WTF

[Spartan]

This is bullshit 

People with anxiety depression are being given psychedelics 

Meanwhile chronic sufferers hallucinating 24 7 on the verge of suicide cant even get a fucking benzo  

Fuck this shit 

[AF44]

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.

[Spartan]

That is awesome and very helpful! Thankyou 

[tomvillen]

They really are creating new patients... I don't want to imagine what would they tell to the subjects that got HPPD after the official session with psychedelics... I bet they would tell them that it's just anxiety.

[Hall89]

Well, seeing what benzos does to the brain long term, in most cases loses it's effect rather quickly, causes physical dependance fast and real nasty withdrawals for most, it's not that strange.

And looking to the studies that has been done on microdoses of psilocybin in a clinical setting si far, one can't deny it's efficacy and safety profile, or as long as one doesn't mix it with other 5HT2-a acting drugs, which most definitely increases the chances for this hell of disorder, dpdr etc. From what we know so far, it's a much safer alternative than antidepressants, which imo is poison.

 

But i feel your frustration mate and i can't imagine the hell you're going through now. But did Klonopin even do much for your symptoms? I remember you saying that it only took the edge off.

[Hall89]

On 8/21/2023 at 4:37 PM, AF44 said:

and if it doesn’t work to clear your symptoms (which it will) you will get off of it.

Sadly it doesn't for everyone, especially not long term because of tolerance (vast majority from what i've gathered). It's a real slippery slope. I so regret not fighting harder for Keppra before trying long term treatment with Klonopin when my Lamotrigine gave out after two years, but my doc looked at the side effects on both of them and read some in the HPPD litterature and wanted me to try Klonopin first. But now, 3½ months later i'm physically dependant to it. So if Keppra works, which i soon will be prescribed, i have a long time weaning of it ahead of me with the Ashton method. Hopefully it won't be too painful with it.

 

PS, i've been talking to a guy on FB that has as bad HPPD as one can get it, and for him neither Lamotrigine, Keppra or Klonopin had any effect, but Xanax takes away 70-80% of his symptoms, which is real wierd. He's been on it 10 years now, but because of tolerance, it only works for like 3 hours now, and the doc doesn't want to increase his dosage, so he can only take it 3 times a day, so he basically has crippling HPPD 50% of the day and the other 50% relief.

Edited August 28, 2023 by Hall89

[AF44]

Omg that’s terrible! Yep, definitely weird that the other meds didn’t work, but that Xanax did. I heard Xanax has a short half life so I guess that’s why the effects don’t last very long. Well, I guess 50% of relief is better than nothing The Klonopin works for me. But I had a terrifying panic attack today because I read about the Ashton protocol online today (just in case I eventually can’t get Klonopin anymore.) It sounds horrifying (and that’s trying to get off of it without having HPPD!) I even took a screenshot of the withdrawal effects you supposedly get while you are tapering: splitting headaches, constant nausea and vomiting, severe panic attacks, hallucinations and psychosis, delirium, uncontrolled tremors, and some vague mention about “danger to the physical body.” Like what the hell!?? And that was inpatient taper. With a 90% success rate. What does that even mean? What the hell happens to the other 10%? They go insane and live out their lives in a mental institution? Klonopin made my life so much better, but a part of me wishes I had never gotten on it. I knew withdrawals would be bad, but I didn’t know they would be THAT bad! Plus the HPPD would come back on top of everything. It would be like living in the 7th circle of Hell. I haven’t gotten on here in a couple weeks, but now I’m feeling kind of disheartened and frightened. And guess I need a pep talk lol

[Hall89]

On 9/6/2023 at 1:35 AM, AF44 said:

But I had a terrifying panic attack today because I read about the Ashton protocol online today (just in case I eventually can’t get Klonopin anymore.) It sounds horrifying (and that’s trying to get off of it without having HPPD!) I even took a screenshot of the withdrawal effects you supposedly get while you are tapering: splitting headaches, constant nausea and vomiting, severe panic attacks, hallucinations and psychosis, delirium, uncontrolled tremors, and some vague mention about “danger to the physical body.” Like what the hell!??

Don't think you have to worry about not getting Klonopin anymore, in worst case scenario there's Dr. Steven Locke in the US that definitely will prescribe it to you if you become his patient and tell him about your success with it. But the list of withdrawals is a list of POTENTIAL withdrawals that one can experience, so it doesn't mean that one will get them all. A slow taper with a cross-over to Diazepam doesn't have to be very hard at all, but it's different for everyone. Those that get real severe withdrawals are usually the ones that have abused it for years and then go cold turkey or wean of it way too fast. Below is a quote from the manual that you might've missed:

"It is sometimes claimed that very slow withdrawal from benzodiazepines “merely prolongs the agony” and it is better to get it over with as quickly as possible. However, the experience of most patients is that slow withdrawal is greatly preferable, especially when the subject dictates the pace. Indeed, many patients find that there is little or no “agony” involved."

But yes, having HPPD will make it harder, since the withdrawals will results in more excitatory neurotransmittors, primarily glutamate, and that will temorarily worsen the HPPD. So yeah, going of a benzo with HPPD will be tough, and i'm certainly not looking forward to it if Keppra works (will be prescribed early next month), because then i will have to start to wean off it. But for now the Clonazepam is the only thing keeping me alive, sadly i have to up the dose around every 6th week though because of it losing effect. I started at 1.5 mg at the end of May, and now i'm at 2.25 mg. 
 

On 9/6/2023 at 1:35 AM, AF44 said:

With a 90% success rate. What does that even mean? What the hell happens to the other 10%? They go insane and live out their lives in a mental institution? Klonopin made my life so much better, but a part of me wishes I had never gotten on it. I knew withdrawals would be bad, but I didn’t know they would be THAT bad! Plus the HPPD would come back on top of everything. It would be like living in the 7th circle of Hell. I haven’t gotten on here in a couple weeks, but now I’m feeling kind of disheartened and frightened. And guess I need a pep talk lol

It means that 90% of her patients became benzo free, and i quess that the other 10% gave up and continued taking their benzos. I hear you! But i envy you, because i wish that my Clonazepame could continue working for 10+ years against my HPPD without having to up the dose like it has for you, which quite frankly is a miracle, and i'm certain that many with severe HPPD would as well. Personally i'm not functional without some med taking the worst symptoms away, so for me it's literally between life or death. 

Edited September 10, 2023 by Hall89

[AF44]

Hello!

Thank you so much for replying. I always catastrophize. That’s what a therapist told me years ago. She said instead of going from point A to point B, I jump from point A to point Z Like, immediately to the worst possible outcome. My husband says the same thing. This is what I pictured: my prescriber apologizing for not being able to prescribe Klonopin anymore (for whatever reason.) Me in a mental ward trying to wean off of it. Rolling around on an uncomfortable bed with a constant “splitting headache,” never-ending nausea and diarrhea, seizures, convulsions and psychosis. (And HPPD symptoms, of course.) Finally living out my days as a drooling wreck in a wheelchair because my brain can no longer function. Thank you for bringing me back to reality! 
I think I did look up Steven Locke but he only has a license to practice in a few states (none of which are mine.) So I don’t know if I could even become his patient if worse came to worst. But if worse did come to worst, I would definitely reach out to him. 
Hopefully you are doing well! I’m excited to hear how Keppra works out for you. I really hope it does the trick. 
Today was a bad day because for one, I am getting prescribed 2 mg pills now to split in half (to equal 3 mg per day ostensibly) and the pills are so soft I can never cut them evenly and a lot of times they crumble. I’ve tried 4 different pill cutters and even looked on YouTube. So I don’t think I’m properly getting 3 mg through my system each day. It’s REALLY frustrating and I’ve had to dip into my “stash” of extras (1 mg tablets) and I don’t want to keep doing that. Also I pigged out today on SO much junky food and read a book all afternoon and for some reason it amplified my symptoms. Especially the DP/DR. This is why I don’t read or watch TV for hours on end like I used to, especially during the day. It makes me feel so disoriented. And when I pig out it makes everything worse for some reason. I think it’s too much sugar. If I eat too much sugar, the next day my symptoms will kind of flare up. Is that weird? 
I had to take 2 extra 1 mg Klonopin from my stash and for some reason I still feel out of it. Probably part of it is eye strain. 
Well, thanks for listening to me whine and freak out I guess if I can’t freak out to you guys, who can I? Love you all xoxo