My pain had hit a new level of hell. I was so frightened, and I felt so alone. Trigeminal Neuralgia does that to us, it keeps us isolated, afraid and depressed. Anyway I digress. My GP insisted that I go to A&E, so I did, reluctantly. I hate HATE that hospital, and being away from home sucks.
I was admitted straight away, and surprisingly got a bed in a ward quickly. That was it. I was sent for NO tests, NO scans, and I got NO answers. I spent a week there. A week away from home, away from my family, my dog and my cat. I was pissed off, and I wasn't shy about letting them know.
A few days into my stay, my medication was slightly adjusted. The Tegretol was reduced and my Gabapentin was increased. The Baclofen and Amytriptaline was the same. The pain got even more intense, and I was given oxynorm and tramadol to try and control it. The opiates didn't even touch it. The new consultant saw me three times, that's all. She came to my room on the last day with a "plan." She was going to increase my Tegretol and reduce my Gabapentin. I saw red. I was being sent home with EXACTLY the same prescription I was already on! So I got mad, and I told her that she didn't have a clue how TN effected my life. I told her that she can go home, sip her wine and put her feet up at the end of the day, my name forgotten in a dusty file in her office.
After a while, she agreed to take me off tegretol and put me on topamax. She thought it would help the "Migraine" symptoms. After all, she specialised in Migraines. It's amazing how doctors can change their mind when confronted.
I practically ran out of the hospital, but was ambushed by two shrinks. They wanted a chat and gave me info and made me promise to call them. Nope, I am breaking that promise. I don't need a shrink, I need a cure. My mental health issues all stem from the hell of living in chronic pain for the past three years. I know what triggers my panic attacks, so I don't need to sit across from someone and tell them my life story. I have no problem with therapy, none at all. It is just not for me. I have tried it, and it made me worse.
So a couple of weeks on, some of the Migraine symptoms have lessened, but the TN pain remains. The intensity is the same, the burning, the shocks and the stabbing pain. I am happy that the head pressure isn't as intense and my left arm no longer goes numb. The Tegretol fog is also gone, and I feel like I have woken up from a two year sleep. Tegretol is a dirty drug, and I will never take it again. I can think clearly again, I can concentrate and I feel more like the old me. If only this TN pain could decrease.
I saw my Neurosurgeon the other day, and he is reluctant to do any more procedures just yet. He says there are no visible compression's on my MRI, and I am so young, surgery is a last resort.
So I am still in pain, but the Trigeminal Neuralgia Awareness Campaign has kept me sane. The more awareness, the better. We may finally get a cure.
Sarah,
ReplyDeleteI just logged in to search for Brain Fog and TN, and found your blog. I realize this is 4 years later, but can you tell me how you are doing now? Did you ever receive any treatment? MVD or Gamma Knife? I had both, first the MVD which helped a little, then about 2 years later the pain was enough for me to try the Gamma Knife radiation. Here I am 7 months later and I still feel the TN flairs daily, but without most of the pain. Mostly I feel pressure and for some odd reason brain fog. So, that's what prompted me to do a search. I am also still taking gabapentin but only minimal dosages every day.
I sincerely hope you are doing better. No one knows except those who have this dreadful ailment.
Robert
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