Calling all insomniacs

gailmary · February 2019

Calling all insomniacs, past and present. I know you're out there. I'm curious to know if you determined it was letrezole or another ai causing depletion of estrogen that led to insomnia. How bad is it? 1 hour or 6 hours delay before falling asleep? Did switching ai's help? Cbd oil? How much? Herbal remedy? Or prescription? Did you do a sleep study and therapy? Did you see a naturopath? Accupuncture anyone? Lets get a consensus of what really helps. Preferably without harmful drugs.

gailmary · February 2019

Im feeling a little desperate for sleep which is why i started this thread. I took letrezole in the past for several years before the insomnia hit. I quit letrezole after trying ambien and finding i was allergic to it. Fast forward 6 years and dx stage 4. BOTH Letrezole and Faslodex this time. After only 1 year the insomnia hit just as hard. Literally awake the entire night. Here is what i tried and why i dont use it.

Melatonin - didnt work plus got restless legs

Valerian root - diarrhea

Various teas - kava- extra sleepy time, chamomile - no luck

Deep Sleep- herbal blend- great for 5 days

Relax pm- Herbal blend- great for 3 days

Accupuncture - helped alot in the beginning

Meditation- helps tremendously to relax almost a sleep substitute for an hour or 2. Highly recommend it. I use the Calm app for about 25 minutes before bed.

All the above in combination and still it could take 6 hours before falling asleep for 3 or 4.

C B D Oil- started low. Helped initially but then I had a gut ache and almost diarrhea only to find out i was just taking too much magnesium. I dont think i ever really got to a therapeutic dose so i will try again. I just called and ordered some more and the guy said you need 1000 mg to 5000 mg to start in the first month to get enough in your system before it'll start to work. Then reduce to maintenance dose. Ok. I'm game. I really want to avoid prescription drugs cause long term they all lead to dementia. My research on cbd indicates its a great supplement in many ways. Nut it doesnt work for all. THC is not an option here yet. Wish me luck. Next up will be a sleep doctor and maybe drugs.

Whats your story?

Gailmary

bcincolorado · March 2019

Hi,

I had a "bad night" as I call them last night. Up until 3:30 in the morning and up by 6:15. After laying in bed for a long time turned on TV to try to get brain to turn off and maybe drift off. After 3rd 20 minute sleep cycle was bugging DH so came to living room. Sat here and watched TV here quietly.

Been on Letrozole for 3 years. Had Tomox before that for 5. MO said to finish my bottle of letrozole and then stop it based on breast cancer index test. But put me on B12 and on thyroid meds now since cancer has messed with that. SE of meds of course is---you guessed it---insomnia!!!!

Have not tired the melatonin but had thought about it. Not anxious to put more stuff in my body at this point if I can avoid it. Chamomile tea does nothing. No caffeine after 3 does not help either for me.

kathiemandrews · March 2019

I have reached the point I hate going to bed. I have never had this type of trouble sleeping. Insomnia does run in my family, my mom was terrible for wandering around half the night. It seems my brain will not turn off. If I use Clonopin I can sleep for a solid 7 hours but not sure that is a good long term solution. I am an eleven year survivor for which I am so grateful. It could also be my age, I will be 74 in June. So I guess I just need to find out how to accept this little trick my body is playing on me and how to deal with it. Thanks-- Kathie

Lumpectomy-- 3cm rt breast statge 2a no node involvement--4 rounds of chemo--Taxotere/ Cytocene--30 radiation plus 5 boots to site--

5 years Arimidex

2002chickadee · March 2019

Ugh, I had sleep issues before breast cancer, which certainly have not been helped by BC. I usually fall asleep okay between 10:30-11pm, but I wake up consistently around 4am (toooo early!), and sometimes do and sometimes don't fall back asleep. Things that help me: hard-ish exercise during the day (not just a walk, but working up a good sweat), meditating before bed (I use headspace), although sometimes that backfires and I fall asleep during meditation and then wake up, benedryl, prescription meds that zonk me out although I try to avoid those as they make it too hard to wake up. I've been waking up sweating recently, so I may try a few more acupuncture sessions which helped me with hot flashes and night sweats in the past. Haven't tried melatonin but was just thinking about doing so....

gailmary · March 2019

Chickadee, I wouldn't think melatonin would help unless you use the time release type cause you are already sleeping early in the night. The time release also helps later to keep you asleep. I was told waking at that hour could be an anxiety issue or even a blood sugar issue.

Good luck.

Gailmary

bcincolorado · March 2019

Good to know about melatonin. Just had that suggested to me and not anxious to put something else in my body.

Salamandra · March 2019

I've always had sleep issues and the tamoxifen has made it worse, I think mostly by wildly exacerbating my GERD issues.

I'm using trazodone now and it helps, though it doesn't fix things completely. I'm still trying to make progress on the GERD though.

I used to use Ativan long term for sleep. My doctor was all right with me doing that at very low doses, I think because the alternative of insufficient sleep is so bad. It was helpful for me I think because I had UARS, but now I have a good dental appliance for that so I barely use the Ativan any more.

Once in a blue moon I'll have a night that I just sleep clear through, and wake up feeling good. It happened on my vacation this year. It felt like a miracle from above. It's hard to wrap my head around that for some people that's just their normal baseline!

Salamandra · March 2019

Oops, I'll say part of the reason I used Ativan was because my insomnia was also for sleep maintenance, and I'd wake up around 3 or 4 and not be able to go back to sleep. Ativan is short acting. For a while I'd be setting my alarm for 2am, taking one, and going back to sleep. Sort of to get ahead of the insomnia.

gailmary · March 2019

I have had trouble with GERDS in The past. Not sure what fixed it though. Could have been gal bladder removal or instead of those awful antacids they prescribef i switched to over the counter Digestive Enzymes per my pharmacist suggestion!.

Im doing all I can to avoid more medication. Seems alot of it is as harmful as it is good.

Salamandra · March 2019

Hey gailmaxy,

Could you say more about the digestive enzymes you used that seemed like they might be helpful?

Right now I feel like I'm mainlining any form of ginger tea/ginger drink/ginger chew I can. I found this ginger drink in a local store (much much cheaper than on Amazon). I think it really helped the last couple of days. I had one after breakfast and one after dinner. The regular ginger teas... pleasant in the moment but I don't think they did so much good.

gailmary · March 2019

yep, thats just what you would ask for at the pharmacy. Digestive Enzymes. I tried a few different brands. I took just 1 pill a day of the ones from 21st Century brand. The others required more. Probably after a meal. Bothered me that a dr wouldnt suggest that but of course they wouldnt know.

There are several your body needs so a blend is best. They are Not the same as probiotics. Though those might help some too. What do i know. I'm not a dr. Let me know if they help.good luck

santabarbarian · March 2019

If your insomnia is 'racing thoughts' variety, or anxiety-related, I would definitely check out neurofeedback. I did it out of curiosity because it helped a foster youth who I mentor soooo much... she had a lot of anxiety and has remitted from neurofeedback. The system we both tried is "Neuroptimal." It is very simple and one-size-fits-all because it simply mirrors the activity of the right brain by giving auditory feedback. The R brain realizes it is being mirrored and it begins to modulate itself. In my case did not have depression or anxiety but my sleep improved *markedly*. No drugs, quick term of time (generally 10-12 sessions and you feel the difference in 6-8 sessions). And it lasts.

gailmary · March 2019

I'd not heard of neurofeedback before. It will be interesting if i learn more on Monday night when I attend a survivorship class for insomniacs. Afterward i will decide if i want to go to the sleep study center doctors who are presenting the class.

Two Weeks ago i stopped the letrezole to see if it would have any effect on my sleeping. I slept good last night without any aid. My PA and i need to decide if switching AI,s would make a difference. I dont think it would if insomnia is from lack of estrogen. letrezole is working fine for me and i dont want to swjtch to unknown side effects from another ai. I dont want to shorten the time I'm on an ai. How do you really know if this bad insomnia is a real side effect of tbe letrezole or an effect of it on your estrogen? CBD was helping fine earlier in the week.

gailmary · March 2019

An update. Stopping the letrezole for 2 weeks did little. I thought I needed more time but PA says no, yet I'm also taking faxlodex so that makes no sense to me. Dr wants yo keep me on just letrezole and xgeva come May. It's working so I agreed since my only side effect is insomnia

I am sleeping better. Typically i have a cup of extra sleepytime tea before bed. Also some cbd oil. That doesn't always do the trick. Sometimes I also meditate and sometimes if im not asleep 2 hours later I take a Deep Sleep pill. It seems my emotions get the best of me and I loose sleep if I am mad or worried or excited etc

The class taught me little other than I'm not a candidate for a sleep study. I might benefit from cognitive behavioral therapy for insomnia but since its also a hormone issue i wont go. Or is this the neurofeedback therapy you mentioned SantaBarbara? Id probably benefit from more meditating.

Thursday I'm taking a special introductory yoga class for insomniacs.

How are you all sleeping?

Gailmary

Irishlove · March 2019

I think I'm gonna be like Dorothy, not tricks in the bag. With MS, there is a lesion located in my brain that keeps me from sleeping. Two years of minimal sleep and I broke down one day in the neurologists office. Tried Ambien, AD's, etc. Mostly had nightmares that were worse then lack of sleep. Melatonin did not work. I hit on Benadryl and have used it for years. Once in awhile I wean myself off of it to see if I can sleep again. No such luck. The neuro recently gave me an RX for Tamazapem, which I can only take once every 4 days. It didn't work nearly as well as Benadryl, so it's still laying in the medicine cabinet. Well....I'm expecting to start Tamoxofen shortly. I'm 15 days post mastectomy and waiting for the MO's office to call with an appt. I read that Benadryl is absolute no-no. So I'm panicking as lack of sleep with totally push MS symptoms into overdrive. Any help or input is so appreciated.

Calling all insomniacs

Comments

Categories