I have a lot of fears. I read that eventually the medicines stop working, and then surgery is the next choice, and even that only lasts for awhile. I also read there are two types of Tn, TN1 and TN2. Has anyone had success with the medicines where they continued to help and surgery that kept them pain free for a long time? I can not abide this disorder, the fears and the depression and the hope that I will not have to be in pain like this forever. Any help would be appreciated. I am still so new at this having only been diagnosed a month ago and I am scared to death I will never be able to function like I use to.
I had the MVD surgery 31 years ago after battling this disease for 8 years. Over time the meds get less and less effective to the point where most of us had to max out on the meds and they have side affects. The best thing I ever did was have my MVD surgery. I woke up from surgery 31 yrs ago pain free and I have been blessed to be pain free ever since. Mind you that was a very long time ago and I am sure they are even more effective today. Its an individual decision whether to get the surgery or not but in my case I was only 33 yrs old and didn't want to live my life the way I had been for the previous 8 yrs. If you get the surgery the chances are strong you will get your life back and function just like you are used to functioning. I will never forget what I went through and am so sympathetic to those who are enduring the same pain. It certainly is life altering but you can get your life back. Good luck!!
Thank you, when it comes to that I will go that route. Thank you once again and I am so happy for you.
Makenzie Marks said:
Thank you, when it comes to that I will go that route. Thank you once again and I am so happy for you. I looked it up. I am not sure if I am a candidate for that. I had a brain MRI, no tumor and nothing pressing against the nerve. I guess I will need to consult a doctor when that day arrives.
I had surgery last Nov and do not regret it for a second. Wish I had had it even sooner! I was on 3 different type of meds (not all at once) which left me totally pain free for about 2 yrs. but they became ineffective and I maxed out on dosages. Since surgery I have been completely pain free and med free. I have classic or TN1. Yes, there are two kinds and it is possible for someone to have both and for TN1 to progress to TN2. Have you had an MRI? I didn’t read your bio- are you on meds now?
Anne said:
I had surgery last Nov and do not regret it for a second. Wish I had had it even sooner! I was on 3 different type of meds (not all at once) which left me totally pain free for about 2 yrs. but they became ineffective and I maxed out on dosages. Since surgery I have been completely pain free and med free. I have classic or TN1. Yes, there are two kinds and it is possible for someone to have both and for TN1 to progress to TN2. Have you had an MRI? I didn't read your bio- are you on meds now?Yes I had an MRI last Wednesday. No tumor, nothing pressing on the nerve.
Hi Anne,
I'm getting ready to make my appointment for MVD but I have a question for you. Did you have a titanium plate to close? Anything else like cement, stitches, glue, tape, staples? I hear different ways and since you had a good experience I think this will help me. I know some people with titanium plate get headaches and cold sensitivity. I also hear some had CSF leaks. Any info will be helpful. I am so glad you are pain free. I hope to be pain free sooner rather than later.
Anne said:
I had surgery last Nov and do not regret it for a second. Wish I had had it even sooner! I was on 3 different type of meds (not all at once) which left me totally pain free for about 2 yrs. but they became ineffective and I maxed out on dosages. Since surgery I have been completely pain free and med free. I have classic or TN1. Yes, there are two kinds and it is possible for someone to have both and for TN1 to progress to TN2. Have you had an MRI? I didn't read your bio- are you on meds now?
Anne said:
I had surgery last Nov and do not regret it for a second. Wish I had had it even sooner! I was on 3 different type of meds (not all at once) which left me totally pain free for about 2 yrs. but they became ineffective and I maxed out on dosages. Since surgery I have been completely pain free and med free. I have classic or TN1. Yes, there are two kinds and it is possible for someone to have both and for TN1 to progress to TN2. Have you had an MRI? I didn't read your bio- are you on meds now?I am on triliptical and nortripiline. MRI showed no tumor and nothing pressing on the nerve.
Hi Mackenzie
I had part of my skull put back with a small titanium plate. It was closed up with staples. I had no issues with CSF leaks and this being my second winter, I’ve had no cold sensitivity, headaches, pressure or pain on or around The incision site. I had some numbness around the back of my skull for a few months but that’s about it and it has resolved itself.
Thank you Anne for sharing your story. I am getting ready to have an MVD and I am scared to death. I pray my surgery will go as well as your's did. I am glad you are pain free.
hi Mackenzie! my heart goes out to you-this disorder caused me a lot of fear and anxiety as well. I have had this for 23 yrs now and the few treatments and drugs I was allowed were useless or harmful. a couple yrs ago I tried homeopathy and it has really helped me-I am not pain free but close-it does not consume me anymore. I take spigelia 200c strength and staphysagria [ed] for any major pain.i get it at 1-800-[ed]. Sometimes I add hypericum perf as well.sius congestion makes tn worse so I use boiron sinusalia and I take [ed] brand oil of oregano gelcaps as directed or 1/2 that to avoid flus and colds that in me cause a lot of pain.over time I notice that I am not having as much pain and the deep burning pain is rare now. there is a supplement that I am going to restart on-benfotiamine-a special synthetic b1 that works to save a diabetics eyesight and renal function and help with diabetic neuropathy-and I read that it healed a case of tn as well. please do not give up-try a few things and you may well find the relief you need.i ran out of my remedies one time and I was having these bursts of pain like tiny explosions going up and down my face for 2.1/2 hrs and I realized that I had [ed] migraine in the house and it worked instantly!i actually laughed-I did not expect that! well the next day I got to try it again with same result! this was a yr ago' I do get some zaps and zingers but less than I use to so have not tried this for them.homeopathy has really helped me and I even use it on my bunny when he gets hayfever and it works for him. I hope you can read my rather poor typing and that this info helps you-let me know if you try it! god bless you! erin
[posting edited by Red Lawhern: please be aware that we discourage advertisements of brand name products and dose rates. Members are advised to first seek the advice of their primary care providers when trying out alternative remedies over-the-counter.]
Hi jenny2
Where are you having your surgery? I had mine done in NYC. Best decision I’ve ever made. I was in such debilitating pain before my surgery that there wasn’t one bone in my body That was scared or even questioning my decision. I was beyond desperate. Thankfully my surgeon recognized that and was able to schedule it 3 days after my request. Recovery during the first 24 hrs was painful. When my nerve was lifted off of the blood vessels it had been resting on, my nerve began to misfire with the most excruciating pain. Thankfully I was provided excellent drugs! I woke up the next morning 100% pain free. Groggy but pain free. I stayed in the hospital for 3 days and then went home. Returned 2 weeks later to have sutures removed. I was so tired after surgery. It is so important to not over do it and sleep. ALOT. I think I spent 95% of the first 2-3 weeks on the couch. Ginger ale and ginger tea will become your best friends due to the nausea the meds can cause. Driving was tough the first couple times due to stiffness in my neck but that eased over time. I flew 2 months after surgery- which I was very nervous about and had no issues. I stayed out of work for 3 months- a bit longer than the average but my job is very physical, so it was recommended to me. I was on meds for 4 months after (I was on 3500mg of triliptal and 40mg baclofen- I was a zombie) meds were tapered down almost immediately. It feels so wonderful to be off all medications. I must admit- even 14 months later, I still carry a bottle of triliptal in my purse. Goes to show how distressing this disease can be.
I'm going to the University of Penn, Philadelphia. I have more questions for the doctor before I actually go through with it but I know there is no other lasting way to have my life back the way it was before all this. I bearly remember what that was like. Not being scared of eating, brushing teath, drinking, laughing, talking, walking, I couldn't believe walking until it hurt so bad at times. I tried meds but they made me sick and really didn't help the pain so I stopped taking them pretty quickly. I couldn't stand feeling so loupy. I was lucky I was in remission most of the year but when the holidays came I was in extreme, unbearable pain, as I know I don't have to describe to anyone here. I have had it for 3 years. Now I just can't take it anymore. We went to the mountains with family for Christmas for the 1st time and I really couldn't enjoy myself. Afraid that at any moment the pain will take me down. The pain is constant and talking, if I can, makes it so much worse. I can understand you keeping a bottle of triliptal with you. I have heard many of us feel that way. Once we are pain free the fear is always there that it may come back. This really takes over your life. I had to stop working from this last year so I plan to really sleep and hope recovery is as fast as they say it is. Then I hope I can get a job. But mostly I just want to eat. I lost so much weight and I'm so hungry. I want to eat without tears from the pain. You sound really upbeat and that you have your life back. That is so encouraging. As scared as I am I know I can't live like this. Like now, after a long day, I'm in so much pain, tired, hungry and weak. If the doctor wheeled me in surgery now I wouldn't say a word. I have to say that I am so glad you still are active with this group. It means a lot to be able to hear your experience. Pray that all will go well with me. Come to think about it, I don't know how I stumbled across this support group, it just came up with one of my many searches when I was feeling like I have no one to talk to or who can relate with me. Keep in touch. (I'll be stocking up on ginger ale and tea) thanks for the tip.
Hey Mackenzie- I totally understand your worries and anxiety. I was a complete mess when I was diagnosed. You read so many terrible stories online and you are in such misery...it just puts you into a panic. The good news is many many people have long remissions between attacks. One person on here went 10 years! Many people have success with meds.. and are able to go off all meds during remissions. YES--it is scary and it is a concern--but it is also very unpredictable--no two cases are alike. It is important to take the meds-- try to get the nerve to calm down-then hopefully go off the meds once things are settled for a few months. I research as much as I can so I have a plan if it gets really really bad. It may never get to that point. As the months go by and the meds continued to work I was able to stop thinking about it every few minutes-- even every day... and now have been in remission for a year and a half. I found the best thing was to just get on with life and enjoy every painfree moment. Hope you get to a good place soon!n ;-)
erin said:
hi Mackenzie! my heart goes out to you-this disorder caused me a lot of fear and anxiety as well. I have had this for 23 yrs now and the few treatments and drugs I was allowed were useless or harmful. a couple yrs ago I tried homeopathy and it has really helped me-I am not pain free but close-it does not consume me anymore. I take spigelia 200c strength and staphysagria 200c for any major pain.i get it at 1-800-homeopathy-you can get their smallest vial of 160 pellets for9.95-the dosage is 3 to 6 pellets under the tongue and let it dissolve-if I am real bad off I take more and it could take a day or so to get full or nearly full relief.but I do start to notice it helping. sometimes I add hypericum perf as well.sius congestion makes tn worse so I use boiron sinusalia and I take swanson brand oil of oregano gelcaps as directed or 1/2 that to avoid flus and colds that in me cause a lot of pain.over time I notice that I am not having as much pain and the deep burning pain is rare now. there is a supplement that I am going to restart on-benfotiamine-a special synthetic b1 that works to save a diabetics eyesight and renal function and help with diabetic neuropathy-and I read that it healed a case of tn as well. please do not give up-try a few things and you may well find the relief you need.i ran out of my remedies one time and I was having these bursts of pain like tiny explosions going up and down my face for 2.1/2 hrs and I realized that I had hylands migraine in the house and it worked instantly!i actually laughed-I did not expect that! well the next day I got to try it again with same result! this was ayr ago' I do get some zaps and zingers but less than I use to so have not tried this for them.homeopathy has really helped me and I even use it on my bunny when he gets hayfever and it works for him. I hope you can read my rather poor typing and that this info helps you-let me know if you try it! god bless you! erin erin, I know the homeopathy place well, have at the moment on hand arnica, and staphysagria, I take when the medicine starts to wear off. I found a place that treats TN here is the link in case tou are interested. They have doctors on call 24/7 and they advise what one must give up or limit when taking the supplements for TN. http://www.biogetica.com/how-to-cure-trigeminal-neuralgia-with-natural-treatment I am going to give it a try. I am a ND and have feaversihly been doing research on this disorder, learning how to spot problems and all. I appreciate your help, and bless you right back erin.
I have done some research and a basin of hot water with three TBSP S of epsom salts is recommended to bath the burning and painful area 2x a day for two minutes. I spalsh it on so I don't have to touch the area. I tried it yesterday and it helped. Also peppermint oil on the painful area was recommended. Any natural remedies I welcome.
tacocat said:
Hey Mackenzie- I totally understand your worries and anxiety. I was a complete mess when I was diagnosed. You read so many terrible stories online and you are in such misery...it just puts you into a panic. The good news is many many people have long remissions between attacks. One person on here went 10 years! Many people have success with meds.. and are able to go off all meds during remissions. YES--it is scary and it is a concern--but it is also very unpredictable--no two cases are alike. It is important to take the meds-- try to get the nerve to calm down-then hopefully go off the meds once things are settled for a few months. I research as much as I can so I have a plan if it gets really really bad. It may never get to that point. As the months go by and the meds continued to work I was able to stop thinking about it every few minutes-- even every day... and now have been in remission for a year and a half. I found the best thing was to just get on with life and enjoy every painfree moment. Hope you get to a good place soon!n ;-)
I have read so much on line my head is spinning and it scares me even more. I know this may sound like a stupid question but how do you know you are in remission and not the meds working? he meds help a bit but then when I think all is well there is a flare up day. I hate the burning, it is odd the burning and throbbing are in one tooth and the gum, sometimes it spreads to the upper gums on the same side. so I keep ice there and it helps at times. I would love to go into remission. Before the root canal and eventually the pulling of the tooth it has stopped hurting. Sometimes I walk around the house like a caged animal, or rock back and forth. You have given me hope. Thank you. Thank you all. I feel I am not alone in this.
Good luck.
Makenzie Marks said:
erin said:hi Mackenzie! my heart goes out to you-this disorder caused me a lot of fear and anxiety as well. I have had this for 23 yrs now and the few treatments and drugs I was allowed were useless or harmful. a couple yrs ago I tried homeopathy and it has really helped me-I am not pain free but close-it does not consume me anymore. I take spigelia 200c strength and staphysagria 200c for any major pain.i get it at 1-800-homeopathy-you can get their smallest vial of 160 pellets for9.95-the dosage is 3 to 6 pellets under the tongue and let it dissolve-if I am real bad off I take more and it could take a day or so to get full or nearly full relief.but I do start to notice it helping. sometimes I add hypericum perf as well.sius congestion makes tn worse so I use boiron sinusalia and I take swanson brand oil of oregano gelcaps as directed or 1/2 that to avoid flus and colds that in me cause a lot of pain.over time I notice that I am not having as much pain and the deep burning pain is rare now. there is a supplement that I am going to restart on-benfotiamine-a special synthetic b1 that works to save a diabetics eyesight and renal function and help with diabetic neuropathy-and I read that it healed a case of tn as well. please do not give up-try a few things and you may well find the relief you need.i ran out of my remedies one time and I was having these bursts of pain like tiny explosions going up and down my face for 2.1/2 hrs and I realized that I had hylands migraine in the house and it worked instantly!i actually laughed-I did not expect that! well the next day I got to try it again with same result! this was ayr ago' I do get some zaps and zingers but less than I use to so have not tried this for them.homeopathy has really helped me and I even use it on my bunny when he gets hayfever and it works for him. I hope you can read my rather poor typing and that this info helps you-let me know if you try it! god bless you! erin erin, I know the homeopathy place well, have at the moment on hand arnica, and staphysagria, I take when the medicine starts to wear off. I found a place that treats TN here is the link in case tou are interested. They have doctors on call 24/7 and they advise what one must give up or limit when taking the supplements for TN. http://www.biogetica.com/how-to-cure-trigeminal-neuralgia-with-natu... I am going to give it a try. I am a ND and have feaversihly been doing research on this disorder, learning how to spot problems and all. I appreciate your help, and bless you right back erin.
I should say these are the things the doctor told me to stay away from when I start the regimen.
Dr. Vijay Kamat - B.A.M.S (Medical Director - Ayurveda)Materials to Avoid or Limit While Using Homeopathic Remedies
• Mint in any form: mint candy, toothpaste, mouthwash, or menthol cigarettes.
• Caffeine or nicotine in any form, such as (non)carbonated beverages, coffee, chocolate, or cigarettes.
• Omit or separate by one hour from remedy use.
• Any volatile or odiferous material such as paint thinner, eucalyptus, camphor and menthol (as in muscle and joint rubs), moth ball fumes or perfumes.
• Marijuana and excess alcohol can also interfere with the action of remedies.
• Raw garlic- omit or separate by 1 hour from remedy for use. Cooked garlic is acceptable.
hi makenzie! try spigelia as well-its k.nown as the remedy for the 5th nerve.200c strength is deeper acting , also mag phos could be added also to help calm the irritated nerves. I used to frequently have the entire 1/2 of my head and face feel like it was burning and it would stay like that for 6-8 hrs-it always started in my ear-it was horrible when I had to work with it-but now I only rarely get a bit of it and it goes right away even without supplements I think.thanks so much for your info and I hope things turn around for you soon!! erin
Makenzie Marks said:
Makenzie Marks said:
erin said:hi Mackenzie! my heart goes out to you-this disorder caused me a lot of fear and anxiety as well. I have had this for 23 yrs now and the few treatments and drugs I was allowed were useless or harmful. a couple yrs ago I tried homeopathy and it has really helped me-I am not pain free but close-it does not consume me anymore. I take spigelia 200c strength and staphysagria 200c for any major pain.i get it at 1-800-homeopathy-you can get their smallest vial of 160 pellets for9.95-the dosage is 3 to 6 pellets under the tongue and let it dissolve-if I am real bad off I take more and it could take a day or so to get full or nearly full relief.but I do start to notice it helping. sometimes I add hypericum perf as well.sius congestion makes tn worse so I use boiron sinusalia and I take swanson brand oil of oregano gelcaps as directed or 1/2 that to avoid flus and colds that in me cause a lot of pain.over time I notice that I am not having as much pain and the deep burning pain is rare now. there is a supplement that I am going to restart on-benfotiamine-a special synthetic b1 that works to save a diabetics eyesight and renal function and help with diabetic neuropathy-and I read that it healed a case of tn as well. please do not give up-try a few things and you may well find the relief you need.i ran out of my remedies one time and I was having these bursts of pain like tiny explosions going up and down my face for 2.1/2 hrs and I realized that I had hylands migraine in the house and it worked instantly!i actually laughed-I did not expect that! well the next day I got to try it again with same result! this was ayr ago' I do get some zaps and zingers but less than I use to so have not tried this for them.homeopathy has really helped me and I even use it on my bunny when he gets hayfever and it works for him. I hope you can read my rather poor typing and that this info helps you-let me know if you try it! god bless you! erin erin, I know the homeopathy place well, have at the moment on hand arnica, and staphysagria, I take when the medicine starts to wear off. I found a place that treats TN here is the link in case tou are interested. They have doctors on call 24/7 and they advise what one must give up or limit when taking the supplements for TN. http://www.biogetica.com/how-to-cure-trigeminal-neuralgia-with-natu... I am going to give it a try. I am a ND and have feaversihly been doing research on this disorder, learning how to spot problems and all. I appreciate your help, and bless you right back erin.
I should say these are the things the doctor told me to stay away from when I start the regimen.
Dr. Vijay Kamat - B.A.M.S (Medical Director - Ayurveda)Materials to Avoid or Limit While Using Homeopathic Remedies
• Mint in any form: mint candy, toothpaste, mouthwash, or menthol cigarettes.
• Caffeine or nicotine in any form, such as (non)carbonated beverages, coffee, chocolate, or cigarettes.
• Omit or separate by one hour from remedy use.
• Any volatile or odiferous material such as paint thinner, eucalyptus, camphor and menthol (as in muscle and joint rubs), moth ball fumes or perfumes.
• Marijuana and excess alcohol can also interfere with the action of remedies.
• Raw garlic- omit or separate by 1 hour from remedy for use. Cooked garlic is acceptable.