Good Morning...I am new to this site, but not to TN. I have been suffering with TN1-TN2 on the left side of my face for 2 years and as everyone says, it does get worse. In 2010, I had an acoustic neuroma tumor removed and that may be the cause since the tumor was compressed on the brain stem. I have tried numerous medications, but because I worked full time, the side effects were brutal and had to keep switching. I still haven't found a cocktail that works. The debilitating, severe, episodes have been more frequent, so I decided to have Gamma Knife Surgery at the end of January. According to my doctor, it could take up to 6 months to see any results, but I should be seeing some relief now, the 3 month mark......I'm not. I had such an episode, I ended up in the hospital for 5 days, I truly don't think they knew what to do for me. Relief finally came, although the short sparks still break thru. I was sent home on another cocktail...which brings me to my question. I am feeling confused about when and how often I should take these.....Tegratol 800 mg daily - 200 mg capsules extended relief (2x daily)
Dilanten 300 mg daily - 100 mg capsules extended relief (2x daily)
Lamectal 300 mg daily - 150 mg capsules
I just feel confused because my worse time of sparks are in the morning. I am on a early schedule with these and the last doses are around 7:30 pm. I am calling my pharmacist after this. I am very comfortable with my neurologist but I just feel I need more direction with these meds. If I had one thing to complain about, beside the pain of TN of course, is that there should be more, thorough education on how to use these. Any feedback would be appreciated...Thanks
Hi Kathleen Anna- I am so sorry for all your discomfort. I agree the most frustrating thing is finding the right cocktail. if you like your neurologist and trust him/her then keep working at it. you will probably have to keep tweaking the meds, keep a journal on how you feel if you aren't already, it has helped me and I start to see triggers, and commonalities which is useful for both myself and my neurologist.
I am in a similar situation now- I opted for MVD surgery since I was young (53) and the success rate is so great. I unfortunately was not as lucky- my surgery was successful but TN2 kicked into high gear and I am now 5 weeks post surgery and can not go 6 hours without oxycodone- the pain attacks are so debilitating I go crazy.
I cant even think about going back to work yet, my mind is scattered, my eyesight and hearing have been affected and I have been told I am "unchartered waters" in other words we need to keep looking and trying different things. I see my neurologist today and we will discuss new types of meds. I am so scared about staying on steroids and opiods. I am familiar with some of your meds I have had success with Dilantin and tegratol but never tried lamectal. It can be a lot of meds but I think they need to keep building up your doses for optimal use.
Good luck but don't give up. I wake everyday reminding myself that its a new day and attitude is 1/2 my battle- if I don't have a good attitude I can be sucked into that terrible world of pain even more. do something everyday that makes you happy. I give myself that gift. today I am going to lunch with my husband- we have not spent five joyful minutes being together since my surgery - so 1 hour I will think of him and my beautiful life outside of TN.
I hope you have a good day. Kathy aka east end lady
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