An MRI Changed My Life

Hi all,

I am Sasha and for 2 and a half weeks, a member of your "precious" club. Your Forum gave me quite some support by just reading it, some of your members are very positive and supportive and I have a huge amount of respect for everyone here, who is coping with our "symptoms" for such a long time.

Not sure if I would have the strength for that, especially after the setback yesterday.

But lets get started from the beginning.

I have been a DJ and music lover for more than 20 years now, had my own club and event series, played to lots of happy people and always took care of my hearing. I realized that protection is important, I never went into the reds and always let my ears rest after an event.
My hearing was pretty much that of a baby, they could not trace down any loss anywhere, even in the frequencies 8khz+. You could call that "perfect hearing" if you know what I mean by that expression. Yes, I noticed the differences between various mp3 formats and wav files could track down every single instrument and sound and so on.

4 Years ago, the doctors found a tumor in my head, suprisingly something two other DJ friends also had. Said tumor, has not grown one bit, nor has it affected my hearing or general life. You could say, I was raving on a good wave, with lots of happiness. That, however, all changed when I had my routine check at the hospital 17 days ago.

One of the nurses put the headphones on, which slightly removed my in ear plug, that I always had during MRIs. While the sounds inside the MRI were not "too loud", so that it hurt, I felt it was louder in my right ear than in my left and I became worried. 15 Minutes later, I came out of the MRI and all of a sudden my life was different. No changes to the tumor, but my right ear seemed damaged.

I had a strange feel in my ear, many of you described it as a fullness, so that I went home, always protecting my ear from noises. Once home, I realized how I was feeling contractions and noise, next to my right eye, kind of moving downwards into my ear. Of course I panicked, started protecting my ear even more and tried to sleep.
Once I woke up, I was still in distress, I was so afraid my ear got damaged, as I felt that i was hearing distorted things, however, not the stuff you hear coming from the outside, but more of sounds in the inside. I was hearing fine, yet I was not.

I started reading up on forums about how MRI´s are known to cause Tinnitus and boom, all of a sudden I heard about that illness for the first time and was shocked. I blamed myself for going to the MRI; blamed the nurse and me for not stopping the procedure immediately.

My situation became more problematic, as all of a sudden I noticed a very loud never stopping sound in my ear, it was kind of like that of a jet taking off.

Sleeping became impossible, the jet was driving me nuts (loudest), while I still had that distorted high pitched sounds, next to my right eye, causing contractions that lead to my inner ear.


After it did not get better, I started taking prednisolon, it seemed to help somehow, even though the dosage was just 40mg and later 60mg. When I checked in to the doctor 6 days later, the sounds had improved okish, so that while being in her office, I was feeling better and might have not played the victim card hard enough. She said, I should relax and wait and see how it goes, while keeping prednisolon, but she also noted that without hearing loss, there is usually no need for it.

I still kept taking it, my hearing is so important, my job and life depends on it, so i did not care about side effects like gaining weight or so. Unfortunately, was my situation very unstable in the following days. I could wake up with loud sounds or in total silence, it was unpredictable and unexplainable to me. After another sleepless night, i checked in with my regular doctor who immediately said, that the procedure I did is to be expected, but that we now must move on with a higher dosage of prednosolin.

He gave me 150/100/100/100/50.

He also did a hearing test, compared it to my old results and it was negative. No hearing loss and if I walk the street (always protected), I hear everything just fine, but I notice how the contractions become more noticable whenever I do more than just laying down, always as if something in my body was causing it. When I took the 150mg, I felt so much relief immediately on Monday, that I could sleep for 2 hours straight. I noticed how the sounds became quieter and quieter, within 30 minutes, it was a good feeling! Sadly, two hours later it was back. That being said, getting such a strong reaction, gave me hope and I got a lot of extra supplements to help me through as well. I always took care of these things, sport is important so is my fitness and general life. No smoking, alkohol or drugs.

Except for one, i took an antibiotic for 21 days, it´s low dosage should not cause any harm, but the possibility still existed but they had no statistics for it. I asked three doctors about it, the general idea about "SKID 50" was, that it might in very rare occasions be otoxic, but it should be out of the system with three - four weeks. I only took half of the recommended dosage btw. I immediately stopped the medication 4 days after the incident.
I just don´t want to give up or waste my chances by focusing on just one path therefore I am giving you everything I have or know.

After the increased predno dosage, I had moments of silence, just some soft white noise in my ears, but that is normal for DJ´s and seems to also have something to do with regeneration, blood flow (a DJ doctor once told me that). Now the thing is, I also had these moments of silence during the first week, prior to the increased dosage of prednosolin, but they did not last that long, quite often were removed by me checking for sounds or moving around in bed and the very loud jet was always there at night.
Said jet, was now gone for 3 days this week and just a slight fan sound was in the background, almost non noticable and kind of triggered by my tubes, I could make it louder and quieter by yawning for instance.


On Thursday this week, I took 200mg, I did overdose accidently, but I felt better than ever before, it was like a positive spike by an accident, the doctor said, that this is ok, but that we will now wait with further meds, unless it comes back. For this purpose, he gave me 500mg, that I would use in either 200,200,100 or the older 150,100.... if it comes back.
On Friday I had a lot of back pain, did several excercises, to relax my muscles and it got away.

I am also using a teeth protection since a week, ordered it online, as I believe my tube issues are related to me pressing teeth at night.

Anyways,

As following the doctors advice, I took no predno on Friday, but in the morning I did notice a few setbacks already, a stiff neck and the contractions / high pitched distorted sounds became more visible again as always when I become more active since the incident (almost 24 hours since my last dosage). It´s almost as if my body triggers something and it is always combined with the contractions next to my right eye, half height to my ear, leading into it. As if I would cramp up or something. I know there is an arteria, I also noticed that this condidition improves by taking vitamins, glycin and arigin supplements. I can´t say it, but to me that is a procedure that I have an influence on, but I dont fully understand it yet.

The jet still wasn´t back though, so my doctor and I decided to take the mentioned break from predno as planned and see how it goes next. I was ok with that, after all I felt doing good and believed it would only take some more time to fully restore or heal up what was broken.
Now the thing is, during the afternoon, I noticed how these contractions became more and more noticable, including the distorted sound, less by sitting down, more by walking around. I was still trying to protect my ear, like always, but when I tried to do something on my pc in the evening, the jet all of a sudden came back. I had to turn the PC off and it settled down again. My fans are noisy, I lowered that volume a lot in the past 2 weeks, by getting quieter ones, but I don´t know, I still feel that there is a connection. When I am on my laptop, I dont have that many issues, but then again, I was on the PC just fine as well, during higher predno dosages.

When I went to bed, I had the jet back in my ear, so I decided to take 60mg prednosolin and found relief again, almost immediately. I slept for 3 hours, woke up had to pee and fell asleep again until 6. It was the longest time I have slept a night since the incident, even though I had the huge setback just hours ago and the bigger improvements with the higher dosage this week.

So here is the thing,

I have no visible hearing loss even above 8khz which is often not checked by the doctors. I have no audible loss either, by just hearing sounds, it all sounds okish, except for the distortion, that however, is not the sound from the outside that is distorted, but it´s inside, right next to my eye, half way to my ear and not triggered by the sound itself, I believe. It´s me thinking about it and boom, something triggers. It´s kind of the sound of a "fax" or old "router sound" or if you print something. I noticed this first, shortly after the MRI, long before the jet sound came up, it was the first symptom.

The medics obviously work on me and I will now take them over the weekend again, to see if it was a mistake to stop with them so early, but I am of course super worried now, as there are so many horror stories about this being permanent.
But if it´s permanent, then why do I get moments of silence from time to time? They are rare, right now I have a slight jet in my ear again, will take my dosage to lunch and see what happens, but it seems to me as not all hope is lost yet, if I get a reaction.

It´s quite funny that I make this post now instead of the success story post, that I wanted to make in a few weeks, I felt really good prior to yesterday afternoon, still worried but better, now all that has changed, was it because I did not take a dosage on friday? My doctor said, it stays in your blood for 10 days, but if it does, then why the setback?

You see I am a bit clueless and worried, forums in my native language have only negativity, so I try to avoid them and therefore came here.


Maybe you guys have heard about something similar in the past, if so, it would be amazing if you could help me through this.

Thanks,

Sasha!

 

Newcomers tend to be ignorant about what caused their tinnitus, they don't realize ENTs aren't following research. Everything scientific I post will be cited with studies.

Research suggest tinnitus is caused by hearing loss and is similar to phantom limb syndrome in which amputee's feel a lost limb, you feel lost hearing.



Research cited:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208401/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921399/
http://www.jneurosci.org/content/22/6/2383


Hearing loss outside of human speech ranges is not tested on tonal audiograms, even frequencies above 8 kHz don't show the full picture. Hearing loss in background noise (like complex music) is not the same thing as hearing loss in quiet and soft noises. Complex music will be the first thing to be effected by "hidden hearing loss" not human speech range.

http://hyperacusisfocus.org/innerear/





Research cited:
https://www.sciencedirect.com/science/article/pii/S0378595516302507

 

Perhaps the MRI is the straw the broke the camel's back. 20 years of DJ'ing and "music lover" (which I interpret to mean that you've been keeping your ears busy listening to music) isn't super kind to ears, even if you are on the diligent side of protecting.

To me that's much more likely than "stress". Your damage may be of the kind that isn't detected by our regular testing procedures (hearing tests, etc).

Consider giving your ears a good rest for a while.

Good luck!

 

Ears take forever to heal. Those moments of silence should gradually be getting longer and longer. In 3-24 months there is a good chance that you will either hear silence again, or get to the "can hear it only in quiet rooms" stage. Just make sure to not get any secondary traumas.

Check out
https://www.tinnitustalk.com/thread...eone-else-who-has-tinnitus.26850/#post-307822

 

Yes, I am quite sure there was damage done, I would never deny that, even if the doctors cant find it, nor can I, I did run some tests myself, no difference between both ears.

I refuse to run more tests for now though, as I am afraid it could hurt me more than it would benefit.

As for my music, I was incredible protective, never let the sound get into the higher DB ranges, I always watched TV in a way, others couldn´t understand a word in, on phone I was asked to talk louder, as I was too quiet and so on. I always took a month rest after each festival I played.

Not saying something might have happened still, but I kind of believe that hearing can restore itself, how else can we hear for 100 years or more. My big hope is indeed that it will all go away, I have been reading a lot about all of this, also the links above by the first poster, I just can´t accept that its over now, I do have moments of silence sometimes, so I just believe.

 

Small update about today.

The 200mg seem to have helped me quite a bit, I was just eating and I had tiny seconds when the annoying horn sound was gone. I had to look for it, to find it again, no comparison to yesterday, when I did not take the meds.

The pulsating, electified sound next to my right eye is very soft, not as wild as yesterday too, the contractions I don´t notice with my sound protection on. Maybe that is some type of nerval issue, but maybe it also has other reasons, as the ear seems to be quite big and we do have cells in different parts of it. Said sound however, is not permanent, its flickering like light.

It is quite fascinating, but also depressing if you notice how the horn sound / fan becomes more quiet and quiet and quiet, you can follow its procedure, but then it´s still there or comes back. I protect my right ear still, the left I only use sometimes and it calms me down a lot.

Maybe it truly helps to take the meds, while drinking a lot and resting the ears. But I am scared as hell, due all the horror stories I read. I also feel that you guys must be in an even harder part of the world with your sounds, as some of you may never find relief, which seems like total hell to me.

If I ever get out of this mess, you can be sure to get all my support, financially and physicially.

 

Thank you, I saw many of your posts and always loved your positivity, especially if we consider that you are most likely in a much worse situation than many of us.

Keep that attitude alive, I strongly believe that there is god and he will not let this unnoticed.

 

I am actually a pessimistic, negative person. My avatar reflects my personality. I have been reading this forum for 26 months now, and I am seeing some patterns. Many people experience fading, and this is why I am optimistic regarding your case.

 

@SashaG you will be fine. This is new to you and it is a shock, but with time things will get better. Consider taking NAC for some weeks, and Magnesium, these two are things with scientific evidence.

MRIs are very loud, you are a music fan and everything must have accumulated, it is the case for some of us. I think you should remain optimistic, you have taken action soon and it will help and you sometimes hear it loud and sometimes low, this is a good sign when tinnitus fluctuates. Things will improve and it seems you may only hear it in silent rooms which is ok, or maybe even complete remission.

For now take what the ENT told you, NAC, Magnesium, and take it easy, you are in a fight or flight response and will become obsessed with this, the faster you get through this stage and start to occupy yourself with other activitities, the better your recovery will be. Stay confident and optimistic.

You are also fortunate, many companies are now launching treatments for tinnitus.

 

It was kind of hard for me to get the timeline in my head.

Can you give me a breakdown of what the medication you took was, for how long and how much?

 

I have been taking Magnesium, curcum and other supplements for years now. Also zink and other stuff, its been like that all my life, as I did a lot of sports too.

My T faded slowly over the past week, so that indeed it was only there when I was in total silence or when I was raising my heart rate / activity level.
I am unsure why it came back yesterday afternoon, but it also was the first day without medication, as we wanted to wait a week and see how it goes from there. Now on meds, it seems better again, but I only have meds for two more days, I am scared to not get any further, I had a lot now, still low compared to some doses of several hundred I saw online...

I read about fluctuating T and that it seems to be a positive sign, I feel and notice how it goes more into the background at times, I have to focus on it, writing these lines now, it feels very mild, but the night will soon come and I am scared of that part a lot. I am in general scared to do something wrong, it´s a tricky situation and you guys who cope with all of that, deserve so much respect and shoulder clapping, you are an inspiration for us newcomes.

 

My night was quite calm, no big sounds appeared just some white noise with a very distance fireworker car, I hear that for many years as there is a station nearby, not sure why the T has now the sound of it.

Overall, 6 hours of sleep with one hour interruption was good. I will see if taking the meds today, will improve that further. That the T can go from nightmarish to acceptable in 1 day, is quite suprising to me. I hope it keeps improving, still not sure why thursday was equally fine and friday a nightmare though, I only went to the doc, turned the PC on and did not use the hearing protection as much (just the in ear plugs)- That being said, it was the first day without prednisolon, which seems to have a big impact overall, as it makes everything so much quieter.

I also noticed how much I press my teeth at night, my bite protection did a lot of work over the past 8 hours.

 

I have been taking curcum, zink and other supplements all my life, at least since I started with a very busy lifestyle. So many of them are not new for me.

As for the medication, i started taking Prednisolon 40mg and later 60 mg daily, 4 days after the sounds appeared. I did not notice much, but it was weekend and all I could do.

After my first doctor only gave me Ginko, I added this and kept the routine going with low dosage of prednosolin. Entering my second week of T, I went to my regular doctor and he gave me 500mg, that I was supposed to split through 5 days. I started with 150, followed by 100. On the 4th day, I accidently overdosed and took 200, but it seemed to have a major impact on my situation, as I was feeling a lot better.

When I took the meds, I could almost always feel relief within the next hour, the loud horn became more quiet, the high pitched sounds appeared less often next to my right eye.

On friday, I decided to not continue with the meds, as my doctor felt it was time to "wait and see". He still gave me 500mg as an emergency over the weekend, but I did not take it before Saturday, starting with 200 mg again. I only took it, as on friday when I did not take them, my T became so loud that I was close to call the ambulance. It was extreme and I cried for hours, then I took 60 mg that I had left and it became quieter again.

I do not know why, but I do know it helps me to take Prednisolon.

 

Interesting.

I don’t know much about prednisone so I can’t really comment on it. Maybe there is another ailment going on besides noise traumas?

 

My doctor said, that stress and noise can cause some inner ear reaction, that Prednisolone is able to fix. There is a guy called "Stennerd" who invented a day by day routine, but it's usually taken for heavy hearing loss, which is not that obvious in my case. I never felt I hear worse, but my ear felt blocked and strange, like with the EST issue that I have.

A few observations today.

If I sit in my living room, I often have moments when the sounds are truly gone. If I lay in bed, they come back, not too loud, but there seems to be a pattern. While I was in the MRI and it was loud and stressful, maybe there is also an issue with my neck or jaw system. When I had the big setback last Friday, I had a lot of neck pain in the morning, it was very stiff.

Maybe the MRI kind of woke something up, I know I was a bit "crippled" while inside, maybe the blood flow got blocked, as the sounds came days later, I only had muscle contractions first, with said weird feel in the ear.

A friend of my my mom, also had this happen to him. He said, it took him 6 weeks to get rid of the sounds, he only took Ginkgo and an injection.

 

I wanted to give a review of my past week.

Last Thursday, I was feeling very good and already thought about a "it's gone" post, here at the forum. On the following day, at the evening, the sounds came back badly and I cried for 2 days.

Today, a week later I can say that my very first sympton from 3 and a half weeks ago, directly after the MRI, has gone down 90%. I almost never notice it, it seems like history. I am talking of the high frequency pulsating sound next to my right ear. It has definitely improved a lot, so much that it's no longer bothering me even if it shows up once in a while.

Unfortunately, the second symptom, the tinnitus which is an alarm bell that changes in attack and loudness, is still there. It can completely go away while I sit in my living room, wearing my noise protection headphones, but it always comes back later.

I tried to find a pattern for it, as I said many times, but I seem to fail. Sometimes it seems that liquid helps, or vitamins and curcumin, but do they really? Often after drinking a glass of b12 supplements, the sound slows down, but this could also be because I sit down and relax.

In a few days, my prednisolone days are over, we are decreasing the dosage now each day and next week, something else will step in to help me improve.

Tinnitus is incredibly hard to understand for me, especially since the sound that's left, is much lower in frequency than the one that has now faded 90%. You would think it should be the other way around...

I also noticed that if I take my noise protection headphones off for 20 minutes or so, the tinnitus seems to become softer as well, almost as if my brain is learning new sounds and therefore kicking the alarm bell out of my system. There is so much we humans don't know or understand and it's driving me insane.

I want to do something, but I feel crippled in what I can, not even knowing what I did right or wrong and where I might be today, if I had acted differently in the first week or last Friday, when I turned on my PC in the evening, which was a mistake I believe.

The forum here has brought me through the hard weekend last week and I want to thank everyone for that.

@Doll94, @Bill Bauer and everyone else, sorry if I don´t have your names here, but I know who you guys are and I am grateful for everything.

My worries are still there, I am scared that the alarm bell stays, but if my first symptom has improved in 3 and a half weeks, maybe the alarm bell will do so too.

 

Yes! It is called the Stennert-scheme.
There is a German article in HNO-Nachrichten (ENT Messages'), a journal for ENT specialists in which the doses are written. See page 40. It starts wit a dose of 200-250 mg...
My ENT-doctor finds this a very high dose. Because when you dose that high your own body stops producing similar substances. His advice: start for 3 days with 60 mg and then taper it every day with 10 mg. When at 10 mg then just another 4 days of 10 mg.

 

This is true for me. I feel like I am slowly inching through a marathon but my tinnitus is gradually getting better. My curcumin addiction seems to be helping the process along.