VisualDude

Excersize, buspar and taking the mind off HPPD doesn't seem to work. For some reason I just want to isolate myself and not talk to anyone and just stay home all day. I am losing interest in everything in life and I can't find motivation for anything. This new school is such a dramatic change and I hate it ! I can't wait to go back to my old one. Is this a normal depersonalization thing or something else ? I'm starting to think there is more than just HPPD and dp/dr.

Well, half of this stuff is typical for teenagers, which at 17 you obviously are.  That isn't said to put you down or dismiss your HPPD problems.  Its just the natural course of life.  For example, 'existential' issues are common - the whole gambit of: who-am-I ... am-I-real ... what-is-the-purpose-of-life ... etc.

Getting 'centered' and regaining self-confidence helps everyone.  It gets anxiety under control ... and many with HPPD begin getting better once anxiety is resolved.

You are young with a whole great future ahead of you.  Each of us can focus on negatives or work on pursuing positives.  With practice one gains experience, and with experience one learns to start controlling their future ... to achieve goals and feel successes.  The 'curse' of the young is lack of experience.  The 'curse' of the old is lack of physical strength.

As for HPPD, just stay away from recreational drugs.  Eat and live 'healthy'.  Life offers you plenty of reason to live.  Wish you well ...

Visual, that's what texts look like when I trying to read lol

Yes, movement of stationary things.  It has to do with coordination problems between the brains two visual processing systems: Ambient Visual Processing (movement, 'feel', peripheral) and Focal Visual Processing (detail, thought, central).  Note that "Movement of print on the page" is listed as part of Post Trauma Vision Syndrome, https://nora.cc/images/documents/brain-injury-and-hidden-visual-problems-patient-section.pdf

For homework (aauugghh) Google: 

Ambient Visual Processing

Focal Visual Processing

Post Trauma Vision Syndrome

Is this realy moving?

I never saw a ilusion pic that moves so insane like this

Can it worsen hppd? lol

Too bad we can't find a set of images that would hypnotize one back to 'normal'.

Hi all,

Do your symptoms stay stable, or get worse over time (with no further drug use)?

In short, do you think HPPD can progress and develop new symptoms over a period of years, for no apparent reason?

Here is one postulate: http://hppdonline.com/index.php?/topic/5027-thiamine-cocarboxylase/page-2#entry32082 - "disorder in the nervous system that needs medical attention"

Can't feel pleasure. Dopamine receptors destroyed?

Doubt that neurons are actually destroyed, although ampetamine abuse, cocaine, and meth can down-regulate receptors (neurons can selectively add and remove receptors).  Its more likely a complicated change in neuronal system communication and regulation.  HPPD is tricky.

I find significant help with dopamine agonists, including a particular D₂ agonist.  [ Note about Abilify, this one is bad news for me but some like it.  It is a partial agonist for D₂ - this means that it partially stimulates D₂ but prevents full stimulation.  That is may be good for some but negative for others.  See: https://en.wikipedia.org/wiki/Partial_agonist  ]

Recently started thiamine cocarboxylase, a harmless vitamin with surprising results.  While too early for everyone to celebrate (only 6 have tried so far but 5 report benefit), its worth a try ... cheap and doesn't need a script.  More info here http://hppdonline.com/index.php?/topic/5027-thiamine-cocarboxylase/

Its helpful to not think/feel in terms of 'Destroyed' because it just increases fear, anxiety and depression.  These detract from finding solutions and even more important, learning to appreciate what you DO have and CAN do.  

Also, know that neurons readily grow and remove receptors - that is the basis of plasticity (learning).  Well, enough positive before one starts talking about group hugs, that can be hard for some of us guys

Here is a STILL picture (jpeg) that MOVES for everyone, not just HPPDers.  But the reason behind it is the same

I find Keppra too sedating as well.  But 250-400mg before bed can help sleeping.  Anything above 750mg trashes memory.  Then there is a negative 'rebound' when discontinuing, particularly muscle spasms.

the first pill and after 20-30min. if feel massive improvement in visual and body felling. after 4 hours i took the next 50/12,5 dose and minutes after that i felt a really peaceful mind in my head. no more stupid worries about small things. should this be the med i/we all searching such a long time before? even when it helps 30-50%, it would be a massive step forward without abusing benzos and other addict drugs. so good so far. 

slept this night incredible. had a lot of realistic dreams (very nice). when i woke up this morning, i felt much more clear and without tension in my body. my back didn't ache anymore. what is really amazing: yesterday before i slept, i looked on tv and there were very small letters of news flash on the bottom of the screen. i always had problem focusing on them and i always can't read them right. yesterday i see every letter totally crisp and clear, WOW!  ... i still can't belive it. wow wow wow wow wow........and this on the second day. ah, forgot something importent: libido was much better this morning.

still feeling good with K-pin and sinemet (levocarb in germany) mix. still 100 free of anxiety!!!! living with a free mind is sooooo nice. last days had good sex a few times, were great too. 

Hope you are still feeling improved.  Your 4-hour, 16 hour, and 4-week reports are great, how about 4 years now ... still helping?

Something else you might wish to try is discussed here: http://hppdonline.com/index.php?/topic/5027-thiamine-cocarboxylase/

Improved T is an 'irritant' kind of like dopamine.  Both these are motivators - and at the heart of motivation is desire to do something or change something, which contrasts with laying around, 'chilling' and/or apathy.

If the SSRI lowered you T, then you are likely a candidate for responding to a dopamine increasing med. At also depends on your age.  If you are young (or at least not old), 300 is low. Low dopamine will contribute to low T.  What is your 'free T' percentage?  And cholesterols?

What meds have you tried and how did they affect you?

Also, if you can get thiamine cocarboxylase where you live, its worth a try.  It may be that dopamine responders are particularly helped ... hard to know at this time.  But at least its easy to try.

Here is someone to was HPPD free briefly - orgasm or cigarette?  http://hppdonline.com/index.php?/topic/807-15-minutes-of-freedom/

A pattern emerges ... sex, orgasm, visual disturbances, then smoking afterwards.  The visuals are worse if its less than 5 minutes due to being punched in the eye.

"Tell me, why do so many men smoke afterwards?  No wonder tobacco companies get rich." - Maria Gambrelli

This is the one thought you were taking http://www.sourcenaturals.com/products/GP1314

Can you post a like to your actual product?

Possible, though Sinemet was also a fail and even illicit dopamine drugs like cocaine have very little to no effect, I think it is more likely that my receptors are screwed (I think the same with serotonin too).

 

My energy levels are pretty normal, never been a big issue for me.

 

Anyway, good to see it helping others.

Interesting.  I have a fleshly brother who told me that cocaine has zero effect on him - like drinking water.  He is happy, retired (73) and loves weed, or more specifically some sort of 'resin' which he says chills him and helps to be sharper.  Sexually active (or at least self-active) without ED or the like.  His hobbies include mining (yup) and writing books.  Definitely does not need dopamine supplementation.

In hindsight, got the thiamine weakness from mom and dopamine weakness from dad.  Also have (had) a brother who probably suffered both like self.  Wish I could get DNA samples but 2 have been cremated and spread, and moms been in the ground for 40 years.

Time will find a solution for you.  You seem to completely resolve with Klonopin or barbituates whereas these have no visual effects on me.  Also, you have CEVs and I don't though can generate mild ones by taking plenty anticholinergics.

If we can ever get comprehensive symptoms lists along with med responses from members, it would go a long way to isolate the various forms of HPPD.

Thank you for the compliment.  Am working hard on the problem.

Unfortunately, it does nothing for me (3 x 17mg per day for a few weeks now).

 

Seems like Klonopin is the only thing that has any real effect on me. I fear my dopamine receptors might be too far gone.

Or they are wonderfully healthy along with good thiamine metabolism.  But thank you for trying this test.  How is your overall energy?

So far it is 4 out of 5 who express benefit from TC.  That is far higher than expected - was targeting the 10-20% range.  But it is still quite early.  At least it is an affordable test with a harmless (actually nutritionally helpful) substance.

Will put up a poll soon so we can collect feedback - a tally of 'helpful' with whatever comments members choose to make.  

This can be significant info for researchers and grants to study HPPD.  Unfortunately, studying HPPD has been too 'open', making it difficulty to even know where to start.  Seeing that mitochondrial disorders may be involved can direct researchers in mitochondiral DNA.  And seeing the thiamine disorders may be involved directs researchers to solute transporters (such as SLC19A1, SLC19A2 and SLC19A3) ... See https://en.wikipedia.org/wiki/Thiamine_transporter

Unlike the product I've been using, the Source Natural product you are taking does not contain any B vitamins other than thiamine.

So this is a good confirmation that that product can be used instead of the Bio-3B-G ... and that thiamine cocarboxylase is indeed the 'med' involved.  [ I still favor Bio-3B-G because of lower dose and mix with the other Bs to maintain 'balance' (and the inclusion of Biotin which is implicated in some thiamine disorders).  But it is very good news so that people outside the USA can still find TC if they can't get Bio-3B-G ]

Is this working for brainfog and for memory issues?

Merkan's comment may answer this.  I too feel benefit though have been cautious to say so since I've discontinued a med that specifically helps that ... and am missing not taking it, though with only half the problems from its absence when not taking thiamine cocarboxylase. (sorry for the run-on sentence)

I didnt really believe in this but what a dp/dr killer. Not as profound as the first Sinemet pill i took but there is definititely a lot of warmth to it. It does something to my vision, not sure what but more focused. More clear in My thoughts aswell

Amazing that such a simple nutrient can be like a med when it has been missing or otherwise genetically compromised!

In addition to helping DR/DP, your vision should be sharper with better depth perception and 'connection' with the world around you.  Also, lighting not so dim (without Sinemet) or not so bright (with Sinemet).  Just as connection to the world improved, some connection to your inside world may increase.

You will probably find that you need to adjust your meds.  Perhaps decreasing Sinemet and Keppra.  But proceed carefully as you are particularly sensitive to meds among HPPDers

There are 3 areas known to be affected by thiamine deficiency that directly relate to HPPD:

1 ... Dopamine processing (as discussed earlier in the thread)

2 ... Acetylcholine metabolism (alluded to as early as 1929 but here is a more recent text: http://onlinelibrary.wiley.com/doi/10.1111/j.1471-4159.2010.06919.x/epdf  See Fig 6)

3 ... GABA synthesis (See: http://journals.cambridge.org/download.php?file=%2FCJN%2FCJN20_S3%2FS0317167100048630a.pdf&code=33de6c0ce6281afcbcc11dafcdd37ae9 )

On #2, while one cannot be dogmatic, there seems to be connection with both DR and VS to acetylcholine.  Keppra has been popular on the forum and works with acetylcholine (being a Racetam - https://en.wikipedia.org/wiki/Racetam )

On #3, while not a cure, many have used benzodiazepines to manage their HPPD (particularly Klonopin).  Benzodiazepines target a particular class of GABA receptors.  Whether GABA function is specifically altered by HPPD or GABA meds simply help compensate for dysregulations from HPPD simply isn't known at this time.  But with thiamine deficiency, GABA levels are lower.

As a 4th point - and an absolute major one - thiamine is critical for glucose processing.  Not the eating of sugar, but the energy production the fuels life in all cells.  When you read about ATP, whether weight lifting or otherwise, this is where thiamine comes in.

HPPD may, at least partly, be from mitochondrial problems - essentially a mitochondrial disorder at the core.  MDs are discussed with Fibromyalgia, Chronic Fatigue Syndrome and other 'energy' disorders.  Mitochondria are the 'energy powerhouse' in cells.  And thiamine metabolism problems are a class of MDs.  Many HPPDers report problems with fatigue even after 'conquering' anxiety, depression and other things that are known to cause fatigue.  

Another factor is that mitochondrial membranes are particularly sensitive to chemical damage, and when the membrane becomes 'leaky', efficiency drops (energy production drops).

Lastly (will it ever end), mitochondrial energy problems could explain the diverse symptoms reported by HPPDers.  HPPD is a list of symptoms with most reporting a subset from this list and others reporting additional, non-HPPD symptoms - often involving pain, peripheral nerves and/or autonomic nervous system regulation.

So we go circle and circle over possible clues implicating thiamine metabolism being related to HPPD susceptibility and/or symptomology.

Welcome to the forum ... and such an interesting topic, lol.  Afterall, who doesn't like sex? ... yet it is a topic few speak truly honest about

Several members have expressed changes with their HPPD based on pre verses post orgasm.

It is hard to know the reason since the hormone/neurotransmitter interactions are very complex.  However, it is know that upon orgasm, dopamine signals to the pituitary are reduce in order to increase prolactin secretion.  Prolactin along with Oxytocin are 'emotional bonding' hormones.

The relevance to HPPD is that often dopamine levels are involved.  Dopamine, Oxytocin and Opiod receptors are also intimately close (pun intended)

How long have you had HPPD and what are your main symptoms?

i will try it soon to see if it helps anxiety or cognitive functionality in general..even though i dont have hppd anymore, it might be helpful for my anxiety issues

Great!  Sincerely hope you (and others) benefit.

Had been using a specific combination of 3 dopamine agonists to maintain cognitive and emotional (depression/anxiety/agitation) issues.  The 2nd day on TC, dropped one med.  While there are some specific cognitive issues without that med, am more emotionally stable and actually feel a 'happiness/peace' that haven't felt in 10 years with the TC.  Will eventually reintroduce the 3rd med at a lower dose but am giving the thiamine deficiency time to get better - its been 6 weeks now and each week is a little better.  At some point it should plateau, but for now its gradual and subtle improvement.  Currently taking 6 mg / day (4 pills of that product).

I have everything I guess...

VS over everything

Severe light sensitivity

Trails

Floaters

BFEP, over everything, not just the sky

Awful double vision

Every second of my life is unbearable, I simply cannot cope. And I've never even taken psychedelic drugs!

No idea what could have made this worse, no idea at all. Do visusl symptoms progress just for no reason?

Many thanks, pretty desperate right now.

What you post and ask is common.  In the end there is a reason, it just isn't known yet.

But here is an idea ... post #25 in the TC thread http://hppdonline.com/index.php?/topic/5027-thiamine-cocarboxylase/page-2#entry32082

Rational for Trying Thiamine Cocarboxylase

1 ... One common but peculiar thing about HPPD is its progression for weeks or even months after drug use.  

2 ... Perhaps even worse is its return/flareup years later after a person had already got it managed or even been symptom free.

3 ... Lastly there are those who develop it without hallucinogens or other recreational drug use at all.

On point #3, Dr Abraham comments: "Developing HPPD without ever tripping on acid can also happen, but in my experience this is quite rare, and suggestive of another disorder in the nervous system that needs medical attention." http://amrglobal.powweb.com/hallucinogen-persisting-perception-disorder

While there are numerous ideas about the roots of HPPD ranging from plasticity (learned brain 'behavior') to frank neurological damage, and an individual's particular circumstances/conditions are unique, there has to be an underlying genetic 'weakness' and one's general health as factors in this disorder.

Again refering the Dr Abraham's (and others) work in this article: http://dana.org/News/Details.aspx?id=43275  Quote: 

A pre-existing condition?

[ As a side note about genetics, while they defined how you developed (male/female, height, skin color, etc...), they don't make you 'doomed' but rather 'disposed' to be a certain way.  So don't be afraid of your genes or worried about reading about genetics ] 

Going back to part of the previous quote: "suggestive of another disorder in the nervous system that needs medical attention", malnutrition can be a cause.  It may seem far fetched but in context, if a person is missing a needed 'ingredient' or cannot absorb enough of it, then the parts of the body (brain) that need it are vulnerable to dysfunction.  Its really no different than asking, can you run a 4 minute mile if you have not eaten for a week?  Thiamine PyroPhosphate (what Cocarboxylase becomes) is vital for glucose metabolism such that any weakness will result in not enough energy for a cell (neuron) to function correctly - see https://en.wikibooks.org/wiki/Structural_Biochemistry/Krebs_Cycle_(Citric_Acid_cycle)

Given the citations from medical researchers earlier in this thread indicate thiamine 'malnutrition' is common (>10%) even among the well-fed, and that this causes neurological problems, it is reasonable to give Thiamine Cocarboxylase a try.  Maybe a long-shot, maybe not.  But cheap, safe, and doesn't require a doctor's script.

As of this date, March 1, 2016, three individuals report that this specific product has helped them significantly http://www.bioticsresearch.com/sites/default/files/productlabels/1137-web.pdf  Not bad for an idea thats only 6 weeks old ... but do not yet know how many others have actually tried it for HPPD.

thiamine cocarbolxylase works great for VS. Mine is reduced for 80% if not more.

This is great that it is helping.  Thank you for trying ... although the REAL thanks is that it is working.  I see that you got the specific product that I use - that helps to verify the test a little better.

Please post more info in the TC thread  http://hppdonline.com/index.php?/topic/5027-thiamine-cocarboxylase/   (I don't have VS so its exciting to see that it helps people with that symptom too!)

It is hard to know, just have to try things.  If you decide to reduce Keppra (or anything), just go slow ... like reduce your morning pill to 1/2.

Besides VS, what other symptoms do you have?

Can you think of ANYTHING that happened 2 months ago that might have triggered this flareup?

Check out your thread on Visual Snow http://hppdonline.com/index.php?/topic/5094-visual-snow/  Also the TC thread http://hppdonline.com/index.php?/topic/5027-thiamine-cocarboxylase/   It might be worth your trying the product listed.

Took 75mg Wellbutrin CR and started feeling effects in 3 hours - but have a significant dopamine shortage problem compared to other HPPDers.  When trying 150mg/day, it was too strong - not for visuals (which improved a lot) but anxiety/agitation.

Imipramine in an anticholinergic as well as antidepressant.  

Asked doc for Benzatropine since that fixes DR for a guy (dpselfhelp.com) who is taking OCD meds.  Doc thought it might be too strong and prescribed Imipramine first.  It helped depression for about 1 day, lol.  TCAs work fast, unlike SSRIs, but usually have more side effects because they are 'dirty' (affect many neurotransmitters).

In the end got Benzatropine which was helpful but only for a few days - kind of the same way antihistamines are effective for a few days then you have to cycle off.

The anticholinergic effect might be helpful for visual snow as well as non-visual things like muscle spasms.  Keppra is mentioned a lot on this sight, and while not an anticholinergic, it does affect acetylcholine.

The Imipramine made vision less sharp (which all serotonin increasing med do for me).  But it is not likely to be harmful.  Take a lot of an anticholinergic and it starts to mess with memory and concentration, but it can also be sedative/calming.  They are used for low dopamine (PD) to balance the two.  If you have low dopamine and then take something to increase acetylcholine, not only will you have muscle spasms, but you will be delirious with anxiety.

I find all of these help DR a little but not worth the side effects.  But use a little Keppra at bedtime to help sleep.

Prior to the TRT, I only did a free test and total test to check my levels, doctor didn't ask for FSH LH SHBG and prolactin.... So can't answer you, but during the TRT my prolactin was in a normal range now high nor low.

Now I'm using Clomid as a post TRT in order for testicals to start producing natural levels of test and make my sperm active again as TRT makes you sterile and kills your sperm.

Why do you ask about t levels and prolactin ?

Prolactin affects T production inversely (somehow through GnRH) although most action involves FSH/LH.  That is why TRT and Anabolic steroids (weight-lifters) 'shrink' testicles - the hypothalamus sees 'extra' T and tells the body to slow down.

Prolactin is controlled inversely by dopamine via D₂ receptors.

So ... if a man's dopamine is low, prolactin will elevate which tells testicles to produce less T.  Hence, if a person has high Prolactin and low T, low dopamine function might be implicated.

Have posted a lot about dopamine because of own health.  And for many HPPDers, dopaminergic function is involved (as seen in Dr Abraham's drug trial).  However, only a few HPPDers respond really well to just levodopa (Sinemet) supplementation.

In the end, am trying to learn why a person responds to a med or not.  To better understand the underpinnings of HPPD and like disorders.  And to see if we can identify a pattern in advance as to who might be more likely to respond to dopamine stimulation.

Im quitting with Clomid to restart my sperm production, and then cut off everything and let my system work itself normally.. 

 

Quiting because since i started TRT my anxiety is back, i have insomnia, and so many other things going on, I dont know if its the TRT or something else.

Was wondering why you were trying Comid?  Thought it increases sperm production? http://txfertility.com/fertility-treatments/clomid-for-men/

Do you have low T and high prolactin (prior to Comid/TRT)?

the link you gave doesnt sell to the general public

Biotics Research is actually only supposed to be sold by 'professionals'.  But some internet retailers are out there.  It is kind of a pain but it ends up making a better quality product available ... so much stuff is dumped cheap online and at big-box-stores ... but there isn't much truth in labeling.  Then people look at a bottle and say, 'why should I pay $20 when I can pay 10'? ... but many times it isn't the same.  Seen people buy CoQ10 cheap that didn't work ... the real stuff costs a lot.  Recreational drugs aren't the only things cut with junk.

Coffee and the newspaper is my morning routine. I cant say I really feel my hppd flares up. Coffee in the afternoon is a different story, I Will get dped.

Hopefully the thiamine works for us too. I should recieve it tonmorow. They say I should only take 1 a day. You take 6 a day is this the amount when it works? Also I can take this without problems with other meds yes?

Interesting how coffee affects you differently later in the day.  Is it lighting?  (brighter in the afternoon?)

If you look at the label closely, you'll see that 'a serving' is 3 pill, lol.  A lot of their products are like that for pediatric/elderly use.  But it also means that 180 pills is 2 months, not 6 months supply. http://www.bioticsresearch.com/sites/default/files/productlabels/1137-web.pdf

Can't imagine any interaction such low doses would have with meds.  If your talking about the Source Natural product, 25mg would be more than enough.  What meds are you currently on?

I'm officially at the 2nd most depressed point in my life and I'm feeling more depersonalized than ever. So I took some of the advice and this is what is happening :

-staying sober isn't doing shit. No improvements in my visuals either.

- excersize seems to fuck me up now. I used to get a very good feeling from long distance bike riding. It used to feel like a weak but nice acid trip when I would ride then sit down on a bench. Now it feels like I am having a bad trip when I do it ! i get more nervous because my friend who I ride around with is with me the entire time and I'm afraid he thinks I'm on drugs or something

- just laid off the soda and going without caffeine is killing me !

- I was told to socialize more but I really can't find motivation to talk to all of my friends and some of them are kinda worried that I returned to doing drugs. I really only talk to one friend now plus I haven't been to school in almost 3 weeks

- not being in school for a long time drives me mad. Being told to quit school and focus on recovery is total bullshit cuz now that I'm not in school, I'm going mad ! Being at school was more comfortable. I got kicked out of my school because of prescription pill possession. I did return to the school during lunch hours to hang out with friends and people were shocked to see me. Apparently since I had been gone, people heard about what happened and some thought I had overdosed and died.

- eating healthy is hard. Most of the time I don't feel like eating at all and I'm getting skinnier and skinnier. This has been an ongoing issue since July.

- still working on getting medications prescribed. Should get Buspirone soon but as soon as I asked my parents for Effexor too, they freaked out and started crying "OMG that is the mindset of a drug addict" and now my parents are withholding the next appointment. I believe they are just trying to torture me because me and the doctor PROVED that Buspirone and Effexor can not be abused !

Sorry for the long paragraph but any other advice would be great

People don't understand.  There are many reasons people try drugs.  Peer pressure.  Curiosity.  It was fun at one time.  Take mind away from concerns.  One of the big reasons often ignored is that people are trying to self-medicate, whether for a psychological need or biological need.  Some doctors have said this about alcohol.

Are you currently on any med right now?