[everlasting]

hi my name is everlasting. i have had ms for 19 years but also developed trigeminal neuralgia and anesthesia dolorosa as a result of various surgeries and a brain surgery that was unsuccessful. my story is to long to share but i will say that the pain from tn and ad has dramatically changed my life. i suffer fron excrutiating pain for several years.can anyone out there who is suffering from tn and ad share with me what has worked for them to make this pain tolerable and improve the quality of their life?can you please share with me any medication and pain meds, dosages that have helped them? i have several md"s who want to put a morphine pump in me but i am refusing. i continue to hope that the right drug combination will help. hoping to hear from someone, i would appreciate any support thanks, everlasting

[Burntmarshmallow]

here is a thread about a couple of us that have t.n, A.D. and other issues
http://neurotalk.psychcentral.com/thread45717.html
also i think doodle bug will be by sometime and see this post.
A morphine pump was one of my final options But I chose a trial of a neuro stimulator the trial went awesome and now I am med free. NOT pain free but the neuro stim has given back controll enough so that I can have some kind of normal life. I do have good days and hell days but not like I used to get.
I forgot to welcome you here sorry bout that. welcome sorry this illness brings you here but it is nice to be able to meet others and share.
You can find info from the stickies at top and links we have here, and if we can help or ya feel like just chattin let us know. and you can message me anytime. Low pain wishes on you everlasting.
Peace
BMW

[everlasting]

Originally Posted by Burntmarshmallow

here is a thread about a couple of us that have t.n, A.D. and other issues
also i think doodle bug will be by sometime and see this post.
A morphine pump was one of my final options But I chose a trial of a neuro stimulator the trial went awesome and now I am med free. NOT pain free but the neuro stim has given back controll enough so that I can have some kind of normal life. I do have good days and hell days but not like I used to get.
I forgot to welcome you here sorry bout that. welcome sorry this illness brings you here but it is nice to be able to meet others and share.
You can find info from the stickies at top and links we have here, and if we can help or ya feel like just chattin let us know. and you can message me anytime. Low pain wishes on you everlasting.
Peace
BMW

Hello, it was so nice of you to respondi also was a canidate for a deep brain stimulator but medicare will not approve it for ms patients only parkinson's disease. what kind of stimulator do you have. i am so happy for you that it has helped. i apologize for the messey reply but my ms causes me to have tremors. also i am blind in one eye due to one of the tn surgeries i had. keep in touch and get back to me regarding your type of neuro stimulator. god bless

[EE03]

I'm sorry you've got to deal with TN on top of everything you are already dealing with. MS alone is enough. I can't offer any specific med advice to you as I'm a med challenged person and the meds I take don't completely cover my pain. I have spent a lot of time working on Mindfulness Meditation though, and it has helped me to deal with my pain and to accept what my life is now. It isn't just about meditation and can be misleading in its title. If you have access to a library, you should ask them to obtain a copy of Full Catastrophe Living by Jon Kabat Zinn. He is the author and he also has the book on tape/cd. There are several other authors out there and if you ask the library for anything dealing with "mindfulness meditation" I'm sure they should be able to find other books for you. It took a lot of practice for me to get beyond the pain, but once I did it, it is totally amazing. The only problem is that I can't stay in that state 24/7, but it does offer an escape and changes the way I experience my pain, even if its only for a short time.

Take care and best wishes to you, Ellena

[Doodle bug7]

Hi everlasting...You certainly have your hands full.
The first time that I got a blast of pain from TN, I was petrified. It was such a
Shock of pain running through the left side of my face from the ear to my mouth. I honestly thought that I had a stroke, not ever having this type of pain before.I was scared to death. I made a quick appt. with the Eye, ear nose and throat Dr. Right away he knew what was happening and he gave me the diagnosis of Tic Dularoux. I had never heard of such a thing. After the diagnosis was made, he out me on 100 mg. of Dylantin and 30 mg. of Amytriptiline to be taken at bedtime.This is the amazing part, It held me for 10 years. I thought it was over for life. Meanwhile during that 10 yrs. I met and married a wonderful man. I told him about my medicine. We were Christmas shopping when I got hit with a ping on the left side of my face. I immediately stopped talking. I wrote him a note and told him what was going on.
From that day until now, my life would never be the same. The chain of events that were about to unfold was devastateing .I would never have a pain free day again.I was admitted to the same hospital that I worked at.I was there for 9 days with a morphine pump. I was put on hold until a neuroligist in Kansas city could do a procedure called a microvascular Decompression. To make this story short or shorter, I had the surgery done.
It failed. Within the next month, I had two Balloon Compressions and they
failed.When a M.V. surgery is done, the Dr. goes in the head right behind the ear on the side where the T.N. pain is. He puts a teflon pad between the
nerves that are rubbing together. The Balloon surgery is where they push a needle into the cheek to the base of the skull and try to destroy the trigeminal nerve. During this time, I lost weight and became dehydrated.
I was not talking or eating. I felt so lost and was in the darkest time of my life.The TN pain was relentless, I just wanted to put an end to it all. A last resort was Mayo clinic in Rochester Minnesota. My husband was my pillar of strength. We made the drive through a snow storm in DesMoines Iowa.
I lay in the backseat the entire trip. We went right to the emergency room.
They quickly admitted me and we met with a neurologist , who was one of the best. I was scheduled for surgery two days later. He was going to try to partially cut the trigeminal nerve. I had surgery on Thursday. It threw me into
continuous spasms of pain. They put me into the pain unit for a couple days, then took me to surgery on Monday. As a very, very last resort they severed the trigeminal nerve. I was in such a fog, I can't remember much of what was
said and done. I was at Mayo for three weeks. The left side of my face is totally numb which presented with it many problems with my eye, nose, and ear. I have a tube in my ear, a plug in my eye (after 3 procedures trying to get it right.)I also fell pray to a different kind of pain that I didn't even know the name of, or that existed. Anesthesia Delorosa. The dreaded complication from the three brain surgerys. This is five years later and the pain is relentless. It is there 24/7. But..it is not a scarey pain like the TN pain. It does not petrify me although it does get severe at times, ( like most the time) I go to K.C. to a psycholigist once a month and try to make sense of this somehow. I have some recordings from him that border on relaxation and concentration. Its almost like a self hypnosis. You would be amazed at the places it can take you to in your mind. There are no meds to make the pain stop and no surgery. I take about 20 pills a day but I guess it just helps take the edge off. When I had TN, I tried tegritol and it mad me break out in big red dots like measles.It took a week to get rid of them. Neurontin is a typical med. for TN. I am on Neurontin, Amytriptiline, Lyrica, Hydroxizine ,peroxitine,
peroxicamand requip for restless leg syndrome. (Like I really needed R.L.S)
I also fell and broke my pelvis last year and had a bout with severe sciatic pain, one leg is shorter than the other one so I have to walk with a cane.
Dr. ordered Physical therapy for my leg, after 9 months on coumidin for a blood clot in my leg.I have accepted this living of life as it is. I spent a lot
of time feeling bitter about the load that was dumped on me. I'm still working on that. It takes a lot of negative energy from me.
You will get a wealth of info. here on NeuroTalk and some very kind people to talk to about mind and body. Some very inspirational people that may have an
affliction far worse than mine. I have faith that you will find your way.
Truely a believer,
Doodle bug7

[Doodle bug7]

Hey BMW you know me to well. You knew I couldn't miss that TN story!
TRUELY,
Doodle bug7

[sheri4ms]

Originally Posted by Doodle bug7

Hey BMW you know me to well. You knew I couldn't miss that TN story!
TRUELY,
Doodle bug7

Thanks for sharing your story, wow you have been through a lot. Do you by chance also have MS?