During the day I feel pain...and here and there Ill get attacks of pain.
At night however, I dont sleep a blink. Im up all night with my face burried into a pillow...crying with severe pain. I get an attack after another attack and its intense pain. Im not talking about the normal TN pain...this is electrifying x20 with continuous stabbing pains x 20. All night. Around 8 am usually it calms down a bit and Im able to sleep for an hour or two.
Saeeda I have only had one TN attack lasting 7 days, the attack became worse as the week went on. The climax was a night of continues pain,exactly like what you describe. Hardly any sleep and it stopped around 8.00am. That morning I took myself off to hospital where I was told I had TN. Leading up to that awful night i had been to the dentist to have my teeth examined and i thought maybe that had brought on such an awful night attack? Once I received medication from hospital my night pain stopped, and eased it in the day until it stopped all together. This was 6 months ago, I am now off medication and feel only aches along the nerve but no pain. Hope you soon get relief. Elaine x
Another thought, I link my first attack to clenching my teeth (not sure if i am correct) but my 7 days of attacks happened whilst on a cycling holiday and each time i got off my bike i had a short sharp attack, just lasting minutes. I think this may have been because i unclenched my teeth. I have an edge to edge bite, so my back teeth meet. (my top teeth do not overlap the bottom like most peoples do). I am now careful at night that i do not clench my teeth when going off to sleep, i try to relax my mouth and i also avoid laying on a certain part of my head/face which also feels sensitive, (temple area) in case it triggers an attack or makes me sore in the morning.
Saeeda, you asked "why" your pain worsens at night. It might be that when you are laying down, a blood vessel shifts to touch the trigeminal nerve in a way that is different from your standing positions. Have you tried sleeping in a chair, sitting up? As Elstep suggests, the first priority now is likely to be finding a medication or combination of medications that reduces the sensitivity of your nervous system enough that you don't have such severe attacks at night. Are you working with a neurologist?
Wow Red.... that is an awesome insight. My pain is blinding and happens most when I stand up. But laying down, I feel so much better... unless a huge flare has started. Hum.... interesting.
Mine is the same, I get about 4 or 5 attacks through out the day but at night it feels like its one constant attack. I don't think the pain is any worse than the pain during the day but I'm just not able to deal with it so well
OMG this explains last night so well. And also why I sleep practically hugging the headboard of my bed.
I need a neurologist, perhaps so that we can look at a night time medication to take as well as my Tegretol. Why do I a) feel oblivious for not having worked that out, and b) so excited by that prospect!
And the sensitive part of my head bit yes! I get that too! Mine is at the jaw joint area right by my ear. That hurts like whoa.
Standing, walking (not bending forward though urgh) and sitting are times when I am in he least pain. Anything else is not comfy shall we say.
Red- Im up all night sitting in a chair, or on the floor. I cant lay down even if I wanted to. I havent seen a neurologist recently because of my insurance. Thursday my insurance will go into effect and it can't come sooner. Im going on a week with no sleep and non-stop pain all night.
I went to UCSF Urgent Care today, paid out of pocket. The dr prescribed me tramadol...I'm hoping itll help with the pain. Ive tried neurontin and it didn't work for me.
When youre in this much pain, youll do anything. At night the pain gets so bad I cant even breathe, because Im getting shooting pains every second.
My entire life has been affected by my condition....but it's ok, I dont care. As long as I find a cure...Im confident that God will help us all.
I found that when I changed the way I sleep (i.e., I stopped sleeping on my "bad side" which I have done since birth) I didn't wake up with pain as often. Also, someone mentioned bike riding. . . I always had attacks on car trips--has something to do with the vibrations. Anyway, Saeeda, to Red's point--you might consider changing sleep positions. It isn't easy to get your body to change a longterm sleep habit, but it can be done and may offer a simple solution to your problem. I certainly hope so. Wishing you well . . .