I agree that sleep is the best thing for this horrible condition we all have to live with daily. I find that if I don't get 9 hours of good sleep my pain is worse. I take Lyrica and Cymbalta, and I take these in the morning. I only take the night time dose when I have had a long day of doing too much. Even socializing is hard, and when my grandson comes over I have a hard time with the noise. Thank god I didn't have this when I brought up my own child. My neurologist used the Goldilocks story to describe how I should approach each day. Finding a balance of what is "just right" is the key to living with this. That being said, my husband is still always telling me to do more exercise, but this is also a trigger. I can't do any sports that require impact. The Lyrica has made me gain weight and trying to lose while on Lyrica is nearly impossible. I do drink wine and it helps when I am having the dull ache in the back of my head where I had the MVD surgery. It isn't a trigger for me, it helps to relax me. Does anyone else have pain at their surgical site? I also have a big indentation there.
I have been told not to take Ibuprofin, it isn't good when you are already taking Lyrica. Ask you neurologist about this. I have been told to take Tylenol.
Turtlebug said:
4 weeks into my diagnosis-wake up at night in severe pain, take more (800mg) ibuprofen, apply heat, back to sleep in an hour or so. Get up at 5am pain free and same thing-within minutes get slammed...take 3 lyrica and another 800mg of ibuprofen....settles down a bit, drink coffee and slam, settles down again, brush teeth and slam, settles down, take dog for 2 mile walk and get slammed! I am so sick of this.....am seeing my neuro on Wed. and he'd better do something to help me. Have missed 3 days of work this week....and ALMOST been to the emergency room 3X!
Yeah. For the most part. But if I move wrong at night, BAM…
So you have pain even after you had surgery???
Leah said:
I agree that sleep is the best thing for this horrible condition we all have to live with daily. I find that if I don't get 9 hours of good sleep my pain is worse. I take Lyrica and Cymbalta, and I take these in the morning. I only take the night time dose when I have had a long day of doing too much. Even socializing is hard, and when my grandson comes over I have a hard time with the noise. Thank god I didn't have this when I brought up my own child. My neurologist used the Goldilocks story to describe how I should approach each day. Finding a balance of what is "just right" is the key to living with this. That being said, my husband is still always telling me to do more exercise, but this is also a trigger. I can't do any sports that require impact. The Lyrica has made me gain weight and trying to lose while on Lyrica is nearly impossible. I do drink wine and it helps when I am having the dull ache in the back of my head where I had the MVD surgery. It isn't a trigger for me, it helps to relax me. Does anyone else have pain at their surgical site? I also have a big indentation there.
I was in a class once where they taught what happens when you wake up. My body responds the same way your does in the morning.
Your body over a few minutes wakes up in stages. Sometimes when people first wake up they even find that they cannot move arms or legs. This is because the body normally turns off those reflexes so you don’t kick your feet all over the bed while dreaming you are running. Often people in dreams as they approach waking find that in their dreams it is hard to talk. When this happens your bed partner will probably tell you how you talked in your sleep. Fortunately most of the time the TN pain processing shuts down when you are sleeping. As your body starts gearing up to get out of bed things start returning to " normal ". You can still have a zinger hit you in the middle of the night but, usually rarely.
There is at least one study that I know of that tried to address this question & it has to do with the importance of adequate sleep in the pain patient. In this study, good sleep was AS EFFECTIVE as narcotic pain meds for some people in the study. This included pain from many causes. Sleep is a healing & restorative function of our body. Think of it as the anti--inflammatory forces building up their arsenal. So the theory goes that when sleep is long enough & restorative, it actually reduces the pain-causing biochemical response in our bodies... for a while.
I have a physician friend who is a chronic pain patient & says adequate sleep is the single most effective anti-pain tool for her. For me, it is very similar. When my sleep is poor or not long enough, my pain comes on earlier & is worse.Hope this helps a little.
Unfortunately yes. The MVD surgery helped with the typical TN symtoms, the CONSTANT electrical shock I would experience all the time. The trigeminal nerve is right beside one of the main arteries, and every time my heart beat I would get the tingling painful shock to my face. They also removed a vein that was twisted around the nerve. So when people ask me if the surgery worked I tell them yes and no. Yes, the typical symptoms have become less, but I still have the atypical symptoms which are still very debilitating. The bone didn't heal well and I have gaps, and I also had swelling of the brain after surgery (hydrocephalitis). That happens when the ceribral fluid doesn't stop producing because there is a leak (CSV leak? I think it is called). I had that happen twice and needed two lumbar drains. The second time the needle was inserted the fluid sprayed out at the doctor. This made my brain come down hard on the skull and it caused permanent damage to the the surrounding layer, called the derma.
Socheezy said:
So you have pain even after you had surgery???
Leah said:I agree that sleep is the best thing for this horrible condition we all have to live with daily. I find that if I don't get 9 hours of good sleep my pain is worse. I take Lyrica and Cymbalta, and I take these in the morning. I only take the night time dose when I have had a long day of doing too much. Even socializing is hard, and when my grandson comes over I have a hard time with the noise. Thank god I didn't have this when I brought up my own child. My neurologist used the Goldilocks story to describe how I should approach each day. Finding a balance of what is "just right" is the key to living with this. That being said, my husband is still always telling me to do more exercise, but this is also a trigger. I can't do any sports that require impact. The Lyrica has made me gain weight and trying to lose while on Lyrica is nearly impossible. I do drink wine and it helps when I am having the dull ache in the back of my head where I had the MVD surgery. It isn't a trigger for me, it helps to relax me. Does anyone else have pain at their surgical site? I also have a big indentation there.
Unfortunately yes. The MVD surgery helped with the typical TN symtoms, the CONSTANT electrical shock I would experience all the time. The trigeminal nerve is right beside one of the main arteries, and every time my heart beat I would get the tingling painful shock to my face. They also removed a vein that was twisted around the nerve. So when people ask me if the surgery worked I tell them yes and no. Yes, the typical symptoms have become less, but I still have the atypical symptoms which are still very debilitating. The bone didn't heal well and I have gaps, and I also had swelling of the brain after surgery (hydrocephalitis). That happens when the ceribral fluid doesn't stop producing because there is a leak (CSV leak? I think it is called). I had that happen twice and needed two lumbar drains. The second time the needle was inserted the fluid sprayed out at the doctor. This made my brain come down hard on the skull and it caused permanent damage to the the surrounding layer, called the derma.
Socheezy said:
So you have pain even after you had surgery???
Leah said:I agree that sleep is the best thing for this horrible condition we all have to live with daily. I find that if I don't get 9 hours of good sleep my pain is worse. I take Lyrica and Cymbalta, and I take these in the morning. I only take the night time dose when I have had a long day of doing too much. Even socializing is hard, and when my grandson comes over I have a hard time with the noise. Thank god I didn't have this when I brought up my own child. My neurologist used the Goldilocks story to describe how I should approach each day. Finding a balance of what is "just right" is the key to living with this. That being said, my husband is still always telling me to do more exercise, but this is also a trigger. I can't do any sports that require impact. The Lyrica has made me gain weight and trying to lose while on Lyrica is nearly impossible. I do drink wine and it helps when I am having the dull ache in the back of my head where I had the MVD surgery. It isn't a trigger for me, it helps to relax me. Does anyone else have pain at their surgical site? I also have a big indentation there.
Same here until pain recurred after mvd. It did not wake me, but if I woke up at night pain kicked in immediately instead of the 1/2 hour reprieve I used to have when waking up in the morning.
Indeed this has been my first question to every doctor that I have seen (many many of them) and none of them gave any explanation except that is typical for TN. My personal "theory", from the point of view of an electrical engineer, is that during rest time the nerve recharges its levels of some neurotransmitters or electrons as I would say for a battery or a capacitor, and during the course of the day it discharges. Personally I usually feel much better in the afternoon.
My aTN is different. The pain on my nose comes on while sleeping, mostly in the early morning. I believe that somehow my sinuses (or whatever) are putting pressure on the nerve as I'm sleeping in a certain position. If I sleep elevated and leaning my head to the right (pain comes on left) I have a lot less pain and less often. When I wake up with pain I can tell my face was squashed on the left side when I look in the mirror. It happens. I recently bought one of those foam wedge cushions that keep me elevated during sleep. That's much better than the multiple pillows that gave me neck and back pain. (If you can avoid sliding down too much. :-) I've come a long way since my diagnosis in recognizing the triggers, so that I am grateful for.
I have exactly the same pattern of pain. My TN 2 pain started after I had some dental implant surgery 6 years ago. It is very confusing to wake up pain free then have it start again and gradually increase during the day. Before I started taking Tegretol I experienced almost unbearable pain in the evenings with a pressure cooker feeling and burning. My doctor told me that the mouth rests during sleep at night and the nerves calm down. As the day goes on the pain gradually increases while I am talking, chewing, etc. Stress is also a trigger for pain anytime I am awake. For me I have trouble falling to sleep at night and need a sleep aid. For several years I took Ambien but felt concerned about horror stories of people driving, doing strange things or eating huge amounts of food while under the influence of this drug. About a year ago I started taking a capsule form of medical marijuana before bedtime which relaxes me and enables me to fall asleep. With marijuana I still feel pain but it is more distant and doesn’t bother me. Like you I wake up pain free and have a small window of time before it flares up again. My heart goes out to everyone who is experiencing this debilitating and horribly painful condition.
I have it in reverse I wake up because of pain then it gets better latter on during the day. But some days it last all day.for a few days to weeks.
It's the same with me! Sleep is the only pain free time, but I am grateful for that! My sores feel like seeds under my tongue's skin, trying to burst through. Aches as well as burns. They appear as a rash on the middle to the bottom of my tongue. On bad days I also feel pressure and aches in my nose vestibule. Does this resonate with anyone out there? Thanks!
I have ATN with constant pain and the moment I open my eyes I am aware of the throbbing pain, it takes me forever to get ready for work in the morning because of it. I only do botox and cant take any anti-seizure meds, but every night I have to take baclefen, flexeril or xanax to get any sleep. But after I am up for a couple of hours the pain is much less intense. It stays like that until late afternoon, then as the day goes on it gets worse. I find the more active I am during the day, things like talking and walking and working on the computer, the worse the pain gets. I am now a very sedentary person because of this. However, I find that if my pain level is not too high to begin with then very easy workouts, like sitting in a chair and curling 5 or 8 lb weights seems to temporarily decrease the intensity of head pain, but only lasts about an hour before it ramps back up again.
Yes, I experience this as well. Some days I start to think, " Today might be into a good day" and then nope its back. Does anyone know why we dont have pain when we sleep, not that Im complaining.
i find ear plugs really help with the noise. you can still hear a bit. i have to wear them if there is more than 1 person talking and i have to wear them for most people except ones with really soft voices.
Leah said:
I agree that sleep is the best thing for this horrible condition we all have to live with daily. I find that if I don't get 9 hours of good sleep my pain is worse. I take Lyrica and Cymbalta, and I take these in the morning. I only take the night time dose when I have had a long day of doing too much. Even socializing is hard, and when my grandson comes over I have a hard time with the noise. Thank god I didn't have this when I brought up my own child. My neurologist used the Goldilocks story to describe how I should approach each day. Finding a balance of what is "just right" is the key to living with this. That being said, my husband is still always telling me to do more exercise, but this is also a trigger. I can't do any sports that require impact. The Lyrica has made me gain weight and trying to lose while on Lyrica is nearly impossible. I do drink wine and it helps when I am having the dull ache in the back of my head where I had the MVD surgery. It isn't a trigger for me, it helps to relax me. Does anyone else have pain at their surgical site? I also have a big indentation there.
This is the first time I've read about food mentioned as a trigger. I suffered, dropped to 102 lbs. due to inability to eat or drink for weeks, then had steroid infusions to stay alive until until my Gamma Knife surgery could be done. It took months before my pain was under control with Keppra. When I learned, by researching on my own, that saturated fats attack your nervous system I immediately sought out a nutritionist who helped me understand how foods work and affect your body. It has helped me to the point where I have gained back to my target of 112 Lbs. and have recently eliminated taking any meds. There are some 'no-brainer' items you can eliminate forever and never miss. I know things can change and I am cautious about so much. Let me know if you find this helpful and I will give more details. So far, so good. I have been pain free for nearly a year. Jaclin
My pain always hits after lunchtime and sometimes later. It seems sleep helps regenerate and when I am in pain sometimes laying down helps, but temporarily. Sleep is a good reset.
That's exactly how mine is at the moment, 4 hours after rising I have the numbness and the ache. During a full blown episode I hane stabbing from when I first try to move my mouth on waking. Fun times!!