Skye: Chemotherapy-induced Insomnia

[Skye]

Hi everyone. About 7 weeks ago I suffered a major adverse reaction to chemotherapy for an HER2+ cancer. It left me completely unable to sleep, and all my muscles unable to relax. After 2 days without sleep, the oncologist's assistant prescribed 0.5mg Lorazepam 4 times-a-day. I knew the drug was addictive, so I only took one in the afternoon and one before bed. It allowed me 5-6 hours of not particularly restful sleep. But I felt it was better than nothing. 

I am (was?) an athlete, before finding the cancer. I had a very good diet and regular workout schedule, as I trained for a future event and certification. 

I had Grave's Disease when I was younger and my thyroid gland had been removed. Other than my thyroid replacement pills, I never had to take anything.

I was diagnosed last year with Systemic Scleroderma, because it popped up in a blood test, but only had mild digestive symptoms. I took Low-Dose Naltrexone (LDN) to try and prevent the disease from advancing. That seemed to be working just fine.

I found the cancer late last year and began chemotherapy in May. It went well for the first 4 rounds, and I hardly had any side effects. Then the chemotherapy session came that was followed by the strange reaction a couple of days later.

My health went downhill from there. In addition to the inability to sleep, my entire intestinal tract seemed to come to somewhat of a standstill. My stomach no longer growls or feels hungry and whatever I consume moves slowly through. I've lost a lot of weight and was lean to begin with. I think this is being caused by the Scleroderma and have had a blood test to see. I want to get back on my LDN to see if it helps.

My cancer surgeon felt that I was strong enough to go through my surgery, which took place last week. When he became aware of the difficulty I was having trying to sleep, he prescribed Trazodone to be taken along with my Lorazepam, but wanted me to wait until after the surgery to try it. In a virtual appointment with my PCP, he agreed it was worth a try. While researching "non-addictive" sleep aids, I found the Mirtazapine and felt it might be better than the Trazadone. My PCP agreed, so we tried it. I've finally been able to get some actual sleep the last 4 nights.

I am scheduled to see an endocrinologist next month and would also like to go to a neurologist to try and determine what is actually wrong. In the meantime, I'm concerned that I'm taking drugs that I'm now dependent on, and my PCP is wanting to wean me off the Lorazepam. I'm also afraid of developing tolerances before a diagnosis can be found. 

Do people ever successfully take these drugs for long periods of time? 

Is there another type of doctor I should see?

Any suggestions or information would be appreciated. 

[Altostrata]

Welcome, @Skye

 

I am very sorry you had an adverse reaction to chemotherapy. Treatment-induced insomnia is indeed very difficult.

 

People do take lorazepam and other benzodiazepines for very long periods, but the drugs tend to induce physiological dependency within weeks and eventually cause problems with interdose withdrawal, dosage escalation, and other adverse effects.

 

We do help people taper off benzodiazepines here. Please let us know when you are ready to taper off.

[Skye]

Thank you very much @Altostrata. I understand that I have become dependent on the benzodiazapine and mirtazapine, which I am, of course, not thrilled with. For now, however, they are helping me sleep well and recover from my first surgery. I hope they continue to work. 

I have to have my final surgery in 6 to 8 weeks. Which brings up a question. I was only on the Lorazepam when I had the first surgery. I am now also on the mirtazapine. Could the anesthesia from surgery cause my current 2 drugs to stop working for me?

[Altostrata]

Anesthesia for surgery uses benzodiazepine-like drugs. You will need to emphasize to your doctors that you are concerned with drug interactions.

 

You also need to remind them you have been taking lorazepam and mirtazapine, and you want to avoid withdrawal from those drugs.

 

If you have become tolerant to lorazepam and it no longer "works", you might want to start tapering off it now. Please let us know if you want to do this.

[Skye]

I am unsure if it is still working. It does take me longer to get to sleep, and I'm waking up a bit earlier. I am still getting about 8 hours of sleep, which I know is important to healing after major surgery. 

I would love to be off of the Lorazepam, but it has been the only thing that would allow me to sleep at all. I was hoping to find out the reason for the chemotherapy-induced insomnia and working towards fixing it before tapering off the meds. I have an upcoming appointment with an endocrinologist and have requested a referral to a neurologist who specializes in sleep disorders. 

 

With all that said, how would I begin to taper off? I have a very good Primary Care Provider who has read "What I have learnt from helping thousands 
of people taper off antidepressants and 
other psychotropic medications", and is willing to help me however he can. Also, we do have access to a compounding pharmacy. I appreciate your help and suggestions.

[Altostrata]

What is your drug schedule, with times o'clock and dosages? We may be able to smooth out the lorazepam schedule.

 

You probably have side effects from other drugs and the surgery itself, correct? Do you feel any distinct effects from lorazepam?

 

Thank you for showing your doctor "What I have learnt". Did he say anything about it?

[Skye]

I take the 1mg of Lorazepam and 7.5mg of Mirtazapine between 9:00pm and 9:15pm every night and go to bed about 20 minutes after. It doesn't seem to work as well if my stomach isn't empty, and my digestive system is another thing that was apparently damaged by the chemotherapy event. I have to make sure I eat dinner early and to not eat too much, ormy stomach won't be empty enough. 

 

I feel fairly normal during the day. Sometimes a bit tired or groggy when I get up, depending on how I slept. 

 

I haven't spoken to my doctor about the document yet. I have a virtual visit with him Monday and will ask his thoughts. I know he read it, because his nurse made sure of it. She's the one we actually handed it to. He did refer me to a neurologist who specializes in sleep disorders. I only hope I get to see him soon. 

 

The surgery is healing and is a little sore. The only thing that bothers me about it is that I have 2 drains coming out of my back. Annoying. And I can't sleep on my preferred side. The drains are supposed to come out next Wednesday. 

[Altostrata]

You might discuss the ramifications of your taking these drugs and your upcoming surgery with your doctor. I wouldn't change anything for now.

[Skye]

I agree. The surgery is at minimum 2 months away, and can likely be postponed a little longer. Hopefully, that will buy me enough time to see the specialists and figure out what happened. Thank you for all your help. 

[Altostrata]

My guess is you have become tolerant of lorazepam and it's not helping for sleep any more. But tapering off it may exacerbate your insomnia and cause other withdrawal symptoms. Not sure what increasing the dose more would do. More daytime grogginess is likely.

 

Given you are recovering from surgery and facing more surgery, I cannot recommend drug changes at this time.

[Skye]

My PCP upped my Lorazepam to 1.5mg on Oct 27, and I've been getting 9 hours of sleep consistently since and feeling much better and stronger during the day since. 

I went to a neurologist today, and he said it's time to taper the Lorazepam. He wants me to start tonight taking 2 1/2 pills,which will be 1.25mg, and up my Mirtazapine if I need to. He said to go 3 days and see how I do. If it goes okay, he said to reduce it down to 2 pills, or 1mg.

[Skye]

@Altostrata I tapered to 1.25mg of Lorazepam for 3 nights, while continuing the 7.5mg Mirtazapine. Then, I reduced the Lorazepam to 1.125mg and upped the Mirtazapine to 11.25mg. Tonight will be the third night at these doses. I've done okay so far.

Tomorrow, I'll lower the Lorazepam to 1mg and plan to leave the Mirtazapine at 11.25mg. 

The neurologist said to take the Mirtazapine up to a whole tablet, or 15mg, if I needed to. He also started me on 1mg of Melatonin 2 hours before bed, and 400mg of Magnesium Glycinate 1 hour before bed. I started taking those the second day of tapering.

I'll let you know how it goes. 

[Altostrata]

That sounds like a rather fast reduction of lorazepam taken for more than 2 months, which we would not recommend.

 

If you have been taking lorazepam at night, I would watch out for the appearance of odd symptoms in the late afternoon or evening, before you take your next dose of lorazepam. Those would be withdrawal symptoms.

[Skye]

@Altostrata Maybe the reason I haven't had any withdrawal symptoms yet is because I was on that third Lorazepam pill for only 2 weeks. Once I begin tapering below the 1mg (2 pills), that might change. 

What amount of time would you suggest staying at 1mg before I begin tapering down to 0.825mg, which will be 1 and 3/4 of the 0.5mg tablets?

I think the amount of Mirtazapine, 11.25mg, is probably right for now, because I slept well last night. 

[Altostrata]

What date did you start reducing lorazepam, how long have you been taking only 1mg/day?

 

You may find more difficulty reducing from lower dosages, since you've been on them longer, 0.5mg since August 6.

[Skye]

@Altostrata The 1mg of Lorazepam was started on 9/8/21, immediately after my mastectomy surgery, so almost 6 weeks ago. Then, the 7.5mg of Mirtazapine was added on 9/14 to improve sleep quality. 

I'll be tapering to 1mg of the Lorazepam starting tonight. How long, do you think, it would be best to go before tapering to the 0.825mg dose?

[Altostrata]

Have you been tapering lorazepam since last Tuesday, 6 days ago?

 

It's possible the first reduction is only now registering. I would stay at 1mg for at least a week.

[Skye]

@Altostrata  Yes. Tapering since last Tuesday. 

Sounds good. I'll let you know how it goes. Thank you very much. 🙂

[Skye]

Happy New Year! @Altostrata 

Thank you for your email full of helpful resources. 

i owe you an update. I followed your advice of tapering the Lorazepam every 7 days and it worked! I successfully tapered off Lorazepam on December 13th. I had 3 rough nights immediately after, but have improved since. The main issue being insomnia. 

You'll notice from my signature that my neurologist increased my Mirtazapine dose during the Lorazepam taper, to help with the insomnia. Now that I'm off the benzo, he wants me to stabilize on the 15mg of Mirtazapine for about 3 months, to allow my receptors to heal, and to retrain my brain to have a regular sleep schedule. Then, taper off the Mirtazapine. So far, this is working. Things have improved over my first 3 weeks.

My digestive tract has been functioning much better since I stopped the Lorazepam, and I've actually gained 3 or 4 pounds. Yay!

I have had something happen that I wanted to ask you about, to see if it might be related to the withdrawal. Right after I started tapering, I had an autoimmune flare that has gone on ever since. It's almost gone now, but has caused symptoms the entire time I was tapering. I've never had a flare last this long. Can withdrawal from a benzodiazapine cause the immune system,  in a person who has pre-existing autoimmune issues, to go haywire? 

 

[Altostrata]

Good to hear you're doing better. Did the increase in mirtazapine cause you to sleep better?

 

8 hours ago, Skye said:

Can withdrawal from a benzodiazapine cause the immune system,  in a person who has pre-existing autoimmune issues, to go haywire?

 

Upset from any of these drugs can cause flares in people who are already coping with pre-existing physical conditions.

[Skye]

@Altostrata

Yes. The increases in the Mirtazapine, while reducing the Lorazepam, definitely helped me to be able to sleep. A couple of nights ago, I was laying on the couch, in the dark (part of my pre-bedtime sleep hygiene), waiting the typical 30 to 40 minutes for the Mirtazapine to start taking effect, and I went to sleep. It had only been 10-15 minutes since I took it. I was only asleep for a couple of minutes, but that couldn't have been the Mirtazapine. I think I actually went to sleep on my own! I was so happy. Maybe there's hope afterall. 😁

[Altostrata]

You may want to try a little melatonin, such as 0.50mg. This can help train your sleep. See Melatonin for sleep: Many people find it helpful

 

[Skye]

@Altostrata

My neurologist is the one who has been advising me during the taper. In the beginning, he suggested that I take 1mg extended-release Melatonin 2 hours before bed and 400mg of Magnesium Glycinate 1 hour before bed. I take the Melatonin about 90 minutes before bed, and that seems to work fairly well. He also suggested I find a Melatonin that was certified by the U.S. Pharmacopeia organization, so I know it contains the amount of Melatonin stated on the label, and doesn't contain serotonin.

 

Thank you for the link. I will have a look.

[slowphie]

Hey Skye, I also came off Lorazepam after 13 weeks of use, and I’ve been on 15mg of Mirtazapine since November. I think my benzo WD symptoms have been a lot more intense than yours 😅 so I’m happy it went relatively well. I’m going to follow,  because I also want to taper off Mirta eventually. I’m actually really nervous about it, to the point that my anxiety is pretty intense at the moment. I’m glad you’re doing well. How is your sleep these days? 

[Skye]

Hi Slowphie,

 

My sleep is pretty good. I wake up at least 3 times a night most of the time, but I'm able to get back to sleep. And most nights I'm getting at least 8 hours of sleep. Sometimes it might not be the most restful sleep, but 8 hours is pretty impressive, coming from zero hours 5 months ago. My sleep quality is much better since I stopped the benzo too. I was surprised by that.

 

I hardly had any WD from the benzo, except for the autoimmune flare, and that's almost gone. Thankfully, I had it pretty easy. I was scared because of the stories I read. My maximum dose was only 1.5mg and that was just for a few days.

 

My neurologist wants me to stabilize on the Mirtazapine for about 3 months to allow my brain to recover from the benzo and get used to sleeping on a regular schedule. Then, we'll try tapering off of the Mirtazapine. 

 

I hope you are able to taper off of it successfully. Let me know how it goes. 

 

[slowphie]

Thanks Skye. My psychiatrist has been pretty useless and already told me to just halve the tablet, but doing that when I’m only 26 days out since the last lorazepam seems really dangerous and irresponsible. Sounds like you have a somewhat decent doctor on your side. ☺️