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Posts Tagged ‘stuck music’

I guess there’s a price to pay for getting too cocky. I’ve mentioned several times that I seem to be the only one among us who can turn the AMLs (auditory memory loops) on and off. Well, I suppose to remind me of the horrors all of you are still suffering, I recently had a relapse and had the opportunity to refresh my memory…over and over and over and… well you know.

This relapse happened in the wake of conditions that may have directly or indirectly contributed to the problem.

1.  I had just finally recovered from a 2-month vertigo episode, the worse I’ve ever had. This condition might not have triggered the AMLs, but it certainly stressed me out, pumping cortisol into my system for two months.

2.  During the vertigo episode I took Valium for a couple of days. (It and other drugs like it can stabilize the inner ear’s balance centers.) But when I realized it was making me nauseated, I quit. Toward the end of the episode I took Xanax (related to Valium) every night to help suppress the spinning in my sleep. I worried about taking these drugs because so many of us only started the AMLs after taking SSRIs and other brain drugs.

3. In the last 2 weeks of the vertigo I had a short-fuse video project. Not only was I stressed (producing cortisol), but I was listening to the same 3 short songs over and over again for a week as we edited the video together.

4. I had cut back on the phosphatidyl serine (PS) that reduces cortisol and provides healthy fats to the brain.

Having heard your stories and thought more about the OCD (obsessive-compulsive disorder) connection, I paid closer attention to what I was feeling when the AMLs came back this time.

  • I was physically antsy, a feeling I know I get when either my potassium is low or when my hormones are messed up.
  • I felt as if there was an “openness” or a gaping hole in the middle of my brain, or that there was a thinness of the wall between that open part in the center of my brain and everything else.
  • That hole was like an open sore that was exposed to anything in my environment that might “infect” it and get stuck there.  I felt totally vulnerable to falling into other forms of OCD, not just the music. (Some of you have progressed into classic OCD.)
  • I also noticed that I was waking up with the crazy repetitive dreams (making a list, recalling names) and/or the music, all happening around 3 am…the classic, low estrogen wake-up time. I also had other low E symptoms, like heatwaves, itchy-crawly scalp and ears, and stupid brain.
  • I had trouble going out to restaurants and places that played music. I realized that my awareness of music wasn’t just me being cautious about music around me. No, the music literally seemed to attach itself to me more aggressively.  I was having lunch with a friend and had to step outside when a certain obnoxious song came on. When I got back, he said he hadn’t even noticed the music.  He said “You’ve got to do something about your hearing.” “Like what” I asked. “Like…go deaf,” he said.  It made me laugh. But the point is that his brain was able to tune it out, as mine normally would. Instead, for me it seemed as if not only was my brain open but it was aggressively seeking out and sucking the music in. And, all jokes aside, my going deaf would not have stopped the AMLs because this is not about “hearing;” it’s about replaying things stored in the auditory memory…even things we’ve never heard with our ears.

So I’ll cut to the chase and tell you that I finally suspected my estrogen patches weren’t working and I hoped and prayed this was also why the AMLs had come back with a vengeance. I have had problems with defective patches and/or possible permeability issues with the area of skin where I stuck my patches. So I put more patches on. And for a couple of days, the AMLs would go away.

I have finally ended that screwed-up hormone cycle and have started over with new patches in a new spot and have had no further problems with the AMLs.

HormonePathways12

Now, it would be easy to think you just need more estrogen and the AMLs will go away. But it’s not that simple.

Estrogen (at least in theory) merely creates receptors so the progesterone (P) in your system can break down into the sex hormones instead of adrenal hormones like cortisol.

But what about men with AMLs? Are they low in E relative to their P? We have no data to tell us one way or the other.

However, one new friend of the blog, a 20-year-old male, has just had a ton of lab tests done recently (including sex hormones and cortisol) and promises to send me a copy of the results. I may be able to spot nuances in the ratios or levels that doctors aren’t typically looking for.

Another new friend of the blog is a pregnant woman who began having the AMLs in her 6th month.

Both of their stories present very strong evidence of hormonal components associated with the AML/OCD symptoms. His initial labs, for example, say he’s got normal levels of a key hormone, but other symptoms tell me he is severely low. I hope our pregnant friend can also send lab results so I can see if perhaps her hormone ratios might be off, with too little E relative to the amount of P being made by the placenta.

At any rate, I am back to normal for now, having relived the terror of wondering whether I’d ever get that madness out of my head and be normal again. And my empathy has been renewed for all of you who are still suffering.

Curiously, I noticed a song in my head yesterday. But this felt different. It felt as if it was in the front of my head, instead of in that gaping, sucking hole in the center. (In fact I don’t feel that hole is there at all.) The song did not feel sticky or disruptive. It didn’t yell. It was just a small, well-behaved, pleasant memory floating around harmlessly in the stream of lots of other quiet thoughts.

I wish this same state of tranquility for all of you.

Pat

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This is to clear up any possible confusion about prednisone and AMLs that my previous posts may have created. Prednisone is NOT a potential solution to this affliction.

My previous posts were about my concerns with taking prednisone (because it is so closely related to cortisol) and that it might reawaken the music I’d worked so hard to get rid of.  And although I did have music stuck in my head after the first day’s dose, it went away and didn’t come back for the remaining 5 days I took the steroids. So my fears about prednisone seem to have been premature.

Meanwhile, there may be a safe new option to try coming soon. I am just waiting for the article to become available online and I will write about it here, probably within the next few weeks.

Stay tuned,

Pat

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Just a quick note to say that after experiencing a recurrence of music in my head after taking prednisone on day for my vertigo, the music went away and never returned.

At least it did not recur while I was taking the prednisone. I continued taking the prednisone as a taper for a total of 6 days (3 pills a day for days 1 through 4, then 2 pills the 5th day and 1 pill the 6th day).

However, about a week later I woke up in the middle of the night with the worse spinning sensation I’ve had. I must have rolled over too fast or in the wrong way in my sleep. But the spinning scared me, made me wonder if this would ever go away, would I ever be normal and functional again. And I presume my panic pumped surges of cortisol into my system and…sure enough…I started hearing the music again.

So the hypothesis still holds for cortisol’s role in the AMLs/broken record/stuck music phenomenon. But, for my one experience at least, it looks like prednisone, the synthetic cousin to cortisol, does not have the same effect.

In fact, for the remaining 5 days I was taking the prednisone and for 2 days afterwards, I felt fabulous. Still had the dizziness, but otherwise felt great

I wouldn’t want any of you to avoid taking prednisone, if you needed it, for fear it would increase the music in your head. But if you do take it and if it affects your AMLs (positively or negatively), please let us know.

Wishing you peace and quiet.

Pat

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I’ve been dealing with a vertigo episode for going on a month now and in trying prednisone (aka, “steroids”) for a couple of days, I’ve started getting the auditory memory loops/AMLs (aka, stuck music, broken record syndrome, ear worms, whatever you want to call it) again.

This really shouldn’t come as a surprise to those who know there is some connection between the AMLs and cortisol (and stress that releases cortisol). Prednisone is merely a synthetic drug that mimics some of the properties of cortisol.

In particular, it is used to reduce inflammation. In my case, I’m trying to reduce the inflammation in my head and various ear mechanisms that causes a buildup of fluid and then triggers the vertigo, or dizziness and spinning sensation.

So it only seems logical that this synthetic cousin of cortisol might also bring back the stuck music.

Well I started taking the prednisone yesterday morning, and by bedtime, I was too energized to sleep. When I did finally get to sleep, I had manic, OCD-kinds of repetitive dreams, processing the same form over and over. Then I woke around 3:00 am and had two songs stuck in my head. This hasn’t happened in a very long time, at least not since I got my hormones under control. But I was finally able to get to sleep and had no music in my head this morning.

I will be curious to see if I have a similar experience of the music coming back tonight, though it should start earlier since I took my dose of prednisone 4 hours earlier today.

As with so many things, I would think that this clue (prednisone, a cortisol-like substance bringing on the AMLs again) would help a dedicated researcher figure out at least the hormonal part of the equation. If only we could find such a rare creature. Unicorns seem more plentiful.

The last time I had a vertigo episode, coincidentally I was also having severe issues with the AMLs. However, that time I had been taking Wellbutrin (bupropion) an antidepressant, and I think that was the trigger for the AMLs.

Still this is an orphan syndrome: nobody cares enough to research it. I’ve collected a list of 50 some sufferers who have found my blog and who desperately need help but are finding none. We have clues out the wazoo (I’m pretty sure it’s connected to the thighbone), but we have no one to tell our stories to. No one to give our clues to. No one who will take our data, formulate a hypothesis, perform some tests, and come up with a more informed and meaningful course of treatment than just giving shrugs or throwing brain altering drugs at us hoping they don’t make it worse.

I have thought about writing a book about this . Maybe a book would get somebody’s attention. But: (a) I don’t yet have the “happy ending” I’d like to have for this story, and (b) I’m a published author, and know that a great many books go unnoticed without a lot of publicity or the endorsement of celebrities.

So I keep watching and listening for any possible connections I might find to researchers who have: (a) expertise in the brain and biochemistry, (b) access to both brain imaging equipment and lab tests, and (c) the desire to help us.

And if you know of anyone who fits that description (or even anyone who might know someone), please let me know. I will share everything I know from my own experiences and those of other sufferers. I will subject myself to tests, since I can turn the AMLs on and off.

We really have to get smarter about this. And to do so we need to find somebody who is willing and able to help us.

Meanwhile, here’s wishing you all blissful peace and quiet.

Pat

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A recent commenter to this blog asked if all the people who find this site are brain-dead. Well, the fact is that from my experience and from the stories others tell…yes, many of us may, in fact be mentally impaired by the music that runs constantly in our heads.

One fellow suffer with whom I correspond, has told me that even the simplest suggestions I have made are often too hard for her to understand. I may write up suggestions and snapshots of the common experiences for her doctors so she can just print my emails and take them to her appointments, rather than try to remember what I’ve said.

For me, my brain-deadness came from a combination of factors.

One: Lack of sleep. I went through one solid year in which I experienced not one second of quiet. Even in my sleep and dreams the music played on like a kind of maniacal torture. I’d sometimes awaken in a frenzy with one 5-15-second music track hitting me over and over and over like a hammer.

Two: Too loud to hear my own thoughts. At its worst, the music was so loud in my head that when I tried to think–when I tried to remember something, when I tried to craft a new sentence or process some data–I could only get part of the way through the process before the profoundly distracting music would pull me off track. In this respect, the AMLs (auditory memory loops) were like hyperactive children, never letting the parent have a moment’s peace, constantly demanding attention.

Three: It can make you crazy (really). For me this was worse than being at, say, a parade or rock concert, because at least there the music continues on through the whole song with different melodies and different words, and then changes to a new song after a few minutes. The music in my head played only the same brief 10-second (average) snippet. If you figure this went on 24 hours a day, that’s over 8600 repetitions of the same sequence. Every day. For a year. (And some people have had this problem for many years, though few seem to have music that invades their dreams, as far as I know.) By the time I went to the doctor seeking help, I was on the verge of either a mental breakdown or suicide.

So are many of us truly brain-dead? Maybe not. At least not any more than we would be if reliving the same 10 seconds of time managing 200 kindergartners at a Mardi Gras parade over and over, with no sleep.

But does this massive distraction keep our brains from performing at their best? Absolutely.

And then there’s the cortisol factor. If indeed these experiences are fueled in part by cortisol, then that hormone is coursing through our bodies consuming any cells if finds, believing we are in dire peril and need energy at all costs. Cortisol doesn’t care if it burns fat cells or brain cells. All it cares about is liberating fuel to keep your body running to escape the danger. Unfortunately, the danger is coming from inside us, from all the real and perceived emergencies that stress us out and shoot cortisol and adrenalin into our bodies.

I wish I had some news to present here. The best I can do is recommend we all do what we can to reduce stress. 

Meanwhile, I’m scheduled to attend a lecture at a brain institute and hope to at least make connections to researchers who might be interested in studying this phenomenon. Cross your fingers!

 

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This is not good news for one of our most troubled sufferers.  A young woman in her late 20s, whom I will call “X,” has struggled with the stuck music approximately since the birth of her second child.  Now a distressing new symptom has popped up.

Over the years I have known her through our correspondence, I have seen her mental capacity decline because of the incessant songs playing in her head and the lack of sleep this causes. She has been to numerous doctors, none of whom have the first clue as to how to treat this phenomenon.

We did determine (through a home saliva test)  that her cortisol levels were elevated. But she cannot take the Relora that can help lower cortisol because it made her too groggy. She is apparently hypersensitive to all substances.

Now she has developed a symptom that clearly seems to be a form of obsessive compulsive disorder (OCD). Most neurologists consider the stuck music (also called “ear worms,”  “broken record syndrome,” “auditory memory loops/AMLs,” or “musical hallucinations”) to be a form of OCD.

They may be right, though I have been able to control mine by manipulating my hormone replacement therapy, which suggests that it may be important to find out what impact hormone levels have on OCD in general.

The symptom that X has now developed involves the compulsion to breathe into her hand to smell her breath. I haven’t heard of any other AML sufferers developing additional OCD symptoms but I suspect it is quite possible and they may simply have not made the connection or bothered to mention them.

If any of you have more traditional obsessions or compulsions in conjunction with your stuck music/AMLs, let us know.

And if you’ve tried drugs (or any other solutions) for OCD and have found relief, please share with us so that perhaps people like X can find some peace.

For me, the holidays have always been torturous because of all the music played everywhere you go. Thanks to my new hormone regimen started around this time last year, this is the first year in 12 that I haven’t been plagued with the holiday music being stuck in my head.   I earnestly wish the same peace for all of you in the new year.

Happy holidays to you all!

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