To start, I have ATN/ Neuropathic like pain. I can sleep no problem. Almost every morning after a good night’s rest, The first 5 -10 minutes or so when I am waking up I have none or very little pain. Almost like the brain forgot there was pain going on, and it takes a while for it to realize I have some kind of nerve compression. If course I hit the snooze button 50 times to continue this feeling.
Wondering if anyone else experiences this, and the duration? It would be cool if I could bottle whatever chemically is going on in the brain in the morning at the very least.
I have ATN and wake up pain free as well, (but I need a sleep aid because I can’t lay my head down on the pillow without firing off cascading pain, like having a wasp nest in my head.) with my meds and if I keep relatively quiet, I can keep fairly pain free (it’s there though, hovering…) for a few hours. If I don’t speak the freedom lasts even longer. I too would like to bottle that first thing in the morning feeling! There is no doubt that sleep settles things down, the trigeminal ganglion must be sleeping too:)
I am the same way. And since I've been on meds, sometimes it lasts for up to an hour. Before I started on medication, it would only last a few minutes or until I sat up in bed. When I was researching what I could possibly have (kind of diagnosed myself to begin with since doctors had no clue) I found that in several sources withTN. I think I read the nerve stops firing when you sleep. I usually have little trouble falling asleep because I'm so tired from medication I pass out every night. I never lay on that side either. If I wake up pain free and decide to try laying on my right (the TN side) my pain will start again within a few minutes unless I can instantly go back to sleep.
The doctor I went to (she is a mainstream medical doctor) said this is a sign that the problem is not in the side of the head but in the neck. This is not the common recognized cause of TN. She said it is because at night your neck rests and the pressure is taken off of the disc that is compressing the nerve. That is why when you get up in the morning it takes a bit for your heavy head to put weight on the problem area put pressure on the nerve and start it firing again.
Please no one get upset at me this is just my opinion, and i would love to hear how you all think it works, but the whole vein around a nerve never made much sense to me from the beginning. Don't we have veins and nerves intertwined all throughout our bodies? and i read that they have done autopsies on cadavers that had a vein around a the trigeminal nerve and they didn't have symptoms. I realize it may be the problem for some. But in my case it was not.
I am going to include a couple videos that explain it pretty good.
He is aiming it toward migraines because that is what he mainly treats but it is the same. He mentions symptoms I never noticed I had, I think because the horrible jaw pain overshadowed anything else. He is the physical therapist that works with the doctor I went to. I realized that I had very tender points on the top of my shoulders and when she(the doctor) pressed on the facet joints in my neck they were very sore. I did not have the sinus symptoms. Also the test with the pillows didn't seem to work with me. My therapist had me do some head movements sitting up to evaluate me.
The man in the video is not the physical therapist that treated me. I only went to him once. He was quite a ways from my home and he said that it would be better if I could be treated closer to home because long car rides would aggravate my symptoms. I felt he was very knowledgable and had put a lot of thought and study into this. He found me some numbers for therapists in my area that do the same thing. McKenzie therapy. The therapist that treated me had never treated TN but said he would see what he could do and wasn't' going to charge me unless he could help me. I felt a BIG difference in three days. In four weeks my TN pain was gone and I was off all medications. That was November. It was just a simple exercise I did daily and my sessions with the therapist were less expensive than a massage. Massage alway made my pain worse. I know it sounds too simple. But that is the beauty of it,. If I had tried it and it didn't work I would not have spent much money or time. Anyway this is what worked for me. Of course you have to decide for yourself what makes sense and works for you. If you want more info on the doctor or therapy I would be happy to share. I try to come back here on a regular basis hoping to help.
OMG! I thought I was going mad, my GP and Dentist all think I am going mad, my wife is the only person that understands as she see what I go through each and everyday day.............I try and hide it from my Children.
I'm a new member here and until now I thought I was the only person to suffer this terrible living hell, But I just came across JoeE post here and thought OMG this is what I go through every morning.
I go to bed with the pain, I can also fall asleep as by the end of each day the pain eases (some nights I have woken up in pain which just adds to the horror and hell of it all). But every morning I wake up with NO pain, I lay there for as long as I can enjoying every single second, because I know as soon as I get out of bed and start walking around the pain starts within 10-20 minutes...............
I believe when the body is sleeping everything is resting, its like we are on standby. The nervous system and muscles etc are working at a less percentage than what they are when we are active. I've read that some sleep experts suggest that neurons used during the day repair themselves during sleep. When we experience sleep deprivation, neurons are unable to perform effectively, and the nervous system is impaired.
Thank you to you guys I don't feel so mad, maybe I am not going crazy..............
I have the same thing. I think it just the evil TN taunting me. I wake up and I’m still woozy and I have no pain and I think “I’ve been cured!!!” Only to have it come roaring back only to stick around all day. My TN increases infrequency and intensity throughout the day. I wish someone could figure out what’s going on physiologically with that morning reprieve and develop a treatment from that.
Mine was not caused by any dental work. My surgeon said it more than likely was congenital. I was born with it. It just took this long for the attacks to get so bad that I couldn’t ignore them.
What also puzzles me is when I saw the Neurologist in 2009, all he got me to do was to move my arms and legs (simple little exercises)............... he wasn't interested in my head-pain. All he told me was its stress, avoid stress and not to have anymore teeth out. He did not prescribe me any medication, just said keep taking the Amitriptyline that my GP had prescribed.
It was the Maxi-Facial Clinic referral my Dentist refereed me to that carried out the CT scan, nothing was found and all I was told was to avoid stress and not to have anymore teeth out.
Same for me, I usually don't feel much pain in the mornings rather it comes on gradually throughout the late morning / early afternoon until becoming excruciating around 5-6pm, luckily often when work has finished
You totally have to advocate for yourself and push for answers. If you don’t get satisfactory answers from one doctor, go see a different doctor. I know how hard that is when you are already completely overwhelmed by pain and anxiety already. Most of these doctors don’t really know what they are looking at anyway.
Hi JoeE,
Pretty typical of TN, no pain while you sleep that would wake you up. My pain is the same. First 10 to 15 minutes no pain then BAM! Its all,over from there until the next dY on wakening. Its crazy thats how the cycle is , for me also at least. Sorry for your pain, it certainly wears you down. Hang tough best you can. As I am typing to you can feel it coming on ,just like that.
My Best
Joanne(tatto20)
My pain runs down the side of my neck into my shoulder blades. I am going to TRY this. I don't see that it can hurt a thing... and I don't see my neurologist until june. I have always wondered a bit- if part of this was my fibro. Thank you.
Shawnamohana said:
The doctor I went to (she is a mainstream medical doctor) said this is a sign that the problem is not in the side of the head but in the neck. This is not the common recognized cause of TN. She said it is because at night your neck rests and the pressure is taken off of the disc that is compressing the nerve. That is why when you get up in the morning it takes a bit for your heavy head to put weight on the problem area put pressure on the nerve and start it firing again.
Please no one get upset at me this is just my opinion, and i would love to hear how you all think it works, but the whole vein around a nerve never made much sense to me from the beginning. Don't we have veins and nerves intertwined all throughout our bodies? and i read that they have done autopsies on cadavers that had a vein around a the trigeminal nerve and they didn't have symptoms. I realize it may be the problem for some. But in my case it was not.
I am going to include a couple videos that explain it pretty good.
He is aiming it toward migraines because that is what he mainly treats but it is the same. He mentions symptoms I never noticed I had, I think because the horrible jaw pain overshadowed anything else. He is the physical therapist that works with the doctor I went to. I realized that I had very tender points on the top of my shoulders and when she(the doctor) pressed on the facet joints in my neck they were very sore. I did not have the sinus symptoms. Also the test with the pillows didn't seem to work with me. My therapist had me do some head movements sitting up to evaluate me.
The man in the video is not the physical therapist that treated me. I only went to him once. He was quite a ways from my home and he said that it would be better if I could be treated closer to home because long car rides would aggravate my symptoms. I felt he was very knowledgable and had put a lot of thought and study into this. He found me some numbers for therapists in my area that do the same thing. McKenzie therapy. The therapist that treated me had never treated TN but said he would see what he could do and wasn't' going to charge me unless he could help me. I felt a BIG difference in three days. In four weeks my TN pain was gone and I was off all medications. That was November. It was just a simple exercise I did daily and my sessions with the therapist were less expensive than a massage. Massage alway made my pain worse. I know it sounds too simple. But that is the beauty of it,. If I had tried it and it didn't work I would not have spent much money or time. Anyway this is what worked for me. Of course you have to decide for yourself what makes sense and works for you. If you want more info on the doctor or therapy I would be happy to share. I try to come back here on a regular basis hoping to help.