I am currently on 600 mg of lyrica (allergic to tegratol) and 50 mg of amitriptyline by night. Now I found the amitriptyline great for the first two nights cos they knocked me out. However, I am just back from an out of hours doctor, it’s 1.44 am where I am, can’t withstand the pain that breaking through and I’m getting it nearly every evening and through out the night. Is there anh thing else I could try, does using regular painkillers like tramadol with these anti seizure tablets work? . Back to my own GP tomorrow. 
I never had any luck with Tramadol. Lyrica and Effexor help keep my pain at bay. The Lyrica stopped working for me after a while. I got very sick on Tegratol, so now I'm on Dilantin. Not too sure about it,really. Still get stabbing pain. Maybe they should up the dosage of your Amitrityline? I wonder why our pain gets worse at night??
Suzi why don’t you ask your doctor about clonazepam at night?It can be very helpful with night time pain.
How long have you been taking these meds? I am not sure how long Lyrica takes to work but Amitriptyline really takes two to three weeks to really kick in. You need to give them a fair shot before giving up. I know how hard it is to do that while you are in pain but you won't really know if you don't.
I was on Amitriptyline for a year. It sure is amazing for sleep (I still miss it sometimes for that) but for the pain it takes quite a bit longer to work. Also, depending on your dose it may need to be increased. I first saw improvement at 25mgs but there were times I was up to 60mgs.
I’m only in amitriptyline since Monday to be fair. And my GP did tell me it would take two weeks before I saw an affect for the pain. He obviously doesn’t realise how impatient I am, especially when lacking sleep and in pain. I suppose I just want a miracle drug that will work within seconds. I’ll keep dreaming. I was started in 25 mg, was suppose to take that for a week then up to 50 mg along with the lyrica. Now I took two tramadol not long after posting this discussion and fell into a fitful, nightmare full sleep. But none the less, sleep. The pain was still there but they just knocked me. It’s not a habit I want to get into but at least I know if I am badly stuck and haven’t slept in nights that it might work again.
I really feel my pain is worse by night evening and night cos I’m not up right. For some reason if I’m thrown down in the couch or in bed, throbbing starts. Followed quickly by pain. Now of course I get it at other times but it seems to be from 6 in that it’s at its worst. I don’t know why really. Maybe I need to readjust the way I take my meds. It’s all trial and error and I’m lacking the patience to figure it out.
A stressed Suzi!!
You need to get to a neurologists. I found that GPs are just guessing with this disease. My neurologist claims that Trileptal is the best they have, 88% success rate--also called oxcarbazepine, I started at 300 mg (3 weeks ago) but just increased to 450. Really eliminated the sharp attacked but I still get an ear throb now and again. Trileptal is close to Tergetol (carbamazepine) but fewer side effects so I don't know if you also be allergic to it.
I know for me opoids or NSAID did not help at all when I was having 50 to 100 attacks a day.
Good luck!!
Tom
My next appointment for my neurologist is booked, I received a letter a couple of weeks ago for my follow up. It’s in may of next year. I’ll have to keep writing to his secretary and annoy her till she ,one replies, or two, bumps me up the list a bit.
Kind regards
Suzi
Suzi the pain is worse by the time evening comes because you are stressed and tired from a day of well just getting through the day so naturally your body will react and whoosh in comes the pain.
Hi again Suzi,
I know it is impossible to be patient when in so much pain. TN is horrendous. I remember very well those first, endless days of pain with NO help and NO relief. You do need to give the meds a good couple of weeks. If you are tolerating the amitriptyline well maybe you can ask to increase sooner?
If you need to take pain medication in the mean time then do it because I will tell you that stress, anxiety and lack of sleep make this worse. Sometimes being "knocked out" for a bit to catch some sleep is enough to break the pain cycle a wee, wee bit.
Being pain free in the morning and have the pain come on and get worse and worse through the day is a very common cycle with us TNers. A lot of us follow that same schedule. Late afternoon and early evening are always my most painful times.
Interesting that you say when you lay down the pain is worse. There are two things that come to mind with this. First of all when I am at rest I have nothing else to focus on except for the pain. BUT I have noticed the exact same thing with my latest flare up. It really makes me think that there is something structural at play...which I have been hot on the trail with this year. I had to have physio for a neck problem and it ended up helping my facial pain too. I am learning a lot about the cervical spine and cervicogenic TN. There is an article highlighted under the TN Basics tab at the top of the page titled the Cervicogenic Model. Cervical Therapy and NUCCA are two things to research and there have been multiple conversations on this page about chiropractors, NUCCA, Osteopaths and Physical Therapy.
Jane
suzi said:
I'm only in amitriptyline since Monday to be fair. And my GP did tell me it would take two weeks before I saw an affect for the pain. He obviously doesn't realise how impatient I am, especially when lacking sleep and in pain. I suppose I just want a miracle drug that will work within seconds. I'll keep dreaming. I was started in 25 mg, was suppose to take that for a week then up to 50 mg along with the lyrica. Now I took two tramadol not long after posting this discussion and fell into a fitful, nightmare full sleep. But none the less, sleep. The pain was still there but they just knocked me. It's not a habit I want to get into but at least I know if I am badly stuck and haven't slept in nights that it might work again.
I really feel my pain is worse by night evening and night cos I'm not up right. For some reason if I'm thrown down in the couch or in bed, throbbing starts. Followed quickly by pain. Now of course I get it at other times but it seems to be from 6 in that it's at its worst. I don't know why really. Maybe I need to readjust the way I take my meds. It's all trial and error and I'm lacking the patience to figure it out.
A stressed Suzi!!
justjane37 said:
Hi again Suzi,
I know it is impossible to be patient when in so much pain. TN is horrendous. I remember very well those first, endless days of pain with NO help and NO relief. You do need to give the meds a good couple of weeks. If you are tolerating the amitriptyline well maybe you can ask to increase sooner?
If you need to take pain medication in the mean time then do it because I will tell you that stress, anxiety and lack of sleep make this worse. Sometimes being "knocked out" for a bit to catch some sleep is enough to break the pain cycle a wee, wee bit.
Being pain free in the morning and have the pain come on and get worse and worse through the day is a very common cycle with us TNers. A lot of us follow that same schedule. Late afternoon and early evening are always my most painful times.
Interesting that you say when you lay down the pain is worse. There are two things that come to mind with this. First of all when I am at rest I have nothing else to focus on except for the pain. BUT I have noticed the exact same thing with my latest flare up. It really makes me think that there is something structural at play...which I have been hot on the trail with this year. I had to have physio for a neck problem and it ended up helping my facial pain too. I am learning a lot about the cervical spine and cervicogenic TN. There is an article highlighted under the TN Basics tab at the top of the page titled the Cervicogenic Model. Cervical Therapy and NUCCA are two things to research and there have been multiple conversations on this page about chiropractors, NUCCA, Osteopaths and Physical Therapy.
Jane
suzi said:I'm only in amitriptyline since Monday to be fair. And my GP did tell me it would take two weeks before I saw an affect for the pain. He obviously doesn't realise how impatient I am, especially when lacking sleep and in pain. I suppose I just want a miracle drug that will work within seconds. I'll keep dreaming. I was started in 25 mg, was suppose to take that for a week then up to 50 mg along with the lyrica. Now I took two tramadol not long after posting this discussion and fell into a fitful, nightmare full sleep. But none the less, sleep. The pain was still there but they just knocked me. It's not a habit I want to get into but at least I know if I am badly stuck and haven't slept in nights that it might work again.
I really feel my pain is worse by night evening and night cos I'm not up right. For some reason if I'm thrown down in the couch or in bed, throbbing starts. Followed quickly by pain. Now of course I get it at other times but it seems to be from 6 in that it's at its worst. I don't know why really. Maybe I need to readjust the way I take my meds. It's all trial and error and I'm lacking the patience to figure it out.
A stressed Suzi!!
I'm not sure if this posted. When I have really bad days I cannot lay down to sleep so trying sitting up. I am curious about structural causes. My thought is since the pain is allegedly caused by a blood vessel impinging on a nerve, perhaps this is aggravated when you lay down and more blood rushes to your head.
Also, has anybody tried marijuana to relive the pain? In some states it is approved for medical purposes
Hang in there Suzi
Tom
Weed is illegal here in Ireland. Not to say that I couldn’t walk 2 minutes down the road and get it. A relative of mine uses it, by eating it in a stew once a week for chronic arthritis, they swear it’s the best thing they ever tried to relieve pain. It has crossed my mind to be honest.I couldn’t see it working only that you would be more relaxed. I’m gonna stick out these meds for another week and see how I go. It’s just annoying to be pumping them in and getting little affect.
I had an mri done that showed nothing out of the ordinary. Nothing swollen, nothing pressing against the nerve, no nerves been damaged. However while I was at the hospital they noticed something in my anti bodies. I have an auto immune of some sort, further tests to be done to figure out just what. The neurologist suggested it could be the cause of TN. My mother has sjorgens ( not sure I’m spelling that right) , and TN is a symptom of that. She doesn’t have TN tho thank god.
I just don’t understand what it is about laying down that makes it worse. I may b just over thinking it. I have tried reading but I can’t concentrate on it enough to stick to it when I’m in this level of pain.
Has anyone tried a tens machine to try elevate pain?
Thanks for yer input
Suzi
From what I have heard do not try the tens machine. I am pretty sure it is not recommended for facial pain and I do believe there have been some very bad experiences there.
Neurological problems run in my family and I do believe they are all connected. TN actually runs in my family which is very rare--I am the fourth woman with it. We also have migraines in several family members (which is also a disorder of the trigeminal nerve and many with TN have them too) and my mom has MS.
The only thing more frustrating about this pain is how little is known about it. Knowledge is power and we need to be our own best advocates for sure.
suzi said:
Weed is illegal here in Ireland. Not to say that I couldn't walk 2 minutes down the road and get it. A relative of mine uses it, by eating it in a stew once a week for chronic arthritis, they swear it's the best thing they ever tried to relieve pain. It has crossed my mind to be honest.I couldn't see it working only that you would be more relaxed. I'm gonna stick out these meds for another week and see how I go. It's just annoying to be pumping them in and getting little affect.
I had an mri done that showed nothing out of the ordinary. Nothing swollen, nothing pressing against the nerve, no nerves been damaged. However while I was at the hospital they noticed something in my anti bodies. I have an auto immune of some sort, further tests to be done to figure out just what. The neurologist suggested it could be the cause of TN. My mother has sjorgens ( not sure I'm spelling that right) , and TN is a symptom of that. She doesn't have TN tho thank god.
I just don't understand what it is about laying down that makes it worse. I may b just over thinking it. I have tried reading but I can't concentrate on it enough to stick to it when I'm in this level of pain.
Has anyone tried a tens machine to try elevate pain?
Thanks for yer input
Suzi
Hi Suzi,I have tried a Tens machine and also an acupuncture energy pen.They didn’t work for me but may for you,give them a go! I have heard of miracle stories from just two drops a day of marijuana and if it was legal here I would try it.The pain upon lying down could be that you are stressed and tired from the day so the pain hones in or you have programmed your mind ,unintentionally,to expect pain when you lie down so you get pain,or you are not destracted when you lie down so of course you concentrate on pain,could be the way you lie…a lot of things! I think Suzi in a week or two the med may kick in and your pain will decrease.Let us hope so!
I remember Elavil being the first med I was put on back in 2000. I also remember sleeping and sleeping ALL night, which is now just a vague memory. What I remember most about Elavil is that it did indeed lower my pain levels for a few months, but it made me gain over 50+ lbs! Have you or anyone else had that happen on it? Once I quit taking it due to it no longer working, the weight slid right off. Now don’t get me wrong, if there was a med that helped my pain and never wore off but made me gain weight, I’d be a walking pain-free humpty-dumpty! But unfortunately, it did wear off and my pain was right back to increased levels. Just curious if the weight gain was me or the Elavil. I know everyone reacts differently.
Thanks in advance. Keep “facing” and fighting this pain like the pain warriors we are!
justjane37 said:
How long have you been taking these meds? I am not sure how long Lyrica takes to work but Amitriptyline really takes two to three weeks to really kick in. You need to give them a fair shot before giving up. I know how hard it is to do that while you are in pain but you won’t really know if you don’t.
I was on Amitriptyline for a year. It sure is amazing for sleep (I still miss it sometimes for that) but for the pain it takes quite a bit longer to work. Also, depending on your dose it may need to be increased. I first saw improvement at 25mgs but there were times I was up to 60mgs.
I gained weight on Amitriptyline too. Probably 20 lbs. But I had lost at least that after ATN came on. The left side of my mouth was so sore that it was a complete chore to even open my mouth.
I switched to Nortriptyline which does have less side effects and I lost probably 10 lbs. I have been off all meds for a few weeks and weight is still coming off. It is this bloated, puffiness that these meds seem to cause. But, like you, I would trade those lbs in a second to get rid of that pain. And I will again.
What med are you on now Juliette? And is it working for you? Do you have ATN?
Juliette Suzanne said:
I remember Elavil being the first med I was put on back in 2000. I also remember sleeping and sleeping ALL night, which is now just a vague memory. What I remember most about Elavil is that it did indeed lower my pain levels for a few months, but it made me gain over 50+ lbs! Have you or anyone else had that happen on it? Once I quit taking it due to it no longer working, the weight slid right off. Now don't get me wrong, if there was a med that helped my pain and never wore off but made me gain weight, I'd be a walking pain-free humpty-dumpty! But unfortunately, it did wear off and my pain was right back to increased levels. Just curious if the weight gain was me or the Elavil. I know everyone reacts differently.
Thanks in advance. Keep "facing" and fighting this pain like the pain warriors we are!
justjane37 said:How long have you been taking these meds? I am not sure how long Lyrica takes to work but Amitriptyline really takes two to three weeks to really kick in. You need to give them a fair shot before giving up. I know how hard it is to do that while you are in pain but you won't really know if you don't.
I was on Amitriptyline for a year. It sure is amazing for sleep (I still miss it sometimes for that) but for the pain it takes quite a bit longer to work. Also, depending on your dose it may need to be increased. I first saw improvement at 25mgs but there were times I was up to 60mgs.
I too gained weight on lyrica and nortripyline but for me that was good as I am a skinny little thing! If they had not had the awful side effects I would still be on one or other of them.Lyrica takes a good month to kick in and nortripyline can be longer .I have ATN and as yet haven’t tried tegretol.I am scared to as I am afraid of going through yet more horrible side effects…a big TLC hug to all of you out there!
HI
I FIND TRAMADOL MAKE ME SLEEEPY BUT THEY DONT CHANGE THE ATTACKS REALLY. COMBINING THEM WITH NAPROXEN/ANTI-INFLAMATORIES CAN HELP.I HOPE YOU FIND RELIEF SOON, I TAKE LYRICIA TOO COMBINED WITH DULOXETINE WHICH HELPED FOR A TIME. MY FEELING IS THEY DONT DO MUCH AT ALL ANY MORE. ALL THE BEST
HELEN X
Hi folks, thank you for all you replies and suggestions. I am on the amitriptyline a week. Woke this morning with no pain what so ever and had a fantastic pain free few hours where house hold tasks were swiftly caught up on. Starting to get the odd shock here and there now but I am very grateful for the pain free time I got!!
Having horrific weather here in Ireland at the minute for a sufferer of TN like myself. 100 km/h winds with 5 days so I am house bound. Not moving at all out of it.
I haven’t found that I have gained weight or am bloated from the tablets yet and I am lyrica 2 full months now, i do take tablets and have done for gastro problems with two years, my doctor upped them recently so maybe that is what is keeping the bloating under control.
I am going to stick this out for another couple weeks and see if this medication does its job. I hope it does seen as I am having no adverse affects from it so far.
Wishing ye a good day
Suzi
suzi said:
Hi folks, thank you for all you replies and suggestions. I am on the amitriptyline a week. Woke this morning with no pain what so ever and had a fantastic pain free few hours where house hold tasks were swiftly caught up on. Starting to get the odd shock here and there now but I am very grateful for the pain free time I got!!
Having horrific weather here in Ireland at the minute for a sufferer of TN like myself. 100 km/h winds with 5 days so I am house bound. Not moving at all out of it.
I haven't found that I have gained weight or am bloated from the tablets yet and I am lyrica 2 full months now, i do take tablets and have done for gastro problems with two years, my doctor upped them recently so maybe that is what is keeping the bloating under control.
I am going to stick this out for another couple weeks and see if this medication does its job. I hope it does seen as I am having no adverse affects from it so far.
Wishing ye a good day
Suzi