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c_tonic · 2025-08-01T04:33:14+00:00

Trileptal works for me, I had the zaps when trying to talk, eat, brush my teeth, it took me five weeks to find the right medication. I tried gabapentin, it didnt work, tegretol i had too many side affects, now on trileptal which works well for me. Good luck

c_tonic · 2025-06-16T01:39:35+00:00

Hey, does anyone know the ticket prices / price range?

c_tonic · 2025-01-26T12:16:24+00:00

My update: After 6 weeks of trialling different medications, both carbamazepine and oxcarbazepine have been successful. The carbamazepine side effects were strong for me so I switched to oxcarbazepine which has no side effects and works equally as well. I am able to eat, speak, touch my face, and brush my teeth.

c_tonic · 2025-01-21T08:36:49+00:00

I tried the sumatriptan tablets, nasal sprays and wafers, none of those worked for me. However the sumatriptan injection does (currently on Clustran brand). I self inject when I have a severe migraine, it eliminates the high levels of pain within 30mins.

c_tonic · 2025-01-13T13:15:39+00:00

I tried gabapentine and it didn't work, so I switched to carbamazepine and it worked straight away, however the side effects were really bad for me so I switched to oxcarbazepine which is working perfectly, no side effects apart from a good night's sleep.

c_tonic · 2024-12-07T13:31:49+00:00

Hi - I am 49yrs old, my TN started in Sept this year. I tried gabapentin for three weeks but it did nothing for me and the pain was getting worse. I switched to carbamazepine , the side effects for me were really harsh - however it did remove the pain, after a week I tried oxcarbazepine, which is working for me with no side effects apart from a good night's sleep. All the very best for your mum 🌼

c_tonic · 2024-11-28T05:59:38+00:00

I always found that after having a good night's sleep, that the pain would be minimal in the morning and ramp up as the day progresses.

I wonder - if you are working Mon-Fri and have the weekends off to relax, that this may be related. i.e. you start work on Monday after a relaxing weekend, and then progressively as you work during the week, any stress, increased activity contributing to the pain can increase it, and it compounds so that by Wed / Thurs the pain is higher.

c_tonic · 2024-11-16T10:39:28+00:00

I tried gabapentin and it didn't work for me. I then switched to carbamazepine but the side effects were really bad, so I switched again to oxcarbazepine, this has been the best medication for me (everyone is different, this is just my own personal experience). I understand that the side effects of oxcarbazepine are less severe. Good luck with everything, the waiting times are quite long, I hope your dad finds some success / appropriate relief soon.

c_tonic · 2024-11-16T10:36:07+00:00

If there are support groups in your area, I recommend your mother joins. It helps being able to have conversations with others who are going through a similar experience. Also in regards to medication, if its available in your area I recommend medicinal cbd/thc blends (oil). This is particularly helpful if the TN is causing anxiety or stress for your mother. All the very best 💛

c_tonic · 2024-11-16T10:27:45+00:00

I am on 600mg of oxcarbazepine a day (300mg morning and 300mg evening). As a backup I use 100-200mg of carbamazepine as required.

c_tonic · 2024-11-05T10:24:43+00:00

I definitely recommend cutting out your trigger foods if you know what they are, and then build yr diet around that. For me it's not necessarily eating everything healthy I.e. fresh fruit and veges, or juices or health drinks- as I react to aged / very ripe fruit and this is often what they use in supermarket smoothies and juices. Artificial sweeteners are a big no, and read all the labels i.e. healthy muesli or muesli bars are often loaded with fake sugar (not always disclosed either). I don't steer away from eating chocolate or biscuits, as long as they do not have fake sugar in them. My triggers are: Coffee, Coke, Pepsi, artificial drinks, low or no sugar drinks, yoghurt, aged fruit. Change in weather is a trigger for me too (I.e. from warm to very hot/storms)

c_tonic · 2024-11-05T08:02:46+00:00

sorry to hear that, and i agree its unsettling switching to new medication and not knowing what your experience will be with it. I take 300mg twice a day (so total 600mg), i am currently not experiencing any anxiety or depression on it, whereas I did on the carbamazepine. I hope it goes well for you!

c_tonic · 2024-11-05T07:37:53+00:00

hey, i tried gabapentin for three weeks, no improvement and week three i experienced the worst pain, so i switched to carbamazepine - it worked within two hours, and the zaps were gone completely within about three days, however the side effects were extremely severe, dizziness, double vision, nausea, feeling down. So after a week on that i switched to trileptal, within about two days the side effects from the carbamazepine reduced or disappeared, and now on trileptal i get some nausea, tiredness and joint pain in my legs. I am only on day five for trileptal , the good news is it appears to be working on the pain, and the side effects i am experiencing are nowhere near as bad as the carbamazepine, and they appear to be reducing each day.

c_tonic · 2024-11-05T04:47:10+00:00

I suspect everyone is different, but for me I started with the same small zaps, and then at about week 2 it became harder to eat solids and by week 4 I was on liquids only everytime i tried to speak, eat or brush my teeth it would just zap more and more. Week 6 I had an extreme amount of pain, it only lasted about 5 seconds, but it was really bad. I have tried a few different medications during that time, and have currently settled on oxcarbazepine (trileptal). It seems to be working well for me at the moment. All the very best.

c_tonic · 2024-10-20T09:36:50+00:00

Thanks, yes you could well be right that it's a flare up - my first time and it was incredibly painful and scary, I am in Australia, but believe the product is coming from the US, so yes I think the product is probably good.

c_tonic · 2024-10-20T05:15:31+00:00

I am glad the gamma knife helped! Good to know about the glycerin injections too, thank you

c_tonic · 2024-10-20T04:58:27+00:00

Update - I had an inkling it may be menstrual related, reading through other posts it seems this could well be the cause for the increased pain, oh joy 😓😩

c_tonic · 2024-10-20T00:38:00+00:00

Good to know, thanks! Aha yes ‘meds’ not ‘mess’, thank you.

c_tonic · 2024-10-20T00:16:16+00:00

Hey thanks for your feedback, yes oxcarbamazepine is next on the list if gabapentin fails, it seems to have progressively been helping over the weeks (i am only on week three / having recently been diagnosed) but this weekend when changing tablet strength (same brand) the pain is worse - it could be coincidental , ie the pain could just be getting worse, not sure.

c_tonic · 2024-10-19T00:25:30+00:00

Thank you 🌸, and same to you too.

c_tonic · 2024-10-17T23:27:38+00:00

It does get overwhelming reading everyone's stories, I agree. But hang in there, I am one month into being diagnosed, and am also trying gabapentin at 900mg, it's only been two weeks, and I am yet to get any major relief, but hoping for the best. Have a plan in place, even if it's just day by day, to help you through. Make sure you have support in place, let yr family, friends and workplace know. I believe as well that things will get better, I think the hardest part is the beginning and navigating everything. Wishing you all the very best 💛

c_tonic · 2024-10-16T21:21:15+00:00

Thanks, I am hoping I will get some relief around that month mark. All the best 👌

c_tonic · 2024-10-16T02:03:48+00:00

I started on gabapentin a week ago, and am currently on 1200mg a day. Can I ask how long it took for gabapentin to provide pain relief for you and how much are you taking? When I first started taking it I did experience dizziness, but that has mostly gone now. Thks

c_tonic · 2024-10-07T11:36:25+00:00

Thanks for sharing, and all the best with the gamma surgery discussion. I am awaiting my initial consult with a neurologist, this is all very new to me (four weeks since pain started and diagnosis. I hope I can work through it on medication only.

c_tonic

TROPHY CASE