Are there any ADHD meds that are HPPD safe?

[raincat]

My doctor wanted me to try stimulants once my weight was restored but I can't cause of HPPD.

[James3524]

38 minutes ago, raincat said:

My doctor wanted me to try stimulants once my weight was restored but I can't cause of HPPD.

Sadly, the best medications for ADHD are often not the best for HPPD. Medications like Vyvanse, Adderall, and Methylphenidate should be avoided. You might want to try Clonidine or Strattera instead.

[cosmiccharlie]

I have been on Vyvanse for about 2.5 years and first contracted HPPD about 16 years ago.  The first ADHD med I tried was Ritalin and I think this one did exacerbate the symptoms quite a bit.  Vyvanse probably does increase HPPD symptoms in me but it's manageable.  The benefit far out weighs the cost.  I have accepted that I am in the lifelong visual club and don't really feel many negative effects from the condition today.  Everybody is different, this is just my experience.  I have also been on an SSRI for more than 6 years, the past two my dose has been heavy for OCD management (250mg Zoloft).  Again, it's hard to say whether my visuals are worse today because of that but during this time I have completed my PhD in mathematics, fathered two children and currently working as a researcher at a major university.  My marriage and home life are happy.  So in my mind, the combination has worked but who knows; life found a way and for that I am so grateful.  

[brake]

I only tried Adderall to see what kind of effect it has on me. Seems to be fine but I only do it casually and I don't like to mix meds. I can imagine doing it often would increase my visuals a bit. 

[brake]

14 hours ago, cosmiccharlie said:

I have been on Vyvanse for about 2.5 years and first contracted HPPD about 16 years ago.  The first ADHD med I tried was Ritalin and I think this one did exacerbate the symptoms quite a bit.  Vyvanse probably does increase HPPD symptoms in me but it's manageable.  The benefit far out weighs the cost.  I have accepted that I am in the lifelong visual club and don't really feel many negative effects from the condition today.  Everybody is different, this is just my experience.  I have also been on an SSRI for more than 6 years, the past two my dose has been heavy for OCD management (250mg Zoloft).  Again, it's hard to say whether my visuals are worse today because of that but during this time I have completed my PhD in mathematics, fathered two children and currently working as a researcher at a major university.  My marriage and home life are happy.  So in my mind, the combination has worked but who knows; life found a way and for that I am so grateful.  

Wow that's very impressive. I like HPPD stories like this. It's easier to get slowed down, bogged down and overwhelmed in the depression as well.

[yarkadin]

On 9/18/2024 at 9:57 AM, cosmiccharlie said:

I have been on Vyvanse for about 2.5 years and first contracted HPPD about 16 years ago.  The first ADHD med I tried was Ritalin and I think this one did exacerbate the symptoms quite a bit.  Vyvanse probably does increase HPPD symptoms in me but it's manageable.  The benefit far out weighs the cost.  I have accepted that I am in the lifelong visual club and don't really feel many negative effects from the condition today.  Everybody is different, this is just my experience.  I have also been on an SSRI for more than 6 years, the past two my dose has been heavy for OCD management (250mg Zoloft).  Again, it's hard to say whether my visuals are worse today because of that but during this time I have completed my PhD in mathematics, fathered two children and currently working as a researcher at a major university.  My marriage and home life are happy.  So in my mind, the combination has worked but who knows; life found a way and for that I am so grateful.  

Yes, I second that... this is a really nice story.  I'm not going to make any big boasts about my life but I have continued working in IT for years, have been publishing my work in various outlets, have bought a house and had a pretty okay existence, all things considered, outside of HPPD, so far.  Especially considering some of the horrors people around the world regular face, I don't take things for granted.  Having said that and more apropos this topic... I don't think I have ADHD - but I am noticing more obsessive tendencies in the last year since my tinnitus and anxiety has worsened.  Many people with HPPD have comorbidities which in principle should be manageable and even curable, I am no exception to this.

[raincat]

On 9/17/2024 at 7:42 PM, James3524 said:

Sadly, the best medications for ADHD are often not the best for HPPD. Medications like Vyvanse, Adderall, and Methylphenidate should be avoided. You might want to try Clonidine or Strattera instead.

I tried Clonidine, unfourtunately I didn't react to it well. Maybe I'll ask my Dr about Strattera.

[raincat]

On 9/18/2024 at 9:57 AM, cosmiccharlie said:

I have been on Vyvanse for about 2.5 years and first contracted HPPD about 16 years ago.  The first ADHD med I tried was Ritalin and I think this one did exacerbate the symptoms quite a bit.  Vyvanse probably does increase HPPD symptoms in me but it's manageable.  The benefit far out weighs the cost.  I have accepted that I am in the lifelong visual club and don't really feel many negative effects from the condition today.  Everybody is different, this is just my experience.  I have also been on an SSRI for more than 6 years, the past two my dose has been heavy for OCD management (250mg Zoloft).  Again, it's hard to say whether my visuals are worse today because of that but during this time I have completed my PhD in mathematics, fathered two children and currently working as a researcher at a major university.  My marriage and home life are happy.  So in my mind, the combination has worked but who knows; life found a way and for that I am so grateful.  

Interesting. I am very wary of taking things that could worsen my symptoms especially because of a particular experience of mine. Before I had HPPD, there was a bit of time where I was on 7.5mg of abilify. It was fine. Really chilled me out. I didn't mind it, but my mom forced me to stop taking it against the reccomendations of my doctor because she thought I was TOO chilled out I guess. After getting HPPD, I started taking it again at a starting dose of 2mg, but it made my HPPD so much worse that by around the 4th day on it I was having a bad trip. It looked and felt a lot like shrooms, everything was huge and detailed, my perceptions/time slowed, my body felt weird, etc. Since mind altering experiences like that are associated with my PTSD, it was horrific and intolerable. Luckily I had Ativan to give me some relief and I immediately stopped taking Abilify. It's interesting because antipsychotics like Abilify are apparently supposed to kill trips, but for me taking just the starting dosage did the opposite of that. After that I found a post online from a mother of an HPPD having teenager who had a similar experience after being on Abilify for a few days. I really don't want to have something like that happen again. I need something to help me function and do the stuff I'm supposed to do, but if it's gonna give me a bad trip then it can't be helpful at all. Anyway, I'm glad you're doing well. Stories like that of people with HPPD living a good life give me hope for my own future. Even if I have HPPD for the rest of my life, it's not the trippy symptoms at the root of my fear, it's the trauma and anxiety that go with it. I could deal with the weirdness 100% ok if it didn't put my mind in a scary place. I used to love rec drugs and wanted to be high all the time.

[yarkadin]

12 hours ago, raincat said:

Interesting. I am very wary of taking things that could worsen my symptoms especially because of a particular experience of mine. Before I had HPPD, there was a bit of time where I was on 7.5mg of abilify. It was fine. Really chilled me out. I didn't mind it, but my mom forced me to stop taking it against the reccomendations of my doctor because she thought I was TOO chilled out I guess. After getting HPPD, I started taking it again at a starting dose of 2mg, but it made my HPPD so much worse that by around the 4th day on it I was having a bad trip. It looked and felt a lot like shrooms, everything was huge and detailed, my perceptions/time slowed, my body felt weird, etc. Since mind altering experiences like that are associated with my PTSD, it was horrific and intolerable. Luckily I had Ativan to give me some relief and I immediately stopped taking Abilify. It's interesting because antipsychotics like Abilify are apparently supposed to kill trips, but for me taking just the starting dosage did the opposite of that. After that I found a post online from a mother of an HPPD having teenager who had a similar experience after being on Abilify for a few days. I really don't want to have something like that happen again. I need something to help me function and do the stuff I'm supposed to do, but if it's gonna give me a bad trip then it can't be helpful at all. Anyway, I'm glad you're doing well. Stories like that of people with HPPD living a good life give me hope for my own future. Even if I have HPPD for the rest of my life, it's not the trippy symptoms at the root of my fear, it's the trauma and anxiety that go with it. I could deal with the weirdness 100% ok if it didn't put my mind in a scary place. I used to love rec drugs and wanted to be high all the time.

Trauma will 100% go away if you don't run away from these thoughts... which doesn't seem to be what you are doing.  For a while I was avoiding everything that was associated with my trauma... and then, once I became more balanced and self-confident, I intentionally started to confront my past.  I don't think any trauma can be "healed" at 100%.  Life itself is a damn trauma, being born and living in the world, in human society, haha.  That in itself will be dealt with in time by either a big asteroid, climate change, nuclear war initiated by the stupidity of nationalism/tribalism or the sun eating the planet.  But I digress

[cosmiccharlie]

On 9/19/2024 at 9:22 PM, yarkadin said:

Yes, I second that... this is a really nice story.  I'm not going to make any big boasts about my life but I have continued working in IT for years, have been publishing my work in various outlets, have bought a house and had a pretty okay existence, all things considered, outside of HPPD, so far.  Especially considering some of the horrors people around the world regular face, I don't take things for granted.  Having said that and more apropos this topic... I don't think I have ADHD - but I am noticing more obsessive tendencies in the last year since my tinnitus and anxiety has worsened.  Many people with HPPD have comorbidities which in principle should be manageable and even curable, I am no exception to this.

I don't mean to boast I just want to share my story in the hope of helping others see that things can get better. 

[cosmiccharlie]

12 hours ago, raincat said:

Interesting. I am very wary of taking things that could worsen my symptoms especially because of a particular experience of mine. Before I had HPPD, there was a bit of time where I was on 7.5mg of abilify. It was fine. Really chilled me out. I didn't mind it, but my mom forced me to stop taking it against the reccomendations of my doctor because she thought I was TOO chilled out I guess. After getting HPPD, I started taking it again at a starting dose of 2mg, but it made my HPPD so much worse that by around the 4th day on it I was having a bad trip. It looked and felt a lot like shrooms, everything was huge and detailed, my perceptions/time slowed, my body felt weird, etc. Since mind altering experiences like that are associated with my PTSD, it was horrific and intolerable. Luckily I had Ativan to give me some relief and I immediately stopped taking Abilify. It's interesting because antipsychotics like Abilify are apparently supposed to kill trips, but for me taking just the starting dosage did the opposite of that. After that I found a post online from a mother of an HPPD having teenager who had a similar experience after being on Abilify for a few days. I really don't want to have something like that happen again. I need something to help me function and do the stuff I'm supposed to do, but if it's gonna give me a bad trip then it can't be helpful at all. Anyway, I'm glad you're doing well. Stories like that of people with HPPD living a good life give me hope for my own future. Even if I have HPPD for the rest of my life, it's not the trippy symptoms at the root of my fear, it's the trauma and anxiety that go with it. I could deal with the weirdness 100% ok if it didn't put my mind in a scary place. I used to love rec drugs and wanted to be high all the time.

I completely understand, however for me I waited long for the medication to reach some kind of equilibrium with my mind and body.  I tried to not be tied to the transient effects of the first few weeks but that's just me.  It's very nice to have this community while we navigate life with HPPD.  You guys are a rock for me.  

[yarkadin]

On 9/24/2024 at 10:37 AM, cosmiccharlie said:

I don't mean to boast I just want to share my story in the hope of helping others see that things can get better. 

Understood and not what I intended to communicate at all, apologies if I conveyed anything negative. I am often reluctant to make any high-sounding claims about my life and so I add a caveat about big boasts.  Actually this month I lost my job (after almost 8 years) and am in a pretty bad spiral... already was mentally not in a good place.  I'm taking all practical steps to get things secure including reinstating some form of health care plan.  The worst is the potential lack of concentrated focus... I have become a workaholic over the years and now that energy needs to be redirected.  I should be relaxing, maybe spending more time working on my art or writing... but having trouble doing so.

Speaking of ADHD, have any of you guys tried applying toward a fitness program or club?  I don't mean this in any cavalier way, I don't think I have ADHD myself so I may not have an accurate picture of what it is to experience, but I am curious if it can provide any relief as opposed to taking pills and fattening up an already critical mass Big Pharma.

Edited September 25 by yarkadin

[yarkadin]

On 9/24/2024 at 10:41 AM, cosmiccharlie said:

I completely understand, however for me I waited long for the medication to reach some kind of equilibrium with my mind and body.  I tried to not be tied to the transient effects of the first few weeks but that's just me.  It's very nice to have this community while we navigate life with HPPD.  You guys are a rock for me.  

I hear you on community.  There are a lot of good and kind empathetic people here and it's a good feeling to know you are not alone.  A small confession: as soon as I lost my job just recently, I sat down in front of my computer and almost immediately started to read and respond to messages on this board.  Maybe it was a feeling of safety, calm in the storm, who knows.  But there are negatives to lingering on this problem for long too... what most interests me are practical solutions and medications.  The progress with the VSS organization offers some promise if it is not some hype or big pharma PR stunt.  It's easy to be very cynical about this.  I can only hope that they take it seriously... and any data is better than no data... even if ultimately there is no solution found in the end.

Edited September 25 by yarkadin

[brake]

1 hour ago, yarkadin said:

I hear you on community.  There are a lot of good and kind empathetic people here and it's a good feeling to know you are not alone.  A small confession: as soon as I lost my job just recently, I sat down in front of my computer and almost immediately started to read and respond to messages on this board.  Maybe it was a feeling of safety, calm in the storm, who knows.  But there are negatives to lingering on this problem for long too... what most interests me are practical solutions and medications.  The progress with the VSS organization offers some promise if it is not some hype or big pharma PR stunt.  It's easy to be very cynical about this.  I can only hope that they take it seriously... and any data is better than no data... even if ultimately there is no solution found in the end.

How recently did you lose your job? I thought you said you had a good job.

[yarkadin]

3 hours ago, brake said:

How recently did you lose your job? I thought you said you had a good job.

Almost 2 weeks ago on Friday the 13th!  Pretty appropriate that they chose that day, capturing the horror, haha.  I THOUGHT I had a good job.  The explanation from my manager made no sense, but then the official doc mentioned downsizing for budgetary reasons.  I didn't think I would be on the chopping block because I work hard but it truly doesn't matter in the end, esp. when some new management comes in to the picture and you have people making decisions that haven't worked with you a single day.

Edited September 25 by yarkadin

[brake]

17 hours ago, yarkadin said:

Almost 2 weeks ago on Friday the 13th!  Pretty appropriate that they chose that day, capturing the horror, haha.  I THOUGHT I had a good job.  The explanation from my manager made no sense, but then the official doc mentioned downsizing for budgetary reasons.  I didn't think I would be on the chopping block because I work hard but it truly doesn't matter in the end, esp. when some new management comes in to the picture and you have people making decisions that haven't worked with you a single day.

Oh man I'm sorry brother. The economy isn't doing well. I wish you better luck in the future. You're a smart guy.

[yarkadin]

58 minutes ago, brake said:

Oh man I'm sorry brother. The economy isn't doing well. I wish you better luck in the future. You're a smart guy.

Thanks, man!  Wish you luck as well.  It's a strange time indeed... HPPD makes it even stranger