It works like this for me too. Also, the less sleep I have, the quicker or more likely the pain comes on. I didn't know it worked like this for so many.
Yes, it does happen to me. Thank-God for that time when I wake up normalb but as the day wears on so does the pain! you are not alone....
I experience the same thing. I wake up in the morning and have about two hours where I am totally pain free. Then slowly it creeps up on me and gets worse as the day goes on. The worst pain is between 4 and 6 PM.
Stop, drop and rest is the best advice I ever received. I too am almost always pain free first thing in thr a.m. Since I’ve stopped working there are many times that I avoid brushing my teeth and combing my hair for as long as I can to avoid setting off those first pains of the day. I am finding that I need much more sleep than I use to.
Yes, I too have pain in the surgical site. Wine does relax me and helps with this pain. That being said, like many others here I need to sleep in the afternoon. It is not a maybe take a nap, I have even fallen asleep in mid-sentence with my husband, so a nap is a need. I take medication three times a day, Tegretol and Lyrica. I feel stabbing pain if I "forget" to take any of my doses within an hour or two, the pain returns. I pretty much can feel what I call "pre-stabbing" feeling all day long. I do a lot of breathing exercises and just pretty much stay busy to forget the pain, but I have to have that afternoon nap.
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 have the opposite. When I get out of bed in the morning the pain starts. Once I've been moving around about 30 minutes it seems to calm down. I have also notice bending over will cause a 'flare up'. I have read blood pressure will effect the TN nerve. Does anyone else have the same symptom?
I am praying me TN is not TN 2. I have dealing with for 9 yrs and was off of medicine for 7 of them. The past 4 years I had to start back to meds, Lamitcal was my friend up until the past year. My Neurologist referred me onto a Pain Management Dr. After a nerve block, 2 radiofrequencies, and adding additional meds has not helped.
I am now off to see a Neurologist Surgeon. First MRI Monday. I am looking forward to the MRI and hoping for closure. This may sound strange, but I hope they do find a compression against the TN nerve. About everything I have read, this surgery has the highest success rate IF you have TN 1.
morning to everyone ...
my brother si suffering from dis disease around six years ..
but with the grace of laimighty ALLAH he is relve fdfrom dis disease now he is live happy healthy life ...
and i really pray for all of u dat u all wil get well so0n ..
i know how much painful it is .. :(
but now today v r happy becoz my brother has no more pain .. :)
I have ATN pain pretty well full time, and sometimes I go to sleep with it and wake with it. If I wake during the night ( always ) it is there. I try to go back to sleep, and if I wake earlyish say 6am, I take oxycontin ( slow release ) and go back to sleep . That way I wake feeling a bit better about life.
Yeh, I find i'm ok when I wake up and mostly I don't have attacks when I am asleep, although I sometimes do. But I don't think it's anything more complicated than there being fewer triggers at night. During the day you talk, laugh, smile, eat, drink, clean your teeth, go out in the breeze and whatever other triggers you have.
I have had the same experience. I also noticed that when I am angry or stressed it brings on the pain. My theory is that our blood pressure is lower when we are asleep. When we get up or are under stress our BP goes up and causes our blood vessels to expand a little. The one touching the nerve irritates it and causes the pain.
Sally, this is very interesting information. I know after I had my gallbladder removed 8 yrs ago, I am increasingly intolerant of preservatives, sulfites, etc. It is definitely something to look into as diet does appear to worsen pain.
Sally said:
Some nonsteroidal anti-inflammatory drugs and migraine medication are sulfa drugs - i.e. they contain sulphites as do many other drugs. I don't know much about the drug side of it because no-one would ever prescribe anything - my docs wouldn't accept it was a treatable problem. There are lots of bits about sulphites out there - this one has a page which details the delay in sulphite reaction: http://www.learningtarget.com/nosulfites/book.htm - now, the chap who writes it didn't appear to suffer half as much as I did - I would have had surgery or anything without question if someone would have offered it (and I went through childbirth not needing pain relief, so I am not without some resilience to pain). Morning pain for me was wine or sausages the day before. Lunchtime pain could have been something as simple as a fruited bun for breakfast. Ongoing two, three or four day pain would have been a bit of muesli or dried apricot. Sleep was the only thing that knocked the pain on the head. Waking up, sitting up and having it 'come on' was almost daily. I can't stress strongly enough how cutting sulphites has changed my life. I live in daily fear of the pain coming on, but if I steer clear of sulphites it just stays away. PLEASE, PLEASE, some of you try it - it is far less radical then surgery, medication and running your life around the pain and it might just work
I generally wake pain free as well and then it starts up within a few seconds, minutes, or even an hour later, depending on the day. I have found that if I apply heat soon after I get up, that seems to calm things down, or at the very least, slows the progression a bit.
I was also told by my specialist that freedom from pain at night was usual. before I had gamma knife I had the occasional times when I woke up with really bad pain episodes. The pain stopped totally for about 22 months after the GK but has gradually come back and is getting worse all the time. I am going to try cutting out of sulphates and see if that helps. Sometimes I read everyone's experiences and think I'm not too badly off.
Brenda in NZ
For me, I definitely can identify. Wake up almost pain free and go to bed in despair! Urggghhhh!
Yes I was just thinking today the pattern of my day is pain as the day progresses. When I’m asleep pain can wake me also now I wake a certain amount of night with twitching spasms in my face. Yucky stuff. X
When I was younger, I would feel fine for an hour or two, then feel the pain (TN2) settles over me like a shroud. Now it is there. somewhat, when I wake up, but with meds, the a.m. is still the best part of my day. (If I miss my meds, and I still sometimes forget, I have about a half hour to make up for my mistake; otherwise it is an awful day, no matter what I do.) As the day goes on, it intensifies. A noon dose and/or a late afternoon nap and/or a dinner dose helps some. Aerobic exercise helps most, but the pain does flood back full throttle, as if my nervous system took offense and decided to strike back. Still, I have more of a positive outlook than if I do not exercise. I now have heart disease so I am exercising more - 3 times a week (should be 4) - because I have to. The pain dampening effect is quite a bonus, despite what comes later in the day. I am lucky to be retired and plan my day around my needs. The pain (and the meds) did crimp my ability to work. My wife now works to fill the hole I left in our finances. She doesn't quite get the pain I'm in, and there are arguments -- but I could not live without her support.
I, too, wake up without pain and the first thing I do is take my meds, but I can't open my mouth without pain. I've had TN since 1985 and had a MVD in 2010 that did not stop my TN pain. The theory is that a MVD is less effective if the nerve has been damaged over many years. I have found a way to stop the pain and live a normal life without meds, but it takes discipline.
If I eat organic foods, and I'm very careful to avoid sugars, dried fruits and any food with a high glycemic index, I'll go months without pain. My neurologist suggested that my TN is caused by inflammation because I became pain free when I was put on Prednisone to stop a rash caused by a food allergy. There are many websites that explain sugar is linked to inflammation (http://cnn.it/1n99O8T). The nice thing is that my diet of organic foods with lots of antioxidants, like red/green/yellow peppers, gets rid of the pain, and it's healthy for me, too. I also limit the amount of red meats I eat because of the saturated fats (http://bit.ly/1inXJX3).
I never seem to learn, as I get over-confident and start eating sweet foods that I make myself believe are safe, e.g., only alcohol sugars, only organic foods that are sweet, etc.. There is a tipping point as the inflammation builds up. I get away with eating the sweet foods for a few weeks, then the pain returns for a few months until the inflammation goes away. I take Trileptal + Dilantin to dull the TN pain (as well as my thinking), and Aleve to fight the inflammation. After a few months I don't need the TN meds and I simply take an Aleve in the AM and PM for another month or two, until the symptoms go away.
I'm reassured as I read more and more TN sufferers relate stories of how their diets affect their TN pain. I'm currently in a period of pain and swear I won't "fall off the wagon" again.
An aside from TN: I'm a novelist and noted that "thehoward" writes so well that I can easily imagine the whole picture, the strength of it and the truth of it. Dorsey Price Salerno
thehoward said:
When I was younger, I would feel fine for an hour or two, then feel the pain (TN2) settles over me like a shroud. Now it is there. somewhat, when I wake up, but with meds, the a.m. is still the best part of my day. (If I miss my meds, and I still sometimes forget, I have about a half hour to make up for my mistake; otherwise it is an awful day, no matter what I do.) As the day goes on, it intensifies. A noon dose and/or a late afternoon nap and/or a dinner dose helps some. Aerobic exercise helps most, but the pain does flood back full throttle, as if my nervous system took offense and decided to strike back. Still, I have more of a positive outlook than if I do not exercise. I now have heart disease so I am exercising more - 3 times a week (should be 4) - because I have to. The pain dampening effect is quite a bonus, despite what comes later in the day. I am lucky to be retired and plan my day around my needs. The pain (and the meds) did crimp my ability to work. My wife now works to fill the hole I left in our finances. She doesn't quite get the pain I'm in, and there are arguments -- but I could not live without her support.
Everyday I relish in those few waking minutes that I don't feel pain, Than as soon as I start drinking my cup of coffee it starts to kick in. And buy the time I'm taking my son to school it's almost full blown. I find it so odd that most pain from other things is felt at night but with this it's the only time some of us get relief. My thoughts are with you and I wish you pain free days not just pain free nights.
jiggywitit45 said:
Everyday I relish in those few waking minutes that I don't feel pain, Than as soon as I start drinking my cup of coffee it starts to kick in. And buy the time I'm taking my son to school it's almost full blown. I find it so odd that most pain from other things is felt at night but with this it's the only time some of us get relief. My thoughts are with you and I wish you pain free days not just pain free nights.
Jiggiwiti 45:
I used to love my coffee. However, when I realized that caffeine is a stimulant to the nervous system I eliminated it, as well as chocolate. Lots of will power is needed, but it can be done. The only sugar foods I eat are some fruits. Hope this helps.
Jaclin