I tend not to go doctors for everything! I don’t like to be a burden really and I do try self help, but I’m exhausted due to this on going sleep problem I’ve had for about 2 years now.
I full asleep exhausted, and wake up at stupid o’clock wide awake. I take 25mg Amitriptyline nightly. The longer this is going on the more worn out and fed up I’m becoming. My family are telling me to go doctors and ask for a referral to a sleep clinic 🥺 I didn’t know such thing existed.
Has anyone tried this angle or cbt therapy? This mummy really needs to start sleeping again to manage better x
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Lisalou19
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Hi, Lisalou. I had the same problem little or no sleep for months [I also have a stoma which keeps me awake as well as lupus] I ended up going to GP for anti depressants. I got fluoxetine which I found not only lifted my mood but I started sleeping better. Then I was given peppermint oil capsules for help with my stoma, the peppermint is also a muscle relaxant and I have had much better sleep with them both. It's not "normal" sleep I still wake up a few times but I am getting better sleep. Unlike something like amitriptyline mine don't make me drowsy so I can wake if I need to. I guess I now just need time to get used to a more normal sleep pattern. I don't need the fluoxetine for depression now but I take it for fibromyalgia instead. If you get the peppermint oil take it with a cold drink, hot drinks too soon melt the capsule.
the fluoxetine I get from GP he also gives me the peppermint oil but I think you can buy that. I haven't looked to see who sells it because we get free prescriptions here in Scotland.
Interesting, someone mentioned this to me the other day.
I really want to get off this Amitriptyline, my medicine cabinet is fast filling up, I’m 37 not 137 🙄. I used to be such a good sleeper, I miss that part of me so much. X
After taking zopiclone for a bit without success, I had a sleep study done last year - a night wired up in a sleep laboratory. According to my neurologist, the majority of people who get referred to a sleep lab turn out to have sleep apnoea and there are some effective treatments for that (often including weight loss and/or devices to keep your airway open at night).
But, I didnt have this, but ordinary "chronic insomnia". Obviously, being on steroids means elevated cortisol, and that's a recognised cause.
The neurologist gave me a script for melatonin, but said the research suggested it isn't very effective (and it didnt work for me). In his view, only "sleep CBT" has a good evidence base. I have used CBT techniques - and will be seeing the neurologist to discuss progress this Friday. (spoiler - there hasn't been much). For me anyway, the basic problem is that my whole metabolism has been messed up by both autoimmunity and the drugs I have to take to control it. If the neuro has any brilliant insights on Friday, I'll let you know! x
I do have problems with my throat and constant problems with my nostrils, so maybe that could be a problem.
I feel like it’s something to do with inflammation in my brain, as when I wake up I’m fully alert like I’ve just slept a whole day. Only this feeling is short lived.
I did look into cbt for sleep but it was so expensive. The reviews I’ve read on it are amazing and I tried it myself once before for my fear of spiders and it got loads better.
Please do let me know if you are given any further advice. Sleep is key in life
About melatonin, less is better. In early studies, researchers found that higher dosages (above 1 mg) were less effective, but there were advantages for companies to sell it at a higher dose, so in the US, the most common dosage sold is 3mg. I buy 1 mg sublingual lozenges and break them in half, and take them about 20 minutes before I go to sleep. These don't solve my sleep problems, but they help.
I just saw your question, and hope you have found them without me by now. In the US, the FDA banned the sublingual kind, so they now come as lozenges or capsules. I use Source Naturals, which I get from iHerb.com. i may try Klaire Labs when these run out, since they advertise theirs as "soft lozenges," so I hope they might actually dissolve.
When I had the exact same problem, it was connected to depression ( post natal) but was always there when I was under a lot of stress. The worst part was feeling I could sleep at last, but by that time it’s 6am and just about time for work.
Apart from zoidem from time to time, I often felt it helpful to listen to the BBC world service or an audiobook.
I suffered from extreme depression when my son was botn and I slept so much. All day and all night. I feel like there’s a light bulb in there that is programmed to switch on at the same time each morning. Sad thing is though on the rare occasion I do sleep through I wake up feeling worse than when I’ve slept 5 hours 🙄x
Have you tried listening to a sleep meditation whilst lying in bed. There are lots of free ones on the internet. I have also started to eat a banana about 2 hours before I go to bed, they are full of magnesium which can help you sleep....well it seems to work for me at the moment
I do listen to meditation, I have the calm app. I can fall asleep but can’t stay asleep. I like the banana idea but I can’t stand the texture of bananas 🤮. X
I use liquid melatonin and I've found it works really well (I only take up to 3mg a night, sometimes not that). I buy it from a European outlet. The NHS only prescribe it if you are over 55, which I'm not. But it's not expensive.
And I have the worst insomnia.
What also helped was balancing my hormones (progesterone) and taking low-dose naltrexone. But the melatonin tops it off.
I've had CBT before, once for pain clinic, other because of depression. They tend to focus your mind on other things, I still go back to it occasionally, what have you got to lose.
CBD Oil from Holland and Barrett really works for me after years of insomnia which Lupus/Sjogren’s made worse. Two drops under your tongue (worth the bad taste). Good luck
I sweat like a beast at night. I also love a heavy comforter. Catch 22 I suppose. So my husband bought me an Ooler which is a mattress topper that has cold water run through it. I thought it a waste of money.....until I used it. I now sleep like a baby. My legs are minimally restless and I sleep through the night.
I also have raging GERD due to pretty bad esophageal dysmotility so I use a 5-6 inch wedge under my mattress.
Just some thoughts. Sleep lab is good if your getting hypoxia at night. They can help you develop better sleep habits but lupus leaves me guessing all the time. Some weeks are better than others.
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Advise please guys x
Reducing plaquenil dosage and the effects. 
Loneliness 
Does Lupus cause dry eyes? My eyes get extremely dry while I sleep. I mean they feel like they are full of sand when I wake up quite painful
Feel so alone :-/
