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!

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!

 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/

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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.

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

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

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

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?

For some of us, it is just a matter of getting our heads quiet enough for a few minutes to let us fall asleep. For others, the crazy broken record shows up in our dreams too, hicupping through that same 15-second music clip for hours upon hours until we wake up in a tortured panic.

If my cortisol hypothesis has any merit, then the very act of losing sleep is, in fact, feeding the AMLs and creating a self-perpetuating cycle.

So we need to find ways to do 2 important things: (1) reduce stress, and (2) get sleep (and they are related).  Yes, I know: it’s easier said than done.

We have to reduce stress, but what exactly is stress?  Let’s define it as “circumstances or conditions that elevate cortisol levels.”

Remember that our bodies were engineered to pump out cortisol to give us a burst of energy so we could get away from that saber-toothed tiger chasing us. But that burst comes at a price. To release emergency energy reserves, cortisol burns tissues. And it’s not all that particular about which tissues it burns. Could be brain, heart, liver, kidneys, muscles, whatever. It’s a great thing if it helps you live to hunt and gather another day, but bad when the least little thing causes the same reaction.

It’s like burning your furniture if the weather’s freezing and the power’s out and your house is buried in 20 feet of snow. It’s the right thing to do under the circumstances, but not something you can afford to do on a regular basis. In our modern world there are too many little situations that our bodies react to as if they were life and death: an angry email or phone call, clogged plumbing, showing up in the same dress as someone else. Not quite the same caliber as being eaten by a tusked predator, but our bodies react the same way.

And if we keep the stress levels high enough for long enough, our adrenal glands will burn out and then we’ll feel tired all the time. (Adrenal burnout can be reversed by the way.)

So what raises cortisol levels?

• Life situations that excite us, either negatively or positively. Happy things, like a wedding or new baby, can be just as “stressful,” in terms of releasing cortisol,  as facing an IRS audit or divorce.
• Poor diet. If we eat nothing but junk food, too many carbs, not enough fruits and veggies, our bodies panic and release cortisol. If we skip meals or starve ourselves or purge to stay thin, our bodies release cortisol.
• Too little or poor quality sleep. When we don’t get enough of the right kind of sleep, our bodies produce cortisol because sleep is supposed to recharge our batteries. Without proper sleep, we may have to run on backup fuel (cortisol). 
• Too much exercise. When we exhaust all the normal stores of energy, cortisol cranks up to try and keep us going. Even with normal exercise, the push to get past ”the wall” can tell our bodies that we have an emergency that needs an extra shot of energy. 
• Illness, injury.  When our bodies are harmed or damaged, cortisol kicks in to provide extra healing energy. (Illness can also reduce or drain cortisol.) 
• Disease. I’ve listed this separately because there are certain diseases/conditions that cause an overproduction of cortisol. In Cushing’s syndrome, for example, patients may have tumors either on the cortisol-producing adrenal glands themselves or on the pituitary gland in the brain that sends out messenger hormones that tell the adrenal glands to produce too much cortisol.  

I think those are the main ones. So what can you do to reduce each kind of stress?

Excitement

• Learn to meditate

Obviously you can’t control the negative things in your life, and don’t want to eliminate the positive stressors, but meditation may help you reduce the amount of stress your adrenal glands think they need to respond to. When you feel yourself getting wound up, stop, sit in a quiet place and let go for a few minutes.

• Get moderate exercise

I’ve never been able to meditate, but I accomplish the same thing by walking. Not power-walking or doing errands, but just peacefully walking down a country road or park path. I find that I have to walk at least 30 minutes before the craziness of life finally starts to drain away.

• See a hypnotherapist for relaxation techniques

You may not be able to “will” the AMLs away, and trying to will only create more stress. It’s like willing yourself not to think of a pink elephant: you focus on it even more. But a good hypnotherapist may be able to help you create a peaceful mood whenever you need it.

• Simplify your life

If you are stressing because you have too much going on and can’t do justice to it all, then let go of some of it.

• Make peace with the stresses you face and the things you can’t do or choose not to do

If you’re stressed about money, then consider how to reduce your financial needs. If you can’t find a fancy job in your chosen field, take a different job doing something fun, even if it pays a lot less. And if you are stressed because you can’t do everything on your plate, forgive yourself, allow yourself some freedom and pleasure, and ask those around you to help you find some peace in every day.

Sleep

Yes it’s hard to sleep with a 24-hour disco  in your head. And I know the usual advice about doing relaxing things and keeping to a routine every night isn’t the answer for this 800-pound gorilla. So how do you get to sleep, stay asleep and get restful sleep? Beats me. But here are some ideas from the rest of us:

• Do about 30 minutes of light exercise before bed

Crazy? I thought so, till a doctor told me that getting some light exercise, like walking on a treadmill (I walk in place while watching TV), will burn off excess adrenaline (related to cortisol) that you’ve produced during the day. That way, you’re not all juiced up when you’re trying to fall asleep. Just don’t let your heart rate get over about 100.

• Take melatonin 30 minutes before bedtime

This is the hormone your body produces while you sleep to help make repairs and balance other hormones overnight. In the past, melatonin supplements were great for about 4 hours’ sleep, but then you were awake again. Now, many manufacturers offer a 3 mg time-released product that gives you at least 6 hours. Some people take 6 mg or more, but check with your doc and work up on dosage to see how you like it. (I personally find that my melatonin sleep isn’t quite as sound as with the Zyrtec.)

• Take over-the-counter sleep meds

But try not to take more drugs than you need. If Tylenol PM has Tylenol (acetaminophen) and Benadryl in it, then just take Benadryl (or generic diphenhydramine) by itself instead. No point ruining your liver with the Tylenol if you don’t need pain relief. Most OTC sleep meds are antihistimines like Benadryl anyway. So look at the ingredients and see if you can find a different product (allergy/sinus or sleep product) that only contains the sleep-inducing chemical /antihistimine.  

I find that Zyrtec helps me get to sleep and stay asleep the longest. But it doesn’t cause drowsiness in everyone. If it does work for you, you can find the generic cetirizine a LOT cheaper online.

• Take a cortisol reducing herb like Relora at bedtime

For people with stress-related AMLs, Relora may just take the edge off the noise and relax you enough to fall off to sleep. (Relora may also reduce your appetite.)

• Sleep in complete darkness

Studies have shown that our bodies can pick up even the tiniest bit of light (like the light on a power strip or TV) and that light will suppress the amount of melatonin we produce at night. For the most restorative sleep, try sleeping with a comfortable sleep mask or get the room as dark as possible.

• Try chanting or humming just one note

When my AMLs were bothersome at bedtime, I ran a large floor fan in the bedroom to mask out little noises like the heat/AC kicking on, ice cubes dropping in the icemaker, etc. But I also discovered that I could manage the music enough to fall asleep by picking one note from the the fan’s hum and then concentrating on that note…effectively “humming” it in my mind. It’s like the chanting in certain types of meditation. If my mind had to be  sticky anyway, I could try to give it a peaceful, one note “song” to stick to.

• Other solutions

I didn’t mention the more dramatic solutions like taking sleep-inducing prescription drugs with all their crazy side effects and dangers. I also didn’t mention hitting yourself in the head with a hammer to knock you out at night, or taking IV sedation that’s used for surgical anesthesia. They might work, but the consequences can be undesireable at best.

Diet, Health and Exercise

These are pretty obvious. Eat moderately-sized healthy meals on a regular basis. Get all the nutrients you need, either from food (ideally) or supplements. Don’t over exercise. And if you are ill or injured, give yourself extra time and babying to recuperate.

Disease

If you crave carbs, are overweight no matter what you do, and have excessive thirst, consult an endocrinologist and have him/her test your blood sugar and your cortisol levels.

BOTTOM LINE

You may be stuck with the AMLs but you don’t have to let the stress feed them and make them worse. Be good to yourself, find ways to sleep, eat properly, exercise moderately and relax every day.

And if you have any solutions that work for you, please share with the rest of us!

Happy chanting. Ommmmmmmmmmmmm…

Until fairly recently, he had assumed that everyone had stuck music in their heads. He has had the AMLs for some time, but is only now wanting them to go away.

For years, Dana had thought her son might have a hearing problem because he was always shouting and wanting to turn up the volume on the TV and radio. But multiple hearing tests have come up normal. As a sufferer myself, I told her that I could absolutely understand why a child sufferer might try to “turn up the volume” on the real world thinking the external noise could override or drown out the noise in his head.

Then she told me something very curious and critically important from a diagnostic standpoint: Her son is an identical twin. But his brother does NOT have the AMLs.

So I asked her if there are any obvious differences between the two boys. The key differences she noted were that the AML sufferer: (a) craves carbs, and (b) is excessively thirsty.

I knew the carb craving was an indication of insulin resistance (which could be the result of high cortisol levels).

And I knew the excessive thirst was also a symptom of something, but I needed to do some research before I said anything to Dana. It turned out that, in the TV show I recalled seeing, the patient’s thirst was the final clue to her diagnosis of Cushing’s syndrome, which is a condition involving high cortisol levels.

When I told Dana (who is a nurse) what I’d discovered, she agreed that taking her boys to an endocrinologist might be a good next step. I’m hoping to hear back from her after they get the results of the boys’ labs.

If the doctor finds that the AML-suffering twin has much higher cortisol levels than the normal twin, then theoretically he can find an appropriate treatment to suppress the cortisol production. 

However, in doing some more research, I found that many of the current cortisol blocking agents are as bad as, or worse than, the problem they intend to treat. One blocks the development of all steroid hormones (which we need to survive). Another reduces cortisol by destroying parts of the adrenal glands. Not good choices, in my opinion.

In any case, I believe that if we can find a researcher willing and able to study these two boys to see what’s different about them, I think we can significantly advance the state of our knowledge about this condition.

And, ideally, we can help get one little boy back to normal. I’ll report if I hear more about this curious case.

Have a great weekend!

Then one day I realized couldn’t get them out of my head. It was as if my brain was a music magnet and everything would get stuck.

Around the age of 48-49, after a year of dealing with the worst of it (couldn’t hear my own thoughts, couldn’t sleep), I went to the doctor to ask if this might be a symptom of menopause. He sarcastically said, “Either you have a thyroid problem or a brain tumor…and you don’t have a brain tumor!” But to shut me up he tested my sex hormones as well as thyroid hormones.

Turned out my thyroid hormones were normal…but the sex hormones were seriously low. So, yes, I was hormonally menopausal.

He put me on Prempro, the horse-estrogen and fake-progesterone drug that at the time was the gold standard for hormone replacement therapy (HRT). This was before the big WHI study said the stuff is really bad for you. (Duh.) Curiously, this bad drug stopped the music in my head. So it was a matter of good news / bad news.

Thinking I’d discovered that it was indeed the low or imbalanced sex hormones that caused the BR/AMLs, I boldly proceeded to switch from those nasty alien hormones in Prempro to the more natural approach of using bioidentical hormones. These are hormones that are chemically identical to those nature gave us.

Well, they were good for me in most ways. But sadly, the more natural hormones didn’t stop the BR/AMLs.

Since that time, I’ve developed the cortisol hypothesis written about in previous posts. The hypothesis began when I was writing my book, What Part of Menopause Don’t You Understand?  I thought about how real/bioidentical progesterone differs from fake progesterone (Provera or MPA). The key difference is that the real/bioidentical stuff can break down into cortisol. The fake stuff can’t.

Not everybody I’ve talked to can make a connection between high stress (with high cortisol levels) and the triggering or increase of the BR/AMLs, but probably 80% can. Some seem to have first noticed the AMLs after a traumatic event or situation in their lives. For some, it seems the BR/AMLs started when they took one of those very same antidepressants that are given to try and quiet the AMLs (however, the need for those meds may have been preceeded by a traumatic or stressful situation that might have been the real cause).

But I suspect there is also another factor in addition to cortisol involved. After all, I know I faced stress many times in my life before age 50. So something else changed after 50 that made stress cause my brain to become “sticky.” Maybe there’s too much of the enzyme that converts progesterone to cortisol, or too little of the one that converts progesterone to estrogen and testosterone. Maybe there’s something new in my brain, maybe low or high neurotransmitters, or something physical like a lesion acting like a leaky faucet.  That’s what we need a researcher to figure out.

Anyway, that’s how my nightmare started.

How and when did your music magnet turn on?