So I've had to start yet another medication (little backstory, I've been able to be on Gabapentin alone with marvelous results and minimal side effects except shocking weight gain, ugh, for 20 months now) though it started failing me around August last year, so they maxed me out at 3200mg daily and added 60mg Baclofen, which again worked really quite well for a couple of months...Then they added in Effexor-XR because it was breaking through, but that did bugger all except mess me up so the doctor let me stop taking it and I managed alright just on the Gabapentin/Baclofen...Till just over 2 weeks ago when it broke through badly, to a level that wasn't really tolerable (I can/do live with low grade clusters/ticks/pops/flashes etc, only way I can describe them) so he started me on Topamax...
I'm rapidly running out of medications that I'm able to try, this is my third year with TN and I've already been through a few (most haven't worked) and there aren't many left that will be suitable to me/that I can afford. So I'm freaking out slightly, especially because of the fact that I'm starting to become anxious/fearful about being on Topamax/not wanting to be on it..The doctor prescribed me 100mg (of which I get horrible side effects plus still breakthrough pain) but after discussing my biggest fear with him, he's suggested scaling it back to 50mg and just 'tolerating the pain as long as possible' (he isin't an ass, he's actually a pretty good GP and when I first felt TN pain, said straight away 'I think you have TN' so I lucked out on that score! He knows the medication dead end so it's becoming a tough it out kind of situation each time)...But it all hinges on what the optometrist says, who I can't see till Friday.
First week of Topamax was at 25mg, next 2 days at 50mg, 75mg the next night then 100mg from then on (under doctors instructions)..Though it's now been dialed back to 50mg a night. The pain is liveable with. But I'm terrified about the side effects because it's effecting my eyes, among other things. More than once I've been asked if I'm stoned because my eyes are constantly bloodshot, and my vision verges on blurry sometimes. The doctor warned me glaucoma can be a side effect of Topamax so I'm...More or less sitting on the edge of anxiety all day every day. I don't want to risk my eyesight. Apparently it can make you nearsighted as well, and I've found when my TN acts up, I can't wear sunglasses as they seem to touch my ear just right...So I couldn't wear regular glasses.
I'm waffling...I'm so sorry guys >.< I tend to ramble on at the best of times but even more so now on this stuff. I guess if you totally disregard all the waffling lol and skip to this part, is anyone on Topamax? What dose/any side effects, etc?
I have been on Topamax for about a year for Post-op headaches from HELL. I take 100 mgs at bed time and the only problem I have is a bit of blurred vision sometimes in the right eye. I have lost about 45 lbs. I need to go to the eye doctor also, but the tore my cornea during the MVD back in August of 2012. I did not tolerate over 100 mgs well so I will not take more than that. (I am in charge of my body as far as that goes). I get Botox injections for the headaches but because of an insurance company change they are 3 weeks overdue and the headaches are back at 110%. They were down to about 70% which was livable, but I still needed the Topamax. If I were you, I would not give it up until you see the eye doctor. Just my thoughts because you mentioned weight gain. Hang in there. HUGS
I was on Topamax for three and a half years, but had to stop in August. I found it to be affective, but the side-effects very rough. My neurologist said it caused mental dullness and I agree with that assessment as it was really hard for me to remember things. The neurologist did a mini mental status exam and I failed it because remembering words and spelling was extremely hard. Topamax has the potential to cause kidney stones and unfortunately during the time I was on the medication, I had three different times of kidney stones. The one nice thing was I was on a medication that caused weight gain and Topamax causes weight loss, so they equaled each other or as it cause weight loss.
Hi Lupa. I started on 50mg for my chronic migraines with stabbing eye pain (I felt that removing my eye would be a better solution than having the pain). I eventually have worked up to 75mg in the am and 100mg in the pm. It was difficult for me to get used to. My problem was that I lost my appetite completely and lost a lot of weight. Eventually my appetite returned and so did the weight... darn ;). It is a tough drug to get used to, but it really helped me with the horrible stabbing pain in my eye. But again, it was for chronic migraines. I take other meds for the TN. Best of luck to you!
I'm very grateful, my eyes checked out ok...Blurring/bloodshot is apparently the Topamax drying up my natural moisture, and thanks to a reduced blink reflex/all my meds..I'm just not noticing the pain of no moisture until it's at the point I'm blurred and horrid looking. Bluh. :( But Topamax isin't great. I'm able to sit on 50mg at night combined with 3200mg Gabapentin and 60mg Baclofen doled out during the day/night, and be pretty good...It seems to have balanced finally, which I'm so grateful for. Mild pain, fully tolerable.
I can live with all the side effects, because it's better than the pain of TN...But I'm genuinely struggling this time, more than I have with any other medication. The numbness/disjointed feeling especially is upsetting/difficult. Anyone know if this passes or is it permanent?
I started taking Topomax last Thursday and I too am coming to the end of the drugs which are available to help with TN. So far I haven't had any side effects. I have put on 20kgs with the concoctions of pills I have been on in the past, so was quite excited to read about the weight loss on these... as long as they help with my pain is all I care about; which they haven't really started doing yet, still early days I suppose.
It would be really nice if it helped me lose some of the weight stacked on by other meds for me, too! I think it can make you go into ketosis though, so I'm not sure how safe that is for me, being a diabetic :-s