After 9 days of very little/interrupted sleep and considerable nerve pain, I am throwing in the towel on that evil drug. Usually I could at least fall asleep for 3 hours before waking in pain but last night I lay in bed for hours with my nerves jumping and driving me crazy. The doctor mentioned I might feel a little tingling. I am so frustrated and don't even want to go back to that doctor now. This is the worst I have felt in a long time. I left a message on their answering service at 3 am while I was trying to fall asleep. Figured I'd let them know how unhappy I was, lol. Told them not to bother trying to talk me into staying on it again that I'd rather be fat on gabapentin.
Topomax ain’t for everyone!
But
What about a smaller dose, different time of day,
Call pharmacist and ask questions… Not doctor
I tried two anti-sez meds and I will swear they made me worse then I was. I have TN2 so the better answer for me was a tricylic anti depressant. I now take 75 mg a day of nortriptyline and it has saved my life from all the scary awful pains. Please feel free to write me if you have any questions.
Heyy so I went to look at what type of pain you have after I answered ur question you have type 2 pain so I would def try a tricylic anti dep. if I were you vs the anti sez meds. And I also saw you are from winter park I am from Orlando too!!
Gabapentin has worked very well for me in the past. Actually, I was okay with it except that I gained quite a bit of weight since the dosage increase which is why my new neuro tried topomax. After this experience, I don't want to try anything new!! It was the worst 9 days. I'm not sure if it is because he took me down too quickly off the gabapentin?
jstagrl, I will talk to my gp in a couple of weeks when I do my follow up with her. She just started me on viilyd (sp?). If the tricylic antidepressants make you gain weight I doubt she will go that route for obvious reasons. I think she might have mentioned either amitryptiline or nortriptyline...but went with viilyd.
Too cool that you are in Orlando, too!!
Are you just on the nortriptyline? Is that enough alone to deal with the pain?
jstagrl29 said:
I tried two anti-sez meds and I will swear they made me worse then I was. I have TN2 so the better answer for me was a tricylic anti depressant. I now take 75 mg a day of nortriptyline and it has saved my life from all the scary awful pains. Please feel free to write me if you have any questions.
Hi,
I was on Toprimate for three and a half years and while I found it somewhat effective, I had multiple side-effects. The medication causes kidney stones and three different times, I had kidney stones. Also, the cognitive impairment has really hard. Being in school and trying to succeed was nearly impossible. I didn’t have the sleeping problems you are having as I had the opposite problem and would sleep until 9 in the morning and at 12 pm take a nap for 2 to 3 hours. I was on Toprimate along with Trileptal and Clonidine patch. My doctor took me off Toprimate and put me on Lamictal. Lamictal was game changer as it was the first time since I had TN that I could actually live with this disease without severe pain. Sadly, I starting having complications at 400 mg and dropped to 300 mg, but the pain relief wasn’t nearly as good.
Hope you are able to find something that helps
^^Ouch Beth, kidney stones has to be awful when your face is hurting as well.
If you have type 2 the tricyclics can be amazing.
For type 2 daily I take 150mg nortriptyline, 300mg effexor, 40mg oxycontin and several joints, and it still sucks, but it's the best combo I've found for me and type 2. I just switched to effexor from 120mg cymbalta and feel like it helps more but not sure for how long.
The first drugs I tried were gabapentin (2700mg) which made me a zombie. I tried Oxcarbazapine up to 1200mg which gave me the electrical type tn pain and felt like my teeth were being crushed in a vice.
I had an MVD which helped for 8 weeks.
It has been 6 months since the experiment with topomax and I have been having problems with painful tingling, strange nerve feelings all over my body. They are not 24/7 thankfully, but often wake me saying "hellllllooo there!"
Thanks for making me laugh... I used to be skinny on topomax and now I'm fat on Gabapentin! I did okay on Topomax. In fact, I long for those pain-free skinny days. To say that everyone responds differently to the meds is as big an understatement as saying everyone recovers differently from an MVD. Therein lies the continual frustration we all face.
I hope you find something that works better for you. I have an MVD tentatively scheduled for Oct. 15, so now embarking on a new path of uncertainty. I just hope I get to be skinny again -- at least for a little while. Sigh...
Hi
Please have a talk with your doctor ! I know your frustrated… Neverthelo ess there are so many options. The standard med that is go to is Tegritol perhaps that is an option. Also lyrica is very effective for others please regroup and seek out options. Were here for you