Sunday, 25 September 2016

Brain Fog

It's been a long time since I have posting anything, and I am sorry about that. I was in hospital for a week in August and I was worse coming out than I was going in. It's been tough, but some of the brain fog has been lifted. Let me explain. 

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.  

8 comments:

  1. Many surgeons operate without seeing any compression on MRI. I didn't have also compression. I had a scar tissue on the nerve and nobody knows why. Without any reason my head looked messed up like I have been in a car accident. I think you should try to speak with some other surgeon. I got rid of the stabbing pain.
    Have they offered nerve blocks or stimulators? I have read that in US they use stimulators.
    I got a new drug called nortriptyline. It is an antidepressant and has helped more than other drugs. I also take Gabamentin, amytrytaline and sometimes oxynorm. Have you tried nortriptylin?
    Doctors don't know what to do with me. I was in a hospital last week. They are discussing now what to do.

    ReplyDelete
  2. Hello Sarah,

    How are you feeling? I have just been diagnosed with TN and put on Tegretol, I am 35, I cannot imagine that this is my life from now on! I feel messed up off Tegretol and it's only been 9 days. I don't know what the hell to do.

    Shell

    ReplyDelete
    Replies
    1. Hi Shell,
      I am sorry that you are joining the TN club, because it's no fun. Tegretol is usually the first drug prescribed for TN, but it doesn't work for all of us. You will discover that no two TN sufferers experience the same pain or take the same meds. I would give the tegretol some time and if it's having a bad effect on you, suggest to your doctor that you could try a lower dose and gradually build it up in your system. Unfortunately this takes time and there lots of drugs and drug combination ls out there. Don't ever lose hope! There are some amazing support groups out there, especially on Facebook. You can talk freely and everyone knows what you are going through!
      Fingers crossed that the Tegretol helps you xx

      Delete
    2. Hi Shell,
      I am sorry that you are joining the TN club, because it's no fun. Tegretol is usually the first drug prescribed for TN, but it doesn't work for all of us. You will discover that no two TN sufferers experience the same pain or take the same meds. I would give the tegretol some time and if it's having a bad effect on you, suggest to your doctor that you could try a lower dose and gradually build it up in your system. Unfortunately this takes time and there lots of drugs and drug combination ls out there. Don't ever lose hope! There are some amazing support groups out there, especially on Facebook. You can talk freely and everyone knows what you are going through!
      Fingers crossed that the Tegretol helps you xx

      Delete
  3. my sister was just diagnosed with TN. I gave her Oreganol P73 super strength and it seems to be working, she puts on gums where hurts 3x a day...although, she hasn't even taken it internally yet but can do that also. Another thing we found to help others was Painshield. Google painshield. In my research I discovered B12 injections could help repair the nerves. One last thing we ordered from testimonials was truehope.com. Please google these things too. Hope this helps you!

    ReplyDelete
  4. my sister was just diagnosed with TN. I gave her Oreganol P73 super strength and it seems to be working, she puts on gums where hurts 3x a day...although, she hasn't even taken it internally yet but can do that also. Another thing we found to help others was Painshield. Google painshield. In my research I discovered B12 injections could help repair the nerves. One last thing we ordered from testimonials was truehope.com. Please google these things too. Hope this helps you!

    ReplyDelete
  5. my sister was just diagnosed with TN. I gave her Oreganol P73 super strength and it seems to be working, she puts on gums where hurts 3x a day...although, she hasn't even taken it internally yet but can do that also. Another thing we found to help others was Painshield. Google painshield. In my research I discovered B12 injections could help repair the nerves. One last thing we ordered from testimonials was truehope.com. Please google these things too. Hope this helps you!

    ReplyDelete
  6. my sister was just diagnosed with TN. I gave her Oreganol P73 super strength and it seems to be working, she puts on gums where hurts 3x a day...although, she hasn't even taken it internally yet but can do that also. Another thing we found to help others was Painshield. Google painshield. In my research I discovered B12 injections could help repair the nerves. One last thing we ordered from testimonials was truehope.com. Please google these things too. Hope this helps you!

    ReplyDelete