Hi Ali,
I’m in the same boat as you - considering a retrial of Topamax in the new year. For me, it gave me suicidal thoughts and messed up my lower gut quite badly after 3 days. I may have started on too high a dose and will likely cut it way back in the same way Julie and Rich did if I go back. A scary prospect but hard to turn away from when I see how much it helps people.
Scott 8)
Thanks for the Topa explanation Julie!
Hi Ali,
I had very similar side effects to you on topamx but only after 50mg and over.
My Neurologist has since told me he has amazing results for his chronic temporal lobe epileptic patients at only 50mg.
He was very adamant that topamax is very strong medication, and to beware of high doses.
My suggestion for anyone would be never to aim too high.
Many neurologist and Dr’s go by the standard dosing, which is to titrate slowly to 100mg a day, you’ll also see this time and time again, on numerous reputable migraine websites.
Patients are all different and most migraineurs have very over sensitive brains and don’t need these extremely high doses.
I haven’t revisited topamax either, so I can’t help you there, if I were to do so, I’d sit at only 25mg for many many months to see if it did its job.
If it didn’t I’d probably just go off it.
Good luck with your revisit. 
jen
Hi Scott,
Since discontinuing Topamax…is your gut back to normal? Or do you still have some issues with it? What about you Julie…have you resumed back to a sense of normacly sense stopping Topamax? Next Friday night i will start 50mg.
Joe
Regarding my previous post to (Scott and Jen)…and i mentioned Julie by mistake :oops: …i meant Jen. Guess that was my Topamax messing with me…Lol
Joe
Hi Joe.
boy joe, youve got it bad, I told you I was all back to normal yesterday,remember???
in that PM you sent me…lol :mrgreen:
Hi Joe,
Since discontinuing Topamax…is your gut back to normal?
Yup, totally normal but it left me with IBS for about 6 weeks after just two doses! It felt like a bomb went off down there and trashed my gut. On top of that were the suicidal thoughts for a day. And I’m considering using it again! Must be crazy but I think I might be ok on an even lower starting dose. If this stuff can work I’ll titrate it up over months if necessary to get out of this nightmare.
You still feeling fine?
Scott 8)
Scott,
I’m glad there was no permanent issue. I swear to you Scott…the 25 mg of topamax has been easy for me…no serious side effects what so ever. My doc wanted me to increase it to 50 mg this past friday but i will wait till next. I still rely on the one tab of anti-anxiety medication to help me get thru the day. I’m going to decrease the Verapamil and see what happens. I’m still uncertain how much verapamil is helping?? So i will experiment a little. It seems like i’m sleeping a little better and not sure if that is due to the Topamax or not?
Joe
jen…i have some cognitive issues trying to think of a certain word or trying to remember something but i already had it prior to Topamax…but since taking Topamax it’s a bit worse. :lol:
Joe,
Sounds like a breeze so far. I’d be changing one thing at a time if I were you. If things suddenly go pear-shaped you’ll want to know what caused it. But you may be able to dump the benzo. Richard’s anxiety was off the charts earlier this year and now he’s cool on Topa. In fact, a lot of Rich’s symptoms are pretty similar to mine which is why I am seriously considering this stuff again.
Have you ever been on an anti-depressant during all of this?
S
Scott,
The last thing i will dump is the benzo. I heard from a good source that if you don’t have a heart condition…it is probably ok to discontinue the Verapamil. I will cut the Verapamil in half and if i see no difference then discontinue it completely and see what happens. But the one tablet a day of the benzo is my saving grace so like i said…that will be my last to let go. If i’m lucky and the Topamax kicks in and really helps…then i will definitely start trying to wean off the tablet of Xanex.
I did not know your symptoms were so similar to Ritch? Isn’t great to know when someone else has very similar symptoms as yourself? I don’t find that many folks with symptoms similar too mine. I mean…a few yes…but there are some symptoms that i have that hardly anyone have. Sometimes i feel like a lone ranger. 
The last anti-depressant that i tried was Elavil (about a year ago) and that did nothing for me. I swear to you…anti-depressants have been a waste of time for me. Everything from Prozac to Elavil. Now remember…i’m only speaking for myself.
How soon do you think you may restart the topamax? If you do…start on the baby doses.
Joe
Joe,
How soon do you think you may restart the topamax? If you do…start on the baby doses.
I have to first see if I can sort this out via the Migraine Program. I’ve paid a pile of cash so have to give it a solid trial. I’ll aim to do this in the new year. If it is not doable or fails, then I’ll revisit Topamax (will start at about 4–5 mg) first before Effexor.
Scott 8)
Joe: Keep in mind that if you’re taking Verapamil SR (or ER or XR, or whatever ;)) once daily you usually can’t split them, unless they are obviously scored and say that splitting is allowed. Otherwise, you’ll get the whole dose at once rather than split evenly through the day, which could certainly cause symptoms, both from having too much when you take it to having too little 12-24 hours after.
/Tran
Tran,
That’s the best advice you could give someone, but get this! When Hain talked to me about verapamil, he actually gave me a Rx awhile ago, ready and waiting, in case I decided to start it between appts, he told me to split those extended release tablets over three days and then stay at one full tablet. I’m not sure what he does weaning down. He also said “don’t tell the pharmacists, they’ll go crazy, but it’s okay”
Julie
Hi Julie,
Saturday evening made one week…so just over a week. I was going to increase the Topamax to 50mg this past Friday but decided to wait till next Friday. Not exactly following my doctors instructions…but i want to go slower. The sluggishness is all gone…i have a little cognitive issues but that is about all.
Joe
Joe,
You are doing GREAT! Listen to your body, go at your own pace.
Good luck to you,
Julie
Joe – thought I’d add that my brother’s wife who does not have MAV but was getting a pile of migraines, is on 150 mg daily and says she has ZERO side effects. She also hardly ever gets a migraine now. It’s good to hear that there are people who can definitely handle this stuff with no adverse effects.
Scott 8)
Scott…that is such encouraging news! 150mg!! That is a very high dosage of Topamax…correct?
Scott…i have a question for you. As you know by now i don’t have severe headaches or Aura…i have the Silent Migraine type. So when i describe to everyone here about my 24/7 motion, tension and even pultzeing like feeling in my head…that must be equivalent to a headache? So that must mean i have a headache (to some degree) all of the time??
Joe
Hi Joe,
Yes, 150 mg is a high dose. I don’t think Hain aims any higher than about 100 mg for migraine unless I guess there are no side effects happening and/or the migraine problem is still a hassle.
Just because you don’t experience headaches per se as the IHS describes certainly doesn’t mean you’re not a migraineur. I don’t think Rich ever got bad headaches either, juts the usual low-level annoying ones here and there but still Topamax removed all of it. It’s just a game of hit and miss Joe. Let’s hope this one is a hit for you and you can say bye-bye to all of it.
S 8)
— Begin quote from “scott”
Hi Joe,
Yes, 150 mg is a high dose. I don’t think Hain aims any higher than about 100 mg for migraine unless I guess there are no side effects happening and/or the migraine problem is still a hassle.
— End quote
You are right, Hain tried to get me to go to 150 mg because I was doing fine at 100 and still needed help. I think if I hadn’t been on Pristiq I could have, but because of the synergistic effect regarding the cognitives, adding 12.5 of Topa made me so stupid the very next day i didn’t know whether to push the door in or out. I went out to the mail box and didn’t realize I didn’t have the mail in my hands until i got to the road.
I had a re-surge of cognitives immediately following adding Pristiq to Topa, but they settled down pretty quick, and they weren’t disabling, like the ones noted above.
Julie
Scott…that’s kind of what i thought about the (low-level like headaches). It’s hard to believe that i am dealing with headache like symptoms 24/7! This is amazing! One day at at time with…Topamax. 
Thanks for clearing that up for me.
Joe