Starting Topa, wish me luck

A little aprehensive based on the side effects that I have heard, but I am going to go for it. Nori, and Klonopin have done nothing for me so on to the next.

Don’t worry about the side effects and the shit you read online. I’ve been on Topamax for months. Up to 100 mgs right now and still no side effects. You might feel a little weird with each titration, but stick with it, it wears off.

What symptoms has it helped you with? Would love to reduce this head fog and eye sensitivity I have

Honestly, it haven’t helped with those two problems yet, and those are the reasons I am taking it… Once I hit 100mgs, I had a great 2 weeks where I felt better, but then I went back to my baseline. I will see if I am going up more in a few weeks when I see my Neuro again. Sorry I didn’t have anything more positive to say, but you know, everyone is different. I was really confident those two weeks and hoping to get them back. Stick with it and brave the side effects.

Do you have any other eye problems? Or just the photophobia? I have photophobia plus lots of persistent, constant aura problems.

Eye pressure and sometimes pain behind the eye. Optho says eyes are normal physically and neurologically. Hoping its chemical at this point. Going to the Uninversity of Michigan next month, they are supposed to be the best.

Really wishing you good luck! I might be following you and starting Topamax myself soon. I am still freaking out about the side effects. Has anyone experienced hair loss from Topamax? x

No hair loss…:slight_smile: go for it jem! It may be ur lifesaver! It helped me alot!

You guys who are on Topamax - could you post the titration schedule you used? I’m just starting on it and am thinking it might be better to go up slowly & get my body used to it before taking it to the next level. How long did it take to go from 25mg to 100mg? Has it helped with visual vertigo (using a pc, moving head down & sideways, etc) and balance issues when standing still? Your experience would be appreciated.
Thansk - Barb

I just went up 12.5 about every 2 week’s at night. Once I hit 50, I started taking the 50 at night plus the 13.5 in the morning and so on, spread put between 12 hours. The only big jump was from 75 to 100 because I felt my brain could handle it.

I never had problems with computers. I do think it helped my balance and what not. Like I mentioned, I had a great two weeks, but now back to baseline. My main problems are constant visual phenomena and brain fog…no help there.

I tried topa, the side effects were manageable, and not any worse than any other medication, in my experience.

I went up on the Topamax pretty slowly, increasing by 12.5 about every 3 weeks and I had increased symptoms for about 2 weeks with every dose increase. Now that I am on a stable dose of 67.5 I am starting to feel better. I am symptom-free more than half the time now. I see my neuro next week to see whether I will increase my dose again or wait at this dose a bit longer.

Good luck,

Mary Lee

Thanks everyone for your replies & titration schedules - the one my specialist sent is much faster than those, getting up to 100mg in 4 weeks & jumping up 25mg at a time. For me, I think I’ll go the slower route - I’m so med sensitive & as this is the fifth one I’m trialling I want to give my brain the best chance to adapt to another med!
Mary Lee - Looks like it’s working well for you - keep us posted.
nokes - good luck - will be interested to see how you go
awalkerphoenix - sorry you haven’t found relief from your visuals & brain fog
Jem - seeing Dr Surenthiren makes a lot of sense - can you hang on with the nori until then? I’m taking 100mg Dothep with the Topa so he might add that to the nori for you.
BeautifullyBroken - your success has helped me decide to give the Topamax a try - I hope things are going abit better for you now.

Hi Barb!

So glad ur giving topa a try! Yes, topa has saved my life in so many ways!! I started topa back in sept 2012 @t 25 mg. I quickly got up to 100 mg in about 4 weeks. Worst four weeks ever! My MAV went haywire! I almost quit topa. At 100 mg, I didnt notice a dif until 3 weeks in… Using the comp got better, driving was better, life was better!!! I couldnt believe it…thank god! I am now doing pretty well, hanging on! I have been under way way too much stress so my threshold is down. My triggers r back. It sucks. But i believe without the topa, Id be way worse. Hang in there Barb, it may get a little worse before it gets better.

Lisa x

Thanks Lisa
Your rapid rise on the topa sounds a bit drastic for me!! But glad to hear how well it has worked for you after your initial struggle. It’s hard to accept that we aren’t going to just stay on a nice firm plateau once we reach our goal (95-100%!). I suppose as long as our expectations are realistic & we know there are going to be bumps along the road we will be OK -trouble is, I suppose, once we get that ‘magic normality’ back we aren’t prepared to give any of it up!!
I’m opting for a slow but steady rise on the topa & keeping positive!

Barb, it is heartbreaking when MAV selfishly snatches away progress. But it’s been responsive to meds before, you’ll beat it again, hopefully this time around you’ll bounce back quicker. Can I ask about the periactin, was that just not working from the start, did you get results initially and then it stopped, did you try increasing the dose?
Good luck with topamax, I really really hope it works for you.

Re the Periactin - yes it did give me some improvement initially when I got up to the therapeutic dose of 12mg at 8 weeks but then it went downhill from there so at 12 weeks I was back where I was before starting the Periactin. At least I know I gave it a good trial so I can cross that one off my list! I’m keeping positive & using everyone’s experiences they have so kindly shared to map out a plan for myself & ride out the side effects.

Started at 12.5 now at 25 mg. Nausea was the only noticable SE to start now that is subsiding. Also cant taste carbonation, weird!. No help with symtoms, vision and dizziness almost seems worse. Brain fog is no worse, gonna stick it out and hopefully get to 100mg, if no change, on to the next. Hang in there everyone, I wish you the best. Remember there will always be better days!

One more question please- those of you who have been upping the dose by 12.5mg - are you cutting the 25mg tab in half or can you get the Topa in 12.5mg tabs? The 25mg tabs are so small I am wonder how accurate this this would be.
Nokes - have you decided on a titration schedule yet/

Barb, Yes I am cutting them in half, one half in the morning the other half at night. They are a little small but I use the same pill for each day so it is a total of 25mg per day. I am going to go up 12.5 every two weeks and see how it goes. Like I said the only SE so far is a little nausea, I will keep you posted as I progress.