Greetings from Some Alien Planet and the Loch Ness Monster I am Fighting

[Coyotesheaven]

Hi,

I am a 22-something post grad who is happily (sarcastically speaking) spending their life curled up at home away from job and further education thanks to some really bizarre malady that no neurologist or ear doctor can put a name to.
I have been sick for just over a year with the same complaints, but a few of my ear-related complaints began in early 2015 due to 3 loud noise exposures. I have also been battling depression for 1.5 years now. I do not know if there is a connection. To sum up my current complaints:

The Symptoms

A. I have some mysterious disease that seems to be vascular in nature or related to the fluids in my inner ear, which is affecting primarily my head, neck, and ears.

1. This hidden malady has caused or contributed to the development of basilar, otic, and vestibular migraines. I have no real genetic predisposition to migraines and never had them before August 2015, so they are likely caused by something else.

• These migraines have caused tinnitus, hyperacusis (which can be a very weird type which makes you feel like you are getting 'schocked' by loud noises), vertigo, dizziness, and fluctuating hearing loss which has slowly progressed in both the high and low frequencies. The hearing loss comes as tiny sudden losses that do or do not recover. I have tinnitus in the high frequencies that usually sounds like downed power lines. And recently, as I am starting to hear droning noises too; I have had diesel motor sounds and low pitched humming sounds.
  
• The migraines also do what most migraines do best, notably tingling, tremors, vibrating sensations, visual processing glitches, visual auras, spatial orientation glitches, head throbbing and head pressure (temple, sinus, skull base), eye pain, limb weakness, drunk feeling, etc.
  
• These migraines are triggered by sudden loud (but non-dangerous OSHA wise noises), pressure changes associated with earplug use and airplanes, doing anything that alters head blood pressure or intracranial pressure (bending over, coughing, sniffling hard, lifting something heavy, reaching too far for something, any kind of tension or exertion), moving my head and neck in certain ways, altering breathing through (gulping air in, getting anxious, laughing, crying, orthostatic stuff), running, smiling, and having too much fun.

2. Along with the migraines, I have recently been suffering from cold hands and feet (bad circulation), chills, fatigue, and occasionally heart palpitations if I am made even slightly anxious. I also have orthostatic hypotension-like symptoms, although my blood pressure is fine. Relatedly I struggle to catch my breath these days. I have been very inactive for the past 3 months, only getting in a miles worth of walking in 3 times a week or a little more, but it's still pretty weird for my age that I am acting 70 years old in terms of stamina. I also have crippling major depression, and previously panic disorder, that may or may not contribute to these symptoms.

3. Lastly, I suffer from very tight muscles in my head and neck, along with secondary TMJ problems, which I am sure are a risk factor for migraines. They are so tight that my cervical spine has been completely straightened. Not sure how they got there in the first place, as this developed rapidly over 3 months.

The Things the Docs Did for Me That Didn't Work and Didn't Show Anything

1. I have been on 3 different migraine meds: topomax, pamerol, and propanerol. Topomax was a poison to my body; it gave me tremors and seizure like experiences, dehydrated me, damaged my eyes, and likely caused my hearing loss in the low frequencies to worsen/start. Propanerol made my blood pressure drop dangerously low and made me sick with chills and more severe migraine attacks and nausea. And the pamerol made me fat. None of the meds, except possibly the topomax (only for loud noises), seemed to do anything to stop my migraines or protect me from triggers.

2. In terms of otological examinations,

• I have had about 10 audiograms done in the last 1.5 years. Most have stayed within normal limits, but some high frequencies are showing drops below the normal range now in both ears; I had a moderate high frequency drop in the right ear that fortunately recovered a year ago. Lows appear normal, but I am losing hearing below 250 hz, so not much help there.
• Nothing wrong with outer or middle ears. Repeat, nothing. Don't ask me that again.
• Auditory brain stem response was 'normal', so were my OAE's and my tympanograms.
  
• All balance testing was normal except for one test (because they tested me on the days when I *surprise* had no vertigo or migraines
  
• CT of temporal bones normal
• Never did an ecog test. Too loud!
  
• Some eustachian tube dysfunction because of tight muscles and secondary TMJ problems

3. In terms of other medical tests

• MRI of the brain and cervical spine all came back normal
• MRA of the brain and cervical spine all came back normal
• Test they use for seizures or epilepsy- came back fine!
• CT scan of the neck arteries-all good!
• Blood tests-No autoimmune antibodies, including those that get in the inner ear, found. Also no viruses, diseases noted. Everything came back negative. All vitamin levels and other stats are good and in normal range.
• If I can think of another test it came back normal too.

4. Results of Alternative Therapies

• All the supplements in the world have done effectively nothing for my symptoms
  
• Rigorously following the migraine diet has done nothing for my symptoms (and I eat damned healthy)
• Acupuncture, cranio-sacral therapy, and massage have all caused my migraines to be worse for a period of days/weeks and have worsened my hearing

So, that's the breakdown of what is currently going on with me and what my life has to offer.

Does anyone share this experience even remotely?

 

[gotyoubynuts]

Does anyone share this experience even remotely?

Do you think something could be wrong with your outer or middle ears?

 

[Sen]

27 here. i have tinnitus, hyperacusis and a ton of bizarre unexplained symptoms head/face symptoms including migraines that cause vertigo, similar to what you describe.

i haven't been investigated as thoroughly as you, but i suspect if i were they would have found just as little.

i don't have an explanation. the only thing thus far that has given me true symptomatic relief were benzodiazepines. maybe anxiety has more to this than we're willing to admit. maybe not.

 

[slipware]

Anxiety, the bane of most T sufferers. I think the main reason we are anxious is BECAUSE of the T, not vice versa. Also, I see the poster had a serious headache, that's how mine started, the worst headache I'd ever had (and I get a LOT), turns out it was the signs of a TIA. That's what caused my particular T journey, which has, to this day, more that 4 years on, never got better. It's only my perception of it that has improved slightly. I'm very far from habituated, but I no longer have sleepless nights about it, I just try my best to ignore it, and that is generally an impossible task. But I know it won't kill me. I'm on warfarin as the TIA was caused by an undiagnosed heart condition, and beta blockers, nothing more.
All I can say is you are not alone, we are all in some way prisoners inside our own particular T symptoms, we just have to accept it.

Out of interest, it's not only the noise that bothers me, it's the feeling of fullness in my ear. Does everybody get this?

 

[DDD]

@slipware yes I got fullness in my ears right now as I type this

 

[Coyotesheaven]

@slipware

Yes, anxiety is no fun. Unlike most people on this forum, most of my anxiety comes from hearing loss, and not T. My T is just like an annoying, but modest alarm; a warning signal that I am doing something my ears or body do not like. But I can understand how debilitating it can be for others to have an actual smoke alarm in their ears all the time.

A TIA does not sound like fun. I thought I had one too in my brain stem; limbs went weak on both sides,my speech got slurred, and I felt really drugged up and woozy, I had very loud pulsatile tinnitus, and the back of my neck was totally numb and nauseating to the touch. I think in retrospect it was just a basilar migraine, but it was still the only day in my 22 years of life when I thought I was going to die.

What kind of heart condition did you have (you don't have to share if it's private information)? Right now it turns out I am battling a chronic lyme infection, and there is some chance it has invaded my circulatory system. I also had heart problems when I was a young child (heart murmur) and bypass surgery when I was just born for heart failure. Some of my inner ear issues are definitely vascular related and could even be tied back to my heart function if I get that ambitious.

 

[Coyotesheaven]

@Sen

Anxiety and stress definitely make things worse. All of the adrenaline and cortisol inflicts damage on your body; no human was meant to be in a constant fight or flight state all the time, and the damage adds up, including in the ears. But stress need not be the only cause; it is just a highly potent contributor or a trigger.

I've experienced this firsthand as someone with GAD; all of my crying fits, all of my panic from loud noises or my triggers, all that stress has done an effective job of keeping me sick and keeping me from healing. That is why I still have the chronic lyme disease in my body. If it weren't for my stupid anxiety attacks 24/7 back in the day, I would be experiencing longer periods of remission.

Also concerning your migraines and other issues. If you have MAV then why haven't you ever been put on a migraine prevention medication by your doctor? Benzos aren't really the best help for migraines.

 

[Sen]

If you have MAV then why haven't you ever been put on a migraine prevention medication by your doctor? Benzos aren't really the best help for migraines.

I've never been diagnosed with MAV. I took benzos to mitigate other symptoms, not the headaches.

 

[slipware]

@Coyotesheaven

I have AF, undiagnosed st the time of the TIA.

 

[Coyotesheaven]

@slipware

What is AF?

 

[slipware]

Atrial fibrillation. A electrical heart defect, the main cause of stroke.

 

[Coyotesheaven]

@slipware

Oh, hmm. Maybe I will look into that. I had heart problems as a child (heart murmur, something wrong with one of my atria, heart failure due to too much blood pumping into some non-cancerous mass, some kind of bypass surgery). Last time I went to the cardiologist was when I was 7,8, and I seemed to be totally fine.

What happened during the stroke, btw? I think I may have had a basilar artery stroke once, but it may have been a basilar migraine which can strongly resemble a stroke.

 

[SilverSpiral]

What were the acoustic traumas?

 

[Coyotesheaven]

@SilverSpiral

A firecracker, an Imax theater, and a rave-like event. All three occurred even with hearing protection, even though it was not quite properly fitted each time.

If you go back in time though there was another event with a loudspeaker playing heavy bass in 2014. That produced some of the same symptoms (vertigo, hearing loss, nausea, headachesm tinnitus); I had a bit of permanent hearing loss and T, but I recovered only after 2 weeks and my hearing and ears were pretty resilient up until the firecracker 10 months later.

 

[Kazue]

Oh goodness. Poor you. That's a lot to go through. I can imagine the amount of stress and anxiety you're going through. I know you are sick of hearing this but continue to go on a diet. Improve your self health. Pamper yourself, your state of mind will thank you. This includes eating properly, exercising, and doing the things you love. There's a part of your ear that is in control of balance. This can cause migraines and vertigo if the inner ear "feels" that you're unbalance. Wanna test it out? Spin around in a circle and stop. In a few minutes, your brain will recalibrate and adapt. I imagine that airplanes and roller coasters are hell on earth for you.