So here's the plan. I am going to have a consultation with a neurosurgeon, Dr C. We are going to discuss the benefits of microvascular decompression. I am not even sure what it's entirely all about so I am going to research a bit and go in with a positive attitude. In the meantime, Dr B has me on an added medication, Topamax. He hopes this will help with at least some of the attacks.
Tuesday, July 21, 2009
I went to see Dr B today. He is an empathetic man. He seems to know the trials and tribulations. We talked about my options since the Tegretol and Neurontin are no longer working. He actually said he didn't feel the Gamma Knife procedure to be the best move. He thinks the potential side effects and cons way outweighed the pros. We discussed medication. As of now, I am on the best medication to treat trigeminal neuralgia, however there are other meds that can be thrown in the ring on top of the two I am taking. There is also MVD. I am scared to death of invasive surgery. But as Dr B points out, I do want to have a life and TN is taking away my ability to function. I personally don't really want to play around with meds right now to try and find the best mix. My husband is missing work for me, other people are taking care of my kids, and I had to miss part of DH's cousin's wedding. I wouldn't be able to hold a job with this. Someday I do want another child and I don't want to be on several medications.
Sunday, July 19, 2009
I am sitting here trying to think of what to say. Where do I start now? I am completely screwed up. I seriously cannot function on these meds, AND they are only helping the pain for a little while. If I take a normal dose, the burning is still there and I get a few 4.0 shocks. If I take a double dose, the burning subsides for a bit, as well as the jabs, but I either become a zombie or a drunk Chatty Cathy. Either one is terrible. I think if I only double dose once a day and take the rest as perscribed, I am more zombie like. Double dosing all day long makes me the chatty one.
Now, the big deal for me. I am having 10.0 attacks about 4 times a day. Then I get the little 4.0-7.0 after shocks here and there. I am devoted to my ice packs to help distract from the pain. My husband's family had a reunion this weekend. On Friday morning, I spent it in bed with bad attacks. Then throughout the day I had the little ones; tolerable attacks. Nightime brought back the bad ones and we had to go home. Saturday his cousin got married. I spent some of the reception crying my eyes out in the car because of a huge attack. Sunday has been the same.
Side effects: Extreme ticks/jerks. They are getting worse although I have been taking the same extreme doses for the last 5 days. Double vision, extreme fatigue, drunk feeling. The thing that bothers me the most are the jerks in my hands and fingers. My hands, arms, legs, and feet will also go numb. It's mostly in my fingers, hands, and toes. Then next my lower legs, then my arms.
And guess what? The pain still comes back. I am scared that if I lower the dosage the pain will be worse than it already is now. I am going to my neuro on Tuesday. I have also contacted Gamma Knife of Spokane for a consultation.
Will provide more news when it comes.
Tuesday, July 14, 2009
For the past week the attacks have been coming back. They are exactly like the ones I had last winter. Awhile back, Dr B said I could up my dosages depending on the pain. Well depending on the pain, I have upped them anywhere to one extra dose a day to three extra doses; mostly taking those extra doses during attacks. I'm not sure if it's helping much or if I need to give my body more time to adjust to them. The attacks take up at least half of my waking hours right now. And when I am not in pain, the side effects are horrendous. I feel drunk, dizzing, and extremely exhausted. I just got through a 30 min attack after lightly brushing my teeth. Eating is a trigger too.
I knew they were on their way back in when I took a drink of juice last week. I had tons of pain in my top row of teeth. It went away quickly but I knew the worst was on it's way. Here I am today, feeling drunk and disoriented. I can barely function. I have probably taken more meds than I should but the pain is intolerable. Right now I choose drunk over suicidal but I am sure there has to be a better way to handle this pain. Either the meds need changing or adjusted or the TN is just out of remission.
A call to Dr B will be taking place after their lunch hour ends in five minutes