New to Tinnitus — Cause Migraines, Ibuprofen, Blood Pressure Meds, or Autoimmune Disease?

[AliasM]

I saw my GP today and she was surprised I still have tinnitus. (I only saw her last week. ) When I broke down in tears and explained just how much it and hyperacusis have made my life unrecognizable in 3 short months (not the first time I have tried to emphasise this but she is JUST NOT LISTENING)... she went on about how so many of her patients have a "bit of ringing in the ear" and they have not reacted like I have.

The "bit of ringing in the ear" comment had me explaining to her for the 500th time that it's not only the pitch, volume and intrusiveness that has brought me to my knees, but that the noises and sensations are all over my brain with 2 or 3 or 4 or 5 overlapping sounds at any one time.

She said "what do you mean brain". I told her I get high pitch electrical chirping in the occipital region, usually at night and through the night. Depending on the day I can have low Hz drone like solid tones that sit about 5cm above my ears, and/or glass shattering in the same place as well as behind the ear that I actually feel vibrate. I told her I also get single tones or static down the centre of my head. I explained that out of my ears I get hissing and high pitch kettle squealing but I only get sounds coming out of my actual ears half of the day. The rest and in fact most is noises from my brain that I often feel too. That is why I'm going mad. It changes throughout the day and each aide of my head is not necessarily symmetrical.

She told me that is not normal and I need an EEG. It is normal though isn't it? Is she just showing ignorance? Lots of people describe tinnitus and sensations in the brain, not the ears. Right now I have no tinnitus in my ears. If I block them they are silent superficially but I can hear my brain going off in the background. If I keep them blocked too long I start to hear new tones so try to keep it brief.

Has anyone ever been sent for an EEG as part of their medical investigation process? If so, is there anything I should be aware of that can spike tinnitus? I read a lot about MRI as part of the work up but not EEG.

Thanks.

 

[AliasM]

@AliasM, I'm certainly not a physician but I've spoken had many consults with some tinnitus experts and researchers: meds, they really only worry about NSAIDs at very high doses for very, very long periods of time. And even for diuretics they worry about people who have them high doses intravenously in terms of root causes of tinnitus.

That said, I noticed that you referenced a rheumatologist. Considering you are having some hearing loss, have they considered an autoimmune condition attacking your inner ears? I ask because I actually have unilateral hearing loss and they're wondering about that for me. I'm about to head to the doctor to have a bout a gallon of blood taken for me to move everything out. But I do not have any known autoimmune conditions currently.

Prayers for you.

Best,

Danielle.

Thanks Danielle, I am steering more toward tinnitus being caused by my severe headaches which I am still having. Midnight last night I was unable to move. Cause of headaches still unknown. I spoke to my rheumatologist the day before yesterday. He says no way is my tinnitus rheumatology related. I have a diagnosis of Psoriatic Arthritis but to be honest, I haven't had any symptoms in about a year. I was doing really well through 2020. I did have arthritic pain in my knee Christmas Day (first arthritic pain in months) and tinnitus established itself 24/7 on the 28th/29th December but maybe coincidence? Who knows.

Apparently autoimmune hearing loss is quite drastic. My hearing loss is very mild and actually considered in the normal range by one audiologist I spoke to and would not apparently contribute to tinnitus.

 

[Forever hopeful]

@AliasM, well certainly looking at your audiogram, your hearing is all within normal limits. I don't know how old you are but I'm 54 and according to my ENT, 25 dB is the lowest threshold for normal for someone my age. My hearing in my left ear is worse than yours.

It certainly sounds like it has some relationship to your migraines. I'm so sorry you're going through this. I hope your neurologist will be able to help you get some answers and possibly treat the tinnitus. If there's a known cause and it's treatable that would be great.

Sending healing thoughts your way!

Danielle

 

[AliasM]

Thank you. I am 42. They told me my hearing is fine but I could have suffered a noise trauma for all I know. I had an MRI around the same time the tinnitus started as well. I never had a hearing test before the tinnitus started. For all I know my hearing could have been amazing and it dropped to the levels I attached above. They wouldn't give me steroids though because 'normal for age hearing'.

 

[AliasM]

Thanks everyone.

I just saw the ENT, he was no use but kind. He suspects my tinnitus was cause is viral. I had a month long cough before tinnitus started. He doesn't actually know he said (and he said he shouldn't have said that out loud) but that is what stands out most to him from all the things I mentioned e.g. headaches, Ibuprofen, BP meds, autoimmune.

Forever Hopeful, I hope you are keeping well. I have a diagnosis of Psoriatic Arthritis but to be honest, I haven't had symptoms for months. I had a really bad flare after my son was born in 2018 that lasted a year. 2020 was actually a good year for me u til the last few months where I hurt myself at the gym and caught a bad cough... then of course my ears in December.

The ENT can't do anything for me but he did write me a referral to present to the emergency room now for urgent psychiatric review because I am suicidal.

 

[AliasM]

I did a stupid thing today, I let the ENT microsuction. I asked for manual cleaning. He said no. He said it would take too long and it would hurt. I knew it wouldn't hurt or take too long because I have had a manual cleaning before, a few years ago.

The ENT knew I had hyperacusis. I went into the appointment with ear plugs, I told him. He assured me it was really quiet and could not affect tinnitus. I reluctantly believed him. He did the left ear, it was extremely loud. I pulled away and he did not do the right ear.

Since then my left ear has been fluttering. It has not fluttered for quite a few weeks now. The ringing in it is also super loud right now. It is 2am currently. My anxiety is always through the roof but this isn't helping. I hope it did not cause me harm.

The procedure unknown to me, cost $240. Had I known that, there is no way I would have gone ahead either way. I figured it was part of the consult.

I am so stupid, and so angry with myself.

 

[Tweedly]

Hey @AliasM,

First of all, I am so so sorry for what you are going through right now! I want to let you know you are not the only one going through this not noise induced tinnitus. You are not alone...

My story sounds pretty similar to yours. I suffer from migraines most of my life. Recently I got heightened pressure in my head with it and sudden onset tinnitus.

I recognize what you are saying about the sizzling of your brain. This happened to me in the first two months. This eventually settled down into more "traditional" tinnitus.

I hope it will settle down for you too, or subside completely ofcourse!

In the meantime hang in there! If not for your own sake, then for the ones you love and who love you! Right now it must be so difficult to look at your life in any other way than suffering, because it feels like your very mind that prevents you from doing this.

However, that life that others are still living is still there, waiting. I am saying this to myself just as well as to you. Since I am also new to T...

 

[AliasM]

Thank you Tweedly. I have been having the pressure too. In my head, sides of nose, eyebrows and forehead. Sometimes with pain sometimes without. This only started around the same time tinnitus did. Sometimes it felt like my brain was sinking.

Due to the pressure I was investigated for raised intracranial pressure and CSF leak. I had a lumbar puncture and more but all clear. No answers as to what the pressure thing is. It has settled a bit compared to December and January but it still surfaces periodically. The tinnitus hasn't settled at all though. If anything my left ear, which was my better ear, is way worse. I was devastated when my MRI, MRA and CT brain came back normal. I wanted them to find something they could treat. The doctor's words "good news, your imaging is all clear" brought tears of devastation, not joy. I can't think of any other condition where I would wish for abnormal imaging results.

I hope you are ok. How are you coping mentally? This started December 2020 for you too, right?

 

[AliasM]

I'll start by saying I feel genuine trauma after the way I have been treated by doctors. I see their incompetence, backed up by lies and a pathological 'making it up as they go along' when they don't know. It has left my children and I with compromised health to say the least. I won't bore you with the details but between my kids and their issues (open heart surgeries, subsequent acquired brain injury, prematurity, chronic lung disease, and more) and myself, I could honestly write a book. I am left with very little respect for them or their profession, and I developed health anxiety a few years ago as a result.

Then came the medical neglect and trauma I suffered in the month before developing tinnitus - 12 emergency room visits, GP shopping and more just for some damn treatment which I never actually got. I was just told to go home and treat with Ibuprofen.

4 months after onset of migraines (and almost 3 months after onset of tinnitus), I finally got in to see a neurologist yesterday. He asked what migraine preventer I had been put on. Errrrrr, NONE lol. (Atypical migraines began after lifting a weight at the gym incorrectly late 2020).

So anyway, he wants me on 25 mg of Amitriptyline and 10 mg of Propranolol twice per day (with that dose increasing over the next few weeks to months) as a migraine preventer. I emphasised to him that the migraines are bad, but tinnitus is literally the worst thing I have ever experienced in my life and I am deeply concerned about ototoxic drugs making my tinnitus and hyperacusis even worse. Plus I am concerned for my hearing. He told me not to worry about it. He said anyone that thinks they got tinnitus from medication actually probably got it for the reason they were on the medication in the first place. He used Amitriptyline for that example.

WTF do I do? I am in such a state. Tinnitus has affected me so badly I am in fight and flight 24 hours per day. I do not know what to do. Do I trust that he knows what he is talking about and take these medications? He was just the hospital registrar not a consultant, but I believe his protocol was approved by the consultant before I left.

Would you take these drugs 3 months into catastrophic tinnitus & hyperacusis? I waited 5 months for some advice regarding these migraines which I highly suspect caused my onset of tinnitus and this is the treatment I have been given. Many people think they got their tinnitus from these very drugs.

P.S. I have told any doctor that will listen that my left ear (my good ear) is getting worse these last 3 weeks, and the tinnitus in that ear is escalating and it is always feeling full but no one cares. I expressed concern that if there is inflammation or something else going on, my ear issues could be progressively worsening but they have all brushed my concerns off. Even the audiologist did. I went for a repeat audiogram and he threw me out. He wouldn't do it.

Thank you.

 

[ajc]

Would you take these drugs 3 months into catastrophic tinnitus & hyperacusis? I waited 5 months for some advice regarding these migraines which I highly suspect caused my onset of tinnitus and this is the treatment I have been given. Many people think they got their tinnitus from these very drugs.

I would take them if you are anyway suicidal at the moment. What's to lose?

There's no drug in this world that hasn't made someone worse...

 

[AliasM]

Thanks for your reply.

I just want to reach out and thank every person that has responded to my posts and helped me. I can't thank you enough for taking the time to do so.

 

[Backpacker]

Atypical migraines began after lifting a weight at the gym incorrectly

Did you ever look into PLF yourself online and try herbal diuretic, sleeping with your head elevated, avoidance of any kind of bending over and straining etc?

I am assuming you are already avoiding salt and coffee.

When you describe your "atypical headache" as atypical, what is it exactly, is it more like pressure? And did it start right after your injury, you mean you did not have any headache before and the first time you had a headache was after the gym injury?

 

[Greg Sacramento]

MRIs are not the best test for headaches after all physical injuries. MRIs will show white matter caused by headaches with neuro input, but not always after a recent physical injury. Therefore the neck needs to be examined by other tests.

Sixty-Four-Section Multidetector CT Angiography of Carotid Arteries: A Systematic Analysis of Image Quality and Artifacts.

How cervical spine instability disrupts blood flow into the brain and causes many neurological problems – Caring Medical Florida

Headaches are discussed after physical injury. Also have articles on how TMD can cause headaches.
Also read the articles in blue on bottom on cervical spine instability and occipital nerves.

Interventional radiologists are needed over other doctors. The same with pulsatile tinnitus. I posted on how pulsatile tinnitus happens over age 40-50. It's just too complicated to discuss pulsatile tinnitus in those under age 40.

 

[AliasM]

I'm back, couldn't stay away. My entire life is consumed by tinnitus & hyperacusis.

It has now been 11 weeks 5 days weeks since 24/7 tinnitus. It started about a month earlier came came and went.

I saw the neuro 2 weeks ago. He told me to start 20mg day and night of Propranolol for migraine prevention. So scared to do so but I have to try something. Migraine is a misdiagnosis I firmly believe but something is causing headaches and pressure changes in my brain. My onset of tinnitus coincides with the onset of persistent daily headaches also so I have to try and treat it. They have for the most part gone but I don't want them to return.

I also saw ENT the week before last also. He also saw me as a walking wallet. Added on procedures to my consult like McDonalds upsell fries. I told him several times I wanted curette wax removal. He refused. He said microsuction is faster and safer. I told him no, I have pain hyperacusis and I can't even tolerate the most basic sounds. He insisted that it was safe and quiet. There was a power inbalance, I let him. It was so loud I jumped off the table. He lied. He did not care about my hyperacusis. I paid this man a lot of money and my ear has been fluttering ever since. I called the next day to complain and he wouldn't take my call. Just had his secretary say that the fluttering would not be caused by the microsuction. IT STARTED WITHIN SECONDS OF THE MICROSUCTION!!! I feel so used and abused. He still charged me for the procedure even though he didn't get anything out of one ear and I wouldn't let him near the other one.

I had another hearing test this week. Because I don't know the cause of tinnitus, I don't know if there is an active process in my body doing additional damage. All I do know is that my good ear (L) is now my bad ear. The last couple of weeks I am getting pulsatile tones in the left as well, and it feels muffled. I thought I was losing hearing but this audiogram was better than my last one. No one in my town does an extended test so I don't know what my hearing is like beyond the standard parameters but I am sure my tinnitus is a central nervous system thing for me. Everyone keeps telling me that the Ibuprofen I was taking for the persistent daily headaches would not be enough to cause tinnitus and the audiologist said my audiogram does not show ototoxic, viral, or autoimmune hearing loss. He showed me examples of hearing tests that were effected by such things. I don't know. I get told something different by everyone I speak to.

Today is going to be a bad day. I went to bed with hissing so hard on the 2 sides of my brain it gave me a headache. I slept poorly despite taking Amitriptyline, and woke with 2 hard core solid ring low tones in each hemisphere of my brain with ultra high pitch crackling out of my ears. I can't stand this anymore. It is pure fucking hell.

I guess on the bright side, my pain hyperacusis seems to have improved somewhat these last 3 days. Also, I had a better tinnitus day twice this week where I would give it a 3/10 for a few hours after waking (gets worse as the day goes on). I am paying for it though because they are always followed by 9/10 days. I know now my brain is capable of 3/10. Why can't it just stay that way? I see no pattern. It is just luck. I can't parent my children with the severe tinnitus but when I woke with the better tinnitus, my mood changed with it and I was able to enjoy my family.

Hearing test attached.

 

[AliasM]

Did you ever look into PLF yourself online and try herbal diuretic, sleeping with your head elevated, avoidance of any kind of bending over and straining etc?

I am assuming you are already avoiding salt and coffee.

When you describe your "atypical headache" as atypical, what is it exactly, is it more like pressure? And did it start right after your injury, you mean you did not have any headache before and the first time you had a headache was after the gym injury?

Thank you. Yes, I have never drank coffee but I am off all caffeine for 3 months now, not even chocolate and my salt intake is very very low. Under 500mg per day. I haven't been sleeping with my head elevated actually. I will try that starting tonight. Can you recommend a herbal diuretic?

Gym injury was the 22nd August. I had an instant catastrophic headache. The weight wasn't heavy. The pressure just went entirely into my brain to lift it though, instead of my arms and abs. Day 6 I went to emergency. They told me I had Idiopathic Intracranial Hypertension (after doing a lumbar puncture) and sent me home on Diamox. My ears started ringing a few days later. Google told me it was a side effect of Diamox and would go away when I stopped taking the drug so I was ok with the ringing. I knew IIH was a misdiagnosis and I wouldn't be on it long. I had no history of headaches prior to lifting the weight badly, no papilledema so the IIH diagnosis made no sense.

The neuro agreed it was a misdiagnosis and I weaned off Diamox by late October. The ringing and headaches were gone before I finished weaning. Early November I decided to go back to the gym. I would do a work out and leave with the worst headaches. I was doing low impact too but I kept going, thinking I was doing my body good by pushing through. By late November the headaches were back, daily. I first heard light tinnitus in my right ear early December. It went away but the headaches stayed, every single day. I saw doctor after doctor but they just told me to go home and take Ibuprofen. On the evening of the 23rd December the ringing was back and it was BAD. By the time I woke Christmas Eve though it was gone again. I had a good Christmas. No headaches for 5 days. On the evening of the 28th December I got another really bad headache and took more Ibuprofen. I woke on the 29th December to bad ringing and it has never gone away. It is both ears but moreso over my whole brain. Hyperacusis started about the 15th January. Pain hyperacusis right ear, no pain but hyperacusis left ear.

I thought the ear ringing in August/September was a side effect of Diamox but the neuro said maybe it was actually the headaches.

Two weeks ago the neuro diagnosed me with atypical migraine and put me on 20mg a day of Propranolol twice a day. I think the diagnosis is incorrect. Up until the 22nd August 2020 at the gym, I did not have a single headache ever in all of 2020. No history of headaches in my life and I'm 42. Sometimes they are pain headaches. Other times they are bad pressure changes in my brain, like my brain is sinking. I have had many many imaging tests as well as a repeat lumbar puncture. All come back completely normal.

My tinnitus is severe. I am not sure what I did to deserve this and I am not improving. Whatever caused this did some serious damage.

 

[Backpacker]

I haven't been sleeping with my head elevated actually. I will try that starting tonight.

OK, and also don't bend over during the day, your head should to be above your heart level all the time, at least for a month.

Can you recommend a herbal diuretic?

Dandelion root tea, 2-3 times a day.

I decided to go back to the gym. I would do a work out and leave with the worst headaches

Avoid any kind of straining.

 

[AliasM]

Thank you.

 

[AliasM]

It has been 13 days since I let the ENT microsuction my left ear. My left ear was my good ear. Right ear has pain hyperacusis. The left had very mild reactions to some sounds but all in all it was good. Now it is reacting quite badly to sound and getting the slightest bit of pain.

I developed pain hyperacusis 2 weeks after onset of tinnitus in my right ear so this 2 week window since microsuction I fear is no coincidence. I feel so angry with myself for letting him do it. I went in there, armed with all of the information from this forum, knowing that I was not going to allow it. There was a power balance, the ENT insisted and I let him.

Far out I hope this doesn't become a thing. I just need to keep my anxiety under control. Shit.

 

[Jane42]

It has been 13 days since I let the ENT microsuction my left ear. My left ear was my good ear. Right ear has pain hyperacusis. The left had very mild reactions to some sounds but all in all it was good. Now it is reacting quite badly to sound and getting the slightest bit of pain.

I developed pain hyperacusis 2 weeks after onset of tinnitus in my right ear so this 2 week window since microsuction I fear is no coincidence. I feel so angry with myself for letting him do it. I went in there, armed with all of the information from this forum, knowing that I was not going to allow it. There was a power balance, the ENT insisted and I let him.

Far out I hope this doesn't become a thing. I just need to keep my anxiety under control. Shit.

I just want to say that I am so sorry for your struggles. Being in this position now, I know how others, doctors, and even close family members can minimize the very real suffering you are going through. When I called my doctor the advice was, 'take two Tylenol and it should go away in 48 hours'.

I am also sorry that you were coerced into letting your ENT do that procedure. I was in a similar situation about a year ago where I went to see a doctor who advised me, on the spot, to have a procedure done that was not related to my visit. I said no again and again, until I finally relented and let him do it. Turns out that I didn't need this procedure. Afterwards, I felt assaulted. And I paid the bill! Which looking back, I should have refused to do. He did call and apologize to me about a week later. The least he could do...

In the future I am prepared to get up and walk out if a doctor recommends something that I disagree with, no matter how much they insist. You are very right that the power imbalance affected you. This is especially hard now with COVID-19 because they do not let you bring anyone into the exam room with you (ie no advocate).

I hope your experience (and mine) will help someone else when presented with a request to do an unexpected office procedure immediately.

 

[Sayeed]

Thank you Tweedly. I have been having the pressure too. In my head, sides of nose, eyebrows and forehead. Sometimes with pain sometimes without. This only started around the same time tinnitus did. Sometimes it felt like my brain was sinking.

Due to the pressure I was investigated for raised intracranial pressure and CSF leak. I had a lumbar puncture and more but all clear. No answers as to what the pressure thing is. It has settled a bit compared to December and January but it still surfaces periodically. The tinnitus hasn't settled at all though. If anything my left ear, which was my better ear, is way worse. I was devastated when my MRI, MRA and CT brain came back normal. I wanted them to find something they could treat. The doctor's words "good news, your imaging is all clear" brought tears of devastation, not joy. I can't think of any other condition where I would wish for abnormal imaging results.

I hope you are ok. How are you coping mentally? This started December 2020 for you too, right?

I feel for you. Same exact thing. I'm having a ton of tests done and I almost want them to find something wrong but the MRI came back clean... next is MRA.

At least you are not alone. We are in the same boat. I won't let it sink if you won't.

 

[Sara May]

Finding the right antibiotic may greatly help ear pressure if needed

Dear Greg Sacramento.

What antibiotic would you suggest if you suspect the ear pressure (and general head pressure) is due to an infection?

Thank you very much.

 

[Forever hopeful]

It could go three ways:

1. Get quieter
2. Get louder
3. Stay the same

But nobody can predict what happens with yours. If yours has been the same for a few months, the chances of it getting quieter reduce.

You can habituate though. Habituation can take up to 24 months.

For me, mine eventually went away x2. Once noise induced (resolved completely after about 2 years), once due to hearing loss caused by a virus (resolved completely after about 15 months). My hearing improved. Go figure. They always said sensorineural hearing loss was permanent but I had hearing loss recovered to a certain degree.