so after my 2 year wait I saw an ENT consultant this morning.
I told him all of my problems and he said yes all of the meds you are on will help fix the problems.
I told him I’m having problems hearing lately, and my ear gets inflamed and feels like you’re on an airplane, I get ringing, and then there will be times where I suddenly can’t hear anything for a minute until it goes back to normal. He basically looked in my ear and said yes they look fine… 😬 I know they might look fine Dr but there is defo something going on with them!
He looked at my nose, yes you have a deviated septum, yes it does need surgery.. no I’m not doing it. Well why??? Because of all of the meds you are on and if you’ve possibly got Behçet’s then you may get an infection if we operate. I held my ground and told him I cannot breathe through my nose, I’ve waited two years just for the appointment. He sat quiet and said you need to get your rheumatologist to confirm that you can have surgery, I’ll send you for a scan for your sinuses and then we will look again! 😫😫😫 why is everything a fight???
clearly not planning on looking at my hearing, so I’ve just had to ring specsavers for a hearing test!! - anyone else done this?
So I can’t have a definitive diagnosis of Behçet’s, but they don’t want to touch me, and they all tel me the meds that I’m on will help if it is Behçet’s. So confused, so hating the health board and soooooo frustrated.
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Like you I have a deviated septum and ongoing problems with the hearing on my left side. The eardrum has concaved instead of being flat.
It sounds like I'm constantly standing out on a windy day or I'm putting a sea shell to my ear .....constant whooshing noise on that side.
As you say once you mention your medication no one wants to touch you, I've had a broken 5th metartasal for the last six months , due to the steroids im on affecting my bones apparently , saw Orthopaedic surgeon this week and they want to wait another 3 months.....if it ain't healed now I don't hold much hope it'll heal.
It's Very frustrating in Wales with no Centre of Excellence, and my Rhuematologist who worked at one has now left my local health board.......really struggling since he's left.
Good luck and hope you get answers to your no doubt many questions regarding this Disease.its the gift that keeps on giving unfortunately.
I’m so sorry to hear this. I never realised that Bechets could cause ENT issues until today. I am at my wits end after repeatedly getting tonsillitis, and have been diagnosed with Chronic Sinusitis. I just wish things were looked at holistically rather than in isolation. Please keep us updated with how you get on with managing this side of your condition. I too have issues with my ears, and the ringing/squeaking is very frustrating. I had a hearing test at Boots around 2 years ago, and turned out to be fine but it is a very weird way to ascertain your ability to hear things. You’re in a silent room, alone, and are told to listen out for things. Given that listening is taking up your full concentration, you’re obviously going to come across better than you do in the real world or on a day you’re having more trouble with your ears. Take care of yourself. Hoping you get the support you need!
Thank you, I will keep you up to date! I’m unsure of any outcomes at the moment but yes it is hard especially if you are you’re not in a flare too. It’s all so confusing and hard to understand x
I have always suffered ftom blocked ears or throat from wax build up and was hard of hearing through school. I still get problems as an adult but I think it's because I am quite small. I get a lot if tinnitus and pain in the ear. My nasal passages are usually swollen to a slit and I have to use a steroid spray like Beconase daily and I flush with saline every night. I suffer from allergies.
I also have a significant deviated septum ever since I stayed in hospital and the nearest ladies toilet had a broken light and we had to pee in the pitch black dark. One afternoon, I bent down to pick up my knickers round my ankles and my nose bone below the nostrils smashed really hard against a sanitary bin and almost knocked me out. I wish I'd made more fuss because the deviation is causing a lot of breathing discomfort.
I reported it to the charge nurse after it happened who burst out into hysterical laughter and I said, I've been really hurt, but I was told I was fine. I think I'd crumpled and broken it with force but wasn't visible on the outside so not discovered until I had an ENT inspection to find out why my nose was whistling and noisy.
I have always had nasal swelling but the deviation blocks it completely if I don't use beconase.
I suffer quite a lot from post nasal drip and snoring. I skwsts have quite a narrow throat and I'm small but exacerbated with weight gain as well as after other drugs that can cause swollen tissue there and dry mouth, nose and throat .
I have pituitary failure and cannot concentrate my pee, and as a result lose vast amounts of fluids and that causes me to have very little saliva and a very dry nose.
I frequently get cheek and tongue ulcers. And nasal ulcers too.
I also suffer from blocked tear ducts so my eyes spill tears down my face and my nose us dry. My eyes are wet and sticky.
Many of my health problems from deviated septum to cataracts and leaky bladder and faecal incontinence that keeps me isolated and housebound because poop just drops out could be fixed but I have had such a severe reaction to surgery in the past nobody wants to go a surgical fix for fear of me losing whichever organ it is, or suffering film such severe scarring the thing no longer functions.
If you want some improvement yo ENT symptoms a simple remedy is to get a soft silicone nasal bottle prescribed, and to clear your nasal passages once or twice a day with a saline solution. Saline has a drying up of mucus effect and stopping wax or mucus ftom blocking the throat can greatly help blockages up in the ear too. If you suffer from frequent ear canal blockage along with ringing,there's things you can go do to help like:
1. Protect your ears with cotton wool when washing your hair so water or steam doesn't trickle down.
2. Use warm Virginia olive oil, a few drops (not hot just skin temp) into the ear canal softens wax and allows it to drain naturally down the ear into the throat. I sometimes pour a bit of warm wax onto cotton wool and place it in the ear and it slowly transfers to my ear canal.
3. Totally give up any kind of digging around with a cotton bud, that foes damage and causes blockages. I clean the outside of my ear only using a bud. Nowhere near the ear holed.
4. Consider using a hay-fever nasal spray, ask your GP, because it is often absorbed and can reduce allergies or inflammation in other areas too. It has a side effect of drying ENTs out, and if you have waxy wet ears it might help.
5. Like I said above, a saline nasal spray can get rid of any gunk that dripped fown ftom nose or ear jnyo the throat. It all has central plumbing.
6. a. Look closely at whether you are using any earbuds or headphones as even on a lower volume, sound was never supposed to be so close to your ear drum and a reaction to sound that close is for the body to make earwax as a barrier.
b. Also, wearing headphones for even a short time provides a warm moist atmosphere for bacterial and fungal infections. Ask a GP for antifungal meds for the ear if you think it's mouldy. It will smell like a damp cellar often. But if it smells like glue, that's normally a staph bacteria.
c. Keep any earbuds immaculately clean. I am often shocked when people tell me they font clean earbuds every day. Bits of dead hair and skin cling to them blocking your ear or fall off and form wax. I clean my earbuds (which I need as I can no longer see books) every single morning. I take off the small rubber tips and use a cotton bud and glasses cleaner, which is isopropyl and sterilise the tip and half the bud upside down and use a soft brush to get debris out.
d. Consider cutting back in headphones altogether because I have found since I've been listening to audiobooks all day, my tinnitus has increased and hearing has deteriorated. Everyone who uses tech with headphones is going to have much more hearing deterioration in older age.
If you have an immune disorder you will find specialists, out if respect for your health, are going to be less willing to carry out minor non life-saving surgeries because there's a higher risk of harming you than people in the non immune disorder population. My GPS won't approve my cataract removals until my vision less is very significant because if I get optic neuritis or scarring, I could end up with very much worse vision.
Also, research your meds and see if a combination of them could be causing tinnitus. A common cause is taking simple aspirin. Other anti-inflammatories, painkillers and alcohol can cause ringing in the ears. If you suspect that the combination of meds taken at the same time is causing ear ringing, you might find staggering certain meds to different times of day has a lesser effect on the ringing.
Stress can cause blood pressure changes and that can cause noise in the ear. But also, your brain can zero in on the noise and make you perceive it more. I find in a Quiet room it helps if I have very low volume tv or radio in the room helps me concentrate less on the tinnitus.
Tinnitus is a kind of ear damage where the little cilia can get damaged by environmental noise, your brain perceives a drop in volume, so it rps up it's perception of noise to compensate so that as well as deafness you also hear extra noises that aren't really there.
Years ago my boyfriend was diagnosed with tinnitus from being a touring musician and was given a heating aid that emitted white noise. You can get apps that will help retrain the brain with ambient type sounds like wind or rain or sea washing up a sandy or single beach.
If you have a Samsung phone like I have, there is an option in the settings to customise your audio and it goes this by carrying out a heating test. It emits low beeps into your ears and you click yes or no as to whether you can hear it. It then will show you a chart of where your threshold is, and will show a line in the bar chart across all decibels range of where normal hearing is gor your age group compared to your own hearing. I periodically do it to see if mine is better or worse.
On Samsung go yo settings, search "Adapt Sound" and choose Test My Hearing. You will need to put headphones on/in and sit in a Quiet room. Tinnitus will make you miss some beeps too. Everybody misses the bottom ones unless you're about 5 yrs old, and the beeps are randomised and volume increases to where you're able to click <Yes> for "I can hear it".
Lastly don't underestimate the power of acceptance. When I was younger I used to get furious about doctors not being able up hi me and would often think, they're not listening to me or even, they don't believe me. This isn't true and they often have your best interests at heart and know when thry can help and when it's unlikely. A couple of decades on, I realise a lot of the interventions I pushed to have just made me worse. So, if something is fairly min life threatening I will see someone just yo see if they can help but if they're not going yo, I met ho of the crushing disappointment and find a way of accepting what's happened, not dwell on the unfairness of it, and bring incredibly grateful/thankful it isn't very much worse and isn't killing me.
However, this can infutiate your loved ones who say "I don't know how you can put up with that symptom, you can't carry on like that, why don't you insist on another referral etc etc. I have had to accept quite a few things and found other things I can do. I know my life isn't the average ordinary kne everyone elses is, but it doesn't mean I can't be extraordinary in my acceptance of certain things. I really have let ho a lot of angst and depression over the long list of things that don't work in my body. It's frustrating, but I'm not devedtated like I used to be. And without the pressure uo "get myself fixed " there's a lot less likely of worsening the symptoms with stress.
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Does any body else have urinary problems?
Diagnosis and new treatment... confused
Likelihood of developing eye problems 
Writing to the ME Association
