My Tinnitus History. Sorry It’s So Long.

My tinnitus started at 4am on March 3rd. I was awakened with deafening jackhammering which I thought was coming from the courtyard outside our home. It wasn’t, it was all in my head. And so begins my journey. I went to a doctor later that day (my our physician wasn’t available and saw someone who really didn’t care, the first of many!). Doctor referred me to my first ENT. A few days later I was having my first tinnitus hearing test. I have hearing loss. I can’t believe it. I can hear everything. Basically said it will either resolve itself or become chronic. He prescribed antibiotics then prednisone which didn’t help. My tinnitus became worse. No one addressed the extreme pain on the left side of my head, temple & ear. Two weeks later I was in with my GP. She referred me to my 2nd ENT. He offered more information than the previous ENT. Another hearing test this time with no hearing loss. Given the advice to just learn to deal with it. There was nothing to do to cure tinnitus. No recommended treatments or suggestions on how to ‘deal’ with it.

I went to my acupuncturist who tried to help. She had me taking Chinese supplements. She got the ringing to stop a few times but as soon as I woke up in the morning the ringing was back. How I enjoy those quiet evenings! I lost 24lbs in 3 months! No one knew why I was so nauseous all the time. I found a doctor at Weill Cornell, NYC who specializes in pulsatile tinnitus and made an appointment. I didn't know what type of tinnitus I had. Before I could get into the specialist I needed to see their ENT. I got in within a week! I was so excited. Dr K ordered an MRI which was done a week later. A few days later I received the news I had a stroke! I was 58 and very healthy before tinnitus so this didn’t make sense. Got in with pulsatile dr and he ordered more tests. An MRA & MRV was scheduled a week later (it is now early June). After those tests I requested a copy of all three tests. I brought them to my physician friend who showed the scans to all the radiologists/neurologists at his hospital. Results? No sign of stroke! A brain cell died just before the MRI. All the stress of thinking I had a stroke sent my tinnitus into overdrive. The good news, a clean scan. The bad news? I was not a candidate for pulsatile tinnitus treatment. I was referred to an audiologist at Weill Cornell who was wonderful. Lucky me! The weight-loss and anxiety symptoms are finally answered. My brain was associating pain with tinnitus so as I whirled & buzzed, I vomited. The lack of sound caused anxiety. It was recommended I try Tinnitus Retraining Therapy. These are hearing aids that play white noise masking the sound in my head. (I started TRT on July 5th.) If you have tinnitus, silence is your enemy. It was also recommended I read ‘Tinnitus Retraining Therapy’ implementing the neurophysiological model by Pearl J Jastreboff & Jonathan W P Hazell. Habituation is a process. It can take 3 months or it can take a year or more. Patience is essential with tinnitus.

Next up, in June I saw another neurologist, Dr F. He felt the tinnitus was the result of a virus, so I finally had an answer to what was going on. The pain was resolved with a nerve block (first block lasted 6 days, the second 9 days). Dr F recommended physical therapy to help with neck & shoulder tightness which could be effecting the tinnitus. I saw a chiropractor & my acupuncturist. I was overloading on my quest for a cure! Everyday was filled with one or two of my specialists! And I was spending a small fortune on treatments. I was starting to eat & feel stronger. Not anywhere near my old self but at least I was getting out of the house & enjoying some moments with my husband & family. In July a referral to a Chinese doctor who has had success treating patients suffering with tinnitus. I quit my PT and chiropractor (no new exercises were being added, no relief from symptoms & didn’t need adjustments twice a week). I do my exercises twice a day and workout almost daily. I don't drink and I eat a healthy, balanced diet. I do cheat occasionally. We need some guilty pleasures.

Dr C knows his stuff. The sessions are at least two hours twice a week. He has lowered the volume of my tinnitus using acupuncture with electrical stimulation, acupressure, massage & stretches. He has eliminated the pain I experience in my head & ear. It takes time. Remember patience?!

The end of August I had an opportunity to use an injectable (Botox) to help with the headache & pain. I currently don’t have pain so I’ll meet with my neurologist to discuss ‘next steps’ to be prepared in case the pain returns. Also in August I started a new therapy called HBOT. Hyperbaric Oxygen Therapy. It was slated to help lower the tinnitus noise level and clear the brain fog. It did help relieve the brain fog & lowered my noise level. I was down to a 3 from a 9! I have 4 (out of 10) sessions in HBOT. I feel I’m making progress.

I’m back at Weill Cornell on August 28th and my audiologist is happy with my progress. I’m feeling good, too skinny but the weight will come back eventually. I can have discussions without my mind wandering back to the tinnitus. My masker volume is lowered so it doesn’t get in the way of my brain. I’m finally feeling positive this thing will be behind me soon.

August 29th, my hell. Neurologist talked me into getting Botox injection for non-existent pain. I’m madder than ever. Mostly at myself for allowing the injection. After the first prick I knew it was wrong. Two injections in the mastoid process, two in my shoulders. The tinnitus revved to a 10! I’m so upset. I think it will be out of my system in 3 months. I can deal with the tinnitus. Two days later my throat & neck are paralyzed. I can’t swallow. I’m on liquids & afraid I’ll lose more weight. The neurologist returns my call 4 days later exclaiming ‘this is great news. It means your muscles are responding. Next time we won’t use as much Botox!’ Next time? No next time. His advice for swallowing? ‘Sit up straight & tuck your chin in!’

It’s now October 20th and I can finally swallow without choking. I’ve lost another 4 pounds. Acupuncture & exercise helped with the stiff neck, somewhat. They are paralyzed with botox. You need to wait it out. Please do not consider this treatment for pain management. There is no control over where the Botox will migrate. Acupuncture was working. I should have stayed strong with my doctor. My bad!

Before tinnitus I was not an extremely religious person. Church some Sundays, Christmas, Easter. I find incredible peace in church. I go daily to pray the Rosary and meditate. I pray to St Padre Pio, St Luke, St Jude, and the Souls in Purgatory. I have met many devout people who pray with and for me. I’ve gone to a number of healing masses where I felt at peace but no change in my tinnitus. This past week I went to a prayer circle. Two trained ministers pray with you for 20 minutes, then switch until you have 3 prayer sessions in an hour. These are very loving, kind people who believe in the power of prayer. After my first session my level went to a 3! I’m thinking ‘I’m back to where I was in August!’ Hooray! The next session I felt immense calm. The third session my noise level went to a 1! It stayed at a 1 for 3 days then it jumped between a 2 & 3 where it’s remained. I loved being a 1. You can live with a 1. I’m trying to get back there. I continue to meditate & pray the Rosary. I wait for the Botox to leave my body so I can book additional appointments with HBOT. I feel this therapy helped the most with multiple symptoms.

In September I started seeing a cognitive behavior therapist. She is trying to get me to think differently. I’m pretty positive these days. I’m thinking of stopping this therapy. I have a supportive husband who lets me cry when I need to. Gets me out of the house when I’m starting to feel low. Everyone needs a support team. If you don’t have someone to lean on I suggest getting a therapist or ask your parish priest for help. Support is out there, even free support.

I’ve tried the herbals, the supplements and yes, Ring Erase! It hasn’t helped but early on we feel we need to do something. Use noise maskers. I found a sound machine & fan for white noise as I sleep works wonders. If you’re having trouble sleeping try melatonin, Calm ZZZ, or Sleepy Time tea before bed. Exercise. Get fresh air. Go for a walk in the evening.

If I could do only one therapy it would be acupuncture with electrical stimulation. It really helped lower the volume. Download therapies on hypnosis and meditation. They are very calming. Relax, I know how hard it is to stay calm but it’s the best for you and your tinnitus. Don’t drink or take drugs. It spiked my tinnitus. If you want to indulge remember your tinnitus may spike but it will go back to ‘normal’. Cannabis smoked or taken orally may help tinnitus or in some circumstances it can cause tinnitus. I used a CBD salve for the ear and mastoid process pain. It was a God-send. If you’re doing TRT you should try to limit your anxiety medication. Your brain needs to be receptive to the training. Find a doctor who will listen to you. I had no medical support the first 3 months after my diagnosis. My doctor actually told me to ‘pull up my big girl panties & get on with life’ after I told her I was suicidal. That does not help! I have a wonderful team now. As I said before, it takes time. Have patience. Good luck.

 

Welcome to the forum. I have empathy for your sufferings and your bad experiences with botox treatments. Prayers do help to calm the tinnitus as this will calm our emotions. The less stressful we are, the less intrusive tinnitus can become. Anxiety and stress are toxic to tinnitus. You are on the right path. Hope you will continue to improve. Take good care. God bless.