Jump to content
Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

Recommended Posts

Hello all 

really need some tips as down to final straw with this shit

symptoms. Intense visual snow  makes everything move and vibrate with any straight lines flicking like guitar strings flor waving ceiling shaking etc  . Tactile hallucinations ,mild tinnitus , extreme anxiety and suicidal thoughts 

meds tried  celexa think it made worse but not 100%
phenergen  made it worse

lions mane made it worse

gabapentin  worked originally but made it worse with addition of lamotragine 

sinemet keppra verapamil   No effect

lamactical  was working at 150 then stopped  currently on 300  made it worse a little  thinking of tapering down 

clonasapam  makes it better temporarily as long as I have it in my system regularly  take .5 every other day 

every day is torture and having looked at people’s symptoms I believe I am at the most extreme side of things 

my remaining meds I have in the cupboard are depakote and Pregbalin but I’m afraid to take these

couple of people told me to stick to clonaspam daily as they have been on it decades 

not sure what to do at this point   Ssris seem like a no go   Any advice would be most appreciated  is there a chance my snow will reduce overcrowding time even taking a low dose of clonasapam daily  ?  I had it very mild until a doctor prescribed me a cocktail of drugs that exploded  I have been trying to counteract the spikes but it’s just snowballed   
thanks again

 

 

 

 

 

 

Share this post


Link to post
Share on other sites

Um, so you haven't tried any of the things that I recommended? I would recommend them lol.

Also as I'm aware of your specific symptoms, can you please let me know what your diet is like?

Based on everything that you showed me in PMs, and the drugs/treatments that you are trying, it appears like you're just looking for a quick fix, and simply the body doesn't work like that, its great to get relief but the body needs to heal, it NEEDS building blocks for that, nutrients, vitamins, phospholipids, etc, and then it takes time. A LOT of patience.

Quick fixes for this condition are chamomile, lemon balm, and benzodiazepines. But to heal is something different.

Everything that you're trying pretty much almost NEVER works. I don't know why people don't understand that pharmaceuticals will never work, because you trying to add something to the body that it never needs, nor can it properly utilize it for healing, they are synthetic compounds and they just simply don't belong. Medicine is so far off from treating people that humans are dying off in the droves from major disease, and its only getting worse due to modern medicines failure, because its just become marketing. So I don't now why anyone takes these prescription pharmaceuticals serious, modern medicine is an absolute joke, and failure.

Cancer was cured 70 years ago.

 

Edited by Fawkinchit

Share this post


Link to post
Share on other sites

Totally get it and I am taking bunch of supplements eating well exercising etc. but the fact is I have extremely high queeg which indicates some form of epilepsy. Epileptics take meds to calm their mind. Also on anxiety front. Clonaspam hardly touches my symptoms.  From what I read from others only a few have it very severe. Majority have mild snow and floaters   That I could deal with without Benzos.  There are then people who are living in a full on trip. I’m pretty mentally tough but I i till you spend a day in someone’s shoes you won’t know   Trust me I would love to be off meds but right now it’s survival mode   Also supplements you menwtio. Might make me worse. L theanine made me worse for eg. Everyone has siffeeent body chemistry so there is not only one solution.  There are people out there who have been saved by lamactical for eg 

Share this post


Link to post
Share on other sites
2 hours ago, Jaz said:

Totally get it and I am taking bunch of supplements eating well exercising etc. but the fact is I have extremely high queeg which indicates some form of epilepsy. Epileptics take meds to calm their mind. Also on anxiety front. Clonaspam hardly touches my symptoms.  From what I read from others only a few have it very severe. Majority have mild snow and floaters   That I could deal with without Benzos.  There are then people who are living in a full on trip. I’m pretty mentally tough but I i till you spend a day in someone’s shoes you won’t know   Trust me I would love to be off meds but right now it’s survival mode   Also supplements you menwtio. Might make me worse. L theanine made me worse for eg. Everyone has siffeeent body chemistry so there is not only one solution.  There are people out there who have been saved by lamactical for eg 

By EG do you mean Eosinophilic gastritis? EG is the proper medical abbreviation for that.
Also I don't understand what you mean by queeg. i'm guessing you mean electroencephalagram?

None of the things I recommended have potential to make your symptoms worse.
You're talking a lot about Epilepsy, do you have seizures?
Epilepsy is curable as well, and the meds they take are actually quite neurotoxic long term, they also don't exactly stop seizures.
L-theanine is not a good choice IMO, I'm not sure why you tried that.

Edited by Fawkinchit

Share this post


Link to post
Share on other sites

Hey Jaz how's it going? How long have you had hppd for? I feel like your best shot is to stay on the Clonazepam and stop taking all the other supplements/medications you're taking. The only thing that we know for certain works is Clonazepam. Mixing other medications and supplements could be hurting your health. Supplements can interact with the Clonazepam and if you really want it to work normally you shouldn't be taking extra stuff with it. I really recommend Theraspecs or some other type of precision tinted lenses. Precision tinted lenses are made for people with Epilepsy and migraines but they also work for HPPD/VSS. Meditation is a really good way to manage HPPD anxiety. Just try to stay in a good mindset and try not to focus too much on your symptoms. HPPD is similar to chronic pain because if you focus on it it gets a lot worse. Transcranial Magnetic Stimulation therapy (TMS or rTMS) has been shown to reduce or cure HPPD in some cases according to psychology today. 

Share this post


Link to post
Share on other sites

Qeeg. Is measured activity in brain   I can send you readings 

 

and tms. I am doing 10 sessions soon with a protocol for visual snow let’s see as well as vision therapy  do you have the article ?!

 

so far the lamactical doesn’t react with clonasapam so will give it more time. The fact that it worked for a while gives me hope it can maybe kick back in  I also use fl 41 glasses 

 

are you on clonasapam 

 

cheers 

Share this post


Link to post
Share on other sites

https://www.psychologytoday.com/us/conditions/hallucinogen-persisting-perception-disorder#:~:text=Perception%20Disorder%20(HPPD)-,Hallucinogen%20Persisting%20Perception%20Disorder%20(HPPD),hallucinations%20first%20experienced%20while%20intoxicated.

^That's the artical that suggests TMS might be able to reduce/ cure hppd. All the way at the bottom of the page. \

To answer your question I do not take Clonazepam. I just know from medical sources it prescribed often for hppd and seems to be the only thing that consistently works to reduce hppd. Also, a lot of long term members advocate clonazepam because it works for them, people who have had hppd for 10-20+ years.

I was trying a bunch of different supplements before to try and reduce my hppd but I think it was just making my symptoms worse and causing weird side effects so I am no longer taking supplements. I think people just get the placebo effect and then make claims saying it helped. I really do not trust supplements any more I think they can cause more harm than good.


It also says here that lamatical and clonazepam effect each other/ have interactions: https://www.drugs.com/drug-interactions/clonazepam-with-lamictal-703-0-1430-848.html  . I would ask your doctor about it, you might be better off taking only the clonazepam. 

Share this post


Link to post
Share on other sites

i think you are right on a lot of points. I will step back from supplements. All the advice has really hit me hard. One guy told me at the start I should just use clonasapam and lamotragine. I wish I had listened to him as he was totally right. I only use a small amount of clonasapam.25 a day and 200 mg lamactical.i haven’t have any major interactions yet. Tbh my snow cNt get any worse !!   Can I ask did your snow get worse and then return to normAl.  How long did it take.  I’m praying I’m in middle of month long spikes and that my current level is not my new baseline !!! Cos if it is I am truly fcked 

Share this post


Link to post
Share on other sites

Also to add I think the interactions are mainly if you use large doses of each. I’m trying to get by on lowetyherapeutic dose possible. Lamotragine also should help anxiety which may reduce my dependence on klonapin. Also the fact that it was working for a bit gives me a little hope it was hitting the right point of brain. Maybe I just need to stay patient and let body adjust. Only been 6 weeks. I need the lamotragine to do the heavy lifting on my snow and maybe that means I can take the klonapin as needed as a treat. That’s the dream anyway 

Share this post


Link to post
Share on other sites

If you think the lamotragine is helping you I would stay on it, I'm not a doctor lol. But yeah the other supplements I would stay away from because of possible interactions. 

When my hppd first started I was getting flashbacks 2-3 times a month and after each flashback my hppd got worse. Since then my hppd has reduced at least 50-70% at times. The first two years of full hppd was nightmarish but eventually things calmed down. It's been a total of one year of pre hppd and 4 years of full hppd. 

But overall the snow was heaviest for the first two years, flashbacks stopped after first 6 months, the third and fourth year my vs started to calm down. Recently it's gotten a lot better I think my tinted lenses help (I also wear fl-41 lenses). As the visual symptoms decreased so did my mental symptoms. Still a daily struggle but maintaining a positive mindset is essential to beating this thing. 

I'm planning on doing TMS therapy soon, maybe it will help clear up the remaining snow. 

Share this post


Link to post
Share on other sites

Yeah I’m in Budapest. It’s cheap to do here  there is a specific protocol. I will try and post later 

Share this post


Link to post
Share on other sites

Btw what’s your thought in spikes. Gabapentin invr Ares my snow by 30% 2 months ago. Do you think it has a chance of coming back down ? 

Share this post


Link to post
Share on other sites
On 7/26/2020 at 4:35 AM, Jaz said:

Yeah I’m in Budapest. It’s cheap to do here  there is a specific protocol. I will try and post later 

Can you please answer what your diet is like.

Share this post


Link to post
Share on other sites

It’s pretty good now. Root vegetables and protein. Lots of water   Have the odd cheat day but no alchohol no cigarettes. It’s just a real fcker that since this started a year ago I have cleaned up my act totally. Was never in to drugs. More of a drinker.  But with all this it was 4 spikes of meds that did me in and have made life a living hell. Sucks that we don’t know what makes this better or worse. Seems different for everyone. Gun a stick on lamotragine and lamactical combo now. Done trying other things. Too risky.

Share this post


Link to post
Share on other sites

Also have intense episodes of tactile bugs on skin. They would want to prescribe antipsychotics for sure but I know that can make hppd worse. I’m at a loss 

Share this post


Link to post
Share on other sites
6 hours ago, Jaz said:

Also have intense episodes of tactile bugs on skin. They would want to prescribe antipsychotics for sure but I know that can make hppd worse. I’m at a loss 

Yah dude this is what makes me think your condition is more than just HPPD, like yes i do think that you have HPPD symptoms, and probably have HPPD, your other symptoms and MRIs are not consistent with HPPD.

Does anyone else on this forum get a bug crawling symptoms on their skin?

Share this post


Link to post
Share on other sites
On 7/29/2020 at 5:07 AM, Jaz said:

It’s like meth bugs. Maybe I have hppd related to meth ?

Have you done meth?

The bug crawling is synonymous with Multiple Sclerosis from what I understand, like I had mentioned in our emails.

I would recommend trying this

https://www.amazon.com/Standard-Process-Neurotrophin-PMG-90/dp/B00GZRI9FA/ref=sr_1_1?dchild=1&keywords=neurotrophin&qid=1596125652&sr=8-1

and then I also found this

"Evidence is accumulating to show that multiple sclerosis is a result of deficiencies in which vitamin E complex (as found in butter) is vitally involved. (12) Further, vitamin E is now found to be a remedy for the disorders of menopause, (13) showing how these deficiency diseases follow their victim through life."

So I would also recommend getting a natural source vitamin E supplement, not a synthetic. Wheat germ oil by NOW is the best option. I would recommend that over any vitamin E supplement, as it is mostly vitamin E and has 22 other vital nutrients. Wheat germ is whats removed from wheat that has all the nutrients ever since mechanical milling was invented, it was one of the dumbest things the food industry has ever done. So get wheat germ by NOW

https://www.amazon.com/Supplements-Wheat-Essential-Fatty-16-Ounce/dp/B000JNAMJ2/ref=sxin_7_sn-rev-1-na_a9352bf3e8b35e99488a9265633d584049aac5c0?cv_ct_cx=wheat+germ&dchild=1&keywords=wheat+germ&pd_rd_i=B000JNAMJ2&pd_rd_r=ebb5a36b-b389-44ba-96d4-d854e857c9d5&pd_rd_w=EjZX7&pd_rd_wg=ta4gH&pf_rd_p=2f905be3-bf11-4075-9edc-74dc6b15713f&pf_rd_r=NCB85FAFK1SR699GBE2R&qid=1596125867&sr=1-1-c6d1e124-78d4-46de-a286-0e075d587cf2

Or you can get it from Standard Process, its more expensive but their products are hella top of the line legit and organic.

https://www.amazon.com/Standard-Process-Inflammatory-Supplement-Antioxidant/dp/B003D7UIXQ/ref=sxts_sxwds-bia-wc-p13n1_0?cv_ct_cx=wheat+germ&dchild=1&keywords=wheat+germ&pd_rd_i=B003D7UIXQ&pd_rd_r=313ce055-958c-4120-8ea4-0ac3b07c69f5&pd_rd_w=0nzQn&pd_rd_wg=VAPAV&pf_rd_p=13bf9bc7-d68d-44c3-9d2e-647020f56802&pf_rd_r=NCB85FAFK1SR699GBE2R&psc=1&qid=1596125867&sr=1-1-791c2399-d602-4248-afbb-8a79de2d236f

Try these and let us know how it goes, also it would be wise to add fruits to your diet, and eat less protein, no meat. Remove ALL unprocessed foods from your diet as well. So no synthetic butter, only 100% whole wheat bread, no high fructose corn syrup, no fast food.

Do it bro! Good luck.

 

Edit: for anyone reading this I'm not diagnosing him with MS, but as per my conversation with him his physicians suspect MS.

Also Jaz I'm not saying you don't have HPPD either, I do believe you have symptoms of HPPD, but your tests that you showed me are indicative of MS as well. Also, I think you could benefit from some essential fatty acids, so get a supplement for those, like a mix of cod liver oil and borage oil etc. 

Edited by Fawkinchit

Share this post


Link to post
Share on other sites
On 7/28/2020 at 8:26 PM, Fawkinchit said:

Yah dude this is what makes me think your condition is more than just HPPD, like yes i do think that you have HPPD symptoms, and probably have HPPD, your other symptoms and MRIs are not consistent with HPPD.

Does anyone else on this forum get a bug crawling symptoms on their skin?

Yes I have these sensations.

Phantom water dripping down my face, bugs crawling, burning, itching (I don't have MS), but they thought I did. MRI ruled it out.

Mental health issues can cause these sensations. So can disc herniation in the neck.  Also may want to have B12 checked as it can cause nerve damage which is what happens to people with MS and Disc Issues.

@Jaz Where is yours located?  Is it occurring on both sides of your body (left/right)?  Upper and lower half (above below waste).

I have episodes where it gets really intense, but it's always there just to a lesser extent in my face.

I've never done Meth.

 

 

Edited by p3rs0n

Share this post


Link to post
Share on other sites

Really interesting what you say about the neck. Do you have a WhatsApp or something. This symptom is driving me nuts would be great to message about it   Im not in here much. Basically hairs all over my body are standing up 247 

Share this post


Link to post
Share on other sites
On 8/2/2020 at 11:08 PM, p3rs0n said:

Yes I have these sensations.

Phantom water dripping down my face, bugs crawling, burning, itching (I don't have MS), but they thought I did. MRI ruled it out.

Mental health issues can cause these sensations. So can disc herniation in the neck.  Also may want to have B12 checked as it can cause nerve damage which is what happens to people with MS and Disc Issues.

@Jaz Where is yours located?  Is it occurring on both sides of your body (left/right)?  Upper and lower half (above below waste).

I have episodes where it gets really intense, but it's always there just to a lesser extent in my face.

I've never done Meth.

 

 

Sure, there are other conditions that have these symptoms. However his MRIs are actually consistent with MS.

I agree what he says about the B12 as well, there are a few B vitamins that when deficient can cause this symptom. Hence one of the reason I ask about your diet Jaz. 

Share this post


Link to post
Share on other sites
3 hours ago, Fawkinchit said:

Sure, there are other conditions that have these symptoms. However his MRIs are actually consistent with MS.

I agree what he says about the B12 as well, there are a few B vitamins that when deficient can cause this symptom. Hence one of the reason I ask about your diet Jaz. 

Yeah that was my bad on the MRI bit.  I didn't catch that.

I PM'd you @Jaz

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.