It’s nice to hear some positive stories! Glad you are all coping well.
I’ve come down with a chesty cough now which just really sets it off for me today.
Can prednisone lower immune system? I dont know if i should take any OTC medication with being on Prednisone.
What i really dont understand about the Tinnitus is that it’s only ever at peak around 6am. Where it wakes me up and seems to radiate to the other ear! When i got to sleep its relatively low so i dont know if its pressure lying down or what.
Making me think its something more sinister!
Anyway i really appreciate the advice and support. Such a great community on here.
Considering ive been really close to suicide this have helped me somewhat to stay positive
I am delighted to hear you’re now feeling more positive @Sophs50522, please try and stay that way! You will eventually realise how adaptable you can become, it just takes time, and there is plenty of support on this forum, should the need arise… Take care, cheers Kev
Ive noticed today that although my Tinnitus have spiked all day ive slightly developed Hypercausis in that ear with high pitched noise and when i shout. Is this a sign some hearing is coming back it not?
We all handle things differently but to me the key to dealing with things like this is not to focus on it. Just acknowledge that you’re thinking about it “again” and move on. Be prepared to do this A LOT. Eventually one can see humor in how good the mind is at coming back to things. I have roaring tinnitus everytime it comes up in a forum discussion but it’s not an issue the rest of the time.
You are welcome @Sophs50522 I am unsure if your hearing will improve or not, it’s a waiting game! Tinnitus IMO, tends to spike randomly or for no apparent reasons, it just happens! It happened last night, before bed, I immediately went into relaxation mode, and within 20 minutes it was gone, by the time I hit the pillow…Over the years my Tinnitus has altered drastically, at one time it was heavy static in one ear, and a washing machine on full spin cycle in the other ear, now it’s heavy white noise… In fact, I actively seek out my Tinnitus, and listen occasionally for any subtle changes, I am totally relaxed about tinnitus Cheers Kev
My T have calmed down this evening and ive now got that Hypercausis again prior to hearing loss. If this is a good sign or not I really don’t know… I guess time will only tell.
What I can say though, it’s quite possibly the strangest illness ive ever encountered. Can’t quite understand what is going on in there!
But again thanks for the advice. Will stop waffling on now and just wait it out and really hope for a good outcome. Ive got 3 months to try and settle myself until I fly out to the US.
Tinnitus getting loud at 6am isn’t that uncommon. Does it settle down after a cup of coffee?
In regards to the tinnitus waking you up at night, keep in mind that it is biologically natural for us to wake regularly throughout the night. Normally we just fall back to sleep and then forget that we ever woke, but when the tinnitus is there then we notice it and think “oh, the tinnitus woke me up”. It probably didn’t, you woke naturally and the tinnitus is also there and because you are worried about it the worry keeps you from falling back to sleep. When you find yourself awake, remind yourself that it is not disordered for you to be awake, it is normal, and it is not unusual for the tinnitus to be there right now, it’s just right there. Try your best to just ignore it and go back to sleep. If you can’t engage in strategies to help that (noise generator, or whetever else helps you to sleep).
Tinnitus is imaginary.
It can’t hurt you. It’s in your mind.
I have dealt with tinnitus for 40-45 years. It can be maddening if you let it control you.
Try to get your mind off tinnitus and on enjoyable things. Run a fan or something a little noisy at night when you sleep. Distract yourself from the tinnitus.
I never really suffered with Tinnitus prior to the ear issue. If i had it was so mild barely noticeable unless I had been out drinking alcohol.
It usually goes away after i wake up and get about but for some reason my left ear ( the damaged one ) is just non stop ringing! The right have started ringing at night now and it scares me that the same thing is going to happen to that ear.
I try so hard to switch it off! Im really grieving my normal ears. I miss a decent nights sleep and decent hearing and wish i could just feel ‘normal’ again.
Tinnitus moves. It’s not really an indicator that the hearing in your other ear is going to change. Although there are also probably still changes going on in the damaged ear that will make things sound weird and different and random for a while. I’m sure that with the steroids if there was an inflammation it has already subsided, now it’s just a matter of time to see if the ear is able to heal significantly.
I asked about the coffee because when I try to quit coffee and go into withdrawal my tinnitus gets wild for a few weeks. Typically people will habitually drink coffee in the morning and your body gets trained to expect it with the result that you are usually experiencing symptoms of caffeine withdrawal early in the morning.
Have you booked an appointment with an audiologist?
Thank you Neville, I do often drink coffee but been having decafe recently because I read it could affect recovery. So maybe withdrawal could be making it worse? Obviously I was willing to trial anything at this point.
Thats good to know, I think the Tinnitus just makes me feel like it’s still inflamed but I guess that is like you said it’s probably the damage.
I think without the Tinnitus I’d have way more patience in hoping it would return.
I’m day 7 on steroids, got 3 days left. Im just hoping ive still got some time left to think positive.
Ive caught a chesty cough whilst the last few days which im sure have blown fluid into my good ear which have not helped my hearing!
I feel like I’ve had nothing but bad luck these last 2 weeks! Ive got an appointment with ENT on Tuesday where they will also do a hearing test before talking about tympanic injections.
Ive been told they will need to order them in though which is frustrating because they wont do it until ive had a hearing test.
Anyone in the upper latitudes of the Northern Hemisphere should probably be on Vitamin D at this time of year. I believe in the Nordic states they actually send it out to every house as a preventative treatment.
I’m on it this year and have avoided all the seasonal cold and flu season.
Yes. This is pretty typical for my patients, too. There’s not really any link between consumption of caffeine and tinnitus. However, anything that makes you feel bad will make tinnitus worse, so that includes caffeine withdrawal. As you feel better tinnitus gets better too. Similarly, drinking alcohol will typically make your tinnitus worse the next day. This isn’t necessarily a reason to avoid having a glass of wine with friends if that’s what you enjoy, it’s just the same as expecting to have to manage a hangover the next day–louder tinnitus is just a new part of being hungover and you manage it almost the same.
I still expect your tinnitus to calm down. But it takes a long time, particularly the first time you have a bad episode. I don’t say that to upset you, but so that every day when you wake up and your tinnitus is still bad you don’t think, “Does this mean it’s going to be like this forever?” It doesn’t mean that. To try to give you a bit of a trajectory, when mine first hit it was very loud and very upsetting for probably four months. Then it became just very annoying for another maybe 4-6 months. Then for two years it was still intermittently bothersome, but it was very manageable and once in a while it would seem to disappear completely for a while before I noticed it again. Probably by around the four or five year mark I was almost never noticing it. All that to say that even if your tinnitus is still bad weeks from now, that doesn’t mean that it will always be bad. But also, it probably WILL be bad for a while so you need to identify strategies that you can put into place now to help manage your emotional reaction to it. Additionally, it’s important to know that tinnitus gets loud in reaction to things that make you feel bad so that you can identify that it’s not actually something happening in the ear when it gets loud, instead you can say, “Oh, I see, it’s louder because I’m sick, it’s louder because I’m very tired, it’s louder because I’m upset.” All temporary states that the tinnitus will likely fluctuate with.
But yeah, it’s an indicator that damage was done now, not really an indicator that damage is still happening. It’s just a noise in your head. You kind of have to try to make friends with it.
Thank you Neville, I really do appreciate the support, it’s made me feel a bit better.
I had a really bad day yesterday but went to bed last night and woke up for the first time without having Tinnitus raging in my good ear and didn’t seem as obvious in the damaged one. I’m hoping this is little steps to revovery. If not, its made me feel better for the day either way.
I’ll be honest, this will take some time coming to terms with. It’s hit me really hard. But I need to keep reminding myself I am still only 9 days in and treatment hasn’t stopped yet.
Again Thank you for the advice and support. Much appreciated!
Have i just done something stupid, I put in an ear pod to see if i could hear anything from the affected ear and i heard nothing but vibration ( tinny) sounds. Now i don’t know if I just made my situation worse with Tinnitus! Arghhh!!
It didn’t. Your tinnitus will fluctuate. If it comes and goes that’s a good thing, it means that it’s more likely to go again in the future. Even if it goes away for a longer time, it will probably come back now and then. This is just what tinnitus does.
No you didn’t do anything stupid. The only thing unproductive you’re doing is overfocusing on this. Try to let it go. Thinking about it is not making you feel better. I know it is not easy to let go of it. When you start worrying about it, just acknowledge that you’re worrying again and let it go. Rinse and repeat multiple times. There will occassionally come times when you realize you weren’t thinking about it and it feels good. If you work at it, you will have more of these times. You might want to try reading up on mindfulness.
Cheers Kev