I have Geniculate neuralgia (GN), I guess you can call it a form of TN. I have had it for over 20 years and I was just diagnosed a few months ago. I have seen so many doctors for this devil that live in my head and finally I found a new ENT knew what it was and he sent me to a neurologist that gave me the diagnosis. And to top it off, I now have Occipital Neuralgia ON. Also for the past 5 or 6 months I have been having chronic vertigo, the doctors don’t know why because I have too much going on at once. I just wish my world would stop spinning. It is not from the medications because it started before taking them.
He put me on Tegretol (Carbmazepine) and I was allergic to it, made me itchy all over like a monkey with a flee up his butt, like when you are allergic to a pain killer and it gave me a headache and I still had bad GN/TN attacks on it and had to go to the ER. I went to the General hospital and just had a bad experience; they did not treat me well. The doctor even asked me why I hat TN; Ok I don’t want to talk about that because when he asked me why I had TN, and when I have 10+ pain and I get asked a stupid question, I get angyr and kind of told him off!
Anyway, the neurologist took me off of that and gave me Neurontin (gabapentin) that made me higher than a kite that blew away! OMG weird thoughts, walking backwards to turn around and go straight, whatever, I was out of it!
Anyway, while on the Neurontin (gabapentin), I had a major GN/TN attack. It sent me to the ER with the ear pain, 10+ and dizzy and nauseous. Earlier that day I felt an attack coming and I was dizzy (GN is TN in the ear) so I ran to the neuro’s office and he gave me Morphine to try to take the edge off and that did not work (it got worse 10+++) so I had to go to the ER that gave me Dilaudid and Toradol (I have had Toradol before for back pain, works well, no side effects) but I was allergic to the Dilaudid and I got the worlds worse itchys I scratched everything until I bled, so they gave me Benadryl, with little relief they had to give me more Benadryl with a pill of Claritin. I kept telling them I was dizzy and nauseous since I got to the ER, but they were more interested in reliving my pain that they did not give me the vomit bucket I had been asking for! LOL after the Claritin I started screaming for it and as soon as the nurse gave it to me I had the most amazing projectile vomit ever. Like the exorcist! I freaked myself out! OMG it spewed all over the room. I got it all over my legs and the floor, my husband, and it ruined new leather shoes for good; LOL and if he was not at the end of the bed it would have gone out the door. I did not know about projectile vomit, but I do now! Besides that story the Dilaudid did help the pain and my attack stopped for the most part, (sensitivity was still there) the doctor did not want to let me go until the allergic reaction stopped and it did. So I was resting still in the ER and since the attack and the allergic reaction was over I really wanted to go home. My husband asked if we could go and the doctor said “let her sleep” LOL, I popped up and told the doctor that I can sleep at home! So he let me go. The doctor and all of the nurses were in shock that I was awake and coherent enough to gut up and walk out of the ER with all the medication they pumped into me. On the way out they were all staring at me and asking if I need a wheelchair.Besides, the Neurontin (gabapentin) gave me a worse headache than the Tegretol (Carbmazepine) a strange headache! I never had Occipital Neuralgia before but I do now. I think the Neurontin (gabapentin) left me with that. The neurologist is now giving me those nerve block injections in the back of my head. I am now taking Lyrica with minimal side effects and I don’t know if it works yet. So far I have not had a major GN/TN attack while on it (only been about 3 weeks on it)
I also suffer from fibromyalgia, chronic fatigue syndrome, and a sleeping disorder. I also have GI problems IBS, spastic colon, diverticulitis, acid reflux. I have a bad case of chronic sinus that causes sinus infections and more face pain and triggers the GN/TN.
Besides those problems I have neuropathy, bursitis, arthritis, two herniated disks in the back and two in the neck and they say I have a calcium deposit in my neck; I don’t know what a calcium deposit is or does. And now we can add Vertigo, really bad to the list!
On top of that I also have ADHD. In addition to all of that suffer from anxiety and panic attacks, depression and PTSD at times. The anxiety and depression and are mostly under control and seems to have become situational.
I take Adderall for the ADHD, Xanex as needed for the anxiety and panic attacks and they are giving me Trazodone for depression and sleep disorder.