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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

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

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!

 

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!

I haven’t added any new posts in a while because I had no new information. But for those of you still struggling with this problem, I now have an interesting insight that may or may not be helpful in your (and your doctors’) quest for quiet in your brain.

For those of you who don’t know, I have been struggling with the stuck music, or what I call auditory memory loops (AMLs), for going on 12 years now, ever since I went into menopause. After a solid year with multiple songs, words, and phrases constantly playing so loud I couldn’t hear my own thoughts, couldn”t sleep, and never having one minute of quiet, I thought I would literally go insane.  (And some of you have it much worse than I did!)

My solution for most of this time was to keep my hormones (progesterone and testosterone specifically) so low that the AMLs kept quiet. And for over 10 years I did not listen to the radio.

The (HUGE) downside to this was that I had not felt alive in 12 years. My creativity (I’m a writer) and my sex drive (I’m a human being) were gone completely. All my passions were gone. I could not truly feel the pleasure of a good movie or music or a visit with friends and loved ones. I knew intellectually that these things were pleasurable and I could say that I enjoyed them, but I couldn’t actually feel that enjoyment. And I hated this state. But the alternative was to feel alive and be tortured by that insane racket in my head. So I chose the state that allowed me to remain functional, even though it left me dead inside.

Throughout the years, I’ve discovered that taking the antidepressant Wellbutrin would also turn on the AMLs. Interestingly, Wellbutrin had many of the same effects on me as testosterone, including increasing my creativity and sex drive and decreasing my appetite.

But just in the past 3 months I have developed a new hormone regimen that gives me back my aliveness, my creativity and passion, without provoking the AMLs.

How my discovery might affect your individual cases, I don’t know, but here’s what I’ve got…

I had previously been taking a fairly steady low dose of both estrogen and progesterone, and that was sufficient to give me relief from menopausal symptoms and support my brain enough that I could function and do my job.

But I was curious about a certain protocol that mimics the normal 28-day cycle of hormones that would be seen in a woman of reproductive age. It is based, in part, on the fact (which I still have to confirm and understand from my doctor’s recommended textbooks) that our bodies (at least females) need a certain spike or a high enough level of estrogen in order to either make or open or sensitize our cells’ progesterone receptors.

I wondered whether my low, steady dose of E might have been too low to do whatever the E spike does to allow my body to use the P that I was taking. I wondered if some (or all) of the negative symptoms I was experiencing might be related to having a bunch of progesterone floating around in my system that wasn’t able to plug into the cells and turn on the desired actions. 

So in December of last year (2010), I started an experiment. I decided to use the same principles as the 28-day protocol, but instead I decided to do it over 2 weeks instead of 4.

Now, in the normal cycle, for the first half of the month, E sharply rises, hitting its peak on day 14, when ovulation occurs (when testosterone also peaks, causing a woman to feel more romantic in order to make a baby). After ovulation, the E drops off a bit and the ovary begins to produce a lot of P for 2 weeks. In the middle of that 2nd half of the month (around days 19-21), there’s a little extra bounce of E. After that, both E and P drop off for the rest of the month (assuming no pregnancy). Then you get your period and the cycle starts over. 

So in my mini-cycle, on Day 1 I take a double dose of E. I give that a day to get into my system, theoretically making/sensitizing P receptors. Then on Day 2, I take another dose of E to simulate the mid-cycle spike of E, and I add my dose of P for the cycle.  Around Day 6-7 I start to feel some low-E symptoms, so I add another dose of E, which simulates the little E bounce. Then I let the levels of both just drop off for the rest of the cycle.

What has happened as a result is that:

  • I have started to feel alive and creative again. My passions are back!
  • I no longer get the little rash on my face that I would get when I’d take my progesterone each week.
  • I no longer get the red, itchy allergic reaction to my estrogen patches.
  • And most important to all of you…I can now listen to music all day long and it doesn’t get stuck in my head!!!

So for you women, I might suggest that you and your doctors look at whether you are getting that E spike in your cycles. (Or if you are menopausal, you could try my HRT protocol.)  My 27-year-old daughter started having AMLs and I’ve wondered if it was because her birth control hormones had her on a relatively steady dose of E, taking away her normal E spike.

For you men, I don’t know how to leverage my discovery to help you, since although you do make estrogen,  I seriously doubt that you have anything remotely like an E spike or even a hormonal cycle of any kind. But my doctor did say that both progesterone and testosterone work better in the presence of estrogen. So maybe you and your doctors might want to consider looking at your hormone levels (estrogen progesterone and testosterone).

Normally, your doctor would think nothing of unusually low E levels in a man (if the doc even tested for E), thinking that it’s probably better if they are low. But what if your E levels are really too low to open/sensitize your P or T receptors, and your P and/or T are floating around without a home and are doing things they shouldn’t?

It is possible that my cortisol theory may still be in play here somehow. If the lack of an E spike (or a sufficient level of E) prevents P from plugging into receptors for the sex hormones, it may be that the P is then even more likely to attach to the receptors for the corticosteroids like cortisol and adrenalin and turn on the production of those hormones instead.

I will have to dig into those med school textbooks my doc recommended to find out what the actual mechanisms at work are in both men and women…assuming they are even known.

Meanwhile, I have ordered several over-the-counter hormone saliva tests. Now that I’ve settled into a hormone regimen that seems to work and is repeatable, my doc and I want to know how my unusual use of these hormone products translates into hormone levels in my system at key points in the mini-cycle.

We’re completely off the map now, charting new territory. I just hope this ends up helping some of you to stop the noise in your heads and get back to a normal life.

To peace and quiet!

Rather than make you link back to my Health and Hormones blog, I’m copying my very first post on the broken record syndrome / auditory memory loops (AMLs) phenomenon here.

 The link to the second summary of the phenomenon and my cortisol hypothesis is here: https://brokenrecordsyndrome.wordpress.com/2010/03/09/original-broken-record-syndrome-part-2/

~~~~~~~~~~~~~~~~~~~~~~~ 

Have you ever had a song stuck in your head? It’s probably happened to most of us from time to time. 

Well, imagine having short (say, 15-20 seconds) snippets of songs, phrases and words stuck in your head, going around and around and around and around 24 hours a day, 7 days a week for months or years. Yikes!

That’s what I (and at least one other person on the planet) have. I call it the “broken record syndrome” (or BR), although the monster may be more properly referred to as an “auditory imagery loop.” In any case, it goes light years beyond the normal song-stuck-in-your-head experience.

My BR started when my hormones went south as I approached menopause. At its worst, I couldn’t sleep because some annoying tune or word would cycle over and over and over in my dreams until I’d wake up in a panic as if I’d been tortured. During waking hours, these noisy memories would sometimes get so “loud,” or intrusive, that I couldn’t concentrate on my own thoughts.  

For over a year I never had one single moment of peaceful quiet, never free of that maddening racket of looping sound memories in my head, not even in my sleep. If it had continued much longer, I was sure I’d lose my mind.

Once I started hormone therapy, however, the BR quieted down, though it still comes and goes. I have found that stress (physical, mental or emotional) can bring the BR on or make it worse.

I have now met one other person who experiences this same phenomenon. Unlike, my BR though, his has been present for as long as he can remember. Fortunately, his has never gotten as bad as mine once was. We have learned that there are a number of conditions that seem related but may be very different in terms of causes and potential treatments. 

Among the conditions are:

  • Musical hallucinations – in which you believe you are hearing something coming from outside your body (as if music were actually playing somewhere nearby)
  • Palinacousis – in which you first hear a real sound, then continue to hear that sound (like an echo) after the real sound has stopped
  • Auditory imagery loop / broken record syndrome – in which a memory of a sound (musical or spoken) repeats in your head

Although BR may be effectively treated with antidepressants or anti-anxiety drugs, I’m not eager to take on their side effects. I’d rather find the cause and treat it more directly and more naturally, if possible.

My current hypothesis is that this might be related to the stress hormone cortisol. I am now looking for other people who experience the same phenomenon. If you have this or know of anyone who does, please respond to this blog.

Two New Members

One of these days I will start going back and telling the stories of each of us who have come together over this crazy affliction. For now I want to introduce the two newest members of our unfortunate group.

First there’s BRIAN.

He’s been dealing with the auditory memory loops (AMLs) for 6 years and says they are destroying his life. 

He thinks the AMLs started when he began taking antianxiety medications, mood stabilizers and antidepressants. He is not the first of us who has suspected that brain drugs may have triggered the AMLs.

His working hypothesis is that the Klonopin (benzodiazapine) has depleted his brain of neurotransmitters, especially serotonin, triggering a form of OCD (obsessive-compulsive disorder).  If that were the case, though, then anything that replaces serotonin should quiet our brains, and so far I haven’t seen any patterns indicating this it true for those who have tried SSRIs.

However, if the AMLs are related to serotonin depletion, then taking something like the supplement 5-HTP (which is what the tryptophan in meats like turkey breaks down into on its way to producing serotonin) should calm them down.

(BTW, If anybody decides to try the 5-HTP, please let me know what happens.)

For Brian, the only things that seem to help are cycling until his heart rate is very high and watching TV.

His loops seem to run in 3- to 5-second segments, unlike mine, which are usually about 15 seconds.

Our other new friend is MIMI.

She said she almost cried when she found us. I can understand…because there was nobody else out there when I started blogging about the phenomenon. Thankfully, you all have found me and we at least can share our experiences. And that’s what Mimi needed…to know she’s not alone.

Her AMLs started 2 1/2 years ago after having a partial hysterectomy. In most cases that means the uterus was removed but they left the ovaries intact to, ideally, keep them producing hormones. However, as I learned from writing my book about hormones and menopause, in about 50% of cases, the preserved ovaries shut down after surgery as a result of damage to nerves or blood vessels that support the ovaries.

If she is one of the unlucky ones who lost ovarian function after the surgery, then her story parallels mine in that her AMLs seem to have followed a dramatic drop in sex hormone levels.

Although I have my cortisol hypothesis which explains the very different effects of real and fake progesterone on the AMLs, it doesn’t explain why having all our hormones bottom out would have triggered our first episodes.  I now suspect there may also be at least one “protective” hormone whose deficiency makes us more vulnerable to the AMLs.

For Mimi, the AMLs weren’t the only problem she found herself coping with. She also started having major allergic skin reactions like hives. Lab tests showed she has Hashimoto’s disease…an autoimmune condition in which the immune system destroys the thyroid gland. 

I immediately suspected a connection to low progesterone. Progesterone is the first sex hormone we women will be deficient in, especially after 45 or after menopause or hysterectomy. And as it happens, one of progesterone’s major roles is to suppress/modulate the immune system, especially during pregnancy so our immune systems don’t attack our babies. Progesterone also supports the thyroid. So I have suggested that Mimi get her hormones tested and ask about supplementing progesterone.

The catch is that if she needs progesterone to calm down her autoimmune issues, then it is possible (according to my cortisol hypothesis) that the AMLs will get WORSE instead of better…unless we can find that “protective” hormone and raise its levels enough to prevent the music.

If she can’t take natural (bioidentical) progesterone because of the music in her head, then she may need to try synthetic progesterone, which increases the risk of breast cancer. Not a great choice.

She says she has been taking an antihistamine at bedtime for about 3 years, plus Pepcid every afternoon, and wonders if they might have had something to do with the AMLs. Tho I also take antihistamines to help me sleep, I think the more significant factor we have in common is the hormone depletion.

However, let me know if any of you also take antihistamines (like benadryl/diphenhydramine, dramamine, chlorpheniramine, zyrtec/cetirazine, etc.) or over the counter sleep aids (which also use antihistamines to make you sleepy). And if you do, did you start taking them before or after the AMLs started?

Like most of us, Mimi reports that the AMLs are worse when she is stressed. When she’s talking or reading or otherwise occupied, she doesn’t have them…which is fortunate.  She doesn’t have them when she dreams, but on nights when she isn’t dreaming the AMLs seem to fill the void.

Like most of us, she reports that the songs can come from a long time in the past, or may be tunes she just recently heard.

And, as we’ve all come to expect, her doctors don’t really know what to do. She has an appointment with another endocrinologist for her thyroid issues and will take the info from this blog to see if any of it might help the doctor figure this out.

As always, we hope both of new friends find solutions that work and give them the quiet they so desperately seek.

Have a peaceful day,

Pat