AF44

Hey Yes, I just read that diazepam does have a longer half life. I’ve never been on it before, only clonazepam. When I first learned about HPPD, everything I read suggested clonazepam as the best medication to help with symptoms, so that’s all I’ve ever taken for the symptoms.

Same, dm please

I’ve had HPPD for about 24/25 years, been on clonazepam every single day for about 12 or so years, it relieved so many of my symptoms it was like a miracle drug, I was pretty much back to my normal self! I stayed on a low dose for many years but a prescriber I once had doubled my dose cuz I was having bad panic attacks (not due to HPPD.) I was like, I only take clonazepam for HPPD but he acted like he didn’t hear me or something and doubled my dose to 3 mg per day. I swear, it seems like no one has ever heard of HPPD, although they are way more open to research it now than they were back in 1998, when I got it. But whatever, I now take 3 mg per day and am fine. But if I don’t take one “on time” I start feeling HPPD symptoms creep in, so it’s like, crap!!! On one hand it has been an absolute miracle drug for me, but on the other hand, I’m horrified at the thought of what will happen if someday I am no longer able to get it. So it’s good and bad I guess.

I agree, clonazepam is better, though I will say I’ve not tried diazepam. Clonazepam works better because it has a longer half-life.

I’m so sorry to hear what you are going through. But so glad to have you in this forum!! HPPD can cause micropsia/macropsia, so if you have micropsia that might explain why everything looks smaller or more confining to you, and macropsia is what makes you “feel big” (If I’m correctly interpreting what you are describing.) I have heard HPPD can make colors appear much brighter and more vivid than normal (I have not experienced this myself, or maybe a few times and I didn’t connect it with my HPPD) Seeing geometric patterns and facial patterns is also a symptom. DP/DR is a symptom (which to me is the worst one! Ugh!) Swaying objects are common. But anyway, it sounds like you literally have every crappy, horrible symptom HPPD has to offer!! I know this probably won’t help to hear it, it’s so cliche, but I believe your symptoms will lessen as time goes on. Anxiety makes it worse, a vicious cycle, HPPD causes anxiety, anxiety worsens HPPD symptoms. I have seen a lot of people who live in Sweden on this forum, and heard different things about healthcare there. I have taken Klonopin for about 14 or so years now, and it took away at least 98% of my symptoms. Maybe you could try that? What I would do is print out pertinent, science-based information, organize it, and take it to your doctor. Try to clearly explain your symptoms if you can. Show them/let them know that Klonopin is the gold standard treatment for HPPD. If a doctor won’t listen, move onto the next. And the next. Advocate for yourself. You are not alone!!! We are here for you and so glad you found this forum!

I totally feel you, though I lucked out. I’ve had HPPD for about 24/25 years now. I didn’t know what it was, eventually found out what it was, blah blah, went to a neurologist who was arrogant and not real sympathetic and he diagnosed me with migraines. I said, “I’ve had an 11 year migraine?” (This was back in like 2009.) I think MAYBE that took him a little off guard and I told him I read that Klonopin helps. We couldn’t agree and I left the office in a huff. I was so irritated when I got home I was pacing around and looking at this HPPD forum (maybe same one as this?) Suddenly my phone rang and I’ll be damned if it wasn’t the neurologist, who still had doubts, but he’d taken it upon himself to look up HPPD on his lunch break, which I gave him mad respect for. He prescribed me Klonopin and I then began receiving it regularly through my primary care doctor. Then I chose to go to a mental health clinic where I lived. The director of the clinic (who didn’t do therapy sessions anymore) was so intrigued by my case that he wanted to treat me himself, and also record my story. (He had an old cassette recorder which crapped out the minute he turned it on, so unfortunately we didn’t get to record anything.) Anyway, he said he saw no reason I could not take Klonopin for the rest of my life cuz it was a safe drug to take. Mind you, this was what, 14 years ago or so? This was before the whole crackdown on scheduled drugs began. Nowadays I am prescribed Klonopin through my mental health clinic (I moved) and the only reason they prescribe it to me is because of all my past medical records (helped that two neurologists agreed with the medication treatment) and I think because I have been on it for so long. Also, pretty much no one had ever heard of HPPD before so it was a bitch trying to explain it. My current prescriber has researched HPPD and seems to take it quite seriously and has agreed to continue to prescribe me the Klonopin. Sooo…sorry, I ALWAYS get off-topic, since there has been so much legit scientific research on HPPD and we’ve come such a long way, and Neurologists and other specialists are taking it seriously and studying this condition, the only suggestion I can offer (which is sorta lame) is to gather a lot of pertinent information, print it, organize it, show your doctor. Tell them in no uncertain terms that Klonopin is the gold standard treatment for HPPD. Act polite and reasonable and ask if maybe that can start you on Klonopin and if it doesn’t work to clear your symptoms (which it will) you will get off of it. Then, when you’re like HALLELUJAH this shit works, enthusiastically let them know. And don’t ever ask them to bump up your dose. Tell them you want to be on the lowest dose that helps your symptoms. Hm. I’ve rambled on so long I don’t even know if I’ve answered your question or not. But whatever, I hope my advice helps a little.

I have HPPD 2 and I ended up having to wear prescription eyeglasses which definitely helped a tiny bit with my visuals.

Oh yeah, one more thing…would you know if you had definitely been bitten by a tick? Like definitively its head was still stuck in your skin? Cuz if that’s the case, I’ve never been bitten by one.

Holy Heck beefol! (About having Lyme disease.) I have always had tinnitus since I was a little girl. Sometimes it’s really bad. And definitely sometimes stuff that is at a normal volume is so loud to me I have to tell whomever I’m speaking to to lower their voice, or turn the music/TV down. Then they look at me like I’m crazy (which I guess technically I am ) and tell me they are talking in a normal voice. When those loud noises happen it hurts my brain so bad I also actually have to cover my ears sometimes. But anyway (I always get off topic) I was diagnosed with Chronic Fatigue Syndrome. I fit every criteria. But I remember when we were trying to figure it all out, think it was my mom, but she said she wondered if I had Lyme disease. I thought I did not have it because as far as I know, I’d never been bitten by a tick. I’m not what you would call an outdoorsy person. Can you tell me what your Lyme symptoms were and the specific test they finally ran on you? It would be interesting to ask for that test for the heck of it. Thanks!!

Oh I guess I’m not as bad at threading as I thought I was I’m really interested in your thoughts on Keppra and what symptoms does it take away? Is it an SSRI? I keep hearing about Keppra and was considering trying it but I swear, the thought of adding another med to my “cocktail” makes me want to jump off a cliff! I’m super sensitive to most meds anyway. I agree about the tapering thing…wth?? Every prescriber that has tried to taper me off of a med is insane. Half of them should be their own patients. When I wanted to get off my 100 mg sertraline, I had a prescriber that said, drop down to 50 for a week, then stop taking it. What!? I tried to do what she said and it was awful. I couldn’t tolerate the withdrawal effects, especially the head zaps. Felt like being poked in the head with a cattle prod zapping me every 10 seconds. I had to go back on the 100. Haha dumb as a fish! I love it! Cuz that’s what it feels like half the time. Every doc I’ve dealt with has said long term effects of klono can cause early onset dementia. I looked right at them and said, “I’d rather have dementia than HPPD symptoms.” I’m so frustrated, like you are, that I can hardly think straight anymore. Like you, I was basically a straight A student, quick with math and numbers, I could spell anything correctly, and I read like a crazy person. (I still read like a crazy person but my eyes tire and sometimes I get those weird like, reflection things under the words. Do you know what I mean?) I am always on all the medical websites and I feel like I know way more about this shit than the docs do! (Regarding meds.) But they don’t like it when you tell them stuff cuz they get all offended, like you are hurting their pride by saying you know more than they do. Which is true most of the time. What is ChatGPT 4? I’ve never heard of it. Do you know when and if you will be Rx Keppra? I’d like to find out if it helps your symptoms.

None of what anyone says in this forum is too long or boring. I personally love hearing everyone’s stories and I love all of you

I never heard of the Ashton protocol. I am currently on 3 mg per day, every day.

I wonder if your weed was laced with something.

No I really like talking to you! I totally agree I’m on too many meds. The prescribers just keep throwing them at me like candy! I have tried to get off the Depakote and sertraline and the withdrawal effects are a total nightmare! It’s so bad I just end up going back on them. And I was wondering at one point about the Buspar and the sertraline giving me a chance to have serotonin syndrome. I worry about that because years ago I was prescribed yet ANOTHER med called Trazadone. It’s an antidepressant but also used to treat insomnia. I was on 150 mg and all of a sudden I started feeling totally effed up, and I went online and my symptoms were the same as serotonin syndrome except not as bad cuz I wasn’t on it for very long. I went to an urgent care doc who said stop taking it and asked me if I had enough Klonopin to help my symptoms subside. It took like a whole week for me to feel normal. I wish I had never taken any psych drugs except the lamotrigine and Klonopin. Once you start taking all these crappy meds, it’s like you’re trapped and there’s no way out. I used to be sharp as a tack and now I feel like a stupid clod because I can’t think straight half the time. I get tired and fatigued very easily because of all the meds. That’s weird that you got bad HPPD from weed, although I have totally heard of that happening. I used to smoke weed in high school and I noticed that even when I wasn’t high, I totally had dr/dp a lot. It was annoying and a little scary but I didn’t think too much about it. We are so alike in our thinking! I told my husband that I would rather have a debilitating physical illness or chronic horrible pain rather than HPPD. It’s so freaking horrible. Oops, my friend is here for dinner so I have to go but I love talking to you and feel free to message me any time!

Hi, I found you again! I totally cracked up when you said any doc that prescribes antipsychotics for anything other than schizophrenia or psychosis should lose their license I too have a prescriber (many before her as well) that have agreed to let me have the Klonopin. I wonder if it is because I have been on it for so long that they figure the benefits outweigh the risks of taking me off of it? Also, it helped that a neurologist was the first doctor to prescribe it to me. Apparently he is well known and well respected in his field. I also had a second neurologist check me out, and she agreed I should stay on it. I’m glad you have only taken Klonopin for a short amount of time. That way it will be easier to wean off of. Compared to me, who has been on it forever. I currently take sertraline, Klonopin, lamotrigine, Buspar, Depakote, and bupropion. It seems like I didn’t have a problem with the bupropion. However, my horrible “flare” had died down a little, so I don’t think the bupropion had much to do with any of that. I am on all of these medications due to being diagnosed as bipolar, but I honestly don’t think I am. I think I had depression, Borderline Personality Disorder, PTSD and anxiety when I was a teen. Then I fell in with a really abusive guy and he was the one who I was dropping acid with like, every weekend. I didn’t really have a problem until that damn day in August. It was August 5th, 1998 and I was 19 years old, about to turn 20 beginning of October. That’s how well I remember the day I got HPPD. However, I was also taking an antibiotic for a UTI at the same time, (Ciproflaxin) which is horrible (read up on it) so I always wondered if the combination of that antibiotic while on the LSD that day had something to do with getting HPPD, or if I would have gotten it anyway. I am scared of the day when I might be forced to stop taking Klonopin, but my husband, who is awesome and somehow “gets it” even though he’s never even done LSD or anything stronger than smoking pot a couple of times when he was younger, promised me he would do everything in his power to make sure I can still get it. He’s so funny, if I’m having a bad day once in awhile I will tell him my eyes are bejiggedy and he tells me to just relax and don’t worry about housework or dinner or dinner or anything I hope you have someone like that in your life? To me you speak like a young man, but for all I know you’re an old broad like me

Oh I found you! I got static, DP/DR (which is the worst in my opinion,) tracers, afterimages, total cog fog (ended up losing my job at a bank because I couldn’t concentrate on anything) head pressure, floaters-you name it, I had it! I stopped all drugs and drank a lot to cope, but of course alcohol just made all my symptoms worse. After the neurologist grudgingly admitted HPPD could be a “thing” and Rx me Klonopin, he said the only other thing I could do was to go to a mental health clinic, which I did. (BTW, the Klonopin was absolutely a miracle drug, it took 99% of my symptoms away. I remember telling my mom, “I can see clearly for the first time in like 20 years.”) But suddenly I was told I had Bipolar Disorder and put on lamotrigine, sertraline, continued with the Klonopin at 1.5 mg. I did ask to go up a half mg. because it seemed like the effects were wearing off a bit, but then I was fine. I was on 1.5 for years on end before the zillion prescribers decided to try all sorts of different meds for my “Bipolar” which just made everything worse. (Especially antipsychotics! Tried to add those to help my depression. Needless to say, they did not work. Never take an antipsychotic.) One of my many prescribers said I had “manic panic”, meaning my anxiety was actually mania and not anxiety. He says, “I’m going to double your dose of Klonopin.” I tried to tell him that I only took 1.5 and it was for HPPD. I’m pretty sure he had no idea what I was talking about. So he doubled me up and I basically just kept taking the 1.5, then started taking 2 mg for a while, then 2.5, now 3. I have a hoard of extra Klonopin lol. I admit sometimes it seems like 3 isn’t quite enough on some days, (like if I had way too much coffee or didn’t sleep right or had a “flare”) so on a bad day I will take an extra, but pretty much 3 mg is fine. I love the phrase you used, “Living on borrowed time.” That’s what I feel like. I am 44 and I have been on Klonopin since 2009. I can’t even math right now, but that’s a long time. I’m TERRIFIED that someday I will not be able to get it anymore, since it’s a Schedule IV substance and they are cracking down hard on opiates, benzodiazepines, etc. Do you live in the U.S.? If not, how easy/difficult is it to be Rx benzos? I feel like because of the amount I take and how long I’ve been on it, the withdrawal effects would be like living in the 7th circle of hell. Anyway, sorry for such a long reply! I’m glad you replied to my post, it’s nice to talk to people directly

Double Amen!! I take clonazepam as well and it took almost 99% of my symptoms away. The only drawback is that if a prescriber tries to take me off of it, I’ll go crazy. So it’s always a worry in the pit of my stomach month to month, but what can ya do? I’ve been so negative for years worrying about the future among other things, but have decided to live in the present while I’m still functioning pretty much like a normal human being

Thank you!!! My flare finally went away and I am beyond grateful and relieved…and loving the bupropion! I go to church and am on a “prayer chain”, so it was put on there that I was having a flare up of a “medical condition.” I truly believe in my heart that all of the prayers worked. I chuckled thinking of what the congregation would think if I told them I had HPPD. They are the most wonderful people but would be like, “Huh??” I’m so glad I am on this forum and it hurts my heart to read other people’s stories and learn how much they are suffering. I suffered horribly for so many years until I figured out what I had. As a nice side story, I had been prescribed Klonopin for my HPPD my a neurologist who was kind of a jerk but was at least open-minded enough to look up the condition during his lunch break. Anyway, I ended up with a therapist and a medication prescriber. She asked me why I was on Klonopin and I told her (of course she had never heard of the condition) and I showed her that it was in the DSM. She was really cool and didn’t doubt me at all. Then one day, I was at an appointment and she looked at me and said, “I want to say thank you.” I was caught off guard and said, “Oh…why?” She replied that a new client of hers had come in with HPPD symptoms, and because of me she knew what he had and knew to prescribe him Klonopin. I was so happy that at least one person suffering from this awful condition was helped. She was a great prescriber and I miss her to this day. Anywho…love all you guys!! We will eventually figure this shit out, right!

I’ve been on clonazepam every day for 13 years for my HPPD. I’ve had HPPD for 24 years. The clonazepam literally changed my life and took 99% of all of my symptoms away. But now I live in fear month to month that one of these days, a doctor is going to make me come off of it and I will literally go insane. Does anyone know if you can slowwwlllyyy taper off without losing your mind? I don’t intend to stop taking it but I wonder if anyone has had the experience.

It’s funny…I find that if I hit my head hard on something, my symptoms flare. I also knew someone on a forum years ago that said she smacked her head on the monkey bars or something while she was at the playground with her kids. She said her symptoms flared up for a whole month. This probably doesn’t help you any, sorry, just thought it was interesting that injuries to one’s head can cause a flare up of symptoms.

Hello all! I got HPPD when I was 20 years old. It was from taking LSD. It was awful and I had a lot of tests done. I didn’t tell the doctors that I thought my symptoms were from using LSD because I was young and naive and thought I would go to jail for doing drugs. I was also hoping that by some “miracle” I had a brain tumor or something else wrong, but no doctor could ever figure it out. I resigned myself to the conclusion I had given myself drug-induced brain damage. Then, years later, I was looking up symptoms and stumbled across a page on HPPD! It was a real thing! I was so happy that I cried. Blah blah blah, got on Klonopin, worked awesome. I take 3 mg per day, every day. I’m lucky to be able to get it but scared that someday I won’t be able to have it and I’ll go literally insane from withdrawal effects and rebound HPPD symptoms. Anyway, sometimes I have “flares” of my symptoms despite being on the Klonopin. A lot of times they only last around a week-ish and I have a pretty good idea what caused them. However, for over two weeks I have had the worst flare yet and I can’t pinpoint the cause. It’s really making me miserable. It finally went mostly away and then I was started on Wellbutrin and a few symptoms are back. I have no idea. I love the Wellbutrin because I was having a terrible depressive episode, so I don’t want to stop taking it, plus the horrible “flare symptoms” started even before I was put on Wellbutrin. Has anyone ever had this happen to them?? I’m terrified it won’t go away or that it will take a long time to go away.