HPPD – Hallucinogen Persisting Perception Disorder

Emma is really a puzzle to all the professionals who have been treating her.  She used to go to free clinics in Las Vegas for free clinical appointments and free drugs that treated schizophrenia (one very irresponsible psychiatrist changed up her Zyprexa with Saphris suddenly just because he did not have a supply of Zyprexa with him during her visit).  She also used to see a very nice female psychologist who would call me from time to time if she thought I needed an update on Emma’s condition.

Emma has been on a roller coaster ride of emotional and mental instability.  At the beginning of last year, she had a congruence, a perfect storm of messing it all up by doing Ecstacy 7 times, having a Mirena IUD inserted (hormone releasing), having her Zyprexa switched out to Saphris which led to being admitted to a hospital because of thoughts of suicide and hurting others, and some financial headaches due to spending vicariously on income that was declining.

We brought her home to be with us this year after she called to say “I don’t think I can survive, I think I want to kill myself and end it all.”  That statement is a mother’s nightmare.

Once, home, she was actually fine – she was safe, she felt happy, she had a few complaints, but overall, she functioned okay, doing errands for us, occasionally cooking, and making herself helpful because she said she really appreciated us letting her come home.  She was of the mindset that she just needed to find the right drug balance for schizophrenia and she would be going back to Vegas to live her life independently again.

One of her complaints was that colors did not seem to be as bright or pretty like it normally was, and she would say that the sun was too bright when we were outside.  Her vision was blurry so she saw an optomologist who prescribed glasses for her because she had developed astigmatism.  He had no answers for her about why colors were not as bright or why the sun seemed too bright.

Another of her complaints was that sounds seemed amplified to her.  Everything was too loud.  Each time she heard a siren from an emergency vehicle, she would say that it sounded scary.

As time progressed, and our weekly visits to Dr. G, the psychiatrist, resulted in constant changes and trials in her prescription medications for schizophrenia, Emma got worse.  She was getting more paranoid, talking more and more about how lights (even house lights now) were too bright and hurt her eyes, and sounds were becoming distorted and evil sounding.

Emma was on Geodon 40/40 mg (morning and evening) without effect, and Dr G was thinking to up that higher and higher since the recommended dose was quite high.  He admitted that she was a “puzzle”  to him.  She has been through several, almost all of the modern common anti-psychotic medications and she either has a bad reaction or no reaction to them, and her symptoms and depression have gotten worse or stayed the same.

Perhaps, he is now thinking, she doesn’t have schizophrenia, but maybe she is Bipolar, or a combination of Bipolar and schizophrenia.

She was given a prescription to treat Bipolar Disorder (while tapering off Emma’s Geodon to 20 mg in the morning and 20 mg in the evening) – Seroquel XR 150 mg in the evening.  A few minutes after taking it the first evening, Emma started to get panicked and told us to take her to the emergency room so they could admit her into the mental ward.  She said she wanted to hurt people, she wanted to hurt us.  We assured her that she wouldn’t hurt us and that it was good that she had the will power to not do what was wrong as well as to know that it was wrong.  She went to bed without any other incident and in the morning was better, but still a bit shaken by how she felt the night before.

On the second evening of taking Seroquel with 20/20mg of Geodon, Emma had an almost crazed look at the dining table and said she wants to smash her head into the glass plate and she felt as if she would do something really bad.  It took some time to calm her down, and the next day Dr. G agreed to her discontinuing Seroquel.  (even if he didn’t agree, I would have stopped Emma from taking it.)

Although Emma was deteriorating in her senses of lights and sounds bothering her and distorting, as well as people’s faces changing as she looked at them, the Seroquel incident made her level of anxiety rise substantially.  It was very difficult seeing her go from bad to worse to even worser.  I thought she had already hit bottom, and would bounce back, but a new lower low was getting reached.

We saw a top neurologist who did an EEG (nothing was found that indicated any brain damage).  His theory was that she was not schizophrenic, and that her problems may be caused by Status Migrainosus (a big word for a migraine headache that last longer than 72 hours) since she complains of having headaches all the time.  He prescribed Topiramate 50 mg twice a day, which will be increased weekly until she is taking 150 mg, twice a day.

As this is going on, Emma’s newest psychologist, Dr. K, decided to do some research on Emma’s symptoms, because she was also a puzzle to him.  It doesn’t help that she doesn’t seem to pay attention to what is being said or asked but instead will ask repeatedly what is wrong with her, or make statements such as “I wish I didn’t do the Ecstasy on top of the Zyprexa.”  However, Dr. K is so very patient, and excellent listener, and a very nice gentle young man that makes Emma feel safe and comfortable.

During her 3rd visit to him, he wanted to speak to me in front of Emma.  At that meeting, he revealed that he found a possible disorder that fit Emma’s visual and auditory symptoms very closely.

“HPPD” he said, “Hallucinogen Persisting Perception Disorder.”

Most of the cases that were on file were of people that had done LSD or some other hallucinatory drug, but there were some cases with MDMA (Ecstacy) use.  Ecstacy is sometimes called a dirty drug because it can be mixed with other chemicals.  The result of using those drugs is vision carryover from the “trip”, and different people have different results.  There are not as much information out there about HPPD and Ecstacy.

Emma’s experience with Ecstacy last year were bad experiences – her entire body felt like it was on fire, her skin felt like it was burning.  Lights and sounds were way too loud and she had a very difficult time driving home because nothing looked normal.  Everyone looked scary to her – their faces were morphing and looking cartoon like or evil.

HPPD (if this is what she has) did not come on for her right away.  Her vision and hearing were acute, but not to the point of being bizarre.  She was functioning almost like normal after her first bad trip on Ecstacy last year (and stupidly even the next 6 junk trips she had on Ecstacy in the following days).  It did not give her a high – not like the Ecstacy that she had taken 10 years prior in high school (as her mother I am only now finding out about her 20+ episodes on Ecstacy while she was living with us).  10 years ago she said it was the best trips she ever had.  [10 years ago, as a clueless mother of a self centered party animal daughter, I wanted her out of our lives and living independently.]

What Emma had 4 months ago was a fear of the sound of ambulances and emergency vehicles.  She would say that it sounds scary.  Just that.  She would be able to handle the sound and she would just comment, “Oh, ambulance.  Sounds scary.”

Slowly, over the weeks since she has been home, she would be able to hear sirens that were far away and barely audible.  She would hear them and say that they were super loud, scary, sounding evil.  Now airplanes’ drone sounds super loud and evil to her.  Children laughing freak her out too.  A look of terror and dumbness would come over her face and her hands would go limp as she focused on the sounds that were terrifying her.

She complained about the sun being too bright when she first got home this year.  It has since progressed to where even the lights in the house are too bright and hurting her eyes.  Even the television screen is too bright and we have it on the dimmest setting.  Sometimes we eat around the dining table with the lights off to appease her.  It’s not as romantic as it sounds – I like eating and being able to see what I am forking.

She needs to be constantly reminded to put on her sunglasses, and we have ordered sound cancelling head phones for her ears as well as a white noise machine for her bedroom.

In a way, I do hope that it is HPPD.  At least that would give a name to her sickness.

However, she does not believe it to be HPPD.  She continues in her litany of having permanently damaged her brain with Ecstacy and Zyprexa.  The more I learn about HPPD, the more I believe she has something very close to it – though I haven’t heard of any cases that hyper-hearing, sensitivity that Emma has.  When it is an especially noisy day, Emma tends to be worse and more agitated at night.  Thankfully, she is able to sleep, though she says she wakes up at 3 am and is not able to go back to sleep.

Because she does not believe it to be HPPD and thinks that she is permanently damaged.  One of the recommendations for HPPD is to take Keppra.  Dr. G gave Emma a prescription for it, but she refuses to take it.  Frustration sets in with her doctors and with us, because she thinks there is no hope.  Sometimes I feel there is no hope also.

Google search “HPPD” and you will find quite a lot of blogs about it.  One, of particular pathos, is of a young man named Austin who has video taped testimonies about his HPPD and how it has affected him.  This young man did this in the hopes that it would help others out there, and it has helped me.  He goes by the YouTube name of indigochild811.  Here is his first video:

Emma refuses to believe that she may have this disorder.  She says that she has permanent brain damage from Ecstasy.  She keeps saying that she wishes she hadn’t taken Ecstasy.  It is like a broken record.  She believes there is nothing that can help her.  If that is what she continues to believe, then she will remain damaged, in her own mind.  Frustrating.