Medication is making me a ZOMBIE!

General General TN & GPN (Old Site)
1

I have Type 1 TN and the first neurologist I went to (whom I didn't like) put me on 900 mgs of Neurontin. It did nothing. When I finally got into a very "hard to get into see" Neurologist at a top University where I live, she added 400 mgs of Tegretol (200 at a time, until tolerated, but I got to 400). I never really tolerated it. I walked into walls, I fell, I tripped, I could somewhat function until my 3:00 dose of Neurontin -- that is when I fell asleep until my husband, who had to then make dinner for us, woke me for that dinner. I was so groggy I could hardly enjoy it. I would get a second wind until my 8 p.m. dose of both medications and I would fight to keep my eyes open so I would sleep at night. Our social life no longer exists, and our friends no longer call, except to see how I am feeling.

The pain began to under be control at this time. I waited until my next visit to the neurologist. She ignored my pleas about the side effects of the medicines and since the pain was everyday almost all day, she added another 900 mgs of Neurontin.

I need to interject something at this point (and by the way, I am having to backspace all the time to correct my typos because I am so drowsy). I had a bad experience once withdrawing from Neurontin. It caused me extreme anxiety. I must be the only one in the world, although when I googled it on the internet, there are others. My doctor at the time of the withdrawal said he had never seen it before, but he was very kind and patient with me We had to go down 50 mg (take out half the powder from the capsule) every 5 days. I was on 400 mgs at the time and it took about a month to get off of it. It was a nightmare and I swore I would never go on that medicine again. Ha! My current neurologist doesn't even believe me, but finally said because I suffer from anxiety, and Neurontin is sometimes used for anxiety, when I was taken off of it, the anxiety was returning.

But now that I have called her to help me withdraw from the Neurontin she acts like she never heard me tell her about this. First of all, she (no, her secretary, didn't call me back for 3 days.)

When her secretary called me back she told me to cut back by 300 mgs every day! HASN'T SHE BEEN LISTENING TO ME?????? When I told her secretary that the doctor knew I needed to cut back by 50 mg every 5 days, her secretary said that the doctor would probably never go for that because it's not scientific enough to pour that powder out -- not exact enough. I told her it worked! So what's the difference!

I'm very disappointed in the medical profession right now. 3 days to call me back? I've never in my life had a doctor not call me back in the same day before! And when I told the secretary that I had another thought - that maybe we could cut out the Tegretol, and not the Neurontin at all, she asked me what would happen when I start feeling pain? I told her it would be the same thing if we cut back on the Neurontin - only it would save me the withdrawal pain.

Now I probably won't hear from her about cutting out the Tegretol until Monday, is my guess.

If only the doctor would LISTEN, everything would be so much easier.

I just had to vent. Thank you for listening.

Barb

2

I'm so sorry you had to deal with this. I hate doctors that don't listen to you. They seem to forget who the customer is. And the front office matters, and it sounds like they aren't too helpful. A bad appt or experience with my doctor causes stress which increases the pain. I understand you're need to vent! Hopefully the doctor will call you tomorrow, not Monday. Good luck.

3

If you don't fire your doctor, and get a new one, I would consider doing research on switching out the neurontin for clonazapam (klonipin) sp sp -- I had to go and get MVD surgery because Trileptal/Neurontin/Lyrica - one at a time, made it impossible for me to go to work or construct a sensical verbal paragraph orally or written on these boards!

You are the consumer - there are many neurologists out in the world. The only way I got better was to do the opposite of what my neurol. suggested. He was going to put me on Lamictal.... I said no more pills, found a great surgeon and 2.5 months later no pain - no pills -- the more knowledge YOU have about treatments ( I read for ONE year on here before I made my decision) the more you can take control of your best interests : )

Keep us posted!

4

Just for anyone's information who may read this, I know for FACT that here in the UK we have 100mg capsules of neurontin, I guess you do in the US also. That would have made life easier and more scientific for you.It can be hard to explain to the uninitiated how these meds may effect us. A friend on vacation a couple of years ago was in hysterics because I fell asleep leaning on a fence post watching an display of predatory birds. She had never seen anyone else fall asleep standing up before!

Barby, I hope for better things for you soon.

5

Oh Barb, I am sorry to hear you are having a difficult time with the staff at the doctor's office. It reminds me of a similar time for me. The staff member has since been replaced, thank goodness. I hope things get better for you.

It is frustrating to get the right mix and the right combination. Every time I go into my doctor's office there is one receptionist who keeps telling me about TMJ. BLAH....

6

My mother was EXACTLY in the same shoes except that she was on 1100 mg of Tegretol + 200 mg Epanutin. You cannot possibly imagine how horrible it was! The side effects at that point were worse than the pain. We had to change her neurologist and go to someone else who decreased the dose to 1000 mg. He also suggested that she takes her pills 3 times a day rather than twice a day and it made a world of difference! Drowsiness was WAY less and she was able to talk and have conversations. Two weeks later he decreased another 100 mg of epanutin and she's kept progressively getting better.

So start with step one: find another neurologist immediately!

7

Thank you all for reading my long post and being so kind and understanding. Over the last few days I have had terrible break through pain and can hardly talk (my pain is in my jaw). I called her and she put me on 100 mgs. more of Tegretol which I know is going to make me more of a zombie. On Friday I went to my addiction doctor who is getting me off of a benzodiazepine and he said to stay on the Neurontin because it is the benzo that is contributing a great deal to the drowziness. He said if I just keep cutting that (which is every 3 weeks) soon I will feel better. He understood that coming off of the Neurontin was difficult.

So, now I'm going to start again! Thank goodness the kids are grown and gone and all my husband and I have is a little dog to take care of, so I can be as stupid and zomie-like as I have to be! Anything but this current pain!

Thanks to all! And good luck to all with your pain issues!!

B.

8

I had a similar problems. Doctors don’t listen. I think mine was tegretol… It’s allied something else in England. I was so exhausted, my head felt like it was in a bubble, constant headache, feeling ill. She just kept upping my dose. Eventually a fever and rash broke and I went to a different doctor who took me off it immediately. Feeling better now (though the rash feels like sunburn) but now I’m on nothing. He wanted to see if it was an infection because he is second guessing the other doctors diagnoses because I’m so young. So now I’m in so much pain.

So yeah. Doctors never listen.
Hugs