Doctors don't know what's wrong with me, it's been 3 years now.

I can't get over my symptoms, and it's been 3 years since they began! I can't live a full life like this; I feel like I'm slowly going to go mad at this rate!!

I've seen ENTs, Gastro specialists, GPs, Emergency Room doctors, I've traveled across the country and ordered online tests out of desperation. I have no idea what is happening to my body, and neither does anyone else I've seen.

- My nose is permenantly blocked and almost impossible to breath through. If I lean back in a seat, take a hot shower, excercise or sit in my car it gets worse, and has begun to get worse since sunny weather set in. I have no known allergies, and even if I did I've tried 5 different things which have all failed me - right now I'm on Flixonase and Cetirizine Hydrochloride. I've tried other allergy meds too, as well as sinus rinses and decongestants, steam inhalation and plenty more besides - if you suggest it, I've tried it.

- When things get at their worst, I get so much post nasal drip my airways block and I literally cannot breath properly. It isn't hyperventilation; I know how that feels. My body cannot get enough air, so it makes me gasp. I have to hunch over to get any air in - if I sit hunched over at a computer, things improve. Only "Oxymetazoline Hydrochloride" forces opens my sinuses, but I still don't get a runny nose and when it wears off, things become twice as bad as before. Also this stuff works for everyone, not just me, so it doesn't assist in proving what I have.

- I haven't had a runny nose for 3 years, which means I can't clean out my sinuses when something like this happens. It keeps me awake at night, gives me migraines and makes me tired and depressed.

- On top of that, I'm struggling to prove I have LPR reflux to doctors, which can't be controlled either. We're talking constant burping, some acid burps, lump in throat sensation and more besides. Every single medication diet change and lifestyle change I've tried has backfired on me. There is NOTHING I can do about it.


I want to be able to walk, talk, breathe, exercise, laugh and enjoy life like a normal person, but right now I'm scared to even get out of bed - and even then sometimes the problems follow me into bed too! I have no idea what is happening to me, but it makes me scared to keep living. I'm afraid one day the airways will block up so much even the emergency rooms won't be able to save me, and I dread the arrival of summer now in case it has something to do with heat.

I know for a fact it isn't an allergy. I get hayfever but I know how it feels when I do. I'd get an itchy throat, itchy eyes, and most importantly, a runny nose. That's not bad at all, I could live with that, but I haven't even had that for 3 years!

An ENT scoped my nose in winter - too late to catch some of my symptoms - and said nothing was wrong with my nose. Of course that means nobody believes me now, and everyone says all my symptoms are to do with anxiety. Surely that's nonsense? How can anxiety cause so many specific problems, under such specific conditions, and especially when I'm NOT ANXIOUS about life?!

Post Edited (Daxter) : 3/22/2015 5:22:21 AM (GMT-6)

Jennhep said...
Sorry for all you're going through! I have been having progressive problems with my nose for about 3-4 years now. However, after seeing an ENT, I founD out I have a deviated septum and severely swollen turbinates that do not respond to Flonase, etc. I am having a septalplasty and my turbinates shaved down next month.

It's worse for me in the winter for some reason. Causes inner ear issues and pressure when I lean over. As well as muscle strain over my eyes which effects the vision at times. It's miserable and I can completely sympathize with your situation. How long have you taken the Flonase and Zyzal? In my case, both together made me worse- too drying. Flonase alone has been helpful,, but not a cure all. I'm also going to see an allergist at the ENTs recommendation next week.

Maybe a second opinion? Did they do a CT of your sinuses to look for other structural problems? How about a naturopath or chiropractor who specializes in cranio-sacral work? I did read once how anxiety can cause some pretty weird symptoms- stuffy nose being one. It doesn't seem possible, but I read a neurology article that said our brain cannot distinguish between something actually happening in the body or something we imagine is happening in our body. It interpretes it the same way.

Hope you get some answers soon.

Flixonase has been going for about a month now, but the Cetirizine has only been a few days. Having said that, I've taken it for much longer before. The same goes for other meds, most notably Sudafed, which never had any effect on me.

The ENT put some kind of camera up my nose, and also checked my voicebox at the same time. He said no structural abnormalities were shown in the nose, but I can't help but wonder. I didn't get a CT scan, and nobody in my local area specialises in what you've suggested - I'm very limited as to where I can go and who I can see, as I'm struggling with unemployment.

I wish he had spotted swollen turbinates - that could've diagnosed the cause of my reflux too, I learned-!

Dax-

I was told to not take any sudafed- it's too drying. Have you tried mucinex? That's what they told me to take if I felt full. It thins secretions, but you have to drink lots of water as it dries you out. Kind of ironic....

The camera would have allowed them to visualize everything well. The CT is mainly used to look at your sinuses. Some insurances or practices will not order one unless you have a long history of sinus infections unrelieved by antibiotics.

I am not a doctor, but my mother is an RN who has worked with ENTs for the last 10 years. Her ENT has always recommended gentle saline spray up to 5 times a day to keep nasal passages clean and moisturized. No need for the netti pot or large volume flushes unless ordered by your doc. I do my Flonase in the evening when I tend to stuff up the most. Ironically, it's also when my anxiety spikes.

Another thing that has helped me is a gentle yoga routine in the evening. Down dog in particular clears me up. At first I get a head rush on the first inversion, but as soon as that initial one passes, my nose clears. Pressure is lifted. I have no explanation why.

In my own opinion, I think you're drying yourself out too much. Try some oral and nasal hydration and maybe revisit your med regime with your doc. Good luck!

Daxter,

Hang in there. I just wanted to let you know that you are not alone at all. I've had medical professionals tell me 'it's all in the head' when they can't find cause.