I’m a TN veteran of almost 5 years. Just came out of my “99% remission” after 3 years. The pain is brutal on right side V3. In 2012-2013 I suffered over 20,000 type-1 stabs in left side V1, plus a whole lot of type-2 burning. Been zombie-drug free since 2013. Unlike my 2012-2013 stabs and burns, the duration of these attacks have averaged about 15 minutes. Had to go to hospital to get shot up because I was screaming in pain. Ugh. Anybody out there just to talk?
Hi…Sorry to hear of your pain…I had MVD in Dec. of 2012 and had almost 3 years of 90% pain free. I actually picked up and moved to Midland, Texas because the weather was supposed to help…NOT…Having a bad time now. Getting harder by the day to hold down my job. I am a teacher and talking is a huge trigger. The week-ends are so nice because I try to stay quite. Praying for you.
5 years of progressively worse TN, right side, all three areas. Had MVD sept 8 and initially it was great but now i am progressively having issues. The pain isn’t the same but similar so my doc says it’s not really back. So intense sometimes and just before surgery my pain was near constant but spiked at times. I can’t go back to that. I don’t know what to do other than try to take more drugs without going back on cymbalta which wasn’t working in the end and was only making me sleep. During this past year my marriage of almost 30 years fell apart because my husband couldn’t really understand it any more. So
Just before surgery we split and are now divorced. The coming back is heartbreaking. I know how you feel. I don’t have answers other than MVD does help a lot of people. I hope my setback is just temporary healing.
This may sound new age to you but I have found this to work for me. I take Topomax 200 mg twice a day that is the maximum dose (not the new age part) or at least I used too. I got 2 “daith” style piercings in my right ear. The first was a true daith, but random piercing. It seemed to help a lot. I didn’t have a migraine for 6 months and the GPN glossopharyngeal neuralgia episodes decreased tremendously. When an episode arose, I would tug on my bar (piercing) and it would go away in seconds. That was in November 2 years ago. Later that summer I got a second piercing, hoping to improve matters because the migraines were returning and GPN increasing. This daith piercing was higher up and this tattoo artist poked around to find the greatest relief point possible. Since then I have gone from daily Excedrin for migraines to monthly and twice a day Topomax for GPN to once a day! Only on really rainy days do I need twice a day dosage. I also see an acupuncturist about every other month. She helps tremendously as well. I see her more frequently if needed. I hope this can help you. I figure 35 for a piercing was worth a try and it wasn’t permanent like a tattoo lbvs. My acupuncture charged 65 for the first visit and 35 every one after, my doctor was 100 every visit for acupuncture, so I started seeing her at the massage place instead. She was a former chiropractor and due to an injury switched professions, both licensed the same.
It’s interesting to hear all of the stories of this dreadful condition and how we try to cope with it so that we can live a life that resembles our old life. Now that I’ve been on Trileptal again for the past 10 days, after 3 years of no meds, all of the side effects are coming back that just makes me depressed as I deal with the painful attacks. I’m finding that my new V3 rightside attacks are longer and more painful than my old V1 leftside attacks. I’ll be getting my 8th MRI on Tuesday to see what’s up on the rightside. My previous trip to Mayo in 2012, including the latest MRI technology, did not locate an area of damage. No MVD was recommended because of that. Months later I went into “99% remission”…until 10 days ago on the other side. One day at a time I guess. Thanks to all for just being there to listen and share. It’s easy to feel alone.
Sorry to hear about coming out of remission. Something to consider; if you go in and out of remission, it may not be vascular compression related. My wife had MVD, but it did not offer a permanent solution. Since then we’ve been on a journey to figure out, if not compression, then what? It’s been a long journey requiring a lot of patience and persistence. She is back in remission now (recently). Here’s what we’ve explored (hard to know if one of these, a combination of them, or something else entirely are what put her back in remission):
- Many viruses and bacterias settle in the nervous system. We have long suspected it might be a virus in her nerve that is causing the damage induced pain. One of the first things she does when coming out of remission is get tested for viruses and bacterias, and follows procedures to get those eliminated. As her virus/bacteria counts come down, so too does her pain.
- Stress also has an enormous impact (another potential correlation to virsuses/bacterias, as stress weakenss the immune system). When she senses she is coming out of remission, she immediately begins to simplify her life where possible, and where not possible, she has learned to not let something increase her stress levels.
- If she puts something in her mouth and feels a pain flare up begin, she doesn’t eat it. During difficult periods this means she can go days eating nothing but very plain, bland food, but it avoids a great deal of unnecessary pain.
- Almost two months ago she did two weeks of scrambler therapy. Expensive? yep. Work for everyone? unfortunately no. For her though it was very, very helpful. If she starts coming out of remission again, it’s one of the first things we’ll do again.
- Lastly, faith is an enormous help for us. Prayer has given us an inexplicable sense of peace and cormfort during our darkest, most fearful hours, when it seemed that hope made no sense. It’s given us the courage and persistence to keep going, looking for solutions when what we hear from the medical community wasn’t making sense or isn’t working.
Not sure if any of this will help, but thought I’d pass it on just in case.
Well, I have another MRI tomorrow morning. I’m not sure if I really want them to find the compression or not. Then they’ll probably suggest an MVD. And I’ve heard so many horror stories about bad results that it scares me a little bit. But we’ll take it one day at a time and see what makes sense. I think my wife might be getting tired of watching her 62 year old husband lying on the floor screaming and crying in pain. But she’s the best wife I could possibly have, so I am incredibly lucky. As with the last horrible time (2012-2013), I’m precisely documenting my attacks in a daily journal and modifying the timing of when I take my Oxcarbazapine…within the instructed daily total instructed by my Mpls and Mayo neurologists. Seems to be showing some results, especially today! Again, I am so thankful that there are others out there who understand the challenges of this condition.
Hi Brad. Do you have bilateral Trigeminal Neuralgia?
I have bilateral TN The right side has been operated upon, since than no pain. But the left side pain in V2 & V3 is very well controlled by Tegretol & Gabapentin. I have long period of remission in between during last 40 years. You should too get remission after 2to3 months. This is a very strange illness it goes away on its own but sure to return after varying period of complete relief.
Has your doctor tried to put u on Tegretol in combination with gabapentin?
Hi Yakub. Yes, I have bilateral TN. I didn’t until 2 weeks ago. As you’ve probably read above, my left forehead V1 attacks have been 99% gone since 2013 after going through a year and a half of being a pain-ridden zombie. I had researched everything I could at that time and recommended to my neurologists, including my Mayo Clinic neurologist, that I wanted to be on a combination of Gabapentin (for type-2 pain) and Oxcarbazepine (for type-1 pain), after trying their drug-combos and dose levels. Oxcarbazepine has less side effects than Tegretol for most people. My suggested med-combo worked much better than the neurologist’s recommended med-combos that we experimented with. My attacks gradually stopped and I’ve remained med-free and mostly pain free on the left side for over 3 years.
Then 2 weeks ago, my right side pains came out of nowhere, starting first with a few stabs in the V1 branch, then a couple in the V2 branch, then a lot of horrendous, and very long, attacks in my V3. Unlike my previous left side attacks, which lasted generally a couple of seconds to a minute, my new right side V3 attacks were 3 to 35 minutes of constant excruciating pain with even more excruciatingly painful stabs at the same time. It is amazing how much pain TN can force on the human body, isn’t it?
At my first of two ER visits because I couldn’t stop screaming in pain, I had the ER doctor call my Mayo neurologist and they were able to work together. After a little experimenting on their parts, I’m on Oxcarbazepine, Amitriptiline and just completed a course of Prednisone (not sure why they did that and was too out of it at the time to ask.) As of the past 5 days, I have had no random excruciating attacks that make me fall to the floor and scream. Sometimes my V3 goes crazy on its own, but what is unique this time is that I also have a trigger with my V3. I never had triggers with my left trigeminal nerve V1 pain. If I take a couple of swigs of ice water or a hot liquid, within 2-seconds I will be screaming in agony for 3-35 minutes as my V3 goes crazy. As soon as I recognized this trigger, I had my dentist do x-rays and check things out. He found nothing wrong, which is what I expected would be the case. So, 2-weeks into this right-side V3 crap, I continue to stay away from anything too hot or too cold, hope I can get it to stop with the meds and go into another “99% remission” on my right side and get back to my normal life.
I know I was long-winded on the reply, by I hope others learn tips and techniques from each other, in addition to just supporting each other. I should mention that once again I am keeping meticulous records of my attacks, time-of-day, duration etc. and using that to adjust when I take my meds and doses during the day. My neurologists are cool with that since its worked before. And it appears to be working again. Happy Holidays! Please continue to provide feedback and suggestions.
I should mention that all 9 passes of my MRI tests that I recently had showed nothing. I wasn’t too surprised with that either since all of my previous MRI’s and CT scans from 2012-2013, including super thin-slice MRI at Mayo Clinic, never showed anything either. And of course all of the multitude of blood tests showed nothing either. So I’m a perfectly healthy person, who is in the best physical shape of my life, who occasionally just falls to the floor and screams and cries in agony.
Hello Brad thanks for replying. I hope & pray to God that you get remission soon. As I said my right side was operated in 1965 & that side is completely Numb. But I wouldn’t go for surgery of any kind on left side as that would make my entire face Numb. Prior to surgery in 1965 all my MRI reports showed normal. It is only now with advance in MRI machines they are able to track if there is any pressure along the Vth Nerve. I think MVD wasn’t practised than. The great Dr Jannette introduced this surgery which can give 80% success, & long term relief. But most unfortunately the pain returns after varying period of relief. We are unlucky to have this bilateral. I feel that you should get spontaneous relief soon. Just avoid going out on a cold windy day. Have soft food, soup etc. to keep the nerves calm. This illness is so rare that no sufficient amount is spent by Government on research.
Best of luck and wish you a very happy pain-free New Year.
Happy New Year Yakub! I wish you well in 2017.
Waw, I feel very bad for you wih this awfull pain .
I’m "happy " to read so much about it since i’m not only new to this web site but also kind of new to the TN . For me it started in january 2015 with a trigger point in my left eyebrow which gave heavy pain . I got the diagnosis of TN and after an MRI- also the diagnosis of MS . The neurologist talked about TN being progressive and chronic and I didn’t ask a lot of questions and even fogot that I heard about the TN .
Up to last november when the TN came back - full force . It also made me scream and cry with pain and by the third week ( while on Lyrica , that didn’t help at all - 600 mg/day ) I couldn’t eat,speak, swallow … . I felt desperate . I got an urgent appointment at the neurologist . She put me on Tegetrol . 100 mg to start and up to 500 mg now . For me this was like a miracle medication . It took the awfull pain away in just acouple of hours .
But now I keep searching and searching for answers as : what to expect in the future and do I have to expect that there will come a time for that the tegetrol doesn’t help anymore .
I feel so bad for you since I totally can imagine what you must feel and I thank you for your " report " because I like to know what the future " might " hold for me .
Wishing you all the best
Here I hear again : avoid the cold wind .
When I asked my neurologist about this her answer was something like : well , we don’ know the reason . That would make things much easier !
I asked often : is cold wind a problem when one is in a period of these awfull attacks
in the way that it can trigger the pain
or is it the cold wind might start such an awfull period even when everything seems to be under control ?
I’m new " here " but also kind of new to the whole TN crap .
Thank you for answering . All possible tips are welcome and wishing you all the best .
Hi Omieke. Thanks for the messages. I’m happy to report that I am in “pain remission” for about 10 days now. I call it “pain remission” because I consider “true remission” to be no pain and no mediations. I am still on the Oxcarbazepine/Trileptal and Amitriptyline, which I have been taking since December 9th, so it has not been very long at all with this new pain on the right side. In 2012 and 2013, when my left side V1 branch was the culprit, it took a year on the drugs before I went into “pain remission”, weaned myself off of all medications and found myself in “true remission”.
Regarding my new right side V3 branch pain that started December 5th, if my “pain remission” continues for another month, I plan on weaning myself off of the medications to see if I am actually in “true remission”. Hopefully that will be the case.
I have so many side effects with these zombie drugs, as I call them. My side effects with Trileptal include: drowsiness, tired feeling, fatigue, mental slowness, trouble concentrating, blurred vision and some minor balance problems. About an hour after taking a dose, sometimes the email list on my smartphone will be strolling…when I know that it really isn’t. For the short period of time when that happens, I obviously avoid any driving my car.
So, needless to say, I need to get off of these medications to be able to return to my normal life activities. With any luck, I will find myself in “99% remission” on the right side, for now. I have learned in my case that TN never goes completely away and is always lurking. That I why I refer to myself being in “99% remission” on my left side. Occasionally it will just randomly stab me in the head!
Happy New Year.
Omieke, I hope that your pain gets under control, stays under control and you can remain medication-free. I wish that for everyone with this dreaded condition. Good luck! Be strong!
I am in agony with ear pain and face pain. The neurologist told me that I have TN and Geniculate Neuralgia. The Geniculate Neuralgia is the worst. It feels like someone is using a hand drill and boring into my brain through my ear.
Wind is a MASSIVE factor for me. I wear ear muffs all the time when I go out. Even if I walk round inside a store or the school I work at. The kids are great but the teachers laugh at me when I’m walking round in ear muffs when it’s nice weather.
I went back to work after Christmas and was reported for falling asleep. So much for having a supportive colleague. I have been on the sick ever since. I go back to see the doctor on Thursday and want to be on the sick for longer. It is almost as if the straw has broken the camels back now and the thought of returning to work fills me with dread.
I am on amytriptyline and Gabapentin tablets. I also take co codamols although they will probably just dampen my feeling in lots of pain down by making me not care as much.
I’ve had this horrible condition since I was 14. It took 37 years to be diagnosed. I don’t know what to say to the doctor in order for her to give me another sick note as I couldn’t bear trying to work like this, especially now I know that I will be being watched all the time.
The colleague told me by text that I need to get to the doctors to get SORTED. And I shouldn’t go back to work until I am SORTED. Yet another person who thinks that it will just go away and then I will be fine.
I had a chest infection before Christmas and started with a horrid cold and sinus bug just after Christmas so when I went back for the one day after the Christmas holidays. I have read that my tablets side effects are cold and flu symptoms. Marvellous.
Any advice would be very gratefully received. Thanks so much, Liz xxxxxxxx.
Hi Liz. I’m sorry to hear about your awful pain and the length of time that you have been experiences this before being diagnosed. First of all, I am not a doctor. However, I have been dealing with TN off-and-on for 5 years and know how horrible it is. I’m a little confused. As far as I know, Geniculate Neuralgia is associated with the 7th cranial nerve and TN is definitely associated with the 5th cranial nerve. Is your neurologist saying that he or she can see damage in both nerves from an MRI that you have had? Can they actually see two different nerves are damaged? Have they talked about an MVD surgery or just staying on the meds and see what happens? I am on Amitriptyline and Trileptal. I have been on Gabapentin in the past too. I find that Trileptal is much more effective with the type-1 icepick stabs of TN than Gabapentin was. I have never heard of cold and flu side effects from these meds.
So sorry this is so late. It’s months later and I am worse not better.
The neurologist told me that I had TN and GN after his examination and the timeline I typed up to give him.
I had MRIs - they did my neck instead of my head - had dye injected and everything. All for nothing.
After that I had a basic MRI that showed nothing.
I go to the pain clinic now - have been discharged by the neuros as they say there is nothing they can do.
I’m still off work and have been to the occupational health service twice. The nurse I saw 2 days ago has recommended me to apply for early retirement.
She did mention remission - but I haven’t had that since I was a teenager and I’m now 55 - I think they will use that to give me less money in my pension.
Thankfully I have a brilliant husband who is an advanced paramedic - he goes with me to these appointments.
I will have to see my GP in the next few days as the pain is really bad. I’m on gabapentin and Co codamol now - I had awful side effects from the amytriptyline so I stopped those myself.
I didn’t want to retire from work - I’d been there 18 years - I know that I will be heartbroken when I go to collect my things for the last time.
This truly is a bloody awful disease and I wouldn’t wish it on anyone.
Just the pension board people who will decide how much money I will get - but I would only want them to have it for one day, just to see what it’s like for me.
I hope you are OK and do experience remission - that is hopefully permanent. I just know that I won’t have remission now, it’s been worse and worse every day for the past 15 years now.
Take care of yourself xxx