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Jaz

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Hi all. Hope everyone is well. Had some more bad luck this year   Lions mane further increased my snow   Was doing ok for a while on gabapentin clonaspam combo and boom the snow increased again.  Wish I could turn back time but just FYI  things that have taken me to another level of hell with this condition are   Phenergen. Lions man and lamactical gabapentin clash. I figured that dopamine anymtanginists are the devil and unfortunately my baseline is just too high to live with.  I had considered going back on jays 3 on 4 off routine ( wish I had done that from the start) but too many are quick to Demonize benzos when it’s actually other drugs that Fck them up   Definitely the case with me.  Issue now is the clonaspam is not even making a dent in the snow and visibility is becoming a big issue 

i recentkybtrialed keppra. Did nothing for a month but gave me high anxiety

moved on to lamotragine however got a rash so came off it 

Iv read a lot about sinemet and being the opposite of a dopamine antagonist could be worth the try

so tommorrow I pick up sinemet  varapamil  depakote and Lyrica  will slowly try each one in turn to see if any positive effect on the snow 

I’m past the point of living healthy with this too many mistakes been made and level is just ridiculous  basically taking myself out of ending it daily  but I don’t wanna go down without turning over every rock  

 

let me know what you guys think   Really wish I had found this community earlier  when I first had this was so mild and the local gp gave me a cocktail that changed my life    Sure many have been down the same road   Just worries the snow is neuronal damage that won’t heal and has to be managed by medication 

 

 

 

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Considering the fact that your symptoms are getting worse, obviously discontinue those new drugs if you haven't already. You should also not be combining Gabapentin with a benzo.

My advice would honestly be to ask for an increased dose of your clonazepam. I can tell from the meds you're listing that you read r/HPPD and decided to try those meds. I'm just going to say it: the people who run r/HPPD are fucking retarded and don't know what they're talking about. I know it's more active there, but if you want realistic, accurate advice, stick to this message board.

I'd advise against the new meds you're listing and just go with what we know for a fact works: clonazepam. You just need a higher dose now it sounds like.

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But is it a long term solution. What happens once tolerance builds. To make a dent in the snow I would need 4 mg daily   Also in your opinion can the brain heal on clonaspam ?   Yep I agree with reddit. They started flooding the forum with lions mane advocates.  That really messed me up.  Should have just stuck with the clonaspam from the start. It was relieving 80% of symptoms. Now it’s more like 20% 

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Also gabapentin and clonaspam was working great for a while. It’s when lamactical was added shit hit the fan 

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I've been on Clonazepam for around 13 years now. Yes, tolerance does develop over time, though I've noticed after a while tolerance doesn't seem to build fast after a while, and to begin with I feel like benzo tolerance is pretty gradual, it tends to take months before I need a higher dose.

I feel like Jay1's benzo idea of taking it on certain days and not others is a great idea, but like you mentioned, those of us who have already been on Clonazepam for a while, that might not work the same, we could have withdrawals.

In terms of whether or not the brain can heal on Clonazepam, I have no way of knowing since I'm not a researcher, but I can't imagine it hindering it from going away. Obviously Clonazepam is used to minimize/mask the symptoms rather than cure it though.

When I first started Clonazepam I was on 2mg which was nowhere near enough for me. I eventually went to 3mg, at one point I was on 5mg, and these days I'm back down to 3mg. I guess it depends if you trust your prescriber to continue prescribing it and understanding that you need more for relief.

Obviously benzos are some of the most addictive substances on the planet, as you know, but for me my general idea is to simply never stop taking them. You have to decide whether it's worth it for you or not.

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Thanks man   Really appreciate. Can I ask in all that time in benzos has your snow reduced if you had that as a symptom   Reason I ask is I can deal with all the other shit but violent vibrating thick snow 247 is a tough one. Clonaspam muffles the sound but I feel like I need to turn the siren off which led to some risky choices. As I mentioned had the docs not upped my level from the start I could easily have lived with the condition medication free but the worse it gets the more risks feel like I have to take   Hence the sinemet stuff. I believe de Abraham did a study a while back   I know you don’t have a crystal ball but just wish I knew whether my current level is my new baseline or if it’s just a set of really long spikes that could take a few months to settle back down. That would really help my decision. Right now I’m disabled and housebound FYI.  Just too much visual stimulation. Often just put blackout shades on and listen to an audio book if that gives you an idea   Thanks again man 

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No problem at all. In terms of visual snow, I do have it, but I actually first developed visual snow at 14, long before I ended up with full-blown HPPD (age 20). Maybe it's due to the fact I got it at such a young age, but that's actually the one symptom I have that doesn't tend to bother me, but my visual snow is also fairly mild.

In terms of being housebound and disabled because of visual symptoms, I have definitely been there, and I'm so sorry it's so severe for you right now. I definitely remember how that feels and how scary it is.

To answer your question, as to if benzos have reduced my snow, TBH I'm not sure. Looking at a white wall just now I see some very mild snow, whether or not it's milder than when I'm having full-blown symptoms I don't remember, and it's also worth pointing out that although I was symptom free for a long time I am having HPPD symptoms again lately due to an SSRI, so it could also just be the visual snow returning for me because of that.

Sorry I don't have a more helpful answer on that. I'm sure others could weigh in.

 

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Cool so on the benzos your hppd faded over time. That’s good to know.  Sorry to hear about an ssri. That’s how this nightmare started for me. Docs put me straight on amongst other things and boom hppd went 20x overnight 

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18 hours ago, Swartz said:

No problem at all. In terms of visual snow, I do have it, but I actually first developed visual snow at 14, long before I ended up with full-blown HPPD (age 20). Maybe it's due to the fact I got it at such a young age, but that's actually the one symptom I have that doesn't tend to bother me, but my visual snow is also fairly mild.

In terms of being housebound and disabled because of visual symptoms, I have definitely been there, and I'm so sorry it's so severe for you right now. I definitely remember how that feels and how scary it is.

To answer your question, as to if benzos have reduced my snow, TBH I'm not sure. Looking at a white wall just now I see some very mild snow, whether or not it's milder than when I'm having full-blown symptoms I don't remember, and it's also worth pointing out that although I was symptom free for a long time I am having HPPD symptoms again lately due to an SSRI, so it could also just be the visual snow returning for me because of that.

Sorry I don't have a more helpful answer on that. I'm sure others could weigh in.

 

HPPD and visual snow are linked, you should report your case to the Visual Snow Fundation https://www.visualsnowinitiative.org/    /    info@visualsnowintitiative.org

Who knows, maybe we all had VSS before..." hppd ". It' s not clear at all, but there is a certain correlation as I'm preaching here.

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I know HPPD and visual snow are linked. I'll take a look, I know this is a subject you seem passionate about.

I got my visual snow from DXM, in-case you were curious.

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On 6/17/2020 at 5:00 PM, Swartz said:

I know HPPD and visual snow are linked. I'll take a look, I know this is a subject you seem passionate about.

I got my visual snow from DXM, in-case you were curious.

MMM , it's funny, cause at that time period i was misusing a cold medecine (actifed) to sleep at night. I must check if it had DXM into the formula

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Reposting this gem. Also I heard theraspecs can reduce visual snow in the Treatment forum sub https://www.theraspecs.com/shop/ 

Best recommendations to reduce visual snow would be omega 3's. Magnesium (I prefer glycinate and citrate), Valerian root maybe. Have you looked into rTMS therapy? This video can give you temporary relief at the very least. We're here for you. 

 

Edited by David28

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That awful though that you're going through that. I remember the times after I started having lsd flashbacks where my hppd got worse and I felt like I was taking steps backwards it was one of the hardest points in my life. You can still get better though it just takes years of active treatment. Just try to hold onto hope. the video i reposted is really helping me with my visual snow. I've been watching it for an hour a day on a loop in the morning and i seem to notice a genuine change in my perception throughout the day. Able to look at things more easily and stay focussed and just generally less snow. Maybe it can help you. I also really recommend theraspecs mine came today and I noticed a reduction is my vs could help you out on a daily basis. Helps with light sensitivity and hypersensitivity. Sending good vibes your way praying for ya buddy. 

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It's strange (or I'm strange), I've never had visual snow.  Hallucinations yes, but no visual snow.  I've wondered if my symptoms are atypical.  I guess we're all wired different. 

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HPPD does seem to differ a lot from person to person, I'm sure you're not the only one without visual snow. I also imagine the drug that triggered it probably plays a role.

In a way I don't like the term "Hallucinations" or "Hallucinogen" because it can lead people to misunderstand and think you're delusional or schizophrenic, seeing things that aren't really there, like dead relatives walking around or Mickey Mouse walking around telling you to start fires 😄. I like the term "visual distortion" better, I feel it's more accurate (distortion of existing visual elements), and back when I did use hallucinogens I always referred to them as psychedelics, again, due to stigma.

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