I haven't been on here in a while but I wanted to maybe offer a little bit of hope to anyone who has been struggling with this condition and felt that they had no other options left to them.
I had a major flare up of my RLS about 14 months ago and was prescribed Gabapentin. It took about 2 months for me to get my symptoms under control but I still suffered horrendously with insomnia.
I was averaging between 40 mins and maybe 2 hours of sleep a night and my mental health severely declined. I started to struggle with crippling anxiety and couldn't go to work or even leave the house sometimes.
As the months went on I became more depressed and more withdrawn. Even though I couldn't sleep I took to my bed.
I had previously been on Sertraline for about 4 months and felt that it wasn't really doing anything and so my Dr gave me Mirtazapine but I was to take the Sertraline every other day till I had ran out.
The Mirtazapine made me crazy almost Bipolar like so I got an emergency phone appointment with my GP and they told me to stop both the Sertraline and the Mirtazapine. I had been taking the Mirtazapine for 6 days.
My mental health and my insomnia were beyond horrific and I honestly just wanted to die. I took 4 overdoses. Not enough to kill me but I wanted to end up in a coma because in my mind this was the only way I could sleep. They knocked me out for days and at one point I was vomiting blood.
I was having alarming episodes where I had RLS in my whole body and panic attacks at the same time.
My GP had referred me to the Mental Health team and I had an appointment with a CPN.
I didn't feel like I was making any progress and was absolutely desperate for some help.
After one of the body RLS/panic attack episodes my husband was so frightened I was going to kill myself he rang 111 who advised him to call 999.
I was taken to A and E in an ambulance where I was treated very poorly.
Because I didn't hear voices in my head or was having hallucination they said I wasn't considered a risk.
They didn't believe I had overdosed and even though I begged them to admit me they said they don't admit people for insomnia.
They allowed me to walk out of hospital with 14 sleeping tablets which my husband was unaware of. I also had Gabapentin and codeine hidden around the house as my husband had taken control of all my meds.
Luckily I already had an appointment booked the next day with my GP and my husband was able to inform them of what had happened.
Again I was given an emergency appointment with the CPN where I told them if they didn't help me I would die.
It was only after I had threatened to buy horse tranquilizers off the street or Heroin that they advised my GP to prescribe Venlafaxine and Olanzapine.
Cut to a week later and I am sleeping 8 hours a night without waking up and I feel like a different person.
I felt like I had no options as sleeping tablets trigger RLS and anti-depressants trigger RLS so for me in my mental state either a coma or death were better than the torture I was going through.
Saying that, mental health services are beyond dire in the UK. After what I have been though and the fight we had to give for some one to take me seriously I can totally understand why people throw themselves off bridges or in front of trains.
Written by
Joannebbk
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I am sorry to hear what you'be been through and can fully appreciate what it's like to want to be in a coma, though not necssarily dead. I've never been suicidal but there have been times when I've just wanted to escape what I call "the burden of conscsiousness". Like you at times I've taken to my bed and have been afraid to leave the bedroom except for bodily functions.
I've always managed to get through somehow, but I know when you're suffering sleep deprivation it makes it extremely difficult to deal with anything. I've been there too.
I'm so glad that you've found a level now and that the Venlafaxine and Olanzapine are helping. Although these may make RLS worse it is a good option as your depression/anxiety certainly takes precedence over your RLS. As you're sleeping better this will relieve your sleep deprivation and this could have a positive influence on your RLS.
Obviously, it your RLS could have been better managed this may have prevented such a crisis.
I akso think you need some psychological therapy alongside the medicines, which brings me to your second issue, i.e. the dire state of mental health services.
I think it's absolutely appalling to be told, you're not hearing voices so you're not at risk. If you're feeling suicidal then that's the reality.
To say you're not is like telling somebody, "you can't possibly have a pain". Incidently, a doctor once said that to me.
There was recently another thread on this site titled "suicide". There wera lot of responses, so it's obviously a very relevant topic and quite a common experience. So I hope you don't feel too much that you are on your own with this.
I am having regular appointments with my CPN and I have a number for 1 to 1 psychological therapy. So far my RLS is still under control with the gabapentin and codeine so I'm hoping it will continue like this.
You are a true survivor and your husband is so caring. Glad you had his support through the ordeal. That can make the difference from you being able to share this story and us never hearing about it.Curious. What dose of Venlafaxine are you taking? I'm glad it worked so fast for you.
Im on 75mg of the Venlafaxine but it can be increased to 150mg after 3 weeks. I will stick to 75mg for as long as possible though as its doing a amazing job for now. The Olanzapine is 5mg.
Hi, thank you so much for being so open about what you have suffered. It really helps people if they know they're not the only ones who have suffered like this.
I too am on venlafaxine. I went off anti-depressants two years ago because I felt they made my RL worse. I then struggled to remain on top of things, being very 'delicate' and not at all resilient; and it was only over Christmas this year when I realised that I was struggling to want stay alive and decided I had to take a risk and go back on an anti-depressant. Thankfully, I'd been on buprenorphine for 12 months and that has really helped my RLS and so I wasn't plagued with that too. I was terrified of going on Venlafaxine and thought it was bound to trigger my legs but thankfully, it hasn't. I'm on 75mg per day and it started to help my depression in as little as three days- I could see there was hope at least after that.
I've now been on it since January/February and have to say I'm a lot more 'solid' and resilient and happily enjoying life. My legs continue to be good 90% of the time which is brilliant and I can cope with what life throws at me. Unfortunately the buprenorphine makes me alert and I am sleeping very badly most of the time, however, it's better than with 'legs' as I can lay in bed, warm and snug and relaxed, even if I'm not asleep.
Good luck with your new regime. I do hope it continues to help- and I too would suggest having some psychological support as well if you can- I would be in a far different space if I hadn't had that too.
Thank you for sharing your story. It can help to be reminded I'm not the only one suffering from bad insomnia at the moment, and that with the right help we can all get our lives back. Best wishes for the future.
My ONLY problem was lack of sleep because of RLS. But I, too, was harboring suicidal ideation as a result of that lack. I finally found a knowledgeable and courageous doctor who prescribed me low-dose (2 x 5 mg daily) methadone, and BOOM, my problem with lack of sleep was over. Thank you for sharing!
It's really hard to explain the sheer hopeless of lack of sleep to someone who has never endured it for long periods of time. My hubby literally falls asleep with 30 seconds of his head hitting the pillow and snores like an absolute arsehol Occasionally he will have the odd night where he hasnt slept solidly for about 9 hours and he is in such a shit mood Im sure the mental health team felt like I was exaggerating my sleeping for 40 mins a night! I had previously been give Zopiclone which did nothing except make me more drowsy but no sleep. When I was taken to A and E the CPN said she had never met anyone that hadent slept after taking Zopiclone, like I was totally lying and making the whole thing up.
Joanne, thank you for sharing you harrowing tale. I know what it is like to become suicidal on the back of sleeping problems. You are a very brave and strong person to have survived it. It brought me to my knees and caused a nervous breakdown in my case. Like you I have a wonderful partner who has seen me through the worst of times. Thank God for those who love us! I also understand your frustrations with the healthcare system. I have to be on antidepressants, which causes RLS for me. Here in Korea, the doctors prescribe benzos for me, and I tolerate them well. But I have a big fear of being stuck in Korea forever because of it. I know that doctors in NZ regard benzos as dangerous and addictive, and are loath to hand those out for any length of time, if at all. So I fear never being able to move back there because of the healthcare culture. It is a shame that doctors are so ill-informed about RLS and how to deal with RLS patient's problems. But keep going forward. Bless you!
I can totally relate to that. My husband is in the Royal Air Force so we move around roughly every 3 years. So far I have been extremely lucky in the sense that all my GPs have recognized my RLS even if they havent understood the extent of it. So I have always been able to get medication for it. If I get a GP that isn't sympathetic to my condition I dread to think how it will pan out.
Joanne, thanks for your bravery in sharing your story. I'm glad you are finally getting some sleep. It's terrible that you have been let down by the lack of mental health services and the complete lack of knowledge about RLS in the UK.Did you have depression before RLS or did the lack of sleep and RLS contribute to the depression?
I know the gabapentin didn't work for you at first and see you are now taking codeine as well.
I had previously had depression quite a few years ago but I had managed it my self in the past. I had tried Prozac and Citalapram but neither really did anything and the Citalapram is horrendous for making RLS worse. My RLS had actually been under control with just Codeine and supplements (magnesium, B12 and iron) before the flare up a couple of years ago. I suspect me starting the Perimenapause and my hubby being deployed over seas with the military brought on the flare up. Once I got my RLS under control with the Gabapentin I had hoped my insomnia would sort itself out. As the weeks and months past I just became more and more withdrawn. What I hadn't mentioned in my write up was I also starting vaping THC out of pure desperation to get some sleep. It didn't really work and before I knew it I was vaping nearly all day every day just to escape the torture. Now that I am sleeping I am hoping to wean myself of the codeine. I have already dropped down to 2 a day instead of 4 and Im completly off the THC. I may even be able to reduce my gabapentin but that is way off in the future. Im just enjoying sleeping like a normal person for now. Jo xxx
SLEEP IS EVERYTHING-so critical to our mental and physical health. Thank you for sharing and I am very glad to hear you are doing so much better. You should not have had to fight for help with such a serious and dire situation. It is sad how we all seem to have to fight for every little bit of help for RLS. Thank you to everyone who posts on this forum!
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Occasionally he will have the odd night where he hasnt slept solidly for about 9 hours and he is in such a shit mood 
Duloxetine to Mirtazapine 
Insomnia - Ropinorole & Pramipexole the same?
Peaceful nights at last!
Losing hope in Gabapentin for RLS
RLS Improving, Insomnia Worsening
