Wish I would have tried this 12 years ago

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I was diagnosed with Trigeminal Neuralgia 12 years ago at age 42. Typical story, started at dentist, before eventually finding my way to neurosurgeon. Diagnosed and started taking Carbamazepine. Carbamazepine effective eliminating pain for the next 10 years. Also had periods of remission. Eventually, Carbamazepine no longer effective. Eventually tripling dosage and added Baclofen. Due to side effects, stopped Baclofen and added Gabapentin. Tripled dosage of Gabapentin. Still have side effects and unable to completely control pain with medication, so began exploring other options. I am postponing gamma knife, microvascular decompression, and other injections and compression procedures that each come with their own risks. Discovering that upper cervical technique and acupuncture have helped others, I started search for doctors and licensed professionals with TN experience in my area. While going through upper cervical treatments, I discovered something I wish I had known years ago. If I turn my head to the left and position it a certain way the pain goes away. I'm not sure if this is a result of the treatment or just me turning and stretching my neck more as a result of the treatment, but I am now able to stop the pain when the triggers occur. This is not a permanent fix, but relieves the fear I had of having the pain triggered and not having any control over it. In my case, the neck must be turned nearly 75 degrees to the left, so it is not practical to go around life with my neck turned this way. I do eat this way, since eating is a trigger nearly every time. Not sure exactly why this stops the pain. I continue my upper cervical treatments and will soon begin acupuncture. I also continue to take medications and remain in contact with my neurosurgeon. I am interested to know if anyone else with TN tried this technique of simply turning the head to stop or prevent TN pain. I wish I would have tried it 12 years ago for some relief.

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  • Posted

    I tried the same thing a few years back and sometimes it worked. I had TNG for about 20 years until I had balloon procedure about 3 years ago. It has been perfect ever since with no effects whatsoever although initially there was some numbness. Previous to that I took Tegretol, about 6 tablets per day. The pain was unbelievable but it seems a distant memory now. Probably the reason your neck twisting sometimes works is that it slightly moves the trigeminal nerve away from the other nerve. That's just my theory. Most specialists, tried about 5 different ones, are useless and just suggest you keep on with the medication. The specialist who carried out my procedure is in Australia. I wouldn't bother with acupuncture and all those alternative methods. Tried them all including a special device including a special device costing me $800, bought from Israel, and sat for hours with this thing clamped to my scull. Still have it if you're interested. Look up balloon procedure on the internet and make your own decision. I can only say it worked for me and two others who had it done previously.

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    • Posted

      Geoffrey,

      I am so happy the balloon compression procedure has worked for you and you are now pain free! Hearing stories like yours gives us all hope. I appreciate you sharing your experience about the different specialists you tried before the successful balloon procedure. It helps us all to hear them. I'll take note and be leery of an $800 device from Israel that clamps to your head. Your theory on my head turning makes sense. When I'm turning my head, I'm picturing the nerve moving away from something just enough to not allow the pain to be triggered. Currently, it is working 99% of the time. Balloon compression is definitely on my list. I'm postponing any procedure or surgery that could cause facial numbness as I am a musician and worried it would impair my ability to play the saxophone. Of course, since the medicine stopped working, I've been unable to play, but I'm hoping this is only short term. Again, thank you for sharing.

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  • Posted

    very interesting STEVE!

    is your TN on the left hand side or does stretching muscles/nerves on the right give you benefit for pain on that side?

    cheers

    Big D

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    • Posted

      Thank you for your reply Big D. My pain is on the right side. It is a shock-like pain. When it is triggered it radiates up from my upper jar to my eye and towards the top of my head. As a result, my eye will sometimes tear and my head will feel a little numb afterwards, like it fell asleep. (I say fell asleep because I compare the feeling you have when your leg falls asleep from sitting in an awkward position). Most of the time the pain only lasts for a second or two, but it can be triggered frequently. On a few occasions the pain would not stop and would last for a couple of minutes. To answer your question, the pain is on my right side and turning my head to the left (which I guess would be stretching the muscles/nerves on the right side) stops the pain from happening.

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  • Posted

    Hi Steve

    interesting you say this as i have been doing the same thing as you for years. If i speak with people i always try and sit to their right so as my head turns left, if i turn right then the pain always comes on. As ive said on this forum before ive been off all meds for nearly a year as found the side effects too hideous. The other thing i do is to puff my right cheek out really firmly until the pain goes, which it does. I also throw my head upside down too, when no ones around and pain strikes.

    If it works for you then keep doing it! I guess we all try different things to help get rid of pain. I hate this condition.

    Good luck!

    Paula xx

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    • Posted

      Hi Paula,

      Thank you for your reply and for sharing. I'm happy you found these techniques to somewhat control your pain and I'm so glad you shared. You better believe I will start puffing my cheek and flipping my head upside down now to see what effects they have on my pain. One of the worst things about this condition (especially TN1) is worrying when the pain will happen. It becomes frightening not knowing when the pain will strike and not having control over it. Sure we avoid the known trigger points, but it still triggers for no particular reason at times, just because you talk or smile and sometimes do nothing. Having these techniques,although unusual as they may seem, look to be a life saver. Over the past 12 years I've done my share of reading and research about TN and not once did I discover these techniques. Like I said in the title of my post, I wish I would have known this 12 years ago. It's not a permanent fix, but gives some control back to us. Not one doctor ever mentioned trying it and I've been to several now. Not one medical website mentioned it. It appears it's up to us to spread the word. Thanks again Paula and good luck to you!

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    • Posted

      Hi Paula

      this is my first time exploring this sight and im finding all the comments very helpful. i was diagnosed about 2years ago though i have been mindful of the 'attacks' for at least 3/4 years. What a horrible condition eh! It made me smile to read that you puff your cheek out because that is excatly what i do and i find it works. My pain is concentrated in one area if my jaw....horrific to hear that some people are experiencing the pain in ear, eye, jaw, head! Although i have been to see a dentist regarding the pain and have been told that the tooth in the pain area is 'sound' i think i will be insisting on further dental investigations as my pain is directed at one 'tooth'. Will keep on reading this forum in the hope of finding some miracle that will help.

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    • Posted

      hello!

      Gosh the things we do to try and find relief from this hideous condition! I too have pain in my jaw (lower) and i hate it there more than my top jaw. Stops me from eating and talking.

      Im guessing youve seen a neurologist re your pain? I started off with the dentist (two crowns on perfectly healthy teeth as the pain was only in the tooth - then the pain and electric shocks spread) and eventually saw a neurologist who diagnosed TN.

      Ive had TN for 18 years and have avoided surgery of any kind as in my opinion its better the devil you know. Although saying that many people have had fab results with different kinds of procedures. Theyre braver than me

      I posted on here a few weeks ago about a biomag machine, which ive purchased so will have a try and let you all know how i got on. Nothing to lose apart from money!

      Good luck with managing your pain! You have my empathy!

      Paula xx

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    • Posted

      WOW 18 years...how have you coped! yes..i saw a neurologist earlier this year, have had an MRI which shows no visible cause, am currently using Tegretol which - at the moment- seems to be working for me, although its not without its side effects ☹

      Have never heard of the biomag machine but i will be looking in to that!

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    • Posted

      No idea how ive coped. Have tried all epilespy meds but came off everything and just ride the pain out. I am sick of it but i plod on! Fingers crossed this machine helps when it arrives.

      Hope youve had a good day!

      paula xx

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    • Posted

      Hi, I have said many times in these pages to keep away from alternative "cures" because from experience of 20 years they don't work. That biomag machine will just be a waste of money. I have something similar at home cost me $800. Trigeminal Neuralgia is what it is; the trigeminal nerve at fault. The only answer in my opinion is TEGRETOL or an operation like balloon procedure. you will be wasting time and money with all these other fake cures. I know because I have been there. Any way keep trying until you find a good neurologist. Most of them just have the diplomas and the like but are reticent in doing anything concrete. They will advise you to keep taking the meds or put you in touch with some 'nerve' specialist who will try to calm you and offer words of comfort that will not solve your problem.

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    • Posted

      Thanks for that Geoffrey..sounds like you also have been through the mill. Different things work for different folks is always my opinion. have you ever been told that certain foods may be a trigger?

      I have read advice from my local health service that citrus fruits, bananas and cafeine could be triggers.

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    • Posted

      Morning Paula

      good luck with the machine....i truly hope it works for you 😃 and wait to hear all about it.

      Have you ever been told that certain foods may be a trigger....citrus fruits, bananas & caffeine

      Also as a matter of interest can i ask are you or have you ever been a ' cheek chewer'? Strange question i know but i have chewed the inside of my mouth for as long as i can remember and i wonder if it's just coincidence that it is the same side as my TN!!!! Sometimes i could be quite brutal with the chewing and drew blood on several occasions, i have even used my hand to push and hold the cheek against my teeth and i often wonder if this is how i have caused damage to the Trigeminal nerve 😦

      Hope you have a good day

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    • Posted

      morning! Ha ha, no cant say i have ever been a cheek chewer! Not deliberately anyway. I doubt you chewing your cheek has caused your TN but you never know.

      Yes i have read up on foods being triggers etc but i can honestly say i havent found anything that triggers mine. Mine launches as and when it pleases which isnt helpful!

      I get why people are wary of all types of machines but i have researched this particular one and it was developed by NASA and it is used by clinics in Harley Street, it has had good results with TN patients but i have an open mind and will see for myself. If it works or even takes the edge off i will be thrilled but if not then my partner will use it for his back pain.

      On another note this site was revamped a while ago and no longer does predictive txt etc and is massively annoying. Is it me not changing some set up thing??? aargh!!

      Fingers crossed for a better day

      paula xx

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    • Posted

      I agree, when it comes to natural treatment, I think different things work on different ppl. I've posted this on another thread, but thought I'd repeat this here as well...

      I've been suffering from TN for 10 years. The pain hasn't been strong enough for me to consider meds or surgery... until recently. I tried acupuncture and it seems to have helped. The pain did not go away completely, but is not as bad now and the episodes do not last as long. During the acupuncture treatment, the doc gave me some Chinese herbs that he said would help reduce inflammation. I hope it stays this way. I've also noticed that taking 5mg of B12 and getting at least 8 hours of sleep helps me keep TN in remission. I have a pretty stressful job and if I end up staying late, I know that pain will follow in a couple of days. It then take several weeks to subside if I follow my routine. Regarding B12, several years ago I discovered that I had B12 deficiency. I don't know for how long I had that. I thought it might have contributed to my TN. This was the reason I started taking B12, and it seems to work. Unfortunately, these natural approaches, if they work at all, take really long time to work. In my case, I think it took 9 months before I started noticing results, and if the pain is unbearable, would not be an option. Still hope this helps someone.

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