I am extremely lucky to be seeing professor Zac in great ormond street for my atypical pain. she has prescribed gabapentine to replace my existing tegretol. She suggests I reduce first until the tegretol is out of my system but I cannot get below 400mg a day. At that level my pain is just about bearable. As u can imagine getting additional appointments is nigh on impossible as she is in great demand! Does anyone have experience of changing these drugs. Can you offer advice? I am terrified of breakthrough pain as I although I am never pain free I remember only too well how much worse it can be.
Hi floss61,
I’m not sure why she would want you to get off all your Tegretol ( carbamazepine) before starting the Gabapentin ( neurontin). Does she not realize how much TN pain hurts with no meds at all???
If it were me, I would call the office and ask for the rx of Gabapentin and the dosing schedule on how to slowly increase, and advise them that you can’t wean off the Tegretol completely until you have some Gabapentin in your system due to the high pain.
Mimi
Thanks mimi pretty much doing that I have started on the first weeks schedule.
I had got down to quite a low dose of tegretol and I think she was hoping I could live with the pain level so would not have both drugs in my system. Also she feels that the duloxetine is my most effective treatment an that is not changing. Feel a little bit shaky …not great when teaching! But am persevering and will stop tegretol in a couple of weeks. I think you are right and that I should ave a reduction schedule for tegretol as well as the increasing one I have been given for gabapentin. Thanks for advice, it is so good to know others understand… Incidentally I have been told that my atypical pain may be with me for life as she believes that the dental injury I received at the start of this nightmare has permanently damaged the nerve, therefore not a candidate for surgery or any permanent solution. Wondering if anyone else has a similar prognosis ?
Hi there - the past month has been extremely interesting, if not frightening. When I first started with the face pain, I went to 3 dentists and one thought a molar's root was cracked and causing the pain - so I had a perfectly good molar pulled for nothing. Was diagnosed in 2010 and on tegretol for several months and then it quit working. Went to a neurosurgeon at AGH in Pittsburgh and after being on gabapentin for several months with no success, I had a glycol injection - then I had a MVD in July, 2011 and the pain never really went away, although I did experience 3-4 months of mild to little pain. I have been on gabapentine 2400 mg (600mg 4x a day).Then it came back. With a vengeance. Several times. At one point, my doctor prescribed a steroid pack and after about 7-10 days after completing the steroids, the pain subsided, never went away, just subsided. This past August, I had another chronic attack and was prescribed more steroids. They did not help. -- So I called the doctor and he gave me a prescription for Dilaudid - 4 MG and told me to take that until the pain let up and call him for an appointment to discuss a nerve section.
I had to drive 45 miles (my friend drove, I was in too much pain to drive) to get the actual prescription and searched 3 pharmacies to find one that had the Dilaudid 4 MG. I took the first pill and within 45 minutes I was having severe - and I'm not kidding - SEVERE - pains in my stomach - not in my gut, but in my stomach. I called the doctor who prescribed the medicine and the doctor on call said to go to the emergency room. I was in too much pain to drive myself or even trust a neighbor to take me, I wasn't sure what was going on?? So I called an ambulance and was rushed to the hospital. The doctor in the ER said I had pancreatitis. Bottom line: the 4 MG of Dilaudid caused the Oddi sphincter to spasm forcing the bile in my pancreas and liver to back up. I stayed in the hospital for 3 days and was on a clear diet.
In the meantime, a friend contacted a friend to called a neurosurgeon at UPMC in Pittsburgh and he called me at the hospital within 12 hours. I went to see him and had an MRI and he put me on Tegretol (started me off at 100 mg 3x a day along with the gabapentin and since then I've had little pain. After a follow up visit, the surgeon said he would recommend staying on both meds as long as they are helping me and then go in for a repeat glycol injection. He had success with that for many of his patients, saying they are pain-free for up to 2 years.
I had a glycol injection before my MVD by another doctor and it did not help at all, if anything it made the pain worse.
I am at my wit's end and for now, will stay on the meds.
Needless to say, I have written off the doctor who prescribed the Dilaudid. 4MG of that drug is way too high for a petite lady like myself. That drug is stronger than morphine and I refuse to be on such a potent drug. I'll go thru another MVD first.
There is hope, perhaps. The new neurosurgeon said there is a possibility of a new technique being studied that will recover the trigeminal nerve's mylin sheath (I may have this all wrong), but he said, certainly in my lifetime, and maybe in 3-4 years. I hope I can get through to 3-4 years and I told him I'll be first in line for this procedure.
No one knows what we go through. My heart goes out to all of us - and especially to those who are never pain free.
What I can't understand is why the first neurosurgeon threw his hands up in the air and wanted me to go through a nerve section. The new neurosurgeon said that would be the last resort for me and I am far from that.
One other thing, I find that when I am upset or stressed, my TN returns.
That's my story - God bless us all.
Oh you poor thing, we put such trust in our doctors. I hope the meds give some relief and that the new treatment is available soon. Yes stress definitely makes the pain worse things can quite literally ‘get on your nerves’. I describe my worse days as living in my face as I cannot think or focus on anything else. Fortunately those days are fewer than they used to be and understanding it all helps with coping. Thank you for responding. Floss (aka Lesley!)