My medication recommendations after 15 years of experience.

[Greg1838]

I want you to know it will get better. The first three years are the hardest. If you are on this forum you probably are at the point where you are considering medication. I have been lurking this forum for years and want to give back something, even if it's a small contribution.

Lamictal: I was on 200mg a day before starting Keppra. I found this medication moderately reduced visual snow and tinnitus, but had no effect on panic attacks. If those two aforementioned symptoms are your main issues I reccomend this medication.

Klonopin: I took this for 2 years at 1mg every day for 4 days then 3 days off. This medication erased panic attacks, erased tinnitus, and reduced visual snow by 60%. It dampened my memory, however, and my day job is sales accounting and I could no longer take this medication. It is also habit forming and there was one incident a year taking the medication where I had put it no mind to try using it for 2 weeks on, one week off, and this led to mild withdrawal where all my symptoms felt like they were set back to when I initially contracted HPPD. This only lasted for 3 days after this experiment in changing the medication dose.

Keppra: I am still on this medication. 1000mg twice daily. This is more sedating than lamictal the first month of titrating up, but it greatly reduces depersonalization, mildy reduces panic attacks, and aided in sleep with the second dose taken at 9pm. Mildly reduces visual snow and after images, no effect on tinnitus. This medication has a side effect of irritability, but taking a daily b6 vitamin erased this side effect (have no clue as to why, medications are strange things).

Viagabatrin: I discontinued this medication after 2 weeks. It is a GABA enzyme blocker, which reduces the breakdown of GABA in the brain. This medication gave me..tunnel vision? I could not drive for a week and had to Uber to work. This is apparantly an actual known side effect of this medication.

Tiagabine: This is a GABA reuptake inhibitor. I still take this medication. It reduces tinnitus to barely noticable levels, erased panic attacks, greatly reduced depersonalization, and very mildy reduces visual snow. It is, also, not as withdrawal intensive as the Benzodiazepine class of medications, likely because it prevents reuptake of GABA allowing more availability of GABA rather than acting directly on GABA receptors like Benzodiazepines. Because it does act on GABA, there is risk of withdrawal, but after being on this medication for 6 years and slowly reducing my dosage by a few mg, the withdrawal I experienced was mild agitation and mild anxiety, nowhere even close to klonopin. Also did not effect memory as far as I could tell compared to klonopin. Very interesting medication. 

Clonidine: I was on this for 2 weeks. I was a zombie. It worsened depersonalization, reduced panic most likely because I was sedated, but benefits did not outweigh cons at all. I was on 1mg a day divided into two doses a day. Causes night terrors. 

Naltrexone: this is an opiod antagonist. It reduced depersonalization slightly, but I felt very strange on this medication. The best way I could describe it would be a sharpness of vision in an uncomfortable way. I could not focus on work because I was agitated. 
 

Propranolol: I still take this medication, but I now take it for blood pressure (48 yrs old with bad genes lol) this medication prevents physical symptoms of panic, sweating, heart palpitations, racing heart, and because propranolol is the only class of beta blockers that crosses the blood brain barrier, it reduces noreprinephrine in the brain and has a relaxing effect. Be warned however, if your taking this for HPPD, you should most not likely go above 80mg. If you do not have high blood pressure like I do, you may pass out. Also interesting that there are clinical studies that note this medication has been used off label for veterans with PTSD that had some success in reducing painful memories in those sufferers.
 

Buspar: this did nothing for me, it works on 5HT-1A serotonin receptors to reduce anxiety. It just made me sleepy. Was on it for 6 weeks.

Risperdal: AVOID. THIS IS AN ANTIPSYCHOTIC MEDICATION THAT SENT MY HPPD INTO A LOW LEVEL LSD EXPERIENCE AND THIS LASTED FOR 2 DAYS. I TOOK OFF WORK WITH MY UNPAID TIME OFF AND IF IT LASTED LONGER I REMEMBERED CONSIDERING GOING TO THE ER OR CHECKING MYSELF INTO AN INPATIENT REHAB INSTITUTION. I TOOK ONE TABLET 8 YEARS AGO.
 

Zoloft: This is an SSRI that targets anxiety and deppresion. NOWHERE near the side effects of Risperdal, but worsened all symptoms by ~30% for a week. I took this medication for 3 days. Notice the duration that I take these medications is associated with tolerability in my case.

Sinemet: this increases dopamine availability in the brain. It is not an amphetamine or inhibitor, and only lasts about 3 hours. I found no change in symptoms, other than feeling moderately euphoric, and a bit of a horn dog like I was 17 again, of course lasting only 3 hours. Wouldn't say it was unpleasant, at all, but I don't use medications that don't alleviate my condition, and since in my case, this fell more into recreational territory, rather than aid my condition, I discontinued.

Depakote: this is an older epileptic medication, but I couldn't get passed a month with it. Mildly alleviated symptoms and moderately relieved visual snow, but I felt like the walking dead on it.

Carbamazepine: same as above.

Ketogenic Diet: this was used in the 1930s to reduce seizures and is sometimes used today. It had no effect on me other than raising my trigylcerides and cholesterol on my bi-annual physical and bloodwork and made my physician angry and told me to discontinue. I merely suggest you just eat healthy and increase your intake of vegetables.

This is a unique category of OTC medications I suggest you find alternatives to.

cough medication that contains DXM:

This will GREATLY increase depersonalization and almost gave me delirium like effects, the depersonalization was so bad. Alternative: guaifenesin (mucinex) and claritin (claritin is a histamine blocker but does not enter the brain or cross the blood brain barrier unlike other antihistamines)

Benadryl: This medication DOES cross the blood brain barrier and WILL cause depersonalization. If you are taking this for sleep aid, try extended release melatonin taken 1 hour before bed.

This category is recreational drugs.

Nicotine: A damn hard habit to quit. Will make you feel more awake in the morning with a cigarette, but you'll actually feel more tired over time. Avoid, please.

Caffeine: I can tolerate one cup in the morning, but before HPPD I could chug half a pot in a day. If I go above one cup I feel a mild sense of anxiety, not a panic attack, but I am more sensitive to caffeine having HPPD now.

Hallucinogens: You are absolutely insane and I have not touched these in 15 years after contracting HPPD.

MDMA: see above.

Alcohol: I can't touch it anymore. Makes you feel great while intoxicated, but HPPD will be worse in the morning. Some people can tolerate a beer or two a day, but you're kidding yourself if you used to reach for the hard liquor before HPPD.

Weed: I put this in the same class as hallucinogens, and if you're considering edibles, again, you're insane.

Stimulants like cocaine, adderall, amphetamine: I had an old friend I knew from the 90s that offered a small hit of coke 2 years after HPPD onset and I was so tired and depersonalized I said what the hell and gave it a shot. it gave me a panic attack. Thank fuck coke is short lasting. If these used to give you focus or  euphoria, you can forget about that.

if you're interested in hope of recovery, for me personally, my tinnitus is only noticeable at night now, but is very mild even then. It used to be so loud I could hardly hear anything. Rotating geometric shapes on walls and flat surfaces are so translucent I would have to stare at a wall for a minute straight to "find" them. Visual snow reduced my about 50%, still there but not as bothersome. Depersonalization reduced by 65%, nowadays I just have flare ups where I'll feel "out of it" like I didn't get good sleep (this is with 8hrs sleep, it just feels like you're sleep deprived and the world is foggy). Panic attacks happen about 3-4 times a year and last only about 3-4 minutes. The worst was the first 3 years.

This is a small token that I can give back to this forum, and I wish you all well, you are not alone, and there is hope it will get better over time. And even the symptoms that stick around, you can adjust to them. I have the tv at very low volume turned to something boring like the news for sleeping, to mask the mild tinnitus still sticking around. I used to this occasionally before HPPD. When I have depersonalization flare ups I've noticed it's easy to "hyper focus" on things i'm working on, because, since the world is hazy, and i'm less aware of everything around me, the little focus I have can be turned around to give you extreme focus on reading and other work because it's highly similar to being so absorbed in something that you "space out", like looking up at the clock and realizing hours have passed when you thought it had been 30 minutes, becauase you were so focused on what you were doing. I view it like that. 
 

You're going to be okay. Some of us have had this for decades. I've had it 15 years. Life does go on, I'm retiring in 14 years, and i'm doing a lot better. There are people out there like you, having the same condition as you, don't feel isolated, we all share the painful experiences, we all have our bad days, made worse by HPPD, and we all know what it's like for others around us, even our friends, to not understand what is going on your head. Everyone on this forum understands. Be well.

 

 

Edited May 23, 2021 by Greg1838
Typo

[Stve]

Hey man, my symptoms started with mdma.

 

here is my question, 

do you have any experience with Sudafed? I was doing really well, all together ignoring my symptoms, until I took that crap 3 months ago. I feel like it set me back years. Hoping I get back to my baseline soon

[Stve]

Hey man, my symptoms started with mdma.

 

here is my question, 

do you have any experience with Sudafed? I was doing really well, all together ignoring my symptoms, until I took that crap 3 months ago. I feel like it set me back years. Hoping I get back to my baseline soon

[Stve]

Hey man, I my symptoms started with mdma.

 

quick question, any experience with sudafed? I was doing really well until I took that in late March. Really struggling now and hoping to return to my baseline now

[Raymondello]

 

Thank you very much for the medical recommendations, I really appreciate it, and now I need to find out as much information as possible about these drugs that you named, because I want to start taking them in small quantities. And considering what the prices of medicines are now, I think that I will take out medical insurance one of these days so that it covers all the costs of my treatment. I also found out recently from this site -- https://www.remedigap.com/medicare-supplements/medicare-plan-n-vs-plan-g/ that there are even different types of health insurance. God, how difficult everything is in this world, but the main thing is not to give up and go forward.

Edited January 5, 2023 by Raymondello

[Lebedka]

It's important to keep in mind that everyone's experience with medication is different and what works for one person may not work for another.

[Famulenu]

Thank you for sharing your experience and providing valuable insights into these medications. It's heartening to hear that you want to give back to the community by sharing your knowledge. I'm sure this will be helpful for those who are considering medication for their condition. It's important to remember that everyone's experience is unique and it's always best to consult with a qualified healthcare professional before starting or changing any medication.

On a related note, if you're in need of health insurance and you live in the Portland area, I highly recommend seeking out a health insurance broker portland. They can help you navigate the often confusing world of health insurance and find a plan that meets your specific needs.

Edited February 17, 2023 by Famulenu

[Hall89]

Good thread mate! So if i got it right, you're on Keppra, Tiagabine and Propranolol? Have your VS actually reduced by 50%? It's not that you just have gotten used to it after all these years?

[JH Psychedelic]

we would greatly appreciate your feedback in our survey that includes quite a lot on treatment options!

 

Info below:

 

Researchers at Johns Hopkins are conducting a survey to better understand the experiences of people with HPPD (Hallucinogen Persisting Perception Disorder). HPPD is a condition where people who have used hallucinogenic drugs experience ongoing visual disturbances, such as seeing halos around objects or seeing colors more vividly. This survey will ask about risk factors, symptoms, treatment experiences, and how HPPD has impacted your life. Your participation in this research study can help improve our understanding of HPPD and lead to better treatment options for those who are affected by it.

www.HopkinsPsychedelic.org/hppdsurvey

Protocol: IRB00384491, Principal Investigator: Natalie Gukasyan, M.D.

[Spartan]

You say "it does get better" 

I'm sorry but this is not the case for everyone. 

I dont have time to read the whole thing, though I'm sure it's a great post. 

[AF44]

Great post!!! I have had HPPD for about 25 years. I started on clonazepam in 2009 and am still on it every day, 3 mg per day. Had some therapist years ago that was convinced I had bipolar disorder based upon nothing but a weird reaction to Prozac (which I tried for depression but it just made me feel weird so I stopped taking it after a few days.) This whole “bipolar” thing snowballed and now I’m on Depakote, Lamictal, Zoloft, Buspar, and Wellbutrin (in addition to the clonazepam.) I’m pretty damn sure I was misdiagnosed but no one believes me (haha, because I’m crazy and in denial.) I’ve had so many different medications thrown at me it’s ridiculous. Honestly I’m pretty sure I had/have Borderline Personality Disorder, definitely PTSD and GAD, and throw in the HPPD and I guess it was just assumed I suffer from bipolar disorder. It’s really aggravating.

[robbie123]

Hey great post . I've had HPPD since 1980, 44 years give or take, been on many medications and here is my take on the condition (Don't rate it as an illness more a physical condition) For me its always been quite a painful condition Headaches ,Head pressure and fatigue and general lethargy, I think the condition puts pressure on our visual system and tires out the brain and causes headaches etc . So its a really difficult condition to deal with and the visuals give you a constant reminder of the mistake you made all those years ago, Don't be hard on yourself the vast majority of people will try illegal drugs so don't blame yourself.

What we do know now is that HPPD is not a mental illness , It may cause depression and anxiety and you will go through stages when you notice HPPD and you obsess over it ,its times of HPPD focus that will be your worst times and your best times will be when you absolutely forget about it and get on with your life ,Like any obsession it can be so destructive and that can affect your life very negatively , The best times throughout my life is when I was living and HPPD faded into the background , The worst times were when i focused on HPPD looking for a cure looking for a medication.

You will do so much better if you just accept you have a condition that has heightened your visual system and just get on with life .

Medication wise the only medication that has made any difference is Diazepam and Klonopin Muscle relaxers and really on a as required basis and opiates like dihydrocodeine can make you feel better and lift your mood . 

I exercise daily and eat healthy after being diagnosed with celiac disease and can honestly say that exercise and eating healthy has been the best medicine, and staying busy and not obsessing over something I cant change. 

On the positive side HPPD stopped me taking drugs immediately and kept me on the straight and narrow, So maybe dodged a bullet getting HPPD

but its been hard at times ,But hey what isn't ? live is hard in general ,Nothing is easy, I have read recently about people with HPPD micro dosing and curing HPPD and its interesting for sure but I would be cautious believing anything you read online and that relates to wonder cure supplements that doing absolutely and cost a fortune, HPPD does reduce over the years with certain symptoms like after image and strobing , When I first contracted HPPD putting a light on in the morning was pure after image for about an hour, Couldnt play pool or snooker without balls floating everywhere, That has reduced by around 90% ,Static has stayed the same ,Tinnitus stayed the same and aggravated by covid vaccination . 

I'm pretty sure now HPPD isn't going away after 44 years, Nothing I can do to change it, And not sure I care that much anymore , Only the headaches and head pressure are a pain in the ass and had the biggest negative effect on my life. I consider myself lucky that I didn't end up with a mental illness and a basket case like so many or dead through drug abuse .

HPPD can throughout your life spike up and down and it doesn't take much to rattle it , Certain medications, alcohol ,or stress can make ripples in the HPPD pond and you just need to understand what rattles it and avoid .

Good luck guys ,Stay healthy and get living. HPPD shouldn't stop you doing anything ,Stay positive .

Best Wishes Robbie 

Stay Busy ,Stay 

[Hall89]

On 1/18/2024 at 4:50 PM, robbie123 said:

Hey great post . I've had HPPD since 1980, 44 years give or take, been on many medications and here is my take on the condition (Don't rate it as an illness more a physical condition) For me its always been quite a painful condition Headaches ,Head pressure and fatigue and general lethargy, I think the condition puts pressure on our visual system and tires out the brain and causes headaches etc . So its a really difficult condition to deal with and the visuals give you a constant reminder of the mistake you made all those years ago, Don't be hard on yourself the vast majority of people will try illegal drugs so don't blame yourself.

What we do know now is that HPPD is not a mental illness , It may cause depression and anxiety and you will go through stages when you notice HPPD and you obsess over it ,its times of HPPD focus that will be your worst times and your best times will be when you absolutely forget about it and get on with your life ,Like any obsession it can be so destructive and that can affect your life very negatively , The best times throughout my life is when I was living and HPPD faded into the background , The worst times were when i focused on HPPD looking for a cure looking for a medication.

You will do so much better if you just accept you have a condition that has heightened your visual system and just get on with life .

Medication wise the only medication that has made any difference is Diazepam and Klonopin Muscle relaxers and really on a as required basis and opiates like dihydrocodeine can make you feel better and lift your mood . 

I exercise daily and eat healthy after being diagnosed with celiac disease and can honestly say that exercise and eating healthy has been the best medicine, and staying busy and not obsessing over something I cant change. 

On the positive side HPPD stopped me taking drugs immediately and kept me on the straight and narrow, So maybe dodged a bullet getting HPPD

but its been hard at times ,But hey what isn't ? live is hard in general ,Nothing is easy, I have read recently about people with HPPD micro dosing and curing HPPD and its interesting for sure but I would be cautious believing anything you read online and that relates to wonder cure supplements that doing absolutely and cost a fortune, HPPD does reduce over the years with certain symptoms like after image and strobing , When I first contracted HPPD putting a light on in the morning was pure after image for about an hour, Couldnt play pool or snooker without balls floating everywhere, That has reduced by around 90% ,Static has stayed the same ,Tinnitus stayed the same and aggravated by covid vaccination . 

I'm pretty sure now HPPD isn't going away after 44 years, Nothing I can do to change it, And not sure I care that much anymore , Only the headaches and head pressure are a pain in the ass and had the biggest negative effect on my life. I consider myself lucky that I didn't end up with a mental illness and a basket case like so many or dead through drug abuse .

HPPD can throughout your life spike up and down and it doesn't take much to rattle it , Certain medications, alcohol ,or stress can make ripples in the HPPD pond and you just need to understand what rattles it and avoid .

Good luck guys ,Stay healthy and get living. HPPD shouldn't stop you doing anything ,Stay positive .

Best Wishes Robbie 

Stay Busy ,Stay 

You didn't get derealization, depersonalization, decreased cognition, or as it says in the litterature: "acquired dyslexia and a not withstanding normal intelligence" with your HPPD right? Also, the constant uncontrollable anxiety and most of the visuals? For us that got all of this, there's no "not thinking about it", it's impossible, because the dpdr and anxiety is so crippling and robs you of pretty much all quality of life.