Ted, I hope you have some meds to deal with the pain and a good neuro. How about pot?
You have to be your own advocate with the medical profession. I searched for and built a team of doctors for 6 years. I tried many medications, accuputure, botox and any other therapy I could find. I eventually found a surgeon and had MVD. I continued to work through the 10 years of suffering and raised 3 children. It was hard and there were so many days I could not be part of my life.
It is amazing what we can handle when faced with adversity. I do hope you have a support system. You have more on your plate than most. Find a good neurosurgeon and fight for what is best for you. You are a hero...to yourself, your wife and your children.
This site was what helped me the most. The information found here will give you the strength and courage to move, even if it is an inch at a time.
Wishing you a pain free life.
for me, i really think that it is /was 100% of the pain you could feel in that area. i could not move when it hit, and it would be multiple minutes long each time.
you survive by just not stopping. the meds only helped a little for me and surgery seemed the best option. that had its own challenges and now i just hope it does not return ;-]
i hope you find an answer, till then hang in there.
Hi Ted. You've come to a place of many caring people who understand the pain, misery and life-changing impact of this awful condition. You'll also hear a lot of ideas on treatments to try and suggestions to help guide your doctors. That's right, if you really take the time to educate yourself through this site, through reading the "Striking Back" book, etc. you will quickly surpass the knowledge of most doctors, many of which will have never heard of TN or certainly never treated someone with it. You need to seek out neurologists and neurosurgeons who have successfully treated numerous patients with TN.
I'm in my second year of painful type-1 (mostly) and type-2 TN pain in my left forehead, but have been largely in remission for the past 7 months. I know that it will likely come back, and perhaps worse, but if it does, I will be more prepared to deal with it physically and mentally. Education is key to helping manage your condition. You have to advocate for yourself.
I wish you the best my friend. Life throws us a curve sometimes. None of us ever see this one coming. Take care.
I am so sorry that you have so much really hard stuff on your plate right now Ted. Wish there was a magic pill to give you and make this bad stuff disappear. All i can say is that you have a huge group of friends here to help carry the load and that you are not alone. Hugs
THE RITALIN MADE IT SO I could read …focus…energy… It’s like trileptal that turned me into slug…gave me back my normal ish brain. My neuro gives it to epileptic patients rat have noooo energy and noooo focus ! It’s an ADHD med like adderall.
tkal said:
What does the Ritalin do?
Kc Dancer Kc said:I came here and found tools!
Lidocaine cream or patches OR both
for face......dr got me an RX
I was able then to have lower dose of crappy TN meds.
Next
I asked neuro to give me a one months RX of Ritalin ...... I used them sparingly to research my MVD surgeon, and all I needed to know, learn
and to have energy and focus .
I read and printed THE SPOON THEORY from here or google .
TN is fine now with no pills or creams , @ 2 years..... But it's remission time, and not forever, so I hang out here where I can help...... These people here got me through, with a previous script of anti depression, and a lot of hope!
Thanks, I used to take it as a kicker for antidepressants but never thought of it for use with antiseizure meds.
Kc Dancer Kc said:
THE RITALIN MADE IT SO I could read .....focus.....energy...... It's like trileptal that turned me into slug.....gave me back my normal ish brain. My neuro gives it to epileptic patients rat have noooo energy and noooo focus ! It's an ADHD med like adderall.
tkal said:What does the Ritalin do?
Kc Dancer Kc said:I came here and found tools!
Lidocaine cream or patches OR both
for face......dr got me an RX
I was able then to have lower dose of crappy TN meds.
Next
I asked neuro to give me a one months RX of Ritalin ...... I used them sparingly to research my MVD surgeon, and all I needed to know, learn
and to have energy and focus .
I read and printed THE SPOON THEORY from here or google .
TN is fine now with no pills or creams , @ 2 years..... But it's remission time, and not forever, so I hang out here where I can help...... These people here got me through, with a previous script of anti depression, and a lot of hope!
This morning was a long one in my eye over a half hour could not move without stabbing harder in my eye,
Ritalin? Never considered it. Kc were u taking anti seizure too? Oh ted I’m sorry I no how hard this is. I had a terrible time yesterday in my ear and today I ache. Hang on in there x
I am a manager which is stressful . But i try not to think to far ahead so fear and anixety does not sit in . i have 5 childern 3 inwhich are still at home. The biggest motivation i have and has been the same for many years. is simple take care of the kids and also i like eletricity food and roof over my head… I sometimes do not know how much longer i can keep it up but like i tell my co workers dont physic yourself out or you are setting yourself up for falure everytime . if i can fo it you can do it and do not ask anyone to do something that i can not do… key is trying to stay focused on what you have on hand . i am in constant pain . i also have fibromyalgia. alot of them dont know i have a secert “tn 1 and 2”. It is not easy . i can be tough … i have some pretty rough days … so i send you well wish and try not to lose hope … I do not know if this has been helpful and its tiring mentaly physicaly and emotionaly. Dig in to what motavates you and.cling to it like your life depends on it .is my best advice … good luck ted you have alot riding on this
Ted,
I'm very sorry for your troubles. Having all this on your mind and having the pain of TN is an awful lot to manage.
I'm going to hijack your thread for just a quick minute. It sounds like you and I have pain in the same place. Apparently our pain isn't as common as the pain in the cheek, jaw and other places. If you'd like to discuss this make me a friend and I'll send you an email.
To everyone else, I think you've given Ted some wonderful counsel.
I've seen Lidocaine mentioned a couple of times now. I have no idea if it's available in Australia and if not I might have to migrate to the U.S. Strangely enough, I find the numb mouth, toungue and roof of my mouth every bit as unbearable as the shocks! It leaves me very light headed.
The formula here in the USA is benzocaine 20%. The ointment is used for teething babies. If you put a little on the affected area, I have found that it helps me eat my food, at least temporarily. It is worth a try.
WOW Been awhile Since I have seen this post! Thank you all for great advice, Right Now I am doing well on tegretol,other then the occasional quick zap in the eye, I'm doing well and planning on MVD surgery early next year, I have researched this like crazy till it about made me crazy, I have chosen MVD but only if i can get a surgeon who does over 100 a year and that looks like Ill be going to FL or PA here in the states, Even though I live near this big famous Hospital Duke, There is not a surgeon there that does more then 7 or 8 a year , Well My Motto is,, IF you gong to drill in my head you better have done a lot prior to me! Thank you all for you support and here's wishing you all a pain free day
Ted said:
WOW Been awhile Since I have seen this post! Thank you all for great advice, Right Now I am doing well on tegretol,other then the occasional quick zap in the eye, I'm doing well and planning on MVD surgery early next year, I have researched this like crazy till it about made me crazy, I have chosen MVD but only if i can get a surgeon who does over 100 a year and that looks like Ill be going to FL or PA here in the states, Even though I live near this big famous Hospital Duke, There is not a surgeon there that does more then 7 or 8 a year , Well My Motto is,, IF you gong to drill in my head you better have done a lot prior to me! Thank you all for you support and here's wishing you all a pain free day
Mayo clinic in Jacksonville is very good at this kind of neurosurgery. Here is a quote from the "GPN" support group:
"Hello - I have been following the posts on this website. I am 75 years old - it took me 13 doctors and 2 years to finally get diagnosed and treated for GPN. I had a calcified tonsil out because I was told that was the cause, i had an endoscopy, multiple cat scans and MRIs. I was on Lyrica, Gabapentin and Amitryptiline (at separate times) - all of which made me feel weird. I made comments about life not being worth living with this pain. When a pain specialist finally identified GP neuralgia I had it confirmed at the Mayo Clinic in Jacksonville. The neurosurgeon there told me flat out that to get rid of the pain I needed the MVD procedure - not a nerveblock as I had originally anticipated. He said that would not address the issue and the pain would eventually come back. I did an extensive internet search and also came across the MVD youtube video. It really scared me. Additional discussions with the neurosurgeon also made me aware in no uncertain terms that this procedure is not to be taken lightly. Yes, there was doubt if this is the right thing to do, but to have any quality of life my wife and i decided to go ahead with the surgery. I had it done May 10 at the Mayo. The surgeon said the GP and the vagus nerve were wrapped abound an artery. He severed the GP nerve and put a teflon pad between the vagus nerve and the artery. I was one night in the ICU and another 3 days in the hospital. I had really bad headaches the first few days but a week post surgery I was pain free. I have my life back. It is nothing short of a miracle.
For those of you who are contemplating surgery - for me it has worked. According to the neurosurgeon there is no reason to think it will come back. I'll be glad to provide additional information for anyone considering this surgery."
Good luck to you. from Lois
I would like whatever info i can get lois
It sounds like you need to be evaluated by a neurologist/neurosurgeon to determine what surgical procedure (if any) will work best for you. Usually they won't do surgery until you have exhausted all other medical options. You need to try the anti-seizure medications on a regular schedule to see if they bring relief. If they don't, then it is time to consider surgery. The type of surgery you need will depend upon what the MRI scans show. If it is indeed a problem with an artery pressing on a nerve then the MVD is recommended. That is the last resort. Perhaps a glycerol rhizotomy would work for you. They stick a needle into the trigeminal nerve and damage it a little with a form of alcohol so that it doesn't zap you with pain. Doing this once usually works well. It should last 2 to 3 years minimum. If it comes back the second glycerol rhizotomy could have some very unpleasant side effects (like permanent numbness in your face and eye). (this happened to me) First, try a regimen of drug therapy...these usually include gabapentin (brand name Nerurontin), Tegretol (generic is carbamazapine), and lamictal (Lyrica). The Lyrica could really help with the fibromyalgia as well. See your neurologist!!
I am currently finding a new neueologist
Good, feel free to print my reply to you and see what he/she thinks.