AF44

Hello and welcome! I am very sorry to hear about your situation, but don’t worry, we are all in this together. I think I (personally) would like a bit more information about your drug usage, when your symptoms started, and any other symptoms you have besides the afterimages and the light that looks odd to you. I would really like to see your diagnoses and lab reports as soon as you are able to get them on here. Also, I don’t mind at all if you would like to email me on here. In fact, anyone here on this site is welcome to talk to me one-on-one if they feel like it

I am so terribly sorry to hear that. You DO have a human right to be healthy and have a good quality of life. And yes, I HATE the fact that these ridiculous medical professionals will not prescribe benzos to people who actually need them for a severe medical issue. It’s not our fault other people abuse them, or that these so-called psychiatrists don’t know their ass from a hole in the wall. I think it is especially heinous that you were prescribed them in the past and got cut off, which then made everything a hundred times worse. What state do you live in? I live in Oregon and we are pretty hippy-dippy and all into the importance of striving to help the mentally ill. I feel lucky to live here especially in this particular county, where I go to a mental health clinic that staffs very compassionate medical professionals. I never even get charged a fee or copay (I do have Medicare, not because I’m old, lol, but because I’m on disability for having Bipolar Disorder-which seriously I think is just HPPD.) I guess my point is that I know a lot of states-assuming you live in the U.S-are tough and don’t give much of a crap about mental health. Oh, I was just thinking, I heard there is actually a directory of doctors who work with people who have HPPD. If you could get your hands on that information, maybe you could start contacting people. I am a pretty proactive person when it comes to managing my health (probably too proactive, as I am a raging hypochondriac!) and I’m also the one to dive maniacally headfirst into thinking of solutions for other people who are suffering from medical issues, especially weird ones where doctors are scratching their heads and don’t bother to take the time to figure shit out. So-do you have family members who understand what is happening and are willing to advocate for you no matter how much effort it takes? Sorry for this long response but I seriously cannot bear to think of your suffering and I truly BELIEVE we can find a way to alleviate it, at least somewhat. You can email me if you want/or are able to, seeing as your eyeballs are probably about to fall out of your head. Sometimes I wish MY eyeballs would fall out of my head Much love and I will be praying for you.

Right?? Lol!

Hello fellow HPPD-ers I am on here because, frankly, I’m freaking out. So quick version-for over two years I have fallen- A LOT. My balance is bad. Anyway, each time I fell, I would catch myself with my right arm, which led to terrible shoulder issues. I did physical therapy twice, had dry needle injections, and ate buttloads of muscle relaxers (my doc was handing them out like candy.) The PT actually helped…but then I would fall again and injure that same shoulder. At this point, the doctor said my last hope was to see a chiropractor. (I have asked for cortisone injections, an MRI to see if I have rotator cuff damage, etc., but she said no.) Ok, this will not be a quick version, sorry guys Incidentally, my son was referred to a Physical Therapy clinic for pelvic floor exercises. He’s had some issues, but anyway, his urologist said the place came highly recommended. When I took him in for his first appointment, I learned that the clinic accepted my insurance. There is only one guy who I was told was “allowed” to crack people. Like had a chiropractic license, I guess? I should have seriously dug deeper but I tend to trust everyone, and the employees at the clinic are extremely kind. Anyone remember the old-school claymation Rudolph the Red Nosed Reindeer that came on TV every Christmas? Remember Cornelius? Well, the guy looked just like him. That’s just a side note and has zip to do with my issue. The first appointment I had, he ended up doing a high velocity crack on my poor skinny arthritic neck. It felt good at the time, but a day later it started to hurt pretty bad, I expected to be sore, but the following day the pain in my head and neck was so agonizing I debated going to the ER. Couldn’t even move my head, was sick from the pain. Like, scale of 1-10, a 20. Shoulda just gone to ER. Lasted 5 days, easing a bit each day. I told him what happened when I saw him for my 2nd appointment and he quickly informed me that there is a bundle of nerves that run through the vertebrae which is what caused the pain, acted like no big deal but said he wouldn’t crack my neck again. So I started getting lame massages on my shoulder while lying on the bed. Like he just slid his hand up and down my shoulder. Wasn’t really doing much, but since I was still in pain, I just mindlessly kept making appointments. Ok, to FINALLY get to the point, this past Wednesday he cracked my neck again, but just a “normal” crack like what my primary care doc would do (she’s a DO.) I was totally fine…until I woke up Thursday morning and my vision was so blurry and I had such bad photophobia and ghosting, I couldn’t see straight. This is with my glasses on, mind you. It was horrible! My eyesight was so horrific I couldn’t even drive my son to school that day. I managed a shower somehow, then suddenly got so weak and tired I lapsed into a coma for 3 hours. So exhausted out of nowhere. Then I was mostly ok on Friday. Saturday morning I woke up with the most severe photophobia I have EVER had, blurry vision, and a lot of visuals and my head felt so weird. (HPPD weird, you all know what I’m talking about.) I mean, it was BAD despite taking my Klonopin. I don’t even know how I managed to get through the day. I got loud tinnitus and every little sound was so loud and grating, it was driving me crazy. (Well, more like scaring me.) I couldn’t get into my eye clinic, but I have an “urgent” appointment scheduled for tomorrow at 2 pm. One other thing…I have been noticing that my “regular non-HPPD vision” has been getting really blurry over the past couple months or so. I couldn’t figure out why. Now I wonder if it has something to do with my chiropractic treatment (which I started in December.) Do you guys think the neck adjustments (especially this most recent one) are a direct cause of my blurry “normal” vision, and the massive HPPD flare up I now have? I have been crying and very scared. Has anyone else had a similar experience with a chiropractic adjustment? I am sorry this is SO long. I literally feel like I’m about to go blind (which actually wouldn’t be all that bad lol.) Thank you for reading this, I appreciate it.

I have been on Klonopin for approximately 14 years and thank the Lord no one has ever tried to take me off of it (knock on wood.) The way your psychiatrist tried to taper you off of it was egregious and extremely irresponsible to the point of causing harm. I’ve always bitched that doctors have no clue how to taper anyone off any psych med, which I fail to understand. Even a slow taper is difficult to get through, and takes time. But it’s especially dangerous when it comes to benzos. Not only mentally, but physically. I totally get it…I’m scared that eventually I will be taken off my Klonopin and I can’t be…I have a family and responsibilities and I want to be around to enjoy my loved ones and my life. So cruel for someone who is supposed to be a professional to do this to someone.

Umm most of them would last like a week or so…? Though I have had a couple of flare ups that have lasted almost a month. Those are the times I freak out, but they always subside. Actually, I came on here today because I am having a bad flare up from what I believe was caused by a neck adjustment by my chiropractor. I’ve been freaking out about it, but I should take my own advice…and put a wash rag on my head!

Good for you…I am praying the hospital will help you. You are tuff.

Aliens…love it! Made me lol

I second, third and fourth that.

Why were you looking up HPPD anyway?

I just read what you wrote and I thought it was FANTASTIC. So many similarities as to what I experienced/experience, despite currently taking Klonopin. (Been on it for about 14-ish years now) I got HPPD from LSD back in 1998. I had done LSD before with no issues, but it only took one damn random trip to ruin me. I loved the pictures you included. So accurate it’s scary. My husband knows I have HPPD and he’s extremely supportive, but sometimes he just doesn’t get it. He thinks it’s just visual stuff, and like it’s not a big deal to see snow or halos or tracers. Like it’s not scary, and he sees stuff out of the “corner of his eye” all the time and it doesn’t scare him. It’s not his fault he doesn’t fully understand, but at least he tries. I am going to show him the pictures you put in your book. This sounds corny but I am so proud of you

Omg I’m fixing to read this right now. And the bipolar thing… the psychs diagnosed me with Bipolar 1 like over 10 years AFTER I got HPPD. And now no one believes me because people who have bipolar don’t know they don’t have it Any sort of “mania” I experienced was either alcohol or psych drug-induced. And who the hell wouldn’t be depressed and anxious living with HPPD?

I was put on Seroquel a long time ago to help my depression and my insomnia. All it did was have the opposite effect on me. I remember buzzing around, wide awake, feeling weird, and never taking it again after the two days I was on it. It also seemed like it increased my visuals a bit, if I’m remembering correctly. If that crap got you bent, I would definitely not take it. Imo, 99% of psych meds are just poison pills that make a lot of things worse. The 1% that do work, great, but then you’re stuck on them forever because of the horrible withdrawal symptoms that happen when you try to get off of them. Sorry for being a bummer. I’ve been pretty down for the last few days.

Wow! This post is amazing. If you wrote this with brain fog, I don’t even know what to say. When I have brain fog I can hardly add simple numbers! Thank you, this is very interesting. When I got HPPD 25 or so years ago, I just thought I had basically fried my brain. It’s amazing how much we have learned about the brain over the years. It gives us hope, and also I believe it makes medical professionals take us more seriously since there is hard scientific evidence of what is behind HPPD.

You rock! But seriously? It would be a huge undertaking.

Wow like I’m 10 years late to seeing this post, but I had the same idea! I even actually emailed it to someone on this forum. I had sat for a while and thought about how we could pull it off. It would be extremely expensive of course. We would have to agree on a venue. I was thinking that we could have speakers (professionals) and also kind of like a carnival (no rides though, haha!!) We could have booths, games, food trucks (or whatever) and make a damn day of it!! Anyone interested in actually trying to figure out a way to pull this off…?

That’s very interesting. I have never heard of PIED. I am going to look it up. Have no idea if that would have anything to do with your HPPD but human brains are weird as hell so who knows.

Hi there! Yes, I think going back to work definitely has something to do with your flare up. I notice that when I am stressed and tired, my symptoms get worse. Probably more the being tired part is what gets me. What sort of job do you have? I don’t work right now, but the last job I had was as a checker at a large, extremely busy grocery store. My shifts were constantly changing. By about halfway through my shift, not only did I feel dead, but my symptoms would flare up. Another thought…if you are staring at a computer all day, that could cause your visuals to get worse. That happens to me as well. In my “professional” opinion (har har) I think that once you get into your rhythm, your flare up will go down. I am very lucky that I don’t have to work, as my husband is the breadwinner but I actually WANT to work. It would be nice to have some extra money and feel productive. My husband suggested that I wait until the summer and find an easygoing, low stress part time job if I want. That’s about all I would be able to handle these days. Anyway! Enough about me, congrats on your job!! I’m sure you will start to feel better soon

I’m so sorry to hear about your horrible experience! Don’t even get me started on how medical professionals have no clue how to taper. Cutting the clonazepam in half is the most egregious thing I’ve ever heard, especially since you have been on it for so long. I myself have been on clonazepam for about 14 (?) years and currently I take 3 mg per day. I’m like you…I only take it for my symptoms…my dose has gone up over the years due to tolerance but I have never asked to be raised on it (except when I very first started taking it, I asked to go from 1 mg to 1.5 mg, which I was on forever.) I also have severe anxiety and a diagnosis of Bipolar Disorder (which I am doubtful of, but what do I know…I’m crazy right ), anyway, some years ago I had a meds prescriber who said my anxiety was due to “Bipolar manic panic.” Yes. That’s what he said. So he doubled my dose of clonazepam, even though I told him I only took it for HPPD. He acted like he didn’t hear me when I said HPPD. I mistakenly started to slowly take more than the 1.5 over the years and now I’m up to 3 mg per day. Wish I had just stuck with the 1.5 but too late now, whatever. I wouldn’t take any more than 3 even if it was offered. Right now I have a (different) prescriber who knows about my HPPD and she gives me my script every month, bless her. But the government is cracking down so hard on scheduled substances that I worry at some point they’ll cut me off. That would be a disaster!! I would definitely have to go SLOW, and it would probably take years to get off, and I know the HPPD symptoms would still be there for the rest of my life. It’s a terrible thought. I’m so happy you found someone who knows what the hell they’re doing. Ugh. Klonopin is both a blessing and a curse. I still have symptoms even taking the K, but nothing at all compared to before. I too have dry eye, which doesn’t help! Also, I’m older (45) and my eyesight is going down the tubes. Without my glasses I think I would be considered legally blind! Blurry eyesight + HPPD= SUCK. Anyway, best of luck to you and I hope you can comfortably taper off the Klonopin.

I have heard antipsychotics make HPPD way worse, especially risperidone.

I completely agree with Jay. I took Prozac for a little while years ago. (I already had HPPD though.) I guess I must have mentioned that I was depressed and some doctor put me on it. I thought it would be a good med for me to take because my mom had/has been on it for many years and it really worked for her, so I just assumed it would work for me. I got a lot of the same symptoms. I also had dissociation, felt weird, and for some reason decided to give myself a haircut that was so terrible I had to shave my head! After that I stopped taking it, needless to say. I swear, I think SSRI’s are poison.

Hi! I think I already put in my two cents yesterday or the day before (omg my memory is SO horrible!) but maybe it’s a problem with your ears? Like a physical issue that either coincidentally popped up, or the HPPD triggered it or made it more noticeable? Are you able to get a referral to an ENT? It wouldn’t hurt to get your ears checked, at any rate. I truly hope your symptoms get better. I think someone else suggested this, (maybe it was me? LOL) ear plugs? I almost wonder if you have Meneire’s. Well anyway, I will stop babbling. Keep us updated

I never knew any of that. I remember that the first time I did LSD I got it from a close friend. He just said it was LSD. The second time I did it, a few years later, my bf at the time just walked down a street in Portland known for drugs and came back with some acid for us. I took X when I was 15, with friends, it was a white circular tablet and my friend only gave me a quarter of a piece. (He was a good friend. Trying not to give me a high dose.) I remember he said it was part LSD or something. That was a really long time ago, obviously. I never bought/got my own drugs. Ironically, I paid for the freaking acid that gave me HPPD, but again, it was my bf at the time who got it. (Can you imagine, the one time in my life I actually PAID for drugs and this is what happened to me! It’s almost funny in a horrible sort of way!) So I feel ignorant but I guess it doesn’t matter in the long run! Same outcome pretty much I’m assuming.

Omggg so true. I was actually praying I had a brain tumor when I first got HPPD. (Even though I knew in my heart that it was the LSD.)

Hi! I’m so sorry to hear about those symptoms. I know this post is pretty late. This sounds kind of silly, but maybe you could go to an ear doctor? Like an ENT? Maybe you have something physically wrong with your ears and the HPPD either made it worse or way more noticeable. I have had ear problems since I was a kid (ear infections, a ruptured ear drum, horrible equilibrium, fluid in the ear, tinnitus) so when I saw the symptoms you listed I thought it might be worth a shot to see an ear specialist. (If you haven’t already.)