Hi I am fairly new to site I usually just read other discussions, but today its all hitting me . I Have ms and have for 20 years and have dealt ok with that now this has hit full charge and not sure how to deal with this. I do not like taking all the drugs do not like side effects. And after reading different posts it really is hard. I went to pain dr he said could do a V3 pain block. I am just not sure what to do at this point. I guess I have had Tn for a couple of years always just thought had to do with ms, and it nerver really bothered me too much. This time taking neurontin has not completly helped and has lasted longer than usual. So do I just give it some more time and see what happens. Sorry I am rambling but needed this. Was this or go throw something ...
Welcome and sorry you are here--I have been a success story so far -- and I believe it is 100% due to my learning - not the little my neuroligist knows about TN -- he was helpful - but I had to ask for things or decline things - according to what others who lived it - have tried.
Do you have type I / the lightning bolt zaps / or type II where you have a constant burning pain?
Most of us here - learn what we know from here and know more than many doctors on the subject ---- after much time spent researching
You have to find out what options are best for you -- if your doctor is not a TN specialist = ( has a caseload of 5+ per month roughly) you need to do your own homework -
or have it done for you if you have a loved one who is involved in your struggles
your options will be different than many of us ---- and the same as many of us--hold off on anything major till you know all your options.
The best place to start for me, was getting the book "Striking Back" by Dr. Ken Casey
90% of all treatments I've seen discussed here - are in that book --- then I read what I wanted to try, read what I wanted to avoid, and then came and got advice from those in the trenches
Here is one example from the book paraphrased:
A Study at UCLA looked at procedure "A" on 41 patients with classic TN (That is TN1)
, 12 with MS and 7 with atypical TN (TN2)
After two years 56% of the classic cases had excellent results, 32% had good results and the remaining 12% had no or little improvement
The 12 MS patients fared worse - only 58% had significant relief two years out.........
This study was done in 2003 -- I would read about all treatments - taking MS into account - and ask every question and read all you can.
There is an MS group to join above! You should get tons of help there too!
I am just more focused sometimes on people getting the best care as fast as they can - and unfortunately it falls on our shoulders much of the time.
Another tip from me personally - is before and after MVD surgery I got much relief from RX topical lidocaine patches!
Kimberly
Hi Kinberly thanks for your reply.
I guess I have Type 1, my neurologist has never said what type for sure but I have kind of figured that out from reading different things on this web site. And I am not just jumping into anything other than the medicine at this point I want to research first and see what others have done.
I know from the ms that I probably know more than most doctors on the subject and that is from research.
I was just so frustrated yesterday and overwhelmed by everything.
Thank you and I will keep researching
Melanie
Kc Dancer Kc said:
Welcome and sorry you are here--I have been a success story so far -- and I believe it is 100% due to my learning - not the little my neuroligist knows about TN -- he was helpful - but I had to ask for things or decline things - according to what others who lived it - have tried.
Do you have type I / the lightning bolt zaps / or type II where you have a constant burning pain?
Most of us here - learn what we know from here and know more than many doctors on the subject ---- after much time spent researching
You have to find out what options are best for you -- if your doctor is not a TN specialist = ( has a caseload of 5+ per month roughly) you need to do your own homework -
or have it done for you if you have a loved one who is involved in your struggles
your options will be different than many of us ---- and the same as many of us--hold off on anything major till you know all your options.
The best place to start for me, was getting the book "Striking Back" by Dr. Ken Casey
90% of all treatments I've seen discussed here - are in that book --- then I read what I wanted to try, read what I wanted to avoid, and then came and got advice from those in the trenches
Here is one example from the book paraphrased:
A Study at UCLA looked at procedure "A" on 41 patients with classic TN (That is TN1)
, 12 with MS and 7 with atypical TN (TN2)
After two years 56% of the classic cases had excellent results, 32% had good results and the remaining 12% had no or little improvement
The 12 MS patients fared worse - only 58% had significant relief two years out.........
This study was done in 2003 -- I would read about all treatments - taking MS into account - and ask every question and read all you can.
There is an MS group to join above! You should get tons of help there too!
I am just more focused sometimes on people getting the best care as fast as they can - and unfortunately it falls on our shoulders much of the time.
Another tip from me personally - is before and after MVD surgery I got much relief from RX topical lidocaine patches!
Kimberly
Don't forget - You can come here to vent as well!