Devastatingly swollen turbinates

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I have been suffering from perennial allergic rhinitis for at least 8 years. I am 21 and I am studying computer science.

My turbinates are extremely swollen. The swelling is present during the whole year, regardless of the season. It gets a lot worse in the most of the indoor places. Postnasal drip is present when turbinates are swollen, but I don't have problems with runny nose. I also don't have problems with sneezing or itchy eyes.

I kindly ask you not to post comments if you also suffer from runny nose. I ask that because always when I found someone with a condition same as mine, the discussion was filled with comments from people suffering from other rhinitis symptoms besides swollen turbinates, especially from people with runny noses. I have compassion for you, but trust me, this is different.

Places where my condition is the worst are caffe bars and cheap restaurants with poor ventilation. My turbinates become swollen almost immediately after I enter these places, it takes only a few seconds. After leaving those places and getting some fresh air, I immediately feel partial relief, but not completely, I suspect that's because the allergen remains present on my skin.

Condition also gets worse in many other indoor places, such as my apartment and college classrooms. We recently did a detailed cleaning of the apartment, especially my bedroom. Soon after that, my condition became a bit better (not dramatically) both at home and at other places where it usually gets worse. But that small improvement only lasted couple of days.

Places where I get almost immediate relief are doctors' and dentists' offices. Immediately upon entering I feel significant relief, and after couple minutes spent there it gets even better. I am quite sure it happens because those places are sterilized.

Being out on fresh air also brings significant relief, but not as much as being in doctors' and dentists' offices.

I used many different medications and visited many doctors. Medications that provided significant relief are antihistamines. I tried different types and all of them caused extreme drowsiness and limb weakness. One time it was so extreme that I almost dropped a pot while carrying it from the fridge to the table. Even bilastine, which was designed for treating allergy without drowsiness, caused severe drowsiness.

Corticosteroids such as Avamys and Nasonex didn't provide any relief at all. Capsaicin (ingredient found in hot peppers) based sprays bring mild, very short-lasting relief (up to one hour).

Besides medications, there are some other things that provide partial relief. Saline solution provides partial relief immediately. Condition worsens again in 20-30 minutes, depending on the place I'm at.

Showers also provide instant parital relief, but it worsens after I spend about 20 minutes in my room.

I did allergy tests. I used skin prick test to test for all common allergens and it turned out negative. Then I measured total IgE in blood, it was 193 kU/L, which is higher than the reference value (122 kU/L). Then I ran specific IgE tests from blood for some allergens, and all of them turned out to be negative. All of this means I am allergic, but can't determine exact cause of allergy.

I had a deviated septum surgery before we determined I suffered from allergy, the surgery didn't help at all (during the surgery they also removed a little bit of my turbinates). Later I had RF mucotomy (basically burning your turbinates with high temperature) done, it didn't provide significant relief.

More detailed, there are 2 problems with  turbinates. One is the burning sensation and the other one is the enlargement of turbinates.

Burning sensation is bad, but it can be controlled with large quantities of saline solution. Also, the burning sensation almost always comes together with enlargened turbinates, but turbinates can be enlargened without the burning sensation.

The enlargement of the turbinates is the biggest problem. At almost all times only one turbinate is enlargened, every couple of hours they switch sides (nasal cycle). In some places both turbinates swell badly (places with poor ventilation like caffe bars and some restaurants). The problem with enlargened turbinates is that I feel they are literally pressing my brain against the skull. If the left turbinate is enlargened then I feel pressure in the left side of the head, and if the right turbinate is enlargened then I feel pressure in the right side of the head. This pressure makes me go mad. I go to into "Hulk-like mode". I become very nervous and talk aggressively to people around me for no real reason except for enlargened turbinates.

I believe that  enlargened turbinates are significantly reducing blood flow to the brain because of the following: 

First, POTS (Postural orthostatic tachycardia syndrome) - when I stand up after sitting or lying down for a longer period of time I feel like I will pass out, my vision goes black. I already passed out once. When I stand up I need to sit down immediately for 10 seconds until my head gets better, if I don't sit down I'd pass out for sure. What is important is that if my left turbinate is enlargened then I get a black out feeling in the left side of my head (same goes for right turbinate and right side of head).

Second, when my turbinates are enlargened I feel extreme tiredness, regardless of the amount of sleep I get. I sometimes fall asleep during lectures while sitting in the first row of the classroom. I believe it is caused by enlargened turbinates because when I rinse my nose with saline solution I immediately become less tired or stop being tired at all. Washing my face with water also helps with tiredness. I believe that by rinsing my nose and washing my face I am removing the allergen from my body.

Third, partially connected to the second, is yawning. When my turbinates are enlargened I yawn literally once every minute.

Fourth, my focus becomes very poor. It is what gives me the most trouble. I literally can't pay attention for more than 5 seconds, and when I lose focus it takes at least as much to regain it. I often can't even have a decent conversation because it's too hard to think about what the other side is saying and what I will respond. I also become very slowed down. Everyday normal tasks, like taking a shower and preparing meals take a lot longer than they should. The hardest activity is learning. It takes ages to read something and even more time to memorize it. It becomes harder and harder each semester (I am studying computer science).

Fifth, also very important, is that my voice is weird and more quiet when turbinates are enlargened, it feels like I am speaking through my nose. People don't take me seriously when I talk using that voice.

If you suffer from the same condition or know someone who does please share your advice and your diagnosis.

I repeat my kind request: please do not to post comments if you suffer from runny nose.

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13 Replies

  • Posted

    Good morning Ivan,

    A very good and informative post you've written.

    I too suffer the same as yourself and have done for years and years.

    I also suffer severe Eustachian Tube Dysfunction and allergic Rhinitis.

    My left Turbinate is nearly always swollen.  I'm sure you've Googles

    all about our Turbinates to educate yourself on how they work.

    I think it's all to do with allergies and the worst being dust...which in

    the home is almost impossible to eradicate. 

    Maybe your next step will have to be surgery.  I received sinus surgery

    some years ago, which helped for a while, but no long lasting relief.

    Because of allergies I also get polyps grow in the linings too, which

    also have been removed on a couple of occasions.

    I've purchased a very expensive machine that helps to clear the air

    of dust and allergens....have I seen any significant improvement, 'No' 

    I d regular nasal rinses too, that like you only last a short while.

    So it seems the only route is surgery, which I know my ENT consultant

    would perform for me if I ask, as he knows how much I suffer.  It's just

    any surgery there is always potential risks.  I'm wary, as many years

    ago I contracted bacterial meningitis through ETD and lost the sight in

    my left eye,.....so any sinus or turbinate surgery is risking.  The worse

    problem I have is trying to sleep, my left side is the side I suffer.  So,

    every other night I use a decongestant spray, once only up the left

    nostril and that allows me a good nights sleep.

    All my allergy testing came back negative, except house dust and

    animals, however, I do know that pollen and tree mould affect me

    too.

    I don't think this message will be of much benefit to you, as you

    seem very well read on what you're talking about.  Would you

    consider surgery ?

    Best of luck

    Anne

     

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    • Posted

      Thank you for your response Anne,

      During my septum surgery I already had parts of my turbinates removed, but it didn't help. Also, where I live, I don't get to the decide if I'm going to have a surgery. My ENT specialist thinks that further surgeries are not a good idea because of the possibility of the Empty Nose Syndrome.

      Best regards,

      Ivan

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    • Posted

      Hello.

      You may have what is called Vasomotor rhinitis also called pernennial non allergic rhinitis. Capsaicin spray is a treatment of choice for this condition.

      regards

      Report Reply
    • Posted

      Hello Mijo,

      as far as I know vasomotor rhinitis is also called nonallergic rhinitis, and in my case allergy is the problem. I believe it is allergy because my total IgE is elevated and because my symptoms are present only in certain places.

      Also, I sprayed capsaicin in my nose for almost 3 months, at first it brought relief for a short time (max 1 hour), later it stopped working at all.

      Best regards

      Report Reply
  • Posted

    Hi Ivan, 

    You seem to have a similar problem to me and I’m wondering if you’ve had any success?

    I too have had my turbinates trimmed, repositioned and restructured. Then had surgery to reduce the size with the heated prong you mentioned. I still haven’t had any relief. 

    I thought my issue was down to an injury but I after two failed surgeries I think it could be allergies. 

    I too have a blocked nose from enlarged turbinates, I feel constantly tired and like I can’t concentrate on anything. I also experience a burning sensation from time to time. 

    I think mine is caused by damp in the house. 

    Do you have any more news? 

    Report Reply
    • Posted

      Hello,

      No success yet.

      Currently, I'm trying out a nasal spray that has the same ingredients as Otrivine in the US. It helps for up to 12 hours, but it is not meant for continuous use (7 days at a time is the limit in the instructions) because it can cause rebound effect (the swelling becomes even worse than it was before). Although I've read about people who have been using for 30 years. I also got a mild nosebleed from it, but I read that isn't common.

      If you do the allergy testing and the results come back negative, I suggest you also measure the total level of IgE in blood. In my case, all skin prick tests and specfic IgE blood tests came negative, so if I hadn't done the total IgE test I wouldn't know that allergy is the problem. Measuring the total level of IgE in blood won't show what you are allergic to, but it will show if you are allergic at all or not.

      Best of luck,

      Ivan

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    • Posted

      Thanks Ivan. 

      I’ve had an allergy test before and the results were cat dander, dust mites, grass pollen and Mold. 

      My partner just got diagnosed with asthma so I’m getting more confident our house could be the problem. 

      Have you heard anyone make a full recovery following allergy treatment? 

      What was your treatment like?

      Report Reply
    • Posted

      I didn't have it because we were unable to determine what I am allergic to, all the tests came back negative except for the total IgE measurement.

      Report Reply

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