AF44

My doctor handed out cyclobenzaprine like candy for a shoulder issue. Since I’m on like 5 different medications (including Klonopin for the HPPD) I’m not sure if it helped although it seems like my visuals went down when I took it. (Yes, I still have HPPD symptoms despite the Klonopin-been on it for about 12 years) but the cyclobenzaprine wrecked my ass so hard I had to stop taking it. I felt like a floppy rag doll 24/7 (and that’s even when I went for periods without taking it!) started garbling my words, and ended up in the ER thinking I’d had a mini stroke because I was slurring and could barely move. I was falling down so often I was made to see a neurologist to make sure I didn’t have MS or anything like that. I finally put 2 and 2 together and chucked that shit and went back to normal. But like I said, maybe it did that to me since I’m on a lot of different psych meds, maybe try it and see if it works. It’s worth a shot!

How long have you had HPPD? I’ve had it for about 25 or 26 years. I felt the way you do when I first got it. But then it got “less.” Definitely not cured but less intense and I was able to lead a mostly normal life-I worked, got married and had kids. Some days I didn’t even notice my symptoms! Maybe it’s just me but I feel as though HPPD doesn’t make me feel like a real human anymore but that’s not true. Please don’t give up. You are NOT a waste of time, money and resources. You are a beautiful person who happened to get this crap and no matter what, it’s not your fault. So we experimented with drugs…loads of people do, especially teenagers/young adults. Don’t blame yourself. I’ll betcha there are a lot of people who would be heartbroken if you left this world. Nowadays there are lots of options to help treat your symptoms, like everyone said. Even if you don’t get “cured,” you can still lead a good life.

When I first got HPPD I watched a lot of movies and TV because it calmed my visual symptoms. But I do remember feeling “disoriented” (derealization) afterwards, especially coming out of a movie theater.

I’m glad you are getting tests done! I really hope you feel better. And yes, let us know! Hopefully you’ll have answers soon

I’m so sorry to hear about that, and the stomach issues can’t be fun Hm. I had a meds prescriber tell me that serotonin is located in the stomach area. I know that sounds weird, but a few of them have said it. LSD has serotonin in it. I probably sound like an imbecile, but maybe they are linked? Also, stress and anxiety will definitely tear up your stomach. Could be IBS, which is caused by stress and will cramp/spaz your intestines out, cause gas, bloating, heartburn, etc. One other thing, could you possibly have IBD…Crohn’s, UC, Celiac disease? If you are able, ask your doctor to do bloodwork to test for those things. Maybe you’ve had something all along and the LSD exacerbated it. Keep us posted, and I hope you feel better!!

Hi, it’s been a few months, have any of your symptoms improved? I hope so.

What exactly is slow motion vision? I wonder if I have it. Years ago I had a severe kidney infection with a fever of 105.1 (I was hospitalized.) When I first got the fever, when I turned my head it seemed like it took a second or two for my vision to catch up. The doctor said that it was most likely from the fever. But every once in awhile, these days, the same thing will happen. I turn my head and it takes a second for my vision to catch up. Is that what y’all mean by slo mo vision?

Yeah I’m definitely a sugar-holic, I need to be eating less junk!

Hi, I got HPPD in 1998 from acid. When I read all of these posts, everyone uses terms like “50 ug LSD” or “3.5 mg yadda yadda mushrooms.” I am so clueless about all of this! (And interested!) Back in my day (oh gawd I sound ancient) we were just like, hey I got a dime bag, or 10 tabs of acid, or shrooms, or Ecstasy. No clue there was a million different types? How do you all know about the types and kinds? I’m very curious!

Hi! I have been on clonazepam every day for over a decade. It’s a blessing and a curse. I’m an oldie, lol, I got HPPD back in August of 1998 from taking LSD. Back then I don’t think anyone had ever heard of it. I hadn’t, just figured I had brain damage from taking drugs. Years later my symptoms were SO bad I was kind of looking stuff up on Google. Back in the day I never googled anything but it was a thing so I typed in some of my symptoms. I had been chugging Red Bull like a maniac. I looked up symptoms of caffeine overdose or what happens if you drink too many energy drinks and of all the things…I saw a page on HPPD!! I couldn’t believe it!! The page said that clonazepam was supposed to really help the symptoms. I was able to get it from a neurologist. He was very skeptical of HPPD, but after looking it up he figured there might be something to it and said, sure, here’s clonazepam, now you can just get it through your regular doctor. I would get a 6 month refill, then have an appointment with my dr. to see how I was doing, then she would give me another 6 month refill. I was required to see a second neurologist, and this neurologist said yes, it’s fine, she can be on it. Back then the laws on scheduled substances were a lot more lax. Nowadays you practically have to be dying to even get a pain pill, and Drs. are very cautious about prescribing benzodiazepines. But anyway, I’m still on it to this day, probably only because I’ve been on it for so long maybe they think the benefits outweigh the risks. I would do what Jay does. He’s very smart in how he uses his clonazepam, and he has his own schedule of doing it (he’s just plain smart anyway!!! ) So it could be worth looking into, but I would not take it every day, even if a dr was willing to prescribe it for every day use.

Hey I figured someone must have had something similar. My son’s was so bad though that it was freaking him out. Ok actually-it was freaking ME out. (I’m sure it was freaking him out too though.) He is so stoic. The only time he even mentioned it was when it got bad enough for him to ask for his meclizine. He would look positively gray. Luckily, that seems to be fading A LOT. Over the past few weeks. Praise God. I just couldn’t imagine feeling like that every day, along with the other stuff. Whew!

I thought I was weird, because when I eat a lot of sugar my HPPD flares up! Huh…

You are right about avoiding caffeine but I am so addicted to coffee I am willing to suffer! Lol. I don’t drink anymore, I think I drank a lot when I first got it because it was a distraction, but drinking is bad news for sure. What is cavernous sinus thrombosis? It sounds terrible. I’m really interested in medical conditions and their symptoms. Is it a sort of a blood clot in your sinuses? My meds prescriber strongly suggested that I make a neurology appointment because I fall a lot. (By strongly, I mean she practically “forced” me to make the appointment, lol. But she is awesome and truly cares, not only about mental health but also physical health. Love her to death.) I finally caved but I’m not looking forward to the appointment. I have fallen so many times over the years, several medical professionals said it’s not normal for a woman my age to fall so much (early 40’s) and to see a neurologist. I think the falling was from being on muscle relaxers for so long. I fell so much I janked my right shoulder up really bad, so my doctor threw muscle relaxers at me like candy. Which then made me fall more because my muscles were constantly weak, and I was always out of it. I stopped taking muscle relaxers altogether…and pretty much stopped falling down! Oh…another thing I have been thinking about recently. Have you heard of Intracranial Hypertension something? I think they also call it pseudotumor cerebri, which is what my doctor diagnosed me with when I got HPPD back in ‘98. (But of course, I had HPPD.) However, I had the symptoms and my optic nerve was swollen in my left eye, so the neurologist at that time ordered a CT scan, which was normal. I was reading about it and the symptoms include a swollen optic nerve, but CT’s and MRI’s are unremarkable. It’s called a pseudotumor because it mimics a tumor because there is something pressing on the brain, and causes visual disturbances. I think it’s from too much spinal fluid. Omg sorry for the long, rambling explanation. I think I have the Intracranial Hypertension because sometimes it feels like my head is going to pop when I lie down (I have no headache, but it literally feels like a giant is squeezing my neck until my head wants to blow from the pressure.) The pressure revolves immediately when I sit up or stand up. I have also had the pulsating pressure in my head that goes along with my heartbeat, which is another symptom. However, this only happens intermittently, so I don’t know if it means anything or not or if I should even mention it. Well I’m going to stop now, this is practically a novel, sorry! Was just thinking about it because you commented on searching other conditions that are comorbid.

I agree that the anxiety and dp/dr are worse than the visuals. I have been where you are, so I understand but PLEASE don’t give up. There are medications, etc., and it seems like a lot of people’s symptoms go down after awhile. I have HPPD 2 and it was so awful but my symptoms faded enough for me to work, get married, and raise four children. It was hard but I was still able to do it. I know your post is over a year old, and I don’t know if you get on the forum anymore, but if so, let us know how you are doing.

Hi all! I have a question. Have any of you had bizarre motion issues with HPPD? Long story short, I got it when I was about 20 (am 45 now, got it from LSD) and I remember feeling a “rocking” sensation when I was lying down. Like rocking back and forth on a boat. I also remember being in my car and feeling it roll backwards, which of course, it wasn’t. I ask because a horrible irony occurred at the end of October…I’ll try to make it quick, it was Halloween, my 15 year old son wanted his whole hair sprayed pink (he has extremely long, thick hair,) went through three bottles of Halloween hairspray and he breathed a lot of the fumes in, then a day or so later described weird symptoms he was having-textbook HPPD. Tracers, waving, warping objects, static, etc., but the worst seemed to be motion sickness. I kept asking him to describe it because I was at a loss, and the way he described it sounded like he was basically stuck on the carnival ride from Hell. He felt like he was doing “forward flips,” no vertigo technically, just body motion constantly. Does/did anyone have this, and did it eventually go away?

I remember when I first got HPPD, I had not only head pressure, but actual CRAMPS on the top of my head! It was really bizarre. (But then again, what isn’t when it comes to this condition.) I also remember telling my mom that it felt like someone had taken my brain out of my head, scraped it down a sidewalk, then put it back into my skull. The cramps and “scraped brain” LOL, did go away. I then stupidly took shrooms at a concert and the next day, I heard a REALLY loud piano playing. Every. Single. Minute. It was like someone was literally right next to me playing piano very loudly. At least they played it well. (No joke!) I was terrified and told my mom (that poor woman went through hell worrying about what was happening to me) and I remember lying on the couch with my head in her lap watching a movie while she rubbed my head. Thank the Lord above it only lasted that one day. So in a way, I can sort of “get” what you are saying about the sound thing, but obviously not completely. Sucks but I’ll betcha it will go away. I wonder if ear plugs would help?

Hi! Congrats! I am 45 and have 4 children. From what I can recall, it was my second pregnancy that was the WORST as far as my HPPD symptoms went. It was awful. But I had an epidural, gave birth, and my symptoms lessened a lot. No idea why. Btw, I could be wrong, but I heard it was a myth that LSD stayed in your spinal fluid. I always thought that as well.

I guess I had that when I first got HPPD 25 years ago, but I don’t really remember because all of my other symptoms were worse. However, in 2012 I got it BAD for a couple of days and it felt like my head was squeezing so hard. It happened at work and I would look at my computer and there would be a square shape on the wall that would stay for a long time and I had to go home. At the time, I was chugging energy drinks, not realizing they were making my symptoms 10 million times worse. I didn’t even know I had HPPD at the time. So yeah good advice from Blossy-avoid alcohol, drugs, and caffeine…especially energy drinks!

I have had very vivid dreams my entire life, I can pretty much remember almost every detail. Anyway, when I was in my 30’s I would have such vivid, nonstop dreams it was actually exhausting. I was Rx prazosin (brand name Minipress) and it took all of my dreams away. I dreamt nothing. (Well I’m sure I must’ve had dreams, but I remembered nothing of them.) prazosin is technically a blood pressure medicine but one of the side effects is causing you not to dream, so doctors would Rx it to veterans or others who had PTSD to suppress nightmares. Weird right?? I found out years ago that Viagra was a heart medication and now they just use it for…ya know. So while I was on the prazosin, I felt A LOT more rested. I took it for awhile then stopped because I was bummed to not be dreaming at all, and once I got off of it, my dreams/sleep went back to normal. Maybe you can ask about it?

Hi! I too have light sensitivity. Not all the time, but frequent enough to be annoying. I’ve definitely had to wear sunglasses inside my house in a dark room. I remember one time it was so bad I was wearing sunglasses and lying in my mostly pitch dark bedroom with my blanket over my eyes…and somehow it still seemed too bright! It was like the light was generating from my brain. The last two days the lights have been getting me (kitchen/dining room light, living room lamp)… guess it’s time to pull a Bono

That’s really interesting! On the forum, someone mentioned having nystagmus, horizontally, but their eyeballs weren’t actually physically moving. I myself had an experience with a doctor years ago, he shut off the room light quickly and shined a flashlight at me and said, “I have never seen anyone’s eyes do that!” I was so nervous I didn’t even ask what my eyes had done that surprised him. I wish I had asked. This response probably does nothing to help. Sometimes though, my eyes will jerk to the side. I don’t know if it just feels that way or if my eyeballs are physically moving. It happens sporadically. I thought of that just now. I never really thought much about my eyes jerking until I read this. Interesting. Maybe other people have this phenomenon?

Tell me about it!

I hate SSRI’s but I’m on several other meds so I’m not really sure now how it affects my HPPD. Before I got on Klonopin, I was depressed and tried Prozac. All it did was worsen my visuals and make me feel dissociated, so I stopped taking it after about a week. Right now I am on 100 mg of Zoloft. I don’t even think it works except to “blunt” me, which is even more depressing

Late to this post but I just saw it. I really wish I had known/thought of that. I think that’s a great idea. As I’ve probably posted about a million times on here, I take Klonopin daily (since 2009.) I take 3 mg per day, every day. Now I’m pretty screwed if someone decides to take me off of it. I think your advice is great!

I’m curious about what you all feel like when you take strong NSAIDS, especially when you are taking them often. (Or if this is just one more on the list of strange things that happen only to me, haha.) I used to fall A LOT. (To the point that several medical professionals told me it’s not normal for someone my age to fall as often as I do, and I need to see a neurologist. In fact, my meds prescriber, who is the absolute best I’ve had, is “forcing me” to see a neurologist. I don’t want to see one. I think it’s my cocktail of meds that make me dizzy and fall.) Omg sorry, I went wayyy off topic…like always. Anyway, every time I fall, it’s straight down and I catch myself with my right arm. So my right side is ALL janked up. I’ve taken muscle relaxers (hate them and refuse to take them anymore,) my doc prescribed Meloxicam which is a strong prescription NSAID… all that did was make me feel like I was stoned out of my mind and like I didn’t have a brain. Then I got an Rx for 800 mg ibuprofen, which I was taking every day for a long time. I literally thought I was getting dementia but didn’t connect it to the ibuprofen and sometimes Aleve I had been taking for my neck and shoulder. I was playing cribbage with my husband (we used to play a ton of cribbage and I’m pretty good at it) when suddenly I just couldn’t count my points. I’d look at the cards and they were meaningless. I was like a 3rd grader trying to do Trig or something. The final straw was when I accidentally pegged backwards and didn’t notice. I started bawling because I thought I was getting early onset Alzheimer’s. (Very dramatic I know, but I was scared!) Suddenly it clicked and I avoided NSAIDS and I felt back to normal. Has that happened to anyone? Do you think it’s an HPPD thing, or is it just a “me” thing? Sorry this post is so long.