I have suffered with TN for approximately 10 years. Diagnosis took extremely long as it was A-typical with constant 24/7 pain in my right ear and daily stabbing/burning pain in my right eye. After about 8 months of pain reduction with carbamazepine/tegratol and codeine it came back in January with increased symptoms. In March I had decompression surgery and a cutting of the 7th for ear pain, after which I was extremely dizzy for several months but NO pain other than surgery area. They tried everything including dramamine to overcome dizziness. Predinsone ended up being most effective short term high dose. Now the dizziness is back closer to the degree it was shortly after surgery with nausea. I also have pain returning in the surgical area and above the right eye, not in the eye as previous. Also pain just below temple area. This has been increasing in frequency. Has anyone else suffered from this type of issue since decompression surgery? I have a call back into the doctor again but am frightened to death the TN is coming back and now with dizziness.
Hi Vexner
So sorry to hear you continue to suffer, and now have new symptoms post MVD. Get to your doc as soon as possible and work on not being “scared to death”. Fear really makes all the symptoms worse and then it’s hard to sort out what’s what. I know that’s easier said than done, not making light of your situation at all. Just know from my own experience - fear being the ultimate “on” switch. Perhaps you could check out some simple breathing exercises.,sometimes it’s about getting from one moment to the next.
Keep Heart
Bellalarke