It’s a Strange New World — Tinnitus Connected to Migraines/Barorauma/Sinus Issues?

[Tweedly]

So, here I am. After reading the forum for the last months I thought it'd be nice to introduce myself and my "case".

I am Ruben, a social worker from Holland. I've been working in the humanitarian field in Greece in a refugee camp for the last 3 years. Recently I started to relocate to Turkey to continue my life there.

Last November I started to have issues with pressure in my head. I thought nothing of it at first since I have been having migraine/tension headaches since I was a child and the headaches were usually accompanied by the same pressure.

However, as time went on this felt a bit different. The pressure started to come in waves, without the headache, which was new. I decided to visit my GP on a visit to Holland.

After the flight to Holland landed, I started to get a severe headache that only very slowly went away. A day later the ringing started.

The GP gave me nasal spray. Didn't work. Then later I managed to get antibiotics. Didn't work. ENT visit, more (different) antibiotics, plus Prednisolone and nose drops. Didn't work. CT scan was made but came back clear (some minor things that didn't concern the doctor). Got referred to the Neurologist and had an MRI + Angiogram done. The results of that will come in next week.

Also I've been referred to a physiotherapist that specializes in TMJ/neck/tension/headaches and she gave me some exercises for jaw clenching and neck tension.

My symptoms kind of split up in two (but are probably connected). I have a constant feeling of pressure in my forehead/bone of my nose. This pressure sometimes intensifies and becomes a full blown pressure attack. Mostly without pain, sometimes with pain. Also the pressure seems to be in my ears. They can feel full on or off and swallowing often results in a clicking sound/sensation.

Then the tinnitus. I have a high buzz, sometimes it's a tone, of around 15 kHz in my right ear. Funny thing is it also seems to pulsate. So It's a steady tone that has peaks (like electrical pulses) that are not in rhythm with my heartbeat. When I move my jaw back, the volume goes up for a second or two. This tone is often heard during night and daytime, depending on the activity (showering or driving can mask it).

Then there are a bunch of other tones in my left and right ear. Low, middle and some metallic chiming on the background. But mostly those are only heard in the night or in quiet rooms.

I have just started this horrible journey. Three months in. The first month was the most severe. Pressure attacks came daily and felt like my head was full of electricity. It was both a sound and a feeling. Then slowly things settled down a bit. The attacks became a bit less frequent and less "electrical".

However, things are definitely not dissipating. I still have very severe pressure attacks and the ringing tone in my right ear is as present as ever.

Needless to say I've been dealing with anxiety and depression. Not only because of the ringing, but also the pressure.

The neurologist hinted on a possible connection with the migraine issues. If the MRI/MRA comes back clear that worries me the most. I would love to start the habituation process if that's the case. But it feels difficult to habituate to a condition that also involves these pressure attacks that in turn affect the tinnitus.

Long story short, I am usually a very positive person, but am afraid this might be something that I will make that view on life extremely hard.

 

[billie48]

Welcome to the forum. I am no doctor so I cannot comment on the pressure issue. But mentally I believe habitation is possible if we have full acceptance of the symptoms at hand. It won't be overnight but your conditions have improved and that is a good sign. Given time, with full acceptance and positive attitude, your brain will likely learn to ignore these symptoms if slowly. Try to focus on other aspects of life and pursue your goals and give it time. All the best. Take good care. God bless your recovery.

 

[Tweedly]

Hey thanks @billie48 !

You've been around here for quite a while I can see... Hope you're doing well in life and are happy with who you are and life in general...

As I thought, my scans came in clean. So the Neurologist went back to the migraine theory. Which I tend to agree with. It sounds logical anyway. She prescribed me Amytriptyline for this, low dosage, 10mg daily for 2 weeks and then 20mg daily for 2,5 more months. But I am hesitant to start this course considering the listed side effect being tinnitus....

From reading a lot about this affliction in the past months I kind of arrived at the theory that the central issue always is the brain.
It seems to me like after trauma maybe the brain just turns up the gain to make up for hearing loss, no matter how it came to be, resulting in background noise. Enter tinnitus. Personally I can back this up by realizing I actually here a bit more then before, some high tones etc are more noticable.

Whether induced by physical hair cell loss, or synapse loss, or no physical loss but stress induced, it is always the brain that should then provide noise cancelling for the tinnitus. Which it does in most people regardless of age related or other hearing loss.

So in my case maybe the migraines finally altered the structure of my brain enough to cause issues in this noise cancelling feature and created other nerve issues, resulting in permanent pressure in my head.

Hoping the brain is able to reverse these issues, but from reading a lot here that seems like a long shot.

 

[AliasM]

Hi again Tweedly (thank you for posting in my intro thread).

So much of what you have written I could have said so myself with the head pressure and more. I was having this brain pressure and headaches starting November also. Exactly the same as you. I heard tinnitus a few times early to mid December but it went away. I was headache and symptom free from about the 22nd to the 28th December. On the night of the 28th I came down with another massive pressure headache and I have had tinnitus ever since. Can't be a coincidence even though doctors tell me it is. I wish they would just say they don't know... then I would have more respect for them - as people and a profession.

How is your hearing? Have you had a test? Even though my worst is 25 dB at 8 kHz... and isn't too bad on the scheme of things, I have a feeling this drop happened overnight from 0, not gradually, which is why people with far worse hearing than me don't have tinnitus. Theirs happened over a number of years and the brain adjusted. That is my theory.

I understand what you mean about having anxiety because of the ringing and the pressure. Because my scans are all clear, doctors are gaslighting me now and starting to tell me it is psychiatric. (Did I mention I have lost pretty much all respect for them and their profession). Elephant in the room, I have had 42 years of excellent psychological health right up until the headaches and tinnitus started. Which came first, chicken or egg? Because you are male, you might not get diagnosed with 'sad lady syndrome' quite as quickly as us women do when we have unexplained symptoms outside their textbooks. I think we got locked up with 'hysteria' back in the day.

How are you going day to day? Are you still managing to do your humanitarian work?

 

[Tweedly]

Hey @AliasM,

Yeah the link between migraines and tinnitus is not something do be dismissed. There's lots of research and literature that connects the two. Unfortunately, migraines are just as much not understood as tinnitus. So, two for the price of one...

I had two hearing tests done, with a month in between. I was curious about the second one as I had a lot of pressure attacks and electrical sensations before it. Both turned out fine, the second one was even a little better than the first one. Of course you have to take into account they only measure up to 8 kHz and cannot find any hidden hearing loss.

About the mental part of all this, I am definitely not working right now. I do want to take my life back eventually. But this episode in life is HUGE. Having tinnitus is scary, having constant 24/7 pressure issues is scary... I am going to take it slow. Try to keep the dot on the horizon, but don't ignore the trauma happening right now.

So I am looking to my friends and family, to my colleagues, seeking professional help and calming meds when I need them.

Hoping for a better future. I spoke with a social worker today who has tinnitus herself for 10 years now. She completely habituated. I asked her if her quality of life is the same as before her onset. She said she wouldn't lie, it is not. But she said she lives a happy life.

I believe that's the perspective we should use as the dot on the horizon. Being happy and having meaning in life is a better way of measuring life than "quality" of life.

 

[Tweedly]

To put it in one sentence: I am afraid I am dying... not now, but maybe in a year's time or so.

My medical situation: migraines from a young age onwards. Worsening in the last decade. More and more accompanied by pressure in my head. Now the pressure has developed into a 24/7 present thing. That's how I first got tinnitus.

It also seems to continue to damage my ears. Because it can intensify in waves and then every time slowly the tinnitus gets louder or develops new tones. Ear fullness and tubes not opening are also a 24/7 thing now.

The pressure is also steadily increasing. Doctors did all the possible tests but can find nothing. I am afraid this will start to affect other areas of the brain at some point.

So I am looking here for similar stories of people to give me some hope...

 

[Tweedly]

Update:

I started the Amitriptyline about a week ago, because the pressure attacks kept on coming and every attack makes the tinnitus permanently worse. Apart from that the pressure attacks also seem to affect my eyes (light flashes, increase in floaters). So I didn't really feel I had much to lose.

Today I again have a huge attack (feels like it's inside my head more than in my forehead), with again an increase in tinnitus that seems to be permanent.

I called the hospital. But they just advise me to keep taking the meds, since the scans were all clear. Kind of at a loss what else to do, no idea where this will end...

 

[AliasM]

How are you going on the Amitriptyline? I was prescribed 10 mg to eventually increase up to 25 mg. I am not even tolerating 10 mg so I have been cutting 1 tablet in half. I didn't take it at all last night because I don't want to be taking these drugs. At the same time if I don't, the headaches could make things a lot worse given this is what I suspect started it. I don't know. I am also on Propranalol.

We are very similar in onset, symptom and time line. Although my tinnitus came and went through December, I start the clock from from the 29th when it became 24/7. What date did yours start?

Have you had a lumbar puncture? I had this done as they were trying to determine if high or low pressure (IIH or spinal fluid leak) was responsible for the pressure.

 

[Tweedly]

How are you going on the Amitriptyline?

Well, I am just a little over a week on the way. The neurologist said it takes about 6 to 8 weeks to start taking effect. I do think it helps me with sleep a little though.

What date did yours start?

I have had migraines since I was 10. Late November the pattern changed and after a flight it turned into a 24/7 pressure thing plus the tinnitus.

Have you had a lumbar puncture?

No, chances of it being intracranial hypertension were close to zero, according to the neurologist.

I did find some interesting research though:

Cochlear Migraine: A Possible Cause of Hearing Loss and Tinnitus

It talks about migraines without (or with) headaches that target the cochlea and create vasospasms of the arteries in the inner ear, damaging the hair cells as a result.

I shared it with my neurologist, who said she never heard about it before. It's not an official diagnosis (yet) unfortunately.

Which would seem that if any treatment would help, it would be the traditional treatments for chronic migraines, like the Amitriptyline and Beta Blockers (like you've been prescribed as well).

Best stick with it and hope for the best.

 

[Tweedly]

Just to update:

Whatever is causing the pressure in my head is affecting or affected my eyes as well.

When the ringing started, I also experienced visual snow, flashes and a sudden increase of floaters.

I went to an eye doctor and my retina in both my eyes turned out to have tears in them. Both eyes at the same time apparently is extremely rare. They performed emergency laser surgery to prevent the retina coming loose.

 

[Novachrono]

Just to update:

Whatever is causing the pressure in my head is affecting or affected my eyes as well.

When the ringing started, I also experienced visual snow, flashes and a sudden increase of floaters.

I went to an eye doctor and my retina in both my eyes turned out to have tears in them. Both eyes at the same time apparently is extremely rare. They performed emergency laser surgery to prevent the retina coming loose.

Do you still have visual snow?