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,