself anymore! He advised that to keep my allergy in check I can stay on corticosteroids forever and immunotherapy probably isn't available.

I don't want to keep using the steroids because my optician recently discovered that my eye pressure has increased to dangerous measures while I've been using them.

I feel I will have to take the 1st NHS consultant's offer to fix the structure and then find a way to get my turbinates reduced privately afterwards! I really don't know what else to do!

1 like, 18 replies

18 Replies

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  • luke44500
    luke44500

    Posted

    Hey thanks for that info. I have that same problem but not to that extreme. When I go down to sleep it gets hard to breath threw my nose. I can feel it start to kinda like swell up in there some how, but for example, when I sit up real fast or run in the kitchen real quick the swelling goes down but almost immediately after it kinda swells up while I'm upwards then I would say my nose about 80% functional but when I lay back down BOOM back again. And like you said I breath threw my mouth and it gets very dry. So I guess after reading this I think blood is rushing to my head and into those turbinates you spoke of because the only way I really get good air flow is when I position myself a little more upwards so that the blood doesn't rush so bad in my nose area. Also taking a shower before sleeping and ridding all mucus helps a lot. Thanks for your comment! By
    • mithat2003
      mithat2003 luke44500

      Posted

      Hi

      I am the same and I have tried everything. Operations and seeing londons best didn't help either. Now I am using otrivine nasal spray for children. It is so mild that I can use it everyday. It made wonders. Changed my life for better. Unfortunately they don't sell it UK. I buy mines when ever I go to Turkey. They cost less then a pound. I hope it helps.

  • westerby1
    westerby1 jennraa

    Posted

    I know this is an old post, and hopefully everything is ok with you now (although experience tells me it probably won't be!)  If you are still having problems, you could try buying an adjustable bed.  I have the same problem as you, my nose blocks at night and I just snooze for a couple of hours, before I wake up coughing and choking with the driest mouth and throat you could imagine. However, when I was in hospital, for a couple of weeks, I had no problem whatsoever, because I adjusted the bed to an almost sitting position. I am saving up at the moment to buy one, they also help with digestive issues such as heartburn and acid reflux.  You could also try taking an anti histamine 2 hours before you go to bed, and see if that helps with your dust mite allergy.  I know you can get covers for your mattress, quilt and pillows which are supposed to suppress dustmites in your bedding, you could perhaps look into these as well?  The steroid spray worked for me, but after a while I started to have problems with it: stinging, burning and severe pain in my nose which was worse than the original problem!  Good luck!
  • care4health
    care4health jennraa

    Posted

    Hi jennraa,

    When I was reading your post, first I though I must have been writing it, cause your problem is so similar to mine.

    I have constant nasal congestions, sometimes it's better, sometimes it's awfully block and nightimes one side alsways gets blocked, but sometimes both.

    I had middle turbinate reduction., but it did not helped, so be very careful if you are undergoing any type of surgery, I heard stories that not that it didn't help, but did get worse. I'm actually lucky that it didn't do more damage for me.

    I went to see another ENT guy, he said that I had a deviated septum, which contradicted the first one who operated on my turbinates. According to him my septum was dead straight. Now how can you trust these people after such contradiction? The 2nd ENT also wanted to shrink my inferiour turbinates. I felt like he was just using me as a guinea pig, and had not much idea what my problem was.

    I also had all the allergy tests and just like you I was told that I am alleric to dust mites. 

    While this is true, - and that's my opinion- it is not what causing the congestion.

    What the real problem is, that the blood vessels have lost the ability to constrict, possibly to a nerve damage in the nose. 

    Have you noticed that change in the weather effecting your sinuses? Humidity?

    Do you have the same problem when you are away from home and from that area? 

    I used to live in the hot tropics and humidity definately was a big contributor. I moved away, and got much better, but still having problems just not that bad as it was before. So changing enviroment / climate might help.

    I also tried all  the differents meds, natural and prescription ones, and it dodn't help. When you think about it, these meds suppose to treat only the symptoms: reduce the welling, but not the cause. So it's a bit like having a swollen gum from a bad tooth, and getting treatment only for the inflamation. If the tooth is not treated there wouldn't be any point to get treatment for the swelling only, right?

    But that's exactly what's happening whth "treatments" for chronic rhinitis. Of course it's not gonna work.

    Have you tried taking pseudoeffedrine? I keep a box at home in case it gets really bad. 

    haven't you been diagnosed with vasomotor rhinitis? Or non allergic rhinitis?

    Read some articles about it, there's a treatment for Trans-nasal vidian neurectomy, but it's risky I heard. Google it up.

    Let me know how you going

     

  • drockerr
    drockerr jennraa

    Posted

    I recently started suffereing with this after my fiance got us two guinea pigs, and my life is all about trying to breath, its like im living in a place high in altitude, what to do im confused, however im using xylo-comod for like a month now and it instantly gets my swelling down, so i can breath right and sleep. is there any one who has recently got a solution to this, coz i dunno for how long i can continue taking it.
    • care4health
      care4health drockerr

      Posted

      Gosh, it sounds like you're allergic to guinea pigs, Have you tried to give them away and see if that's what's causing the problem???

      I never used xylo-comod, but it is a nasal decongestant, works  by constricting (shrinking) the blood vessels. You're only supposied to use it for a few days! If you using it longer you will have a rebound effect, your nose will get worse than ever! 

       

  • damian24099
    damian24099 jennraa

    Posted

    I have the same problem that gave me spray and it didn't work i m up every night struggling to break
  • Katlin66
    Katlin66 jennraa

    Posted

    You might find this interesting https://en.m.wikipedia.org/wiki/Empty_nose_syndrome. Look at the second paragraph in the Etiology section and click on 'nasal cycle'. I cannot imagine why this is not explained in the symptoms part of this site.
    • care4health
      care4health Katlin66

      Posted

      Yes, indedd very interesting article. It explains what the nasal cycle is and why the nose gets congested, but it doesn't give any solution. 

      And it gets to where everything else ends up, lack of research.  Really frustrating. 

       

    • Katlin66
      Katlin66 care4health

      Posted

      Not sure there is a solution if it is a natural process.  If the problem is very great then perhaps surgery might be necessary to correct possible physical problem inside the nose.  I have been concerned over the fact that I have never been able to breathe through both sides of my nose equally well for years.  I used to be repeatedly told to close my mouth as a child but said that I found it difficult to breathe well enough if I did.  Back in the 1950s nothing was done about it.  I mentioned it when I had a benign growth removed from my right nostril a couple of years ago but no notice was taken.  I have wondered if it contributes to my migraines but bad ones are few and far between these days.  At my age now, I would not pursue it as it is not a major issue in my life.  However, if it was seriously affecting my life and I were a lot younger I would fight to get something done about it.
    • cj16
      cj16 Katlin66

      Posted

      Iv had this from when I was child I couldn't even brush my teeth with out the feeling that I could not breath I always slept with my mouth open. Then I had my tonsils out at 4 years old along with sumthing removed from my nose then at 13 I had lump removed from under my chin. They removed it along with something else from my nose the surgeon doctor dilks from ear nose and throat whips cross hospital told me I would breath out my nose properly for the first time in my life?! Now this was true for a few years but I stoped pasing snot through the nose and now it's on my throat ie post noseil drip, dry nose. The only time I hav mucus in the nose is when iv got a infection or flu. I pray I get this sorted as it's ruining my life depressed stressed I don't feel normal anymore as I can't work I don't rest or sleep like i should I dnt look like I should iv just had enough now we have to speck up or we rot away silent

  • Sarah23456
    Sarah23456 jennraa

    Posted

    You need to tackle your allergy symptoms first siimp
  • Bhumra
    Bhumra jennraa

    Posted

    Hi All !

    I went through this discussion. I am having same nose block issue. I am still looking a better solution of it. Please share someone if he/she had found solutions.

    But I found that this is just an Allergy or pollution related issue. I went for trekking at hill area for 2 days. I had fresh air, no pollution, no dust. While coming back I found that I was breathing very easily for next few days without any spray. I could breathe for few days and night too well.

    So I believe pollution free air is solution of this sinus issue. Please let me know if someone has tried it. Thanks

    • mithat2003
      mithat2003 Bhumra

      Posted

      Hello

      I have the same problem. I use otrivine nasal spray for child. They don't sell it in U.K. I buy mines in bulk from Turkey when I am on holiday there. It is so mild I use it every night past 5 years.

  • tracie43945
    tracie43945 jennraa

    Posted

    I had the same problems you did. I have no idea what NHS is, I am assuming

    An HMO or something?? Anyway, in May I had surgery for a deviated septum,

    A nasal polyp, and they did surgery on my turbinates. I am also taking allergy shots now,

    Also fluticasone and zyrtec and neilmed sinus rinses, and I feel much better all around! I hope

    This helps. Good Luck!

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