Editorial Note: RxISK is all about people discovering things for themselves and alerting others to something that can make a real difference.
There have been some wonderful examples outlined in posts here on RxISK from Anne-Marie Kelly’s discovery of a cure for alcoholism – stop your SSRI and perhaps try a serotonin-3 antagonist like mianserin or ondansetron – to Samantha Dearnaley’s discovery that Champix (Chantix) had caused her epileptic convulsions. These were things that none of the experts knew.
Johanna Ryan gives another example below. As the resident psychiatric and psychopharmacologic expert, it’s worth noting that I had never heard of ‘Alice in Wonderland Syndrome’. It just shows that putting people with interest and/or motivation together can do far more to solve problems than going to see an expert – there are far too many things out there for one expert to know. Even if you think your expertise doesn’t amount to much, we have reached a point where pooling our expertise is a much better bet than relying on experts. (DH)
One pill makes you larger, and one pill makes you small
And the ones that Mother gives you don’t do anything at all
Go ask Alice, when she’s ten feet tall.
“White Rabbit,” by the Jefferson Airplane
I first heard of “Alice in Wonderland Syndrome” last year while reading Oliver Sacks’ book, Hallucinations. Sacks is a neurologist who is fascinated with the range of experiences, good, bad and strange, that the human nervous system can give rise to.
In Alice in Wonderland Syndrome (AIWS), objects in the environment and even parts of your own body are strangely distorted. Just like Alice, you may perceive your own head or arms as huge, while the people around you seem tiny – or you may feel suddenly shrunk, while the furniture in the room towers over you. It’s best known as a rare effect of migraine headaches and Sacks speculates that Lewis Carroll may have gotten some of the trippy inspirations for his classic story from his own chronic migraines. It’s also been known to occur in epilepsy and in viral infections, especially in children. Anticonvulsant drugs used to control epilepsy and migraines are a standard treatment. Which was why it startled me to stumble across a case on RxISK.org – as a side effect of an anticonvulsant drug!
On the Patient Narrative page for Topamax, someone reported the following:
“Intense visual hallucinations. Objects in the visual field (e.g., computer monitor, hands, arms, desk, etc.) would move far, far away in regular time then come back and be grossly enlarged. It is almost like making an MS Word document change font sizes, from 12 pt to 2 pt to 350 pt, but it was everything I saw.”
Using RxISK.org’s features gave me some clues about this person’s experience, and how common it might be. Using the “A-Z Search” function under Reported Side Effects I found the FDA had eight reports of Alice in Wonderland Syndrome on Topamax, with a “PRR” of 438.8. That means the odds were overwhelming that the drug and the AIWS were connected.
The “Location” tab in Reported Side Effects told me that six of these were from Germany! One was from the UK, but absolutely none from the USA, even though Topamax is widely used here. Checking the Location tab for All Side Effects, well over half have come from America, with no other country even coming close.
Checking “Gender” and “Age” told me that all eight were female, and seven were teenagers.
Our friend on RxISK sounded more like an American adult than a teenage girl from Germany. Was she (or he) the first? Well, she’d probably never heard of Alice, so she reported this as a “visual hallucination.” Maybe others had too.
Back to the Reported A-Z side effects, where I found 69 reports (PRR 4.9) for Visual Hallucination, 103 (PRR 1.6) for plain old Hallucination, and 73 (PRR 3.2) for Visual Disturbance. “Disorientation” might be relevant too, and there were 106 reports of that (PRR 2.4).
Fifteen of the 69 Visual Hallucination reports came from the USA, 18 from the UK, and only two from Germany. Two-thirds were female. There were nine children and 21 teenagers, but there were also twenty adults, and nineteen cases were “age unknown.”
Going to the “Outcomes” tab, I found that 39 of these 69 people had been hospitalized! That told me that probably only the more extreme cases were being reported – those where the person was terrified by their experience or it happened alongside more serious side effects.
By now I was hooked, so I went to Google. I found one professional paper on Alice in Wonderland Syndrome as a side effect of Topamax – a case report on a teenage girl in Germany who was taking the drug to prevent migraines. The authors had probably made that initial report to the FDA and may have alerted other German headache specialists to a symptom that certainly breaks up a dull workday.
There were a couple of American papers as well, though, including one about two patients with “palinopsia” and one with AIWS. All were taking Topamax for migraines. Fellow medical wonks can Google palinopsia – it’s even stranger than AIWS but I could not find a single report to the FDA.
Another paper described “Steroid-induced Psychosis Presenting as Alice in Wonderland Syndrome” and implied that the patient, who was on heavy steroids for severe asthma attacks, had been misdiagnosed with “schizophrenia.”
I also found several reports on patient discussion boards of AIWS on Topamax, including both Epilepsy.com (“Feeling a Bit Like Alice in Wonderland on Topamax”) and the psych board CrazyMeds. They were mixed in with reports of other strange symptoms – hallucinations, delusions, feelings of unreality or of standing outside one’s own body.
I was struck by something the moderator of CrazyMeds (who by the way is resolutely pro-med and will not tolerate any psychiatry-bashing on his board) said: “As with all anticonvulsants, anything Topamax can fix is also a potential side effect.” In other words, a range of symptoms of epilepsy, migraine and even bipolar disorder could also be side effects of an anticonvulsant drug taken to treat these conditions.
‘RxISK allows us to describe what’s going on and how it affects us’
If this is true then RxISK and similar efforts could make a huge contribution. As Kalman Applbaum noted, many FDA reports filed by doctors consist only of ticking a box on a list, say for “hallucination” or “anxiety.” RxISK allows us to describe what’s going on and how it affects us, as the Alice in Wonderland sufferer did. If we know people taking anticonvulsants for one condition (say, depression) experience symptoms typical of other conditions (weird visual effects associated with migraine auras), the link to the drug becomes clearer.
In the case of Cymbalta, another drug highlighted on RxISK, people taking the drug for back pain have experienced the same side effects (nightmares, moodswings, etc.) as those taking it as an antidepressant. Observations like this could teach us more about the drug and help prevent patients from being misdiagnosed with new “diseases”, like that asthma patient with AIWS.
I looked at a few of the other anticonvulsants (Neurontin, Lyrica, Lamictal). No reports of AIWS. However, all have a fair amount of Visual Hallucination and Visual Disturbance reports and all include far more Americans and adults as opposed to German teenagers. So who knows! The FDA has a category called “Feeling Abnormal” which is very large and could be hiding almost anything including Alice. We need people to report to RxISK to find out what’s going on – FDA is like Humpty Dumpty for whom words where what he chose them to mean.
RxISK reporting could help bring together communities of doctors and patients who seldom talk to each other, even though we are increasingly prescribing or taking the exact same drugs. Reading the discussion boards, I noticed psychiatry patients complained that their doctors denied these problems could be happening or connected to the drugs. Neurology patients found that their doctors were much quicker to concede that these effects were drug related, although they complained of being told to just ‘hand in there’ by doctors who didnt take the side effects seriously enough. We can also share reports from various countries where the drug-use practices can be very different, even for the same illnesses.
Reports to RxISK could also reveal a lot about the brain and the mind. Oliver Sacks first made me aware how much neurologists owe to accidents, breakdowns and “side effects”, and the reports of non-scientists who had lived through them. Who could forget poor Phineas Gage, the railroad worker who survived a sharpened crowbar being driven through his left frontal lobe? Doctors and experts flocked to examine and quiz him, trying to learn more about the brain works. Fortunately, most people logging on to RxISK don’t have anything nearly as awful as Phineas Gage had but because we know more now about the brain than we did then, reports of much less dramatic things can teach us a huge amount.
Editorial Note: The only thing a psychiatry expert can add to this is that it’s not a surprise that the recognition that this is ‘Alice in Wonderland Syndrome’ came from Germany. For well over a century, the Germans have been much interested in paying close attention to superficially similar things and distinguishing between them than anyone else has.
My report above was based largely on intellectual curiosity, and exploring what we could learn from RxISK.org. But there’s a lot to consider as well about the hazards of anticonvulsants and the hardships they can cause even for “average” patients. This story from CrazyMeds really brings those points home:
The writer developed “palinopsia” – a strange, multi-sensory sort of echo effect. (Turning from your husband to your teenage daughter, you might see his mustache and bushy eyebrows drifting onto her face. Or your lunch might change flavors when a coworker starts talking about onions or ice cream.) But she also wound up with even more disabling – and far more common – side effects like memory loss and speech problems, until her doctors thought she had dementia. Patients tend to know more, which is why this drug has earned the nickname “Dopamax.”
Doctors once knew a lot about the effects of older anti-seizure drugs like Dilantin or phenobarbitol, even while considering them a worthwhile tradeoff to suppress truly dangerous seizures. Today’s anticonvulsants are given out far more widely for a range of conditions from depression to back pain – but doctors seem unable to recognize the side effects that are right in front of their faces.
After approx 3 yrs on topiramate, I began to have symptoms my neuro thought were scary…when your doc becomes worried, so do you!! I was told to start taking keppra and stop taking topiramate (it’s a slow process to come off one and start the other, but after about 3 weeks – it was done).
It started with an out of body experience. Soon, audio and visual hallucinations joined the game. I had an MRI, blood work, 2 lumbar punctures, 2 EEGs, and a full body CT. Fortunately, no terrible stuff was discovered; however, now the docs thought I might have temporal lobe epilepsy (TLE)… I came off the keppra because it made me to tired to work AND the hallucinations continued even on the keppra. Funny thing – everything is still continuing but in a much less intense manner.
I’m currently waiting to spend 3-5 days in an epilepsy monitoring unit at the local teaching hospital to see if they can obtain enough info to confirm OR rule out TLE. also, the migraines are back now that I’m not taking any anti-convulsants.
I have been on topomax for several years now and suffer from aiws myself. But can I safely say the topomax is to blame? Not completely. I had it before even starting the medicine. Did it occur more frequently afterwards, yes in the beginning it did, that is until my body got adjusted to the medicine then my epilepsy was more controlled. I think because I suffer from focal aware and they occur in night and morning and the side effects of double vision occurred in the morning from the meds, it just kind of overlapped together causing a ripple effect as my body adjusted to the meds to control my epilepsy. It doesnt happen as much now as my epilepsy is more controlled and the side effects are calmed down. But this is just me and my experience.
When I first started taking tomamax, I just noticed that I was extra sleepy and forgetful. I’d forget things like my passwords for online accounts and which key to open my front door.. I decided that I just needed to adjust and those side effects would subside.But then I started having trouble falling asleep despite being super sleepy because I’d hear ringing or buzzing in my ears. Again, my doctor told me it’s tinnitus. And it should eventually go away. But it wasn’t tinnitus. I started hearing music. I didn’t realize it for a while, though.I told someone at a funeral that it’s really disrespectful whoever is playing rap music on their phone, and they gave me a quizzical look. And I told my friends that it’s really weird that it’s still winter and there’s an ice cream truck going around, and they both said they didn’t hear it. I finally realized that I was having full blown auditory hallucinations when I heard a distant song playing with lyrics that I had made up a long time ago….it was pretty trippy, and I thought it was rather cool that I could hear stuff, so I just kept taking it. The music eventually turned really demonic and I’d start hearing my own voice say things that I’ve never said, and it got too weird. I eventually experienced psychosis, and I realized I need to quit this shit because it felt straight up like my body was possessed. J and J, the creators of topamax do not like it when people say this stuff about their product and tend to have negative posts about the side effects removed. Sketchy stuff.