stormbel

I sympathise, StateOf Regret. Since my last post, I agreed to go into the psychiatric inpatients clinic, in the hope that once they could keep me there under 24/7 observation, they may FINALLY agree to try out Keppra, Lamictal, or some sort of med. Fat chance. They even refused to call this condition HPPD. Apparently here, it is simply 'leftover effects after hallucinogen intake'. I complained forcefully, for nearly a week, that it's my symptoms that are dragging me down, especially since the compulsory MRI scan to go inpatient has made them worse. How would they feel with unrelenting double vision, after images, trails, visual snow, star bursting etc, oh, and also the new one, tinnitus since the MRI? Of course, these terms were also unfamiliar to them, they refused to google images of them and over my stay, I had to describe them to bemused individuals for nearly a week, all to no avail, while the others on the ward were handed out their various meds. Icing on the cake: I have now been labelled as a possible Histrionic! Just because these psychologists were out of their depth and shit scared to treat my symptoms (they already made them worse with Mirtazepine), they suggest that I'm either exaggerating just to get attention, or simply making it all up! They took no notice of my qEEG (cost 400EUR privately) or MRI results either. Not even sure if they bothered to look at them. I was supposed to be in for 8 weeks. **** that. I'm happy to be out of there! You're so lucky to have such a progressive doctor. Give the psychs a wide berth!

Thanks for the reassurance, China. Regarding the binaural beats, I still don't know what frequency I listened to. ANYONE OUT THERE WHO COULD HELP WITH THIS ONE, please??

I was recently made to undergo an MRI scan, to rule out head injury before further inpatient treatment, and hopefully SOME kind of officially prescribed supplement/medication. At the moment, the psychologists are refusing to administer me with anything, and have taken me off all supplements, even Omega 3! To cut a long story short: ever since the scan, my occasional tinnitus has become much more frequent and intense. The psych who prescribed the scan, of course refuses to take this connection seriously. The experience itself was very loud, despite headphones. My symptoms have already been worsened permanently by listening to a session of binaural beats for PTSD on Youtube. HPPD clearly sensitises many of us to to sound. I had read that MRI can help to relieve depression. Not with me. I just feel very depressed (and angry) that this was forced upon me for no good reason . ´I wish there were a way to reverse this mess. I'm hoping this symptom will gradually calm down. Anyone out there who's had a similar experience with MRI?

Jimmy, a month before I got HPPD, I had my wisdom teeth removed under local, (albeit only 2 at a time). Although the dentist admitted he didn't have exactly the right pliers (????!!) it was bearable. The worst was on day 2 after the OP, when my supply of 'Dolormin' (Ibuprofen + aspirin DL-lysine) ran out. I don't know, of course, how these painkillers, or any others, will affect HPPD, but I would recommend you try to get yourself a supply of CBD oil. I've found a good supplier in Europe: http://www.ebay.de/itm/CBD-oil-high-concentrated-medizinales-cannabis-cannabidiol-0-thc-100-legal-/321365819432?pt=Krankenpflege&hash=item4ad2e54028 It helped me a lot with anxiety. I understand it works best with pain, though. Expensive, but worth a try! After a nasty week, your pain will be almost gone. Good luck.

God bless you Ghormeh Sabzi! My trails are not there either, temporarily!

No, I wasn't meditating, I was just looking at the screen. But I suppose, as I was listening for half an hour, (as instructed), I may have been in some sort of altered mental state?

Thanks, StateOfRegret. Do you have any more info on this software? If baseline symptoms can be permanently worsened by sounds, this points to a link with temporal lobe/seizures, doesn't it, for many of us? Is there anyone here with sound tech know-how who could possibly help with this: it's completely beyond me!

I'm posting this because I think it may add to what we know about what triggers HPPD and what to avoid. I strongly believe that I was primed for HPPD by anxiety and cumulative trauma. I started looking for help with this and came across binaural beats on youtube, specifically this one for PTSD: http://www.youtube.com/watch?v=JchKezfJcCw, I listened to it back in November last year and it triggered a full blown second trip: (scary hallucinations etc.) Since then, all my symptoms have been worse. I now have new ones too: severe trails, which I never really noticed before. Visual snow is much thicker and there's occasional tinnitus. I've begun to notice DP, too, but that's probably related. I've read that many of us have found Neurofeedback helpful and I'd like to try it, but this experience has really put me off. What I really need to know is precisely which wavelengths I listened to. I've contacted the organisation that posted this on youtube, the MP3 Meditation Club, but they tell me that most of the videos which link to their website are published via their affiliates and they don't have any control on them. I've asked for contact to their affiliates, explained why I need this info: research purposes only, no liability etc. but they don't reply. I've had advice from another source to try this software http://uazu.net/bavsa/ to identify binaural beats wavelengths. If it was Isochronic tones instead, apparently I'll need some sort of sound editing software, and count how many beats there are per second to get the frequency. This is way to complicated for me. If anyone out there can help, I know some of you are real technical wiz, then PLEASE do. If sound waves can trigger HPPD, then maybe they can relieve it?

Yes, it can't do much harm, can it, a bit of plant bark? I'm having great difficulty (given my age and conservative German doctors) getting a script for ANY anti-depressants. Fluoxetine screwed me: (looking back, pre-HPPD, I realise it was already giving me double vision and Strattera made bits of the wall disappear). Prescribed mirtazapine made my visuals worse and since then, as the docs know nothing about HPPD, they only trust themselves to hand out neurexan (diddly squat) and now relora. I've been trying for months now to convince somebody to prescribe Tianeptine but Emanupil sounds awesome. Looks like the wait for that will be longer, hey? So it's tree bark for the time being. Thanks for your reply.

This is the first time I've posted an idea, so I hope this is this right place for it and that I'm not just repeating something that's already well known. Going back to -mg's post about PTSD and cortisol, I assume most people on this forum have some pre-existing anxiety issues, or at least ones which stem directly from their HPPD symptoms. I have a history of cumulative stress from various concrete unfortunate issues from age 8! And I'm pretty sure that the result, (what I can really only think of as PTSD), is what primed me for HPPD, from just one single bad trip. I also have ADD (type 5/7, self-diagnosed from Dr Amen's website: http://www.amenclinics.com/conditions/adhd-add (bottom of page). He recommends 'Relora' for the anxiety-related issues specifically related to this. Relora reduces cortisol: http://www.ncbi.nlm.nih.gov/pubmed/23924268. Hey, I thought, something that will treat my ADD and anxiety all in one! So, I ordered some. Like most of us here, I am petrified of taking anything that may worsen my HPPD symptoms, so before taking it, I googled 'Cortisol and PTSD'. What came up was a real surprise. I always thought stress releases cortisol. It does under moderate stress but severe stress (PTSD) often reduces cortisol levels. It turns out that PSTD dysregulates the basal cortisol level so that it can go either way. One of many studies out there: http://www.med.navy.mil/sites/nmcsd/nccosc/healthProfessionalsV2/reports/Documents/ptsd-and-cortisol-051413.pdf I know that raised cortisol levels cause cells in the hippocampus to shrink, but what about lowered levels? This is all way over my head. I am only 16 and struggling. I know there are various ways of measuring cortisol: blood, brain etc. I am just trying to work out whether I should take this Relora or not, but I thought maybe one of you out there who is really qualified to understand this stuff could maybe consider this cortisol issue and come up with a theory about why so many of us suffer such high anxiety!

I see! I'll definitely ask the neurologist about this.

Which kind of scan shows hppd?

I'm talking about doctors and friends, sorry for the misunderstanding.

I'm happy to say that my family is very understanding, that's not a problem. And yes, I'm sure everyone would be furious. I'm in despair because the doctors are so ignorant and refuse to give me any medication that may be helpful. They don't understand that it's a visual thing. Also, I had an EEG scan done and it came out normal, so they just sent me home empty handed. I've heard that this is the case with a lot of people with hppd.

Thanks for the quick reply! Knowing that I'm not alone with this keeps me going. I'm desperate to be able to think straight again so that I can start studying. I have tried L tyrosine and I found it helpful with anxiety. It gave me a lift. It might not suit everyone but I believe everyone who has anxiety and depression should give it a shot!!

Thanks for the quick reply! Knowing that I'm not alone with this keeps me going. I'm desperate to be able to think straight again so that I can start studying. I have tried L tyrosine and I found it helpful with anxiety. It gave me a lift. It might not suit everyone but I believe everyone who has anxiety and depression should give it a shot!!

Hi everyone! I'm so glad I found this website. I don't know where to begin as my life story is so complicated. I have had a run of very bad luck; event after event. I'm 16 and I have had hppd for 6 months. It all started from taking 150 morning glory seeds (LSA) as I wanted to take a break from reality in my damaged, broken, abused state. I had no idea about hppd as I had never heard of it before, they didn't even mention it during a drug education talk at school. Instead they were talking about the dangerous effects of weed, alcohol, etc. (I wish I had become an alcoholic instead, believe me!) I have PTSD, clinical depression, ADD and extremely bad anxiety. I have been bullied most of my life because of a learning disability. This had a huge effect on my self esteem. It's also the reason why I turned to drugs. I took these psychedelic seeds after many traumatic experiences, and I was so excited reading about them because you could just buy them at a garden center... If I only knew what would happen at that time! I didn't have a clue that it was related to anxiety. I also smoked a lot of weed after this, every day. I also took ritalin 20mg. I had no idea that this makes it worse, I didn't even know what was wrong with me. I thought that I was just going insane. Now I have had to drop out of school because I couldn't possibly go on like this. Reading is so exhausting for my eyes and they keep going out of focus. (double vision also) and I have severe brain fog. That was my breaking point. All I ever wanted to do was to finish school because it was a huge part of my trauma and I wanted to leave it behind me. I have no one to talk to as I'm told that I'm lying. The doctors gave me Mirtazapine for my anxiety, but it just made all the symptoms worse. The doctors don't take me seriously, and they told me that they wouldn't take any suggestions for medication when I asked for keppra. I have a lot of symptoms: bad visual snow, afterimages, trailing, starbursts, light sensitivity, blotches of colour on white walls, things melting into each other or disappearing in the dark, tunnel vision, and when I look at the light and then look at something, it starts to disappear. I have not smoked weed for 3 months and it's not getting better. I can't bear the visuals 24/7 anymore and I'm so scared that it will never go away. I miss my old self so much. I wish everyone the best. Thank you so much for taking the time to read this.