Does insomnia ever improve?

I’m on month 5 of PFS caused by aromatase inhibitor use.

I suspected it was due to my AI use so I stopped immediately after experiencing the insomina, although I wasn’t sure at the time what might have caused it. Initially I thought I was just suffering from regular insomnia, so did 8 weeks of CBT-I with zero improvements whatsoever. My therapist even admitted to me this was the first time she’s never seen any improvement with one of her patients. The 5 hour sleep restriction absolutely killed me and started to become super depressed and anxious (I still am).

I can only sleep 2 to 4 hours before waking up in the middle of the night. Then I am tossing and turning for the rest of the night. Every time I sleep I am instantly in REM dream sleep. My dreams are very vivid and I remember them almost in their entirety every night. I never get any deep sleep. I am now super depressed.

Is this a symptom that can ever get better? What methods have people done that has improved them?

1 Like

Same thing happened to me after horrendous AI crash. Sleep was disturped like your for a long time. It took over a year to start to get some better sleep. Sleep is still not good but way better than it was when I was in my worse period.

Here is my last night. I have monitored my sleep now for 1,5 years to know what maybe has an effect for it if I make any changes to my protocol ->

2 Likes

Thanks. This does give me some hope. How would you describe your sleep recovery? Was it incremental over time? And was it just time that fixed it, or was there anything you tried that helped? i.e. supplements or diet or drugs?

What did this consist of exactly?

Cognitive Behavioural Therapy for Insomnia. Look it up. It’s a standard treatment for insomniacs who haven’t wrecked their bodies.

1 Like

Just chiming in that I’m in month 2 of the exact same problems following aromatase inhibitor use. My first and only dose caused a crazy panic attack, and it’s been a whirlwind of anxiety, dizziness and insomnia ever since. You described the sleeping problem perfectly; what little I get feels like fully conscious lucid dreaming. It gets so uncomfortable I need to shake myself awake, and I remember everything from it. Sleep used to be my favorite part of the day and now I dread it.

Sorry to hear you’re going through this too. I’m still taking it day by day. I can’t say my sleep has improved much but it’s more consistent. I don’t remember the last time I had less than 4 hours total sleep. I’m trying apple cider vinegar before sleep for the first time tonight. This is recommended quite a lot here, however I’ve not had success with supplements so I’m not expecting much. Benzos are the drug that gives some benefits but I need high doses and it’s a slippery slope. Maybe somehow the AI damaged some GABA function. Also antihistamines just don’t work at all for me. I had no benefit with mirtazapine, although I stopped quickly because it was making my balls ache. Gabapentin might also be worth a shot but it didn’t help me after the first night.

Right, my doc has given me Vistaril, which just makes me drowsy but doesn’t induce sleep. Also Trazadone which gave me weird heart murmurs and made me stuffy so I gave up on that. He did eventually give me Ambien last week, which gives me maybe 1-2 hours on nights I take them (was told to stagger the usage to prevent dependency). I’m trying to get some benzos out of him but he’s reluctant, I guess I understand why but I really need something that will just knock me out.

It’s like being in hell…I’m so over the sleep issues . For me it’s the worst . I’m currently stuck in a similar position - sometimes I’m not sure if I have slept at all but then I remember the vivid dreams so I’m thankful I get something .
The thing that’s frustrating for me is…NO ONe seems to know the cause of this kind of insomnia when it’s hormonal/medication related , doctors still seem to slap out the same old CBTi and mirtazapine/trazodone which doesn’t really help the problem . Insomnia like this is so severe too , where does it fall under in terms of specialty - neurologist, psychiatrist , endocrinologist …urologist even if it’s sexual/ hormonal. I’m just at a loss and it has made me feel so hopeless. People don’t seem to understand why I have insomnia like this , one of my mates even asked if it was because I had been using meth that could do something like this , hell no it’s not meth!!

2 Likes

Mine completely resolves, it took 4 months for whatever reason, for me it was like if my brain was overstimate all the time and cant shut it down.
Ot does gets better

2 Likes

I’m glad for you , you have been able to get it sorted . That’s awesome! Brings me some hope too this is temporary …

My insomnia resolved after 6 months, but then I took like a lot cacao nibs for a couple of days and I went back to being able to stay asleep for about 3 hours. A year and 2 months later and it hasn’t improved. I still can only stay asleep for about 3 hours.

So if you don’t take anything that could tank your androgens further, then it’s possible that your insomnia will get better completely with time.

Im having the worst insomnia of my life after taking VitD3 & K2, along with worsened sides.

I’ve slept about a total of the 6 hours over the past 3 days, all consisting of 30 minute naps.

I pray to God there’s improvement for this. I can handle the ED and the anxiety and the digestive problems, or even the shitty sleep here and there. But back-to-back never ending insomnia is too much.

I’m trying to get a prescription for a sleeping pill now, hopefully something helps. Any recommendations? I’m gonna try to stay Clear of benzos

Check out @Shellnyce’s posts he had severe insomnia problems and wrote about the various drugs that worked for him.

He seems to be doing OK and names a drug here that seems to be working for him here:

1 Like

Man, I’m sorry. Has anything got worse other than insomnia?

I used lunesta …it was good for what it did at the time , it allowed me up to 4-5 hours sleep occasionally 6 at a time when I had previously got next to nothing .
It’s similar acting class to a benzodiazepine though and gives you tolerance , dependence on it to sleep , addictive etc
I used it for 4 months or so every night and managed to taper off in the end . I use it occasionally now when I’ve had a run of bad nights in a row. It’s not something I’d reccomend to anyone as first line treatment - unless you have had no sleep for several days and are getting desperate etc

Good info @Forwardsnotbackwards, I know @Shellnyce has written about having things on rotation to avoid addiction, I think.

Hopefully people can get a sympathetic doctor to try various routines out.

1 Like

I was able to sleep last night using Hydroxyzine. I’m hoping it puts my sleep mechanism/ability to fall asleep back in check.

My other symptoms are good, besides lower back pain. I think it’s an autoimmune inflammation like arthritis. I will talk to my gastroenterologist

Sleeping on tough mattress /floor helps with my back pain too

Do you know how Aromatose inhibitors cause insomnia ? Is it something to do with the estrogen receptors being blocked ??

I cant say that aromatase inhibitors on their own cause insomnia directly. Its more of like a consequence of a major imbalance on the hormonal axis / cortisol rhytm / gut microbiome / etc. Blocking an enzyme that important is very risky. Blocking whatever enzyme is risky, I think we all know that now. Aromatase has many many other important tasks in human body on top of converting testosterone to estradiol. And if we manipulate those enzymes there can be really long lasting negative effects.