So Lost — Help Needed

[november]

Hi everyone!

I am so lost and I could really use your help because I'm not sure how to proceed. I'm just going to briefly explain what has happened and I appreciate you so much if you take the time to read it:

In late October, I suffered a severe concussion where I fell backwards and I have suffered with neck and jaw pain ever since. I also have an impacted wisdom tooth that got infected and it spread to my cheek and neck. In mid December, I hit the back of my head against a wall and suffered with headaches/possibly new concussion for days. On December 25th, I was on a walk outside when someone lit a military grade firecracker about 10-15 meters away from me.

I had some fleeting tinnitus with the concussion, but I didn't put much thought to it because my other symptoms felt more severe. Two days after the firecracker incident, I started noticing my tinnitus 'helicopter sounds' was on the rise even though I had no ear fullness. I went to the doctor about two weeks later who insisted on doing microsuction (I had no idea this could potentially cause more harm), and after that my tinnitus exploded. My most recent audiogram was completely normal, although I know it's not worth much. Here are my sounds:

Right ear: tinnitus that changes frequencies (from low roar to ultra high pitch) and patterns (buzzing, flickering, light saber, scream) all the time, burning ear pain, hyperacusis, fluid sensation.

Left ear: intermittent, violent pulsatile tinnitus, morse code that comes and goes.

Episodes of vertigo, throwing up and bad migraines. Fluctuating hearing, electrical zaps down my neck, in my jaw, above eyebrows. Pain behind eyes. Feeling of extreme pressure in my head.

I have tried to remain as humanely calm as possible through this, but I feel so lost because I am in so much pain. The doctors are writing it off as stress, and the ENTs have only aggravated my symptoms with their tympanometry and hearing tests and microsuction. My neurologist gave me a lecture on "mental pain" and was very patronizing. The last ENT I saw laughed me in my face when I told him I felt my jaw was out of joint and told me: "Well, how about you stop doing that?"

Where do you think I should go from here? I do not understand my symptoms at all and have considered everything from post concussion syndrome, to acoustic trauma, to Meniere's and so on. Any advice would be so, so appreciated.

All the best,

A very lost girl

 

[Hazel]

Ugh, so sorry to hear about this! It sounds like the doctors you've seen have not taken you seriously. If it was just the tinnitus, I could (almost) understand, since they can't do much about that anyway, but you have other related issues that need to be addressed. I've never had a concussion, but that alone seems like sufficient reason for more medical follow-up.

Do you have a good/understanding GP? If so, he/she should really be helping you out here and send you to the right places for help.

 

[jimH]

My neurologist gave me a lecture on "mental pain" and was very patronizing. The last ENT I saw laughed me in my face when I told him I felt my jaw was out of joint and told me: "Well, how about you stop doing that?"

I am so very sorry that you were treated by them in such a disrespectful and condescending manner!
To be lectured by one and laughed at by the other? They're a disgrace to their profession!

You might want to consider seeing another neurologist. Sometimes getting a second opinion really does pay off.

 

[november]

Thank you so much for your kind responses, that truly means the world to me. I will definitely follow all your suggestions. Best, Christine

 

[jjflyman]

Hi everyone!

I am so lost and I could really use your help because I'm not sure how to proceed. I'm just going to briefly explain what has happened and I appreciate you so much if you take the time to read it:

In late October, I suffered a severe concussion where I fell backwards and I have suffered with neck and jaw pain ever since. I also have an impacted wisdom tooth that got infected and it spread to my cheek and neck. In mid December, I hit the back of my head against a wall and suffered with headaches/possibly new concussion for days. On December 25th, I was on a walk outside when someone lit a military grade firecracker about 10-15 meters away from me.

I had some fleeting tinnitus with the concussion, but I didn't put much thought to it because my other symptoms felt more severe. Two days after the firecracker incident, I started noticing my tinnitus 'helicopter sounds' was on the rise even though I had no ear fullness. I went to the doctor about two weeks later who insisted on doing microsuction (I had no idea this could potentially cause more harm), and after that my tinnitus exploded. My most recent audiogram was completely normal, although I know it's not worth much. Here are my sounds:

Right ear: tinnitus that changes frequencies (from low roar to ultra high pitch) and patterns (buzzing, flickering, light saber, scream) all the time, burning ear pain, hyperacusis, fluid sensation.

Left ear: intermittent, violent pulsatile tinnitus, morse code that comes and goes.

Episodes of vertigo, throwing up and bad migraines. Fluctuating hearing, electrical zaps down my neck, in my jaw, above eyebrows. Pain behind eyes. Feeling of extreme pressure in my head.

I have tried to remain as humanely calm as possible through this, but I feel so lost because I am in so much pain. The doctors are writing it off as stress, and the ENTs have only aggravated my symptoms with their tympanometry and hearing tests and microsuction. My neurologist gave me a lecture on "mental pain" and was very patronizing. The last ENT I saw laughed me in my face when I told him I felt my jaw was out of joint and told me: "Well, how about you stop doing that?"

Where do you think I should go from here? I do not understand my symptoms at all and have considered everything from post concussion syndrome, to acoustic trauma, to Meniere's and so on. Any advice would be so, so appreciated.

All the best,

A very lost girl

I'm so sorry you are having so many problems right now. I (we here) know how hard T is at first, and how scary.
I'm no doctor, but it seems to me you have had your concussion checked out, and I *think* the only treatment for a concision at this point is time. It also seems to me that most (if not all) of the T issues cam from the loud explosion that went off next to you. The only treatment for that is time. It will probably take many months for your T to fade, but there is a good chance you will recover. Lots of people who have T from acoustic trauma (fireworks, gunshot, concert, loud power equipment, ect) make a full recovery, but it can take up to 2 years or more.
I recovered 12 years ago from screaming loud T from acoustic trauma, and am about 17 month in a second bout with T from a concert, and have recovered 80-90%, so it does happen.
Try to protect your ears from loud noise, avoid headphones at all costs, and don't let your ENT do anymore procedure's with you ears.

 

[november]

@jjflyman Thank you so, so much for your response, that's such comforting advice. I think I've been in a downward spiral because the tinnitus has caused me so much insomnia, that in turn aggravated my concussion. The pulsatile tinnitus might just be stress migraines? I will try to calm my central nervous system by putting my faith in your response. Hugs, and thank you again!

 

[Bill Bauer]

Check out the thread below where I summarize everything (27 tips) I learned about managing tinnitus after reading the posts on this forum for the past year.
https://www.tinnitustalk.com/thread...eone-else-who-has-tinnitus.26850/#post-307822

 

[SeaJay]

Do you have a good/understanding GP? If so, he/she should really be helping you out here and send you to the right places for help.

A great suggestion. I had a great GP who worked with me until he passed away. He found my tinnitus intriguing from a medical viewpoint and was very kind and helpful. Among other things, his caring and understanding and willingness to listen to me was a big help in itself. A good bedside manner always makes things better. It was a pleasure to be treated by him.

No medical providers should be patronizing or dismissive with you. I have dealt with those attitudes from physicians myself. It's unprofessional to say the least.

Though Oregon Health & Science University's tinnitus clinic has closed, they are a many faceted medical center and they may be able to give you guidance and possibly give direction to providers in your area that are sympathetic to your plight.

And the American Tinnitus Association is also a good resource that has lists of providers that specialize in tinnitus.

I hope things get better for you soon. Often it just takes time for the healing to begin.

 

[devonlee]

@november

It sounds like you have a common problem of a lot of us here. You're not really sure where one problem ends and another begins. Did the concussion cause tinnitus which caused migraines which caused stress or do the pieces fit in to the puzzle in a different order? Who knows. But for multiple 'medical professionals' to treat you like that is not okay at all.

I agree with seeing a neurologist or a concussion specialist if you have access to someone of the sort. I personally think your primary issue is the concussion, like others have said, that may just take time to heal. You may also, unfortunately, always have permanent issues from it.

If you can get someone who will look at your issues in a holistic manor that would also be beneficial. All of these issues are related. You can't have these specialists trying to treat one issue while ignoring the fact that the others exist.

Lastly, please don't take any offence to this if it is an unfair assumption, but I find it concerning that you suffered a concussion from a fall and then a few months later hit your head off a wall. If you're in an abusive environment, please seek help.

Best of luck.

 

[november]

@devonlee Thank you so much for all of your advice. I am not in any sort of abusive environment, I just hit my head against the wall when I was about to lie down in bed! Thank you for your concerns though!

 

[november]

@SeaJay Thank you so much! I'm actually European, but I did live in Portland as a teenager for quite a while. Maybe I will look into OHSU if I can't get any further from here! Hugs.

 

[november]

All of the support in this forum is really wonderful.

 

[Greg Sacramento]

@november You may be having some acoustic sound disorder - ASD causing your symptoms mentioned. This relates to your concussion and noise exposure. When hyperacusis is also present with your other symptoms from concussion and noise exposure, then the chance for ASD is 75%. Include any relation to the jaw/teeth and it's 90-95%. Your tenor tympani could also be reacting.

The good news is that any ASD problems and tenor tympani interaction should go away within months.
This would be "Episodes of vertigo, throwing up and bad migraines. Fluctuating hearing, electrical zaps down my neck, in my jaw, above eyebrows. Pain behind eyes. Feeling of extreme pressure in my head."

Your hyperacusis should also settle down, but this, tinnitus and any jaw and neck problems caused by concussion may need therapy, but your tinnitus may also settle down on it's own.

I had all your symptoms from whiplash. I play a rain CD just above whisper levels about ten feet from me at night and often during the day. You can use a recorder or buy a small inexpensive device.

Trying to keep your reactions/emotions under at least some control.

Using a folded or small round pillow under your neck for support may help. If your neck hurts at all after your other symptoms resolve than a X ray of neck would be a good idea and muscle and nerve examination may be needed for your neck. Some conservative neck therapy may be needed if exams show problems. Be careful with extreme head and neck movements especially in forward motions just to be safe for now.

What may help at stressful times is very light hand touching movements down the back of your head continuing down your neck and into your shoulders If you have a MRI of your head and neck, wear both ear plugs and noise blocking headphones. With hyperacusis, be careful wearing ear protection for hours as it may lower your auditory threshold more. Do wear ear protection when loud noise is present or which may come about. It may be best to avoid hearing tests beyond just tone testing until your ears settle down. A warm not very hot towel placed to the back of your head and neck may help.

There's lots of ideas here from members for coping.

 

[november]

Thank you so much everyone. And @Greg Sacramento, thank you so much for your response, that means the world. The rain sound, careful movements, and hot towel advice has helped so much already.

I'm really glad to report back (maybe this can be of comfort to some of you as well?) that things have improved slowly, but steadily. The pulsatile tinnitus that would fill my whole head is just a faint thumping now, and the morse code in my left ear is like a soft murmur far away. My right ear is still being difficult, but I found a much better doctor who ordered scans that showed the cartilage is almost gone in my jaw, and my C1 and C2 in the spine are 'bent' from the injuries. I have twitches in my right side all the way from jaw to eyelids, but my tinnitus on the right side seems to be somewhat synchronized with this twitching. I suppose I'll never know if it's ASD/injury to the ear and tensor tympani twitching, or just the jaw joint/neck and some very unhappy nerves, or a combination of the two... but time is a great healer. It all started December 27th and quickly rose to a 11/10 (sometimes, I could barely comprehend speech), and now, even without the TMJ and PT I will need to go through, it's never more than a 4-5/10, and the other symptoms are less and less frequent. For some brief intervals during the day, it can even be a 1/10. I suppose the body really wants to heal. I would really recommend everyone to see a TMJ specialist, even if you think there's nothing to be found there. Even a simple thing, like your tongue touching your palate with your head in resting position, could indicate tension, or a TMJ issue. Every little thing I've done has also helped a little bit in the end. Keep on fighting!

All the best, Christine

 

[november]

My TMJ doctor actually co-authored a study where they treated 11 people who had tinnitus due to unknown causes. 4 didn't improve, 5 said they had very noticeable improvement, 7 had extreme improvement, and 2 were symptom free once the treatment ended. He believes the n. trigeminus, plexus cervicalis, m.pterygoideus lateralis, discus temporo mandibularis, capitulum mandibularis, and capitulum mallei (oh boy, I hope I got this right!) is as likely as an inner ear disorder to be the culprit, or to severely aggravate any pre-existing tinnitus. I was so convinced it was the noise exposure and just wanted to lie down and never get back up again, but then the scans showed extensive joint damage I could have never guessed (that can be worked on!). I sincerely hope you are all getting the help you deserve. I am rooting for each and every one of you.

On a site note: some really simple things that helped me tremendously so far was @Greg Sacramento's recommendations, taking curcumin and evening primrose oil for joint inflammation, rooibos tea that supposedly drains excess fluid, and alternating btw. hot/cold showers/gentle stretches/this incredibly silly acupressure mat to get lots of blood to the head. It did these things every day for a week, and after that, it dropped from 9/10 to 1-2/10 for 8 consecutive days. It's louder again because I've been bedridden with concussion migraines, but if any of these things could help any of you just a tiny bit too, I thought I would mention it!

I was also scouting for some success stories in my family to hopefully cheer someone here up a bit. My dad's sister had noise induced tinnitus that went overnight after 5 months, and her husband (my uncle)'s brother had tinnitus after a gun shot during a hunting trip that went away completely too.

Please let me know if there's anything I can do to help any of you.

 

[Greg Sacramento]

For most with physical tinnitus that have a detailed account, the cause can be easy to see and a treatment plan established. For those with whiplash, related trauma often improves. If nothing helps, then whiplash caused many problems or some difficult problems to treat. Very few have serious brain injury with physical tinnitus. Very few have heart disease. If one has heart disease along with whiplash like myself, then there's more than just trying to swim against the current. There's also big waves that will exhaust you. In the last year, I have only seen a very very small amount of those with physical T where I felt that treatment may be complex to treat.

 

[november]

@Greg Sacramento I'm so sorry to hear that you are fighting multiple battles. It's impressive that you're still taking the time to give advice to so many people on this forum (I've read through quite a few of your posts because you seem very knowledgeable on the whole topic of somatic tinnitus). Though it is only minor compared to actual heart disease, I had heart arrhythmia when I was young and had to sit up when I slept for a few years, never felt well. I truly believe you when you say that sometimes, it is like being bombarded with big waves, because suffering whiplash and heart disease simultaneously must be hard. Are you still able to get some rest and some times where you don't think as much about it? Sometimes, it is good to remember (at least it helps me right now) that our bodies are more than our hearts, ears, necks, etc. and everything else that is not well at the time being, and that they are also capable of feeling positive sensations, like warmth and love. I so hope you manage to swim against the current even if the river is long and there's a long way to go. Hugs.

 

[Greg Sacramento]

@november Thanks you for your caring and warming thoughts. I also wish you the best.

 

[Greg Sacramento]

@november How are you managing now? How is your family doing? I hope that you are seeing continued improvement.

For me, I know that my C1 and C2 caused my TMJ, but I recently finally found out a suspect to what is causing my T. It's my deeper cervical veins and vertebral arteries. I recently discussed this under the New University Michigan thread with feeling that muscle therapy of Susan Shore may help.

Thanks for your thoughts. You are a very nice person.

 

[Starfish90]

Hi everyone!

I am so lost and I could really use your help because I'm not sure how to proceed. I'm just going to briefly explain what has happened and I appreciate you so much if you take the time to read it:

In late October, I suffered a severe concussion where I fell backwards and I have suffered with neck and jaw pain ever since. I also have an impacted wisdom tooth that got infected and it spread to my cheek and neck. In mid December, I hit the back of my head against a wall and suffered with headaches/possibly new concussion for days. On December 25th, I was on a walk outside when someone lit a military grade firecracker about 10-15 meters away from me.

I had some fleeting tinnitus with the concussion, but I didn't put much thought to it because my other symptoms felt more severe. Two days after the firecracker incident, I started noticing my tinnitus 'helicopter sounds' was on the rise even though I had no ear fullness. I went to the doctor about two weeks later who insisted on doing microsuction (I had no idea this could potentially cause more harm), and after that my tinnitus exploded. My most recent audiogram was completely normal, although I know it's not worth much. Here are my sounds:

Right ear: tinnitus that changes frequencies (from low roar to ultra high pitch) and patterns (buzzing, flickering, light saber, scream) all the time, burning ear pain, hyperacusis, fluid sensation.

Left ear: intermittent, violent pulsatile tinnitus, morse code that comes and goes.

Episodes of vertigo, throwing up and bad migraines. Fluctuating hearing, electrical zaps down my neck, in my jaw, above eyebrows. Pain behind eyes. Feeling of extreme pressure in my head.

I have tried to remain as humanely calm as possible through this, but I feel so lost because I am in so much pain. The doctors are writing it off as stress, and the ENTs have only aggravated my symptoms with their tympanometry and hearing tests and microsuction. My neurologist gave me a lecture on "mental pain" and was very patronizing. The last ENT I saw laughed me in my face when I told him I felt my jaw was out of joint and told me: "Well, how about you stop doing that?"

Where do you think I should go from here? I do not understand my symptoms at all and have considered everything from post concussion syndrome, to acoustic trauma, to Meniere's and so on. Any advice would be so, so appreciated.

All the best,

A very lost girl