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The thread about dopamine agonists and supportive agents (e.g levodopa and reuptake inhibitors)


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Brain Injury

There are a couple ‘models’ of brain problems the have been helpful is trying to understand HPPD. These can be very important for getting help from doctors. One, DP (Parkinson’s Disease), I mention a lot. The other TBI (traumatic brain injury) is also helpful, though it can be quite broad.

While we don’t have TBI, please note this link http://www.pmr.vcu.e...ps/tbi_meds.pps

As you browse, note slide #6 -- Cognitive Improving Medications. In eight lines of drugs listed, 6 that increase dopamine are recommended:

Amantadine (D1 agonist used for PD and bird flu)

Bromocriptine (D2 agonist used for PD)

Dextramphetamine (Adderall)

Methylphenidate (Ritalin)

Sinemet

Wellbutrin

Moreover, NO meds that lower dopamine are recommended.

So it is well known with brain injury that increasing dopamine is an important and accepted treatment. The question is, is HPPD a type of brain injury? That depends on the individual and on viewpoint. And in context of getting help, this view may help your doctor to help you.

While HPPD is not TBI and it is not Parkinson’s disease, these models can give insight to what may be going on in our particular list of symptoms. This can help your thinking and raise points to discuss with your doctors.

Some are hoping that medical research will eventually provide an answer. However medical research requires a lot of money. Drug companies are not going to develop new meds for us – we are too small a market. Furthermore, there isn’t much money in researching the effectiveness in existing drugs (especially if they are generic).

This leaves much in our own hands. And in the hands of sympathetic doctors who are willing to try things even if it is ‘off-label’. Asking your doctor to consider your symptoms to be a mild brain injury may help. He may actually reply that this is obvious (some have said so to me). Again, this leads back to the point of the previous post about finding helpful professionals.

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what im confused about is if Klonopin decreases dopamine and helps people, how can Sinemet increase dopamine and help as well? i seem really stupid bu jw lol.

From everything I've read about people's reports here, I havent read much of people saying that Sinement helps much directly with hppd symptoms. Seems to be more of an anti-depressant than anything.

And klonopin does seem to help with some hppd symptoms for people. But being a depressant, it also dulls certain aspects of perception. So if a person is on klono and takes this, a lot of it may be simply the countereffect to the klono effects.

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ive been reading that alot of people have had decreased visuals and even DP/DR might get better. i have an appointment with a neurologist and gonna bring in some of these things to show. what im still confused about is the recommended dosage. and if a generic brand of Sinemet has had the same results or no?

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From everything I've read about people's reports here, I havent read much of people saying that Sinement helps much directly with hppd symptoms.

Well as of this writing, six people so far isn’t much to report -- four people love it, two people didn’t respond at all positive or negative. [As a side point, how many meds do we know of that have virtually no side-effects?]

However from "Dr. Abraham trial with DA substances there were 30-50% success rate" – that is pretty damn good http://hppdonline.co...et/page__st__16

As an example, I know longer see in frames – a HPPD symptom. And this is before ever trying Klonopin or Gabapentin.

Seems to be more of an anti-depressant than anything.

Dopamine is at the heart of consciousness, motivation and perception. So, theoretically it should help DP/DR (which a couple reports so far confirm). It should also help HPPD symptoms that fall within the domain of dopaminergic neural circuits (anxiety, contrast, depth perception, acuity, …).

Depression by medical definition involves anhedonia. And anhedonia, according to neuroscience, is low dopamine. Furthermore, as indicated by both autopsies and lab experiments, depression is actually a type of anxiety. Dopamine is a key player in the amygdala – fight or flight (anxiety and numbness).

However, if you don’t have a low dopamine problem, then Sinemet isn’t going to do much. SSRIs are used for depression but their effect is downstream and poorly understood – thus it takes 4-8 weeks to get results. These meds work with depression from other reasons.

And klonopin does seem to help with some hppd symptoms for people. But being a depressant, it also dulls certain aspects of perception.

If you check slide #5 in the previous mentioned link, http://www.pmr.vcu.e...ps/tbi_meds.pps, you will see that benzodiazepines (which include Klonopin) are "Cognitive Impairing Medications".

However, Klonopin may increase a person’s energy and thinking which probably indicates too much ‘clutter’ is going on in the brain. This is the purpose of antiseizure medications. Perhaps this is why it helps some with HPPD – too much activity is cause OEVs and/or CEVs.

So if a person is on klono and takes this, a lot of it may be simply the countereffect to the klono effects.

My results were 9 months before ever trying Klonopin. The improvement in life from Sinemet alone was remarkable and beyond any expectations. I’ve had very little inter-effect from these two meds. But it might be different for others, perhaps both are needed to really notice anything.

Klonopin and Sinemet are not even closely related. It is true that since prolactin is lowered in rats this is a strong indication that Klonopin raises dopamine, nevertheless, the drug isn’t noted for it.

In the end, HPPD is symptomology of the breakdown of very complex systems in the brain. It would make sense that multiple drugs might be needed to treat an individual.

what im still confused about is the recommended dosage.

Reread this post - http://hppdonline.co...ons/page__st__3

Until we get more feed back, this small dose is what has worked with people so far

and if a generic brand of Sinemet has had the same results or no?

So far, generics are working fine.

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Thank you for the great information, Visual. This is hopeful. Now if I can plan to eventually get back to Columbus where I have my long term relationships established with my doctors I know I can try it. My GP there does believe HPPD as a legitimate diagnoses. I saw a neurologist today in my current location (military move) and he was very "old school", very nice, but I didn't bring it up because I have seen enough doctors to sense that it wouldn't be a good idea and would distract from the major reason I was there( seizures after several bouts with meningitis). At least that was what intuition said. I have had HPPD since 1998 and if I can wait that long, I can wait a bit longer.However, I will be much more of an avid reader of this site going forward particularly to take in anyone's experience with the new medicine. I can see it has not worked for every person, and I wonder if the length of time one has had it is a factor... I am thinking like with everything else, there are probably many variables which could influence outcome. But again, thank you for posting this!

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  • 2 years later...

Gill is right youre onto something mate, visual you make a big fuss about sinemet but the experianses of people including me make me seem as if you putting it up for sale I have no doubt it has helped you but its not on the par of klonopin or keppra! Gills coment is the first sensible comment ive heard on here in a while im not trying to make this personal visual but all the active members seam consumed with dopamine and its receptors and drugs will the ACTUALL PEOPLE HELPED BY SINEMET PLEASE STAND UP1.

im sure dopamine plays a role but serotonin and achtlycholine and a lot of other shit play a role if not an immoreimportant one.

 

nothing against you personally visual as you no I hate sinemet and value your posts but to be honest I feel at times your selling sinemet , and it could just be that sinemet helps just you and that's leading others astray as far as spending there time on more beneficial reaserch.

 

please feel free to disagree.

 

and yes I can be a pain in the ass :)

chris

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It would be great if all Sinemet triers would raise their hand, let alone those helped.  Bet you can't find 2 dozen who have even tried it.

 

That is the reason for the 'sell'.  It helps some but virtually nobody is even trying it.

 

Dr A's study involved more than just Sinemet.  With that, people had only 1 out of 3 that it worked.  And to date, it seems more a maintenance med rather than a cure.  But this is significant nonetheless.  And for what it is worth, I need less now so it seems to aid in my healing.

 

 

Now, in a Keppra thread of course, lets see all the hands of Keppra triers.  Probably hundreds.  Is it successful 1 out of 3 times???  Doubt that very much ... it isn't for you since you seek stuff beyond it.  That drug gives me CEVs and memory problems.

 

What shall I do?  Not post my little testimonial and research?  Also, how should I feel about having posted for 3 years about Sinemet (look at the date this thread started) and yet only a handful of people have even tried?  Feels like failure to not even have people try.  Either I stop talking about it or SPEAK LOUDER - what should I do?  Perhaps a compromise would be to include the disclaimer: [ Hey, you only got a 1 out of 5 chance this might help you ]  Elsewhere I've posted that if it helps 1%, that is a lot of people.

 

 

As for dopamine's roll as an antidepressant ... just ask a meth user how they feel without meth?  Gill has never tried Sinemet ... so how does he know?

 

Many HPPDers suffer depression, low motivation, and poor sexual desire/performance.  Dopamine often helps that.  But doctors are sold on serotonin - it is revealing that SSREs are as effective as SSRIs yet not available in the USA.  Wellbutrin is the only dopamine based antidepressant made but it raises NE too much for most people.

 

So what is wrong if a person gets help with DP/DR/depression/pleasure but it doesn't do much for visuals?  There are plenty of reasons for a person with HPPD to consider trying a dopamine increasing med.  Is it wrong to point this out?

 

 

What is the success rate for Klonopin, the main 'hero'?  Doesn't touch my visuals at all.  And some other have reported this too.  Does it even work 50%?  It certainly helps anxiety, which is a main use of the drug anyway.

 

 

As for research, it is something people can do and learn from.  Beats feeling helpless...

 

People should get out and try stuff.  Sorry it didn't help you.  But do you truly regret even trying it?  What do you suggest people try?

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I asked my pdoc for Sinemet, he told me i had a panick disorder - i ofcourse told him i ave hppd, he is willing to learn though, but Sinemet i didnt get because he thinks if i get parkinson sinemet wont work, he might be right.

 

I have a list from my Dutch HPPD docter what meds possible could work

 

Klonopin(taking now)

leviracetam (not helping)

neurotin

 

And a few more, nothing about Sinemet ;/

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It would be great if all Sinemet triers would raise their hand, let alone those helped.  Bet you can't find 2 dozen who have even tried it.

 

That is the reason for the 'sell'.  It helps some but virtually nobody is even trying it.

 

Dr A's study involved more than just Sinemet.  With that, people had only 1 out of 3 that it worked.  And to date, it seems more a maintenance med rather than a cure.  But this is significant nonetheless.  And for what it is worth, I need less now so it seems to aid in my healing.

 

 

Now, in a Keppra thread of course, lets see all the hands of Keppra triers.  Probably hundreds.  Is it successful 1 out of 3 times???  Doubt that very much ... it isn't for you since you seek stuff beyond it.  That drug gives me CEVs and memory problems.

 

What shall I do?  Not post my little testimonial and research?  Also, how should I feel about having posted for 3 years about Sinemet (look at the date this thread started) and yet only a handful of people have even tried?  Feels like failure to not even have people try.  Either I stop talking about it or SPEAK LOUDER - what should I do?  Perhaps a compromise would be to include the disclaimer: [ Hey, you only got a 1 out of 5 chance this might help you ]  Elsewhere I've posted that if it helps 1%, that is a lot of people.

 

 

As for dopamine's roll as an antidepressant ... just ask a meth user how they feel without meth?  Gill has never tried Sinemet ... so how does he know?

 

Many HPPDers suffer depression, low motivation, and poor sexual desire/performance.  Dopamine often helps that.  But doctors are sold on serotonin - it is revealing that SSREs are as effective as SSRIs yet not available in the USA.  Wellbutrin is the only dopamine based antidepressant made but it raises NE too much for most people.

 

So what is wrong if a person gets help with DP/DR/depression/pleasure but it doesn't do much for visuals?  There are plenty of reasons for a person with HPPD to consider trying a dopamine increasing med.  Is it wrong to point this out?

 

 

What is the success rate for Klonopin, the main 'hero'?  Doesn't touch my visuals at all.  And some other have reported this too.  Does it even work 50%?  It certainly helps anxiety, which is a main use of the drug anyway.

 

 

As for research, it is something people can do and learn from.  Beats feeling helpless...

 

People should get out and try stuff.  Sorry it didn't help you.  But do you truly regret even trying it?  What do you suggest people try?

Hear hear!

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I asked my pdoc for Sinemet, he told me i had a panick disorder - i ofcourse told him i ave hppd, he is willing to learn though, but Sinemet i didnt get because he thinks if i get parkinson sinemet wont work, he might be right.

 

I have a list from my Dutch HPPD docter what meds possible could work

 

Klonopin(taking now)

leviracetam (not helping)

neurotin

 

And a few more, nothing about Sinemet ;/

 

Sinemet is specifically for Parkinson's.  And people with PD reach a point where it doesn't help as much ... but ultimately that is true of any med.  So they try to use other meds before using Sinemet to extend the overall treating time a person has.

 

One of the big problems is not having early diagnosis of PD.  By the times symptoms begin to appear, there is an 80% loss of function in that area of the brain.  But for people getting treatment before that much damage has occurred, they can be on low dose med for decades with little or no advancement of the disease.  It turns out that in early stages, levodopa is neuroprotective.

 

So the former is the mindset of doctors.  Just as with pain meds and benzos ... it depends on who you talk to.

 

 

Another factor is that dopamine is a stimulating chemical.  Not as much as what is made out of it: NE and E (noradrenaline and adrenaline).  So, for example, Welbutrin is for depression but not for anxiety.  So if a doc thinks your problem is anxiety, then they don't want to boost DA, NE or E.  But who on the planet doesn't have anxiety at all?

 

 

As for HPPD, Dr A is the only doctor that has worked with dopamine for the disorder.  Is anyone continuing the research?  First, his study needs to circulate and catch interest.  Then we wait and see what happens next.

 

For HPPDers, doing a drug trial gives you information about your particular problem.  Whether you pursue a helpful med or not is your choice.  It is also a matter of finding a physician willing to help.

 

 

Edit: You can always ask your doctor for a 7 day trial ... that wouldn't mess up use for PD in the future when that's your docs concern.  Showing him Dr A's drug trial info might help.  Again, at this point your just trying to find out if it might help.

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Once again Visual, we have similar symptoms. I Also got cevs from Keppra, like a i could see coloured patterns, actually kinda beautiiful. However, my memory is what it is and clonazepam took away my cevs. Kinda settled too it. Since i had a worsning lately,still waiting for a good time to drop my Keppra dose a bit

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Gill is right youre onto something mate, visual you make a big fuss about sinemet but the experianses of people including me make me seem as if you putting it up for sale I have no doubt it has helped you but its not on the par of klonopin or keppra! Gills coment is the first sensible comment ive heard on here in a while im not trying to make this personal visual but all the active members seam consumed with dopamine and its receptors and drugs will the ACTUALL PEOPLE HELPED BY SINEMET PLEASE STAND UP1.

im sure dopamine plays a role but serotonin and achtlycholine and a lot of other shit play a role if not an immoreimportant one.

 

nothing against you personally visual as you no I hate sinemet and value your posts but to be honest I feel at times your selling sinemet , and it could just be that sinemet helps just you and that's leading others astray as far as spending there time on more beneficial reaserch.

 

please feel free to disagree.

 

and yes I can be a pain in the ass :)

chris

 

Sinemet is the only drug from which I've experienced any significant visual improvements.

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  • 3 months later...
  • 1 year later...

I just started Sinmet today and I believe this is going to be a game changer for me. I've suffered from intense anhedonia since acquiring HPPD and lately it's been so bad I can't even feel anything when I laugh. After taking it today I noticed my body felt much more comfortable. I also watched some comedy with my friends and actually enjoyed it. I'll post more about my experience tomorrow I just wanted to throw my hand up as a supporter for this drug. Hope it lasts.

25/100 x2 a day

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I just started Sinmet today and I believe this is going to be a game changer for me. I've suffered from intense anhedonia since acquiring HPPD and lately it's been so bad I can't even feel anything when I laugh. After taking it today I noticed my body felt much more comfortable. I also watched some comedy with my friends and actually enjoyed it. I'll post more about my experience tomorrow I just wanted to throw my hand up as a supporter for this drug. Hope it lasts.

25/100 x2 a day

 

Glad that is seems to be helpful.  Just be patient with the dose (don't be quick to increase it).  I try not to sell Sinemet (lol), but it can be a very useful med for some.  

 

Please keep us updated on how you feel.  Have you posted your HPPD story yet?  It might be helpful to know how long you have suffered, what your symptoms are, and how Sinemet affects each symptom.  Wish you success ...

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No I haven't told my story yet. I think it's a very interesting one as it involves early onset of symptoms before hallucinogen use and use of other non hallucinogenic nootropic substances that had profound effects on my symptoms. Where would I post it? Here?

And any reason I should be careful with titration? I'm taking the full 25/100 x2 daily now with fantastic success. With the exception of today (I think I activated some symptoms through strenuous exercise. Acetylcholine related symptoms) it's been nothing but good.

I'm very happy to be starting my involvement in this community :))) It's been a terrifying two and a half years since I've been experiencing the worst of my HPPD symptoms and without reading about some of this medications success, yours included, I would still be in an enormous amount of psychological pain.

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Sound fantastic!  And after 3 years ... that may encourage long time sufferers who feel down.

 

The key with tapering is to reduce possible adjustment side effects.  Sometimes a person takes too much at once and feels bad, yet if they went slow it would help.  One gentleman on the forum took 3 Sinemet at once for his first dose along with some other stuff.  A single 300mg dose of levodopa is too much even for an advance parkinsons patient who is used to taking it for years.  He had a negative experience.

 

Think of it like exercise.  One best ease in.  One could pull a muscle or tendon and have to wait to heal without ever getting a single benefit.

 

I've seen a number of patterns with meds.  Sometimes the need is like an empty well that takes a long time to fill.  Other times it may be like a rusted spring that suddenly pops out with a little oil.  Then there is supplying fuel for the brain to begin forming plasticity changes, so the med is like fertilizer for poor soil ... the plant doesn't just pop up, but can now start growing healthy.  These are positive variation.  There can be negatives situations as well.  Slow and easy may reduce a rough ride either way.

 

One goal is to find the least-effective-dose.  That is the 'safest' long term.  I find that each symptom has an ideal dose like a bell-curve.  But unfortunately might not match other ideals.  Improved night vision might be 100mg/day;  anhedonia might be 250mg/day; tremor might be 400mg/day.  Yet 400mg might make vision too light sensitive and start to increase anxiety and insomnia.  So you have to pick what is most important to you.

 

So again, like exercise, let your gray matter adjust and adapt.  You may find benefits increase without dose increase.  Or they wax and wane.  As its only been 5 days it is early - but definitely a positive test.  For long term use, low dosing is important.  200mg/day is considered low.  I work with 1/2 pills and take 2-4 times a day.  Its been 6 years and it is as effective now as then with the average dose remaining ~150mg/day.  Over time I've added other meds that better address things that Sinemet alone doesn't.

 

 

BTW, Welcome!  Perhaps you might post you initial experience in Introductions including a simple symptom list.  Maybe how various "non hallucinogenic nootropic substances" affected your symptoms.

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Makes sense! for the first four days on it I felt amazing emotionally- much more engaged with my environment and talking to people/laughing etc. since then it seems to have dropped off a little bit but unfortunately still has a wonderful effect. Before I couldn't feel and had 0 motivation. Cried a lot around evening and felt I truly could not go on anymore. I haven't had a suicidal thought since I took my first dose. It hasn't done anything for my memory and organization however. In terms of visuals I have visual snow and mushroom like growing/shrinking of objects. It's been so long with my vision problems I didn't realize I also had a strange fish eye kind of effect that accompanied derealization. The Sinemet didn't help the prior visuals but when the derealization got better so did this fish bowl effect.

I'll make sure to post my story soon. I'm still having some motivational issues and am cognitively kind of tired but I hope to do it soon.

I was wondering what other medications you are on visual? Are you still taking the amantadine? Ever try memantine? I was on baclofen for about 7 months and reacted very positively at first, I believe because of the nmda antagonism + increased gaba like effects. Other mechanisms of action I think really made me unable to take it at the end though (extreme anhedonia, (decreased acetylcholine in certain areas leading to an almost sociopathic/calculating view of the world. It also caused hyper sexuality for quite some time which is a side effect,albeit it a rare one, of nmda antagonists. Lost someone I loved very much because of those last two symptoms >_<)

And thank you! I hope this is my first step to becoming even a slight more functioning person. Rock bottom hurt, but it's gotten me here at least.

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So today I took a nap and woke up feeling awful. Doomed, tearful, sad. It seems like my acetylcholine just keeps ramping up the more I sleep. During the night I wake up at least 5 times. The Sinemet was working fairly well from the hours of 9-1 but I experienced an emotional crash after. Also getting chills. My symptoms seem to sync up with high acetylcholine. I'm terrified of going back to the way I was feeling. I have keppra prescribed to me but I'm terrified to try it. It's a racetam and I've had this horrible resurgence of HPPD because of Oxiracetam. I responded very well to oxi at first but once I came off it lots of bad juju. It upregulates glutamate receptors quite a bit. They do work in almost opposite ways though. Keppra rage terrified me. Oxiracetam got rid of my anger issues and I don't want them to come back.

http://mindrenewal.us/page13.html

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Gabapentin may help with sleep and anxiety & mood swings that may come with Sinemet.  For some reason gabapentin has very low addiction, unlike benzos.  Perhaps it is because it isn't really GABA?  Levodopa (Sinemet) is a stimulant (dopamine) so sleep and anxiety can be negatively affected.

 

Try spacing your Sinemet doses as 1/2 pill 4x instead of 1 pill 2x.  Perhaps cut to 1/2 pill 3 times, skipping the dose before bed.  Dopamine balance is not so easy for me.  Too little, then insomnia and anxiety.  Too much, then insomnia without anxiety.  The right amount, sleep ok and low anxiety.

 

Backing off a half pill might not address DP/DR/Visuals as well, but consider the whole balance and also give the lower dose a try.

 

Not all racetams are the same.  I find Keppra sedating and sometimes use 250mg before bed to help sleep.  As for Keppra-rage, it is irritability that some experience and sometimes B6 helps reduce this.

 

Oxiracetam upregulates glutamate receptors, as you said.  Generally not good for a population of people who are pre-seizure and tend to respond to meds that quiet the brain (HPPDers).

 

Are you just taking Sinemet 100/25 2 times a day without any other med?

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.

Oxiracetam upregulates glutamate receptors, as you said.  Generally not good for a population of people who are pre-seizure and tend to respond to meds that quiet the brain (HPPDers).

 

Are you just taking Sinemet 100/25 2 times a day without any other med?

I think I will cut the dosage to 3x 1/2 a pill and see how that goes. It seems if I take a whole one in the morning I get in a bad mood later in the evening.

Interestingly enough I responded very very well to Oxiracetam at first at least. My HPPD all but vanished. Visuals got better slowly (in fact taking a benzo would bring them back) my memory was super sharp (ie could remember names dates and facts only being told once), I was talkative and outgoing. My mood was very stable, I felt like me not only before HPPD but before I had a TBI at 16. Coming off it though I experienced symptoms of extremely high and extremely low acetylcholine which is very interesting. Seems like maybe certain receptors in the HPPD brain tend not return to the normal stasis after stimuli.

I'm on Sinemet, lexapro (10mg), Ativan (1mg), trazadone (50mg for sleep), melatonin (10mg), taurine (1000mg), methyl folate (15mg)

I take the lexapro and Ativan in the evenings when I notice I'm getting cold chills, feeling sad/tearful, hoplesness etc (all high acetylcholine issues due to pushing out serotonin I think, competitive neurotransmitter) I notice a big difference within 45 min of doing so. I know a lot of HPPDers don't respond well to ssris but emotionally they help me stay stable. Not sure about what they do to my visuals though, as I haven't gone off it since I've had this return of them.

What are you taking now? I'm still very interested in trying memantine or amantadine. Baclofen reduces acetylcholine in the hippocampus while memantine increases it. I'm interested to see if I respond well or negatively to the memantine.

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Yep, definitely getting worse. Starting to feel just awful again. I was so hopeful because the last seven days had been going so well. Anhedonia starting to return, listlessness and hopelessness, anxiety about living the rest of my life with HPPD and the suicidal thoughts that come with it. I'm too anxious to off myself though xD which is ironic. Also extremely physically uncomfortable. Ug. I wish I could find something to give SOME relief, but there seems to be nothing.

I've had concussions my entire life since the age of three. The worst one was almost ten years ago from a skiing accident. I developed a lot of HPPD symptoms from that one actually, I feel like TBI and HPPD have a lot in common. I also noticed a rocking of walls when I looked where a wall meets a ceiling, even before taking psychedelics.

I have keppra prescribed to me right now but I'm afraid to try it. I read your post when you started it about sociopathic feelings and that was one of my symptoms when I first got HPPD. It was awful to be able to feel lonely but also not care about people. Real catch 22. Taking Oxiracetam helped me get back to some sort of caring. I imagine I would get this symptom again by taking keppra and fear it wouldn't go away like before. But at the same time I'm suffering so fucking much I might just have to take it. Has the irritability and sociopathic tendencies gone away for you with keppra? You also said you take it sometimes, so not every day?

This is such a horrible disorder and I wish the world would come to our aid. No one cares about druggies though, the world sees it as our fault (like I ever in my wildest dreams could have imagined a hell like this one lol, would never have touched drugs) and there's no money in researching HPPD.

I responded very well to having more dopamine initially. Like I almost felt emotionally well again not to mention physically comfortable for the first time in a long while. How was your experience with amantadine? I'm trying to call my doctor today and perhaps try it.

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