Mystery Tinnitus

I really wish I knew what the hell makes my tinnitus go from really loud to really quiet.

 

Maybe relaxation and being calm and laid back...it's a mistary for sure.....lots of love glynis

 

Relaxation and deep REM sleep for me are two of the most important things. Being happy or distracted and not thinking about tinnitus are also hugely instrumental.

 

Same here. Someone better solve this puzzle soon!

 

Cycling tinnitus. It started happening to me about 8 months in. Several loud days, followed by a moderate or mild day.

I was doing some research and saw a phrase about "limbic cycling" in relation to tinnitus. Unfortunately I didn't bookmark the site, and I haven't been able to verify exactly what that means. I'm guessing it means our limbic system has phases, and sometimes it's in a hyper phase and the tinnitus gets loud, and other times it's in a resting phase and then the tinnitus gets mild. The human body has different rhythms and cycles for other functions, so it's possible, I suppose.

I've always wondered if it's something that can be discerned through blood tests. Like, take a significant number of people with cycling tinnitus and draw a blood panel every day for 10 days, noting tinnitus volume and intrusiveness. Do the same with people who have constant mild tinnitus, loud tinnitus, and no tinnitus. We would all look like ghosts after 10 days of this, but maybe something would be revealed when the blood panels are compared. I'm not a blood technician and don't know what they would be looking for, but cortisol levels for sure, insulin levels, that sort of thing.

 

@Cheza Thats very informative and would be a good study in my opinion. @glynis yes it is very strange indeed....how are you coping with your loss which i'm so sorry to hear. (((

 

There's definitely something going on because mine is random. I never know what I'm going to wake up to but it's always within a certain range.

 

Hi @Dubbyaman,
I'm doing ok and the family with outbreaks of tears.

He was a lovely dad and going to miss him so much.
Got a tough week ahead .
Going chapel of rest Wednesday and funeral Thursday and been so nice having support from the forum at this sad time in my life.....lots of love glynis

 

So sorry to hear of your loss Glynis x

 

I'm waiting for a quiet day, everyone talks about them. Just one day to give me some hope, I would think it has to happen at some point. I wake up and feel it is lower but is raging by the time I am fully awake (5 min) and gets louder after using my ears. After about 6-8 hours of moderate or even very low exterior noise it's so out of control I can't do it anymore and become completely non functional, I go and lay in the dark and quiet, zone out or pass out, way too much time laying in bed. It's over two years and not a single good day, it just doesn't change for me. just one day where I can function normally, get a few things done, enjoy myself and I would be happy and feel like this life is half way acceptable. Maybe tomorrow it will happen.

 

@Dubbyaman . Hi can't understand way this happens. What I do know is if I have a quiet day it's payback next day loud as ever.

 

I feel your pain, I really do.
I can't say if this will help or not but my new audiologist told me he had T.
He had it for 2 full years and everyday hid away after work in his room to keep quiet. Then realised this was no way to go.
He began, in his words living again, joining in with family etc. He also started doing what I understand is mindfulness, every day, spending a few minutes doing the body scan and constantly checking his shoulders for tension.
After 6 months it was quieter, after a year he no longer heard it. He has been T free, or habituated, who knows for many years now.
He inspired me to try as I have never before met an audiologist who had T.
I've been doing it 3 months, with other dietary changes. My T is changing, going down, or I'm habituating, who knows. I'm optimistic that this will work.

 

Can you share your dietary changes? I've been reading about some tinnitus being made worse by insulin resistance, and that a hypoglycemic diet (low carbs especially) can help.

@Telis has catastrophic level tinnitus, mostly brought on by ototoxic meds. Maybe you could ask your audiologist if there's anything that can be done about that level of tinnitus. Several members here are dealing with the same thing, and have been for years.

 

I decided last year to hit my T and H from all sides.
I believed my T was drug induced, one consequence I felt it left me low on magnesium so began using a mag spray.
I started facing noise in the car and shops everyday.
I read EBV could be a cause so went down that avenue too, introducing cleansing foods celery, cucumber, blue berries, lots of all fruit and veg. A vegan diet was recommended but I do not want that.
I introduced b12, coq10, zinc, I use a probiotic daily, b2 other were recommended but as I was unsure I did not try all supplements.
In January I saw the new audiologist and also followed his instructions.
In September last year I could not bear my own voice and was hiding at home a complete wreck. I increased my ADs slightly too.
Now I can talk, laugh, watch tv (not without trials ) but louder than 6 months ago.
I have made 2 hour car journeys, not easily but doable ( I have reactive T). My T has gone from 10/10 both sides, sleeplessness utter distress.
Now it is mostly one side as before the drug fiasco, one day 5/10 the next 1/10, it cycles daily.
I have a long way to go to be content.
I will ask the audiologist when I get my appointment which should be April.
Oh and I nearly forgot I have recently noticed I get a spike when I need food, whereas I used to get weakness. But the drug issue caused catastrophic low blood sugars.

 

Thank you, I do push it very hard, maybe too hard. I push the noise levels, I push my body, every day extremely hard workouts, I do socialize at times, always get people laughing, but inside I'm dying and feel like I haven't slept in months (although I do sleep ok). I am strong and have always been able to push myself mentally and physically harder than most people can imagine, I have achieved at 40 more than most people will in their life time but this ear/brain thing holds me down these days. Daily I have about 6-8 hours and my body taps out, I don't mean I'm tired and feeling sorry for myself with bad thoughts or something, I mean I'm done, like I've taken the beating of my life and it's over.

 

@Telis how did u get t?

 

And now my mistery Tinnitus is acing up! I'm having a spike right now and I don't know what caused it? I don't know if I can make it to the end.

 

@Telis

Do you still work? I found when my T got louder that I became extremely depressed, desperate and anxious. I didn't leave my room for a week because all I could think about was killing myself. I had to literally drag myself out of bed, almost like an out of body experience, to go and teach my students. It was unbelievably difficult because I felt irritable and struggled to concentrate with the horrific noise in my head; but I had to try with every ounce of strength I had because it's my livelihood and I've got a mortgage to pay.

If I had my way I'd have never left my room until one day @billie48 wrote me a message that helped me out of a hole. I found the more I forced myself out of my room the better I felt, even though I was still depressed (but not as suicidal) because the noise was still there. I figured I may as well go out and teach than stay in bed like I was doing previously. In essence I'd rather suffer whilst working then at home on my own. It definitely helped me and it helps to get out of your own headspace for a bit.

Now I just try and keep busy, but I still get that feeling of wanting to lie in bed all the time. I just fight through it and have experienced some pretty good times last year. I suppose as good as it gets for now. I'm still reserved though and felt I needed to quit my band this year, a decision that ripped my heart out, as my soul is in live music. I'm giving myself a year to assess my situation and generally just try and relax as much as possible, but I have every hope I'll be going back to it again next year. I'm also getting married this year and have reservations about the stag do (bachelors party), the wedding itself and the honeymoon. All these things will almost certainly have loud elements to them. For one we've booked a helicopter flight that's going to be loud; I'll be wearing ear muffs but it still kind of depresses me that I can't feel like a normal person whilst on it. The long haul flight is another concern but at the end of the day I have to live. I just cannot and refuse to stop doing all these things that make a life complete.

I don't want to look back on my life when I'm older and realise that tinnitus took everything from me.

 

I jump from a barely noticeable tinnitus to catastrophic levels in few hours. I took tegretol and clonazepam for many yars for trigeminal nevralgia that in my opinion have triggered the tinnitus and made it worse. I agree with @Cheza about the REM sleep. Those drugs alter the rem sleep and i always wake up with a feeling of restless sleep. Now i'm in a closed way. Tegretol loss efficacy and even clonazepam. I'm tapering off from 1200mg tegr nad increasing clonazepam from 2 up to 4 to survive. Sometimes the cure are worst of illness.

 

I understand what you are saying. I had T that was stable, only responded to very loud restaurants or shopping centres. 90% of the time I never heard it.
The drug fiasco of last year changed all that, the T I got was different, very reactive, stress being a massive trigger, any tiny mental request made it worse. Ask me my name and it could rise. I fought and fought and literally yelled at it ( bad idea) but I lost.
I am strong, loud( well I was) confident, hard working, a mother, grandmother, run a business, but this trauma, this noise, this physical thing has brought me to my knees. I am fighting still, I have to feel I am doing something but I have learnt it all has to be calm and controlled. This drug induced T is not the same beast as noise induced T, no way. It is a physical entity, many days I am as you say exhausted, wiped out. If I have to face a barrage of noise, 3 grandsons 7, 4 and 1, I simply cannot cope mentally, my brain feels fried, I simply have to hide away and cry. My T is quieter every morning but by night it screams, go to bed basically. I feel like I start a day with so many noise points, somedays hardly any, but different noise challenges use them up and I'm done. I plan a day around what noise will be faced and can see how many points will be used.
My aim would be to start each day with more points and to not get the screaming witch telling me to sleep later in the day.

 

No I don't work, I've lost my career which was kind of my life. I'm financially free but this doesn't make it easier, I want to be productive and sitting around kills me. I have H, ear pain, and dizziness along with my T, like I say, I can not function at all at times. I spent over a year in bed trying to sleep on and off to shorten the days, I'm up for full or close to full days now and adapting somewhat to the suffering. I push myself very hard, believe me.

I find trying to listen through the tinnitus noise and the H to be exhausting. The more I expose myself to, the more I'm punished, I get to a point where enough is enough and I just shut down, and not by choice.

 

I feel your pain, all of yours.
I got my tinnitus after a few stressful events in my life just over 7 yrs ago. I don't get the panic attacks like I use to but I still have days it drives me crazy.
Mine is very re active. Driving in a car for more then 10-15 minutes flares it up, certain noises, strenuous activity, food any food gets it flared up, sex, going to church and listening to the singing, drinking, smoking, Xanax, Valium, any sleeping med and I'm paying for it the next day with a extra high pitch, arguing with my kids, girlfriend or boss, anyways mine is so re active. I have good days where it's barely audible unless in a quite room, then I have days (like today) where I can here it no matter what I'm doing. The only thing that keeps me from jumping off a cliff is my love for my kids and telling myself a good day is coming.
I don't know if I'll ever get use to it, since some days are so much louder then others.
I wear ear buds at night to mask it probably 4 or 5 days a week sometimes more. I wake every hour and check how loud it is, worrying the next day will be loud. Mine is loudest in the middle of the night.
I always wonder are my quite days caused by something I do, and why can't my brain just filter this noise out cause some days it barley there, others it's mild and don't bother me much, others days even a mild day give me tons of anxiety.
I just pray one day there will be a cure or even a legitimate treatment. I just wish there was something I could do to slowly get better cause I'd do anything to feel as if I had some control over it.

Ok sorry, rant over. Back to alternating crickets with rain noises.

 

Yeah I don't even know what noise induced tinnitus is like, no clue. I never had any issues with loud noise, always had amazing hearing and healthy ears, only after a cocktail of ototoxic drugs did I have major problems.

Yeah brain feeling fried is a pretty good description.

Sorry to hear that things got worse for you, I hope they get better.

 

Yup, today it's back to being a high pitched loud piece of garbage.

 

@Dubbyaman . Yep same here as loud as it can be . But what can I do just have to hang in there like I have for the last three years.