I have been going to the same neurologist for approx 6 years. Everytime I go to him I can pretty much count that he will change my meds. This last time I went to him, i explained to him how my legs buckled out from under me twice which landed me on the kitchen floor. The last time I had my daughter help me back to my bed. I also explained to him that I have been having break thru pain. So he changed my meds from tileptal to topamax. The next morning I was in killer pain with my TN. Soa around 1:00 pm I stopped the topamax and took my trileptal like I was taking before and it helped. This was a Friday. The Dr. office called me back on Tuesday and told me to stop taking the trileptal and continue with topamax. by that time I was very upset with my dr. and said ok thank you. In my mind I had already fired him and found another one. Did I do right?
You really need to see a neurosurgeon even for treatment without surgery. I had 2 neurologist who said I did not have TN, but my neurosurgeon confirmed my fears.
Neurosurgeons are more familiar with TN.
He is the third specialist that I saw.
Although, 2 internist said I had TN (type 2) before the neurologists said I didn’t have it.
You will find it is very rare that any doctor has treated this problem. They are learning like us.
I’m not sure if you made the right decision or not but I do feel like you should do what’s best for you. I am kind of unhappy with my neurologist and my pain management team as well. I am still having pain every day and the only thing that my doctors have changed is the gabapentin to lyrica so now I am taking trileptal 600 twice a day, baclofen 10 at night, amitripyline 50 at night, and lyrica 100 3 times a day. The medicine does make the pain a little less severe than it was but I still have attacks every day. The attacks only last about 30 minutes but during that time I am begging for relief. I just don’t think my doctors are doing enough for my pain management but they keep saying they want to wait on the surgery and manage with meds for a while. It’s really frustrating and I have considered changing doctors but if the new doctors follow the same routine it will be a waste of time and then I’ll have to get familiar with a new team so I am just weighing my options right now. So if you feel that you will have better results from a new team of doctors then you might benefit from changing.
I would love to but the dr. I have just fired refused to refer me to one and my insurance makes me get a referral no matter what… maybe this new one will
Do you have an internist or family doctor? That is who referred me after seeing 2 neurologists.
@tiredofthepain I just need to say I’ve felt this leg bucking feeling as well but not enough that I fall. Same thing going on with the strength in my hands. I was curling my hair and my hand just stopped working and I almost burned my face! Wasn’t sure if I should bring this up to dr. Also the fact I as well am getting break through pain. I just don’t feel I can handle one more milligram of one more med! And MVD is in 22 days. Do I see how long I last with the pain and the symptoms? Ughhh
I went to the new neurologist. He listened to me and I asked if I could
take 1 of my trileptal around lunch (which is when I have the breakthrough
pain) He said by all .eans. Then he nailed my situation on the head. I’m
not gonna go much into the details but the other problem I have is called
psuedo sizures. It is not epilepsy but it is awful. He looked me straight
in the eye and said people who suffer from psuedo seizures are rape and
abuse . I said yes. He then said tm pain are stress related. With
everything going on in this cruel world I don’t know who would be under
stress. But anyway I thank everyone