General Warnings

How Topamax Ruined My Life

Topamax is a brand of topiramate, a prescription drug that belongs to the class of drugs called anticonvulsants. Anticonvulsant drugs work in your brain to help prevent seizures. Topiramate was discovered in 1979 by Bruce E. Maryanoff and Joseph F. Gardocki during their research work at McNeil Pharmaceuticals.

Topiramate was easily synthesized, had an excellent pharmacological profile, exhibited low toxicity, and had drug-like properties. The attrition of other development projects over the years caused topiramate to rise in priority, such that it entered into the top ten. An Investigational New Drug (IND) application was filed with the U.S. Food and Drug Administration (FDA) in 1986 and marketing approval from the FDA was received at the end of 1996 and commercial usage of Topiramate began in the same year.

Topamax was first introduced to the marketplace as an antiepileptic drug for adjunctive therapy with other agents, and its use in monotherapy was approved later. Clinical trials for other potential indications were performed, which led to the finding that topiramate is very useful for migraine prophylaxis. Peak annual sales of Topamax (topiramate) reached 2.7 billion U.S. dollars. Topamax is FDA-approved in certain situations to:

•          Prevent migraine headaches in adults as well as children ages 12 years and older.

•          Treat epilepsy* in adults as well as children ages 2 years and older with:

o          partial-onset seizures

o          generalized tonic-clonic seizures

o          seizures linked to Lennox-Gastaut syndrome (a rare form of childhood epilepsy that causes several different types of seizures)

Topamax comes in two different forms:

•          A tablet that you swallow. It’s available in strengths of 25 milligrams (mg), 50 mg, 100 mg, and 200 mg.

•          A sprinkle capsule. The capsule can be swallowed whole or opened to sprinkle on a spoonful of soft food and swallowed. The capsule is available in strengths of 15 mg and 25 mg.

However, while some patients are reporting good news with the medication, others have experienced several unpleasant side effects while taking the drug.

Some have complained that Topamax aggressively dried them out, hurt their collagen, leading to extreme weight loss, paranoia, addictive behavior, bipolar and then suicide attempts.

Penny Sand wrote “My experience with Topamax has been both positive and negative.  Initially, I was on 100 mg for 18 months.  It controlled my symptoms, but I felt sluggish and stupid.  I couldn’t think or respond quickly (compared to myself in pre-Topamax days) and was always at a loss for the right word.  My hair also started falling out.  I did lose weight…about 20 lbs, which was a good thing.

With my doctor on board, I slowly withdrew from Topamax.   We were hoping that since the radiation had shrunk my tumor a little, maybe I wouldn’t have seizures anymore.  It took about a month to withdrawal.  It was so nice to have my mind back!  My hair stopped falling out too. But talk about the rebound appetite…I gained 20 lbs back plus another 5.  Wasn’t prepared for that!

After about 5 weeks without Topamax, the seizures started again.  I went back on it, but this time, my doctor advised titrating up much more slowly.  As it turned out, 50 mg seems to be working fine for me.  My mind is clear, and the seizures are under control.  So far, no unusual hair loss either.  I still feel sluggish, but nothing like it was on 100mg.  No weight loss, but no gain either.  I’d rather be off the stuff altogether, but I can live with 50mg if it means no seizures”.

Becca another user had this to say  “I was given Topomax about 2 months ago for recurring migraines; it did nothing but make my life a living nightmare. I started with a complete loss of appetite followed by extreme nausea. After that, the psychological effects started. I become extremely paranoid; The anxiety and paranoia got worse and worse the longer I was on Topamax which was soon accompanied by intense depression. Next came the hallucinations; I would see paintings moving on the walls, see colors and shapes moving across the floor, and I would hear voices multiple times a day. I fully regret ever taking this drug, I want my life back.”

Erin Gibson on his part posted as follows “Topamax ruined my life! Kaiser put me on it until my Psychologist said “get off of it if it’s not working” after I told her I had been on it for over a year! This medication caused tingling in my hands, feet, face and caused me to see people’s faces in distorted ways like a horror film! My headaches are caused by a 2cm round tumor in my left temporal lobe near my cortex at the Hippicampos Hypathalamus, it causes light seizures and horrible right-side brain headaches! Even though neurologists say it’s not connected, I know from research it is connected and no one is helping me deal with the horrific debilitating headaches! So when Kaiser said “try Topamax,” I said sure why not! I lost 2 years of my life with my son who was a Jr in high school, it’s a miracle my husband of 25 years stayed married to me! Topamax ruined 2 years of my life ”

What are the more common side effects of Topamax?

Below are a few of the more common side effects reported by people who took Topamax in studies. These side effects can vary depending on which condition the drug is being used to treat.

More common side effects in people taking Topamax for migraine include:

•          tingling in the legs and arms

•          loss of appetite

•          weight loss

•          impaired taste (changes in how things taste)

•          trouble with memory

More common side effects in people taking Topamax for epilepsy include:

•          tingling in the legs and arms

•          loss of appetite

•          weight loss

•          dizziness

•          sleepiness

Why People Have Bad Experiences With Topamax

While Topamax is generally considered safe and effective, some people may experience negative side effects or have a bad experience with the medication. Here are some reasons why:

1.      Incorrect Dosage: Taking too much or too little Topamax can lead to negative side effects. For example, taking too much Topamax can cause drowsiness, dizziness, and an increased risk of falls. On the other hand, taking too little Topamax may not provide adequate symptom relief. It’s important to follow the dosing instructions provided by the prescribing physician and not to adjust the dose without consulting with them first.

2.      Cognitive Side Effects: One of the most common side effects of Topamax is cognitive impairment. People taking Topamax may experience difficulty with concentration, memory, and attention. These side effects can be particularly problematic for people who need to be mentally alert, such as students or people who work in safety-sensitive positions.

3.      Interactions with other medications: Topamax can interact with other medications, including over-the-counter medicines and supplements. For example, Topamax may interact with antidepressants, antipsychotics, and certain antibiotics. If someone is taking Topamax alongside another medication, there is a possibility that the medications may interact in a way that causes negative side effects. It’s important to inform the prescribing physician of all medications, supplements, and over-the-counter drugs being taken before starting Topamax.

4.      Kidney Stones: Topamax has been associated with an increased risk of kidney stones. In fact, some studies have shown that people taking Topamax may have up to a 10-fold increased risk of developing kidney stones. Symptoms of kidney stones include severe pain in the back, side, or lower abdomen, nausea, and vomiting. If someone experiences these symptoms after taking Topamax, they should seek medical attention immediately.

5.      Allergic Reactions: While rare, some people may have an allergic reaction to Topamax. Symptoms of an allergic reaction include rash, hives, and difficulty breathing. If someone experiences any of these symptoms after taking Topamax, they should seek medical attention immediately.

6.      Mood Changes: Topamax has been associated with changes in mood, including depression and anxiety. People taking Topamax may also experience irritability, agitation, and suicidal thoughts. If someone experiences these symptoms after taking Topamax, they should seek medical attention immediately.

Overall, Topamax is a safe and effective medication for most people when taken as prescribed by a doctor. However, it’s important to be aware of the potential risks and to inform the prescribing physician of any pre-existing medical conditions, other medications, or concerns about the medication.


Dr. Oche Otorkpa PG Cert, MPH, PhD

Dr. Oche is a seasoned Public Health specialist who holds a post graduate certificate in Pharmacology and Therapeutics, an MPH, and a PhD both from Texila American University. He is a member of the International Society of Substance Use Professionals and a Fellow of the Royal Society for Public Health in the UK. He authored two books: "The Unseen Terrorist," published by AuthorHouse UK, and "The Night Before I Killed Addiction."
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