Tinnitus, blurred vision..other weird symptoms

swg here's the link. Don't even try to catch up. They'res 1450 pages. truly aa nice group. Give it a look

https://community.breastcancer.org/forum/102/topics/767259?page=1461#idx_43803

Hi Quinn, Tinnitus is not my forte, but I will share the little bit I know.

Yes, ear trauma can be a source of tinnitus

Drugs can be a source of hearing loss with resultant tinnitus.

Contact Chevyboy here on BCO. Her tinnitus was caused from one of the AI's. I forget which one. She had to find her own diagnosis on the net which was later confirmed by testing. If I remember correctly the drug caused a stroke of the audiovestibular cranial nerve on one side. She has permanent hearing loss and now has hearing aides.

The in's and outs of how the corticosteroids affect all the structures of the hearing system--outer, middle, and inner ear is known, but whether it can have any affect on the nerve, I've not been able to get an answer too. I raised the question after I had a craniotomy in 2012. I was given dexamethasone post op. Dex and prednisone are in the same corticosteroid family.

After the crani while on the Dex, my hearing improved dramatically with a concurrent reduction in the tinnitus. The dramatic affect could actually be measured by the audio bar on the TV.

Pre dex and post dex completion |---------------------------------------------------------------------------|

................................................lowest..................................................................................Highest

.............................................................................................................................................my range...

My range on dex............................. X

Phone call, I will finish later

I have read that steroids will show improvement anywhere from 5 days to (double digit number longer than the 10 days Rx I got). So far no change at day 2. Do you know the mechanism for how it improves hearing? Does it help tinnitus or do those two things go hand and hand.

The ENT seemed to indicate the steroids would help whether it was an acoustic neuroma or auto immune issue.

I’m stumped why he gave such two crappy possible dx’s without even mentioning any other possibility! I assume it is it’s one-sided nature, but I would assume that 2005 noise event could also play into it’s one-sided nature.

Interesting on chevyboy. I’m in my 6th year of Exemestane, too fearful to stop. Have an appointment at UCSF in August to ask about that. I hope I don’t end up there earlier for brain surgery LOL

Hi there QuinnCat and all. I too am going down the tinnitus rabbit hole so here's what I know so far after two ENT visits:

The most likely cause of tinnitus is hearing loss. In a subset of people, our brains hear the silence, think something is wrong, and make up some fake noise to fill the void.

An uncommon cause is a benign mass in the ear canal - these tumors are very, very unlikely to be malignant. To rule this out/in, I have an MRI scheduled in early June. (Hey, I was getting my boobs scanned anyway, so why not throw in the ear canal?)

Estrogen loss makes hearing loss worse and tinnitus more likely. According to one ENT, everyone knows this but it is rarely discussed with breast cancer patients since "breast cancer can kill you and tinnitus can't." Progesterone, in particular, is important and is why women in general develop hearing loss later than men. Plus some chemo drugs cause tinnitus independently.

There's really no cure for tinnitus and I will have to ask my third ENT (yes, I am on that much of a rampage) about steroids. No one has mentioned that yet. Most treatment consists of tricking the brain into ignoring the sound with sound machines and the like - or getting hearing aids with a sound masking feature.

Happy to post with more info. as I get it because this is a super annoying side effect!!

An uncommon cause is a benign mass in the ear canal - these tumors are very, very unlikely to be malignant. To rule this out/in, I have an MRI scheduled in early June. (Hey, I was getting my boobs scanned anyway, so why not throw in the ear canal?)

Georgia - let's just say that "benign mass" is not so benign. Sure not cancer, but an acoustic neuroma surgery rarely has good outcomes. Most end up watching and waiting until it actually presses on the brain stem (which would cause paralysis and death) because unless a combo of being small (less than 1 cm), great surgeon, location, one will probably lose all hearing in that ear, though not always, perhaps damage to the trigeminal nerve (not pretty), lifelong headaches, possibly lifelong balance issues, nausea, still with tinnitus, etc.. Of course, one would want to go to the best surgical center for this ...on the West Coast, seems like brain surgery issues go to UCSF. That's where my ENT mentioned. It's a gamble versus don't have a choice situation. The result percentages also are a mix of good and not so good surgeons, so I suspect UCSF, or places like, will have better outcomes than the average.

Estrogen loss makes hearing loss worse and tinnitus more likely. According to one ENT, everyone knows this but it is rarely discussed with breast cancer patients since "breast cancer can kill you and tinnitus can't." Progesterone, in particular, is important and is why women in general develop hearing loss later than men. Plus some chemo drugs cause tinnitus independently.

Oh crap! Everyone knew this? Should I stop now?? My MO says it will only give me 1% more to go year 5-10. That's certainly not worth it if it gives me tinnitus as part of the package. I was going to UCSF anyway, in August, to gets some advice on that. I've been on it for 5 years and 9 months, so certainly could take that choice.

On my 4th day of steroids. Can't say my hearing was that bad to start with (my main complaint is tinnitus)...certainly not on max volume on the tv as you describe Sas!! There is a slight difference in the ears since 2005 after getting that sound insult one night at an INXS concert. I think the recent full-time tinnitus in right ear has made me perceive the bigger difference in hearing and it didn't really register on the audiologist test last week. I'm so confused about why the ENT chose to take my 30% figure difference over the graph the audiologist generated?? I'm hoping this led him to believe that I had a sudden hearing loss (sensioneural in one ear) and what alarmed him and gave me these two possibly crappy dx's, but in actuality, I have no difference in hearing from what I had after that one concert in 2005 and it's only the tinnitus that makes me think that (as I said before, lying on either side, head smashed against pillow, listening to XM radio is where I noticed that bigger difference since the tinnitus started in earnest, XMAS 2017).

Still waiting for the MRI people to call.

Sas-schatzi and QuinnCat, thanks for the info and the encouragement to keep looking into this. Yes, it's interesting to get out of the orbit of breast cancer world, where the doctors only care about breast cancer, and get a fuller picture of what estrogen loss really means.

QuinnCat, let's hope both our MRIs are clean. Whew. I need another health issue to deal with like I need a hole in the head. But in my case the ENT noticed a lack of sound quality, in addition to hearing loss and tinnitus, in the right ear only. So she wants the MRI just to rule out a "mechanical" issue and confirm it is the sensorineural "brain filling in the sound void" thing. I totally support you having a serious conversation with your MO and GP (and OB/GYN and ENT) about the pros and cons of staying on Tamoxifen for more than five years. The risk of tinnitus seems quite real.

Sas-schatzi, I wish I had an answer for you on who gets tinnitus, when, and why. All I'm getting right now is "it's mysterious" and "it's hereditary" and "crap we don't really know anything because the neurologists are all researching much more interesting things." Hugely annoying but I have one more ENT to pester and will post more as I learn it. So far I've found there is some evidence that magnesium and taurine can help with hearing issues and tinnitus, and sound masking is another approach.

Meow13, I'm glad you saw improvement after going off the AI. It would be nice to think tinnitus is temporary.

swg, yes, our health care system is just awful. I feel lucky to have such good insurance and will return to share all the info. I can.

Sas - the insurance aspect makes sense! And what doctor would not want to find such a dx early because he didn't order an MRI. I wish he had known I had great insurance that never turns me down for anything, though just for self-protection he probably ordered one, but he might have qualified the gravity a bit.

Quinn in quiet times it is greater b/c we have no distraction. The Concentration on something else takes away the noise.

The Resetting research is important. I used to do it. Not sure if I posted on this thread about it before. But it's strong memory now. It did make a difference.

If you can reset it lower that is a GREAT thing. The "Capture " idea has an analogy to rapid heart rates. A pacer machine would be turned up to a rate just higher than the heart rate ---caputure the pacing ---then bring it down. This is an old concept. Prior to drugs that could do it. It was a short use treatment. It was called Over Dive Pacing. No clue if it fell out of favor as treatment. When I read about the Raising the noise to above the present noise level, I was familar with the concept of Over Drive Pacing. Ergo, tried it. For me it worked.

Not sure where I was on AI's in the period I used resetting or anything about the scenario.. Just a memory that is there, with holes. Enough memory that it worked and I had a plan.

To add another conundrum--puzzle to the story: When I take opioid pain medicine that affects pain brain receptors, my hearing loss gets way worse AND the tinnitus gets way low. As a nurse giving pain meds for 40 some years, I never once had a patient complain of hearing loss with pain meds. Any doc I ever brought this puzzle too, just schrugged it off. i.e. they haven't a clue.

Another memory just surfaced, after the crani, I woke up and couldn't hear well and my jaw was frozen b/c I had a TMJ problem from a 19y/o time of 4 wisdom teeth removal and the jaw froze. Bad and funny stories about that for many years, but some research about TMJ and Tinnitus maybe a link. Worth a google.

Quinn, Hate it when the treatment/testing seems to make it worse. Google "resetting tinnitus" It was long ago that I read about it. Not even sure if I descried it correctly in last post. Music was involved, but there was something else. Used it when the things would get to a roar. It would bring it down. Never took it away, but made it less horrible. The advantage now is it brought back the memory while talking about it here.

Today was a bad hearing day due to weather. Tinnitus varies on bad hearing days due to weather. Today was bad enough I stopped about 50 some miles from home at a pharmacy. Talked to the RHD. Sinus drainage, swelling,hearing all an issue. She suggested Flonase which is now OTC. Now home and it's been 3 hours. It's a steroid. Now swelling is better, this helps with drainage. Posterior pharynx swelling less---no way perfect--but better. No tinnitus right ear. Summer's eve crickets in left ear. That's a very nice shift.

Tomorrow going to try mucinex along with the flonase. I hate adding drugs, but I was desperate.

Not every "trick" works for others, but we never know what we share may work for someone else.

Meow-I have read tinnitus louder at night for many. I didn't say “worse" as I have it full time now and that implies better...never better. I know it is worse for me in the evenings. The reason I read cited it is quieter, generally at night. Not sure I buy that, but for sure lying in bed that could be true.

I'm so suspicious of fluid in the ear, though neither ENT saw any. The doctor's asst mentioned it as a possibility when I called last week, implying they couldn't see everything, but maybe she was just trying to talk me off the AN ledge. Maybe Flonase worth a try? (I never have sinus issues, but further demonstrating my lack ofcommand of head anatomy, I seem to recall with my earaches in youth, small Eustachian tubes, but a child's memory combined with the lack of one as an adult should be viewed with suspicion). But this did all start with a normal allergy (my only one) to the conifer tree Incense Cedar (which normally goes from late December to early February).

Recently I've been waking with a slight headache. This is new.

Sas - going to look up "resetting tinnitus" during my next free time period (my life is in time blocks now). Next one is a hike in the woods!

Pupmom, No question tinnitus can have an origin to loud music, but they're is a laundry list of other causes. The only one off hand that may be correctable is from drugs. For example, high dose aspirin can cause tinnitus which can be reversible with reducing the dosage or discontinuation of the drug. In an older time when aspirin was a mainstay drug for arthritis this was a common issue.

Meow, "Oh what a relief it is". Not sure if there is anything out in the internet nether world that would describe if "when tinnitus starts is it always loud" and "what percentage of tinnitus folks describe that it gets softer over time". Mine was a roar in the beginning. Then became progressively softer over the first year. It never returned to as bad as the first few months. I don't think I would have survived if it had stayed at the same level as the first 1-2 months.

I do now that my initial study described that people had it so severe they committed suicide. My ENT doc standardly says to new tinnitus patients " This problem is not my fault, I can't cure it, please, don't kill me" I asked why he would say such a thing about killing him. He related that not long before that, a patient killed his ENT doc b/c he blamed him. Sometime years ago there was a famous actor that gave up acting b/c he couldn't work with the noise.

At least what it seems like here, we are coping. But it sucks.

Update - tinnitus in one ear (right) still going strong. It has changed from the the type of noise one ears sitting on a commercial airliner to that plus a whistling noise. It is really only noticeable if I'm noticing it (during the day when not involved with activities) or at night and especially when head meets pillow. I have not tried the resetting yet. I am acting as if it is going to go away eventually!! My brain MRI is this Wednesday. In the meantime I have been so busy with a sick cat (who was dx'd with either IBD or cancer) that just getting her squared away has been a process. Turns out I changed her food in early April and she was suffering some sort of reaction to that. $1000 later...oy vey.

Funny how life sometimes is just about perspective. With the headaches I started thinking brain mets and then to have a dying cat - what's a little Acoustic Neuroma? I'll take that any day and the headaches are gone (I would have made a mess of that top sheet Sas on any day of the week!) After reading some very discouraging things about AN, I am more recently encouraged by some good outcomes (though hearing preservation isn't necessarily one of them). Not all good outcomes, but a lot dependent on the doctor one chooses. Luckily, family and friend wise, I'm very lucky to have a good logistical relationship with UCSF, which seems to be a good choice for anything brain, though funny, I'm going there anyway, for a second opinion, on continuing on with hormone blockers in August. Sadly, I could not get into to see Dr. Hope Rugo for that (only taking Stage IV patients), but was referred to a doctor specializing in BC Survivorship.

Georgia - please let us know what you find out! Is your tinnitus in one ear or both? Mine is only in one ear, so I got Acoustic Neuroma and Auto-immune disease as my two differential diagnoses. What did they suggest for you?

Can you tell me about the MRI?? I've had many of course, with BC, but I do not do well. This time I have some valium to take, but curious why one friend said she went in head first up to her shoulders but the imaging place said I'd go in feet first for a brain scan! Did the woman I spoke with really know?