AF44

It seemed at first like it was making my symptoms a little worse in the morning but now I don’t notice that at all. I swear I think I’m addicted to it. I know I’m only supposed to take it a few weeks at a time but it puts me to sleep so fast and keeps me asleep that I take one every night. I wonder what would happen if I stopped taking it now…probably insomnia?

Anytime I get a virus my HPPD gets worse, especially the visuals. I used to get scared wondering why I was having a flare, then noticed it would happen when I got sick. So I don’t even really worry about that now because once the virus goes away, my HPPD goes back to “normal.” Or I guess I should say baseline. Oh another question, does your (or anyone here) HPPD flare up when they hit their head really hard?

I think brake was being tongue-in-cheek when he said that. This shit isn’t funny, but sometimes you have to laugh a little or you’ll lose your mind for real

Hello, Don’t give up hope. I’ve had HPPD since about 20 and I am now 45. At first the DP/DR was so bad it was worse than the visual stuff. As time went on, it lessened but I would still get it, not quite as intense though. Medication-wise, I have been taking Klonopin for about 14 years which pretty much took a ton of my symptoms away, especially the DP/DR. However, I honestly don’t recommend trying to be on it. On this forum I was touting it because it was a miracle drug when it came to the HPPD. But now I’m wary about encouraging people to try it. I think I was excited to tell everyone here that the Klonopin worked really well. I had good intentions, but didn’t really think it through. For one, since it is a controlled substance, it is really hard to get a script for it. If someone will prescribe it, they will usually only give you a small amount. It was different back then. (Back in “my day” haha, I’m old!) A neurologist who was really skeptical that HPPD was a real thing was willing to put his doubts aside enough to Rx me Klonopin to take daily. I received it through my primary care dr every 6 months, then checked in with her, then she would continue to prescribe it. I was asked to see a different neurologist for an opinion (or something) and that neurologist said yes, I can take continue to take it each day. I then began seeing a therapist at a mental health clinic. He didn’t really do therapy because he was the administrator of the clinic, but he was so intrigued by my case he wanted to take me on as a patient and record me talking about my condition. The first thing he did when he walked in was slap a bunch of papers down (info on HPPD) and said yep, you can take Klonopin for the rest of your life because it is not a harmful drug. (Nowadays they say it is harmful because it’s addictive and people misuse it and it can bring on early dementia. Like, thanks people for ruining it for the rest of us!) I’m rambling but to sum it up, I have been taking Klonopin every single day for 14 years. However, since a lot of doctors are skittish about prescribing it, it would be difficult to get. Also, getting off of it (let’s say, for example, my pdoc decides not to prescribe it anymore, or I get another one who won’t prescribe it) the withdrawals are horrible even if you don’t have HPPD and if done incorrectly, you could literally die from it. If you DO have HPPD, it will come back a millionfold and you will wish you had never taken it in the first place. So each month I live in fear that someone will make me get off of it. So it was worth it but not worth it. I think you should just give it time and the DP/DR will lessen. As far as other medication, I have heard that lamotrigine is promising, and also Clonidine. Maybe you could try that. I’m sorry for rambling on and on. I do this every time I get on here. I lose track and then suddenly I’m like, wait, what was the question? I probably could have condensed this whole thing into like 2 paragraphs. But hopefully maybe I helped a little bit.

I’m not a bro, I am a 45 year old woman and you actually made me lol. No kidding

I have HPPD from taking LSD, had it for 25 years. This isn’t about me though, it’s about my son. He is 15. This sounds SO weird but this past Saturday, October 28th, I was having a Halloween get-together. My son’s costume called for pink hair. My son has very long thick hair and I had to use 3 cans of Halloween hairspray on him. Let’s just say I for one, am a complete, unthinking idiot and for two, I was in a rush. We did his hair in the living room while he was laying on a few towels. I had neglected to open a door or even a window. I was spraying the hell out of his hair like a madwoman because I was in a big hurry, he kept yelling at me that every strand had to be pink, etc. We both felt fine that night. I felt crappy the next morning, my visuals were more than usual (I take Klonopin, so my visuals are fairly minimal) but Sunday early evening my son woke me up and said he felt “lightheaded.” I thought he was dehydrated and told him to drink water. (He was completely fine up until about 5:00 that Sunday, a little over 24 hours since the hairspray debacle.) The next day he said he was woozy and lightheaded, I called him off of school, I myself didn’t feel 100% but after awhile I started to feel pretty normal again. I figured we had both gotten woozy and weak from the fumes. When my son woke up that Monday, he told me his vision was staticky (he said it was moving “fast”) everything was waving and swaying, his body felt like it was swaying and moving. Basically every single symptom he described was classic HPPD, which of course I then FREAKED and rushed him to the ER (which I knew wouldn’t do any good but I wanted him checked out anyway.) Of course his CT and bloodwork came back normal, the doctor was “doubtful” his symptoms were from the hairspray fumes because they didn’t start until over 24 after hair spraying him (gee, anyone ever heard that before?) They prescribed him meclazine (Dramamine) for motion sickness and Zofran for nausea, then said to follow up with his doctor within 4-7 days. They suggested it may be an ear issue, as far as the swaying and vertigo, and that the vision issues could be due to a migraine. Like, a total absolute repeat from when I got it 25 years ago. There was no point in me telling the doctor I already knew what it was, because my husband agreed that we will not put him on any medication for this. I’ve been on Klonopin for about 14 years and if I get cut off of it, it’s going to be hell on earth in some kind of way. My husband knows this (he knows all about my HPPD and he’s so good to me, and understanding even though he doesn’t have it, somehow he “gets” it or at least can try to imagine how it feels.) I completely agree that I do not want my son on any medication. I’m pretty sure he knows I have HPPD. I’ve talked about it with my kids but I don’t really remember how in depth I’ve gone with it to my son-ironically I told my kids about it when they got older to discourage them from ever doing hallucinogens, Ecstasy, etc. Now I basically gave it to my own kid because I hairsprayed his hair in a totally non-ventilated room. This stuff was ALL over his skin, he kept having to wipe himself down, that shit was EVERYWHERE. I have been sick to my stomach with fear, bawling nonstop, feeling so guilty I can’t live with myself. I’m so upset I can’t think straight. Do you guys think his will fade and he will be a success story? Like I said, he is only 15 and as far as I know (he’s an honest, open kid, so I believe him) he’s smoked pot and drank cough syrup one time this past August to see what it felt like, and he said he didn’t really like it but that after he “came down,” he was fine. Basically saying I 100% think it’s from more or less “huffing” those horrid hairspray fumes, and it wasn’t even his fault!!!! Any advice? I suffered so horribly from HPPD and that was bad enough but to see my child having the exact same symptoms is over a billion times worse, especially because it was essentially my fault for being stupid enough to not make sure the living room was ventilated well enough.

Hi! First of all, congratulations on your pregnancy! I get a strobe-like effect in the dark. Also more intense visual snow when it is dark, especially when I close my eyes. If I look at the sky I see starbursts and what I call “eye worms.” Like elongated blobs. I get floaters but they are not too bad most of the time. Funnily enough, my pupils are dilated as well, which I didn’t know until my eye doctor mentioned it. Sometimes it feels like I’m getting a migraine (I have a history of migraines.) I get visual snow (mild and not too bothersome.) That is what I experience now even after being in clonazepam for about 14 years. Of course my symptoms were WAY worse, more intense and “extra” before I started on the clonazepam. At first, when I started on the clonazepam, over 99% of all of my symptoms basically disappeared. But since I’ve been on it for so long, I still get symptoms but nowhere NEAR as bad and I basically feel “normal.”

Hi there! I’ve had HPPD for about 25 or so years now. It was horrible. I went to a lot of doctors that did CT scans on me, eye doctors, etc. and all my tests were normal. I knew what was happening to me was from the LSD I dropped, but I was way too ashamed to admit I had taken drugs (and kind of afraid I would be in trouble for taking illegal drugs.) I just chalked it up to, ok, I gave myself brain damage from doing LSD and figured that was that. What made it worse was that back then (late 90’s) no one had ever heard of HPPD. I had never even heard of it. I wish I had because I would have known to cut down on caffeine, not taken cold medicines, never drink energy drinks, etc because it would flare so bad sometimes and I couldn’t figure it out. The WORST part was the DP/DR. I felt like I was trapped behind a wall of glass and nothing seemed quite real, and I couldn’t concentrate. One day in 2009 (?) I was having a HORRIBLE flare. I had been drinking sooo much Red Bull and taken medication for a cold. It was beyond the point. So for the heck of it, I started Googling my symptoms and lo and behold…a whole page on HPPD! I was so “happy” I cried. The article said that clonazepam helped the symptoms. I immediately went to a neurologist, who did not believe me, and thought it was just migraines. I said to him, “So I’ve had an 11 year migraine?” I couldn’t get anywhere with him so I left. Then he called me and said when he was on his lunch break, he looked up HPPD. He was still pretty skeptical, but open-minded enough to start me on clonazepam. My symptoms were 99% gone. I could not believe it. No more DP/DR, and no visuals. My eyesight was so clear and beautiful. Anyway, I’ve been on clonazepam ever since. I take it every single day. The flip side of the coin is that doctors are reluctant to prescribe it because it is a benzo. So far, I have been beyond blessed to keep getting it. Maybe because I have been on it so long they figure it would do more harm than good to take me off of it? I don’t know. However, I live in great fear of the day I can no longer get it (you never know.) So part of me wishes I had not taken it, but a big part of me is glad because it helped me so much. Nowadays there are other medications that are supposed to help that are not addictive. Maybe you could look into that? I don’t trust supplements in any way, shape or form, but if they help you then that’s great! Sorry, I tend to meander and then lose track of what I was talking about! Lol. Some good tips are never take drugs again (which you said and that’s awesome because some people still take drugs or want to! I don’t get it.) Don’t take cold medications, they have DXM in them. Avoid energy drinks and don’t drink a lot of caffeine. Never take an antibiotic from the fluoroquinolone family. (You can look up what drugs are in that class of medications, but basically anything ending with “floxin” or “flaxin”, and avoid Ciproflaxin like the plague. It’s a terrible medication even if you don’t have HPPD.) Sounds weird but don’t keep focusing on it. Alcohol makes it worse. Drink in moderation. Don’t be afraid to tell your doctor. The diagnosis is in the DSM-V. Let them know that. I guess that’s all I can think of for now. Sorry this is so long!!! This forum is AWESOME. The people here are so great, they know what you’re going through, and there is a lot of good info on here.

Case in point

Sorry if I picked the wrong forum…I’ve been taking Melatonin for a couple of weeks and I LOVE it. It knocks me out and keeps me asleep all night. I think it makes my HPPD symptoms a bit worse in the mornings though…does anyone else take Melatonin? Does it affect your symptoms?

I don’t know why, mikemeas, but your comments are really starting to annoy me. You have no idea what you’re talking about, and you sound ignorant and patronizing. Please stop.

I have type 2 HPPD

Oh God sounds nightmarish. That’s my biggest fear. I’ve been on Klonopin for what, 14 years? Every day. I dread the day when someone decides to stop prescribing it to me. I couldn’t deal with all of that. You are so strong and I am heartbroken that you are going through this. I think you posted this back in June and it’s now October but I decided to comment anyway. I have told myself if that ever happens to me, I will no longer be of this world. But you are so strong and haven’t given up and that is awesome. Going cold turkey off of benzos can lead to death. So did your GP just stop giving it to you and threw you out into the wind? I don’t understand how doctors don’t seem to have a clue about tapering. I would sue the crap out of that doctor.

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.

I’m just curious what rc means

Oh my gosh, I thought I was the only one! I don’t drink (but when I used to my symptoms would definitely be worse the next day.) But now if I eat a lot of sugar and sweets, the next day my symptoms are sooo bad. I put two and two together and figures sugar wrecked me, but I thought it was just me.

I think I must be allergic. I never was when I was younger. Sucks because I like Amoxicillin, it is the only antibiotic that has never caused side effects…till now! Lol

Yeah, I’ve only ever tried clonazepam for my symptoms and it has worked super well over the years.

I totally agree. The side effects seem 1,000 times more awful than the condition being treated. Talk about depressing!

I have heard that antipsychotics make HPPD a lot worse.

I’m on Wellbutrin and it doesn’t seem to affect me in any negative way, it has in fact improved my depression. Of course, I’m on a whole cocktail of other meds.

Siren001, This is the first time I have read your posts and they literally make no sense to me. Like word salad. What are you even talking about? Also, stop being rude because it just makes you look like an idiot.

Hello! Thank you so much for replying. I always catastrophize. That’s what a therapist told me years ago. She said instead of going from point A to point B, I jump from point A to point Z Like, immediately to the worst possible outcome. My husband says the same thing. This is what I pictured: my prescriber apologizing for not being able to prescribe Klonopin anymore (for whatever reason.) Me in a mental ward trying to wean off of it. Rolling around on an uncomfortable bed with a constant “splitting headache,” never-ending nausea and diarrhea, seizures, convulsions and psychosis. (And HPPD symptoms, of course.) Finally living out my days as a drooling wreck in a wheelchair because my brain can no longer function. Thank you for bringing me back to reality! I think I did look up Steven Locke but he only has a license to practice in a few states (none of which are mine.) So I don’t know if I could even become his patient if worse came to worst. But if worse did come to worst, I would definitely reach out to him. Hopefully you are doing well! I’m excited to hear how Keppra works out for you. I really hope it does the trick. Today was a bad day because for one, I am getting prescribed 2 mg pills now to split in half (to equal 3 mg per day ostensibly) and the pills are so soft I can never cut them evenly and a lot of times they crumble. I’ve tried 4 different pill cutters and even looked on YouTube. So I don’t think I’m properly getting 3 mg through my system each day. It’s REALLY frustrating and I’ve had to dip into my “stash” of extras (1 mg tablets) and I don’t want to keep doing that. Also I pigged out today on SO much junky food and read a book all afternoon and for some reason it amplified my symptoms. Especially the DP/DR. This is why I don’t read or watch TV for hours on end like I used to, especially during the day. It makes me feel so disoriented. And when I pig out it makes everything worse for some reason. I think it’s too much sugar. If I eat too much sugar, the next day my symptoms will kind of flare up. Is that weird? I had to take 2 extra 1 mg Klonopin from my stash and for some reason I still feel out of it. Probably part of it is eye strain. Well, thanks for listening to me whine and freak out I guess if I can’t freak out to you guys, who can I? Love you all xoxo

Ugh. I was on that antibiotic back in May and at first I was fine, then I kept forgetting to take them so I asked my PCP if I should go ahead and finish the course. She said yeah. Then I took one and I broke out into a rash and welts and my face was on FIRE. It was as red as a fire engine. The day before the rash, I had taken one and the inside of my body felt utterly INFLAMED and I was in so much pain from head to toe I didn’t know what was going on. Guess just a reaction but it was weird. And yes, it messed with my HPPD symptoms. There are several antibiotics that make my symptoms worse. Cipro is the worst antibiotic ever. It’s a dangerous drug and I think it should be banned. I’m also allergic to that and break out into a rash. I would say avoid anything in the fluoroquinolone family for sure.

Omg that’s terrible! Yep, definitely weird that the other meds didn’t work, but that Xanax did. I heard Xanax has a short half life so I guess that’s why the effects don’t last very long. Well, I guess 50% of relief is better than nothing The Klonopin works for me. But I had a terrifying panic attack today because I read about the Ashton protocol online today (just in case I eventually can’t get Klonopin anymore.) It sounds horrifying (and that’s trying to get off of it without having HPPD!) I even took a screenshot of the withdrawal effects you supposedly get while you are tapering: splitting headaches, constant nausea and vomiting, severe panic attacks, hallucinations and psychosis, delirium, uncontrolled tremors, and some vague mention about “danger to the physical body.” Like what the hell!?? And that was inpatient taper. With a 90% success rate. What does that even mean? What the hell happens to the other 10%? They go insane and live out their lives in a mental institution? Klonopin made my life so much better, but a part of me wishes I had never gotten on it. I knew withdrawals would be bad, but I didn’t know they would be THAT bad! Plus the HPPD would come back on top of everything. It would be like living in the 7th circle of Hell. I haven’t gotten on here in a couple weeks, but now I’m feeling kind of disheartened and frightened. And guess I need a pep talk lol