Hi Liz. I’m so sorry to hear about your continuing severe pain. I wish I had a magic wand to make everyone’s TN disappear, including mine. Fortunately I do go into remission and am in one again for a number of months. I get a stab in the head once in a while when I am in remission, that is why I call these periods “99% remission”. It is always lurking and reminding me who is boss. Good luck to you going forward. Feel free to message me.
It never occurred to me to stop my meds while in remission, I’m wondering why you did. Since remission isn’t a cure and is unstable at best wouldn’t your chances of extending the remission be extended by staying on the meds?
I just read this. Praying you are better now. Mayo is great, but I have had friends that have gone to my doc in Houston,Texas and have been helped so much. Let me know if you need further help. God bless
Hi Azurelle. As I mentioned in an earlier post, I differentiate between “pain remission” and “true remission”, the latter being “no pain, no meds”. In my 5 1/2 year battle with TN, the meds have somewhat reduced the frequency and severity of the painful attacks when times are bad, although I have questioned that. I have never thought for a moment that the meds actually caused my periods of remission. When the pain completely stops for a couple of weeks (it has happened twice now), that is my signal to wean myself off of the meds per my Mayo neurologist’s recommended approach. Then I get back to my life with none of the 16 side effects that I have experienced at various times with Gabapentin and Oxcarbazepine. I don’t even feel human with some of those side effects. In the past 5 1/2 years I have had 4 1/4 years of med-free, “99% remission” where I get nailed with a type-1 stab on rare occasion (left-side V1, right-side V3). I just briefly gasp in pain, people look at me in a startled fashion and I just say something funny if those people don’t know that I suffer from TN. Those that know that I have TN just continue the conversation since they know that it is awful but I’m not going to fall over dead. They also know that I don’t want attention paid to my condition. In other words, “I don’t want to be my disease”. When and if the next nasty relapse occurs, then I will re-evaluate with my doctors if I go down the meds path until the next remission hits for some unexplainable reason. Take care of yourself and good luck to you.
Hi Cherly2. Thanks for the note. I remain in my “99% remission” from TN and am drug-free once again. Such a strange condition that we suffer from. How I could go from 30 episodes in December of falling to the floor and screaming in pain for 5-minutes to an hour, then it decides that it is done torturing me and I can get off the meds and lead my life again…until next time. Fortunately I am not an anxious person, so I don’t ever ask myself if today is the day it comes back. I just assume that it will not and try to have fun every day. Besides, I now have Parkinson’s symptoms that I am trying to attack as hard as I have my TN. Never a dull moment as we get older. Take care and good luck to you. Treasure every pain-free day.
Yes it is a very strange condition. I had MVD in Dec of 2012. The doc told me he had never had someone decide to have surgery 7 months after the first “jab”. That is the way I handle things. Head on … I was really good till Nov of last year. It isn’t near as bad as before if I control my triggers. The worst one is talking and since I am an educator it forced me to retire early. But God is faithful and this horrible condition has allowed me to share my faith and many people have accepted Jesus. I would not have chosen this path, but HE is faithful and so I press on.
So glad you are pretty much pain free. take care.
I did not take meds for years after my MVD. IT WAS PRETTY GOOD AND I LOVED BEING OFF THE MEDS. TRY IT. YES I HAD TO GET BACK ON SOME MEDS, BUT GETTING RID OF AS MANY TRIGGERS WAS THE BEST. TALKING IS MY WORST AND I WAS AN EDUCATOR SO I HAD TO RETIRE EARLY. IT IS TUFF, BUT THE PAIN IS SO MUCH BETTER.
Just want to say that Sean1 is right on in everything he says here…25 years after my first stab at 13 years of age, a number of severe episodes, tons of research, and getting to be 100% pain free without ever touching drugs or surgery has convinced me of the same things Sean1 mentioned. Using olive leaf, silver, raw honey, raw garlic to boost immune system and control the virus is extremely effective. Another suggestion is to read the Mind Body Prescription by Dr John Sarno. I don’t agree with everything he says, but there was a strong connection for me between emotional pain, and a suppressed immune system. May God bless you and give you strength for the journey…keep heart!