Does anyone else suffer from this?: Hi I was... - Behçet's UK

Behçet's UK

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Does anyone else suffer from this?

Chris4clark profile image
12 Replies

Hi I was wondering if anyone else gets nights when they just can't sleep even though you are completely exhausted I haven't slept for three nights so the next day all I can do is rest I try not to go to sleep in the day as it will be a viscous circle today I had half a hour so again iam wide awake I have stayed awake the rest of the days so I can't win plus iam tearing itchy all over my body 😢 I don't know wether it's a flare up of the Behcets or it is something to do with my epilepsy if I get so tired I have a seizure and that's it for a week totally wiped out can anyone help please totally fed up feel like crying.

12 Replies
Solbs profile image

I often find difficult when there is remarkable weather change, especially where I live in the part of the world where temperature may vary from one extreme to another. Should consult with your doctor and ask for sleep pills that does not affect your liver.

UKADMIN profile image

Morning Chris, If you don't have an appointment coming up with your specialists, then you may want to talk to your GP or ask for an appointment to talk about these symptoms. Good luck and let us know how you get on.

Best wishes to you.

2106 profile image

Hi Chris, I have this, I will go a week or more without sleeping more than an hour or so a night, then it will settle down. I never sleep through the night may be 3 times a year if lucky. When I don't sleep I lay awake and fidget, I try not to get up and have a cuppa as this get's into a habit very quickly. If not sleeping I have a nap in the day as I just can't manage otherwise. I think if I am overtired my sleeping pattern gets worse and I sleep badly. Try and have a nap and see what happens, we are all different it may help. I find being tired only makes things worse.

All the best Biddy

Chris4clark profile image
Chris4clark in reply to 2106

Hi Biddy

Thank you for the message this sounds bad but iam glad it's not just me that is like this it's been cracking me up my problem is iam quick to blame my epilepsy for a lot of how iam feeling it was my partner who said to check on this forum to see if anyone else has the same symptoms now I have a few more answers. All that a side I just wish I could have a good nights sleep and this itching would stop 😔X

2106 profile image
2106 in reply to Chris4clark

Hi Chris, some of the comments received are really useful, do try cutting out coffee, tea, alcohol not eating late at night you should try keeping a diary and see what happens. You may find a pattern. I go down the route that I eat organic produce, we grow lots ourselves, we have a spring for our water. I feel the less chemicals that you put in your body the better you are, it works for me so I stick with it. Also something may agree with you for a few months then suddenly you get a reaction to it. I am forever changing what I can eat and drink. Also I did have itching years ago so I use organic coconut wash which really helps the skin, organic shampoo and conditioner, natural washing powder, anything that I put on my skin is natural, it could be something very simple like washing powder so give it a try. I also take Manuka honey 12+ for my inflammation every morning. I was also very deficient in vitamin D easily checked with a blood test, now I take supplements every day so that really helped. May be worth checking. Not everything will work for everyone, all trial and error but with natural products no nasty side effects. Also the same with Behcet's we put most things down to that which is natural. If things don't improve do seek medical help. All the best. Biddy

billi profile image

I know how you feel I sleep about I in 3 nights. Mine is due to pain and not being able to find a position that suits and if I do manage to fall off as soon as I move I'm awake again trying to find another position. I have tried soft pillows, hard, feather, arrow, oblong, square you name it. I have had some success with my meds, changing the times I take them with or without food etc.. I also itch a lot, especially my head, feet and back. But you also have to deal with epilepsy, that's a tough one. Have you spoken with your doctor about the medications you are taking and how and when you take them.

I also push myself to a long walk with my dog every day, rain or shine as I think in the fresh air is good for us all round. I do some light exercises which do help from stiffening up. Also have you changed your diet at all especially tea and coffee. Do speak with your doctor or consultant as there is nothing worse than being tired all the time and yet not sleeping.

Let us know how you get are not alone.


Dr-CJA profile image
Dr-CJA in reply to billi

Yes Billi, I've gone caffeine free too. I drink red bush tea, green tea. Jasmine tea, or at a push decaff black tea with unsweetened soya. The red bush and green tea are great antioxidants.

Both caffeine and alcohol have the same negative effects with regard to sleep. Eating just before bed is a complete no no too. Better to eat a minimum of three hours before bed time.

I also agree exercise helps. Yoga and Pilates classes have been an absolute godsend in managing my back and joint pain, mobility and flexibility. I now also hike and take dance classes which really help. Even if you only manage 20 minutes a day it will help. I do yoga/Pilates for about 7 hours a week, with 2 rest days in the week. But build it up slowly if you've been inactive for a while. Your doctor can refer you to the hospital who usually do a 6-8 week program to get you started. I find booking a class motivates me to do it even when I'm.exhausted. And I always feel better for doing it too. Having gone from not being able to do anything and being too tired and in pain to even carry the supermarket shopping to the car, Now being able to hike over 10k, cycle 25k and be able to manage power yoga moves and dance again has transformed my life for the better. Yes I'm tired, yes its difficult, but I don't let it stop me. It took about three years to build it up and a huge amount of personal effort - but it is worth it. Good luck.

Dr-CJA profile image

I can go many days without proper sleep. I think the worst stint was about two years. I often go several days without more than 1.5-2 hours per night.

I will not take sleeping pills from the doctor, as the side effects are too unpleasant.

instead I manage it more holistically. I use herbal relaxant occasionally and self hypnosis. Hypnosis relaxes the mind and body, so that I can still function and manage my working day. I nap in the afternoons at weekends..

If I have something important at work then I will take a melatonin tablet (much better for one than a sleeping pill which are highly addictive and leave one like a zombie) and that helps.

Also make sure you have enough magnesium in your system, as a lack of this will affect your sleep. I take a daily magnesium tablet in the evenings before bed, as this also promotes your sleep hormones. Epsom salt baths are also good, as the body will absorb the minerals naturally. Also I use a magnesium oil spray with essential oils in it to promote healthy sleep (I spray on the back of my neck and shoulders). This way I can usually guarantee between 3-5 hours minimum sleep every night these days and can function on that. If I've got lots on socially I have a nap after work which gives an extra boost. If I'm going dancing then I'll have a cup of organic blackstrap molasses (a heaped teaspoon dissolved in hot water) to pep me up.

So, to summarize - I find it much better to manage the sleeplessness with complementary herbal and natural resources and a healthy meat free diet - as its much easier for the body to process. Good luck.

ZakStuttard profile image

I've struggled with sleep mainly due to high doses of prednisolone and the anxiety that came with it. Lavender oil in a candle burner and a herbal tea from Asda called snore and peace helped. I took zopiclone prescribed by doc but even stayed awake through that and felt out of it. My mind won't switch off sometimes even if I feel rested and relaxed in bed. I went 3 days without sleep and was going crazy my wife and family were on eggshells around me. Its hard to cope when the world gets to switch off for 8 hours and you can't. Hope things improve soon when my pred went below 40 things got easier for me but on 60mg a day I was struggling.

julietoo profile image

I had terrible sleep problems until I started taking low dose naltrexone. At first it made me sleep all the time, but now my sleep has normalized.

distanttree profile image

Not sleeping can have three basic reasons.


2 emotional.

3 body

Environmental..try someone's spare room and see if you sleep better.

Emotional practice some calming techniques or several.

Body have warm bath music candle camomile tea read something really dull for 10 mins.

I didn't sleep for about a year, learned to make tea and house work in the dark and the skills I learned have been useful.

Remember that people do manage without much sleep...just move slower and calmer.

As they say in dads army..don't panic......

Savagevixen profile image

My sleep been bad for years. A sleep study said i have some called alpha eeg anomaly 🤔( i think). Ni one seems to even know what it is. ( Surprising 🙄 when it took 12 years for my NBD diagnosis. It cause my brain to wake up in stage 3 relm and start over. it happens before i reaches the 4th stage of relm. The main one for rejuvenating the body. i have insomnia a couple times a week ( example- it 4 am and im posting instead of sleeping).

I have taken almost every sleep aid available, they have tried anti-depressiants, but i get immune in a week.

The only thing that has never lets me down is a muscle relaxer called Xanaflex ( tizanadine). Its for spams from spinal cord damage. Been on them for over 10 years and 2 mg i usually sleep for 8 hrs, 4 mg on stubborn night, but without fail i will be out in 30 mins.

Warning you better be able to get all your sleep out or tou could have the similar issues that Ambien and Lunesta cause if you try to get up to early.

Sending tou peaceful happy thoughts to ease you into a good refeshing night of sleep.

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