It all started with an intense ear pain which I was sure was an ear infection while training for a half marathon. Almost 9 months on the left side (ear,sinus jaw, teeth) all have constant pain (except for sleep). It is a boring pressure feeling, up until the last neurologist appt I was sure they were missing something until I came here and it's like a light came on and I'm not alone. I am about to be put on Carbamazepine and am currently taking noritriptyline but am scared of the effects (have tried anti inflams, amitriptyline, gabapentin); I have 3 children youngest nearly 2 and I HAVE to be alert otherwise im risking their lives too just by being their primary caregiver. I would love to start running again but never have the strength , energy or awareness to put myself in the position of possible harm. Has anyone with ATN had any relief from alternative therapies like acupuncture or diets?
I am a Reiki Teacher/Practitioner. I have had TN for eight years and don't think I would ever have been able to cope with the pain and side effects of meds if it wasn't for my Reiki practice. I have had two MVDs (1st did nothing, 2nd lasted a few months), I am now awaiting Gamma Knife treatment.
Can I recommend taking it easy. I don't think running is going to be on the cards for you at the moment. Your energy levels are bound to be lower now.
Try a reiki treatment and see if this helps you. Meditation is good too. There is a low saturated fat diet but it didn't seem to help me. We are all different on here so different things help.
Try lyrica (pregabalin) it is much better for side effect than carbamazepine and amitryptyline
Hi Emily, it's been 4 months since I had a rhizotomy, and I worry constantly that the pain will come back - I get some episodes of pain, but nothing like I had before.
I just heard of some procedure that really piqued my interest and wonder if anyone else knows more -- this was all second-hand information, so it's a bit sketchy. I was told someone with TN had a surgical procedure through the back of the head and the trigeminal nerve was "released" (whatever that means) - I don't know if that means the nerve was cut or what, and I'm going to try to find out if I can talk to the person who had the surgery.
I did have a Reiki treatment one time about 8 months ago, but did not realize any benefits - maybe it takes regular treatments.
Right now I am off all meds and I'm amazed at the difference in how I feel! In the meantime, I try taking it one day at a time.
Good luck, Emily
Eating cold foods can trigger the pain.I try to eat them at room temperature.
My pain presented very similar to yours! Going on 5 years ago now… I’m well controlled with Gambapentin & Baclofen; I take between 1500 and 2400 depending on how I’m feeling, most recently 1500 has been fine. Is it possible you weren’t taking enough Gambapentin to make a difference?
A couple things that also help me - I learned these from other TN sufferers - I avoid Aspertame (most diet pop), MSG & toothpaste with whiteners…
Tongue half in cheek, just half...having said that....
--Get neurologist to write scripts for all alternative gambits in order to write off as deductions.
--Choose a neurologist open to and curious about TN type 2...I'm still looking.
--Make a list of possible causes to rule out...like TMJ, sinus infection, etc....but don't be suckered too far down
the very many rabbit holes
--Be willing to travel to find such a neurologist...that's what I will have to do.
--Put aside about 25k in cash
--Try acupuncture...10 sessions with as many as three practitioners
--Stay away from sugar and all grains; reduce dairy; be prepared to notice limited changes until you binge on one and then see that there might be something to diet. Takes about three months of whatever diet for a change to emerge.
--Be prepared to accept something like Lyrica as a core medication. I am med sensitive. Glad that I discovered 25mg dosage as a way to acclimate up to 250mg.
--Consider that three months of tricylics could actually resolve the issue. Could be worth the price of admission.
--Do what ever it takes to discipline yourself to do meditation 2x daily...classes, individual instruction, biofeedback devices etc.
--Get lots of sleep..up to 11 hrs.
--Reduce stress in relationships. Either all accept you as a benign dictator in your domicile or learn to engage in joyful submission.
--Be prepared to go on sabbatical...i.e., a one year hold on role as primary care provider.
--Allocate time to a daily hobby that totally immerses you. Fishing, golf, kayaking, archery would be my own favorites except for severe joint issues so then there's daily walks with my incredible doggie off leash, air gun competition, and a friendly book club. Sex should not be overlooked, as well. Unfortunately, my pain is oral.
It sounds like geniculate neuralgia. I've been living with it since 2007 and have found that it takes concerted multidisciplinary approach for me to live with it. Mine is considered inoperable because I have it in both ears although it's primarily in the right.
I see a chiropractor that is highly proficient in cranial sacral work. I've found that during the worst flare ups the temporal bone is jammed which keeps all of the cranials from moving freely and causes more head pain.
I also have acupuncture treatments every 10-14 days with someone who is highly trained in facial/cranial work. Not just any acupuncturist will do. After trying many different ones I found that someone experienced in treating migraines and head trauma as well as a total systemic approach works best for me. DO NOT ALLOW ELECTRO TREATMENTS. This leads to hemifacial spasm and synkenisis. Electro gave me the best pain relief results for several years but now I'm living with hemifacial spasm and synkenisis which is almost as bad as the ear pain and goes hand in hand with the flare ups.
I used gabapentin for years before trying cymbalta but I couldn't tolerate the side effects. I'm now on Lyrica which I find helps more than anything else I've tried.
I also use opiates for the worst pain. Relieving severe pain allows the jaw and neck to relax which allows tension in and around the ear to dissipate.
My primary and several neurologists have treated my ear pain for years but I wasn't diagnosed with GN until a year ago when a pain specialist referred me to the third ENT specialist I'd seen since the horrible pain began. He immediately diagnosed it. Finally I had a diagnosis that totally fit.
I don't think anyone who suffers from TN, GN, migraines or any other neurological pain has found that any one thing has provided totally satisfactory relief so you have to find the treatment(s) that give you the best possible relief even if you have to learn coping skills from trained specialists to live the fullest life possible.
Good luck to you.
I am scheduled for this procedure on April 2nd. Technically it is called a Left Retro-Mastoid Craniotomy for Trigeminal Neurgalgia. They will go in and sever the nerve at it's root and hopefully I will be pain free after the procedure. We have chosen this procedure because there is no obvious blood vessels pinching the nerve on my MRI, so a MVD most likely would not help. I hope this answers some of your questions.
Paula said:
Hi Emily, it's been 4 months since I had a rhizotomy, and I worry constantly that the pain will come back - I get some episodes of pain, but nothing like I had before.
I just heard of some procedure that really piqued my interest and wonder if anyone else knows more -- this was all second-hand information, so it's a bit sketchy. I was told someone with TN had a surgical procedure through the back of the head and the trigeminal nerve was "released" (whatever that means) - I don't know if that means the nerve was cut or what, and I'm going to try to find out if I can talk to the person who had the surgery.
I did have a Reiki treatment one time about 8 months ago, but did not realize any benefits - maybe it takes regular treatments.
Right now I am off all meds and I'm amazed at the difference in how I feel! In the meantime, I try taking it one day at a time.
Good luck, Emily
Emily, there is a guy that promotes a diet of low saturated fats for people with trigeminal neuralgia. He swears by that diet. I tried it for a while. For me, it didn't seem to help much, if any. But, the diet is quite demanding and restrictive as you are limited to no more than 10mg of saturated diet/day. It can be done if you take notice of every single thing you eat. There are testimonies of people who used it and claim they became pain free. I do not recall. If you want to contact him go to franksherwood.com. Last time I looked he furnished the info at no charge.
Emily I’ve had TN for nearly 15 yrs. my girls were small when I was finally diagnosed correctly. I agree with most of the posts. You have to get a neurologist who specializes in TN. Over the past 15 yrs I’ve had 3 neuros. A good neuro will work with you to find the rt mix. For years I was on Neurotin, Lamital and Topamax. If you are not troubled with migraines stay away from Topamax. It makes you stupid. I’ve tried acupuncture, chiropractics, cold and hot fusion, topical ointments and none of it worked. You have to relieve some stress and rest when you feel down. It’s a horrible disease. I finally have the MVD procedure in Dec. and now am on Lyrica. Hope you find relief but most important is a great doc
"You have to relieve some stress and rest when you feel down". You are RIGHT about that. Stress is a killer. I often felt that stress...especially family stress....triggers it. I often wondered if it wasn't the cause. But there's probably no scientific proof of that. Click on the Members + Mods, Member Map from the home page. It will show you the location of the members here. The huge majority are in the more heavily developed countries, US, UK, AUS,GERMANY, NZ
Ginger Janis-
please be sure you read all the info you can (including on this site) prior to your procedure. severing the nerve is a last resort, & may be your only option. I don’t want to discourage you from something your docs recommend, but be sure they discuss with you possible side effects post-op, such as anesthesia dolorosa. this is a debilitating condition & you need to be aware that it is a possibility. just FYI…
m
Ginger Janis said:
I am scheduled for this procedure on April 2nd. Technically it is called a Left Retro-Mastoid Craniotomy for Trigeminal Neurgalgia. They will go in and sever the nerve at it’s root and hopefully I will be pain free after the procedure. We have chosen this procedure because there is no obvious blood vessels pinching the nerve on my MRI, so a MVD most likely would not help. I hope this answers some of your questions.
I was on Tegretol (Carbamazepine) when first had TN. It worked but I fell into low sodium, vomiting and fell, hitting my head on bricks. No other med worked, so a doc put me on a low dose of Carbamazeine and gave me a STANDING ORDER for sodium blood test. It's working, some 95%, and if I get off-balance, dizzy, I can pop over to hospital out-pt and get a sodium level blood test. I would never take this med without my standing order to back me up. Good luck!
Yes..please follow the advise of mrl because severing the nerve may actually make you worse. Read, read, read! And not just online. Go to a medical library (they have them anywhere there is a hospital or university with a medical school) and ask for help to find research articles about the procedure and outcomes....especially outcomes. I had one neurosurgeon try his best to convince me to have Gamma knife before I tried a repeat MVD...but all my research indicated that it would be better to try the repeat MVD first and then if that failed, the Gamma knife would be the next best option. Turned out this guy had NEVER done a repeat MVD and since I was a medical professional, I can see why he wouldn't want me to be his first one. There's a superstitious joke that if your patient is in the field...if anything can go wrong, it will. Just FYI: retromastoid craniotomy refers to the surgical approach to the trigeminal nerve. I had the same thing written on my chart for each of my MVDs.
Emily Just wondering if you have actually had a diagnosis yet. I have a condition called Hemicrania Continua (a type of headache) with very similar symptoms to ATN. Your symptoms are very like mine. I take Lyrica and I also have botox. almost pain free now after 8 years agony. Maybe you should ask to see a headache specialist. Incidentally the anti flam that works for HC is Indomethacin, maybe worth a try. I find acupuncture is being quite helpful too. I used to run marathons too. Unfortunately, the worst thing for this condition is exercise. Probably a good idea to take a break for a while
Have you tried a heavy dose of antibiotics like Amoxicillin? It may be the residual affects of the infection.
After almost 20 years of pain development , and many visits to the pain clinics and neurologists , it was another member of LivingwithTN who suggested that my symptoms fitted with a diagnosis of Hemicrania Continua .When I managed to get an appointment with the neurologist in Liverpool's Walton Centre , without telling of my own conclusions , but just giving all the many symptoms I have (previously I hadn't connected a lot of the my symptoms with my neuralgia) , the specialist confirmed that my problem is HC . However, it turned out that the medication Indometacin , which would confirm that I had HC by it's effect of relieving and treating the condition , proved a '' no go '' ... unfortunately it is contraindicative to my long-standing stomach ulcer , so my GP would not give it to me . So , it's a matter of sticking with the Pregabalin ( Lyrica ) , Nortriptyline and Matrifen patches until something magical comes along ... the continuing pain takes all my efforts of stress relief .... meditation etc .I have just read that Melatonin has helped some people with severe head pains , so it's of to the GP again ... you can only get Melatonin on prescription in the UK ... but , of course , there is always the Internet .
Regards , Graham .
Thank you all for your replies. I have just stopped taking Indomethacin (the neuro said I had to take a months worth to rule out hemicrania) - unfortunately no relief and I couldn't stop falling asleep so that's why carb is the next step, and the final diagnosis obviously will possibly follow with the successful trial of carb? I never did have an ear infection 1 trip to the a&e and 3 gp's all said there was nothing wrong with my ears so antibiotics have also been tried but didn't provide any relief, Although I still think maybe they might have missed something it took several months for symptoms to start in jaw and teeth but due to my initial GP suggesting possible TN I had researched and realised that there is nothing wrong with teeth, thankfully.Thanks Dorsey for the advice re; sodium and Not again about the surgery options, I have been referred to a neuro surgeon to discuss options if any but it seems MVD is definitely the preferred option. Thankfully I don't have the sharp iceprick like pain of TN1 just the constant on going boring pain of ATN ( with little relief for approx. 9 months) so although at times I think I can't handle it anymore I am beginning to accept that this isn't going away, sleeping away the pain is no quality of life and just not an option when I am responsible for 3 little people, that's why I am trying to find some sort of resource for more natural options, also I Love to be fit and exercise and this condition has totally blown that out of the water so I was wondering if there is anyone that manages to lead some sort of quality life and any tips to help me? (if that makes any sense)?
Hi Steph
Do you take Indometacin as well as having the Botox ?