NOTE: I have created a new blog that is dedicated exclusively to this subject and have copied boths posts on the subject to that location. Please go to www.brokenrecordsyndrome.wordpress.com and bookmark it so you can check back periodically for any news.
See you there! Pat
There has been a relative flurry of responses (3 within two months) to my previous post on the subject of music stuck in your head http://hormoneguru.wordpress.com/2007/10/28/songs-stuck-in-your-head-broken-record-syndrome-part-1/.
A year ago I knew of only one other person with this condition. Now I know of at least 12. And 5 of them have been willing to talk with me, providing important details about their experiences and sharing their fears and their anguish.
My private correspondences have covered issues, theories and possible courses of action that may be helpful for other sufferers out there. So I’m going to summarize their content in today’s post. It may be a long one.
THE EXPERIENCE OF BROKEN RECORD (BR) SYNDROME / AUDITORY MEMORY LOOPS (AMLs)
Basically, sufferers of the AML phenomenon ”hear” (in their heads only) short (5-15-second) clips of songs and sometimes phrases over and over to a maddening degree. While most of us have had a song stuck in our heads for a brief period, in those with the AML phenomenon, the noise reaches pathological proportions. It dominates our lives and can, in fact, ruin our lives.
At one end of the spectrum, for some sufferers the internal music is like a soundtrack to life and causes little or no disruption to speak of. For others, the loops occur sporadically, totally consuming their lives at times, and at other times being blissfully absent.
At the extreme end are those who are tortured with constant, unrelenting, mind-scrambling sound loops 24/7 for months or even years with absolutely no relief. I fell into this group, along with two other women I know of so far. For over a year I NEVER had even one minute of silence in my head. Not awake and not in my sleep. I couldn’t even hear my own thoughts. I literally thought I would go insane or die if I couldn’t stop the constant maddening loops in my head.
I have defined the auditory memory loop/AML phenomenon as a condition distinct and separate from the conditions that have been studied so far: musical hallucinations (in which you seem to actually hear the phantom sounds with your ears), and palinacousis (in which a real sound echoes or repeats after the initial auditory experience).
Many of the sufferers who find me have already gone down the “ear worm” path but have realized that ear worm research has only covered the most superficial ground, identifying sticky songs and discussing a mostly cultural experience.
Many of the AML sufferers have been told by their doctors that they are imagining things, or have a psychological disorder or are depressed. Hell yes! You’d be nutty or depressed too if you had the Barney the Dinosaur song stuck in your head every minute of every day and night for a year! Yes, this seems to be truly “all in our heads” but the emotional dysfunction we experience is a symptom/result of the AMLs, not the cause.
For some, the same psychoactive drugs that calm the minds of OCD patients will calm the AML sufferer. I take a small dose of the generic antidepressant trazadone at bed time. I suspect it has also contributed to my almost complete absence of AMLs in the past year since I started taking it. But I’ve also learned to maintain just the right level of progesterone, so I’m not sure how much of an impact the trazadone has really had on the AMLs by itself.
But one woman tried trazadone and her legs went numb.
And, for at least one AML sufferer, an antidepressant (Prozac) seems to have triggered theAMLs. He has also found others with the same experience. So taking psychoactive drugs can be a tricky proposition with potentially more risks than benefits.
THE CORTISOL HYPOTHESIS
Throughout my struggle for answers, I have gathered various clues that have led me to formulate the hypothesis that the adrenal stress hormone cortisol may play a prominent role in this phenomenon. For those interested in the logic, the clues are these:
- MY AMLs started during perimenopause, when my hormones were dropping and were completely out of balance.
- The AMLs stopped when my first doctor put me on synthetic hormone replacement therapy using Prempro (horse estrogen and fake progesterone).
- The AMLs came back a bit when I switched from synthetic hormones to bio-identical hormones (which are chemically identical to those that human bodies make).
- The AMLs got worse when I was stressed.
- The AMLs got worse when I tried to raise my progesterone dose to properly balance my estrogen.
- When I tried Relora to help me lose weight, the AMLs quieted down. (Relora is an over-the-counter/OTC herbal product advertised to help promote weight loss by lowering cortisol. It didn’t help my food cravings but did help the AMLs.)
- When I added 150mg x 2/day of the OTC supplement phosphatidyl serine to boost my declining brain function, the AMLs quieted even further. (PS is essential for cellular and neurological function. It declines as we age…and it also happens to lower cortisol.)
- When my progesterone is low I have virtually no AMLs.
- Progesterone (human and bio-identical) can break down along either of two paths: one leads toward the other sex hormones, estrogen and testosterone; the other leads toward the adrenal corticosteroids, including cortisol.
So my hypothesis is that cortisol is fully or partially responsible for the AML phenomenon (tho I currently have no hypothesis regarding the mechanism involved). My hypothesis is based primarily on four key clues:
- Taking supplements that lower cortisol also reduced the AMLs.
- Taking synthetic progesterone (which cannot metabolize into cortisol) stopped the AMLs.
- Taking bioidentical progesterone (which can metabolize into cortisol) increased the AMLs.
- Stress, which increases cortisol, increased the AMLs.
Since I had been under tremendous stress many times earlier in my life (including during my pregnancy, when progesterone increases to 300 times normal) and never had AMLs, I am at a loss to explain the AML phenomenon based exclusively on cortisol. There must be other conditions in my body/brain now that didn’t exist when I was 35.
Perhaps there is a depletion over time of a brain chemical that normally shuts off the repetitive firing of a memory. Perhaps whatever conditions in the brain that cause the repetitive behaviors of obsessive-compulsive disorder (OCD) are also involved here to some extent.
Perhaps the enzyme that breaks progesterone down into the sex hormones decreases with age, or the enzyme that converts progesterone into cortisol increases, so that more progesterone breaks down into cortisol. If that’s the case, then perhaps someone like me could supplement the sex-hormone enzyme or inhibit the corticosteroid enzyme to make more of my progesterone convert into estrogen and testosterone.
But if it is truly just cortisol, then everyone with Cushing’s Syndrome (super-high cortisol) would have AMLs, and I haven’t seen any reports to that effect.
So while reducing cortisol might help many of us AML sufferers, we still won’t know what other mechanisms are involved in creating the unique AML conditions until someone studies us. For now it’s enough to at least have one possible path to relief.
WHAT TO DO IF YOU HAVE MUSIC STUCK IN YOUR HEAD
Certainly you need to rule out serious medical issues first.
When I consulted my first gynecologist for this problem, wondering if it might be related to menopause and the craziness of my cycles, he told me: “You’re not in menopause. Either you have a brain tumor or a thyroid problem…and you don’t have a brain tumor!“
Turns out I WAS hormonally menopausal. But the fact is that it could easily have been a thyroid problem or, yes, even a brain tumor.
If your cortisol levels are chronically high, you may have an adrenal or pituitary tumor (Cushing’s Disease), or other kind of brain tumor that needs to be treated. The AML sufferer whose AMLs started when he took Prozac briefly may have knocked his neurotransmitters off-kilter. So you have to go through all the right gates and rule out other issues before you start considering a simpler stress/cortisol hypothesis.
Here’s how I recommend you approach it:
- First ask your doctor to help you with your quest. And if one doctor won’t walk this path with you, find another. One who will play the role of detective, who will order the relevant tests, who will noodle through the logic as you accumulate new clues, and who will formulate and test new hypotheses as you gather more clues.
- Look for clues that might indicate a cortisol connection. Do your AMLs flare up or get worse when you’re stressed? If you’re female, do the AMLs get worse during the 2nd half of your cycle (days 14-28)? Or did they start or get worse when you were pregnant?
- Ask your doctor to test your free hormones (not total), ideally: (1) estradiol, (2) progesterone, (3) testosterone, (4) DHEA, (5) thyroid (all, not just TSH), and especially (6) cortisol (4 different times during the day). And at least test your cortisol.
- If your AMLs come and go, I strongly recommend you have your hormones tested both during an AML episode, and when it’s gone.
- If your sex or thyroid hormones are out of whack, ask your doctor to correct them.
- And if you have Cushing’s, wait and see if its treatment will resolve the AMLs.
- If major health issues are ruled out or corrected, and it turns out that you simply have a lot of stress and a lot of cortisol flowing through your body, then consider trying one or both of the OTC supplements that have worked for me: Relora http://www.findsupplements.com/browseproducts/Doctors-A-Z—Relora-250-mg-Capsules-90-Each.HTML and phosphatidyl serine http://www.vitacost.com/Source-Naturals-Phosphatidyl-Serine-150-trade You can usually find both products in any good health food /vitamin store.
If you and your doctor are comfortable with your trying the OTC solutions, I’d recommend you start with the Relora. It works fairly rapidly for me, with one pill providing relief within a couple of hours. If that works, it tells you that cortisol may be involved in your AMLs.
Then you can add the phosphatidyl serine, 300 mg per day (I take 150 mg with breakfast and dinner). The PS seems to have a cumulative effect but takes a while to make a difference. I no longer take Relora except if I have a bad flare-up and need immediate relief.
WHAT IF MY DOCTORS WON’T WORK WITH ME?
It is possible that your doctors may not be able or willing to go beyond the conventional diagnoses and treatments and may send you on your way without any real answers.
If that happens, you can still try the cortisol reducers. But I urge you to do so responsibly. Get your hormones tested first, preferably all of them including thyroid, but at least cortisol, 4 different times in one day.
You can get home test kits that only require saliva samples. You basically spit into a little tube, cap it and mail it to the lab with your check. The kits come with prepaid return mailers.
There are debates raging over whether saliva tests are as valuable as blood tests. Some say they are more accurate because they measure the “free” hormones that are actually available to your tissues and organs, whereas blood tests measure total hormones, much of which is ”bound” and not available for use. Either way, they are convenient and will at least give you ballpark values to tell you whether you’re in or out of the normal range.
Ideally, you should test estradiol, progesterone, testosterone and cortisol (times 4), DHEA and thyroid hormones, just to rule out unexpected highs, lows or imbalances (However to measure them all can be quite expensive. This is why it would be best for your doctor to order the tests so your insurance will pay for them.)
The following are some home test kits my gynecologist uses for her patients.
ZRT Labs (www.zrtlab.com) offers a cortisol-only kit for $138. http://www.zrtlab.com/Page.aspx?nid=12&action=view&category=11
ZRT offers a couple of comprehensive kits (one set for males and one for females) http://www.zrtlab.com/Page.aspx?nid=12&action=view&category=3 , which collects blood and saliva samples and tests all the sex hormones plus thyroid for $345. (For the blood sample, you prick your finger, like diabetic testing, and let the blood drop soak into a special pad. )
Eliminating thyroid from the test brings it down to $270 for the sex hormones and 4 cortisol collections (all saliva-only tests). http://www.zrtlab.com/Page.aspx?nid=12&action=view&category=2
I’ve also found the following affordable sex-hormone test kits. My sister has used FemaleCheck.
FemaleCheck and MaleCheck are kits for saliva testing sex hormones and are available at a number of onliine sources. About $75-$90 — shop around for price. http://www.healthhometest.com/index.php?cPath=40
SHARE YOUR EXPERIENCES
There are so few of us (that I know of) who suffer from this phenomenon that few, if any, researchers are even looking at the chemical aspects of it.
If you have songs stuck in your head, please contact me at hormonebook(at)yahoo.com. I have developed a comprehensive survey designed to collect information about those of us who suffer AMLs. I would be most grateful if you’d be willing to fill it out. Or just chat with me.
Information about your experiences will provide important new clues that may one day help researchers find the cause and cure for this crazy condition.
Thanks so much!