Desperate
Posted , 8 users are following.
I had MVD surgery in September of 2017 after having gamma knife surgery in December of 2016 which failed. It has been 7 months and I am beginning to get pain back on both my right and left side infrequently. The problem that I am having is that my entire right side of my face my right side of my nose my right side of my upper lip the right side of my lower left the right side of my chin the right side and tip of my tongue have tingling and numbness like a thousand ants we're crawling on it. I am so desperate that I am having thoughts of harming myself. I don't know what to do I feel hopeless. This is happening 24 hours a day 7 days a week. The only relief I get is when I asked sleep. I am on 1800 mg of Gabapentin. Will this ever go away or is this the way my life is going to be? I have TN pain in my lower jaw the bridge of my nose where I can't wear my glasses shooting pains in my temple area and numbness around my eye as well. I simply cannot take this anymore. Has anyone else been in my position and what in the world can one do?
2 likes, 31 replies
vicki78970 kevin18765
Posted
There is a couple things you can do. Please don't give up Kevin! This is called the suicide disease for a reason.
I felt the same way. I am a Christian & rely on the Lord for everything.
He led me to an article in a magazine about Turmeric. It's a spice you can buy in a gel caplet. I take 800 mg in the am I am pain free for 12-14 hours. For some reason it doesn't work at night.
At night I take the prescribed carbamazapine. (I do not take this during the day)
If your insurance will pay for acupuncture or if you can pay for it, go. My pain was gone by the 2nd time I went.
It did come back so I went a few more times. I was pain free again but I ran out of money quickly.
Through the acupuncture you can get totally free. Some times it takes 10 times.
Also try a mouth guard. A lot of people grind their teeth without knowing it. (You may not be able to wear it right away but you will within time.)
Sedative tooth paste is a must
Avoid sugar, anything with tomato's in it, fruit (it has natural sugar)! Try to go glutten free. Eat a lot of vegetables & protien. Please let me know how you do. I'll be praying for your quick relief.
Also I read another article. It said to microwave 1/4c. of milk for 45 seconds. let it cool. Swush in your mouth for 5 minutes. Do this 5 times a day for 7-10 days. It said it heals all nerve pain!
gill32586 vicki78970
Posted
Hello Vicki, I, too am a committed Christian and regularly pray for all those with T.N. It's good to find a like-minded person. I'll certainly try Turmeric. I've had every sort of treatment. Unfortunately, acupuncture was no help in my case, but we all respond differently so I do hope it helps others. I'm veggie so eat lots of fruit which seem to have no bearing on the disease in my case but well may for others.. I'll also try the milk you suggest. God Bless you. Gill
vicki78970 gill32586
Posted
Just sent you a message. Give God the glory every day for his mercy! I stand on his word "By his stripes we are healed!" So glad to meet someone of the belief & Faith. Stay strong in the Lord. He brought us to this sight for a reason.
The Lord's blessings to you!
kevin18765 vicki78970
Posted
vicki78970 kevin18765
Posted
Kevin I am so sorry you are going through all this pain. Don't give up! There is hope. Acupuncture can take the pain away. Could take 1-20 times. My insurance didn't pay. After 2 treatments the pain was gone! It did come back so I continued to go until the pain was gone again. 800 mg of Turmeric in the am takes the pain away for 12-14 hours. You can buy this at any store. It's a spice that's very effective for relieving pain. It doesn't work for me at night so I take the prescribed meds at night.
Stress is very bad for TN. I had to change my eating habits. No sugar or anything made with tomato's. These were triggers to set it off. Also no fruit (natural sugar. Pray you find relief soon!
kevin18765 vicki78970
Posted
I will have to do some soul searching. Job and home life very stressful. Maybe this where I should start. Thank u Vicki.
kevin18765 vicki78970
Posted
I will have to do some soul searching. Job and home life very stressful. Maybe this where I should start. Thank u Vicki.
vicki78970 kevin18765
Posted
You are welcome. Please make sure you follow some of the other advice. I can same I am pain free now. I still take the Turmeric every morning & Have cut down on the Carbamazapine at night. I keep taking these because I am so afraid of getting the pain back, never want it again!
colin69485 vicki78970
Posted
Hi. I'm absolutely bowled over by reading about the successes experienced by taking turmeric! I wonder if there is any correlation between the incidence of TN and populations who eat this spice as part of their normal diet? Do Indian and Bangladeshi communities, for example, tend to suffer less from this wretched disorder? I shall trawl through the literature, meanwhile it would be great to read about other people's experience from taking turmeric.
I often read, with some scepticism, that patients get relief by taking all manner of unlikely remedies - tomatoes, peanuts, ginger etc. etc., but have to remind myself that things work in unexpected ways and we all react differently, so keep an open mind, is the approach. If it works then keep taking it and spread the word. I feel a curry coming on😋!
vicki78970 colin69485
Posted
Thank you for your enthusiasm! If my story helps just 1 person it was worth telling! It is a total change of life style. No sugar, no tomato products (because of the acid, no fruit because of the natural sugar) These trigger an episode.
I do take a green drink to get my fruits & vegies. Avoid stress at all cost & drink plenty of water.
I'm trying hard to stay away from junk food,! My excuse some times is "A girl has to eat" lol
kari40524 kevin18765
Posted
I have TN2 (atypical) trigeminal neuralgia. I have the constant 24/7 aching, burning, and throbbing in all of my teeth and gums. Wearing a mouth guard, eating, and chewing gum eliminates all of my pain. I usually wear the mouth guard at night and chew gum during the day. My pain began a year ago and the dentist thought I needed a root canal. The root canal only made things worse so I had the tooth extracted and an implant placed. The pain still would not go away. The oral surgeon diagnosed me with neuralgia and suggested that I see a neurologist for pain meds. I have chosen to stay away from pain meds since I've found natural relief at home. B12 deficiency can cause a lot of nerve issues so I began weekly injections about a month ago and am supplementing at home with B12, ALC, flaxseed oil, and GABA. I'm taking anything I can that helps reverse nerve damage, repairs the myelin sheath, and helps nerve pain. I was having other symptoms of low B12 that went away the first week of the injections. Unfortunately, nerve repair can take months. I feel like I'm on the right road and am trying to avoid doctors aka "pill pushers" for now. That will be a last resort due to side effects experienced by many.
kevin18765 kari40524
Posted
colin69485 kari40524
Posted
I read your comments with much interest. Part of the problem is 1) it isn't proven that the myelin sheath does repair itself in this way and 2) which particular medication, if any, is effective or not in targeting damaged sheath.
I believe there is a huge opportunity for sufferers of TN to use this site to share information and experiences. With this in mind, I'm not sure that dismissing doctors as 'pill-pushers' helps our cause! We need everyone in our 'team' and should approach everything with an open mind. I'm about to change my medication following a consultation with a neurologist in whom I have to put my trust. It doesn't mean his recommendations are the answer or that I will follow them blindly but I can only approach things in a logical and scientific way. I'll keep you informed of the outcome and please update us all on your success from following the nutritional route.
We all are seeking the same end result. Colin
kari40524 kevin18765
Posted
The myelin sheath can definitely repair itself over time. We just have to give our bodies the right nutrients to give it a little push. I do not go to a doc for my B12...most places that do lab tests or medical spas give them. Make sure and also supplement at home with a sublingual under the tongue in methyl form. Also take a good B Complex since they all work together. Just don't go over 200 mg with B6. Also, good Omega 3 oils, especially flax seed helps coat the fatty myelin sheath for added repair. Acetyl-L-Carnitine (ALC) is also a great addition for nerve repair. I've also been on a very low inflammatory eating plan. No MSG, no additives or preservatives, no gluten, no dairy, no eggs, no meat...basically just fresh fruit, veggies, and fish a couple times a week. I am slowly weaning off of caffeine since it can affect blood vessels. I hope this info helps someone out there. And try the mouth guard and chewing gum. It gives me pain free days and nights while I tackle the cause of this issue. Good luck with your journey and don't give up hope!