Tinnitus Since October 2014

Hello everyone! I've been lurking on here for a little while. Reading everyone's stories has been helpful and informative. I've decided to share my journey with Tinnitus so far.

Prior to October, I was very healthy. My only issue was fertility. My husband and I started treatments in August. Then in October I developed a slight ringing in my right ear. It wasn't loud or constant. I was dealing with some other health issues. At one point my doctor thought I might have Lyme disease. 2 negative tests later, that doesn't seem to be the case. They did treat me with 6 weeks of antibiotics just in case.

Over the next couple of months, the ringing increased in volume and became constant. I woke up one Saturnday in December and it seemed someone had turned the volume up on my ears overnight. It was jarring and terrifying. This seemed to fade a bit after a week or two, however, certain sounds, like dishes clanking in the sink, are still painful at times. The volume on the TV and radio are still set at a lower volume than before, but I seemed to be making some improvement.

The Saturday before Christmas I woke up and while the tinnitus wasn't gone it was at a more manageable level. I began to sleep better and feel better in general. This lasted about a week and a half. I went to bed on New Years Eve with a headache, and woke up New Years Day to find that all of my previous symptoms (plus some) had returned.

Due to other health issues (parasthesia, numbness and widespread pain and weakness) I have already had a CT, an MRI, an EKG along with 24 hours of monitoring with a Holter monitor and a few pints of blood work. All tests have been normal so far. I am still waiting for the results to the panel they ran to check for immune disorders.

I've seen a neurologist, 2 ENTs and 2 Audiologists. Neither ENT saw anything that would be the cause of my problems. One suggested all I needed to do was pray. Not opposed to that option, but was slightly surprised to hear that suggestion come from a doctor. It was the reason I sought a second opinion. Both Audiologists noted slight lower register hearing loss. Everyone has said I'll just have to live with it. Based on that I started researching and reading everything I could to educate myself.

I found an audiologist from Dr. Jastreboff's page. She isn't cheap, but I'm cautiously optimistic that she will have some ideas. I see her Tuesday, which feels like it can't come fast enough. I am concerned about the cost and if I will be able to afford it. I don't think I've had Tinniutus long enough for her to suggest TRT or similar treatment, but I would like to be evaluated by someone who is familiar with this problem.

Besides the constant ringing, the insomnia and sleep problems I've developed are my biggest complaint. My Primary Doctor has prescribed Ambien CR and it gives me about 5 hours of sleep a night. I'm thankful for that, but I do miss the days of waking up feeling fully rested. I would like to stop taking it, but so far it is the only thing that has worked.

I also noticed that based on how I turn my head, my tinnitus becomes louder. I sought help from my chiropractor for this, but so far I've no received no relief from his treatments. I almost wonder if it is worse because of them. Based on his X-rays he says I have a reverse curvature of my neck. Could be from an old whiplash injury.

I'd love to hear from other people whose tinnitus came on with other underlying symptoms. Even if you haven't been diagnosed, it would be nice to compare symptoms. My main presenting symptoms are tingling hands, feet and tongue. Cold spot/feeling on the brain. Muscle twitching and muscles weakness. Occasional painful joints and muscles. I also have a feeling of fullness in my head and ears. Occassioanl ear pain with constant popping. I generally have a headache in the evening which sometimes is a severe migraine. I've also felt like I've been coming done with the flu on and off for a few months now.

Can anyone else relate to this? Is there anything else I should try? At this point I am working on staying positive and focusing on taking care of myself but it would be great to talk to other people who are experiencing the same things as me.

 

Welcome, though I guess like all of us you'd rather not have to be here. Your symptoms are very similar to mine, indeed startlingly so. I was away in Austria on holiday and had sudden hearing loss after a dreadful headache. When I got back home four days later, I still had no hearing, so had steroids, and MRI. They suspected acoustic neuroma, but it was not that. My scan showed white patches where they shouldn't be on my brain, particularly the brain stem, it seems I'd been having mini strokes. My symptoms were and still very much are, numbness in my head/face, tingling, very loud tinnitus, balance issues, muscle twitching, headaches. My mini strokes come from a heart condition, previously undiagnosed. Now taking warfarin and beta blockers.

I know I'll never get rid of the full feeling in my head and ear, or tinnitus, but I live with it as I know it could have been do very much worse, though I'd prefer to not gave it.

 

Slipware -

Thank you for responding! I'm sorry for what you are experiencing, but it sounds as if you are being as positive as possible which I know can be hard.

So far my MRI and CT are clean. They were looking for spots, lesions or tumors. Does anything help with the feeling of fullness/pain in your head?

Have you tried any treatments for your T? TRT or Neuromonics? My concern in trying one of these treatments is that without knowing if I have an underlying illness, they will not be effective. Things like MS and Lupus have been thrown around by my doctors. If I do have something like that and I am not treating the disorder, would TRT help? That's one of the questions I plan to ask the audiologist on Tuesday.

 

This terrible tinnitus has haunted me for just about a month now and like you the biggest problem is the not being able to sleep. A friend recommended a sleep machine app that a person can download on their phone. I have been using it as well as some medititation techniques and with success I will fall asleep without medication for about five hours. The problem is once I wake up in the morning is when my ringing is at its worst so there is no falling back to sleep.

 

I sleep with a box fan and occasionally I've played some white/pink noise on my phone on top of that. Unfortunately, I haven't been able to sleep without medication, but I am hopeful that can change soon. Even with then meds I find myself jerking awake after 4-5.5 hours. I'm sure it's due to the meds wearing off. I also find that the position of my neck when I sleep increases the loudness of the T. I try to creatively place my head on the pillow to reduce the ringing as much as possible.

Mornings are definitely the worst followed closely by nighttime before bed.

I also added some vitamins to my regiven, but the more I read, the more I think I may eliminate some of them. Specifically the Ginko Biloba. It seems some have had a worsening of their condition after taking it. I also take, Zinc, B12, Vitamin D, Grapeseed Extract and a multi vitamin.

 

Certain antibiotics are known to be ototoxic. 6 weeks of treatment seems like a long-ish course.

When the cause is unknown, there are flow-charts such as this one that can be used to possibly pinpoint or rule out the various etiologies.

 

Trust me it's a shorter course than one of the doctors wanted me to do. His treatment made me very uncomfortable. I went back to my PCP and she said 6 weeks was not unheard of for the treatment of Lyme. Since they thought I had an early infection, which sometimes doesn't show antibodies in the blood right away, she prescribed the second course. 2 tests later there are still no Lyme antibodies appearing. I know there are many people who don't think you need a positive test to have Lyme. I'm not at that point yet.

I did 2 weeks of Amoxicillin at 500mg 3x a day. When I did not respond to that, they switched me to 500 Zithromax 1x a day for 30 days. The use of the Zithromax concerns me because I've read it can be ototoxic.

Side note, has anyone ever read anything about Gonal f being ototoxic? Or Ovidrel? Both of those were the fertility shots I was doing before I started feeling sick and having ringing ears. Just seems like there might be a tie between the fertility drugs and all of this. Every doctor keeps saying no though.

I'm going to show that spreadsheet to my PCP and audiologist. I really feel like my body is under attack and the tinnitus is one of the side effects. It's hard to explain, but given the widespread problems I'm having, something is going on. I also have an appointment with a Rheumatologist soon. I'm hopeful that figuring out what the underlying problem is will help with the T. If not, then maybe I can try TRT or some other method to help me manage it better.

Thank you!

 

I agree that the position of my neck when I go to sleep definitely irritates or helps. My T is only in my left ear so I found that if I lay on either side its pretty loud. I find that laying on my back with my head straight forward is the best for me which is a struggle in itself because I never used to sleep that way and have basically had to train my body to fall asleep like this.

I also added certain vitamins and herbs to my daily diet but I don't really feel that any of them have really helped. Have you tried valerian for sleep? On nights I am having a really hard time, it usually helps plus it is also good for treating anxiety which lets face it, when you are up half the night and dead tired anxiety is another reason on top of the T on why you cant fall asleep. Try it out, see if it works It seems to take some time for body to get used to it and for it to actually do what it is supposed to do but give it a week or so and you should notice a difference. You can get it anywhere really and its fairly inexpensive.

 

There are several apps that will help you sleep, like white noise, rain sounds etc. Down load them on your smartphone or laptop.

https://www.tinnitustalk.com/thread...ows-phone-apps-plus-post-good-deals-here.302/

ENT will basically look with a light in your ear, nose and throat. I doubt ENT will be able to do much, unless you do the audiometry Test and a BRAIN and EAR MRI.
Did you have any head or neck injuries lately? Ear infection? did you take any ototoxic meds?
Did you listen to loud music with headphones for long periods of time?