Newbie in Living Hell... :(

My name is Kelly. I’m a married 49 year mother of two busy teenagers. Ive been lurking on the forum for a week.

It’s now been two weeks of absolute hell for me and it’s hard to know I might be facing a lifetime like this.

I have no idea how I got mine. I am a paralegal and work in a quiet office and on the weekend I volunteer at my library.

I had flown two days earlier but I fly a lot and never had problems with my ears. I have allergies, high blood pressure and TMJ.

It started suddenly while I was watching tv. I could hear this high pitch sound over the tv. Very high pitch like a field of cicadas. It seems to switch ears too. I figured it would go away but after a week it didn’t, so I went to urgent care and she said she saw fluid on my ears and thought the flight might have trapped some in my inner ears. She gave me amoxicillin and 5 mg prednisone. I was having good days where voices would tune it out and bad days when it wouldn’t. I think I have the bad kind though because tv and even my bedroom fan make it worse. I don’t know how I can live without a fan.

After almost a week on meds there was no change so Thursday I went to an ENT and he was so dismissive. He looked in my ear for a split second each and said there is no fluid they look fine we will schedule you for a hearing test. He asked me no questions about my history or nothing. I told him it was so loud it was affecting my life and he said it’s stress. Pretty much live with it. I told him I have TMJ and he said that has nothing to do with it. I pushed him a bit about whether there was anything that would help so he put me on 20mg prednisone for 7 days no tapering and scheduled me for a follow up this Friday. I never want to see this doctor again but the ENT my son sees for allergies can’t get me in for a month.

I almost had a literal breakdown after.. so Fri I went to the ER. My blood pressure was really high from stress. They ran blood tests and did a CT and it was all normal. No nerve damage. The ER doc was very kind but again it’s send you home live with it. She did give me a week of Xanax to help with my anxiety. I’ve never taken it before but I’m desperate.

Yesterday was a good day. I was able to tune it out for the majority of the day but this morning it’s back with a vengeance, maybe because my husband had the fan on last night??

I get now that I’ll have to live with this but I’m not sure how. I’ve always craved quiet time. I can’t even read, which is my passion. My only saving graces is I have a support system... my husband, best friend and Aunt all live with this...and they actually do. All three have full lives. Yet I’m skeptical theirs was/is as bad as mine but that’s because I’m in the selfish stage of this disease right now.

I’m so overwhelmed by all the information out there. I don’t know what to do. Do I see the dismissive ENT next week or wait a month for the other? Will it hurt to wait a month? Do I start taking supplements? Will the prednisone even do anything? The ER doc said be grateful it could be worse, I’m not dying (in the nicest possible way ) but that’s not true. My old life is dead and it’s left me with this horrible noise in my head.

This is so long and rambling. I’m sorry. Thanks for listening.

 

Hey Kells,

Ive only just joined this site also.

My wife had a bad injury in the police, with TMJ being a part of it, required surgery. She never had a problem with T though.

That being said, if yours is coming from some other source, and so long as it isn't JUST stress related (stress being something you can try and work on yourself) then the bad news is you may be stuck with it.

I also used to read a lot, through my whole life. After a while you can try and ignore it, but it will always be there. At least until someone actually manages to create a cure.

Hopefully you only have a temporary problem and it clears itself up.

 

@Kells I have had tinnitus for 30 years. There are some Doctors that follow the cook book of doctoring and have no empathy. Personally I would never return. That is your decision. Sounds like your ENT was a graduate of some offshore purchase diploma.

Did you research the doctor's credentials? I pray your tinnitus is temporary or will subside. I also pray for better treatments or a cure!

G-D bless.

 

The most common cause of T is noise injury, and the airplane ride may have caused this. In many cases, the spike in T can be delayed from the noise exposure. Of course it could be from the TMJ, stress, drugs, or another cause, or even multifactorial.

You should take the prednisone as it may help.

Sounds like you need a different ENT.

Be sure to protect your ears from any additional noise exposures. Be sure to not use headphones.

Hope it gets better soon for you.

 

Sorry hear how you're struggling. I'm a tinnitus newbie, too. Two weeks tomorrow after a manager did something stupid at work that I probably have no come back against because it's not really worth a lawyer pursuing, since I have no obvious physical injury.

I've managed to find ways to tune it out already (though I do recognise mine is quite low level). I get really anxious about it, but breathing deep and intentionally refocussing has helped (I have to do a weird eye-roll thing to help redirect my brain - lol). I've also been listening to brown noise (not on headphones, just playing ambiently) which I've found really helpful. White and pink noise were too harsh for me.

When I first put on the brown noise I have to have it quite loud to obscure the tinnitus (not dangerously loud, but just a couple of + ups on my iPhone volume button), but after about a minute I can lower it so it really is just purring in the background and still obscures the tinnitus because my brain still focuses on the brown noise INSTEAD of the tinnitus.

It will get better with time, or at least feel better, I am sure.

Good luck and hugs.x

 

I am sorry to hear about your doctor experience. This is very normal for people with tinnitus unfortunately.

I would suggest going to see another ENT. You mentioned you have allergies, TMJ, and stress. All of which can exacerbate tinnitus. Go see a dentist about TMJ, they might give you a brace.

This is in the very early stages of tinnitus, so the chance of it going away or reducing is VERY high.

Since you don't have noise induced tinnitus, do you take any medication regularly or take anti-inflammatories?

If not, I would suggest seeing a neurologist potentially to rule out any or causes with your brain.

 

@Kells Don't be afraid to voice your feelings on this board. I believe it can help. We are all frustrated.

 

@ShawnK. Thanks for replying, I appreciate it a lot. I pray it clears up too for all of us!

@Ken219. I was so desperate for any help that after my son’s ENT had a month’s waiting list I googled ENTs and came up with this guy. He spent no time asking me questions. Said it might go away, it might not. I was floored at how uncaring an ENT was about this. I’m just afraid I’ll miss some sort of “window” people around here have talked about if I delay seeing another ENT for a month. That appt wouldn’t be until June 26. I pray for a cure too. This has opened my eyes up to a whole new world of suffering I didn’t know existed. The three closest people in my life don’t talk about theirs. Part of me wonders if that’s the “cure.” God bless you too.

@Digital Doc. I definitely need a new ENT. I just wonder if delaying any treatment for a month will be detrimental. ☹️ I’m so overwhelmed right now.

@JaneTC. That is terrible that someone did this to you. I’m so glad yours is low level, although equally maddening I’m sure.

Unfortunately I think I have what they call reactive tinnitus (I don’t the terms yet) where masking doesn’t help but amps it up. I’m hoping it’s just because my ears and brain have no idea what’s going on yet. I’m glad you can mask. It would be so much easier if my fan would mask it at night so I could at least sleep. I dread trying to fall asleep.

I have to remain positive like you that it will get better in time. I wish you the very best too. HUGS

 

@Jack Straw Thanks so much for your reply. I do actually have a bite splint but like a moron rarely wear it. I’ve had TMJ since I was a teenager so never in my wildest dreams did I think something like this could happen. Of course according to my ENT that couldn’t cause the ringing. *rolls eyes*

You actually brought tears to my eyes when you say my chances are high in it potentially reducing... it gives me something to hold onto. If I could just get it down to where masking would help, I’d have so much hope.

I only take blood pressure med and have for years. Benazepril hydrochlorotniazide for 10 plus years without problems. I was on Bactrim in Jan for a bladder infection and saw that was a bad one, but that was one off and I don’t even think I finished it. Only the prednisone now from the ENT.

I did have a CT scan that was negative in the hospital. No nerve damage but she said she’s not sure about inflammation. I do see a neurologist for intermittent neuropathy after my hysterectomy 7 years ago and he blames EVERYTHING on my blood pressure. I’m sure he would this too but if relief doesn’t come soon I will make an appointment with him too.

Thanks again!

 

Well I looked at the list of bad drugs and my blood pressure medication is on it. I’ve been on the drug for ten plus years... I’m probably doomed.

 

@Kells You might find that the sound settles a bit, it does happen. You also have no way of telling if it’s loud in the beginning because you’re monitoring and do not have perspective on it. It will sound loud to begin with.

I’d love to press the fast forward button for you. It is a real struggle in the begging.

Your old life is not dead, parts of it might be different if the tinnitus sticks around. You’ll get used to a new reality (I can still feel my anger at having to get used to a new reality as my therapist called it at the time). But it will become your new normal. The fear will gradually subside.

It is thought TMJ can cause tinnitus - Dr. Susan Shore is carrying out a trial on treatment for somatic patients at the moment.

Your ENT should know about the possible correlation; 1 out of the 3 ENTs I saw also told me there was no correlation with my jaw and it was purely neurological.
I’ve had TMJ since my twenties and also developed tinnitus (with no hearing loss) out of the blue. Having said that I also had a noise exposure the day I got tinnitus (albeit not a hugely remarkable one) which meant I dismissed the jaw cause for ages. Now I think TMJ had a part to play and should have gone back to the splint sooner. I didn’t for various reasons...

As I said in the beginning you are so early into this journey and if after a couple of weeks you have managed to tune it out for part of the day, that’s pretty good going...

You’ll have more and more of those times. We’re so used to going to doctors and getting fixed or treatment options that having nothing feels so depressing. Their dismissive attitude to tinnitus is not uncommon I’m afraid.

Keep busy and engaged even if you don’t feel like it.
Stay strong, this is the hardest part.

 

I doubt delaying the appt with the ENT to find another one will change anything as you are already on prednisone.

Dont stop your BP med, but make an appt to see your doctor for this, and see if it can be changed. Bring a list of ototoxic meds so you can choose a better one.

 

If it's not noise induced, there is a very good chance of it going away, esp if its low. But no one can know for sure since there are no definitive answers for this condition.

You mentioned you had TMJ since a teenager. Has this recently gotten worse? I.e you started hearing clicking/grinding noise? The TMJ join is right next to your ears so there could definitely be a connection there. Inflammation in the area / pinched auditory nerve could all cause T

 

Thanks I think I will wait until I can see the other ENT. A month seems like forever with this but I doubt he will do anything for me so what’s the point.

Yes blood pressure appears to be a double edge sword. It appears to be a culprit but the meds that help it can be the culprit too. This really sucks. I’m so sorry for all the people who have suffered for years. I really took my quiet time for granted.☹️

 

@Kells

Yes, I think we all took our quiet time for granted.

Be sure to protect from any additional noise exposures, as this can get worse. Thin includes loud restaurants, bars, concerts, headphones, power tools and screaming kids.

 

Unfortunately it’s not low. I’m in a very loud field of cecades. I haven’t had a hearing test yet but I had no noise induced trauma when this happened. I will get a hearing test next month.

I’ve always heard clicking grinding noises but lately my husband said I’ve been grinding my teeth a lot. Last year it actually made my lips and tongue tingle/zing. I got a new splint which helped that and then I quit wearing it as they are not the most comfortable. That was probably a stupid move but I had no idea about tinnitus then.

 

I will definitely do that. Thanks! I’ve been carrying earplugs with me. I do work in relative quiet which is a bit of a nightmare but I hope may help with healing in the long term.

 

I don't mean to freak you out or cause you further distress, but blood pressure medication is knowm to cause and exacerbate tinnitus as well.

Perhaps talk with your doctor about alternatives that are not as ototoxic.

The good news is, if your tinnitus is caused by medication, you have a better chance of it going away vs someone who had it noise induced. Medication induced tinnitus usually will go away after medication is changed or stopped. I don't suggest changing or stopping medication until you talk with your doctor.

 

The quiet is good for the ears, and be thankful this is a favorable job without serious noise exposure. Be sure to crank the phone volume down to a minimum, and avoid using a headset if possible. Speakerphone is best, but not always practical at work.

I carry earplugs with me everywhere just in case.

 

I will definitely talk with my doctor. I don’t think this dose/medication has been working for a while anyway. It’s been running high but my lovely doctor retired and I can’t get in to see my new one until next month. If I can cope for just another month I might get some answers.

Thanks again to you and the others so much for taking time out of your day to talk to me. I appreciate it so much.

 

Yes I am going to start carrying ear plugs everywhere too! I can’t believe how I took my precious ears for granted.

 

At least he gave you the prednisone. It is the first line of action.

 

Many doctors don't offer prednisone. I think most people think ENTs don't do anything and I agree. You have to treat it yourself.

NAC and magnesium is good to try and protect hearing and ears, hopefully.

I used to describe my sound as cicadas, too. Now, my tinnitus noise is more higher pitched. I think if people don't complain about their t, it not as loud or as high pitched as others. I know some people here won't agree but it's the only thing that makes sense to me.

 

Yes I will give him credit for that but he wasn’t going to do anything until after my hearing test this Friday. I pushed him by telling him it was so loud it was almost unbearable and then he said well we can start you on prednisone but it’s probably stress making it so loud since I didn’t have any acoustic trauma.

 

Getting louder is my biggest fear. It’s already so loud to me I’m not sure I could handle it. My husband who suffers(he also hears it over tv from years of work as s machinist) says I need to stop focusing on it and make it a non issue. I’ll get used to it faster. I can’t discredit him because he’s living with it too but it’s so new to me it’s all I’m obsessed with. This is honestly the scariest thing that’s ever happened to me.

 

Shocking.

Often treating TMJ results in getting rid of tinnitus.

In any case, you need to wait 2-3 months. If it begins to fade during that time, it will likely continue to fade. You want to make sure to not hurt your ears during this vulnerable time (e.g., don't do microsuction). Check out
https://www.tinnitustalk.com/thread...eone-else-who-has-tinnitus.26850/#post-307822

 

@Kells, your husband is right, don't focus. Kells, sorry there is no focus switch so it is very hard not to focus. Hopefully as time goes on it will be less intrusive. G-D bless.

P.S. I'm in my 4th relapse and it is always back to square one. I just panic less and still cry.

 

That’s definitely what makes me want to not go back to him. Even if mine is not TMJ related he still dismissed it and TMJ is listed everywhere I looked when I went for info.

Thanks for the link! I’m really protecting like crazy!

 

I am so sorry about your relapse. This is such a monster condition that I never even knew existed until 2 weeks ago. I’m glad you don’t panic but it sucks we have to relapse at all.

Right now I’m one good day two bad days one good day. It’s ridiculous. I want all good days especially since I know they exist. I don’t get this condition at all!!

 

Examine your patient history and you will eventually come to a conclusion containing substance that cannot be revealed by objective tests. Any and all assessments that are currently in use by physicians cannot diagnose tinnitus objectively. So... have a review by yourself of things like:

• Noise exposure
• Ototoxic medicine
• Illnesses
• Trauma

Looking for answers is 99% futile unless there is a specific underlying medical reason for developing tinnitus. TRI has produced the most extensive flowchart ever created on possible causes and their related diagnosis – search the forum if you are interested.