My husband and I are flabbergasted!!!! When I called the Neurologist group from the local university I was told to wait for an appointment with a certain Neurologist because he specialized in facial pain.
He is an awesome man and doctor but my 2 visits have left my husband and I realizing how I am going to have to be the one to research and be my own advocate.
1st visit he said, definately TN1 and TN2 and added Tegretal to the Neurontin my GP had given me. I couldn't take the Tegretal because of side effects.
2nd visit he said, Hmmm...you couldn't take the Tegretal...well let me check something. He stepped out of the room for 10 minutes and came back and said, " let's try Tripetal, it has fewer side effects."I told him I was having severe mental side effects and body aches from the Neurontin. He said, you are on a huge dose at 2700 mgs. and you are going to have those side effects.
I shared with him that I had found this support website and he said," what is working for others?" Do you want to try the Lidocaine patches? I have never prescribed them before". He said," you know what you have is very rare."
Again, my husband and I realized, not many doctors have dealt with this before and you have to be your own advocate!
Thank goodness I found a doctor who...believes me, listens, asks questions,and will let me try what I bring to him. If yours doesn't...keep looking...they are out there.
I'm happy for you that you've found a doctor who listens and is open to your ideas. I hope the lidocaine patches will work for you; many people here found much relief using them. Take care xx
It is wonderful when you find someone that is prepared to listen to your ideas and lets you be an active partner in trying to find the best options for you.
After 12 months with my neurologist I have an appointment in the January with a new doctor, recommended by an Aussie member (long story). Already i like the new doctor better, his initial appointment with be approx 60-90mins as opposed to the 7 mins the original neuro spent me with me on my first appointment.
Hope you are able to a combination of meds that works for you.
Goodness. I hate that you had to go through that. My neurologist told me to make sure I tell the appointment desk that I need to talk to the nurse and I need an appointment for TN if I ever need to see him. He will see me ASAP. He is true to his word. He is booked up for months, but I am always worked in. The same with my neurosurgeon. I promise there are caring doctors out there, and I am glad you found yours!
I was able to lower my med doses with patches - but my pain wasn't constant #2 I had/have TN 1
we are 12 in 100,000--Rare indeed!
If it were not for this site - I would have not found lidocaine / Ritalin for focus (meds made me lose IQ)
And so much support ---
I had to lower my meds to do many months of research on MVD - I've had to advocate for myself - and am always (pushing) cheering people on to do the same
the more you know about tn - the better your treatment : )
You take Ritalin for focus what other meds are you on I am gabapentin and am having a hard time with memory and focus I keep loosing words I know the name of something but I can not find the word very frustrating
Kc Dancer Kc said:
I was able to lower my med doses with patches - but my pain wasn't constant #2 I had/have TN 1
we are 12 in 100,000--Rare indeed!
If it were not for this site - I would have not found lidocaine / Ritalin for focus (meds made me lose IQ)
And so much support ---
I had to lower my meds to do many months of research on MVD - I've had to advocate for myself - and am always (pushing) cheering people on to do the same
the more you know about tn - the better your treatment : )
It takes time for your body to adjust. It takes 2 weeks for the Neurotin to fully kick in. After that it may take a few weeks everytime you up your meds. When my side effects hit, I got scared because I was so dizzy I could hardly walk. I then lowered the Neurotin, but I wish I hadn't. The side effects will go away or at least get better. I'm not sure about the mental side effects. I was on Neurotin, but ask about Gralise. I just changed to it. It is Neurotin but in a time release capsule. I just started taking it and really like how little it interferes with my life. Books are really great too. I read the entire book "Striking Back." Yes, you definitely have to be your own advocate. You also have all of us on here. We know what you are going through. Message me anytime if you need to talk.
I was on 900 trileptal when i begged for ritalin for focus and energy to counteract the trileptal/oxzacarbine or whatever it is - neurologist said many of his patients on epileptic meds ask for these to have better quality of life. Mine was only short term
I got the idea from THESE message boards!!!
KATTHOMPSON4 said:
You take Ritalin for focus what other meds are you on I am gabapentin and am having a hard time with memory and focus I keep loosing words I know the name of something but I can not find the word very frustrating
Kc Dancer Kc said:
I was able to lower my med doses with patches - but my pain wasn't constant #2 I had/have TN 1
we are 12 in 100,000--Rare indeed!
If it were not for this site - I would have not found lidocaine / Ritalin for focus (meds made me lose IQ)
And so much support ---
I had to lower my meds to do many months of research on MVD - I've had to advocate for myself - and am always (pushing) cheering people on to do the same
the more you know about tn - the better your treatment : )
the best drs that i had were dr aurora pajeau ( she never gave up and listened and researched until she found the problem and solutions and referred me to dr fukushima) and dr fukushima i had them when i lived in NC. the problem is that now i live in SC and those drs are too far away now. i have never been able to find any other like them although my current neurosurgeon dr. takacs at MUSC in SC is very simular to dr fukushima.
I had MVD. You have to do what is best for you and your age. I love my team of doctors. Look at everything for you. It’s a shame that you have to be own advocate. My doctors are always there for me.