5 Months with Tinnitus

[MrsWednesday]

Hi everyone,

So, it's my 5th month with this thing and after doing a lot of reading on here I finally set up an account.

I'm a 33 year old woman with a severe disease that has left me completely bedridden for almost 4 years now. I started noticing a high-pitched sound in my left ear last December but thought it must be the sound of the Christmas lights. When it got so annoying, I asked my partner to turn off all electrics, and the sound was still there.

In the weeks to follow, this sound stayed with me and I noticed a lower sound, more like a tea pot, in my right ear. That was bothering me a lot at first but after a few more weeks i got used to it.

Some time in March, the high-pitched hissing/Electric Drill Sound in my left ear suddenly got a lot louder and since then I have gotten 3 additional tones in my left ear. The right ear is unchanged with one frequency that doesn't bother me much.

The complication in my case is: I cannot see an ENT. At this point in my illness, I can only be transported to a hospital if I have a life-threatening complication. No ENT here is willing to come to my home.

I have done a couple of online hearing tests and my hearing is good, but I have a huge dip at around 10k Hertz in my left ear, which could be about the frequency that is bothering me the most.

I have good days, but the disheartening thing is, they are getting fewer, not more!

The last 4 weeks have been really bad.

I have to take ibuprofen regularly for migraines (~10x400mg per month), and I couldn't survive without them. I'm not sure if they make the tinnitus worse, having had both very good and very bad days after taking ibuprofen.

Honestly, at this point I am scared it is going to get worse and worse and there will be even more new frequencies. The T seems to react to louder but harmless sounds like a fan. It's worst in the afternoon and of course most noticeable at night.

Thank you for reading this far and I would absolutely appreciate any comments.

 

[Bill Bauer]

I have to take ibuprofen regularly for migraines (~10x400mg per month), and I couldn't survive without them.

Is it the case that you can't replace ibuprofen with tylenol?

 

[dingaling]

Hi MrsWednesday

Are you willing to share what your condition is? A lot of medicines list T as a side effect. I know from experience that being bedbound gives us more time to ruminate and dwell on our problems. What are you doing for your T - e.g. have you tried a bedside fan, noise box (e.g. nature sounds), calming music or even the radio/TV?

 

[glynis]

Maybe get a hearing check in your own home.
I think Boots Chemist and Loyds offer this service.
If you have a support assitant whom comes to your home ask them to help you look in to it.
Love glynis

 

[Agrajag364]

Ibuprofen can cause tinnitus. See- https://www.health.harvard.edu/dise...s-ringing-in-the-ears-and-what-to-do-about-it

Is there not any other medication you could take for migraine?

 

[MrsWednesday]

Thank you very much everyone for your replies!

Is it the case that you can't replace ibuprofen with tylenol?

Unfortunately, Ibuprofen is the only pain med left for me as I don't tolerate anything else. That's what makes this such a difficult situation! I may give Tylenol another try but in the past I haven't tolerated it at all and it didn't help much with migraine pain.

Maybe get a hearing check in your own home.
I think Boots Chemist and Loyds offer this service.
If you have a support assitant whom comes to your home ask them to help you look in to it.
Love glynis

Thank you so much, Glynis. I should have mentioned that I'm in Germany. So far no luck in finding someone who provides hearing tests at home.

Hi MrsWednesday

Are you willing to share what your condition is? A lot of medicines list T as a side effect. I know from experience that being bedbound gives us more time to ruminate and dwell on our problems. What are you doing for your T - e.g. have you tried a bedside fan, noise box (e.g. nature sounds), calming music or even the radio/TV?

Thank you! I have several diagnoses but nobody is entirely sure what's wrong with me (or how to fix it). I have a diagnosis of severe Myalgic Encephalomyelitis and Mast Cell Activation Syndrome, among others. Generally, my immune system and energy production in the mitochondria are completely messed up.

I have tried nature sounds, the TV and at first a little soft music. The music seems to make it worse, tv is ok but doesn't really mask it. Sometimes sounds from the "myNoise" app help, sometimes they seem to make it worse. I just haven't figured out clear patterns yet.

I wonder how many different sounds you can get in one ear?

 

[MikeV]

Have you tried this, and looked for specific frequencies? MyNoise doesn't help me much but give this PC link a try. Have different tones to select from and you can slide the entire frequency. Been a real help for my tinnitus, but then I believe I have residual inhibition type T. Try freqencies in the 4000, 8000-10,000, and 14,000 - 16,000 Hz range. Let us know....

https://www.audionotch.com/app/tune/

 

[MrsWednesday]

Have you tried this, and looked for specific frequencies? MyNoise doesn't help me much but give this PC link a try. Have different tones to select from and you can slide the entire frequency. Been a real help for my tinnitus, but then I believe I have residual inhibition type T. Try freqencies in the 4000, 8000-10,000, and 14,000 - 16,000 Hz range. Let us know....

https://www.audionotch.com/app/tune/

Thank you, Mike. I find it pretty much impossible to identify a frequency or even a range for my high-pitched sound. Do you use the notch treatment as well?

 

[MrsWednesday]

Update:

Yesterday I had another migraine. I was able to fall asleep without a painkiller, but woke up an hour later with my T now an unbearable loud cicada/squealing sound in both ears. It has never been nearly this bad during these 5 months. The migraine was also really bad so I tried Tylenol. Waited for 1,5 long hours, didn't make a dent. Then succumbed and took ibuprofen, which helped.

It didn't get any worse after that but it hasn't gotten any better at all, and my good phase is usually in the mornings. Right now it's an absolutely unbearable squealing in both ears that is driving me insane. I tried masking it with cicada sounds over speakers but that made it worse.

Is there any hope that this is going to turn around again even at 5 months, with this last month being the worst by far?

I have found an audiologist who is going to come to my home to do an audiogram this week. I was hoping that a masker or noiser might help me cope, but if the masking noise actually makes it worse, is there even a point?

I'm feeling really desperate and hopeless right now.

 

[Lane]

I have a diagnosis of severe Myalgic Encephalomyelitis and Mast Cell Activation Syndrome, among others.

Hi @MrsWednesday,

I have similar health issues, so I can very much empathize with your situation. I had very serious pain issues myself for many years (mostly chronic, severe headaches), but was not able to find ANY pain medication that could help me on a consistent basis. My best option was Tylenol 4, which is 75% codeine. But if I took a second dose within the next day or so, I could easily get a "rebound" headache, which made the pain even worse.

In my search for pain relief, I tried many different remedies, among them DMSO and coffee enemas. I normally say little about them, as most people have a hard time understanding how something as bizarre as putting coffee up your bum can possibly do any good. But they work wonders for me in controlling my pain, and in turn controlling my overall sense of well being.

DMSO is irreplacible for me as a way to reduce pain and inflammation. I suffered for years with chronic pressure in my head, which is now 80-90% better. -- I think there's a good chance your tinnitus is coming from your pain medications. If you could find a good replacement for them, that might be a step in the right direction.

My recently acquired tinnitus occasionally reaches screeching circadas as well. Doing coffee enemas reliably brings that "worst" of tinnitus sounds down to a high ringing pitch. On some fortunate days, I can actually get the tinnitus sound to tamp down enough (while doing a CE and simultaneous simple energy balancing techniques) that I can actually "push it out of my head" for a minute or two. This is a HUGE temporary relief, and I'm hoping to improve on this as I continue to experiment with various energy and polarity balancing techniques.

Since you have ME/CFS, you know quite well that conventional medicine has little to offer us, and alternative health therapies don't have much either. I've discovered about 1 out of a 20-30 things I try actually help me consistently, and about 1 out of a 100 help me a LOT. CEs and DMSO both fit in that latter category. Magnesium oil also helps me reduce various pain syndromes on the surface of my skin.

All the Best...

P.S. I noticed a post recently by a woman on this forum who overcame her own ME/CFS with mHBOT (Mild Hyperbaric Oxygen Therapy).​

 

[Zug]

Ibuprofen makes my Tinnitus more noticeable. If you can't be without it, why not try some simple masking technique such as placing a small water fountain near you, leaving the TV on, etc?

I feel you should talk about medication and side effects to a doctor.