Maybe this has been mentioned many times, I can't find a good thread on it. In this thread I am gonna spell out what I have found in quick headings. More information available on request, although this + Keppra (Levetiracetam) study should be all you really need.
Why did I research this?
Keppra is not something I have YET tired just to make that clear. Also like any meds this is just another angle, we all know there is no one size fits all and I am not arguing this, just another med that shows promise.
When I was having signs of HPPD (which has faded) 3 months ago (ps NEVER take too much Night Nurse or Nytol/DXM for the love of God) I started researching this subject extensively, even more than I had DP in two years as HPPD is intense let me tell you.
I ended up writing 4 pages + 50 or something credentials to show to my doctor, not set out to prove anything but the existence of HPPD and possible ways to treat it. Doctors do not know/believe in HPPD.
I used HPPDonline as my starting point and my research grew.
What is Keppra?
Keppra (Levetriacteam) is also a anticonvulsants, like Lamotrigine (Lamictal) which is used a lot on this forum also known to help DR / HPPD but Keppra (Levetiracetam) seems gold standard in HPPD. it's an Anticonvulsant, i could go into details but you can look this up yourself.
If someone could outline the differences between Keppra and Lamotrigine in the comments this would be great.
So what's HPPD got to do with DP?
From my research, people on the HPPD website seem to have DP as well although they tend to be more focused on the HPPD side of things than the DP itself.
EEG
Many of the HPPD patients on the forum have had EEG's and they seem to show the same abnormalities. This backs up the Keppra report on HPPD. (available on request).
"EEG assessments demonstrated temporal slow patterns in all patients" it goes on to say after 90 days into treatment, EEG normalized in "23/27 patients" with Keppra".
Okay so all this is great but where is the results relating to DP?
I'll put variety of stories in here to give you a range (so it isn't all fairy tails) these are all taken from HPPDonline:
Bare in mind all stories have extreme visuals changes including such things are morphing walls, visual snow and other changes causing anxiety all day as well as DP, DR. I have typed these stories out from screen shots and quoted the important bits to not make this thread huge.
Story 1: "....If you're feeling up to it take 1000mg in the am and 500mg in the PM the following week. That's the dosage the study suggested and that's exactly what I did. I would have to say it took about 3 and a half months for all my symptoms to subside"
Story 2: "I've been on Keppra since November. Afterimages, trails, dp/dr, social anxiety all greatly decreased. The first month on it i was horribly enraged and depressed but i soldiered on and now i feel great. I have been feeling the closest to normal i have in a long time...id say it took about 2 and a half months on Keppra to notice a difference...dont be impatient guys, definitely worth a try."
Story 3: "And YEAH, it improved my symptoms so much! My DP was lessen by maybe 80-90% and my visuals about 70% and this was only on 250mg 2x a day for 3-4 days! When the side effects were not prominent (that would be between the doses) i more or less forgot what HPPD felt like. So this morning i stopped taking it and i felt ok until tonight when HPPD went full blown and that was when i knew how much it helped me."
Story 4: "Well, i guess this is the "problem child" of mine. I had some occasional great effects with this meds. I have been completely DP free on it and great relief on some aspects of the visual. But i also had some problems with what i have identified as some kinda CNS arousal due to the med. Recently i had a couple of great days when i tried keppra together with clonazepam, it seems to suppress this arousal and the combo makes me feel almost completely normal. Strange feeling to all of a sudden feel your mind intact right behind your eyes instead of being completely scattered."
Story 5: "I will now stay on this daily dose of 1000mg for two weeks since it get rid of all my VS, swirling, DP/DR for now".
Story 6: "I posted a little on here a few months back. Some of you may remember me. Anyhow, I'm more or less all better. I don't take zoloft or klonopin any longer, just 1500 mg Keppra daily which is wonderful. Psychologically, I'm virtually perfect, with only little bits of lingering anxiety here and there but this is more than likely due to the fact that is just finished coming off of zoloft. No more dp/dr at all.
My visuals are very minimal at this point. I still get mild floaters, some light sensitivity and super mild visual snow none of which are immediately noticeable most of the time. I'm only 7 months in and I don't even feel like I have a disorder anymore. As if it hasn't been said enough, every single person with HPPD should try Keppra. It felt weird for the first couple of months, but it did wonders for me as it has for many on this site."
Conclusion
My findings show that people with HPPD who respond with Keppra tend to cure or significantly impact DP in a short amount of time using Keppra.
I would like this to be a place for anyone who is trying or have tried Keppra, however I do not want reports under 3 months as I found on HPPD forum stories and as proven in the Keppra report that EEG's take this long to normalise, therefore this amount of time before patients can start to get results. Therefore I don't credit any stories under this as valuable, sorry.
EDITED based on TDX comment.
Keppra = Levetiracetam
Lamotrigine = Lamictal
Why did I research this?
Keppra is not something I have YET tired just to make that clear. Also like any meds this is just another angle, we all know there is no one size fits all and I am not arguing this, just another med that shows promise.
When I was having signs of HPPD (which has faded) 3 months ago (ps NEVER take too much Night Nurse or Nytol/DXM for the love of God) I started researching this subject extensively, even more than I had DP in two years as HPPD is intense let me tell you.
I ended up writing 4 pages + 50 or something credentials to show to my doctor, not set out to prove anything but the existence of HPPD and possible ways to treat it. Doctors do not know/believe in HPPD.
I used HPPDonline as my starting point and my research grew.
What is Keppra?
Keppra (Levetriacteam) is also a anticonvulsants, like Lamotrigine (Lamictal) which is used a lot on this forum also known to help DR / HPPD but Keppra (Levetiracetam) seems gold standard in HPPD. it's an Anticonvulsant, i could go into details but you can look this up yourself.
If someone could outline the differences between Keppra and Lamotrigine in the comments this would be great.
So what's HPPD got to do with DP?
From my research, people on the HPPD website seem to have DP as well although they tend to be more focused on the HPPD side of things than the DP itself.
EEG
Many of the HPPD patients on the forum have had EEG's and they seem to show the same abnormalities. This backs up the Keppra report on HPPD. (available on request).
"EEG assessments demonstrated temporal slow patterns in all patients" it goes on to say after 90 days into treatment, EEG normalized in "23/27 patients" with Keppra".
Okay so all this is great but where is the results relating to DP?
I'll put variety of stories in here to give you a range (so it isn't all fairy tails) these are all taken from HPPDonline:
Bare in mind all stories have extreme visuals changes including such things are morphing walls, visual snow and other changes causing anxiety all day as well as DP, DR. I have typed these stories out from screen shots and quoted the important bits to not make this thread huge.
Story 1: "....If you're feeling up to it take 1000mg in the am and 500mg in the PM the following week. That's the dosage the study suggested and that's exactly what I did. I would have to say it took about 3 and a half months for all my symptoms to subside"
Story 2: "I've been on Keppra since November. Afterimages, trails, dp/dr, social anxiety all greatly decreased. The first month on it i was horribly enraged and depressed but i soldiered on and now i feel great. I have been feeling the closest to normal i have in a long time...id say it took about 2 and a half months on Keppra to notice a difference...dont be impatient guys, definitely worth a try."
Story 3: "And YEAH, it improved my symptoms so much! My DP was lessen by maybe 80-90% and my visuals about 70% and this was only on 250mg 2x a day for 3-4 days! When the side effects were not prominent (that would be between the doses) i more or less forgot what HPPD felt like. So this morning i stopped taking it and i felt ok until tonight when HPPD went full blown and that was when i knew how much it helped me."
Story 4: "Well, i guess this is the "problem child" of mine. I had some occasional great effects with this meds. I have been completely DP free on it and great relief on some aspects of the visual. But i also had some problems with what i have identified as some kinda CNS arousal due to the med. Recently i had a couple of great days when i tried keppra together with clonazepam, it seems to suppress this arousal and the combo makes me feel almost completely normal. Strange feeling to all of a sudden feel your mind intact right behind your eyes instead of being completely scattered."
Story 5: "I will now stay on this daily dose of 1000mg for two weeks since it get rid of all my VS, swirling, DP/DR for now".
Story 6: "I posted a little on here a few months back. Some of you may remember me. Anyhow, I'm more or less all better. I don't take zoloft or klonopin any longer, just 1500 mg Keppra daily which is wonderful. Psychologically, I'm virtually perfect, with only little bits of lingering anxiety here and there but this is more than likely due to the fact that is just finished coming off of zoloft. No more dp/dr at all.
My visuals are very minimal at this point. I still get mild floaters, some light sensitivity and super mild visual snow none of which are immediately noticeable most of the time. I'm only 7 months in and I don't even feel like I have a disorder anymore. As if it hasn't been said enough, every single person with HPPD should try Keppra. It felt weird for the first couple of months, but it did wonders for me as it has for many on this site."
Conclusion
My findings show that people with HPPD who respond with Keppra tend to cure or significantly impact DP in a short amount of time using Keppra.
I would like this to be a place for anyone who is trying or have tried Keppra, however I do not want reports under 3 months as I found on HPPD forum stories and as proven in the Keppra report that EEG's take this long to normalise, therefore this amount of time before patients can start to get results. Therefore I don't credit any stories under this as valuable, sorry.
EDITED based on TDX comment.
Keppra = Levetiracetam
Lamotrigine = Lamictal
