Trigeminal Neuralgia Support Group

My Mom spent night after night in the recliner, she couldn't lie down either. She was taking Lyrica which seemed to help her more than anything, it sorta just knocked her out so to say. She has had relief for a few weeks now, taking tegretol and some other things for inflammation I think, she has so many, I can't keep up with them. I know how hard it is to try to sleep, I watched her night after night, it's awful. She is having radiation treatment to the nerve this week, it's a blood vessel pressing against the nerve (she has a non-malignant brain tumor that is probably causing the blood vessel to have moved against it) Every case is different and there is no one answer, but her neurologist is confident that this will help her. We are praying he is right. Best of luck to you.

All Blessings
hannah1

I am the wife of one who is experiencing sleeping issues too. He has changed his pillow and often I find him sleeping in a exercise chair he has. He says he can rest here. I am not sure but he is sleeping when I see him. I have just been letting him "find" his resting place and not whine that he is not in our bed. Life has not been the same since he found out he had TN in July. I just am helping he all that I can.

Thank you two for taking the time to write. Shercomto, your husband and I are in the same boat. Diagnosed around May, I am sitting up straight on the couch to sleep. I would LOVE to lay down and stretch my legs but no chance of that. I counted the hours I slept in October and It was 41.5 hours. Hope the couch will serve me better this month. Tell your hubby I know how he feels, he's not alone in his struggles! DD

1. When it is really bad, do not attempt to lie down.
2. Think more of propping yourself up.

One good way to do this is get on the couch so that the non-painful side of your face can rest against the back of the couch and you can have your legs up (your body is in an L-shape, with the painful side of your face free from touching anything or having any pressure on it). Use pillows and cushions to make yourself comfy and blankets etc to keep yourself warm. If warmth helps your face, use a heat pad or something similar to warm your face. If cold helps, use whatever helps you. Turn the TV on with either the sound on low or mute. Focus on the TV so that you are not focusing as much on the pain. If the pain is extremely bad, try to physically and mentally relax your muscles in your face and neck. When pain is bad, we tend to clench and tense them, which makes the pain worse. If you do not want to have a TV on, use a guided meditation CD or MP3 track on a personal CD or MP3 player.

Another good way to 'lie' in bed is using one of the V-shape pillows you can get that supports your back. Take one of those and at least 2 reasonably firm pillows. Prop yourself up.

I listen to the radio at night. Sometimes I watch TV or have it on mute - I find it comforting.

There have been months when this was the only way I could sleep. You do get snatched moments. If you are not getting enough sleep, try napping in the day when you can. A lot of the ability to sleep comes from finding a way to not focus on the pain - it is there, but you are not allowing it to consume you (which is easier said that done) and also keeping your muscles relaxed, & the rest of your body warm and comfortable.

I remember when I damaged a nerve in my neck (long before TN - but I do wonder if it is linked) and I only managed 11 minutes of sleep over the course of 2 weeks... and 9 minutes of that was all in one go.

It hurt in any position - sitting, standing, lying down. Since it was impossible to sleep, I focussed on relaxing my mind and body instead, so that at least I got some 'rest'.

Try sitting up against a bean-bag, knees up but feet on the bed/couch - this is the most restful position for your heart and circulation. Watch or listen to something you've seen/heard lots before, so your eyes/ears/brain have something to focus on, but not have to think too hard.

Lack of REM sleep will make you grouchy, and everything feels surreal. Eventually, the worst of it will pass, and you will get through it.

Kind regards to you all.

Amunah - interesting about the knees up (I must remember that!).

I remember feeling so grouchy and zombie-like for months at a time and then when I finally got on Tegretol, I just passed out! It was great... I realise that I had actually needed a sedative or sleeping pill because being knocked out really helped my overall health and feeling of normality. Unfortunately, my body quickly got used to Tegretol and I didn't get the 'knocked out' effect again... I just spent the rest of my time in a haze like a zombie but because of the medication, not the pain!

It was something I learnt for first aid (first on the scene of a heart attack). Having knees bent puts less pressure on heart and your lower back.

It may help to put pillows or a rolled towel under them (in case you actually fall asleep!).

Check out some other 'fully supported resting positions' on this site http://www.survivingsevereme.com/s...

Let us know your progress, DarlingDD x

Thanks Amunah - very helpful.

P.S. I loveeeeee my V-shaped pillow... it's a life-saver in itself.

Darling sweetheart your Dr forgot to tell you something. Long term use of oxycodone or hydrocodone can cause sleeplessness. I know that if i take hydrocodone that i am not going to sleep well if at all. The question is could that be adding to your sleeplessness. It really can effect mine. Dr's forget about that. They arent the ones in pain and dont know what it is like to just try to think logically for 5 mins. Talk with your Dr about it and see if there is something new you might be able to work with.

I also need the TV on just to listen news or maybe a movie I've already seen. My spouse thinks I'm wierd, but I tell him it is a pain destraction. And my Mom doesn't understand why I can't sleep without the drugs,one which is Ambien cr, I don't recommend that if you are still a working person, or just be careful taking it. It has caused me to do strange things at night, like eating a box of donuts with no recollecton. SCARY!! I would love to be able to sleep on the unaffected side,the same positon really makes you sore. Any hints on a pillow to take pressure off??