The dangers of Topiramate

[milew]

There have been a lot of posts about Topiramate here, so I thought I'd try to make some important points clear:

1. A large number of people claim that it has very serious, and potentially permanent, side effects which medical professionals might to try to mask with terms like "cognitive slowing". Just look on this forum and other forums. I know you shouldn't believe everything you read on the internet, but why would so many people be making these claims when they have nothing to gain by doing so? And these are very serious claims. If someone's intellect is a key part of their personality, then many people would say this drug takes away their personality, takes away who they are, which some people would even say is a fate worse than death. And those under its effect may be under such a mental fog that they are unable to see this.

2. There have been no clinical studies into its long term effects, according to one of my previous neurologists who had access to all the medical journal subscriptions. Although he did say that a few years back, there is some data starting to be published, e.g. "Use of Antiepileptic Drugs and Dementia Risk—an Analysis of Finnish Health Register and German Health Insurance Data" from 2018. It is not difficult to do a formal clinical study. All you need are a large group of people who have cognitive ability tests before starting taking the drug, while taking it, and periods after stopping taking it, along with a control group to confirm results might not have other potential causes like natural ageing. The problem is such tests are expensive to run, and there is no financial incentive for running studies which might result in the ending of the sale of a drug which makes billions of dollars profit each year.

3. Nobody is keeping track on who is using it, let along following up to check on any potential long term effects, so its not even as though the people being prescribed it are being used as proper human guinea pigs.

4. Despite their being no organised patient support groups, there have still been several successful lawsuits against the manufacturers of Topiramate for other known serious side effects. Search for "topiramate birth defects" for example.

5. Nobody seems to know how it works. With most drugs, professionals have a rough idea of the action it has, e.g. Propranolol is a "beta blocker", i.e. a "non-selective beta receptor antagonist" which means "it competes with sympathomimetic neurotransmitters for binding to receptors, which inhibits sympathetic stimulation of the heart". But try asking a medical professional how Topirimate works.

Despite all of this:

1. Medical professionals are prescribing it quite casually, with no apparent regard for the potential consequences. Just ask people on this forum for evidence of that.

2. It is being used quite indescriminately, being used to treat all manner of unrelated conditions, from epilepsy, migraines, weight problems, alcohol dependence.

3. It is used on a massive scale, with over ten million prescriptions in the US a year according to wikipedia.

Writing all of this, its hard not to feel that the current Western medical system is fundamentally flawed.

[designer111]

Yes it is pretty awful to be prescribed somehting like this. I had awful anxiety and could not stio rying for a couple of months. My GP said some of his patients work well with it. But maybe we just want to try anything? Not good though when the side effects are known to be unpleasant and the GPs (prob being paid to prescribe it) still offer it.

[troy04]

While it has been established (by researchers) that Topiramate has negative effects on memory, verbal and executive functions; it would be useful to mention that:

1) A previous research found a positive association between the use of antiepileptic drugs (includes Topiramate) and dementia;

BUT....

2) A 2019 research study has found no association of such type !

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Hence, at least based on latest study we can say Topiramate won't increase the risk of dementia - considering all those horrible side effects I think this is a good news. Doctors are not armed with good medicines to treat migraine / headaches, hence they have to try what are available.

Any drug that fiddles with brain signals are no good and one of our popular choices Amitriptyline (a type of Anticholinergic drug) has been strongly linked with increased risk of dementia in previous studies and no other (recent) research has contradicted this yet.

[Onthemove1971 in reply to troy04]

Sounds like you have been thinking about this for a while.

I agree with everything you have said.

Sounds like a class action lawsuit waiting to happen.

For me I was fine ( meaning it was helping stop my migraines) for years then just one day! WOW I noticed I could not remember my password on the computer .

One of the issues is when do middle aged people start to loss their memory?

I quickly went off the drug, but unfortunately my memory is still a struggle.

I think the underlying question is why do we who have regular migraine not have access to "Migraine Specialist", we are pushed onto Neurologist that really don't do a good job at managing the pain.

With my current migraine treatment plan I have a large number of days where I feel no pain, but a few others where there is a lot of pain. This is much easier to deal with then losing my memory.

Thanks for all your effort towards this cause.

[Hopinggh]

Thank you so much for this information and insight!

My new pain dr just prescribed this. I have never taken a drug pain med before. I have been reading terrifying articles about it online.

My dr says his patients have no problems with it and mild side effects could pass in short time.

I told him.the only thing i really have is my mind. I never heard of this drug. But, i am aware drugs effect the mind.

This drug can do alot more damage, kidney stones, blindness, glaucoma, neuropathy in hands and more, seizures if going off too fast .

Next time he suggests a drug, i will say iwill think about it first. My prescription is waiting for me. I dont want to.pick it up since reading about it after agreeing to it.

Thank you for helping !

Hopinggh

[Sarayu]

I was prescribed topiramate for seizures. I titrated to 100 mg. From the first day, I had pins and needles/tingling in my feet and legs. This continued to move up my body to my face. I thought I had a rapid onset of a neurological disease. It has been terrifying. Other side effects in addition to tingling: numbness on bottoms of feet and hands that felt like swollen areas and felt strange to touch or stimuli. Vivid dreams that I thought were real - as in I though I really had the conversations that were simply dreams. Insomnia. Episodes of sudden finger numbness icy hot burning painful sensations. Foot cramping and muscle twitches. I’ve tapered off but the foot twitches continue, slowly changing and seemingly better each day. It is as though the reverse is happening as I tapered, with lingering nerve issues. I have never been so scared by a medication. I’m posting in hopes someone else can relate or to encourage someone who has similar side effects that you’re not crazy. This is not a good medication.