Go Ask Alice

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)

Go Ask Alice

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

Alice

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!

RxISK Patient Narratives link Topamax & hallucinations

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.

Treatment of Migraines

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.

Reporting to RxISK

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.


RxISK: Research and report prescription drug side effects on RxISK.org.

Search. Report. Contribute.


You and your meds. Give the real story. Get the real story.

Pharmageddon

Pharmaceutical companies have hijacked healthcare in America, and the results are life-threatening.

 

Dr. David Healy documents a riveting and terrifying story that affects us all.

 

University of California Press (2012)

 

Available on Amazon.com

 

Comments

  1. Michael says:

    Healy, why is it that even patients that have been dealing with the mental health industry don’t think the side that you discuss holds any credibility? I am a member on 2 depression forums and when it is brought up every now and then that a certain Med someone took ruined their life, they’re told they’re mistaken by others on the forum ( to put it lightly). They talk of others that aren’t dealing with a mental illness, that they have no empathy. Yet when someone comes along and shares a life story that discredits the apparent greatness of Eli Lilly or any other drug company, they believe this is best ignored.

    Im not meaning to sound rude, but the closest thing I can relate it to is how some cling to their religion. They are unaccepting of opposing views.

    As you state, yes,these drugs have saved lives, but they’ve also ruined lives. And I believe both sides need to be revealed equally. The best decision is an informed decision, especially when it comes to deciding whether or not to do amateur work on the most complicated thing in the universe (the brain) with a man made pill that works based on a weak hypothesis.

    But depression forums are hardly anything more than a personalized version of WebMD, and its really quite sad.

  2. Anne-Marie says:

    Because of my own experience with the side effects of SSRIS landing me up in the criminal justice system, I thought It would important to tell my story on one of the websites that helps ex offenders only to be told that my comment was dangerous. I really couldn’t believe they refused to let me tell my story to help other possible sufferers of SSRIS. I wish someone had come to me when I was having my problems and told me it may be my medication as it would have saved me from several more years of suffering. I was also told I was in denial of alcoholism in an AA meeting because I told them I thought it was the medication making me alcoholic and I would benefit more from the meetings if I accepted my illness. It seems to me that people suffering from SSRI side effects apart from the common side effects like withdrawal are basically on their own when it comes to forums. Maybe a new one needs to be set up for this purpose.

  3. One of the first forums, to discuss ssri withdrawal, was around 2003.
    It was Social Audit and I came across it when, at the time, I was looking around the internet for anything at all to do with Seroxat.

    This forum went on for years and I became addicted to it.

    I used to sit in my village post office, who had a public computer and read about the misery and havoc ssris had caused thousands of people from all over the world.

    From Social Audit, which sadly ceased, a whole world wide network of forums, blogs, ssri stories started and it was not long before I realised there was a whole world suffering irrevocable harm, produced by pharmaceutical companies developing ssris, which were ruining peoples lives.

    As the comments said above. There are a lot of people thankful they received an ssri. It saved their lives, they said. It saved them from facing up to reality and moving on. It saved them from taking more appropriate action than taking a pill.

    It is their little helper and either I am being naïve or I am being honest, when I say that little helpers might have caused thousands not to face up to reality or little helpers might have caused something a whole lost worse.

    Social Audit was the best thing since sliced bread.

    Alone, in my post office, wondering why Seroxat has crucifying properties managed to turn my head back to real life – I was not alone with this.

    The year before, I could not even enter my village post office. I was so scared and so disabled from Seroxat withdrawal, I stood outside trembling, quaking, terrified, sweating, acutely anxious, hyperventilating and a complete and utter mess. It was not long after, that all my friendly neighbours were doing all my shopping and life collapsed in a heap of Seroxat withdrawal.

    So, the forums began and we all know now from all the heart breaking posts how all these thousands of people were trying to get their off their own particular ssri, down to the last few ml. and quaking, starting to up their doses and not getting
    better, reducing again and reduced to palpable wrecks.

    We know the score now from all these forums. They are brilliant and was seemingly the only way to find any hope as it was not us, alone, it was thousands upon thousand of us.

    And the answer is…..sue the socks of all the pharmaceutical companies because without doing that, all the forums in the world are not going to address what they have done – created a monster…..we know that now…..

    Forums saved us from farmapsychology. The farms produce the manure and the public eat it and until they realise what they are digesting, the world spin on ssris will continue unabated and not debated…….

    Basically, what I am saying is don’t accept the that any ssri saved anybody’s life, if they want to believe that, then more fool them…suckers to pseudo science and they will never get it because their doctor and their prescriber said so

    End of story…… or start of story….?

Leave a Comment

*