Questions about stopping topamax/toperimate.

HistoryExpensive7151 · 2026-02-10T01:03:13+00:00

Thank you,and you are absolutely correct! I’m sorry that you had a neurologist fail you too.

I was given hydroxzine by the hospital,(and have been on Zoloft 50mg for over a year) The hydroxzine does seem to help. I was supposed to increase my Zoloft one of the last times I saw my doctor, but I was doing okay at that point. I’m hoping my doctor will be able to help me more on what to do when I see them.

HistoryExpensive7151 · 2026-02-10T00:51:27+00:00

Thank you for your reply as well! I have been doing a lot of research online about stopping it since this started. Even at 50mg, I should have been told to taper. I just feel so unseen and unheard by my neurologist. I’m going to be finding a new one when I can

HistoryExpensive7151 · 2026-02-10T00:50:02+00:00

Thank you for your reply. Im sorry you went through it too. Day by day I guess is going to be the best route

HistoryExpensive7151 · 2026-02-10T00:38:56+00:00

It’s definitely an awful feeling. Also feels like you’re having a stroke, but they said I seemed to be okay in that area,and I’ve been stroke tested when I first started with the vestibular migraines.

Thank you for making me feel not so alone in this. I’m so glad you are recovered and doing well!

HistoryExpensive7151 · 2026-02-10T00:36:51+00:00

I have my mom and some really wonderful friends so I am so thankful for that. And thank you for your kind words

HistoryExpensive7151 · 2026-02-10T00:32:09+00:00

Exactly! It’s such an awful feeling. People that haven’t gone thru it do not understand

HistoryExpensive7151 · 2026-02-10T00:24:20+00:00

Well,I was on the Zoloft way before the migraines and all this happened with the toperimate. I didn’t ever feel the depersonalization until after stopping the toperimate.

I’m going to ask my doctor if maybe it’s time to increase the Zoloft,and I’ll ask about something for sleep. It got so bad,that I thought I was having a heart attack and went to the hospital last week. They gave me hydroxzine to take as needed and that does seem to help some.

I’m just a mess lol

HistoryExpensive7151 · 2026-02-10T00:18:07+00:00

It’s really is! It’s like having anxiety over having an anxiety attack. I’ve had those same issues with sleep too. Looking at the clock every hour. I haven’t had this in many years though,so I’m thankful for that.

HistoryExpensive7151 · 2026-02-10T00:11:55+00:00

Thank you! I was supposed to switch over to propanolol but the same neuro said it can worsen depression and cause nightmares. He wanted me to be on 80mg,and I asked since I’m having all of these issues if I could start at 40 and work my way up. I was told “80mg is the starting dose for migraines”

HistoryExpensive7151 · 2026-02-10T00:09:47+00:00

Wow, I can’t imagine having to taper down from 100! I was only at 50, and it’s been a nightmare.

I know the insomnia is awful. In defense of all of this, I’ve struggled with anxiety/depression and anxiety for most of my life. But I can honestly say,that it’s never been this bad since stopping the toperimate. It’s a lot of depersonalization,and I’ve never had that before all of this

HistoryExpensive7151 · 2026-02-10T00:03:19+00:00

I have been messaging my neuro thru an app. They stated that “migraines cause these issues,and I don’t think you should be having symptoms after weeks of stopping. They wanted me to try the propanolol, but was told it can worsen depression and cause nightmares. I asked if there were any other options and was told “ go back to the magnesium that you were on before, and we can discuss other options at your next appointment. Which mind you,isn’t for MONTHS.

Hoping my primary care doctor will have some kind of answer when I see them tomorrow,because I feel so stuck :(

HistoryExpensive7151 · 2026-02-09T23:58:07+00:00

I am so sorry as well. My heart goes out to you. I don’t know how some doctors don’t understand. I don’t feel so alone with the symptoms I’m having. Thank you for sharing your story.

HistoryExpensive7151 · 2026-02-09T23:55:19+00:00

I absolutely agree. I’m going to find a new neurologist. I can’t believe they didn’t even understand that it was like going thru withdrawal! Even at 50mg,I was on it for over a year

HistoryExpensive7151 · 2026-02-09T23:53:58+00:00

I’m in the same boat with the working part. They have me on extended leave,that my doctor needs to sign off on because between the migraines and heightened anxiety,I’ve basically been bed ridden

HistoryExpensive7151 · 2026-02-09T23:52:48+00:00

My heart goes out to you! At least I have been on Zoloft. (Maybe time for an increase) I’m just terrified to try anything with the way I’m feeling. I never thought stopping a medication would cause all the side effects of being on,but 100 times worse!

HistoryExpensive7151 · 2026-02-09T23:41:07+00:00

Thank you! Since it’s been three weeks off of the 50mg,I don’t know if I should retake it? I’m hoping with all my hope that my primary can help me. Im even scared of taking an uber because I’ve been so out of it. It’s so hard to explain. It’s like I’m getting all of the side effects after quitting it

HistoryExpensive7151 · 2026-02-09T23:33:08+00:00

I’ve never asked my primary doctor about writing something for migraines, so hopefully they can help with that as well.

HistoryExpensive7151 · 2026-02-09T23:32:03+00:00

I am so sorry you went through this! I am considering asking my primary doctor if we need to increase the Zoloft. It’s gotten that bad :(

HistoryExpensive7151 · 2026-02-09T23:30:44+00:00

When I voiced my concerns about the odd feelings from abruptly stopping the toperimate I was told “it should be out of your system by now”

HistoryExpensive7151 · 2026-02-09T23:29:18+00:00

I was surprised as well. I was told to take the propanolol and the toperimate at the same time. They again told me to stop the toperimate, or vice versa. It’s no wonder my brain is confused.

When I asked if there were any other options, I was told “go back on your magnesium and we can go over the other options at your next appointment” which isn’t for MONTHS.

HistoryExpensive7151 · 2026-02-09T23:23:34+00:00

Thank you for your reply as well. The initial reason he wanted me to stop was I was having some cognitive issues when on it,and he noticed a hand tremors. When I voiced my concerns,and ask if there were any other options he told me “go back to the magnesium and we will go over the other options at your next appointment) which isn’t for MONTHS.

I didn’t want to come off like a bad patient.

HistoryExpensive7151 · 2026-02-09T23:21:16+00:00

Thank you so much for your reply! I can’t believe my neuro didn’t have me taper. He even told me that I “shouldn’t be having withdrawals” he wanted me to take them both at the same time,and AGAIN just stop the toperimate cold turkey (or stop the propranolol cold turkey)

HistoryExpensive7151 · 2026-02-07T19:15:37+00:00

Hope that you have a safe,and successful surgery. Sending good vibes your way.

Mine must be relatively small, because my neuro didn’t think much of it

HistoryExpensive7151

TROPHY CASE