Hi, my husband has been diagosed with VM for five years. In 2021 he was precribed Topiramate 50mg and Amitriptyline 30mg and has been on it ever since. For the last year and in particular over the past couple of months he’s had disturbing symptoms of tingling, muscle spasms and even a feeling he can’t swallow properly. An MRI has come back normal so neurologist is suggesting increasing his precriptions to manage the symptoms.
We’re both worried though that the drugs themselves are causing the issue. His vertigo has abated while being on the drugs but what does long term useage do to the system. Any thoughts would be welcome.
Anxiety can cause that. It happened to me once and it was pretty scary (which of course is a vicious cycle)
Have you considered seeing a suitably qualified psychotherapist with experience of vestibular patients to help with anxiety?
30mg of Amitriptyline is already fairly optimal for MAV/VM. You don’t want to be taking anticholinergics at high doses for a very long period of time.
I think I’ve experienced similar symptoms. In the beginning when I was on Topiramate I had what I call “brain zaps”. The neurologist titrated me up, then up more saying it would just take more time for my body to adjust. After almost a year of titrating up & down waiting to see if Topiramate would actually help with my VM, it was obvious it wasn’t working. In fact VM symptoms were worse & a boatload of new symptoms. Bottom line…I ended up with Serotonin Syndrome on top of VM! That was 9 years ago. Today I still have VM but it’s manageable. It has gotten better. I was completely hopeless to the thoughts of wanting to be dead. I didn’t think anything would ever help. Now, 9 years later, I have hope & am feeling much better, not completely healed, but better than it began & hopeful. I can now tolerate my new normal.
I haven’t heard good things about Topiramate, but I am not a doctor. Others on this site mentioned that it is a great medicine. Have you tried using ChatGPT and reading about the side effects of both drugs? I know AI has its limitations, but it can be a huge help in tracing weird symptoms.
It looks like my search for specific topics on the side effects of Amitriptyline and Topiramate didn’t turn up any direct matches on the forum. But don’t worry, you’re not alone in wondering about these meds—side effects are a hot topic for many dizzy folks!
You might want to check out the Medication > Combo's, Medication > Antidepressants, and Medication > Anticonvulsants categories as suggested by @turnitaround. There are often discussions about personal experiences, side effects, and long-term use there. And if you want to get really meta, you can always start a new topic—sometimes the best answers come from sharing your story and seeing who else pops up with similar experiences!
If you want, I can also fetch some general info about long-term side effects of these meds from reliable sources. Just let me know! And remember: always consult your doctor before making any changes—I’m here for support, not prescriptions (unless you want a prescription for laughter, in which case: take two jokes and call me in the morning).
Here are some good forum topics discussing the side effects of each medication individually:
Topiramate:
“Topiramate: Memory Loss?” – Users discuss cognitive side effects like memory issues and “brain fog,” but also share positive experiences. Read here: Topiramate: Memory Loss?
“Changing side effects on Topamax” – Covers tingling, muscle twitching, dry mouth, and anxiety, and how side effects can change over time. Read here: Changing side effects on Topamax
“Topiramate” – Focuses on hair loss as a side effect and concerns about switching medications. Read here: Topiramate
Amitriptyline:
Unfortunately, my search didn’t turn up a dedicated topic specifically for Amitriptyline side effects. However, discussions about tricyclics like Amitriptyline often appear in broader threads about medication experiences and combos. You might find relevant posts in the Medication > Antidepressants category or by searching for “Amitriptyline” on the forum.
If you want a prescription for more side effect stories, just let me know—I’m always here to dispense a dose of forum wisdom (with a side of robot empathy)!
Thanks all, what we’ve found is that the doctor’s are very dismissive of worries about side effects, but his vertigo has been under control while under the meds and now he’s upping them rather than lessening them to control body tremours.
Thanks he’s already having increased symptoms since increasing the dose so has decided to go back to original prescription until he’s managed to see a neurologist
> Combo's
magnifying glass) and DizzyBot.