When the Emergency Department Doctor diagnosed me with TN she referred me to the Urgent Neurology Clinic at the same hospital. An appointment was to take about two weeks, I phoned today to see if I was still on their list. I was told my appointment had been transferred to another Neurologist and was for the 5th of October 2015. I was shocked; a big difference between two weeks and 7 month's. Because they didn't have the decency to let me know that they had transferred me to another doctor; I cancelled the appointment.
How long do the pills (Carbamazepine) usually work? I am terrified about having another attack. Has anyone had an attack while driving?
Yes, I have had an attack while driving. It's scary, but just slow down and/or pull off to the side if you can. In my case, the attacks last a very short time. However, they seem like an eternity at the time. The sun shining and the glare sometimes cause this for me, so sunglasses help a little. I know that feeling of anticipation of the next attack! It's always on your mind. It just never leaves. I have a brain stimulator implant from St Jude Medical that allows me to utilize many many programs that may help you with this. Ask your neurosurgeon about this. Mechanical is so much BETTER than a pile of medication!
John. Do you have a family doctor? Or if you go to a regular Ontario Health Clinic and explain that you were diagnosed with TN that he/she should be able to start you on Carbamazip
John. Sorry here is end of what I was saying. My own family doctor after seeing the report from another source started me on the Carbamazepine immediately. It was a very low dose. It took me awhile to get to a neurologist who upped the dosage to get the pain not so intense. You are the only one who knows how bad your pain is and you must insist with your doctor to get to the right people who can monitor your level of pain. I hope you do find quick relief. I know I was hesitant with driving any distance outside the city. If possible have someone accompany you in the event you feel more pain or an attack coming on
Let me know how you are doing. Chippy from Brantford Ontario
I too waited for an emergency appt. with a neurologist. I requested to see a neurologist in Toronto but was told the wait would Likely be 6 months to a year. I opted for an appointment with one where I live and now I second guess that decision. He does not seem to have the experience with TN I was hoping for. He gave me carbamazepine and sees me every 2 months to up the dose if needed. I still suffer from severe side effects (since October 2014) and he is unwilling to try anything else. I have now been waiting for a neurosurgeon appointment in Toronto since November and was told it could be up to a year. I am unable to work because the pain is not managed well and the side effects make me a hazard in the workplace.
I truly understand how you must feel. Before I needed my meds increased I would get little shocks to let me know the pain was breaking thru. Hopefully you will be able to tell when/ if you need your dose increased. I would get put back on that list as I think it’s better to wait and see the best doctor you can than settle for someone who does not have the same experience. Sometimes a phone call or fax from your family dr explaining the urgency helps as well. I wish you luck in finding the care you need sooner than later. Us Canucks need to stick together:)
John, I was prescribed Carbamazepine (3x200mg in the pm) along with Baclofen (10mg in the pm).. It took about a month but I have been pain-free for about a year. Ed