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Fellow sufferers

Posted , 6 users are following.

barbara75667
barbara75667

I am so glad I have found this forum for fellow sufferers. I too have had horrendous symptoms which stop me from doing what I enjoy. The day always starts hopeful or not so hopeful depending how blocked my ears are, how painful my nose is and how foggy my head is. I sometimes feel I can’t think clearly because my head feels so stuffed. I have tried so many sprays, decongestants which work temporarily but have to go back to my specialist in 2 months to see if anything has improved. Temperature, air pressure has a huge impact on me and no-one understands! Will definitely try Evening Primrose oil and change my toothpaste ....  Had to move to T. Wells for family reasons as had lived in Dorset for 8 years and feel the air here is dirty. Is there a cure for this horrible mucus and I dream of the day when I can get my taste back and proper sense of smell.

1 like, 10 replies

10 Replies

  • Deemac7949
    Deemac7949 barbara75667

    Posted

    I am just reaching out I live America and have also suffered I have tried many things including evening primrose and nothing has worked on a consistent basis. weather has been a culprit appearing to excebate my symptom. I have been told that my symptoms r caused by the allergens  that I am allergic to. it has been a struggle the day feeling of not knowing how i am going to fee. as u say no one understands r can  comprehend what we sufferers go through daily.  I don’t have an answer r a cure but just letting u know u r not alone as u can see from this forum 
    • barbara75667
      barbara75667 Deemac7949

      Posted

      Thanks for that, I am willing to try anything and I see from this forum that sufferers will try anything. I have never taken Evening primrose oil so you never know. Do you live in a dry, warm area as England is very damp ......
    • Deemac7949
      Deemac7949 barbara75667

      Posted

      I live in NY so we have a little bit of everything weather wise right now we r experincing an extreme cold front and I have been dealting with a flare up the last couple of days. just complete stuffiness that I feel through my ears and the front of my forehead, the heavy head feeling.
  • Guest
    Guest barbara75667

    Posted

    Hi Barbara. I too have been suffering almost daily since June when my allergies which I've had for years resulted in swollen turbinates. I know what it's like to hope you'll wake up feeling relief the next morning but often it's the same. My ears are blocked currently as well so I'll be going to the get them syringed some time soon. I have to about every 4 months. I just set my home up with an air purifier, dehumidifier and humidifier and feel it's helping somewhat. I live in Australia where we get fluctuating temperatures with lots of pollen. The air purifier might be a good investment for you? They start from around $100. I find the steroid sprays I'm on are keeping my turbinates from swelling completely but not fixing the issue. One thing they're great for though is mucus. I started evening primrose oil a couple of weeks ago and feel it's doing something but nothing is a miracle cure. All the best to you 

  • anne05078
    anne05078 barbara75667

    Posted

    Good morning Barbara,

    Glad you're in the UK as you will most definitely be able to get prescribed the medication I'm currently using.

    Did your ear/ears start after a cold, do you suffer from sinus issues and also do you have allergies. ??

    You're so right about living in Kent, weather condition are the worse for the above conditions.  

    You haven't mentioned whether you've seen your GP about your blocked ears (ETD) Eustachian

    Tube Dysfunction......such a horrible problem to suffer and I know, after over thirty years of suffering

    from it, how debilitating it is.

    Firstly, ask your GP to prescribe Flixonase Nasule Drops.  You will have to lean your head of the bed

    to administer and stay there for approx 30 seconds.....then try popping your ears.  Squeeze nostrils

    together and blow, you may find they will pop.  Give the drops aabout 30 seconds to seep into your

    tubes.  You may find you need to be using the Nasules for a good week if your ears are really blocked.

    Decongestants really only un-block our noses and doesn't help me with un-blocking my ears....need

    something stronger.  You'll be able to use these Nasules for 6 weeks, then go onto the Flixonase Spray.

    Or you may find that once you've used Nasules you'll be fine again.

    Back in April this year I suffered so severely with ETD that I ended up with a perforated eardrum, through

    the pressure from the mucus.  I see my ENT Consultant twice yearly regarding my blocked ears.  He

    microsuctions all the nasty sticky mucus out and prescribed Prednisolone Steroid Tablets, a 20 day reducing

    course, which did the trick and cleared up all the inflammation in my Eustachian tubes to allow them to drain.

    I then started the Flixonase Nasules, then would normally revert back onto the Flixonase spray.  However,

    due to me having suffered ETD for so many years, the spray no longer works for me.  So I just use the Nasules when my ears block up, which is approx now every 6/7 days.....then I only have to use the Nasules just the once and I'm clear again for a while.

    I bet you had a miserable Christmas with suffering ETD.  So glad mine were ok.

    Wishing the best of luck and A Happy New Year

    Kind regards

    Anne

     

    • barbara75667
      barbara75667 anne05078

      Posted

      Hi there, my specialist put me on steroid nose drops for 6 weeks and am now back on Nasonex spray until I see him again.  I hadn’t heard of the nasules so will ask him. I’m loathe to use any steroid tablets as I was diagnosed with sarcoidosis about 10 years ago and was on prednisolone for 15 months which made me put on weight. I will also ask him for allergy testing. I saw my GP so many times about blocked ears and each time he looked down them and said he couldn’t see anything so couldn’t help me which made me feel very frustrated. I have found a kind specialist who said he thinks my problems are allergies so hopefully will be able to move forward.  I wish you all a Happy and more Healthy New Year, Barbara
    • anne05078
      anne05078 barbara75667

      Posted

      Morning Barbara,

      Yes, unfortunately Prednisolone if taken for a long time does cause

      weight gain.  I'm never on them for long enough, but I do find I can't

      control my appetite when I am taking them....I gain 3lb after my April

      course.  Lost it again now though.

      It's only Prednisolone that gets rid of all the inflammation that's

      associated with Eustachian Tube Dysfunction.  Makes our tubes

      swell and can't drain....hence blocked ears !!

      The Flixonase Nasal, I think I've already mentioned are stronger

      than any of the sprays, I've tried pretty much all of them.  However,

      it say only be on them for 6 weeks, then have a break.  They seem

      to have worked for me, even getting back my smell and taste after

      years and year, all due to inflammation.  Brilliant being able to taste

      my Christmas Dinner this year.

      Anne

  • samantha_54151
    samantha_54151 barbara75667

    Posted

    Having good humitdity levels will help massively aswell as using a steroid nose spray before going to bed.

     I  originally removed carpets, rehomed my cat for two months, altered my diet - non of these worked, then when I went to bugaria for a week my symptoms improved a lot. Come the end of September my symptoms worsened - I realised I never had my windows open, I don't have central heating only storage heaters so often didn't have any heating on, also I was drying my clothes on maids in the home. Since I've realised what the cause of my allergen rhinitis is ive been able to improve my health and I'm hoping all my congestion will go in the next year.  High humidity plays havoc on your health!!  Opening windows, and having heating on is so important. 

    I have noticed that too much dairy doesn't help and if I get stressed or over tired I seem to get worse too, obviously these three effect my immunity. 

    Good luck. 

    • Deemac7949
      Deemac7949 samantha_54151

      Posted

      you r right humidlty does reek havoc along with all extreme weather changes. I am going through a extreme cold front in my area and I have been having a rough time for a couple of days. Stress does excerbate the situation but it is hard not to be stress when u feel like this for so long.  just so frustrating. I have stopped dairy as much as I can. trying every thing lol
    • barbara75667
      barbara75667 Deemac7949

      Posted

      Hi everyone, wonderful to know that you all understand and didn’t realise so many of you have same problems and not just in England. Have just got back from the Peak District where we rented a cottage, the air was so pure, it started snowing so we cranked up the heating and the dry warm air helped me so much, helped me sleep too. Thanks for all your tips, Barbara x
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