TN back again

[missyjo]

I was hoping that I would never have to say this....but I think my TN is back. I started having shocks a few days ago, but thought they would go away, But as each day comes, they are getting worse. I was hoping it was just a side effect of the baclofen that I just started taking. My neuro gave me baclofen because a few weeks ago I started to get the pre-tn symptoms again - the fluttering eye, some shocks through my eye, "crawly's" along my nose and the super sensitivity in my teeth. Now the last 3 days the shocks have started. I keep waiting for them to go away, but they don't. Today was especially bad. I am now wondering if my surgery was a failure and it didn't even work at all, and I was in a really long remission. Has anyone gotten worse after taking baclofen for TN? I was on Trileptal and Lyrica last year before my surgery and I told my neuro that I didn't want to go back on them, so he prescribed baclofen. On top of it all, the unseasonable cold and windy weather has made my occipital neuralgia really bad also. If I'm not zapping in my face, I am zappping in the back of my head!
Thanks for letting me vent, I am just so upset right now.

[macy]

Dear Missyjo,
You have every right to vent. I do not know anything about baclofen. I had always been on Tegretol and Neurontin. This past July I was put on Lyrica and Tegretol. A good combination for a few months, but now I am having shocks about an hour before each dose is due, I suspose I will have to increase it.
We all need our own drug store so we can try all the drugs. I am so tired of swalling pills. I know it could be worse.
I hope the new med will kick in soon and take care of your pain.
((((((HUGS)))))

Macy

[sheilajohn]

It is so frustrating when you think it may be over and it comes back! I have had that happen too. My son in law is a chiropractor and he has a treatment that helped my TN a lot this summer. It may be an option for you! Good Luck. Sheila

[ella138]

:eek: :eek: :eek: :eek: :eek: :eek: :eek: :eek: :eek:
I can't believe on top of having ON, the TN is rearing it's ugly head. How long has it been since your surgery? Are you sure that's what it is? A couple of months back I had the exact same shocks in the same place as I used to(but much less intense) and I was sure it was back as well, but it wasn't. I ran back to my neurosurgeon and he told be that not every shock or pain is necessarily TN. He said dont forget that the trigeminal nerve feeds your whole face and that because I am so aware of every feeling (as many of us are) I shouldn't jump to the conclusion that my TN is back. It wasn't. Apparently your TN can get hypersensitive with hormone changes and just prior to my period was when it happened. Women with TN should read this (http://www.msnbc.msn.com/id/4465789/) it's very interesting.
The same thing just happened to Kathy (bobcat) a few weeks ago. She thought it was back again too. She is seeing her neuro this week, but from what I understand it was a blip as well.
It's an absolutely horrible feeling to think this is not over after everything you've been through. I remember crying like a baby after that first zap. Not from the pain...but from the despair.
Hang in there and know we are always here for you. (((((((cyber hug)))))))

[stefanies]

So sorry you think the TN is back. Is it the same way as it was before the MVD? Like is it a different sensation at all or less?
A few weeks ago, my ATN came back full force and made me miserable for weeks. Now it is calming down. It's not gone, it is still about a 3, but it was around a 7. Maybe the cold weather kicked it up again.
Try not to get too discouraged. It may settle down again. But you may have to stay on the meds until it calms back down. I know that sucks, but it is better than being in pain. :(

[zenmomz]

MissyJo,
Hi, I am sorry you have the TN again. I have been dealing with both. I did find relief with the TN thru some Trigger point injectins to my TM joint. I also had an arthroscopic done on the right TM joint, and that did nothing. It is trully so hard to live with each day, and nobody understands unless you walk in these shoes. It's so frustrating for me because I think people around me think I just complain alot. sometimes, I just dont say anything, and have to suffer alone.
I will support you, if you want. All this started for me in 1975, so its been a really long hard path. You are doing the best you can. I have seen a few things come and go over the years, and am still looking myself. It is a real drag most of the time, but the few 'good days' are priceless. Keep looking and dont give up, MissyJo.
Lucy

[bobkat]

Hi Melissa,

Sorry to hear things are so rough for you. I just found out that my occipital nerve was also damaged during my MVD too. A few weeks ago I started getting terrible pains in my eye and it felt like someone hit me on the side of the head with a baseball bat. I was unable to wear my glasses again due to the pressure on my incision from the arm of the frames. I wore contacts for about a week until the pain and soreness subsided. I just saw my surgeon last Thursday and he told me that I have at least 6-8 more months of healing (MVD 2/7/06) and the healing process will be a little different for me since the ON also needs to heal. The one question the surgeon asked me was where the pain that was hitting my eye coming from - because it was actually coming from the back of my head over my ear and into my eye he was confident that it was my ON and not TN pain. He said if the pain was just forming in my eye he would have been more concerned.

I wish you the best - you are in thoughts and prayers.

Kathy