LarryC

I had a neuroSPECT scan which showed low blood diffusion in the brain. They did a second scan with an injection of Acetazolamide. All brain blood flow was normal. The test was to determine which area(s) would not respond. After the results were seen by mt neurologist and sh talked to the hospital about the results she presribed Acetazolamide. It did not do anything for visuals though.

I am fairly certain that trauma to my neck during a hike caused my relapse of HPPD. More symptoms came over time and the worst are ones I never had. The first started right after the hike.

I have read the site thosewithvisualsnow and some can relate the cause to neck proplems,

On the previous site hppdonline there were several posts on the trials on Keppra. Too bad they are o longer available. My take is that less than 1 out of 5 benefitted in any way. Of course, there was the tolarance issue with many.

Didn't know is was mildly SNRI ... so here is one that doesn't kill me [ "it can decrease the seizure threshold" ] - Effexor about killed me. Perhaps the opiate activity

Dr Abraham told my neuro that norepinephrine reuptake inhibitors are contra indicated for HPPD

On the thosewithvisualsnow someone used a short treatment of prednisone and it eliminated her visual snow for a long time.

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>

Jay, I'm 58 and forgetting things I am about to do has happened for quite a few years. You are much younger though it is not necessarily from HPPD. This stuff just happens.

That picture I am talking about is almost just like my static has become in a darkened room, with a bit of artificial light. Since my static has got worse I really would like to have that to explain it to a doc. See, all my symptoms were virtually gone for years. They came back after going on a strenuous hike. They came over time and the one thing I never had was static but after the hike, the static started slowly after a year from the hike and has got worse since. So I seem to have HPPD plus some other malady. Any images that people have are appreciated. My email is larrycalella@yahoo.com

Seems my message was never opened by MaggyTito to date.

Thanks all,

Larry

Hello All. I need assitance from anyon who was on the previous hppdonline forum. The one time active member MaggyTito (I think she went by MaggieTito then) had posted a picture of a dark room, not pitch black, possibly with a tv on. One side was Normal vision and the right side was th same picture as is seen by some people with HPPD. I wanted to show that to a neuro opthalmologist in my new living city. It is not here as we have lost much information. I have sent her a message but have not heard from her. She has only posted once on this newer site.

Appreciated any help on this.

Your speaking problems may be related to the vertigo. Vertigo is not a symptom of HPPD that I know of. Even if it is it is something to check out with a doctor. Your doc will not need to know about hppd. The vertigo and speaking issue is enought for him to send you for tests and to specialist. Vertigo is often an inner ear problem. Do have that checked out.

The onset of symptoms has no definite timetable. If you have/had some other disorder after some time it may have triggered the symptoms. I had periods of alleviation and then return. I had a recurrance of symptoms that lasted a 2-3 year period. Then I had minimal symptoms for 18 years. After a hike where I strained my whole body and jerked my neck over and over again I had a recurrance of symptoms that got worse over time with more symptoms being added over time that I never had before. This is a mysterious and complicated malady.

Take care of your physical health the best as possible.And emotional health even more so. You may find that the symptoms reduce to an amazing extent.

Quality is also an issue. In USA, the supplement was banned because of causing deaths due to poor quality by the manufacturers. (Yes, another lesson about quality). A couple interesting links

I remember the ban. As I recall the manufacturer skipped some of the purification process and the supplement had a toxic effect on several people. Parkinson like symptoms (did not read the links) As a Chemical Engineer and working with the FDA, this was a big oversight.

When I took Tryptophan at that time, I was generally normal to begin with and the supplement calmed me very well. Now it does not have a positive effect. Either due to my symptoms of possible because the supplement is now pharmacuetical grade for safety reasons. Sometimes a bit of so called impurities (non toxic of coursed) improves the effectiveness.

Tinnitus also did not start for me at the time the visuals started. The visuals increased in type over time. Then the tinnitus started in the left ear one evening. Then eventually the right started. The left is louder and it is very loud now. Disturbing. DEoc said I should have an MRI to see if there is some growth there since it is predominent on one side. A small percentage of people who have it on one side mostly have a benign growth. But these docs don't know about hppd.

I posted a link, where a recent theory of tinnitus says the cause is as the the same science as hppd. This is interesting since hppdrs often have tinitus And also the treatments, gaba agonists, the same as for hppd - klonopin. The additional type of treatment were meds that worked as antagonist to the stimulation chemical (don't rememberthe chimical in the brain). Look for my posts. Don't have that many.

That visual thing is very interesting when it comes to serotonin and dopamine. Since i started my keto-diet everything became much better. Carbohydrates are important in the process of transporting 5-HTP to the brain which increases the serotonin (i am no neurologist so i do not know the exact action).

When i took a step from my diet and ate 200 grams of 85% cocoa chocolate which contains high contents of 5-HTP and sugar i got visual snow that was so bad i wanted to hit the air. While taking dopamine agonist my visual processing is soooooo much better, i do not "lag", iike i am moving from one object to another but i got a smooth over-all vision, no trails, after images etc. Also i feel a LOT better in my body so its a perceptual thing i guess.

From wiki: "In addition clonazepam decreases the utilization of 5-HT (serotonin) by neurons..." Guess this is why clonazepam is the most effective benzo.

I thought the keppra and clonozapan were the reasons for your visual improvement.

Did you ever have static or phosphen like static?

Also, I read somewhere on here about LarryC I believe who took a beta blocker and it made him see static. Could a Beta blocker... or going off of one caused this for me? It was propanolol.

Thanks!

CMM, The actual statement I made was that Dr. Abraham told me that beta blockers were contra indicated in HPPD. My visuals which were there already since 2003, were worse since I was taking a beta blocker blood pressure medication starting in November last year. But also there were other possible causes. I stopped taking the beta blocker med a month or so ago but no improvement.

I believe also that I said that when I first took toporol(a beta blocker bp med) in 2004, I woke up with static. This true. I think I had just started taking it. It may have caused the static/phospenes to start but I can not be sure. My visuals had started in 2003 after a strenuous hike and straining my neck. They started with after images. This was not the first time I had hppd symptoms but the other times they subsided eventually. My vision in 2003 became worse over time. In 2004 at end of summer, my doc put me on the second bp med, toporol because the one bp med was not controlling my bp. I woke up with the static which got worse over time. It could have been the beta blocker. But I eventually stopped that in 2005. No improvement. Don't know what the cause or if it is reversable at this point. The thing is that when my hppd symptoms returned in 2003 after the strenuous hike, I developed high blood pressure. Never had that my whole life. And even when my weight had gone up a great amount before this al happened.

The other times I had hppd visuals, they lasted about 2 + years each time and I never had static those times. Only vaying degrees of afterimages and trails.

There are a few substances that each have different methods allowing a researcher to essentially "hone" in on an area of a circuit that is improperly functioning. I have a great schematic of the brain systems, the drugs involved, and how they affect each system.

I have limited my communication with Dr. Abraham on this topic for many reasons, but did advise I would advertise that something is being researched. I will write more about this in the HPPDresearch section.

- Best to Everyone!

David

David, is this information, the drugs and mechanisms, available? I may be able to explore trials with my neurologist.

Great post David.

I would like to hear from/about someone who is taking this med as a daily medication or if Abraham even allows this.

Just wanted to add this to answer Merkan. It is not now used as a daily med. Dr. Abraham is doing a trial to gather statistical information. It is usually a one off med just for the trial. It is also not a practical drug since the effects, if work for a person, are only for 2 hours. After this trial a larger trial , more participants. Then maybe use for certain times of day for the 2 hour effect or another med that lasts longer. Don't have that information.

Ok I was just thinking strokes are pretty serious I hope you didn't have any lasting problems mate? Did the docs give you any advice for going forward? Im hoping what I had was down to the lyrica. Did you feel retarded when it happened cos I really was in a bad way mentally and physically.

I had no mental issues then. It was minor. I have had high blood pressure since the recurrance of hppd years ago. It went down then up then down. Was not being controlled by bp meds. Never had high blood pressure before that and I had gained weight befor the hppd reoccuring and had normal bp. Then lost weight and my bp was high. My doc did not want to at first give me the bp meds. But had to eventually. It did not reduce it enough so he put me on a second med. A beta blocker Coincidentally I woke up with static right after taking the second med(coincidence? probably not, see below.). I never had static my whole history of hppd with the alleviations and recurrences. I went for a treatment by chinese med doc and my bp went down and my doc took me off the beta blocker(the static did not go away over time). BP went down for a while then got worse. I evedentually needed more treatments. Then I would have severe spikes. When I would have it checked at the docs, it would only be a little high so he did not put me on a second med.

After that minor stroke, I had a medium stroke and ended in the hospital. I got alot better but not completely. I did not have slurring of speach or anything like that. Just total weakness on one side of my body. The doc in the hospital gave me a second medication and it has been under control. Great things seem to keep happening to me.

The second bp med was a beta blocker also and recently Dr.Abraham said to me that was contraindicated in hppd in passing. I believe that had contributed to my visuals getting worse this year. I have recently had my regular doctor change that med (1 1/2 monrhs ago) but my visuals have not gone back down. I have problems with television and movies now. That is what I had had the first 2 years of the recurrance but that visual got better so I could watch tv. But it all came back this year for I am not sure what reasons. There are several possibilities.

So what club am I in besides the hppd club?

Since you are young and only had that one episode, even if it was a minor stroke(symptoms are typical of that, includin the mental messed up you mention) you can be ok if you have normal blood pressure and cholesterol.

Awesome... how long till Alzheimer's im going have nothing to look forward to in old age at this rate. All the good shit is already happening.

Funny. I suspect this because it happened to me. I thought it was a med I took also or that I slept on my side all night long. Weak on my right side for days. Then it went away. No dragging though. An MRI showed that I did have the stroke. Lots of fun in life. We should start a club.

Penny, the physical symptons on one side of the body you described and the fact that you recovered sounds like you may have had a minor stroke. Those people usually recover from in a few days.

It is important to go up slowly on Lyrica. It seems to make you feel good (some people) so the temptation is to take more to feel even better. Know that that is a bad habit.

Jay, it seems that the list of meds mostly don't affect you much.

Our condition is similar in that damage is microscopic. And any ‘cure’ involves time, the ability for the brain to repair, and finding helpful techniques to encourage this repair.

This is the one of the most important statements on the site. And also the best advice.

I would not attempt a trial with Remeron. This med affects the 5ht2a receptors. Studies have been done where an anti phsychotic (risperidol?) which affected the same receptor had caused afterimages in people who did not have hppd.

Remeron is not an anti-psychotic, but rather somewhat the opposite.

Virtually every med out there has made someone sick. You have to work with your doctor and decide if the potential benefits outweigh the risks. And most negative side effects pass once you discontinue a med – again low doses reduces the chance of problems.

Never said it was an anti psychotic. Just that it affects the same receptor as the antipsychotic mentioned. Any med that affects that receptor is potentially dangerous considering the study done and the personal experiences. The result of taking that for someone with HPPD can be serious.

The risk is too great for very little possible benefits for remeron. As said, it affects the same receptor as has been shown to cause hppd symptons in those who have not taken any drugs except the meds that affect this receptor. Take seriously the incidents Merkan and I posted.

Here is the link about tinnitus and neurotransmitters

http://www.tinnitusformula.com/infocenter/articles/treatments/excito.aspx