When I wake up most mornings, I am pain free or very close to it. But within minutes to hours it's back and keeps on increasing as day goes on. Does this happen to others? Any doctor theories, personal theories?
Yep, same for me.
Sleep is my only true "pain free" time. I often wonder why it doesn't wake me up as it just take me a few minutes of being up and walking before the pain starts up. You have posted a good question, I look forward to hearing a good explanation
This is exactly how my pain works. I sleep perfectly (or near perfectly), but within a half hour to an hour of waking, it slams right back into me.
I think it may be because you are so still and relaxed when sleeping.During severe episodes i have had attacks while sleeping.It is horrible.
How long have you had TN? As time has passed, I have become accustomed to it. I rest often. Every day I rest for three to four hours at midday in order to feel pretty normal the rest of the day. I cannot exercise rigorously, but gentle exercise, of all sorts is fine. Enough sleep each night is a highest priority, or pain will happen guarantee for several days until the nerve settles down. I take extra gabapenten, just one and break up the times I take my meds so that either I take lower doses throughout the day, or higher doses at midday, or whatever is needed when my pain flares. As time has passed, my TN is slowly beginning to feel more like a symbiotic relationship rather than a wicked curse. But, I am older, have no responsibility of a job, or young children, or any of the things most people have to do to survive in life. All you can do is ask your loved ones to help you get rest, and to take the burdens of any type of stress off you. Cook for you, clean for you, do everything possible. You join when you feel good enough to want to. If your loved ones can do this and you can accept this you may start to feel better during the day. Oh, and Stop, Drop, and Rest when you feel pain coming on. Bump up a medication. After a week or so, you will feel better. As time goes on, it will not take so long to feel better; usually, just a day or two. Then, all you need to do is that maintenance rest during the middle of your day. It’s really helpful. Pamper yourself.
I feel I must add directly to your question posed directly about waking up after a good night’s rest and pain begins after you get up. If it were me, and it has been me in the past, I would go to my pain doc and work on getting my meds correct so they are helping with my pain. If I had pain that kept getting worse as the day wore on, I would go crazy and want to knock a few heads in. If your doctor cannot help you, change doctors. I have three medical professionals on my team. My primary physician, my neurologist, and my pain counselor who is able to prescribe medications. She works with me while conferring with the doctors. I see all three of them, but the counselor as often as needed. She has helped me straighten out the daily pain problems I was having. She’s a real godsend.
The articles I have read on ATN describe it exactly that way - little, to no pain, upon arising, and then it kicks in when a person moves or talks, etc. That was one of the features that my neurologist asked me about to help make the diagnosis. I have no theory as to why, but just seems that is the way this disease works. I am just very thankful I can sleep well, even if the day is less than stellar.
We had to time my daughters meds very carefully. All her triggers started in the morning-- chewing, brushing teeth, swallowing–so her pain flared as soon as she started her day. Making sure to properly space the evening dose and morning dose (12 hours precisely apart) was important to keep kevels steady. But the disease is progressive so as months went by that got harder and harder…
I have found that plenty of sleep and avoiding irritating people both help my TN. Note when TN creeps up or slams into you and try to avoid those situations. Once I had a massage and TN came on like gangbusters for a month. I had been pain free for a month before that. I have to avoid sugary, spicy or cold foods, all triggers. If I am going out to dinner, I take my night time med before dinner instead of before bedtime.
I wonder why each person is different, but that's why this website is so helpful. Dorsey
P.S. from Dorsey -- Would you want to take your meds upon rising? Just a thought.
I rarely have episodes in the morning ( I have geniculate neuralgia), but can expect them mid afternoon and evening.
I don't know what my triggers are. But its not becoming tired as the day goes on because I'm a regular afternoon napper. Having said that I do get them frequently when I'm sleeping. WHAM and I'm wide awake at 2 - 4 am. Doesn't make sense I take meds at night, but I could be at too low a dose. I'm only just diagnosed. For others with movement and touch triggers it makes sense that you are still and relaxed.
My med is Lamotrigine (Lamictal) the recommendation is to split the dosage between am and pm. Like I said above I get my episodes at night after taking meds so plasma levels should be at their highest.
Dorsey Salerno said:
P.S. from Dorsey -- Would you want to take your meds upon rising? Just a thought.
My medication is managing things really well right now but my pain always followed this pattern too.
Mornings were always pain free. Around 11am twitches and stabs started coming on and by about supper time I was exhausted and in pain. I never had pain in the middle of the night.
I noticed if I could take a nap (unfortunately I work and have a young daughter so naps are not frequent) then the pain would usually subside again.
I also noticed that if I came upon something stressful through my day then the pain would escalate quickly.
Re: Purple 74 Painless Morning
I have found that nerve pain is for me a direct result of how calm or nervious I am. As the day progresses I find that people or situations stress me out and my pain increases. I have tested this theory and for me it helps me direct my battle against pain. I am on my 4th year of TN.
I now try to avoid anti seizure meds. I have tried other options that I could find and have had some varying degrees of success with, Acupuncture, Lidocane, Purposeful Breathing, Exercise, Valium, and Marijuana via vaporizer. I have not yet tried Opioids. Normal pain meds do not work on nerve pain. I can even go out for dinner and have 3 glasses of wine which relaxes me enough to enjoy dinner and company.
So my obvious suggestion is relaxation whatever way you obtain it. I hope this helps. Michael in New Jersey
Michael said:
Re: Purple 74 Painless Morning
I have found that nerve pain is for me a direct result of how calm or nervious I am. As the day progresses I find that people or situations stress me out and my pain increases. I have tested this theory and for me it helps me direct my battle against pain. I am on my 4th year of TN.
I now try to avoid anti seizure meds. I have tried other options that I could find and have had some varying degrees of success with, Acupuncture, Lidocane, Purposeful Breathing, Exercise, Valium, and Marijuana via vaporizer. I have not yet tried Opioids. Normal pain meds do not work on nerve pain. I can even go out for dinner and have 3 glasses of wine which relaxes me enough to enjoy dinner and company.
So my obvious suggestion is relaxation whatever way you obtain it. I hope this helps. Michael in New Jersey
i am exactly the same. if only the whole day could be mornings.
This describes me perfectly. I find that the more stress I experience in a day the more pain I get, so I do my best to stress under control, also no caffeine, as this can really bring my pain on.
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!
Hi, I can't add anything other than to agree that this is quite common. After the night's rest it's best, then, the more pain the less restful the body - more pain.