... but am not getting much relief plus I seem to have a lot of symptoms not associated with this illness like chest pain and tinnitus. Has anyone experienced these aswell?
Tinnitus is a symptom of trigeminal neuralgia. Could the chest pain be due to stress? If you are having chest pain you should go to the ER to have it checked it out to be sure you are not having a heart problem.
I had TN for 5 years. I had better results with Topamax with Baclofen than Tegretol. I think they put me on everything from gabapentin to carbamazepine to the above and several others. Another TN symptom I had was lots of vertigo. The Epley maneuver was a lifesaver. Most medications just put on massive amounts of weight, made me extremely tired and made it very hard to think. I actually lost weight on Topamax and could think more clearly on it. But frankly nothing ever worked and when the TN was every few seconds I finally found a great neurosurgeon at the University of Utah, named Dr. House (not kidding, lol) and he took the blood vessel off the nerve and I have been pain free ever since! Wonderful. But it took a long time and trying everything before my insurance would approve the surgery. So good luck to you! I hope you find answers.
You should watch your BP.
Pain usually increases BP. Anxiety delving around the unanswered questions can also influence your readings.
Are you seeing a Neurologist? Tegretol saved my life! It's the only thing keeping me from killing myself. Well, that and Dilaudid (I got a referral from my primary care doctor for a Pain Management Dr & those pain pills pick up where Tegretol leaves off... Might be what you need too). Also, ask your doctor to "up" your dose and add Baclofen to your routine. That's what my problem was at first too. They have to play around with it at first to customize your treatment. If they keep increasing your dose and you still find no relief, you may want to consider switching to Gabapentin. It's also an AMAZING drug for nerve related issues like ours. Also, you might want to look into how these meds affect ppl with TN1 or TN2 (Atypical Trigeminal Neuralgia). My Rx is Tegretol, Baclofen, & as many Dilaudid as law allows (which is about 2 4mg pills per day)...
although pain management won't immediately start you on it, unfortunately. It takes a couple months for them to work their way up to the good stuff. Hope this helps. I'll keep you in my prayers. Nobody should have to endure what we do. ✌️❤️
When I was first diagnosed I was put on Tegretol but within 4 days had severe bone marrow suppression but my symptoms tempered and my back pain improved for those 4 days. I have tried it all but... I take acyclovir every day and a muscle relaxer at night. The good news is that TN does not cause any symptoms when I sleep. . I had 6 years without a major flare up and then After a dental implant surgery the nerve has gone crazy. It is an awful diagnoses and it isn’t always because of a vessel on the nerve. Hang in there and there are some new treatments out there. Get to a neurologist that specializes in TN
- Tegretol Information for Consumers
- Tegretol Information for Healthcare Professionals (includes dosage details)
- Side Effects of Tegretol (detailed)
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