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Tegretol ...now possible surgery

Posted , 5 users are following.

Ilena
Ilena

Hello,

I'm 31, and was diagnosed about a month ago now with TN. I've been taking the Tegretol for about the same amount  of time... I went to the ER because I woke up feeling like I'd been hit in the head with a rock cave man style and the pain spread from there out into my cheekbone lower jaw and behind my brow bone ( left side) . 

Anyhow, I wanted to respond because my doc and my research says that the Tegretol is the one drug that actually works. From what I've read, even on here, people who start on other drug switch over to Tegretol because it's way more effective. The only thing that concerns me is if I need it long term, eventually capping out of the dosage - 

Personally it has reduced but not yet eliminated my pain ( please note it take 3 weeks to get into your system good) also my doc has me on a second nerve med called Bacc- something I'm sorry I don't have my bag of meds with me here - 

I'm also on Norco ( pain relief ) and ibuprofen ( for nerve inflammation )  currently at 200mg/ 2x  a day of the Teg. I started out at 100mg/ 2x a day. My doc just doubled it after my first month. We are starting slow to try to achieve the right dosage for my body- 

The first week I had to stay home because of the pain.  I prob should have stay a second week but I'm pretty active so being home and thinking about it constantly was emotionally draining and made me sad quite frankly. 

I've given birth and this def matched that pain if not exceeded it. 

 Back to work now but I have to wear silicone ear plugs to dampen the noise volume as that is a trigger for the pain to intensify. I'm also extremely senstive to light so I have to wear those super protective glasses that won't allow light in. 

I actually have heat flashes / hot flashes when then pain spikes. It's my body's way of responding to the stress of the pain- 

I use ice packs ( one on the back of my neck works really well during a flash to soothe and comfort me ) and my mom says it works if you do the same on the bottom of your foot.  

Anyhow, I had an MRI Friday & learned there is something ( perhaps a lesion they haven't defined it yet ) in the lower center deep part of my brain causing this. I dont need immediate surgery but it is a possibility. 

Has anyone had a similar experience? 

 

0 likes, 11 replies

11 Replies

  • eddie13
    eddie13 Ilena

    Posted

    Llena,

    I also have lesions. Tegretol is effective. I hear it is less effective for those with compression. I started at low dose like you. Now 8 years later, I need a 200 mg every 6 hours. Feeling tired is my only side effect. Don't worry too much about getting on the dose you need.

    eddie13

    • Ilena
      Ilena eddie13

      Posted

      Thank you Eddie,

      I really appreciate you responding because the more I can understand about the possibilities with TN, the better my outlook. I've really been making an effort to stay in prayer and be positive about it- but there's something about surgery that really makes me pause you know ?

      So thank you again for sharing about your lesions and being able to effectively be treated with the Tegretol (=

  • monica5119
    monica5119 Ilena

    Posted

    Hi. I am so sorry you have been struck with TN. I care for my 12 year old daughter who has had TN for 1 1/2 years. Due to her age most drugs did not work well. The drug you are unsure of might be Baclofen. That is one drug that does work for my daughter.

    When she was first diagnosed extensive MRI/MRA studies were done of her head. An apex leison was discovered. We had to travel 4 hours away to see a neurolotologist (someone who works with the nerves around the ear and in the head). This doctor explained in her case it qualified as a, "Leave me alone lesion." I had 3 doctors confirm that the type of lesion my daughter has (or had) is common and goes away. We simply don't look that deep in the brain very often.

    It could be completely different than your experience. The apex is located at the base of the brain and the trigeminal nerve brances off to both sides, wraps around the ear, and into the face.

    Despite all the struggle and pain, perhaps your finding are same. We so desperatley want a definate answer for why TN happens. We want a quick fix (TN has had a crushing effect upon my entire family).

    I humble offer that if surgery to the base of your brain is suggested, a second opinion would be an excellent idea. There are drawbacks to surgery, as with any protocol.

    I pray you find peace of soul,

    m

    • Ilena
      Ilena monica5119

      Posted

      Hi Monica,

      Thank you so much for responding -

      Bless your daughters heart. I have a 9 year old daughter - she has been watching my every move since this all began.

      The leave me alone lesion in the back of her brain sounds like it could be in the same spot as mine. In the lower center depth of my brain. The doc has not given me answers yet- he says it has gone up to the second teir of neurology - so I'm waiting.

      I too hope that we find a way to eliminate TN from all lives. It doesn't seem to exclude any age or background from what I've found. I wonder if there is a common factor in us all -

      More than anything I'm praying that I'll be able to resume my life. I sleep more than usual now and my life seems to be at a bit of a halt. I'm hoping by summer the meds will be effective so that it doesn't hinder me giving my daughter the summer we've planned. And hopefully surgery will not be needed at all. I will def get a second opinion before I let them operate -

      Thank you again Monica for giving me another level of hope through your own experience with your daughters TN

      May God Bless You & Your Daughter,

      -Lena

    • Ilena
      Ilena

      Posted

      Oh and yes the Bac- med is the same one as I'm taking. It was introduced as a support med to the Tegretol
  • caryl33332
    caryl33332 Ilena

    Posted

    It sounds like you have something in addition to trigeminal neuralgia going on.  What do the doctors say about this lesion?
    • Ilena
      Ilena caryl33332

      Posted

      Hi Caryl,

      Thank you for your response -

      It's quite possible however my doc says that the possible lesion ( it still has not been officially named ) is supposedly the cause of the TN

      I'm at a bit of a stand still waiting to get more info from the neurological team -

  • Valkyrie
    Valkyrie Ilena

    Posted

    There is surgery or there are other means of dealing with a lesion.

    I am currently looking into Gamma Knife as i have been deemed unsuitable for MVD surgery due to other factors which make it too risky.

     Deep brain surgery such as is being suggested to you is a bit of a woryy.  Is Gamma Knife an option for you i wonder?

    • Ilena
      Ilena Valkyrie

      Posted

      Hey Valkyrie,

      Thank you for responding (=

      I've read just a bit about the gamma knife. Do you know if that would fall under the destructive surgery ( where they are damaging the nerve for pain relief ?

  • Valkyrie
    Valkyrie Ilena

    Posted

    I mention Gamma Knife because its primary use is for Brain tumours although it can be used for other things like TN.

    The best part for me is that 2 or even more lesions can be treated at the same time. As well as TN from a couple of pesky blood vessels in the wrong place i have 2 benign lesions which are slow growing but have found a way to press on the trigeminal nerve. I am thinking they can do all 3 at the same time if i am lucky.

    Although it has risks, like everything else associated with this condition, i like them better than actual surgery myself.

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