Falling asleep when you shouldn't? : My tiredness... - LUPUS UK

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Falling asleep when you shouldn't?


My tiredness has become really bad in the past week. I sleep about 6-7 hours a night (never slept deeply) but now Im falling asleep or so tired my eyes drop ... last straw was I fell asleep in the car waiting outside the school to pick my little boy up .... woke up 15 minutes late after nearly all parents had gone!!! My poor 5 yr old though Id abandoned him :( ... I suffer with Fibromyalgia, Arthritis, Discoid Lupus (some systemic still being investigated)... I also have Sjogren's Syndrome along with Spinal nerve damage .. I dont know what to do .... Im hoping it will go away but none of my symptoms have gone away, just got worse. Im on Hydroxychloroquine and Pregabalin ... I only take them in the morning about 6am and then at night before going to bed ... Im not on any pain relief at the moment as I was told to stop the Tramadol & Amitriptyline ... Im just taking Codeine & Paracetamol when necessary ... until the Pregabalin settles in and then I have to see my doctor for more meds in between .. I also take iron tablets for my anemia ... I really dont know why Im coming all over sleepy and fall asleep ... its frightening :(

11 Replies

How long have you been on Pregabalin, because that is one drug that causes drowsiness. You might also be experiencing a flare - I get similarly sleepy when a flare is lurking.

Elle-26 in reply to Purpletop

Hi Purpletop, going into my third week ... never experienced this type of symptom before ... I cant cope with it much longer or I'll have to give up driving then Im stuffed as my boy needs to get to school which is about 4 miles away ... Ive just been reading on here about Pregabalin and it isnt nice ... bit scared now :(

Purpletop in reply to Elle-26

I tried Pregabalin too and I ditched it because it put me to sleep and made me feel vacant. Not everyone has the same experience with it, there are people on this forum that swear by it. I'm usually all for giving drugs a chance to work but this one scared me too.

But don't stop abruptly - this one is like steroids, you need to come off it gradually. Speak to your doctor and explain you can't function this way. Ultimately no one can force you to take any drug if you don't want to.

I reacted to pregablin too. I swelled up like a balloon. Am now on 75mg amitryptaline for the pains but the exhaustion you describe happens to me. When I'm bad I can sleep really deeply for 12 hours plus and still need my bed! Exhaustion signals a flare for me.

Hiya - just wondering how long you've been taking Pregabalin for? Only I take Gabbapentin and for the first 3 weeks or so I did nothing but sleep, I felt like a slug! Only they are both similar drugs, I almost gave up taking it but it has settled. When I had the drug increased again the same thing happened, but I'm ok now. It's awful to be that tired all the time, I can relate. I always set alarms on my phone - even for school runs. Wishing you well x

Elle-26 in reply to Jo883

Ive been on it three weeks .. just about to start my 4th ... even alarms dont do the trick ... I slept right through the morning alarm ... It affects me driving, so have to get off of them ... I feel they are going to comatose me ... Im not all there and really have to constantly think what im doing ... Im only on 100mg x 2 a day ... but Friday I should start taking the 300mg ... no way! ... Cant put my life at risk ... hopefully see a dr tomorrow ... they couldnt fit me in with my other Dr who knows me until the 27th!! :(

Jo883 in reply to Elle-26

Hmm that sounds excessive - in that case when you go to your Dr, maybe chat to him about trying neurontin/gabbapentin as just by tweaking the meds you may get the right balance for you. I started on 100mg once a day for 3 weeks to start and to become accustomed to it, it then went up to 300mg per day and now I'm on 600mg - after 3 weeks it had started working well. You know in yr heart if something is not working for you so yr doing the right thing by discussing with ur Dr. Some people on this forum have tried Pregabalin and say it really helps others are on Neurontin and prefer it. Good luck!

I have fallen asleep in many places and at many times when I really should not have. Once I was under a car with blow-torch in my hand. I have slept on the bosses office roof at lunchtime, I have fallen asleep at the dinner table and on the lawn at a garden party.

I got a great job down at a college which was based at Shoreham airfield. Took lunch outside in my car looking at the planes.. and fell asleep for an hour on my very first day.

The arms of Morpheus are always ready to welcome me.

Hi being on Pregabalin you should have been warned that it would have made you drowsy, being anemic will be making you feel tired but if you are indeed suffering from systemic lupus as you say you are being investigated one of the very common symptoms is chronic fatigue so it is hardly surprising you are sleeping during the day, I do it frequently most often when I want to watch something on the television then I miss it or when I'm on the train - I have been woken up by the driver when the train has terminated and the driver asked me where I wanted to get off!! :-o Since I have been taking Methotrexate and folic acid I have not been as bad my other SLE symptoms have reduced too, I can't get a driving license due to my health which is a shame as I could do with it so I hope the symptoms ease for you

Good luck

Madmagz x

Elle-26 in reply to madmagz

Thank you so much madmagz .. Ive phoned my doctor and had a consultation over the phone to come off the Pregabalin over three days and then start on a higher dose of Amitriptyline ... Ive got an appointment to see the doctor on Monday morning to have a chat ... Im in so much pain and my first sign was chronic fatigue .. its only been a year nearly ... just been through so much and been strong for so long ... it does affect all aspects of our lives ... Im just glad Im coming off of them ... dreading this weekend :( Thinking of you ... I know its so hard to stay positive but I just grab the moments when I can smile .... -x-

madmagz in reply to Elle-26

Hi Elle glad I could help, sounds like that will be the best thing for you. I hope the weekend was not too bad for you and that you manage to get some form of pain relief that works for you soon, I am very glad that I am under the care of a pain clinic they have been able to supply me with a TENs which eases some pain.

All the best my fellow lupie, keep your chin up sweetie, and I am very lucky I am a very positive person I do stay positive and try to keep smiling,

Madmagz x

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