Newbie in Living Hell... :(

[Starthrower]

I only take blood pressure med and have for years. Benazepril hydrochlorotniazide for 10 plus years without problems.

So sorry you are going through this. Regarding your high blood pressure medication have you noticed if the pharmacy changed manufacturers? Especially if it is generic. There was a special on blood pressure medication my husband takes and it was stated that one should immediately go check the medication out with his/her doctor because that particular medication (from India) had several reported issue cases.

 

[Bill Bauer]

I'm really protecting like crazy!

It is impossible to avoid setbacks and spikes. But you definitely can do what you can to minimize the chance that you get exposed to one of those loud noises, and that should be enough (everyone who got better has had experiences of being exposed to noises and it interfering with their healing, so don't get too upset when you get exposed to noises and get a spike). Also please keep in mind that trying to protect one's ears can itself get debilitating.

this behaviour hasn't stopped. The behaviour has actually gotten worse (some of you will read this with a 'WTF is wrong with you' reaction, and that's fair enough, my own family say it to me regularly). Nowadays, I am double protecting in the house and out of the house, in my car (I still drive as I have to for work) and when walking the dog. I listen to the tv and films on subtitles and with no volume. On the rare occasions that I watch something with the wife that requires volume, I can't hear the volume anyway through the double protection. I sleep in earmuffs as I can hear the road outside through the single glaze windows. I take baths and don't shower - if I have to shower it is in peltor muffs. When washing my hair, I used waterproof 'swimmers' earplugs and take great care not to make undue noise and splashing. I don't go out really much any more. I have friends over but make excuses not to go out to restaurants or places where it could be loud. I have even started saying no to golf (sounds stupid, but I have). My world has become a lot smaller. I am getting chewed up inside now as it is my brother's 30th birthday tomorrow and his wife has organised a meal for friends in London. I'm invited, she even consulted me on venue and booked a private room, but as it gets nearer I know that I will likely not go. I want to go, but I feel I just can't. I am also in the midst of a spike right now, caused by some road traffic noise. My front door is 20-30m from a road. I like to avoid exposure here and so run to the car/run the dog past the road to quieter wooded area, but today, I felt my earplugs 'pop' maybe due to wax behind the ear, and I'm now terrified it wasn't in correctly and I've caused lasting damage - this worry and spike is despite me having earmuffs ontop of the plugs.
...I also spend ages pushing the plugs into my ears; if they crack or make a sound or pop, I repeat the process until they do not do this when i take my hand away. Embarrassingly, yet truthfully, it has sometimes taken my 20 mins to leave the house satisfied that they are in ok. If they 'pop' when 5m from the front door, I am back in the house repeating the 'process'.

It is important to mention that these things did not happen to me at once. They were incremental, but they are at the point now where I do not recognise the person I was before they happened. I have almost become used to this life. Trying to do something different or outside of my limited comfort zone, puts me into a panic attack and weeks of protracted stress and rumination. The double protecting within the house started when I was caring for a sick family member, who has since died. I didn't want any spikes ontop of that stress...but since I started doing it, it has now become habit...

Would I like things to be different - obviously yes!
Would I rather live like this than have the tinnitus get worse - sadly also yes, which is why I continue to do it...probably

So please use your common sense and don't overdo it.

 

[Kells]

@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.

Thank you Candy, I really appreciate it. You are so right about monitoring it and focusing on it. It's all I do because it's such a new phenomena to my ears/head. It's the first thing I search out when I wake up... which ear is louder today and how loud is loud. I am obsessing over it and I know in my heart and head that is the worst thing I can do.

It's so strange how TMJ is overlooked and while I am not kidding myself into believing it could be that simple, just to have it dismissed so easily was like a slap in the face.

I do have good days and bad days. Yesterday was so good. I was able to even watch a bit of tv without having it react too badly but now today it's ringing loud... or loud to me. Of course I'm fixated on it. Yesterday I was able to keep busy at home... today I'm in my quiet office at work. I should be working but all I hear are the high squeal of the cricket field in my head.

Thanks again for your kind words. xx

 

[Kells]

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.

At this point I feel if I don't look for answers I will never know how to deal with this. I feel if I at least knew the underlying cause I could work better towards minimizing it. Guess with this condition that isn't the case. That is the greatest shame for sufferers. It makes no sense on how one day the ringing is lessened than other days. I can't wrap my head around that. I think that has to be one of the hardest parts for a newbie.

I will search, thank you.

 

[Kells]

It is impossible to avoid setbacks and spikes. But you definitely can do what you can to minimize the chance that you get exposed to one of those loud noises, and that should be enough (everyone who got better has had experiences of being exposed to noises and it interfering with their healing, so don't get too upset when you get exposed to noises and get a spike). Also please keep in mind that trying to protect one's ears can itself get debilitating.

So please use your common sense and don't overdo it.

That is good advice. I also read somewhere here that if you overprotect to the point of obsession you have less chance of accepting and at least habituating to it. Common sense is definitely the best. Thank you.

 

[Kells]

So sorry you are going through this. Regarding your high blood pressure medication have you noticed if the pharmacy changed manufacturers? Especially if it is generic. There was a special on blood pressure medication my husband takes and it was stated that one should immediately go check the medication out with his/her doctor because that particular medication (from India) had several reported issue cases.

Good idea. I have a call into my kidney/hypertension specialist to see about changing meds or at least looking at mine. I don't think they were even working as good before this because my blood pressure was running higher. I will see what he has to say. Mine is on the list of bad ones to take but I think every medication under the sun is so that in itself is very overwhelming.

 

[Candy]

@Kells I wore white noise generators in the beginning - there was no way I was going to listen to that sound in the office... I had them on very low.

 

[Kells]

@Kells I wore white noise generators in the beginning - there was no way I was going to listen to that sound in the office... I had them on very low.

Unfortunately right now my tinnitus is made worse by white noise because of the pitch. I found one YouTube video that hides it enough where I can concentrate a but but I don't know if it's making it worse.

 

[Kells]

I want to thank every single person who responded to my current nightmare. I am praying for every single person here but I think I need to stop coming. I couldn't help see the posts from those who want to die and commit suicide and it's sending my anxiety about this into overdrive. I just want to cry and feel more like my life is over. I'll never get better with that mindset because I did have those dark thoughts after just a week.

Love to you all. xx

 

[Starthrower]

@Kells try not to be so scared reading many of our thoughts and experiences. I know at first years ago I felt like you did. It was scary. Everyone's situation is so different. I was thrown onto this tinnitus planet with no prior knowledge.

I also felt my life was over. But it just takes some time to adjust to this noise in the head. And you are taking all the right steps. Don't loose yourself.

Focus on the most important aspects for you and those you connect with.

Good idea. I have a call into my kidney/hypertension specialist to see about changing meds or at least looking at mine. I don't think they were even working as good before this because my blood pressure was running higher. I will see what he has to say.

Do a little research on the medications you are taking. I would find exactly where they were manufactured usually in a country like Vietnam or India. Sometimes these places change aspects of medications. And sometimes the pharmacy changes manufacturers without you knowing. I always check that out before leaving the pharmacy.

Hug to you.

 

[Candy]

@Kells. I will try to do the same, after this wobble, I need to pull myself back together for the kids sake. Wishing you all the best, thank you for your prayers.

 

[PortalNaut]

@Kells I sure hope you see some diminution of your T. As to the prednesone...you were give a pretty low dose. I was given 60mg. Maybe your low dosage was given because the ENT didn't think there was true damage. And just to pass along about that 'window' , my ENT said prednesone for acoustic trauma was effective (the sooner the better) but within the first 30days.

Glad you had some 'good' days already! Good luck.