Old timer. Want to tell my story

[LarryC]

I am an old timer of this site because I was on the previous site for a few years before tis newest site started.

Subject: My personal history of HPPD

I am writing this personal history with HPPD because I believe it may be unique among the experiences of the community of people with HPPD as shared on the hppdonline forum.

I took LSD one time only. It was 1975. I was 20 years old. It was an amount that people consider a normal amount, a tab. I took it at a party with friends who had also taken the drug that evening. The effects at the beginning were a pleasant giddiness. That wore off quickly. I think partly because of the party noise. I did not see anything other than objects shimmering for a while which also faded away. I could be considered “high” though for the rest of the evening possibly enhanced also because of drinking some wine and beer.

Afterward I had a long walk home and experienced anxiety about some thoughts in my mind. I had a tendency towards worry and anxiety in general. Other than that there were no discernible affects from the LSD. I arrived home and soon went to sleep.

The next day I seemed fine. No residual effects physically or mentally.

A couple of weeks later, in the evening, I was laying down on my bed watching TV in my room and the only light was from the TV. I had one knee up. I then dropped my knee to straighten my leg. What I saw was a transparent image of my knee and leg stay in the place where it originally was and then the image move in the same path as my leg had and caught up to my actual leg. This was the beginning of my visuals. I would then see after images and lights that move past me (white light bulbs mostly) would stretch out leaving like a V shape and then disappeared. I also had trails on LED lights and some ringing in the ears at times. I did not have any static or any other visual disturbances. I would say it was mild hppd symptoms at that time.

It reduced over time. I realized that if I had smoked any marijuana, the visuals would increase several fold for a few days. I therefore had avoided marijuana. I never really smoked much marijuana before the hppd anyway.

In about 2 ½ years the symptoms reduced to an unnoticeable level for the most part. Though I did see things like if I looked across the room quickly a small red light on my stereo would jump with my vision and quickly disappear. But for the most part, I was almost “normal”

This lasted for a few years.

Seven years from the time I took LSD, now 1982 (about 4 1/2 years after the symptoms mostly went away), I woke up one morning with very bad visuals. The moment I woke up I opened my eyes and everything in my visual field did not even look real to an extent. I went to work and looking at the ground, the leaves smeared as I walked passed them. My visuals were intense afterimages, trails, the effect like my knee as explained above. It was so bad for me that it sometimes made me feel like I was going crazy. It certainly was depressing.

I tried to find the cause of this. What could I have done that could have caused this relapse and multiplied the effects many times over?

I first thought it might be the very little marijuana I puffed on a few evenings before at a concert. I actually had only two totes(puffs), and it was days before, maybe even a week. I was under much stress at that time as some incidents were experience at that time.

I had every type of test done and they were all negative. I went to a neuro ophthalmologist who had no idea, so he attributed it just being psychological even though I explained the LSD effect from the very beginning. There was no literature readily available to me at the time and I knew nothing of possible treatment with benzodiazipanes .

To make this short, the symptoms were there at different levels for another 2 ½ – 3 years. They reduced the last few months to where they were almost unnoticeable as the first time but just a little more noticeable under certain lighting conditions, but nothing at all that disturbed me.

I was virtually free of HPPD symptoms for the next 18 years.

Stepping forward to 2003. I had been hiking with a friend once a week for a few months. He wanted to hike further and harder as he improved from the first time I took him hiking. Had been hiking for months before he joined me but the most I did was medium hikes. I have fibromyalgia as diagnosed by a rheumatologist.

One day around May 2003, we went on a mountain. We were going to hike a short distance and then go have a drink. We happened to find a path up the mountain and kept going to see where it would take us. I wanted to turn around but was talked into continuing. When we finally reached the top I was very tired and in pain and tension. Hardly could hold my neck up. We went down the mountain but seemed to go down a water drain instead of a real hiking path. I mention this because the “path” was narrow and rocky. I stepped from one rock to the other. I stumbled a lot and jerked my neck often.

When we finally got down to the car and to a restaurant I was in much pain and physically tense. Additionally my friend got very nasty after having a drink. I was then angry. I was like this, pain, tension and anger for the next few days at home.

One day I was leaving my apartment and my eyes passed the oven/stove LED light on my way out. I noticed trails with the these lights. Something I had not seen in almost 2 decades. I soon saw afterimages. Weeks and months went by and the afterimages got worse. Also light sensitivity/retention was experience. For example, I got up in the morning and looked out the blinds on a cloudy day. The white light stayed with me. I also started to get a strobe like effect when I did things like that. I would retain the white light and when I closed my eyes the light would blink on and off.

I thought at this time 2003, there must be more information on this condition available. I stumbled on the DSM and Dr. Abraham's work. I also found out about klonopin. I went to my doctor and gave him some material to read. Although he did not think I had hppd, he prescribed 1.5 mg of klonopin (.5mg 3x per day). There is one note, When I went to my doctor I had high blood pressure. I had never had high blood pressure before and my doctor, who I went to have regular check ups thought was curious as I had lost some of my excess weight I had at the time. I went back every month for checks as he did not want to prescribe blood pressure medication if could be avoided. As my bp did not go to normal, he prescribed one type of bp medication. With time and check ups, my bp was still elevated so eventually he prescribed a second bp medication(a beta blocker). My bp was still a bit above normal.

The klonopin did not reduce my afterimages at all. My doctor referred me to a neurologist. I had to explain the symptoms and gave her the information also. She was not crazy about the klonopin and wanted me to wean off of it. She prescribed Lamictal. I went up slowly to the max dose. This was in 2004 now more than a year after the onset of the symptoms. The Lamictal did nothing for me.

The day I had an appointment with that neurologist, I woke up in the morning and the dimly lit room had all specs of light in my field of vision. I wondered what was happening. I told this neurologist that the lamictal did nothing for my visuals and she had told me to stop and there was nothing more she could do. I told her about the new symptoms and she did not comment.

I wondered if the lamictal had something to do with the development of the static. Or the combination of the lamictal, the two bp medications (the second I had just started recent to this event) and a ¼ of a muscle relaxer I took the night before.

In any case, symptoms had added over a year after they began, so it was curious besides being a concern and depressing.

As time went on, I started to see something like black cobwebs on white walls, a bit of vibration on the walls. The vibrations continued to increase and my whole field of vision had micro vibrations in the daytime. At night was a kind of static and also phosphenes. It is not hard to imagine how concerned and somewhat panicky I was then. Just seemed to get worse. I went to another neurologist that did every test possible. I had gave her all the information on HPPD that I collected since the beginning of all this but she wanted to rule all other things out first. She eventually consulted with Dr. Abraham on the phone and faxes. He recommended that I try 3.0 mg of klonopin per day. I did and gave it a chance but there was no change. The vibrations were there, the static and phosphenes as well as the afterimages. It should be noted that I never had anything like static the first two bouts with HPPD. Darkness was pretty much just black. Nothing like my whole field of vision in vibration had ever been experienced in the past. Dr. tried sending me to many different specialist. Nothing more as far as treatment was available.

As I had said this was near the end of 2004. Nothing had changed until 2006. One evening I was sitting in my living room and my left ear started ringing. This has been constant since then. It has increased over time and my right ear also has tinnitus but not as noticeable. I have all these symptoms to this day. I had tried Keppra, clonodine, klonopin (again) and nothing has changed the degree of my symptoms.

I find that this is an experience of HPPD that I have not heard from all the other people I have met virtually with HPPD.

I am open to new treatments if they were available.

I want to end with a note that my Dr. (neurologist) believes I may have HPPD + though the + is an unknown. Dr. Abraham thinks I may have HPPD with some other co morbid condition. But if this is the case, no test showed anything other than a qEEG which showed the classic results of HPPD. I have had MRI's MRA's, Neuro Spect scan, and many blood tests.

I also had visited a neuro ophthalmologist who thought it was not HPPD but acephalegic migraine/ocular migraine. I realize that the symptoms are some that I never had before but that they are very common in people with severe HPPD>

[myrslingerbult]

Thank you for your story, I read everything. And yes, you're indeed an old timer. I'm on my phone now so I cannot write the long answer that you deserve. I agree that your story differ when compared to the average HPPD story, but because of the stereotypical symptoms there's no doubt that you have HPPD. Your development of the symptoms was extremely long, but HPPD is a stangre thing on its own and there's little research about it.

I admire your ability to fight the disorder for such a long a long time. I've only had it for one year and it has totally destroyed my life. Thank you again for sharing your story.

Myrslingerbult