Stuck Music Progresses into Full OCD

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!

A New Twist in the Mystery

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!

Original Broken Record Post

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: http://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

AMLs and Natural OCD Treatments

I just finished reading a doctor’s book about natural remedies. In it he covers the issue of OCD (obsessive-compulsive disorder).

For what it’s worth to you all, he suggests taking 5-HTP (an amino acid precursor to the neurotransmitter serotonin) and inositol (a member of the B vitamin family) to help reduce OCD symptoms.

If the AMLs are, as my neurologist and others believe, a form of OCD, then maybe these supplements will help some of us.

This doctor recommends a high dose of inositol (18 grams per day), which you’d have to mix into food or drinks by the teaspoon. But I have found reports of studies showing no side effects of inositol in those taking high doses successfully to treat anxiety, OCD, panic disorder, depression and agoraphobia.

He does not specify the dose of 5-HTP, but I have seen this substance pop up as a solution to other problems. The dosage typically runs between 50 and 100 mg (taken in the evening when used to promote sleep). It appears that 5-HTP is widely used in Europe to aid sleep, suppress the appetite and reduce depression. 

On a WebMD discussion thread, I found that most users experienced a reduction in their symptoms (OCD, insomnia, depression, fibromyalgia, cravings for cigarettes/food). However, one woman who took 50 mg of 5-HTP experienced some side effects she terms “scary” (tingling rush, sweating palms, lightheadedness) that peaked after about 5 minutes and left her feeling weird into the next day. She admitted it stopped her food cravings, but the side effects were unacceptable.

Being the one person who always overreacts to drugs and other substances or gets side effects nobody ever gets, I am always extremely cautious when taking something new. I start at the lowest dose possible to see how it will affect me. If the low dose of 50 mg 5-HTP gave this one woman so much trouble, I will probably break open the 50 mg capsule (if I even try the 5-HTP) and will take only half (25 mg) for my first dose…maybe even less.

Just as a reminder, be sure to check with your doctor before experimenting with any possible solutions.

And if you do try either or both of these solutions, please let us know how they work for you. 

Wishing you peace and quiet.

Pat

Parasites & histamine: Could they be a factor?

In case you haven’t seen the recent comments from a fellow sufferer, we may now have a few new leads to pursue in our search for cause and cure for the broken record thing (or AMLs/auditory memory loops).

Like me, J discovered that cortisol and stress seemed to have an effect on the AMLs, making them worse.

But unlike any of the rest of us (that I know of) J also made a connection between his gut problems and the AMLs. Turns out he had a couple of parasites that had been causing IBS symptoms.

Now, I have assumed all along that it can’t be cortisol alone, since most of us have had stressful times without getting AMLs. My assumption is that something must change us at some point to make us susceptible to the AML effects of cortisol. But I didn’t know what, since each of us has come into this problem through different doors.

In my case it was hormonal changes at menopause. For another sufferer it came after the birth of her second baby. For still others it starts after a traumatic period in their lives or after taking an antidepressant, or for no apparent reason at all. And then there’s the 6-year-old boy who may have had it all his life.

So here we have J who says his AMLs started after he’d begun having gut issues. He also noticed that he had allergy symptoms/runny nose when the AMLs were worse, suggesting histamine was involved. And when he takes antihistamines (and large doses of vitamin C and magnesium) the symptoms ease up.

I’ve just recently learned that histamine is responsible for stimulating the release of stomach acid to digest food, as well as creating those inflammatory reactions to allergens we’re more familiar with. I don’t know how to connect the dots yet, but this may be meaningful.

J finally learned that his gut problems were caused by a couple of parasites:  Blastocystis Hominis and Dientamoeba Fragilis. And when he completed treatment to get rid of them, the AMLs subsided. It’s not clear from his comment whether the AMLs completely went away.

He does say that he believes the parasites were not the direct trigger for the AMLs, but rather the stress of the infection and his body’s reaction to the parasites may have been the actual trigger.  This may fit in with those whose AMLs have started after some form of traumatic/stressful event.

As it turns out, I’d had some gut tests myself a few years back and I hoped the parasite angle might be a fresh clue in this mystery. But when I checked my test results I found that I did not have any parasites. So I’m back to the assumption that it may not be the specific triggering event that matters, only that our bodies respond to a variety of events in the same way.

So we may or may not not have a new clue, but perhaps a few more tools for fighting this madness: antihistamines, high doses of vitamin C and magnesium, for dealing with the histamine/allergy issues…plus the Relora and phosphatidyl serine to suppress cortisol.

I’ll do more research and hope to hear more from J.

Wishing you all peace…and quiet.   -Pat

What do we all have in common? Trauma?

Someone who found this blog asked if our AMLs started after we experienced some kind of trauma. As far as I know, trauma is not a common element in this phenomenon.

So here’s the question: Can any of you recall having a fall or a whack on the head or any other kind of physical trauma shortly before your AMLs started?

It’s not true for me. Mine started when my hormones went south. If there was some kind of trauma during that time, it was so minor (or so severe!) that I don’t remember it.

For me, the chemical hypothesis makes much more sense. Though I can’t rule out the possibility that I may have bumped my head, and that some tiny bit of damage was done that then allowed cortisol to have an effect it had never had on me before. However, all my brain studies (MRIs EEG, CTs) found no abnormalities.

How about the rest of you? Can you recall any traumas that might have preceded your AMLs?