Advise

[Sleepless2521]

I have recently moved to a different area and changed doctors. My old doctor has me on a repeat prescription for zopiclone 3.5 mg for restless legs syndrome ,fibromyalgia and tinnitus which caused severe insomnia. I have been on it about eight months and I take as and when necessary. Honestly it has changed my life. I can now go to work because I’m getting some sleep in the night , I can go away for weekends go on holiday and my husband and I are now getting on where as previously we were close to splitting up because of my severe insomnia. However my new doctor refuses to prescribe zopiclone for me and insists I go to sleep clinic or hypnosis or try amitriptyline . I have tried ALL of these throughout my life, I’ve tried everything and nothing else works for me. . I told him prior to having zopiclone my quality of life was non-existent but he’s adamant ...now I’m thinking now I have to move house again back to where I was, just to get a more understanding doctor. I’m aware you can get used to these meds and they would no longer work but I’m sensible I only use when I need too and I’m 63 years old so know what works for me ...Advise would be very welcome 🙏

[Hidden]

Gosh, I'm really sorry to hear this!

I understand the doctors reluctance to prescribe Zopiclone long term.

If you're unhappy with the conduct of a doctor, there are things that you can do. However that would take time and wouldn't necessarily end up with the result you want.

It may be that have to consider alternatives.

It's complicated since you mention 3 conditIons, RLS, fibromyalgia. and tinnitus. Zopiclone however is just a sedative to help sleep, hence I can see why the doctor suggested a sleep clinic.

If insomnia is an independent problem then a sleep clinic would be appropriate, I guess.

If your insomnia is dependent on the 3 conditions, perhaps not.

You don't say if you take any medication for the 3 conditions. The medications are different for each. If the 3 conditions were all effectively treated, separately, I wonder if that would help you sleep.

I read you have tried ALL of these, but have you tried Gabapentin or Pregabalin? These are licensed for seizures, but can be prescribed for RLS and fibromyalgia, nerve pain and anxiety. They also promote sleep.

The standard medications for fibromyalgia, amitriptyline or an SSRI, hopefully you know, make RLS worse.

It depends on what's causing your tinnitus, but apparently gabapentin can help with some forms of tinnitus, but not others.

How you manage to get a prescription is another matter.

I imagine it depends on whether your doctor is willing to engage with a discussion with you and consider all your issues, not just sleep. You could try giving him some information about Gabapentin/Pregabalin and their use for RLS/Fibromyalgia. You could ask for referral to a specialist, this would normally be a neurologist. Long waiting list! A sleep clinic might be faster or you could see a neurologist privately. You could pay for a consultation, but then the neurologist could advise your GP.

As regards insomnia, there are herbal remedies that you could try, but possibly more effectively, if you've not already tried, there are "sleep hygiene" measures.

this might help

medicalert.org.uk/news/2018...

I've suffered insomnia for most of my life. RLS made it worse. It's not entirely effective but I 've found sleep hygiene has made a significant difference, especially exposure to daylight and the rule about not lying in bed if you can't sleep.

Not easy this time of year.

I do sympathise with what must be your desperation. I was in a similar position earlier this year, suffering sleep deprivation. My doctor discussed things with me at length, admitted knowing little about RLS, would only prescribe 10 tabs of Zopiclone and advised me to see a private neurologist.

I have resolved the problem, but my situation is different to yours.

I hope this helps.

[Sleepless2521 in reply to Hidden]

Thank you for replying to me. I have tried sleep clinic I was referred some years ago didn’t solve anything. I have had gabapentin in the past and it was pretty ineffective and the side effects were just awful. Over the counter sleep meds give me rls as does amatripaline so avoid both. I have always had bouts of severe insomnia all my life so badly It made me contemplate taking my own life at it’s worst,my life was so awful. Of course I was then put on anti depressants which I have managed to come off after 7 years of taking since being given zopiclone. Which made me realise I was depressed because of the insomnia , not as my then gp suggested suffering from insomnia because I was depressed!! I can cope with the Fibro pain during the day I find it’s worse at night again helped by having a good nights sleep. If I need a painkiller I stick to milder ones as codiene and tramadol wreak havoc on my stomach! I have had private hypnotherapy acupuncture cbti and nothing works . Yoga ,thai chi you name it I’ve tried it. My body can be exhausted but this damn brain of mine is never still enough to allow sleep unless I take something to help shut it down . I just dread the thought of going back to that person who could hardly function a virtual recluse Because of lack of sleep 🤦‍♀️

[Jaydee1507]

Really sorry to hear this. Doctors can be very weird about sleep meds though. Is there a different GP at the same practice you can see? Does he realise how bad Amitryptaline is for RLS, that's crazy he's suggesting it. They seem to think it's a cure all. Ugh.

if the above isn't an option or doesn't work I'd go back to the sleep clinic I think. That, or go see a private doc and get what you really need. Terrible if you've been using it sensibly though.

[Sleepless2521 in reply to Jaydee1507]

Thank you for your reply and I will seriously think about going down the private route if I don’t get any joy with the NHS doctor. I had an appointment this morning to discuss this problem I need to be rang up 10 minutes before to say the doctor was off sick🤦‍♀️ I wonder if it was due to lack of sleep😂

[ironbrain]

Not finding a doctor who would understand that I needed something to help me get to sleep and stay asleep at night, or even one that knows well enough about RLS, always comes up strongly in my mind whenever I think of moving.

I really can't wait for the day you go to the doc saying you think you are suffering from depression, and s/he says I'll prescribe you some sleeping pills and an anxiolytic so that you can sort things out and get your life back on track! Of course, the big problem is the 28-day limit on the licence of these drugs. I'm beginning to wonder if it doesn't have more to do with road safety – our roads are among the safest in the world, believe it or not (I only discovered that recently) – than medical/pharmacological matters. Something like we pay tax on a bottle of wine that's among the highest in the world (where wine is legal).

Having said that though, I think tricyclics like amitriptyline are very good at helping with nerve pain (I wouldn't want to take them for any other purpose), so if your doc is offering you some for FM, then you may not want to turn your nose up at them too much. If I needed analgesia after any dental work that might affect a nerve, I'd be right after them.

[Sleepless2521 in reply to ironbrain]

Thank you for reply ...The problem with amitripyline is whilst it helps with pain it sets of my restless legs . I took it some years ago and had a terrible time. Unfortunately a side effect of that particular drug. I wish they would Just treat each patient individually rather than a one size fits all attitude. I have a very healthy attitude with my medication but of course they don’t know that. Of course they don’t have the time to get to know each patient , I understand what pressures are put on the gp and I know this is going to be an ongoing fight 😢

[Marrob]

Hi, as Jaycee has suggested it might be worth trying a different GP in the practice. I had this problem, I have been on tramadol for a good few years for RLS and find it works very well! At the last six month review a GP I don’t normally see refused to continue the repeat prescription! I was very angry and saw a different GP at the same practice and it was passed no problem as it always has over the years! There’s always one ‘rogue’ doctor who thinks he knows better! Worth a try before you go down another route, good luck!