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

[AliasM]

Hello, I'm new so thought I would start in the intro section. I am a 42-year-old stay at home mother of 4. I live in Australia. Now that my baby is 2 I had planned to return to work this year but tinnitus has just hit me hard, socially, emotionally, psychologically.

What could have triggered this?

Late November I started getting headaches. There were 2 distinct headaches - right side temporal region, and a global pressure on top of it. They were daily and relentless. I was taking Ibuprofen through the day and even through the night (e.g. waking at 2am with extreme headache) but not taking Ibuprofen more than the label. Still just 6 hourly, sometimes less frequently.

I noticed tinnitus one day early December whilst sitting at my desk. I remember thinking it were odd because I had only had it after one or 2 concerts previously in my life (I never went to many), and while I was taking Diamox for a short period of time in 2020 (a known common side effect and tinnitus went away as soon as I lowered dose to wean off). The tinnitus I first noticed early December went away after a few hours and I didn't hear it again until 23 December 2020 when it returned suddenly and I couldn't sleep because of it. By Christmas Eve morning though, tinnitus was gone again. Note that my headaches eased the week before Christmas so no Ibuprofen or headaches in the days before the 23 December when tinnitus returned.

On 28 December, tinnitus went from 0 to 100 and hasn't gone away since. I got the headache back the night before coincidence or not, and took some Ibuprofen.

I don't know why I was having such extreme headaches. I had a stint of the exact same ones late August (right temporal with global pressure) and a lumbar puncture suggested increased intracranial pressure hence the Diamox. A neurologist disagreed with the emergency room diagnosis of intracranial hypertension due to good eye exam/retina images/field of vision test, and took me off Diamox. I weaned down, then weaned off Diamox late October. Headaches returned late November.

One cause of the headaches could be autoimmune as I have autoimmune disease but was managing ok so not taking the Methotrexate I was prescribed. They did not think the temporal headache was Temporal Arteritis as I am too young, and even though my ESR was high at 25, it would have been in the hundreds. No other reason for the headaches. I have never in my life suffered headaches or migraines before.

Hearing test late December showed normal for age. A hearing test 4 days ago put me just above the mild hearing loss range. They will repeat the test next week. She said maybe I just couldn't hear the tones because of tinnitus, but they are concerned all the same. The thing is I had tinnitus during the 30 December hearing test and I could 100% hear those tones but a few days ago I could not.

Anyway... doctors have been no help so I have been doing trial and error on my own. I had no idea Ibuprofen was ototoxic so I stopped taking it 1 January, 2021. Doctors still keep telling me it is fine to take though, and that they only worry about longer term use in older patients with renal issues. I know I shouldn't but I stopped my blood pressure meds too. I ended my diuretic Hydrochlorothiazide on 1 January, 2021 (I had been on that for nearly 4 months, 25mg day) and I stopped my Micardis (Telmisartan which is an ARB) 2 days ago. I've been on that for 2 years.

I keep a pain diary which is useful when speaking to my rheumatologist every 6 months. I made an entry on 4 December that my nose had become really stuffy all of a sudden, sinuses blocked but no sinus infection. That is around the time I first heard tinnitus in early December but I didn't write tinnitus down in the diary so don't know the exact date. I have been using a nasal decongestant spray ever since. Once or twice a day.

The only things I am taking now are Vit D, Vit B every second day, Iron every second day (as I am on the low side), and Claratyne (which my doctor suggested to try although I have no heyfever). I will stay off my Telmisartan a week max and monitor BP at home.

What else... I had a lot of pain in my ear after tinnitus set in for good late December. One doctor syringed my ears for wax, another gave me a course of Amoxil. Every now and then I notice pressure changes in my ears and I have to equalise by yawning or blowing gently whilst holding my nose. It isn't severe, and it isn't all the time... but this is not something I have ever had to do before now apart from when flying.

I don't think there is anything else to add. I had a terrible cough all through November if that is relevant. No other cold or flu symptoms, just a cough and I did 2 courses of antibiotics. The cough ended when the headaches started.

I am not coping with tinnitus. I cry all day long. I have cancelled my social calendar, my kids' calendars and I can't function. I have never suffered depression in my life but here we are. I called a mental health crisis line twice last week. My older child (age 15) has been watching my youngest for me because I am not coping. This ringing is extreme. Doctors are so dismissive. Told me to learn to live with it and do CBT. I know CBT doesn't work for me because I have tried it before. I have a referral to see an ENT but I am told my case is not urgent because it is 'just tinnitus' and I could be waiting up to a year because they are so busy due to COVID-19.

I am not doing well. Doctors don't care, Google tells me it's permanent, and I am in the 'my life is over' mindset. I miss my old life so much. Life was great. Good relationship, great kids, no financial stress, no conflict in our lives, no stress. I had no idea Christmas Day what was just around the corner for me. My life has spiralled out of control ever since. My husband is great but he is like my carer right now because I can't pick myself up. All I do is cry and have anxiety attacks. I can't even escape this noise in the shower. I went grocery shopping last week and had to abandon cart and get home ASAP because all I could hear was tinnitus. I panicked.

This is not me. I WAS a confident, level headed, and very capable individual. Now I can't even buy food.

Please please help.

EDIT: doctor gave me 25mg Prednisone for 2 days which I took 31 December and 1 January. It did seem to help, but (coincidence or not) tinnitus really worsened.

Also, I am sensitive to sound. I have to vacuum the floor with headphones now (nothing playing, just to soften the sound). Car doors closing makes me cringe, my husband talks too loud, and I gave feedback yesterday that the music level in a restaurant was too high. Is this normal? None of these things were an issue before.

 

[Ilias T]

Hello there. We accidentally have a very similar name too. I have had tinnitus for almost 4 years and there is no exact explanation as to why it happens. There are some theories as to how it happens but no-one knows for sure. I have a spike right now and I am in a similar situation.

My advice is this: Don't do anything stupid like going to a concert, and headphones are now a thing of the past, don't use them even at low volume. Always find a quiet room everyday to rest, and avoid loud traffic if possible.

If you have a known disease that your doctor diagnosed, try to explain your situation with as many details as possible, and hopefully it will grab his attention to examine you further. If you think you have something unknown, look for another doctor.

I have an appointment in 10 days and hopefully this doctor will restore my broken mind.

You said you have a husband that keeps you up and you have an income, so you have so much time, don't worry.

Don't give up yet, there is help.

 

[AliasM]

Thank you for your reply. I am losing my mind, I'm a wreck.

 

[Ilias T]

There are some treatments on the way.

Check threads about FX-322 (Frequency Therapeutics).

 

[Greg Sacramento]

@AliasM Your Erythrocyte Sedimentation Rate (ESR) was measured at 25. What was your C-Reactive Protein (CRP) measured at? Monoclonal gammopathies should be screened if you have wide dissociation between the ESR and CRP.

Headaches started after flu symptoms, (sinuses blocked) may mean an infection is causing pressure changes in your ears. Serum protein electrophoresis (SPEP) to see if plasma viscosity, paraproteins, or elevated fibrinogen may be causing your headaches.

CRP can adhere to bacteria and activate phagocytosis. CRP responds rapidly to inflammation, both rising and falling more quickly than ESR. CRP is more stable and less affected by other serum components compared with ESR. When there is wide dissociation between the ESR and CRP even with moderate elevated ESR, a monoclonal protein should be suspected. In Temporal Arteritis, neither the ESR nor the CRP is a specific biomarker. So most likely, you don't have that or intracranial hypertension. You mention an autoimmune disease and taking Methotrexate. If it's Lupus or rheumatoid arthritis, then more reason to have blood work carefully examined. You mention 2 courses of antibiotics. Was one prednisone?

Post your hearing tests to me next week. A lumbar puncture can cause headaches, but your procedure is after the fact. Finding the right antibiotic may greatly help ear pressure if needed. I will work with you.

 

[twa]

Hello, I'm new so thought I would start in the intro section. I am a 42-year-old stay at home mother of 4. I live in Australia. Now that my baby is 2 I had planned to return to work this year but tinnitus has just hit me hard, socially, emotionally, psychologically.

What could have triggered this?

Late November I started getting headaches. There were 2 distinct headaches - right side temporal region, and a global pressure on top of it. They were daily and relentless. I was taking Ibuprofen through the day and even through the night (e.g. waking at 2am with extreme headache) but not taking Ibuprofen more than the label. Still just 6 hourly, sometimes less frequently.

I noticed tinnitus one day early December whilst sitting at my desk. I remember thinking it were odd because I had only had it after one or 2 concerts previously in my life (I never went to many), and while I was taking Diamox for a short period of time in 2020 (a known common side effect and tinnitus went away as soon as I lowered dose to wean off). The tinnitus I first noticed early December went away after a few hours and I didn't hear it again until 23 December 2020 when it returned suddenly and I couldn't sleep because of it. By Christmas Eve morning though, tinnitus was gone again. Note that my headaches eased the week before Christmas so no Ibuprofen or headaches in the days before the 23 December when tinnitus returned.

On 28 December, tinnitus went from 0 to 100 and hasn't gone away since. I got the headache back the night before coincidence or not, and took some Ibuprofen.

I don't know why I was having such extreme headaches. I had a stint of the exact same ones late August (right temporal with global pressure) and a lumbar puncture suggested increased intracranial pressure hence the Diamox. A neurologist disagreed with the emergency room diagnosis of intracranial hypertension due to good eye exam/retina images/field of vision test, and took me off Diamox. I weaned down, then weaned off Diamox late October. Headaches returned late November.

One cause of the headaches could be autoimmune as I have autoimmune disease but was managing ok so not taking the Methotrexate I was prescribed. They did not think the temporal headache was Temporal Arteritis as I am too young, and even though my ESR was high at 25, it would have been in the hundreds. No other reason for the headaches. I have never in my life suffered headaches or migraines before.

Hearing test late December showed normal for age. A hearing test 4 days ago put me just above the mild hearing loss range. They will repeat the test next week. She said maybe I just couldn't hear the tones because of tinnitus, but they are concerned all the same. The thing is I had tinnitus during the 30 December hearing test and I could 100% hear those tones but a few days ago I could not.

Anyway... doctors have been no help so I have been doing trial and error on my own. I had no idea Ibuprofen was ototoxic so I stopped taking it 1 January, 2021. Doctors still keep telling me it is fine to take though, and that they only worry about longer term use in older patients with renal issues. I know I shouldn't but I stopped my blood pressure meds too. I ended my diuretic Hydrochlorothiazide on 1 January, 2021 (I had been on that for nearly 4 months, 25mg day) and I stopped my Micardis (Telmisartan which is an ARB) 2 days ago. I've been on that for 2 years.

I keep a pain diary which is useful when speaking to my rheumatologist every 6 months. I made an entry on 4 December that my nose had become really stuffy all of a sudden, sinuses blocked but no sinus infection. That is around the time I first heard tinnitus in early December but I didn't write tinnitus down in the diary so don't know the exact date. I have been using a nasal decongestant spray ever since. Once or twice a day.

The only things I am taking now are Vit D, Vit B every second day, Iron every second day (as I am on the low side), and Claratyne (which my doctor suggested to try although I have no heyfever). I will stay off my Telmisartan a week max and monitor BP at home.

What else... I had a lot of pain in my ear after tinnitus set in for good late December. One doctor syringed my ears for wax, another gave me a course of Amoxil. Every now and then I notice pressure changes in my ears and I have to equalise by yawning or blowing gently whilst holding my nose. It isn't severe, and it isn't all the time... but this is not something I have ever had to do before now apart from when flying.

I don't think there is anything else to add. I had a terrible cough all through November if that is relevant. No other cold or flu symptoms, just a cough and I did 2 courses of antibiotics. The cough ended when the headaches started.

I am not coping with tinnitus. I cry all day long. I have cancelled my social calendar, my kids' calendars and I can't function. I have never suffered depression in my life but here we are. I called a mental health crisis line twice last week. My older child (age 15) has been watching my youngest for me because I am not coping. This ringing is extreme. Doctors are so dismissive. Told me to learn to live with it and do CBT. I know CBT doesn't work for me because I have tried it before. I have a referral to see an ENT but I am told my case is not urgent because it is 'just tinnitus' and I could be waiting up to a year because they are so busy due to COVID-19.

I am not doing well. Doctors don't care, Google tells me it's permanent, and I am in the 'my life is over' mindset. I miss my old life so much. Life was great. Good relationship, great kids, no financial stress, no conflict in our lives, no stress. I had no idea Christmas Day what was just around the corner for me. My life has spiralled out of control ever since. My husband is great but he is like my carer right now because I can't pick myself up. All I do is cry and have anxiety attacks. I can't even escape this noise in the shower. I went grocery shopping last week and had to abandon cart and get home ASAP because all I could hear was tinnitus. I panicked.

This is not me. I WAS a confident, level headed, and very capable individual. Now I can't even buy food.

Please please help.

EDIT: doctor gave me 25mg Prednisone for 2 days which I took 31 December and 1 January. It did seem to help, but (coincidence or not) tinnitus really worsened.
Also, I am sensitive to sound. I have to vacuum the floor with headphones now (nothing playing, just to soften the sound). Car doors closing makes me cringe, my husband talks too loud, and I gave feedback yesterday that the music level in a restaurant was too high. Is this normal? None of these things were an issue before.

@AliasM,
We have so many similarities in our story. I'm also a mom, also have an autoimmune, had concern about temporal arteritis. It was ruled out for me, but I also have temporal headaches. I think mine is related to clenching my jaw and stress. I have hyperacusis too, it is hard to be a mom and be sensitive to sound. My husband talks loudly and works from home. Yes, car doors are the worst especially with kids! :-(

 

[twa]

@AliasM Your Erythrocyte Sedimentation Rate (ESR) was measured at 25. What was your C-Reactive Protein (CRP) measured at? Monoclonal gammopathies should be screened if you have wide dissociation between the ESR and CRP.

Headaches started after flu symptoms, (sinuses blocked) may mean an infection is causing pressure changes in your ears. Serum protein electrophoresis (SPEP) to see if plasma viscosity, paraproteins, or elevated fibrinogen may be causing your headaches.

CRP can adhere to bacteria and activate phagocytosis. CRP responds rapidly to inflammation, both rising and falling more quickly than ESR. CRP is more stable and less affected by other serum components compared with ESR. When there is wide dissociation between the ESR and CRP even with moderate elevated ESR, a monoclonal protein should be suspected. In Temporal Arteritis, neither the ESR nor the CRP is a specific biomarker. So most likely, you don't have that or intracranial hypertension. You mention an autoimmune disease and taking Methotrexate. If it's Lupus or rheumatoid arthritis, then more reason to have blood work carefully examined. You mention 2 courses of antibiotics. Was one prednisone?

Post your hearing tests to me next week. A lumbar puncture can cause headaches, but your procedure is after the fact. Finding the right antibiotic may greatly help ear pressure if needed. I will work with you.

Can you expand a little further on "In Temporal Arteritis, neither the ESR nor the CRP is a specific biomarker. So most likely, you don't have that or intracranial hypertension.". My case is very similar and I was checked for Temporal Arteritis. I have wondered about intracranial hypertension. Are you familiar with the Vectra test for inflammatory markers?

Thank you,
twa

 

[Greg Sacramento]

@twa @AliasM
I don't think that either of you need to worry about Temporal Arteritis or intracranial hypertension.

@twa - besides jaw problems, do you know of any other issues that associate to your tinnitus.

Found CRP to have a higher sensitivity than ESR (96 vs 83%) for detecting GCA in a North American population of Aboriginal descent. Unlike systemic lupus, thus far, none of the four (of 84 currently known) studied polymorphisms in the CRP gene have been shown to confer susceptibility to GCA, nor its clinical presentation (polymyalgia rheumatica, ischemic complications) ... compensating mechanisms in the form of inflammation-induced angiogenesis have been activated...

Giant cell arteritis (GCA) is the most common idiopathic systemic vasculitis affecting largeand medium-sized arteries in adults over the age of 50 years. It classically presents as headache, scalp tenderness, amaurosis fugax, diplopia, jaw and/or tongue claudication or a combination of these, accompanied by an intense acute-phase response. Polymyalgia rheumatica symptoms develop in 40–60% of patients. GCA can be an ophthalmologic emergency, with complete vision loss due to anterior ischemic optic neuropathy. Visual loss may occur in up to 13–50% of patients and is often irreversible. The second eye also has a high probability of becoming affected within 1–2 weeks, if left untreated. Early and accurate diagnosis of GCA is therefore critical so that high-dose corticosteroids can be started to prevent ischemic complications. The diagnosis of GCA can pose serious challenges. Not all patients present with the classic combination of symptoms listed above, in particular, those with vision loss. Up to 15% of patients can have fever of unknown origin as their initial presentation. Other atypical presentations include isolated aortic arch syndrome with arm claudication, large vessel vasculitis with lower extremity claudication, stroke, vertebrobasilar insufficiency, aortic dissection or thoracic aortic aneurysms.

utility-of-creactive-protein-in-the-diagnosis-of-giant-cell-arteritis-better-than-the-erythrocyte-sedimentation-rate.pdf (openaccessjournals.com)

best_tests_mar2011_temporal_arteritis_pages12-13.pdf (bpac.org.nz)​

 

[twa]

@Greg Sacramento,
Thank you~ I have RA with a Sed Rate of 9 and CR-P of less than .40%. My Vectra Test came back moderate at 36 from 15 a year a half ago. I am not on Hydroxychloroquine due to the tinnitus/possible hearing loss 16 weeks ago. I am doing the Autoimmune Protocol. When this started, my young son yelled directly into my ear and I started having symptoms.

Just curious, are you in healthcare?

 

[Greg Sacramento]

Thank you~ I have RA with a Sed Rate of 9 and CR-P of less than .40%. My Vectra Test came back moderate at 36 from 15 a year a half ago. I am doing the Autoimmune Protocol. When this started, my young son yelled directly into my ear and I started having symptoms.

RA with your lab results can cause tinnitus for a woman approaching middle age. If you also experienced hyperacusis, that should resolve.

Mucous membranes and moisture-secreting glands of your mouth may be be the RA carry from mouth to hearing nerves. So if you clench your teeth, use a mouth guard.

Continue with Autoimmune protocol.

 

[twa]

RA with your lab results can cause tinnitus for a woman approaching middle age. If you also experienced hyperacusis, that should resolve.

Mucous membranes and moisture-secreting glands of your mouth may be be the RA carry from mouth to hearing nerves. So if you clench your teeth, use a mouth guard.

Continue with Autoimmune protocol.

My doctor wants me to start Methotrexate, which can cause tinnitus. I'm going to continue the Autoimmune Protocol and try to do without drugs. I do have hyperacusis. Are you saying the hyperacusis should resolve?

Thank you for the input.

twa

 

[Greg Sacramento]

Methotrexate is a slight concern for teenagers and those over 60. For your age, it's about zero.

 

[AliasM]

Thank you for the replies. I am incredibly anxious right now so won't respond to individuals above (but thank you so much for your replies and I will come back and address specific points).

I just wanted to say that I am supposed to take my second dose of Methotrexate tonight and I am incredibly scared to do that. I don't know if I should. I am so protective of my ears now. At the same time I am almost certain this is autoimmune based for me. In fact everything I read says I should be on steroids, stat... but I have had such bad health advice from doctors. They have no idea.

 

[Ilias T]

@AliasM

Hi again. I hope this helps you a bit. My spike stopped and my stuffed ear is back to normal. Things can get better

 

[AliasM]

2 months ago life was great. Now I just want to die. I can't go on another 40-50 years like this.

Why me?

The world seems to be going on. My friends and family are living life without this. I was too and then next minute my life is turned upside down. I don't even know why. My hearing is perfect... maybe from some headaches I had, a cough I had, the Ibuprofen I took?

I don't want to do anything, see anyone, talk to anyone or even be a parent anymore. My husband is doing great on his own with our babies whilst I wallow and wish life away. At least if it was terminal you could estimate an end date, but it's not.

Don't tell me I will habituate. No one can habituate to this screaming in their head. It isn't a reasonable likelihood that this sound can be ignored. It's not just a sound either. My brain is sizzling and vibrating.

I've gone from keeping fit and active to living on sleeping pills, pain pills, anxiety meds, and more. What an existence. Even after a Valium and a Phenergan, I wake every sleep cycle from the screaming and it takes 2 or so hours to fall asleep again, usually from exhaustion.

I can't stand scrolling through Facebook and seeing all my friends and family happily doing life as I once did, without the eternal high pitched screaming. Why me? I would chose pretty much anything over this hell.

Not fair.

 

[ajc]

2 months ago life was great. Now I just want to die. I can't go on another 40-50 years like this.

Why me?

The world seems to be going on. My friends and family are living life without this. I was too and then next minute my life is turned upside down. I don't even know why. My hearing is perfect... maybe from some headaches I had, a cough I had, the Ibuprofen I took?

I don't want to do anything, see anyone, talk to anyone or even be a parent anymore. My husband is doing great on his own with our babies whilst I wallow and wish life away. At least if it was terminal you could estimate an end date, but it's not.

Don't tell me I will habituate. No one can habituate to this screaming in their head. It isn't a reasonable likelihood that this sound can be ignored. It's not just a sound either. My brain is sizzling and vibrating.

I've gone from keeping fit and active to living on sleeping pills, pain pills, anxiety meds, and more. What an existence. Even after a Valium and a Phenergan, I wake every sleep cycle from the screaming and it takes 2 or so hours to fall asleep again, usually from exhaustion.

I can't stand scrolling through Facebook and seeing all my friends and family happily doing life as I once did, without the eternal high pitched screaming. Why me? I would chose pretty much anything over this hell.

Not fair.

FYI, most people think they can't habituate to tinnitus. They think this way for the first 1-12 months.

Then the brain gets bored of the sound and it lets you live with the noise even if it's fucking annoying.

There is a tiny number of people who have to commit suicide because their brains fail to adjust over time, but it's very unlikely you'll belong to that group. I hope you're seeing a psychologist / counselor to hold your hand while the brain is adjusting?

With regards to "why me" - there is no rhyme or reason to life. Some people have bad luck, but everyone has some shit going on in their life even if it doesn't show outside.

 

[cruise]

@AliasM

Every single tinnitus sufferer has felt what you feel now. I did and it was very hard. I too thought or felt that it would never change. But with time, the sounds lose their power to change your mood. That will happen because that is how our brains work. For now, you have to be brave and patient. One day, when tinnitus doesn't mean anything to you anymore, you will look back and think: how was that boring insignificant noise able to make me feel so bad??

 

[AliasM]

Thank you for your replies. I am merely existing right now, not living. Every hour of every day is hard. I am barely making it through the day.

I saw a psych yesterday. I waited 3 weeks for that appointment and it went really really badly. She was awful, and dismissive and wasn't listening to me at all. I left in a really bad state.

I am going to end up in a psych ward any day now. I cannot handle this noise in my head and the vibrating in my brain.

Was your tinnitus loud? I don't know how I can habituate to this. It is louder than any environmental noise.

 

[cruise]

I am going to end up in a psych ward any day now.

At some point I had these same thoughts. But I sat it out and I was fine. It was hard, but I made it. So can you.

Was your tinnitus loud?

It fluctuated a lot and on loud days I could hear it anywhere. I could even hear it during flight on a plane. It can still be loud sometimes but I don't care anymore because it does not mean anything to me and that is why it does not sound so loud anymore or even does not enter my awareness.

I don't know how I can habituate to this.

It is not you that is not going to habituate, your brain will do that for you. It will happen slowly but surely. You don't have to do anything but sit and wait. The waiting game is very hard, but you can do it!

 

[AliasM]

2 months and counting for my tinnitus. Numerous possible causes apart from noise/hearing loss which there is/was none. Possibilities include ototoxicity from blood pressure meds, Ibuprofen, migraines, autoimmune, possible ETD (which only started after tinnitus). Doctors kept refusing steroids so I never had them.

Anyway, it is screaming loud 24/7. Environmental noise and psychotherapy isn't helping. Apps aren't helping either, day or night. It is too loud and intrusive and I have become so sensitive to sound, I can't stand the apps.

Can I expect this will settle into a more comfortable and quieter baseline? Did yours quieten down after a few months? Or is this baseline?

 

[ajc]

Can I expect this will settle into a more comfortable and quieter baseline? Did yours quieten down after a few months? Or is this baseline?

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.

 

[AliasM]

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.

I won't make it 24 months, especially if your point 2 or 3 are what my future looks like.

 

[AliasM]

I just watched a clip on YouTube where you could listen to sounds and determine the pitch of your tinnitus. I did this, and a high pitch noise came through my phone loud. Tinnitus in my left ear has now instantly ramped up in pitch and volume.

I am panicking.

Tell me this is a temporary set back. I always hear people talking about their pitch so I saw the video there when scrolling so thought I would try and determine mine. FML.

 

[Ava Lugo]

FYI, most people think they can't habituate to tinnitus. They think this way for the first 1-12 months.

Then the brain gets bored of the sound and it lets you live with the noise even if it's fucking annoying.

There is a tiny number of people who have to commit suicide because their brains fail to adjust over time, but it's very unlikely you'll belong to that group. I hope you're seeing a psychologist / counselor to hold your hand while the brain is adjusting?

With regards to "why me" - there is no rhyme or reason to life. Some people have bad luck, but everyone has some shit going on in their life even if it doesn't show outside.

But what if you have reactive tinnitus or unmaskable tinnitus? I believe you can definitely habituate to mild tinnitus or tinnitus that is easily masked to where you don't hear it during the day. I could live that type of tinnitus just fine but what about when you have unmaskable tinnitus like reactive tinnitus for example. Can anyone on earth habituate to intrusive reactive tinnitus?

 

[AliasM]

I've had tinnitus 2.5 months - cause unknown. Tinnitus in both ears and my head 24/7.

Questions below:

1. I had a few 4/10 days last week and I thought FINALLY I am getting better and coming down in baseline. Now I am back up to 7/10 for no reason. I would really like to get down to a 2/10 baseline that so many people enjoy. Can baseline still come down after 2.5 months? Even my few "good" 4/10 days were not that comfortable or enjoyable but certainly better than what I have now.

2. My ringing turned into a chirp or hiss quite a while ago. I'd only get ringing when I went to sleep. I am back to solid ringing during the day now as well. It is so much less comfortable. It is also a lower tone to what I am use to. What does this mean? I read so often that hissing is healing. Is this a temporary setback do you think?

3. My tinnitus is definitely not pulsatile, but ONLY when I lay my head down on the pillow do I notice that the solid ring tone accelerates and decelerates in time with my heart beat. Do others get this or do I have a pulsatile component? I do not notice this at all when upright.

Thank you.

 

[annV]

Can baseline still come down after 2.5 months?

Yes, it can after 3 years:

My Tinnitus Is Almost Gone After 3 Years: It's Now a Faint Ringing — No Longer Hyperacusis Either

What does this mean? I read so often that hissing is healing. Is this a temporary setback do you think?

Hissing is not healing. There is no evidence of such. It's not a setback. Tinnitus can change.

when I lay my head down on the pillow do I notice that the solid ring tone accelerates and decelerates in time with my heart beat. Do others get this or do I have a pulsatile component? I do not notice this at all when upright.

I sometimes have this too, I don't think it's pulsatile tinnitus but rather physiological, body going in that position.

 

[AfroSnowman]

But what if you have reactive tinnitus or unmaskable tinnitus? I believe you can definitely habituate to mild tinnitus or tinnitus that is easily masked to where you don't hear it during the day. I could live that type of tinnitus just fine but what about when you have unmaskable tinnitus like reactive tinnitus for example. Can anyone on earth habituate to intrusive reactive tinnitus?

I don't know, but on my better days I am able to push it out of my mind even though it is unmaskable and a bit reactive. On my better days I can see how habituation even in the face of endless unremitting tinnitus can happen, then on my bad days I question the value of living this way. My point is I think it is possible to achieve habituation even with really bad tinnitus, it is just really hard and is going to take both time and work.

 

[AliasM]

Please help as I am panicking.

Tinnitus is often in my brain, not my ears. If I block my ears, 50% of the time I just hear silence but my tinnitus is LOUD all the time, 24/7. At the moment it is all over my brain, and I feel it too. My brain is like a can of soda, I feel the vibration and it is unnerving. Since this sensation started around 3pm, I have had pressure changes in my forehead and right temple and I feel dizzy as well.

All my scans are normal and doctors are done with me. This is surely not damn normal though. I am having a panic attack right now. What is going on inside my head? My whole brain is going insane.

Further, when I press my scalp, even lightly, I feel pressure changes, and tinnitus revs every time I press.

Do others have this? I am losing my mind. About to call a mental health crisis. This is all on the end of one of my "better" tinnitus days.

I just want to add though that this is some serious abnormal neurology here, this isn't normal. I have seen so many doctors and they don't know or care. My brain and head now feel really heavy. I won't go to emergency. Between December and January I went 11 times (8 times before tinnitus started) and they threw me out every single time because the CT was normal. Never mind that my headaches were intense.

Me again, talking to myself to calm myself down. Nothing comes up in Google about brain ringing and sizzling. I am sick of reading about auditory damage and hearing loss. It doesn't apply to me but that is all any of the sites go on about when you read about tinnitus. My ears aren't ringing... my brain is. Hard.

 

[AliasM]

My arms kept going numb overnight.

 

[Forever hopeful]

@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.