Lamotrogine Question

[Spartan]

For HPPDers or people with HPPD using Lamotrogine.. what is the typical daily dosage ? 

Thankyou. 

[James3524]

1 hour ago, Spartan said:

For HPPDers or people with HPPD using Lamotrogine.. what is the typical daily dosage ? 

Thankyou. 

I'm not on Lamotrigine, but I think around 150-300mg is the typical dosage. 

[Spartan]

1 hour ago, James3524 said:

I'm not on Lamotrigine, but I think around 150-300mg is the typical dosage. 

Ok cool that's helpful.. thankyou 

[James3524]

14 minutes ago, Spartan said:

Ok cool that's helpful.. thankyou 

No problem, good luck with the meds!

[raincat]

11 hours ago, Spartan said:

For HPPDers or people with HPPD using Lamotrogine.. what is the typical daily dosage ? 

Thankyou. 

I am still going up on my dose. I'm at 75mg now. I will be taking at least 100mg and no more than 200mg. It seems to be helping a bit already. I am a small person and sometimes that is relevant to medicine dosing, not sure if it is or isn't with this. I barely weigh enough to not take a child's dose of tylenol. I am not underweight, I used to be but not anymore. Just small.

[yarkadin]

22 minutes ago, raincat said:

I am still going up on my dose. I'm at 75mg now. I will be taking at least 100mg and no more than 200mg. It seems to be helping a bit already. I am a small person and sometimes that is relevant to medicine dosing, not sure if it is or isn't with this. I barely weigh enough to not take a child's dose of tylenol. I am not underweight, I used to be but not anymore. Just small.

How is it helping you?

[Spartan]

On 8/15/2024 at 12:15 AM, raincat said:

I am still going up on my dose. I'm at 75mg now. I will be taking at least 100mg and no more than 200mg. It seems to be helping a bit already. I am a small person and sometimes that is relevant to medicine dosing, not sure if it is or isn't with this. I barely weigh enough to not take a child's dose of tylenol. I am not underweight, I used to be but not anymore. Just small.

That's great . Wishing you all the best ! 

[raincat]

On 8/14/2024 at 10:37 AM, yarkadin said:

How is it helping you?

The small moving color patterns I see if I stare at a wall in a certain environment have become more faint and aren't as much predominantly green and reddish pinkish anymore, the wavey visual noise has decreased, the small crooked stick shaped light flashes have decreased, the large amount of floaters I see in bright light has decreased, the thing thats kind of halfway between a trail and an afterimage made of light that I get mostly towards the end of the day has decreased, and most importantly I am much less anxious and I haven't had a trauma flashback in a while, though everything still gets alot worse and I can't handle it if I try to go out, so I'm still stuck in a specific part of the house and only going out for doctor appointments and such. But maybe that won't be for much longer. I have hope. I recently learned that lamictal is in the prep stages of human trials for autism, which I have, they already did some promising studies on autistic rats, so thats cool too. Apparently genetic mutations that cause calcium channel overactivity are linked to schizophrenia, seizures, and autism. Lamictal decreases calcium channel activity. Maybe you knew that already, but saying just in case cause it's interesting and relevant. You probably knew about the HPPD seizure link at least.

[yarkadin]

I really appreciate your response and sharing all of that detail!  I'm really sorry that this is happening to you and you are stuck in your house.  You said earlier you've had this for just two months.  I was in a similar situation as you are when it started for me... could barely go outside, I was completely traumatized, total PTSD, and honestly thought I was going insane and that my life was essentially over.  Incredible to think about now, but I was STILL going to work and I do white collar work.  Fortunately, I had a pretty laid back situation then and things were going slow, work-wise.  But back then when it happened to me there was very little support network and information as there is now.

I will tell you right now that things will get immeasurably better and you will lead a normal life!  Don't allow this situation to overpower you! 

Much of what you describe I would say falls into the frames of entoptic phenomenon (https://en.wikipedia.org/wiki/Entoptic_phenomenon)... which is to say ordinary defects and features of the eye.  These are not "hallucinations" per se but totally banal and ordinary things that most people are just not consciously aware of to the extent we are with this condition.  I get very frustrated with people thinking we "hallucinate" things... or that HPPD is some kind of magic shamanistic spell or portal to another dimension.  I am so fed up with clowns who conjure up this total bullshit to project something special into their experiences. Maybe that is the case for some people, maybe they hallucinate, but I know for a fact that there is nothing hallucinatory in what I and many others are experiencing with HPPD... everything is predictable, including the after-images with my brain's inability to turn off the signal of an image after I change focus.  I remember when I was very young, pressing on my eyes, and seeing various colors and flashes, or looking at the sun briefly and seeing a flashing image when I shut my eyes closed... even after images of that very bright sun or light.  When I explain to people what HPPD is, I say it's just that, ordinary bullshit, but magnified, exacerbated, to an extreme degree.  The other frustration is when people describe these things as "beautiful" or a "gift".  Go fuck yourself and your "shaman" magic delusional "gift".  It's no gift, and there's nothing beautiful or strange or magical or mystical about it.  In fact, I think it's one of the least interesting and least "beautiful" fucking things one can imagine from the subjective experience.

Do you have extreme brightness and light sensitivity?  I remember going out in shades would help in the first few years.

Wish you all the best, man, and please keep us posted on how things change with Lamictal and in general moving forward.

Edited August 17 by yarkadin

[AF44]

11 hours ago, yarkadin said:

I really appreciate your response and sharing all of that detail!  I'm really sorry that this is happening to you and you are stuck in your house.  You said earlier you've had this for just two months.  I was in a similar situation as you are when it started for me... could barely go outside, I was completely traumatized, total PTSD, and honestly thought I was going insane and that my life was essentially over.  Incredible to think about now, but I was STILL going to work and I do white collar work.  Fortunately, I had a pretty laid back situation then and things were going slow, work-wise.  But back then when it happened to me there was very little support network and information as there is now.

I will tell you right now that things will get immeasurably better and you will lead a normal life!  Don't allow this situation to overpower you! 

Much of what you describe I would say falls into the frames of entoptic phenomenon (https://en.wikipedia.org/wiki/Entoptic_phenomenon)... which is to say ordinary defects and features of the eye.  These are not "hallucinations" per se but totally banal and ordinary things that most people are just not consciously aware of to the extent we are with this condition.  I get very frustrated with people thinking we "hallucinate" things... or that HPPD is some kind of magic shamanistic spell or portal to another dimension.  I am so fed up with clowns who conjure up this total bullshit to project something special into their experiences. Maybe that is the case for some people, maybe they hallucinate, but I know for a fact that there is nothing hallucinatory in what I and many others are experiencing with HPPD... everything is predictable, including the after-images with my brain's inability to turn off the signal of an image after I change focus.  I remember when I was very young, pressing on my eyes, and seeing various colors and flashes, or looking at the sun briefly and seeing a flashing image when I shut my eyes closed... even after images of that very bright sun or light.  When I explain to people what HPPD is, I say it's just that, ordinary bullshit, but magnified, exacerbated, to an extreme degree.  The other frustration is when people describe these things as "beautiful" or a "gift".  Go fuck yourself and your "shaman" magic delusional "gift".  It's no gift, and there's nothing beautiful or strange or magical or mystical about it.  In fact, I think it's one of the least interesting and least "beautiful" fucking things one can imagine from the subjective experience.

Do you have extreme brightness and light sensitivity?  I remember going out in shades would help in the first few years.

Wish you all the best, man, and please keep us posted on how things change with Lamictal and in general moving forward.

The “gift” that keeps on giving

[raincat]

On 8/17/2024 at 11:35 AM, yarkadin said:

I really appreciate your response and sharing all of that detail!  I'm really sorry that this is happening to you and you are stuck in your house.  You said earlier you've had this for just two months.  I was in a similar situation as you are when it started for me... could barely go outside, I was completely traumatized, total PTSD, and honestly thought I was going insane and that my life was essentially over.  Incredible to think about now, but I was STILL going to work and I do white collar work.  Fortunately, I had a pretty laid back situation then and things were going slow, work-wise.  But back then when it happened to me there was very little support network and information as there is now.

I will tell you right now that things will get immeasurably better and you will lead a normal life!  Don't allow this situation to overpower you! 

Much of what you describe I would say falls into the frames of entoptic phenomenon (https://en.wikipedia.org/wiki/Entoptic_phenomenon)... which is to say ordinary defects and features of the eye.  These are not "hallucinations" per se but totally banal and ordinary things that most people are just not consciously aware of to the extent we are with this condition.  I get very frustrated with people thinking we "hallucinate" things... or that HPPD is some kind of magic shamanistic spell or portal to another dimension.  I am so fed up with clowns who conjure up this total bullshit to project something special into their experiences. Maybe that is the case for some people, maybe they hallucinate, but I know for a fact that there is nothing hallucinatory in what I and many others are experiencing with HPPD... everything is predictable, including the after-images with my brain's inability to turn off the signal of an image after I change focus.  I remember when I was very young, pressing on my eyes, and seeing various colors and flashes, or looking at the sun briefly and seeing a flashing image when I shut my eyes closed... even after images of that very bright sun or light.  When I explain to people what HPPD is, I say it's just that, ordinary bullshit, but magnified, exacerbated, to an extreme degree.  The other frustration is when people describe these things as "beautiful" or a "gift".  Go fuck yourself and your "shaman" magic delusional "gift".  It's no gift, and there's nothing beautiful or strange or magical or mystical about it.  In fact, I think it's one of the least interesting and least "beautiful" fucking things one can imagine from the subjective experience.

Do you have extreme brightness and light sensitivity?  I remember going out in shades would help in the first few years.

Wish you all the best, man, and please keep us posted on how things change with Lamictal and in general moving forward.

 I do have extreme brightness and light sensitivity, I'm actually autistic so I already went out with shades because I had sensory issues pre HPPD. It has made those pre existing issues worse for sure, including my sensitivity to sounds and my environment generally. People usually talk about HPPD being primarily visuals and anxiety, but I feel like it's impacted me in every way. My imagination of picture and sound was already quite vivid but now it it even more so, pain seems to have a more spikey quality to it which is quite uncomfortable, etc. I think part of why I'm so crippled by these new issues is because I'm autistic. I would absolutely not be able to go have a job at this point, so I am lucky that I am still young and my dad cares for me. I am very grateful of him. To be honest I think there is a way in which I'm handling this a bit better than many people would because I was already at a low level of functioning due to severe mental issues that already had my whole life taken over. And going out in out in public was already a bit of an ordeal, though at least I was able to force myself through it most of the time with noise cancelling headphones or covering my ears and such. Now I barely make it through my doctor appointments, being in the car is difficult, and the stress of that stays with me to an extent for the rest of the day. Also, I can tell you have a very strong opinion on that HPPD opinion... I agree, though I would call it a hallucination, but an entirely different type than what you would have with psychosis. When I was getting an opinion from a psychiatrist (my primary care physician wanted that opinion before prescribing me lamictal) the psychiatrist told my dad I was in psychosis when I walked away... I came back and had to explain it is not AT ALL psychosis, these hallucinations are not that type of hallucination. The reason I say it's still a hallucination is because hallucinations are seeing something that isn't there, and we are definetly seeing things that aren't there, though it's never a whole object or person like how it would be in psychosis. That psychiatrist had clearly never seen an HPPD patient before, and when I asked about it she dodged the question by saying she was aware of lasting drug induced issues... another psychiatrist I saw reacted in a simialarly, but she at least didn't jump to the conclusion I'm having a psychotic episode. I agree that it is an amped up version of ordinary visual processing, I already had some static on my vision, a floater or 2 in bright light, etc before HPPD. So there is a certain extent of hallucination that is normal, but that kind is not really worth calling attention to it unless it is clinically significant, such as with HPPD. And again the distinction between the very different types of hallucinations is crucial. That's my opinion on it. I also agree that HPPD is not a spiritual experience, but if someone believing that their HPPD is a beautiful gift helps them accept it and cope with it, I don't really have a problem with it even though I disagree. I personally don't believe in anything supernatural, though the trauma of my awful trip has given me a new fear of an eternity of suffering after I die... I have to make distinctions in my mind between rational and irrational fears, as we all do, and I can do that most of the time but sometimes it's difficult and I have a greater proportion of my mind being irrational than rational. Before I ever did any sort of drug I would sometimes have very specific irrational fears of cameras watching me (especially in small holes, such as in the head of a nail), a group of gods using me as a plaything, people around me conspiring against me, and at times it made me quite afraid and uncomfortable. I remember during one of my psych ward visits I was crying in the corner of my room because I was thinking that my life was the cruel entertainment of some ethereal group of higher power. That kinda thing is similar to psychotic beliefs but I definetly was not psychotic and over time I have learned to force at least a part of myself to conform to a strictly reasonable reality at all times (except for when I was having that horrid trip). I probably have BPD, I'll find that out soon since I'm having a full neuropsych eval this week. BPD was originally believed to be a disorder which is half psychosis half neurosis. This has since been corrected and it is no longer considered at all a form of psychosis, but you can kinda see where they were coming from, even though it was definetly wrong. Most if not all psychiatric symptoms manifest on a spectrum where having a bit of it does not warrant a diagnosis, and some people have a higher amount than average of thinge that have potential to be be very problematic, but not to the point or not with all the different features where it meets certain criteria. This is why we have diagnostic criterias, to most accurately sort people into what variant of issues they have, and to prevent people who don't have such a significant psychological issue from getting an unwarranted diagnosis. It's likely you already knew that though, in which case I am preaching to the choir.

I have built The Great Wall of Text. Sorry about that

[brake]

1 hour ago, raincat said:

 I do have extreme brightness and light sensitivity, I'm actually autistic so I already went out with shades because I had sensory issues pre HPPD. It has made those pre existing issues worse for sure, including my sensitivity to sounds and my environment generally. People usually talk about HPPD being primarily visuals and anxiety, but I feel like it's impacted me in every way. My imagination of picture and sound was already quite vivid but now it it even more so, pain seems to have a more spikey quality to it which is quite uncomfortable, etc. I think part of why I'm so crippled by these new issues is because I'm autistic. I would absolutely not be able to go have a job at this point, so I am lucky that I am still young and my dad cares for me. I am very grateful of him. To be honest I think there is a way in which I'm handling this a bit better than many people would because I was already at a low level of functioning due to severe mental issues that already had my whole life taken over. And going out in out in public was already a bit of an ordeal, though at least I was able to force myself through it most of the time with noise cancelling headphones or covering my ears and such. Now I barely make it through my doctor appointments, being in the car is difficult, and the stress of that stays with me to an extent for the rest of the day. Also, I can tell you have a very strong opinion on that HPPD opinion... I agree, though I would call it a hallucination, but an entirely different type than what you would have with psychosis. When I was getting an opinion from a psychiatrist (my primary care physician wanted that opinion before prescribing me lamictal) the psychiatrist told my dad I was in psychosis when I walked away... I came back and had to explain it is not AT ALL psychosis, these hallucinations are not that type of hallucination. The reason I say it's still a hallucination is because hallucinations are seeing something that isn't there, and we are definetly seeing things that aren't there, though it's never a whole object or person like how it would be in psychosis. That psychiatrist had clearly never seen an HPPD patient before, and when I asked about it she dodged the question by saying she was aware of lasting drug induced issues... another psychiatrist I saw reacted in a simialarly, but she at least didn't jump to the conclusion I'm having a psychotic episode. I agree that it is an amped up version of ordinary visual processing, I already had some static on my vision, a floater or 2 in bright light, etc before HPPD. So there is a certain extent of hallucination that is normal, but that kind is not really worth calling attention to it unless it is clinically significant, such as with HPPD. And again the distinction between the very different types of hallucinations is crucial. That's my opinion on it. I also agree that HPPD is not a spiritual experience, but if someone believing that their HPPD is a beautiful gift helps them accept it and cope with it, I don't really have a problem with it even though I disagree. I personally don't believe in anything supernatural, though the trauma of my awful trip has given me a new fear of an eternity of suffering after I die... I have to make distinctions in my mind between rational and irrational fears, as we all do, and I can do that most of the time but sometimes it's difficult and I have a greater proportion of my mind being irrational than rational. Before I ever did any sort of drug I would sometimes have very specific irrational fears of cameras watching me (especially in small holes, such as in the head of a nail), a group of gods using me as a plaything, people around me conspiring against me, and at times it made me quite afraid and uncomfortable. I remember during one of my psych ward visits I was crying in the corner of my room because I was thinking that my life was the cruel entertainment of some ethereal group of higher power. That kinda thing is similar to psychotic beliefs but I definetly was not psychotic and over time I have learned to force at least a part of myself to conform to a strictly reasonable reality at all times (except for when I was having that horrid trip). I probably have BPD, I'll find that out soon since I'm having a full neuropsych eval this week. BPD was originally believed to be a disorder which is half psychosis half neurosis. This has since been corrected and it is no longer considered at all a form of psychosis, but you can kinda see where they were coming from, even though it was definetly wrong. Most if not all psychiatric symptoms manifest on a spectrum where having a bit of it does not warrant a diagnosis, and some people have a higher amount than average of thinge that have potential to be be very problematic, but not to the point or not with all the different features where it meets certain criteria. This is why we have diagnostic criterias, to most accurately sort people into what variant of issues they have, and to prevent people who don't have such a significant psychological issue from getting an unwarranted diagnosis. It's likely you already knew that though, in which case I am preaching to the choir.

I have built The Great Wall of Text. Sorry about that

Haha no worries about "The Great Wall of Text"! Haha

I also have extreme light sensitivity and get easily distracted by like sounds and things. I was never autistic or anything like that before HPPD and visual snow though.

I wish you well!

[yarkadin]

I don't want to dive too deep into semantics but I think this post warrants it.  Hallucinations, per the common definition, are "sensory perceptions occurring without external stimuli".  From Merriam Webster, with my emphasis:

 

Hallucination: a sensory perception (such as a visual image or a sound) that occurs in the absence of an actual external stimulus and usually arises from neurological disturbance (such as that associated with delirium tremens, schizophrenia, Parkinson's disease, or narcolepsy) or in response to drugs (such as LSD or phencyclidine)

Every element of HPPD, outside of the severity which fluctuates, is tied to some "external" stimuli... whether it be the palinopsia which follows in sync the movement of objects close to us or object bright and far away, or the after images which increase or decrease as a function of duration of looking at them and lighting exposure.  Floaters, blue field phenomena, phosphenes are not even second-order but first-order causation phenomena of the eye itself.  It doesn't even transcend the definition into something that "isn't there".  In fact, it makes more sense to me to define entoptic phenomena as more real and less "hallucinatory" than what ordinary people are seeing who do not suffer from our severe levels of disinhibition.

I am open to debate on this because I do understand my experience with HPPD may be different than those of others.

All of that about gods using you as a plaything is a very primeval reaction I think in us humans... obviously there is no constructive purpose in thinking this way.

Edited August 19 by yarkadin