AF44

Thanks! What did the Gabapentin do to you, out of curiosity?

Wow, thanks so much for that! It makes a lot of sense to me and you are obviously quite intelligent and well-informed. I’m looking forward to watching this YouTube video. I have been on clonazepam for over a decade. Interestingly enough, after using LSD multiple times, I had very slight visual symptoms that never bothered me at all, I just thought it was a little weird and figured it was something that happened because of LSD use. The trip that tipped me over the edge into full blown HPPD was a HORRIBLE trip! I can’t even describe how bad it was and how terrifying. I was also taking an antibiotic for a UTI at the same time, Ciproflaxin. That stuff is poison in and of itself. I always wondered if the combination of the two is what caused my terrible HPPD. Sorry, I might be veering off the path of what we were talking about in the first place. I’ve always had a wandering mind and it’s worse the older I get! Thanks again for all the great info!

Hello all! I have a question: for those of you that have tried lamotrigine for your HPPD, how effective was it?

Oh btw I forgot to ask, does it help with the weird dizzy/internal vertigo/swaying feeling?

Is active vitamin b6 the same as taking an OTC supplement, or is it something different?

Not that this has much to do with your question (sorry!) but your story reminded me of when my husband was put on Cymbalta. It’s an antidepressant that is supposed to also help with peripheral neuropathy (which my husband has.) The side effects were bad so he stopped taking it cold turkey even though I told him that was not a good idea, that he should taper off of it; he didn’t listen because he’s stubborn lol. Anyway, he was out of commission for literally about a year. It was HORRIBLE. I can’t remember all of his symptoms but he was having constant muscle twitches, couldn’t think straight, was miserable. He sat in his recliner 24/7. He could not work. We had to cash out his 401k or we would have been screwed. Like I said, it took about a year and he started feeling back to normal and got a good job that he still has and has excelled at. But…sometimes he gets like brain fried and kind of feels like he did back when he quit the Cymbalta. I don’t think he has or got HPPD from Cymbalta but it did SOMETHING horrible to him that to me sounds similar to those “fried” symptoms I get. I’ll have to ask him if he had visual snow or other HPPD symptoms because now I’m curious.

No. I wish!

Same!!

That’s very true. Last Thursday I had to take my son to the ER. We ended up getting home at 4:30 in the morning. I was fried. I set my alarm for 9:30 am so I didn’t sleep all day and mess up my sleep schedule, and felt like crap. Once I took a nap though, I felt better. There is no way I can stay up all night.

I still have symptoms as well but I’m mostly normal feeling. I do get flares though that are REALLY bad. I hate it.

If you don’t mind me asking, what sort of cognitive issues?

Hi, This sounds really stupid but when I first read “ear worms” I thought you meant you literally had worms in your ear caused by lamotrigine But you mean ear worms like when you get a song stuck over and over in your head? What sorts of sounds got stuck in your head? I have no idea about Keppra, I have never tried it, but a lot of people on here talk about it. So I’m of no help but was curious when I read your post.

Omg- I did LSD many times prior to getting HPPD. I had mono as a teenager and I heard the virus stays in your system for the rest of your life, dormant. BUT-the time I took the LSD that caused my HPPD, I had a UTI and was taking the antibiotic Ciproflaxin. So I DID have an active infection at that final trip. Is that what pushed me over the edge? I always wondered. I also wondered if it was the combination of taking Cipro and LSD at the same time. My bf at that time said, “Never mix street drugs with prescription drugs.”

Hehe yeah I’m at the 26 year mark-lucky me! I will say that before I was put on Klonopin, my symptoms definitely improved, like kasco said-in small increments. Sometimes I would go days to a week without being bothered by symptoms. Then I would have a flare, but eventually go back to baseline. I heard that it’s different for everyone though. My motto is- there’s always hope!

I literally have problems with every single supplement I have ever taken except for Vitamin D and fiber. I could not even take prenatal vitamins during my fourth (and last) pregnancy because they exacerbated my HPPD unbearably. I was iron-deficient at one point and couldn’t even take iron supplements. Forget Omega-3 fish oil. I haven’t tried Magnesium, I’m too scared to take anything. Oh I have a question- do y’all have a problem taking Pepto Bismol? I know that sounds stupid but I can’t even take that without it messing me up, maybe because of the aspirin in it? Anyway, I totally believe you are also very sensitive and yes, most likely the Vitamin C caused a flare.

I’ve been on Klonopin every day for 14 years. So do you think even if I went through a proper withdrawal, all of my symptoms would return permanently? I couldn’t handle that

Maybe the only way they could is if they monitored our reactions to certain medications? Then they could record our symptoms. But it would still not be physical proof to them because they can’t see it. Also, I guess it probably wouldn’t be good to have different meds given to us because it would mess us up more than ever. Even a person without HPPD would get really messed up if doctors experimented on them with psychotropics.

Yeah when I first discovered that I had HPPD, I asked my neurologist if I could have a qEEG done. He said we didn’t have anything like that here (I guess meaning in the part of the States we live in?) Does a PET scan show anything?

Yeah we should all stop talking about going blind

I’ll have them all removed

I am also a long-term sufferer, about 26 years. My closest friend knows that I have HPPD and I jokingly (or maybe half-jokingly) said I wish I’d go blind and she said, “I don’t think it would change anything, since you still see stuff with your eyes closed.” I am so glad you have your parents as a great support. I have my husband…no clue what I would do now without him. I was functional enough I suppose, through my 20’s and 30’s, I had no idea about HPPD but knew my issues were due to my last acid trip. Sometimes I didn’t even notice it, then it would get bad, then go back to baseline, etc. So, when I was like 33(?) I was addicted to Red Bulls and was drinking them every day. Also exercising my buns off! Whaddya know…everything got worse! (Imagine that.) Like, intolerable. I Googled of all things “caffeine overdose” because I figured maybe I OD’d on the Red Bull. I went through the maze and ended up on a Wikipedia page about HPPD! I couldn’t believe my eyes. (I can never believe my eyes, har har.) So I was like “Great! Klonopin is the treatment!” I immediately told my family, and went to a neurologist, long story about him not believing me but then grudgingly looking it up and agreeing to prescribe me the Klonopin, etc…now I’ve been on it literally every single day since. Not one day without. And I still sometimes get flares, like now. I thought my recent flare had subsided, but it’s back. So I was really affected by what has been happening with you, because I know it would literally be Hell on earth if I were to be taken off that medication. I’m always keyed up each month when it comes time for my refill, nervous, sad thinking about the future if I am cut off. My family needs me, I have grandkids (that makes me sound so old! I’m “only” 45. Maybe that is old.) Yes, I didn’t even think about the expense of seeing someone like Dr. Locke. I can’t afford that either. Now I have forgotten my entire point. I swear it’s the HPPD. I get so forgetful and foggy that I start off trying to respond to what was written to me, then end up talking about something completely different and unrelated and forgetting what the original convo was supposed to be about. Ugh! Sorry. I guess my whole point is that I really hope you start feeling better and I will be praying hard for you

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.