Hall89

On 12/7/2022 at 8:59 PM, Beefol said:

@Hall89 how are you doing now, after that long time? Do you still have symptoms? 
 

greetings from germany!

It's all the same, but Lamotrigine took away the head pressure, tunnel vision, visual hallucinations, 90% of the brainfog and decreased my dr, it didn't do anything for the rest though. So it savedmy life, but it seems that my body is building up a resistance to it, so it feels like my life is coming to an end...

Because SSRI's and many other antidepressants binds to the 5HT2a receptor, just like the recreational drugs that can cause this, that is, psychedelics, cocaine and THC. These psychiatric drugs also possess hallucinogetic properties, >1% actually get hallucinations as a side effect from SSRI's. So antidepressants can in rare cases cause HPPD by itself, so it's not wierd that it worsens it for some.

On 3/31/2023 at 10:05 AM, Sara2 said:

@Hall89 how long did it take for the nights to improve? I’m 3 months in..it has gotten better but I still struggle with the sleep and have very vivid dreams 

My vivid dreams went when i got on Lamotrigine around week 8 after the onset, so did the head pressure, visual hallucinations and 80-90% of my brainfog, it didn't do anything for the rest of the visuals though, that is, vs/static, halos, glares/starbursts, ghosting, palinopsia, floaters and bfep.

23 hours ago, Jay1 said:

I've used it long term, but not every day... 

I tend to do something like:

Thu 1mg

Fri 1mg

Sat 1mg

Sun 1mg (occasionally, if needed for a social event)

3-4 days off

Then have 2 weeks off every 3 months to fully clean the system. 

If needed, I sometimes up the dose to 1.5mg for really anxiety inducing events. Likewise, I sometimes take 0.75mg is I need something, but know it will be easy enough to get through... 0.5mg doesn't really do anything and 2mg+ shows no significant improvements either (and just makes me sleep).

One thing that took me a while to get my head around is it's best used it to treat anxiety, not the visuals and dpdr... When I first got my script, I would take 2mg as that was the dose that would really help my visuals (while also helping anxiety and dpdr)... After a while, I figured out that if I decrease the anxiety using 1mg, I didn't really care as much about the visuals, that were a little bit reduced, but not like the 2mg dose. This really helped to stay away from tolerance, imho.

This approach has worked for me for about 15 years now, with little to no sign of tolerance or withdrawal (I had 6 weeks off during lockdown and didn't notice any issues other than my standard hppd/anxiety). I can't really begin to say how much this med has improved my life.... social events, work events etc have become so much easier and just knowing that I have the med on hand, if needed, actually reduces my anxiety. It just needs to be treated with a lot of respect.

I'm curious! Has it affected your memory or cognition overall? You don't get sleepy at 1 mg? Do you split it and take 0.5 mg in the morning and 0.5 later in the day?

Good thread mate! So if i got it right, you're on Keppra, Tiagabine and Propranolol? Have your VS actually reduced by 50%? It's not that you just have gotten used to it after all these years?

47 minutes ago, blaztie said:

Okay I see! Have lamotrigine helped you with "DP/DR"?

Should I continue with lamotrigine for my DP/DR & Visual snow or is it useless for these symtoms?

I only got mild dr with my HPPD, and it didn't do anything for that, but my dr isn't constant, i get those feelings now and then. I have however read about plenty that have had those symptoms reduce with lamotrigine, for some the visual snow does as well, it didn't for me though. So it's worth a shot, it's one of the more tolerable anticonvulsants and serious side effects is very rare, i didn't get a single one.

Since your HPPD has improved i wouldn't touch ANY recreational or medical drug that binds to the 5HT2-a serotonin receptor, like antidepressants, because in rare cases SSRI's can cause HPPD to begin with. And Lamotrigine helped me ALOT. It took away my brainfog, head pressure, regular visual hallucinations and vivid dreams that many with HPPD gets. It didn't do anything for the vs, halos, glares, afterimages, tracers, floaters, bfep, ghosting and tinnitus though, and from what i have gathered, it doesn't for most.

1 hour ago, Spartan said:

Hi Jay 1 that is super helpful and insightful.. thankyou 

I have been using for approx over 1 year now. 

I had some extremely traumatic and stressful situations take place and due to this increased my dose and started using on a day-to-day basis to get through... 

Im.currently on 2.5mgs daily.. reduced from 3 with some withdrawals tho pretty much all ok now. 

II know I will  get down to 2mgs when the time is right.. and Likley continue to taper from there.

Tho will just keep on keeping on for now. 

I remember you sharing your great regime with me some time ago now though I slipped...

Anthony that's just how is is for now. 

Many thanks again!!! 

Best regards 

 

 

Did it improve your visuals? Also, your profile picture is HORRIBLE haha!

So, i got this hell of a disorder february 21 -21 and after six weeks with it i managed to get prescribed Lamotrigin, which took away the brainfog, head pressure, regular visual hallucinations, well, everything except the static, halos, starbursts/glares, ghosting, bfep, floaters, palinopsia and mild tinnitus, so i atleast became functional. As a plus it also pretty much cured me from my aura migraines. Anyways, i've been on 200 mg for the past 11 months, but three weeks ago i woke up with an aura migraine, which was kind of a chock, and i got another one just two days later and som regular headache two days, which i normally never head, but since then i haven't had any more migraine or headache. Last week i got hit with a brainfog, mild dp and my pheripheral vision felt a bit off, but this passed later in the day. A few days later my visuals that the Lamotrigine did not take away got like 20-30% worse, and i got in to a panic, which you might understand. This lasted the entire day and the day after it was gone. But yesterday morning i got hit with the brainfog etc once again and it's still there today. So do you guys believe that this is my body building up a tolerance to the Lamotrigine?

The thing doesn't make me 100% certain of it is that when i got HPPD i was on 20 mg of Citalopram and had been it for nearly 14 years (suspect that the combo with THC is what caused it), so when i found out that SSRI's in rare cases can cause this it, i started to slowly taper of it, and today i'm at 5 mg. From 20-8 mg was quite easy, no mentionable withdrawals, but after that i got pretty severe anxiety and insomnia 4-5 days after each 0,5 mg decrease that lasted for a couple of weeks, which is common, since the lowest therapeutic dose gives around 80-90% of the effect. Anyways, once the withdrawals after my decrease to 4,5 mg went away i stood on that dose for a few months and was stable, but when going down to 4 mg all hell broke loose! I got hit with severe brainfog, feelings of unreality and 10/10 anxiety and my vision felt off, like i had difficulties focusing on things. These are all common withdrawal symptoms, but it was unbearable, so i backed up to 5 mg and after a few days i got better. So now i've been on 5 mg since december, so maybe these are a late onset of withdrawals? It doesn't explain the migraine though. Also, before all this started in early mars i had been splitting my 20 mg pill (has a score) and then cut away a piece of the pill, throwing the rest of the 10 mg piece away (use a precision scale). But i suspected that the active substance isn't even in the 10 mg piece, so maybe i got 3 mg one day, 8 another etc, so just a few days prior to the migraine i changed the way i did this, so instead of throwing away the rest of the 10 mg piece, i simply cut it in half, so that way i guaranteed got 10 mg in my system over 2 days. So maybe this is a reaction on getting a more stable dose in my system? For all i know it can be higher or lower now. What do you guys believe? Also, i haven't seen any of the visual hallucinations that i did prior to going on Lamotrigine, so that gives me hope that all this is because of the SSRI.

I'm literally scared shitless here and see the end closing in, because Lamotrigine literally saved my life, if it hadn't been for that i would with a 100% certainty be dead now. The past couple of days i've started preparing for the worst, because there is no way i will live with those symptoms on top of the typical VSS ones. God i'm so frustrated over getting this disorder, especially since i got it from trying to self medicate insomnia and back pain with cannabis, so it sure backfired.
 

On 7/20/2022 at 10:58 AM, Akshay said:

Vss has funding bro, they actually found a area of the brain which is effected in vss, but still they are not able to figure out which it's malfunctioning there, check out visual snow iniciative . I truely belive if they find an cure for vss it can be used to people with hppd

Yeah i follow the VSI and have read the research, and yes, maybe they share some pathophysiological mechanisms, i hope so, but i'm sceptical. And i don't want to be negative, but don't hold your breath for a "cure", there's no money in that, our hope is a treatment. 

For those that doesn't know, the study is on ice because of lack of funding (big surprise there) and the lead researcher Wei He has jumped ship.

On 5/31/2022 at 4:04 PM, jls274 said:

I'm not sure that the symptoms ever truly just go away, but they do improve and become less severe, I can personally attest to that. I am a bit of an outlier in how I have dealt with this since onset in 2002. Big mushroom dose left me with horrible, crippling really, dp/dr, visual snow, tracers, floaters, negative images when staring for mere seconds at an object, depression, anxiety, and just utter hopelessness. But over time (around 4 years after onset) I was able to go full days without even really letting the symptoms affect me, and even days where I barely noticed the symptoms. It was at that point I actually felt courageous enough to trip again and it was wonderful...so much so I have tripped roughly 6 times since my hope onset in 2002. ...but again I didn't try that until around 2006. What really gave me symptom improvement for whatever reason was tramadol. That drug literally saved me from suicide. I did not want to go on living with my symptoms on a few different occasions, but after starting tramadol, I have not had a single day where my symptoms overwhelmed me or even really shook me at all. They are still there but to such a mild degree that it doesn't even remotely affect my life. I have had a few serious relationships in this span and none were destroyed or even moved negatively by HPPD. The same cannot be said for the relationship I was in when symptoms first arose. I have a wonderful fiance, I was able to graduate from university of Texas with a degree in political science and one later in accounting and also was able to graduate law school in 2010, though I do not practice and have not sat for my state BAR exam. Those things were a fucking fairy tale at best back in 2002-2005. And again, I am not saying I am symptoms free, but I CAN AND WILL SAY UNEQUIVOCALLY that symptoms will over time lessen in severity and the human mind is remarkably nimble and will adjust to your new normal accordingly, it just takes time and a positive attitude. Do not give up and do not believe that you are forever stuck in the miserable state you find yourself in when symptoms of HPPD first appear. Your mind took a fucking wallop (yes, that is the medical term) and it will take time to heal and adjust, but it will. Have faith. I am nobody special, trust me, and I have been through some of the worst symptoms this shit has to throw at someone and I am here to tell you that my symptoms have improved, and if mine have, then it is possible that symptoms can improve for anyone going through this. Just try and stay strong. Fill your life with things you love and enjoy and do your best to find the positive in everything, including your symptoms. Stay strong you guys. Much love to all

So you got this full blown and almost ended up killing yourself, then you decide to trip again once better. There's stupid, and then there's that. I don't even...

If you had used cannabis or psychedelics prior to starting SSRI, i'm pretty certain that you have those to thank for it. The SSRI was probably just what made a full bucket pour over.

On 5/7/2022 at 6:41 AM, Tsunami said:

The cause of my HPPD was taking 3 tabs of what I thought were LSD (actually nBOME) at once, which led to me tripping for 24 hours straight and then experiencing psychosis for a day after. It was pure hell for the first three months and it felt like my brain had become 'fried' for a lack of a better term, which scared me since I was and still am someone that is proud of my intelligence.....

I'm glad to hear, but as said, what were your symptoms? You didn't get afterimages, tracers, halos around strong lights, starbursts, ghosting, started seeing a ton of floaters and bfep? Tinnitus?

On 5/5/2022 at 5:59 AM, Tsunami said:

In my experience, the symptoms have gradually faded away as I've abstained from alcohol + drugs and tried to live a healthier lifestyle in general. I no longer get bothered by my symptoms, all I have left is visual snow and it doesn't affect my quality of life whatsoever. It's been about 4 years since the onset of mine from nBOME. 

What were the other symptoms and how can seeing static everywhere not affect tour quality of life? Or maybe you got it mild? 

Do you believe that the pathophysiology of HPPD is neurons or 5HT2-a receptors actually getting destroyed or damaged? 

I don't want to be the bringer of bad news, but no, the symptoms that's caused by our brains reduced ability to filter out unnecessary visual stimuli, like the ones you mentioned, is almost certainly permanent.

I got this screenshot from a guy on Reddit that had talked to you on Twitter, and who is this fool in your organization? He or she doesn't want to spread awareness about HPPD through a big platform and believes that people will get HPPD from doing it. Literally, wtf? 

 

Quote

If you got persistent visual disturbances and pseudohallucinations after a drug use it's HPPD.

On 3/18/2022 at 8:40 PM, apfelsaft45 said:

maybe but you shouldnt underestimate the "acceptance" thing, i swear to god for 4 year i completely forgot that i had hppd, my brain completely ignored all the symptoms, sadly a few weeks ago i read about hppd again and since then i have all my symptoms again. If you stay of the Forums n shit, be busy etc you will completely forget about it. Its so crazy because now i look in the sky and its full of floaters etc. and the last 4 years i could look in the sky, the Ocean etc. and it was completely clear

It's impossible to ignore the vs, floaters, bfep, ghosting, palinopsia, halos and starbursts that i have, they simply disrupt my vision too much. And no, if you got the visual snow and all the other shit it wasn't "clear" for you, you simply got used to it, but if you could get your pre-hppd vision back you would've seen what clear really looks like.

To me it's crazy how you dare use a drug that's an not all to uncommon cause for this

Lamotrigine took away everything for me except the typical visual snow syndrome symptoms and slight derealization, it saved my life.

I'm sorry to hear! Sadly antidepressants can cause this as well, like all "serotonin attacking" drugs that possess hallucinogetic properties, it seems to be much rarer to get it from these than psychedelics and weed though. I don't want to bring you down, but sadly the prognosis isn't good. Since getting this a little over a year ago i've desperately searched for stories were the visual snow have subsided, but out of all the hundreds, probably over a thousand posts i've read, i've only heard about four that say that their vs has actually subsided, but who knows, they might just have been trolling. So no, this will almost certainly not go away no matter what you do.

On 3/11/2022 at 9:00 PM, apfelsaft45 said:

you still have the hppd symptoms ?

Sounds like it. Just another acceptance post.

On 3/8/2022 at 12:56 AM, NRFAdmin said:

You know full well that the NRF was behind the MaQuarie Protocol. The PRF had no part in it. 

Isn't it thanks to the PRF that it's actually happening?