ETD and Cant Cope

Ears, nose and throat
1

I have just joined this page and I feel almost relieved to see that other people struggle with the things I do. I have been suffering from ETD for about 2 years. But recently feel like my life has been taken over by my ETD. This last episode is the longest I've suffered (4 months). The pressure and pain in my left ear is immense, and my left nostril feels like it is going to explode. I am using Flixonase nasal spray but it is not making ANY difference at all. Any advice or someone else who understands would be great x

2

Hello Sharonmac.I sympathise so much with you as for about a year I was told by a specialist that I have ETD & that there isn't a cure.I've had xrays & MRI done & they show zero,but the pressure is huge & some days almost unbearable. Like you,I've found nasal sprays do nothing,but sometimes if I inhale steam from Olbas oil which helps a little bit.

3

Hi SharonMac.I had ETD about 4 yrs ago....specialist put me on Flixonase - it didnt work for me either. But after about a year it went away of its own accord. A few months ago I had ETD again - in both ears. I have spent ages reading up about it and discovered my own cure - steaming, once or twice a day for about 10 mins (this helps clear the tubes), chewing gum (this opens the tubes) and using vicks inhaler and vicks vaporub (i use the inhaler during the day and put the vaporub under my nose at night). Also - keep hydrated. I have also been using a saline spray up my nose to keep my nose clear and clean. The important thing is to find out WHY you have ETD. Attacking the symptoms is one thing, but if the cause of your ETD is not tackled then it will not get better. You need to find out if your ETD was caused by a sinus problem, (if the sinuses dont drain then the tubes will block up) or by allergies (ie hay fever) by nasal problems (such as deviated septum, nasal polyps etc).Doctors in the UK are really really rubbish with ETD problems - but ask for a referal to an ENT specialist.I am seeing one privately this Friday and have a long list of questions re ETD - I can report back on this website this weekend.note - many doctors and specialist will routinely put you on steroid sprays hoping that they help, but often they do not.Also, with these sprays it is important to know how to use them - because if you do not use them correctly they wont work. You need to dip your head forward, angle the spray outwards (towards your tubes) and sniff the spray in. Also if you are chewing at the same time as spraying then your tubes will have opened up so the spray goes into them. None of the instructions I have read tell you this.

4

Very sorrow Sharon. I've had ETD for 30 years since flying home from Hawaii with a cold many years ago. Am lucky to have the House Ear Clinic here in LA and have seen them. Nothing much helps actually. Had the balloon dilation and I don't really see a change. The tube they put in two months ago got infected and had to be removed. Now I have a hole that won't close in ear drum !! It leaves me with dizziness and loud hissing noises. Who ever thought an ear could change your life so much ? I feel for you. This group is very supportive ! Has anyone had a tube removed that won't heal ? Fluid builds up, then comes through the hole and drains !! Yuck I'm not sure what is next. Going to ENT later today.

5

Do you get the nose pressure too? Before this bout of ETD I had a runny nose and was sneezing even though I didnt have a cold. I have since found this is called rhinitis. Apparently there is a link between this and ETD.

6

Hello Again all. I've read them with interest & would add that I've now been told by a specialist that I actually don't have ETD but have all the symptoms & huge pressure in my head & slightly unbalanced on my feet.I queried with the specialst what I do have & his reply was "we don't have an answer to everything" I fear I have to agree with Mark in his opinion of doctors in the U.K

7

I don't think I have been using spray correctly so will do as you advise. A year ago my ENT doc did put camera up my nose and found nothing. Should I request other tests?

8

I have a runny nose, stuffy blocked nose, sometimes a bit of a sore throat. And yes, this can cause ETD because a blocked nose will prevent the eustachian tubes from draining. However, the nose problems may be a symptom too, just as the ETD is -it may not be the cause

9

Hi Sharonmac. I would request more tests. The camera up your nose should have ruled out polyps and nasal septum issues. Allergy testing may be worthwhile, though it is often difficult to pinpoint the exact allergens. I have heard people suggest that acid reflux can cause ETD -do you suffer from that ?

10

I look forward to your post over the weekend with great interest

11

Hi Michael - have you tested for migraine variant balance disorder ?That can cause pressure in the head, ear etc and will make you off balanced or dizzy. Do you have periods where you are ok for a while and then not so good ? This disorder can be triggered by certain foods, stress etc

12

Hi Sharonmac,I do have a runny nose but it's not a bother to me as it's quite slight.Sometimes I feel I'm going to sneeze & then it doesn't happen.I'm assured that I don't have ETD ,but the pressure inside my head is very debilitating,but thank goodness not painful.

13

Hi mark28147.Thanks for your interest.I don't have migraine or suffer from headaches.I never have a day that the pressure relents.When I wake from sleep it's barely there,but after about ten minutes it really kicks in & it's with me until it's bedtime.

14

Hi Michael. You dont have to have the migraines or headaches to have migraine variant balance disorder - some people have them, others do not. One of the common symptoms is head pressure - another is problems with your balance, and problems with your ears. It may be worth cutting out the key trigger foods for a week and seek if you feel any better. They are - caffeine, alcohol, citrus, chocolate, banana, pineapple, msg, salami and other cured meats.

15

Hi Michael , Whats Olbas Oil and does it work ?

16

Thanks for that Mark.I don't drink alcohol,eat citrus,bananas,pineapple,salami .Don't know what msg is.Also only one cup of regular coffee per day.

17

Hi Michael. Why not try cutting out the coffee for a week. That includes decaf.MSG is mono sodium glutamate - a flavour enhancer used in chines food, soups etc

18

Hi sharon,

I've used a couple of different steroid nasal sprays and they do nothing for me either, but that seems to be the default for GPs.

I changed my GP and got a referral to an ENT specialist. The specialist recommended using Otovent balloons, you blow up a balloon through your nostril to open the eustachian tubes. You can buy these online, at least then when you get to see a specialist you've already tried the first step.

I've been using them for a couple of weeks, but i'm not sure they're making a difference. Although my vertigo has reduced, it been 3 months and it's just slowly reduced naturally.

Good luck, I know the feeling of pressure is unbearable and feel so sorry for anyone dealing with it.

19

Hi Roy,

Thats the surgery i had done here in Canada Balloon Dilation to try and ipen the Eustachian Tube it wasnt covered it costs 5000 anyhiw it was unsuccessful i was sent to this surgeon @seejng my ENT

Wish i had knwn about what youre talking about i would of tried that first before ungoing the surgery 😔😔

20

Thanks for the coffee advice Mark..I'll stick to tea instead & see if it makes a difference.Also the explanation of msg