This all started a couple of days after thanksgiving. I felt what was the worst head pain I have ever experienced. Two long weeks short I ended up in the emercency room 3 times and none of themedication I received helped. I was developing anxiety over my condition and really scared about way it might be. I visited eye doctor and wanted to rule out temporal arteritis because I have had some eye pain with this dreaded issue. Arteritis was ruled out and I ended up in a neurologist office. She suspected occipital neuralgia and she administered a occipitsl nerve block which helped none I had my doubts with this diagnosis because I then visited a second neurologist and she said this was some type of neuralgia and gave me gabapentin and a steroid packs jay started with 6 pills on first day and went down from there for a full week. It was amazing. I had my first relief in over 3 weeks. Then however. The steroid pack ran out and the gabapentin did well for about another week and unfortunately my pain returned. This time to no avail was the gabapentin. Just yesterday my neurologist finally diagnosed trigeminal neuralgia. My pain can be described as troublesome, almost always constant dull pain however becomes very bad at times no pain in my face just feel like a tingling numbneds in my cheek from time to time nearly all the pain I have is in my head and the only reason I didn’t suspect this disease is because I didn’t know part of the trigeminal nerve does actually extend into your head and even somewhat higher. I have been prescribed tegretol and will start it today when I pick it up. What can I expect and will it help more than the gabapentin? I am 21 years old with a long life to live and scared to death of this. Please do help
I am on triliptical for the pain and nortripiline st night for the depression and anxiety. I was recently diagnosed was in excruciating pain for months before I was diagnosed. I sometimes have electric shocks at the gum, and sometimes it can be frustrating. I will have pain and burning during the day and it will calm down at night. Have you seen a neurologist or a pain management doctor.? I hope all goes well, hang in there.
Yes. My neurologist is the one who prescribed me the tegretol. Hoping it works. I have been very torn up over all of this simply because it took so long to get an answer as to why I was in so much pain and what was causing it. All of my pain is actually in my head/ scalp, but only on my left side. Ranging from the top of my head to even sometimes in the sides above the ear and towards to front close to the temple. I’m starting tegretol today after already being on gabapentin to with succes at first but it only lasted 2 weeks. I am hoping for true success with tegretol. Please anyone who has taken this medication post and tell me results with it
I started Tegretol yesterday afternoon. It seems to be working immediately for me. My GP is under the impression that it should work fairly quickly. Playing with the dosage is a must as well, start low, work your way up as needed, then after a few months wean yourself off. By then whatever nerve(s) may be inflamed, convulsing or misfiring pain signals should have calmed down and have had a break for a while. This is what my GP shared with me. He also said you would perhaps need to play with other meds, such as a combination of Tegretol and Gabapentin if the pain continues. I am in such early stages it is hard to tell if the meds are working or if I am not having shocks, but I think it is working because I've hit my eyebrow with my glasses (one of my pain triggers) and touched my forehead and talked for hours (more triggers for my pain) and nothing. I feel drowsy and a bit off centered, but otherwise I feel okay. I also got to play with my kiddo today, she's 4 and busy! The shocks stopped all day today. I am also taking Advil with it,which is probably like chewing on M&Ms and unnecessary. I also am taking amoxicilin for a sinus infection. Hang in there, you'll find what works for you soon, you are being very proactive and have joined a very welcoming group. Take a look at all the info on the black tabs, it really is helpful.
Just keep in mind that it takes a couple of weeks for Tegretol or Trileptal to build up in your system...to reach it's full therapeutic dose. If you still aren't seeing much difference, you may need to contact your doctor and see if you need to increase your dosage, depending on where your at...Best wishes to you, I hope you get to feeling better Soon!! Min
hi hillsdale15. i am so sorry you are having so much pain. pain is so debilitating. have you read the book Striking Back? it is a must read when you have TN. it talks about symptoms, meds and their uses and side effects, surgical options and shares some stories. the med section is very comprehensive and it sounds like you could benefit from this section alone. knowledge is power or rather potential pain relief. many docs do not have experience with tn so if you can educate yourself it will help. often meds are piggy-backed meaning you take two at a time. i take carbamazepine(tegretol) and baclofen. also see if your med comes in slow release to avoid the highs and lows. i hope you get some relief my friend.
Thank you so much. I just took my first ever 200 mg dose about 30 minutes ago and obviously I haven’t felt any different yet. I figured it would take days if not weeks to get into my blood system and for it to start working. My neurologist has said that within 2-3 days if I am not seeing much relief to increase my dosage.
Hi Patty and thank you for replying and it has been a battle for some time now. I understand that sometimes it does take two medications for some people but for now my neurologist has given me just the one.
hillsdale15 said:
Thank you so much. I just took my first ever 200 mg dose about 30 minutes ago and obviously I haven’t felt any different yet. I figured it would take days if not weeks to get into my blood system and for it to start working. My neurologist has said that within 2-3 days if I am not seeing much relief to increase my dosage.
Finding the right medications is a trial and error. Tegrotal did not work for me. Gabapentin alone does not work for me. I needed tegretol, gabapentin and Oxy the first time around. I went into remission for two years and now it is back and not responding to that combo this time. Finding the right med or med combo is a trial and error method.
hi! im erin and im new here as well but I have had atypical tn for 23 yrs after a dentist applied sudden heavy downward pressure while he was drilling-enough to tear cartilage. the hmo was only good for a splint which triggered nerve pain and drugs-some of which caused me to nearly faint. my disc was dislocated and I have had some lock for 23 yrs.anyway, I have had a lot of pain and anxiety with this mess and no help...until I found out about homeopathy! I still have smaller bouts of discomfort but I can still function and if it bothers me much I can calm it down fairly quickly. through 1 800 [ed] I take spigelia [ed] and staphysagria [ed] -you can get 160 pellets for under 10 dollars-[edited]. homeopathy says it does not interact with other meds or have side effects. it works differently from narcotics etc-slower but deeper because its telling your body to heal itself-kind of nano tech really.its been a god send to me-I am much better than I was! also benfotiamine is a synthetic b1 created in japan in the 1950s for diabetics -helps diabetic neuropathy and app. a case of tn. can get 160mg at [company name removed] for 7.00. I hope this helps and I hope you get relief soon!