Telling My Story to Those Who Understand

Hello all. I have been lurking on these boards for months now and reading your stories and helpful advice. Thank goodness for the Internet as it does give me some peace knowing I am not alone in this horrible T struggle.

I know there is a lot of info in this post that may not have anything to do with causing T. Please forgive me for that. But if someone else has had similar health issues and T then maybe it is worth the read.

So here I am at 4:30 in the morning. I can't sleep anymore tonight due to the ringing in my head. Might has well post my long story. Writing down this whole story is about all I have not tried yet. And maybe someone out there has more advice. And maybe something I have tried will help someone else. So here goes all....

I am a 44 year old female living in mid-Missouri. I am originally from Kansas City and almost always lived in an urban area. Despite occasional Migraine Headaches when I was younger and being a smoker, I have always been pretty healthy. My biggest health challenge has been panic attacks, anxiety and depression systems. But even those things have never affected my quality of life. I have taken .25mg of Xanax and 10mg of Lexapro faithfully for several years. I also have a standing RX of Valtrex to take for the HPV Virus as needed. I eat pretty healthy and drink socially. I have never been overweight and I am pretty active – at least in the summer months when it is nice to be outside. If I had to find a complaint, I always seem to tire more easily then other people. And I get cold very easy. If it is not at least 80 degrees, I have goose bumps. Three years ago, we moved to mid-Missouri. We now live on the Lake amongst a great deal of Oak and Dogwood trees and a whole lot of other vegetation. I mention this because since moving here, I do seem to have sinuses allergies that I never was bothered by before. So is my ear and sinus and T discomfort related to allergies? And if so, why did it take 2 years to show up?

In the fall of 2012, I began having symptoms of pre-menopause. I saw my general practitioner in January 2013. We decided on a Depo-Provera shot to try and regulate my periods which had become very heavy and irregular. (Sorry Gentleman….) That was a big mistake. My hormones went crazy. Depo had the opposite affect on my periods. I was a nervous, shaky, moody mess so I did not have another shot.

In March of 2013 I was walking along the lakeshore when I took a hard fall. I fell backwards down a hill, went air born and landed on my back. My head hit the large rocks along the shoreline. I am not sure exactly which part of my head hit as I blacked out for a few seconds and my breath was knocked out of me. Did I break something in my head or ears when I fell? Not according to an MRI but more on that later. Other than being a bit sore, I felt fine the next day.

I went to an OB-GYN and opted for a uterine ablation which took place in July, 2013. To prepare for that, I took an RX of Provera for 20 days prior. I also had 5 days of Cipro after and Hydrocodone if I needed it. I only needed the Hydro for the first day.

I should mention that in the few months prior to July, I had a lot of stress. We had a death in the family, my son was hospitalized for a few weeks (By way of explanation, he is bi-polar. Hospital stays every few years are normal). And my 20 year-old daughter decided to move out of state with a “looser-dude.” My stress level was off the charts. During this time I had horrible stomach pain, heartburn and acid-reflux. I had never even had mild heartburn before this. Went on Prilosec for a couple of weeks and all was well again.

It was also during this time that I began to notice the T. It was not constant and not all that bothersome at first. I hoped it was related to the hormones and stress. After my ablation procedure, the T got louder and was 24/7. This combined with my pre-menopause symptoms and weight gain (30 lbs), trouble concentrating, brain fog and horrible fatigue convinced me that I had a thyroid problem. I went back to the GYN in August and he tested my thyroid. That is when my world exploded.

I had bad migraine headaches while in my teens. After having babies in my twenties the headaches went away. I might have a real migraine about once a year since then. I’ve learned to always have a cup or two of coffee in the AM and never to let myself get too hungry as I would almost always get a headache. For the thyroid test I had to fast. So I skipped my morning yogurt and customary 2 cups of AM coffee. After the blood draw, I developed the WORST headache ever. Went home and slept for 12 hours. The next morning the pain was gone but I still had the migraine aura and I sure did not feel right. I left for work but between home and work my brain had a short circuit. I ended up in a Wal-Mart parking lot not knowing how I got there. My brain was major fogged, the left side of my face was numb, my left leg felt like it weighed an extra 50 pounds and I was stumbling over my left foot. I lost peripheral vision in my left eye. Thankfully I got it together enough to call my husband who took me to the ER. They refused to give me migraines meds saying I must consult with a Neurologist first. They also ruled out a stroke. I did have a negative CT scan. I went to my GP for the referral. I told her my whole story again and they ran blood work for thyroid, lupus, MS markers and a whole host of other scary things. All came back negative or "normal." By now the T had moved into my head full-time. Rather than hearing it occasionally, the T is now 24/7, loud and proud and driving me crazy. My Dr. sent me for a MRI and MRA and set me up with a Neuro.

Guess what? All results still normal. How can that be? I have constant bells ringing in my head! Thank God for Xanax! The Neuro sent me for several sessions of physical therapy and gave me Topamax to take daily and Imitrex to take as needed. He did not seem concerned about the T. I should have pushed him harder on that as now I cannot get back to see him until December. I have found that I cannot take the Topamax. It makes me feel drunk and no way can I work and take care of my family like that. If I feel a headache coming, the Imitrex is a life saver. I think the Imitrex helps the T but since I can only take it when I feel a headache I don't know for sure.

The physical therapy has been great. It has taught me some good exercises that stretch my neck and also relives the tension and helps me cope with the T better. I do know that when I am up and moving around, the T is not as bad, but it is still there. It never goes away. My physical therapist suggested trigger point injections. I had the shots a few weeks ago but they did nothing for the T. I had 3 shots in my shoulders. Next time I well see about getting them closer to my ears.

I now decide to see an ENT but it takes 3 weeks to get in. So now it is mid-October. This T has made me a basket case. There are times I roll on the floor crying and screaming. I have beaten my head into a wall literally trying to get relief. Thank goodness my husband is a saint. I swear I am not suicidal but I can sure understand how people can get that way. I am certain I have lost hearing in my left ear. I can put an ear-bud in my right ear and hear music great. I put that same ear bud in my left ear and the sound is 30% less. I don’t understand words as well as I used to.

Also, I have noticed over the past several weeks that my ears feel “full” – like my E-tubes are blocked off. My ears have sharp pains in them. My sinuses feel full of air – not mucus. The pressure is so bad that my face begins to hurt and I get a headache (Hello Imitrex!) My top front teeth hurt and my face tingles. Well OK, maybe I am finally getting somewhere. This has got to be a sinus problem right? I can’t wait to see the ENT. I really get my hopes up – thinking he will see something wrong or that he will give me oral prednisone or prednisone shots or ear tubes or something that will help. I have read every message board, blog and internet article that I can find about this crazy Tinnitus and I am prepared for this visit. I have followed all of the non-prescription and non-procedure advice. Here is what I have done so far:

• Added B12, ginkgo, niacin and vitamin E to my daily meds. I am taking them faithfully but I do not notice a difference.

• I have multiple white noise apps on my iPhone to mask the T. They help me to ignore it and I must listen to them every night to fall asleep. I also have meditation and hypnosis apps by Glenn Harrold. These help so much with the stress. If you have T and stress, download his apps and listen to them with ear buds. When the T and the stress become too much, these apps are a life saver.

*I stopped Lexapro cold turkey 3 weeks ago hoping it would help as I read that long term use of anti-depressants can cause T. No relief yet but my anxiety sure has spiked without it. But I have gone this long without it so I am going to try and stay off it.

*When the T gets really obnoxious, I use a personal massager on my ears turned up as high as it will go. I place it on my ear lobes and on the areas around my ears directly on my skull. Sounds weird I know, but it turns the T volume down temporarily.

*I do find the being on my feet and walking around does reduce the T. It is always there but the volume goes down when I am not sitting or lying down. Weekends are great because I can move about the house cleaning and doing chores and the T volume drops a bunch. But I am so fatigued that I have to take frequent breaks.

*I read somewhere that T might be related to a virus or a viral infection. I am now taking 1000mg of Valtrex a day just to see if it will help. Just started that yesterday so too soon to know results.

So I finally see the ENT this week. What a waste of time. The guy has no bedside manner and just did not care. He said there was no wax or fluid buildup in my ears. My ear drums look normal. He said there was nothing he could do for me until I completely eliminate caffeine and stop smoking. What the hell? He refused to see past the fact that I smoke and drink coffee. He will not consider oral Prednisone or a prescription decongestant (All the over-the-counter ones have been tried have not worked) until I quit coffee and cigarettes. If I do that he might consider giving me prednisone shots in my ears. He did invite me back to his office in 3 weeks (another co-pay??) for a hearing test.

He did do a couple of things. He put a large metal instrument that looked like a skinny goal post next to both of my ears and hit it with something. The noise it made hurt my ears so bad I almost fell off the table. He also put a snot syringe with an ear plug on the end of it into my ear canal and very forcefully pushed air into both my ears. The T completely stopped for about 60 seconds. At that point he basically called me a liar and said I did not have T because I could not hear it for a minute.

Now let’s be reasonable. If air is painfully forced into my ear, opening up my E-tubes and the T stops, shouldn’t that be a sign that there is something wrong with my ears? My ears pop and crack almost every time I yawn, swallow and chew. Sometimes the pressure in my ears is so “off” that I have a hard time swallowing. My ears and sinus’ feel like I just got off an airplane. I really think my ear tubes are collapsed most of the time. Sometimes when I get up, I am dizzy and have a hard time keeping my balance for a few steps. I did buy a snot sucker and have been forcing air into my ears for T relief when absolutely necessary. Since I started that, my left eye hurts and feels puffy.

Something else really weird. When I lie down at night and the T is roaring, I can tighten the muscles in my throat and jaw and change the volume and pitch of the T. Some times when I move my eyes back and forth horizontally, I feel zaps and swooshes in my brain and the T changes with that too.

I know people who drink coffee all day and also smoke and they do not have T. While it may help to remove coffee and nicotine, this cannot be the only course available. My job requires me to be in front of computer all day. The Dr. told me I needed to stop using a computer. What a gem of a guy!

Obviously I have no intention of returning to this Dr. I have another ENT appointment set up in a town 60 miles away but can’t get in until December. Since I have read that oral prednisone may help, I have placed an order online from one of those “no RX necessary” offshore pharmacies. If it shows up, I will follow dosage instructions found on these boards to see if I can get relief.

I know a lot of this sounds like Meniere’s. Hoping to find a Dr. someday to say it for sure and to help me manage it.

I realize that smoking is not good for me. I am going to buy some electronic vapor cigs as soon as I can afford it. Yes, I am one of "those people" who truly enjoys smoking and quitting will be hard. I am setting what I hope is an achievable goal to cut back with the help of the vapor smokes. Again thank god for Xanax!

A bit more info that might mean something…..

I work as an office manager and controller for a car dealership. I started that job in July 2012. The job does give me some mild exposure to automotive chemicals and also the noise of the shop tools. My desk is 3 feet away from the computer servers. The servers have a mobile partition wall around them but I have the constant "white" noise from them on my left side. I never noticed the noise much until the T started. I wonder if the servers are exposing my hearing to something "electronic" or high pitched that could contribute to my T and hearing loss. I have also noticed that the sound of the electric staplers and typewriters in the office really aggravates my left ear. Not that I can do anything about it. Go to keep going to work!

Wow. Just writing all of this down has made me feel somewhat better. Hugs and prayers to everyone who suffers with this crazy ear noise. Thank you for reading.

 

Gosh @Lake Girl, that's quite a story. Well, after reading through everything, it's still hard to figure out what exactly might have caused your T. There are lots of reasons why you could have got it. Right now, I've got a few suggestions for you, try following them.

• Coffee does make T worse for a few. To check, you better quit it for a few days. Quitting completely is hard, I know. You can reduce it day by day and quit it slowly. Even smoking. Smoking is definitely bad for health, you can quit that. If not now, you'll get something worse due to smoking in the future.
  
• Wear earplugs and protect your ears.
  
• If it's possible, take a few days vacation to someplace peaceful. Get away from work for a while. This is the only way you can see if stress has anything to do with T. Get away from your daily activities and just relax for a few days, I'd suggest a whole month. I'm guessing it won't be possible, but if it is, it'll be worth it.
  
• Try to not use the computer much. It does make your eyes dry and I'm not saying there might be a connection b/w that and your T, but it will reduce the stress. Basically, just get away from all your schedules and relax for a few days. You sound like you really need it!
  
• You said walking around the house sort of reduces your T? Then start taking a walk everyday outside the house for 20-30 minutes early in the morning. It might help.

 

Great advice insane. I am starting on half-caff coffee tomorrow. Scared of a headache if I quit all at once. I am sure stress relief would help. Hope to get some soon. I think a supportive Dr. would help to as so much of my distress is physical pain and discomfort in my ears and head. Thank you for the advice.

 

Yes, don't quit coffee altogether. Keep decreasing at a stable rate. And yes, go see a good doc who'll help you relieve your stress. Stress may not be the only cause for your T, but getting rid of the stress will certainly make you feel better and probably will reduce your T too! Good luck!

 

Thanks for sharing karen, always great to here your stories...

 

Hello @Lake Girl , I hope you're doing better... I found your original post (and read it all) cause I was looking for a connexion between Ts and Valtrex. I'm taking 1000mg each 2 days for about 10 years now (don't ask me why, but 1000mg every two days works better for me than 500mg each day)... I'm still uncertain of my Ts source, so I keep searching...

Since a few of your symptoms make me think about my own story, I'm wondering if you've ever been tested for Lyme disease? I've been suspecting this myself, but tests here in Canada are really not reliable ...

Good luck to you...

 

Lake Girl! Hang in there. I can relate to unrelentless and loud T in bed. It's hard. I keep taking it day by day and trying to make my life as close as what it was before this T that i can. I believe soon there will be a pill like asprin created to quite if not eliminate this terror. Auris Medical is doing trials at this moment..you've probably seen the threads.

Stay strong and remember I 49 male and many others suffer as you do. We just get through it.

Oh...that ENT was a complete "jackass". Excuse my language. I would have walked out of his office and before i did told him to shove that snot tool up his.