Please Help. A Huge Setback.

[AuntSally]

I've had one sided pulsatile tinnitus for just six months now. After a horrible start I was just making some baby steps toward acceptance. Less anxiety a bit better sleep. I began to think I could cope with my soft pulsating in one ear.

And now I seem to have developed pulsatile tinnitus in the other ear, and a bit sharper and louder. A double pulsatile hiss 24/7 and it feels like my head is throbbing with it. I can't think of anything I did to cause it. I don't understand what is happening to me. I've gone from a normal happy life to a miserable wreck. A shell of the person I was just a few months ago. I didn't get any sleep at all last night and feel sick with worry. I am distraught and at a loss.

Has anyone here got pulsatile tinnitus in both ears and copes?

I am seeing ENT again in two weeks. Meantime I don't even know how I'm going to get through till then. Even then I'm not hopeful of any immediate answers.

 

[volsung37]

Tinnitus is like that Aunt Sally. Unfortunately just as you're getting used to one set of noises another set will start. You just have to go through the same process again and again. It becomes a little easier as you go along as you've kinda been there before and there's not the same level of panic each time. Sucks though.

 

[glynis]

I know you don't want to take meds but a low dose antidepressant for sleep is better than sleeping pills long term.
Will help you sleep and treat anxiety and can be upped to help your mood .
The meds can help.
I know people with pulsitile tinnitus who take a small beta blocker that helps and hearing aids.

I would see your doctor about Nortryptaline,amitryptaline or mirtrazepin as all can help with sleep,anxiety and depression.

They might only be needed for a few months and can not be as bad as how you are feeling.....I think worth a try...
Nortryptaline is the cousin of Amitryptaline and Nortryptaline easy tolerated and less side effects.....
I take 50mg and sleeping well now....lots of love glynis

 

[Karen]

Aunt Sally, I'm so sorry you've ended up with pulsatile tinnitus in the other ear, too. I have it in only one ear, along with hissing tinnitus, and that has been challenging enough. Having it in both ears must be very difficult indeed.

I agree with Glynis that a low-dose anti-depressant could be really helpful to you right now. Getting enough sleep is most important when you're going through these difficulties, and I think it would help calm things down. You may only need it for a few months, until you begin feeling more normal again.

A question: Do you monitor your blood pressure regularly, and could it have anything to do with a change in your blood pressure or pulse? I'm glad you will be seeing your ENT again soon, and hope he can provide some assistance to you.

Hugs and best wishes,
Karen

 

[AuntSally]

Thanks @glynis and @Karen I have wondered about blood pressure. I do get it checked and it seems mostly normal but it might have been elevated at some point a few months ago. I also think I might have intercranial hypertension. The symptoms seem to fit. And I seem to have developed a horrible bloodshot eye that isn`t going away.

This is a real low point in my life. I've found a lot of solace here but my T and symptoms do seem quite different from most. My next ENT appointment cant come soon enough. I'm going to ask to be referred to a neurologist.

 

[ryand]

@AuntSally , I'm so sorry. You will feel better. T is completely related to inflammation , caused by food (usually sugar or starch gluten rich the night before) , also how I sleep and quality of sleep (best on back). Lack of sleep makes you tense, worried, and muscles to tighten and flex (fight or flight) causing a tense cycle that could take days to get out of. Thats what happens to me.

Listening to sound fx, (NatureSpace App), words of affirmation to myself, and patience that I (you) will feel your happy normal again is the path we all need to head into.

 

[Karen]

@Aunt Sally,

If it is benign intracranial hypertension, your pulsating may be curable. And intracranial hypertension is supposed to affect the eyes, as well. I'll be interested to hear what your doctor has to say about your condition.

Please do update us after your doctor's visit. I wish you the best!!

Hugs,
Karen

 

[Fungus]

AuntSally....you WILL get through it, but it will take time.

I have PT in both ears (intermittently) and hissing tinnitus 24/7 and my life has returned to normal. Yours will, too.

TRY to be comforted by it rather than spooked by it. Blood is getting to your brain regularly....that's got to be a good thing. If your heartbeat is nice and regular....that's got to be a good thing. Nothing bad came of having PT yesterday ....that's got to be a good thing etc. It isn't easy at first, but becomes second nature in time.

As Karen, Glynis etc have said, if you are (and it is likely that you are) depressed, then treating the depression will help enormously with your coping strategies.You may need treatment with anti-depressants for quite a while as once the internal balance is shattered, it takes a while to regain your 'inner self/calm.' I initially was admitted to hospital with severe depression due to tinnitus and was on anti-depressants, sedatives (Valium) and hypnotics (zopiclone). I also tried all manner of supplements and avoided caffeine/alcohol/many medications etc. Now I'm taking nothing and drink coffee/wine/beer etc when I feel like it, with no ill effect at all.

It is good that you are getting your symptoms investigated, and hopefully a remediable cause for your PT etc. will be found. Please try not to diagnose yourself, however, as you will inevitably discover that whatever symptoms you have COULD be down to some horrible condition, but that the likelihood is very low, and more mundane (and far less horrendous!) conditions are likely to be the underlying cause.

None of us would choose to have what we have, but you can (and will) find a way through it. There seem to be as many different ways to cope as there are causes for tinnitus.....sometimes it takes a while to find our own.

Good Luck and Best Wishes,

Fungus.

 

[AuntSally]

Thanks @Fungus . I read your story and know what you went through. I take heart that treatment worked well for you and you're ok now. Thanks a lot for being here. If you don't mind me asking, how long did you need medication for and how was it to discontinue it?

I might be depressed. I'm not sure. I do have anxiety and horrible insomnia though. Before all this started I had no history of any mental health problems either and slept fine. Just a lot of inflammatory health problems that could be debilitating at times. I had no idea tinnitus could affect you like this. I did try an antidepressant for a few weeks but didn't like the side effects. Particularly I was more than spooked by an electrical static noise in my head that hadn't been there beforehand. So I quit. After that I began to settle a bit. The edge was off the anxiety and I was managing a total of 4 to 6 hours sleep most nights. I was beginning to cope with my one sided pulsating T, making an effort to resume much of my normal life, and sometimes I tentatively thought things might be improving..... slightly.

That was until my left (previously) good ear joined in, and a bit louder and harsher than the right. It was just intermittent at first but is now constant. Cue crash and burn.

My problem is that I never know what is going to happen next. My T is all over the place. The fear this causes is indescribable.

Part of me would like the psychological relief medication might bring. But at 58 risk getting stuck on it for life. Yet more fear. Although like @glynis said I have cut a mirtazapine in half on occasion for sleep. I assume this is ok and better than sleep meds.

I read a lot about people coping and doing well despite loud unmaskable T of various kinds and I felt uplifted even though I think PT even harder. I know what I have to do, and that is acknowledge, accept and adapt. I learned that from @billie48 `s amazing story. I was moving through this before until this happened. I don't have the strength. I feel challenged beyond my ability. I can't bear the thought of having to live with this noise. I blame myself for it. It's making me nauseous.

 

[Jamclem]

I know it is really hard for you. But you will get through it. There are loads of possibilities of diagnosis and possible causes as well as solutions. Just stick in there.

 

[Fungus]

AuntSally......yes, you'll get there. Unfortunately it takes longer than we'd like, though.

I took anti-depressants for 15 months, stopping in March of this year (no relapse as yet!).Like you, no history of mental illness, and, in spite of some pretty awful life events, never any depression. Unfortunately mirtazipine caused me to have an anaphylactic reaction....but venlafaxine did the trick.

Depression and anxiety are really very common in the early stages of (chronic) tinnitus.The most plausible explanation that I have come across is that sudden (and particularly loud) noises alert the primitive 'flight or fight' response with outpouring of 'stress' hormones like adrenaline and nor-adrenaline (I'm using the British terminology here). These hormones speed up the heart rate, increase the blood pressure, increase alertness,cause a panicky feeling etc.This mechanism has evolved as sudden noises often mean 'DANGER'....gunshot, car tyres screeching, animal growling, tree breaking. With tinnitus, though, the noise triggers an inappropriate response.

Maybe the process which triggers tinnitus also triggers a change in the mental health...........?

AuntSally....you're a mere girl...I'm 63, and there's still life in the old bones yet.

I didn't have any difficulty stopping either the sedatives/hypnotics or anti-depressants at all, though it can be difficult for some. I tailed mine off ever so gradually when I felt the time was right.

Try to keep strong, but don't be afraid/ashamed to admit how this whole thing makes you feel and how you are having trouble coping. Help is out there and you are one of quite a large 'club'.