New to Regular and Pulsatile Tinnitus + Many Other Symptoms — Lost on What to Do

[NYCGuy]

Hi

This is going to be a long post but it has been a long journey for me and still a lot to go through.

The first thing I notice few months ago was my neck, I was going through a lot of stress plus I work in IT, so my posture may not be the best for the past few years and then one night I came home and notice Pulsatile Tinnitus on my right side of my head and was taught, using white noise etc to sleep and reading a lot about it and that put my stress over the edge.

One night I saw somebody saying doing jaw movement help with the pulsatile tinnitus and it was a mistake, I moved my jaw forward and my tinnitus started on the left side opposite to where my pulsatile tinnitus was. This new Tinnitus is so loud that I don't hear my pulsatile any longer and that one was loud already, so keep that in mind.

All the symptoms I had and still have.

1. Clogged ears (both ears)
2. Nose clogged (both sides)
   
3. Clicking when I swallow or similar
4. Clicking of the jaw
5. Neck pain
6. Shoulder pain
7. Headaches but mostly if something touches my head, a pillow, my headrest or even headphones I start with headaches and my TMJ specialist thought I have Occipital Neuralgia
8. Ear pain that lasts for a few seconds and can be any of the both
9. Pulsatile tinnitus on the right ear and regular tinnitus on the left and I think light tinnitus on the right
10. Jaws feel tense and sore, this got better after sleeping with an Orthopedic pillow and using Melatonin and Magnesium. I don't feel tense at all but I still have the jaw clicking. The jaw stuff is the only thing that got better

This is where my journey started.

ENT doctors:

Going to one ENT who told me it was nothing and that even he had tinnitus and no big deal and went home. Going to another ENT was better and did some tests and didn't find anything wrong with my ears. I did MRA/MRV for my pulsatile tinnitus and they didn't find anything (what a torture for 3 hours MRI with that loud noise, oh my god). I did a week of steroids and that helped with all the symptoms of TMJ, ears clogged, nose clogged etc but tinnitus was lower but not gone and the neck still hurt.

As you know, the ENT told me go home and nothing else to do and hope times help me.

TMJ specialist:

I also went to a TMJ specialist, he saw that my jaw was not very aligned, had a jaw clicking but I had used my mouth guard for 10 years already and he didn't see that I had that bad damage and he thought physical therapy was enough and trying Magnesium, Ashwagandha and similar to help me with that but he didn't think splint or Botox will be much help. He did mention that my headache symptoms seem like I have Occipital Neuralgia and believe it or not, I just read online that this can cause Tinnitus so I will give it a shot with a specialist.

Audiologist:

He did a hearing test and found hearing loss only at the 2 kHz at 35 dB on the left ear but then everything else was normal and the weird thing he said is that when he did the Eustachian tube testing I complain the noise was too loud and it was exact at the 2 kHz so he said that didn't make any sense, how is possible that the noise that bother me the most was the frequency I have hearing loss? He said, never saw anything like it and he said 2 kHz can't be caused by loud noises or anything. He said that hearing loss is forever and nothing to do, the only thing I can hope for is a miracle and that doesn't happen lol.

One note about the ENT and Audiologist, they don't know anything about tinnitus and they are very negative and they think tinnitus is nothing and is not severe or anything.

Spine specialist:

Same thing as the ENT, they are useless, they don't care or listen to anything you say, they only said to do physical therapy for a few months and then we see. I went to see it due to my neck issues that I had even before Tinnitus and other symptoms started it and I still have neck problems.

One thing that help sleeping with orthopedic pillow, at least my neck pain is better when I wake up but start having pain as the day goes on.

Allergist:

I saw an allergist specialist and did some tests and nothing came up, I don't think I will ever see skin reaction when doing a test because my symptoms are mostly nose and ear clogging, sneezing etc. She recommend Zyrtec-D, Singulair (Montelukast). PLEASE BE CAREFUL, I TOOK IT FOR 2 DAYS AND MY ANXIETY, DEPRESSION, NIGHTMARES AND TINNITUS WENT CRAZY, I GOT SCARED AND MY HEAD WENT INTO A VERY DARK PLACE AS DAY 1 OF MY TINNITUS SYMPTOMS AND I STOPPED TAKING IT. And also Neil-Med Sinus Rinse with Budesonide vial.

I will now try the Zyrtec-D and Neil-Med with RX Budesonide Vial and I hope these two will not affect my tinnitus.

Primary Care Physician:

Is the last one I saw and he sent me to do a hundred blood tests to make sure there is nothing else going on. He said to not lose hope, that he saw tons of people's tinnitus going away and not to believe the ENT that said it was forever. He said maybe try a few more weeks for Steroids to bring down any inflammation going on and give the body time to recover. He even mentioned giving me SSRI or similar to help with my sleeping and anxiety.

For Vitamins so far I'm taking the following.

Morning:

2 Lipo-Flavonoid, Magnesium Glycinate 200 mg, and Turmeric Curcumin extra strange.

Afternoon and night:

4 Lipo-Flavonoid, Ashwagandha and Boswellia.

3 days a week I also do Ginkgo Biloba. I tried Zinc but it always messes up my stomach. Every now and then I take Melatonin before bed time.

I don't know if it is all related or maybe I have different diseases that show up all at once but one thing I know, before I end up everything and give up, I will try every single thing out there that even has 1% of chances of success. I had a very difficult life from the day I was born and I don't know what happiness is but now that I'm finally buying my house and starting a family I can't give up so easily when I was close to know what happiness is.

Sorry for the long post but every doctor doesn't help me and says all this is not related but at the same time I think it is. How is it possible I have clogged ears because of the hearing loss, but that, and my nose being clogged happens on both ears/sides, while the tinnitus is on the left side?

If somebody has any tips or anything that can guide me what else I can try or do, it will be really helpful.

This forum has helped me a lot, thank you all for your hard work and keep fighting.

Thank you for taking the time to read my post.

All the best.

 

[billie48]

Welcome to the forum. You are not alone here as many of us share some of your symptoms if not all. I have gone through many of your symptoms like tinnitus, clogged ears, sinus issues, neck problems etc. I also have had dentist drill like high pitched tinnitus and severe hyperacusis plus recent SSHL, losing hearing on my left ear overnight causing balancing problems too while walking. It also brings on a new loud jet engine like roaring tinnitus plus many other nasty symptoms. So I understand your challenges and sufferings and have deep empathy.

BTW, your ENTs are civil compared to mine who said "the only way I can stop your ringing is to shoot you!". Gosh!!!

I hope your condition will improve. For brevity I invite you to check out my success story "From Darkness to Light..." in which I share many helpful strategies to help me cope, even with the latest SSHL episode. Hang in there and please take care. God bless.

 

[NYCGuy]

I forgot to mention that I can increase my tinnitus sound by chewing, moving my neck or opening my mouth.

 

[billie48]

I forgot to mention that I can increase my tinnitus sound by chewing, moving my neck or opening my mouth.

That shows that your tinnitus may be somatic and may relate to TMJ or vascular issue. Just a speculation. Best to let the doctors check things out.

 

[NYCGuy]

I started having neck problems a few months back with nose and ear clogged and then pulsatile tinnitus showed up in my right ear and that brought more stress to my already stressful life because pulsatile tinnitus most of the time can be something dangerous in the brain. So I started the process of MRA/MRV etc to investigate it more.

Watching YouTube videos somebody mentioned doing a jaw movement and that helps with pulsatile tinnitus. WHAT A BIG MISTAKE! As soon I moved my jaw forward, the tinnitus showed up in my left ear, along with what I think is quiet tinnitus in my right ear, but that is difficult to know because I have a very loud pulsatile tinnitus in my right ear.

The symptoms are neck pain, TMJ is tense, ear clogged, nose clogged, ear pain every now and then, loud hissing tinnitus in the left ear and pulsatile tinnitus in the right ear.

I saw several ENTs and they found I have 35 dB of hearing loss on the 2 kHz frequency, but the strange thing is they said they have no idea why this is the case. It is not noise induced and the doctor thinks it is not Meniere's disease. I only had one vertigo event but I think it was due to my neck massages.

They said hearing loss never gets better, only worse and there is no hope. This started two month and a half ago.

Why may I have this frequency hearing loss? Due to genetics or bad luck? I have no hope of tinnitus going away?

Thank you so much for your help!

 

[Russell Grimes]

Have your symptoms resolved? I just joined the forum and posted today. My symptoms sound identical to your symptoms:

• Loud click when swallowing
• Pulsatile tinnitus in right ear that gets worse with movement (crescendo)
• Intermittent non-pulsatile ringing in left ear
• Occasional neck stiffness and cervical spine soreness
• Pain in left ear when putting myself in certain positions.

Interestingly, your last post on January 5 is the day my symptoms started.

 

[NYCGuy]

Have your symptoms resolved? I just joined the forum and posted today. My symptoms sound identical to your symptoms:

• Loud click when swallowing
• Pulsatile tinnitus in right ear that gets worse with movement (crescendo)
• Intermittent non-pulsatile ringing in left ear
• Occasional neck stiffness and cervical spine soreness
• Pain in left ear when putting myself in certain positions.

Interestingly, your last post on January 5 is the day my symptoms started.

No, I think it is even louder than the regular tinnitus. My tinnitus has been so loud that I can't even hear the pulsatile tinnitus but somehow habitation has kicked in and I'm living a normal life.

At night or during part of the day I hear it but I got to the point I don't fear it or fight it, so my mind seems to consider it as background noise and I don't pay attention to it.

The power of the mind has totally surprised me to be honest, I was at the edge of ending it all to be honest but here I'm still fighting and hoping someday there will be a cure.

I have also started being in quiet for at least an hour or two per day, not fighting the sound but learning to be a friend with it and losing the fear for it. Whereas before, when I was nervous, I got in a panic mode which made things even worse.

 

[NYCGuy]

Hi all,

I have been on Tinitus Talk for some time but my case got a lot worse from when I joined with simple pulsatile tinnitus and tinnitus in one one ear.

I will try to not post a very long post but I want to give as many details as possible to see if anybody can help me, because I'm on the edge of making a very extreme decision and I promise myself to try everything before going that route and I think I have a few things to test out.

1 month in - I started with pulsatile tinnitus. Reading about it so much was a bad thing for my brain. It added more stress and anxiety to my life and I was at a very stressful time at the moment, so it was a bad combination.

I saw one of the best doctors for pulsatile tinnitus. He did all the tests and didn't find anything. He said 20% of cases don't have a cause of why they hear their heartbeat.

3 months in - One night I saw a YouTube video to help with tinnitus. I did the suggested jaw forward exercises and then heard a huge eeeeeee. It's the day when tinnitus started in my left ear and then progressed to a high-pitched, broken TV type of noise. How I regret doing that jaw exercise.

I saw tons of doctors but as you know, they didn't find much, just hearing loss from 2 kHz to 3 kHz at 30 dB levels. They say this was very strange because this doesn't happen due to noise exposure.

6 months in - Tinnitus started in my right ear; milder than the high-pitched tinnitus in the left ear, but now I got different noises at once and it was bad.

10 months in - Habituation happened and I was able to learn to live with the tinnitus and sleep with no masking etc.

13 months in - I experienced the onset of the famous MEM/TTTS, ear thumping with episodes lasting up to 12 hours. This was a nightmare, this was worse than tinnitus, because this was a physical feeling inside the ear plus it had no rhythm so it was impossible to habituate or get used to it. The thumps happened every 1, 3, 5 or 30 seconds.

15 months in - TTTS was getting worse. I saw the best doctor in the East Coast and he offered doing surgery, cutting both ear muscles but the chance of getting hyperacusis as a result freaked me out, because hyperacusis is the only thing I don't have and seeing people suffering from that scared me a lot.

16 months in - COVID-19 hit me and now I have a new BEEPPP tinnitus. Loud as hell. At night it's 10/10 plus I hear several other noises at once, so it is a nightmare.

18 months in - TTTS episodes stop. I had some thumping every now and then, but now every time I speak, I hear a cracking noise, very strange.

At the moment I'm struggling with severe bilateral multitonal tinnitus, crackling after speaking, thumping in the ear caused by muscles spasming in the middle ear and also crackling and popping when swallowing.

Medical condition - TMJ and neck; I think with NUCCA, Physical Therapy, Daily Massages and Splint I got it under control, no more pain etc. and had flare-ups but it is in a good space now.

I have no idea what is going on. Maybe the TMJ destroyed my ears, or what the hell happened. I have tried all types of vitamins etc. and nothing helps.

If anybody has any tips or recommendations, please share. I'm totally desperate and I keep getting worse and worse. All the doctors are at a loss, because it makes no sense to have some many strange conditions at once. Most of the time patients have one of the conditions but not all of them at once.

I also tried to find a good doctor in the Tri-state area but didn't find one yet.

Thank you for taking the time to read my post.

Best,
Daniel

 

[billie48]

I hope you can try to look at the positive things that have happened over time so far. You have shown that habituation is possible with the power of the mind. It happens for me too. I had initially ultra high pitched tinnitus. Followed by severe hyperacusis which lasted about a year. I had relentless anxiety and panic attacks due to decades of anxiety and panic disorder plus PTSD. I had to survive on benzos, antidepressants plus sleeping pills. Like you, dark thoughts were constantly flashing before my exhausted and stressed out mind. I never thought I could habituate to such nightmarish conditions. But I did habituate and it took me 3 years before I wrote my success story.

Then 2 years ago my left year suffered SSHL and lost all hearing. But on top of deafness, a new loud rumbling jet-engine like tinnitus hit me on the deaf ear. Then another period of severe hyperacusis followed which lasted for a year before fading. But this time I didn't panic like the first time. I just followed the strategies shared in my success story, such as keeping positive, CBT, mindfulness meditation, finding joy amidst the pain, living life abundantly to bury the suffering etc. I give my body enough time to heal and to habituate whatever conditions the tinnitus want to evolve. So I was spared the mental sufferings like the first time.

I am now habituated to both the jet-engine like tinnitus and the ultra high pitched dentist drill like tinnitus and the severely plugged and pressured sensations of the ears.

I live life as normal as i can, traveling, cruising, fishing, gardening, eating out with loved ones and friends etc. So never give up the hope things can improve for you too.

You have done similar improvement in the mental side of the battle too from reading your post. Another positive is that your conditions of pulsatile tinnitus, TMJ etc have improved. So never doubt your body's abilities to heal and improve if given the time and the positive attitude. Try practice finding joy amidst the pain and living life abundantly to bury the pain. Try new hobbies so the brain can be distracted from zooming on only tinnitus. Treat it as only a slice of your life; you have many other aspects of life to pursue or enjoy. If needed and you are anxious and depressed, try to get some medications prescribed to help you mentally. Use masking if your tinnitus bothers you. Also check out other options like TRT, CBT, upper cervical treatments, etc. If you are considering harming yourself, and if you have the means, you can check out even stem cells treatments and the experiences of those who have done this such as @attheedgeofscience. Try give it time and have hope.

All the best. Take good care. God bless your recovery.

 

[NYCGuy]

I hope you can try to look at the positive things that have happened over time so far. You have shown that habituation is possible with the power of the mind. It happens for me too. I had initially ultra high pitched tinnitus. Followed by severe hyperacusis which lasted about a year. I had relentless anxiety and panic attacks due to decades of anxiety and panic disorder plus PTSD. I had to survive on benzos, antidepressants plus sleeping pills. Like you, dark thoughts were constantly flashing before my exhausted and stressed out mind. I never thought I could habituate to such nightmarish conditions. But I did habituate and it took me 3 years before I wrote my success story.

Then 2 years ago my left year suffered SSHL and lost all hearing. But on top of deafness, a new loud rumbling jet-engine like tinnitus hit me on the deaf ear. Then another period of severe hyperacusis followed which lasted for a year before fading. But this time I didn't panic like the first time. I just followed the strategies shared in my success story, such as keeping positive, CBT, mindfulness meditation, finding joy amidst the pain, living life abundantly to bury the suffering etc. I give my body enough time to heal and to habituate whatever conditions the tinnitus want to evolve. So I was spared the mental sufferings like the first time.

I am now habituated to both the jet-engine like tinnitus and the ultra high pitched dentist drill like tinnitus and the severely plugged and pressured sensations of the ears.

I live life as normal as i can, traveling, cruising, fishing, gardening, eating out with loved ones and friends etc. So never give up the hope things can improve for you too.

You have done similar improvement in the mental side of the battle too from reading your post. Another positive is that your conditions of pulsatile tinnitus, TMJ etc have improved. So never doubt your body's abilities to heal and improve if given the time and the positive attitude. Try practice finding joy amidst the pain and living life abundantly to bury the pain. Try new hobbies so the brain can be distracted from zooming on only tinnitus. Treat it as only a slice of your life; you have many other aspects of life to pursue or enjoy. If needed and you are anxious and depressed, try to get some medications prescribed to help you mentally. Use masking if your tinnitus bothers you. Also check out other options like TRT, CBT, upper cervical treatments, etc. If you are considering harming yourself, and if you have the means, you can check out even stem cells treatments and the experiences of those who have done this such as @attheedgeofscience. Try give it time and have hope.

All the best. Take good care. God bless your recovery.

Thank you. The struggle is what medication is good for sleep and anxiety that won't do more harm than good. Many people report their tinnitus worsening from medications.

It's also difficult finding a doctor that can help me in NY or NJ. Every ENT has sent me home and wishing me good luck.

Thank you for your kind words Billie, I hope I have the mental strength that you have to go through this. The MEM and the new tone is very difficult for me to deal with at the moment.