hi, it wont no mater how long you wait it will be there. I’ve had PSR,cyber knife ,gama knife,and now MVD. and I can not hear out of my right ear (the side that has/had tn) I can not taste anything , I have very bad balance now and a numb face on the right side. Good luck in all you do. Does this seem hard to hear? But it all the truth and maybe it’s not very encouraging but the pain it’s either. We have it end of story. Guess I 'm not very on top of it today. I usually not this bad. SO off I go to feel sorry for me for a little while.
I hope somehow,something works for everyone.
It is very unpleasant to listen but reality is that this facial pain will leave you after death. There is no medicine for this. The only and permanent way is MVD surgery. My mother suffered from it 30 years. Now she is fine after successfull MVD surgery done 7 mothe before. She has left side facial numbness after surgery but it is better then this pain.
Hi Elaine, I have had Trigeminal Neuralgia since February 2004
But I have been in remission now for 12 months, only twinges.
Plus off all meds. So hoping I have found my cure.
I started about 3 years ago, taking 1000mcg B12 daily, under the tongue. I continued this for two years as I recognise that I have a few nerve issues and B12 builds the nerve sheaves. Seeing the neuralgia is a blood vessel rubbing on a nerve, if the nerve is better protected, it should help or at least lessen the pain (electric shocks). My doctor monitored by B12 levels thru annual blood test. After a year, I could feel the difference, more times in remission for months, less nasty attacks.
Then about 2 years ago I started using Turmeric root Curcumin which is a powerful anti-inflammatory. I grate 1/2" of the root onto my food daily.
Now I am taking 1000mcg B12 twice a week and Tumeric about every second day. I grew some of the root, which grows like ginger. Now I supply a local green grocer with organic Tumeric, cause I have so much… Be careful, tell your doctor you are taking it as it is a natural blood thinner, so they need to be aware it may conflict with some other medications you are taking. My main meds was Tegretol carbamazepine as I could not take Lyrica or others, got bad side effects. Even on large dose of Tegretol 1200mg I got drug induced Lupus.
If I get any twinges, I will increase my B12, but have had none for 6 mths now… Hope this helps. I am 70.
The other thing is to keep busy, doing what you like.
I have a vege garden, also orchids & Roses. I am a volunteer,
I drive for our local Community Care taking our older people to appointments or hospital. I am the Treasurer of our local Lions Club and involved in all sorts of local events, markets, parking, local show, Plus also member of Natural History, go walking with our Bird Group, take photos & compile our Walk Reports with the photos & upload the to the website.
My neurologist says I am also good at blocking pain as I have learnt to focus on what I want to do, not the pain.
Hope this gives you something to work towards…
Hugs from Gail Patricia xxx
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Hi Eliane,
I can’t imagine having TN for 12 years, I had it for 1 year extreme pain ~ then found out the root
cause of it with two Naturopath doctors ~ I had heavy metal toxicity ~ high levels of aluminum, mercury, nickel, copper and cadnium along with pesticides ~~ I highly suggest getting a hair analysis done to see if any heavy metal issues might be causing your pain. I was off work for a whole year my pain was so bad ~ I could barely function, lost over 40lbs. etc. etc. Back and forth to speciality dentists and doctors ~ all just wanted to treat the symptoms ~ not get to
the root cause and correct that to heal my body.
Hi
What did you use to detoxify?and how long did it take.
I night go for a hair analysis.Any tips.
Thanks
Hi Ellen,
I had another underlying issue that I found out about with all of this, so it took me longer.
I had breast implants for 30 years and I was trying to detox (mine ruptured during a detox massage -
and after I had them explanted, I was able to detox faster) After reading lots of info on breast
implant illness ~ all of the natural doctors were saying its like swimming upstream, trying to detox
while these implants are still poisoning your body ~ So after a grueling 4 1/2 hour surgery to remove
my implants, which was May 2015, it took about a year to detox, but my extreme pain subsided
maybe 3 months after the surgery. My white blood count had been low for the last 2 years and
my PCP had me going to a cancer dr. ~ ( I really feel in my gut and heart that this would have led to cancer
if we didn’t find out about all of this)
The chemicals and heavy metals affected my whole nervous system. It was awful, then maybe
7 months after my surgery the silicone started detoxing out of my tissues and that was
all arthritis pain ---- for that I did mostly the ionic foot bath. For the rest of the detoxing, my dr. does the
nutritional response therapy ~ which is applied kinesiology and muscle testing to see which supplements
would help. Below is a brief list of some the supplements, but it did change and he also suggested certain foods to avoid and eat,
which was all very personalized after testing each patients organs, with kind of the same protocol an
acupuncturist would follow to determine a weakness in the organs.
After a hair analysis, maybe finding a dr in your area that uses the nutritional response therapy could help.
The place that I got my hair analysis would mail a kit https://www.nutrifarmacy.com/ it seems they
are getting a new website
~ so all the info isn’t showing but the hair analysis kit was $88 and it was very comprehensive ~
they send the results directly to you ~ a nice booklet that is easy to read.
MSM
Vitamin D
B12
Multi B Vitamin
N acetyl cysteine
L glutamine
L carnitine
co Q10
Dr. Schulz Super food
Well ~ I think I was rambling, lol. Sorry if it sounds confusing.
Keep me posted on what you decide to do. Sending lots of healing prayers your way.
Blessings,
Karen
Hi Karen
\Thanks for the response.Been crying my eyes out.Last hope specialist today
thinks taking extra strength tylenol(along with my s-load of tylenol 3’s is
gonna fix the problem.Tomorrow I might laugh-today I am devastated that
this is what the health care in canada has come to.
Ellen I am so sorry. It’s so hard to get your hopes up, then realize you know more than the doctors. I’m losing faith in mainstream medicine quickly, and thinking maybe a naturopathic/homeopathic/nutritionally oriented doctor might have some better answers, like the one Karen went to.
Hope tomorrow is a better day for you and all.
Thanks
I guess the problem,at least in Canada,is that the naturopathic doctors cannot prescribe pain meds-and really-if we were not in such pain we would not be going to doctors.
I spent money last year on a naturopath that was wasteful-but I did get a nice walk in.
It is just so brutal
Mainstream medicine could not help me ~ only with treating the symptoms with pain meds.
and maybe surgery on the TN nerve.
I wanted to find out what was causing all this extreme pain ~ not cutting it out and blocking the pain. So my root cause ended up being being pesticides and heavy metals. (My root root cause - if there is a term, haha ~ would have been my breast implants) A good book to read is Tox-Sick by Suzanne Somers. I was fine (meaning no pain) until pesticides tipped my
scale of an already toxic body and started causing all the TN pain.
Hi Ellen,
See if there is a doctor in your area that does the Nutrition Response therapy.
They can get to the root cause of what is happening and how to treat it.
Karen
Hi Karen
thanks I was seeing a naturopath that was doing that-I guess-sit in a chair and find the response to the supplements.
If any one knows of a naturopath that has experience treating facial pain in the Toronto area-I would love that info.
I,too,prefer to find out the cause-not just cover up the pain.But no one has given me a diagnosis yet,my feeling is the mental branch of the trigeminal nerve got a needle stick injury at a dental appointment.I am not dentist bashing.that is the thing that makes the most sense.And because I was asleep,I don’t know for sure.
I am going back to physio for cranio sacral treatment.
And next time I see that book I will pick it up.
I hope you are OK now
I certainly understand how terrible you feel. I am sending all of my energy to you for blessings to help you through this. Try watching some movies (I watch them in my bed) that may make you feel better or help to take your mind off the pain. Will it ever go away? I saw miracles happen to people with cancer so yes I would have to say it can go away someday. In the mean time I will pray for your wellness. Many blessings upon you.
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Hi again,
I’d logged on here, but didn’t see the message! I’m sorry!
Unfortunately, I don’t know too many details. A friend of mine commented that she had nerve pain due to a virus. If I remember correctly, the nerve was aggravated from the virus, and resulted in the pain symptoms. So it wasn’t TN As a result of a compression. And it did eventually clear up.
Regards-- tiffanie
Thanks for letting me know, Tiffanie. As I said, very interesting idea. Unfortunately I didn’t have a virus before my onset (that I know of!) but you never know…
I did get a hair analysis, all was okay. no toxicity…
My TN has just come back… only lightly but increasing on cold nights.
I am wondering if some stress in my life has brought it on… Never been able to put it down to stress in the past… My ex-husband has just had his larynx removed due to cancer from smoking & drinking too much… now has a hole in his neck to learn to talk thru. I was the only family contact for the first week, until I got him onto the hospital WiFi - now he can email with family. He was in Intensive Care for 2 1/2 weeks, now moved to a ward.
I have gone back to 1000 mcg B12 /daily. as had backed off to 3 times a week… but it will take time to build up. My doctor ordered a blood test to check B12 levels, high but not over the top…
I am dealing with the few attacks, about 3 or 4 a week… and can sit them out and let them pass, by trying to relax, smelling oils or perfume which relaxes the muscles in the face and helps. also heat packs… Hoping it will go away again as 14 months no TN was a lovely break. xxx to all
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Hey…wat are your pain symptoms??
So sorry I am so late, but I meant to say that I am so grateful that you finally cleared up. I wish eternal blessings upon you to stay well. Blessings,
barbiedollstars:smile:
Hi Elaine,
I have had TN for about 3 years and finally got a correct diagnosis about 20 months ago. My pain ranged from ear aches to tooth/jaw pain and it came and went. Finally it set in with shocks to the face about every minute or so. I was incredibly miserable as many of you have experienced. Fortunately my family doctor recognized the symptoms and got me into a neurologist quickly. I have responded extremely well to Trileptal. Started at 600 mg/day but reduced it to 450 because of hyponatremia (low salt). I always have a sensation in my right ear that reminds me I have TN, but no real pain, discomfort or side effects to speak of.
My neurologist claims that Trileptal is the most effective drug treatment for TN and has the fewest side effects. So far that has been the case for me!
I hope this story gives you some hope!! Everybody has a different experience. If you haven’t tried Trileptal perhaps you can ask your doctor. I get the generic version and it is only $56 for a 3 month supply,
I suspect there are a lot more success stories out there than you see here because if you are in remission you are less likely to get on these blogs. (I think it is only natural for people to avoid the TN topic because the memories are indeed painful )
All the best in your recovery
Tom
Tom
PS–
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