Insomnia, how do you deal with it

[BrianCrelling]

Ive just got on top of another flare up of my WG. For the last couple of months I've been suffering from insomnia. Get off to sleep ok but after about 3 hours Bing awake. Really need sleep but reluctant to go to Docs not sure about sleeping pills.

[Dbis22]

Hi Brian

I have suffered from lack of sleep for a long time. Despite crippling fatigue which is a little understood component of WG I found myself waking regularly through the night and finally giving up trying to sleep very early in the morning. I was diagnosed with depression (by a shrink) and also suffer from anxiety. My fairly hopeless sleep patterns were attributed to this. I have ant-depressants for years. Initially, they did the trick ..... now not so effective.

To be honest, I don't think you should worry. Go to the Docs and talk to him. Most often, the pills are better than the problem ...... though not always!

Good luck!

[PatriciaAnn]

Hi Brian

I've had this problem since being diagnosed. Even after 8 years I wake at least once in the night to pay a visit, and I can't sleep after about 5.30am. Then there is the problem of actually getting to sleep. That has got better over the years but occasionally I am still awake at 2 or 3am.

I don't drink coffee after about 7pm. I take my Azathioprine immediately after dinner (don't know if the Aza contributes to the not sleeping). I try not to sit at my computer for an hour or so before going to bed - not that I succeed. I find that if I have lots of things twirling inside my head I can't clear my head and I can't sleep.

I always take a cup of hot milk to bed (probably why I need to visit the loo) but I find it calms me. I also have some sleeping pills on hand. I don't take them regularly, but if I'm still awake at 1pm I take half and have another cup of hot milk and that usually does the trick. As long as you don't rely on the pills every night things should get better.

Why not speak to your GP. Mine was very understanding.

Patricia

[Tony-LakeDistrict]

Hi Brian I have Microscopic polyangiitis, in the first year & a half of treatment I had most nights with no sleep, if I did get some sleep, it was for minutes, rather than hours

After a time I got myself an ipod and put hours of listening from bbc7 comedy etc, I found myself dozing, it was not sleep, but i found myself much more relaxed & able to cope with each day.

Three months into treatment I also was diagnosed with depression & was given Amitripyline, 8 days later after talking to my wife, I took no more, and felt much better than the previouse 8 days, I was just tired not depressed, shortly after I got the ipod.

Four & a half years on I can still have a sleepless night, but all seems good with my world

I hope this may help in some small way. As they say the only way is up

Tony

[runnerwithwg]

Hello, I have had WG and got chronic insomnia too.

Has your GP referred you to a sleep clinic to may sure there is not a secondary cause like OSA or one of the other less common sleep disorders? Also do make sure that you are trying to sleep in the very best conditions. Things like black out blinds, room temperature, noise levels, ventilation, comfortable bed, restless partner, regular bed times light off time, bedroom used just for sleeping etc can make a difference. If all that has been tried and a sleep disorder ruled out, then do not suffer sleep deprived - get some treatment soon, or else you will only get worse.

To instigate and maintain the little `sleep` I manage to get I use melatonin (Available on NHS - called Circadin) which together with another hypnotic and an anti-depressant have proved to be the only combination that works for over 10 years (I have tried everything else including natural treatments). For me it’s a balance between getting some sort of light sleep and not feeling too awful to function the next morning. I do try and keep the doses as low as possible and even cut tablets into quarters if a smaller dose tablet is not availbale. That way you can wean yourself off the drugs when you start feeling a little better. After all who want to be on medication for longer than they need to be, and drug interactions are a bit of an underknown entity for individuals too. Your GP may have to get permission from the PCT to prescribe Melatonin and as there does not appear to be too much clinical evidence to support its use, so you may have a battle on, but be assured and persevere as it has certainly helped me.

Hope you get a good night soon!