Woke Up with Tinnitus — On Top of My Existing Pulsatile Tinnitus

[Steph1710]

Hi fellow tinnitus sufferers!

I need some support/help/just someone to listen.

I woke up with tinnitus four days ago and already knowing lots about the 'incurable' problem, I'm now feeling pretty down and lost. I've had pulsatile tinnitus for two years now and I'm receiving treatment very soon for it. The constant pounding sound in my ear used to drive me insane but I learned to tolerate it knowing it wouldn't be forever.

BUT now I've developed proper tinnitus and knowing I can't ever cure this kind has left me emotionally crippled - especially as I'm someone who thrives in silence. I could never stand external sounds and now I'm stuck with internal sounds I have no control over. I'm ignoring it during the day. Using sound apps whenever silence might occur i.e. evening/night times.

I'm trying to be positive but I've had so many health issues these past few years, that now developing tinnitus has left me wanting to die.

For your information I don't drink/smoke/do drugs/never been to a concert or went clubbing. I'm an outdoors girl who spends her life exercising. I've been delt a really shit hand it seems.

 

[Anders B]

Hi Steph,

I can so much relate to what you have to handle right now - went through the same 15 years ago. Without going to any details - my life with tinnitus have probably been better than without. I have a constant high pitched tone, that I have made my friend, no matter how counter-intuitive it seemed. At first it will be a struggle, you of course feel as you describe, but trust me, in a few weeks everything looks much brighter. The constant aim to achieve a level of health so good that the tinnitus disappears have kept my spirits up - and still does. I still believe, with the help of science (and Tinnitus Talk) that a cure will emerge. Until then - keep up the good work you are already doing. And if you haven't already - may I suggest that you have your levels of heavy metals tested - it is my belief that elevated levels of these play an important role in the onset. When your tinnitus is so new, chances of a cure with the right interventions are much better than if you wait. Take care - warm thoughts from Denmark

 

[Charburchar]

Hey Steph, I'm really sorry you're going through this. This forum is a great place to share your thoughts. I hope it helps you, as it does me.

Tinnitus can take time to heal or habituate to. In a few months or a year, for example, you may feel completely different to how you do now.

Like you, I also thrive in silence. I spend lots of time reading and writing. But I try not to let my tinnitus get the better of me. I take each day as it comes, good or bad.

Just remember that you're not alone in this. I wish you all the best.

 

[Steph1710]

Hi Anders B and Charburchar,

Thank you so much for your encouraging messages. I honestly think speaking and reaching out to people in the same situation helps so much in the early stages of developing tinnitus. It's taken me four days to do so, but in the end I had to find other people who understand/can sympathise what I'm going through. I know my family is trying but it's hard hard for them because they can't hear/feel what I do whereas you guys can. I'm trying to develop a good relationship with it already because if it's here to stay, then I don't want to hate it and I don't want it to define me. It may or may not go - who knows? I am contacting my ENT specialist today and seeing if they can suggest anything but I'm not holding out hope. From reading other people's comments, I guess it time I will habituate to the sound. I'm careful with my ears so I will continue to be so.

Unfortunately all this has come at the most inconvenient time as I'm now in the last two months of my degree; and I'm desperately trying to finish off my dissertation, extra essays and revise for my final exams... Ah! Why did it have to happen now! So much for peaceful studying with an alarm going off in my head.

Unlike some, I've been lucky enough to have been able to sleep really well every night since it came on. In fact my sleep has been better - maybe because I've developed a touch of depression or perhaps because I've been listening to green noise on my phone which is the sound frequencies found in nature. And I do LOVE the outdoors!

Well at least this has happened in my 30 year of life rather than in my 20s I suppose. If you guys have any other ways or dealing with it, then please let me know and thank you, thank you, thank you again for responding to my post. You have both given me more help than you'll probably ever realise.

Love to both X

 

[Steph1710]

Well it's clear from the amount of mistakes in my last message, that I wrote it still in bed without my glasses on! I do apologise.

 

[hans799]

The best thing you can do to cope is building general health. All the usual stuff: a good diet, lots of exercise, vitamins/minerals, and so on. Since there isn't a targeted cure yet, you need to manage the consequences of tinnitus, and keeping your entire self as healthy and robust as possible is the best way to do it.

Also realize that as far as tinnitus sufferers go, you have it very mild: being able to mask it through the day and being able to sleep well at night. Please do everything in your power to keep it this way. Avoid loud noise and be very mindful about ototoxic meds. Everyone who has the same level of tinnitus as you do whom I know in person or have seen on this forum has gotten used to it in a few months and lives a good life. The same thing will happen to you, as long as you don't screw up and make the noise worse.

Finally, while tinnitus really is incurable at the present, there's a long list of very promising, well-recognized and well-funded treatments in the pipeline. On the device side, we have the bimodal stimulation devices: Lenire (out now), Susan Shore's device (out in 1-2 years), and the Minnesota device (out in a few more years). On the drug side, we have FX-322, the Hough Ear Institute pill, and several others I haven't gotten around to memorizing. The bimodal devices promise relief; the drugs promise the real deal, regeneration of the inner ear.

You should be able to cope for 1-2 years, considering that you're a mild case. In that timeframe there'll be bimodal devices available which can give you relief. And using that relief you should be able to make it for 3-4 years more at which point a real cure should be available.

 

[Charburchar]

Unfortunately all this has come at the most inconvenient time as I'm now in the last two months of my degree; and I'm desperately trying to finish off my dissertation, extra essays and revise for my final exams... Ah! Why did it have to happen now! So much for peaceful studying with an alarm going off in my head.

Im also in the last few months of my degree! Has you're university not given you any leeway with deadlines? My university has a covid-19 policy where we are able to apply to extenuating circumstances without the need for evidence, and exams have been changed to online assessments. It might be worth looking into getting an extension.

Well at least this has happened in my 30 year of life rather than in my 20s I suppose. If you guys have any other ways or dealing with it, then please let me know and thank you, thank you, thank you again for responding to my post. You have both given me more help than you'll probably ever realise.

Love to both X

More than happy to help in whatever way possible, I understand how distressing this experience is. As for other ways to help deal with it, I find exercising every day helpful. I continue to read as much as possible. I watch tv shows at night to mask the sound, but as you say you're green noise seems to do the trick for that. I've also ordered supplements which some people find helpful (though bear in mind there's no scientific evidence that they actually work) - magnesium, ginkgo, B12, and tumeric. But I think the thing that helps me most is honestly just speaking about it. It certainly has a cathartic effect, for me anyway.

 

[Steph1710]

Thank you so much for the advise Charburchar.

As far as uni goes, I'm fairly lucky as I already have extra time granted due to all my other health issues that are going on. Nice to hear you're in your last year too. What are you studying? I'm studying architectural history and actually had a work placement lined up to go straight into after I'd finished but given all this COVID-19 business, it's not going to be for a while now.

I've decided from today, I will take up meditation and see if that works. I've also just ordered some supplements though as you mentioned, there's no proven evidence that these work. (can't hurt to try though)

I already exercise everyday but haven't the past few days since I developed T. I'm worried it might exuberate the symptoms. Do you have any troubles exercising with T?

Thank you again for listening to me. I really needed it. <3

 

[Steph1710]

Thank you Hans799.

I exercise everyday - run/swim/cycle or walk/climb/skating. I'm already a most active person. I also eat very well and don't drink/smoke/take drugs, as I first stated.

And although I should be lucky that right now my tinnitus isn't as bad as some - I still don't feel great about it. I have two different sounds. One like a siren and another high pitch squeal. Sounds are quite painful too, though I've always found them painful.

Thank you so much for your response to my post though. It's comforting knowing there's others out there who have this.

I'm vert protective of my ears and have never like loud sounds. I enjoy the peace and quiet of nature (well not anymore haha - cruel world).

Medication was most likely the cause of my tinnitus. I know all about ototoxic medicines now. Unfortunately it's too late to reverse that damage. I was put on antibiotics for six months and that was probably the trigger. Unfortunately I'm also a migraine sufferer so not taking ototoxic drugs isn't going to happen.

 

[Charburchar]

Thank you so much for the advise Charburchar.

You're more than welcome!

As far as uni goes, I'm fairly lucky as I already have extra time granted due to all my other health issues that are going on. Nice to hear you're in your last year too. What are you studying? I'm studying architectural history and actually had a work placement lined up to go straight into after I'd finished but given all this COVID-19 business, it's not going to be for a while now.

Oh okay, I understand. I study sociology and politics at Goldsmiths, part of University of London. Architectural history sounds fascinating. I'm sorry to hear about the work placement. Will you have to wait until next year?

I've decided from today, I will take up meditation and see if that works. I've also just ordered some supplements though as you mentioned, there's no proven evidence that these work. (can't hurt to try though)

That's a good idea. I've read meditation works well for some people on here, I hope it works for you. And indeed, it can't hurt to try. With a little luck they'll help us out.

I already exercise everyday but haven't the past few days since I developed T. I'm worried it might exuberate the symptoms. Do you have any troubles exercising with T?

Exercising has not caused any problems with my tinnitus, no. However I have swapped jogging for walking, only because I have recently developed hyperacusis and I'm experimenting to see if jogging makes it worse. I still do home exercises, just not intense. Exercising really helps with my mental health, particularly right now during the lockdown. I would recommend doing very light exercises maybe, and keep a record to see how it affects your tinnitus. See what works for you.

 

[Zinkster]

I don't have tinnitus but I did have pulsatile tinnitus. I acquired it back in January after a bout with the flu. About a week after recovering from the flu, I got a nasty headache that lasted for around four days. It wasn't a migraine but it was still pretty bad. Bad enough to be laid up and incapacitated.

Toward the end of the headache I started to get a the whooshing sound in my left ear. The flu, a nasty marathon headache, and now this? Anyway, things could be worse. I had been sleeping on a couch much of the time--actually almost the whole time I as sick. I didn't want my wife to get sick. I also probably laid on the same couch for many hours during many evenings over the years.

It turns out, the whooshing most probably was a result of the position of my head on the couch and my position during sleep in bed or on that couch. I believe I developed occipital neuralgia. I felt a major part of the pain was in the left back of the neck and head. My wife swears by those little U-shaped travel pillows and wears one to sleep. I always thought they were way too uncomfortable, but in this case, I would try anything and after a couple of months the whooshing has disappeared. For me, a travel pillow did the trick.

 

[Steph1710]

@Zinkster that's amazing! So glad the pillow worked for you. Unfortunately for me, my pulsatile tinnitus is caused by two things - the first a blockage in the main artery in my neck which means the blood isn't flowing around my brain properly, so the sound of my pulse is the blood trying to trickle back down - the second issue is raise pressure in my head meaning too much spinal fluid has flooded my brain! Yay!

Luckily this is all in the pipeline to be corrected and was supposed to be done at the end of March but the country went in lock down and I wasn't allowed out because I'm a high risk patient, meaning if I catch COVID-19 I could probably die. But that's not to do with all of the problems above. It's down to the severe asthma I developed last year.

Getting back to the pulsatile tinnitus: I had loads of tests done - CTv scan, MRI, MRA, audiology etc. and they all showed I had this problem I mentioned. So I'm having a lumbar puncture to drain the spinal fluid and hopefully lower the pressure in my head (I'm hoping it stops these migraines) and then I'm having a stent in my neck to open the artery back up to get the blood flowing again.

So yeah, to suddenly develop normal tinnitus on top of all of those problems already, has really upset me.

X

 

[Anders B]

Hi Steph,

thanks for sharing your story. There are no certainties of course, but with the overall picture you describe, it seems very unlikely that you do not have one or several misalignments in your spinal column. There are some controversies reg. a few of the treatment options for this, but if you are interested I can provide you with a direction on the steps to take from here. Take care, Anders

 

[LilSass]

Hi Steph,

I'm new to the forum, though I have been lurking for a bit! I feel that my tinnitus has also been caused by ototoxic drugs, specifically my acute migraine medicine (almotriptan) in combination with ibuprofen. If you want to read my introduction it goes into more detail. It's been about six months and I think I've mostly exhausted my internet search in terms of finding any kind of solution, other than finding ways to deal with it. Mine is a bit strange in that it is one day one, one day off (sometimes I get two days off!). However, it has left me psychologically messed up, because one day I feel somewhat normal and then I feel like WTF is wrong with my ear? I've had some thoughts that I never really had before, along with some anxiety, which also has never been an issue. I used to wake up at 6am and do yoga, pack lunches for the work day (just me and my hubby) and go off to work, which I really enjoyed. Now, life just feels weird (on top of COVID) and I sleep in dreaming of what my life used to feel like. Anyway, I just wanted to connect with you and see how you are coping. I never though life could be this way - still getting used to this new reality...

 

[Steph1710]

Hi Steph,

I'm new to the forum, though I have been lurking for a bit! I feel that my tinnitus has also been caused by ototoxic drugs, specifically my acute migraine medicine

@LilSass

How have I never seen this message! I'm so sorry.

How are you doing anyway?

Xx

 

[twa]

Hi fellow tinnitus sufferers!

I need some support/help/just someone to listen.

I woke up with tinnitus four days ago and already knowing lots about the 'incurable' problem, I'm now feeling pretty down and lost. I've had pulsatile tinnitus for two years now and I'm receiving treatment very soon for it. The constant pounding sound in my ear used to drive me insane but I learned to tolerate it knowing it wouldn't be forever.

BUT now I've developed proper tinnitus and knowing I can't ever cure this kind has left me emotionally crippled - especially as I'm someone who thrives in silence. I could never stand external sounds and now I'm stuck with internal sounds I have no control over. I'm ignoring it during the day. Using sound apps whenever silence might occur i.e. evening/night times.

I'm trying to be positive but I've had so many health issues these past few years, that now developing tinnitus has left me wanting to die.

For your information I don't drink/smoke/do drugs/never been to a concert or went clubbing. I'm an outdoors girl who spends her life exercising. I've been delt a really shit hand it seems.

I just read your story. I'm so sorry. This is tough what we are going through. Hope your holidays were good. Let me know how you are doing.

Teresa

 

[Steph1710]

I just read your story. I'm so sorry. This is tough what we are going through. Hope your holidays were good. Let me know how you are doing.

Hey lovely lady!

The original post was back in April last year. I was a complete mess. I felt like everything good in my life had been taken away from me.

However, after reassurance, support, and love that I was shown on here by complete strangers, I knew I would eventually be okay.

How I feel now is a world apart from back then. I still have ups and downs but never any dark thoughts about tinnitus now. If anything I'm hopeful these days. I've had to make friends with the enemy... I still hate Mr T, but he told me he isn't going for a while... The annoying bast*rd!

Anyway, just to let you know, that I would comment on your profile posts, but for some reason it won't let me As for the horn going off next to you yesterday, how do you feel today? Any new tones? Any sensitivity at all? Give it a few days and see. If you're okay by the end of today, I'm sure you'll be fine.

Much love as always.

Steph <3

 

[unknownpleasures]

Hi fellow tinnitus sufferers!

BUT now I've developed proper tinnitus and knowing I can't ever cure this kind has left me emotionally crippled - especially as I'm someone who thrives in silence.

I just popped on as not been on for a while and read this and have to say it was exactly the same for me. I was always most happy when in quiet surroundings, being robbed of that was incomprehensible.

Luckily my tinnitus has calmed down to a level that I can now cope with / is pretty much gone except when stressed has been a blessing.

How is your tinnitus now?