how long to take Keppra? Lamo? Clono?

[TomHope]

Can you please advise me about Keppra?
How long should I take it for my visuals to improve?
I took Keppra for 2 months and nothing changed.
I took Lamotrigine for 8 months and nothing.
I tried 1.5 mg of Clonazepam one day. Viuals have not changed. How long and how much to take Clonazepam?

Or combination Keppra with Clonazepam or Lamotrigin?
My worst symptoms are Floaters and Palinopsia.
It keeps getting worse.
Thank you for the reply
Thomas

[yarkadin]

What you wrote about Keppra and Lamotrigine matches the information I have been soaking up here for the last few months - these meds have variable results for us.  Lamotrigine reportedly does soften symptoms for some but not substantially and the side-effects don't seem to be worth it (at least not for me).  I have no idea why they are mentioned so frequently in relation to HPPD.
 

Clonazepam/Klonopin did not substantially change my visual symptoms as I started them again recently... I sometimes feel like they may be reducing my problems by 5 - maybe 15% maximum but that is not significant.  Dosage and time may be a factor, however.  I have not taken more than 1 mg at a time as it knocks me out, and I take them irregularly so as to avoid dependency.  If medications only "work" when you are half-conscious then they are not a solution.

I will say, however, that benzos seem to have the best likelihood of offering some minimal relief.  There are some very interesting studies online of high dosages of Clonodine but this is one of those drugs that don't seem realistic to use for prolonged periods.

Edited August 21 by yarkadin

[AF44]

1 hour ago, yarkadin said:

What you wrote about Keppra and Lamotrigine matches the information I have been soaking up here for the last few months - these meds have variable results for us.  Lamotrigine reportedly does soften symptoms for some but not substantially and the side-effects don't seem to be worth it.  I have no idea why they are mentioned so frequently in relation to HPPD.
 

Clonazepam/Klonopin did not substantially change my visual symptoms as I started them again recently... I sometimes feel like they may be reducing my problems by 5 - maybe 15% maximum but that is not significant.  Dosage and time may be a factor, however.  I have not taken more than 1 mg at a time as it knocks me out, and I take them irregularly so as to avoid dependency.  If medications only "work" when you are half-conscious then they are not a solution.

I will say, however, that benzos seem to have the best likelihood of offering some minimal relief.  There are some very interesting studies online of high dosages of Clonodine but this is one of those drugs that don't seem realistic to use for prolonged periods.

It’s so strange how differently medication affects different people! When I took an 0.5 mg Klonopin the first time, I kid you not, my visuals pretty much were non existent and no DP/DR. (I was started on it I think 2009 or something?) I went from .05 mg in the morning and .05 mg evening. I was shocked. I remember telling my mother that I could actually SEE. I went outside and looked at everything I could with crystal clear eyes!!! Just because. Eventually I was on 1.5 mg for ages and I couldn’t even believe how great it worked. Of course, I built up a tolerance to it over the years and am on other meds (lamotrigine is one of them, I’m on 300 mg of it.) So now I’m on 3 mg Klonopin per day. I was still taking the 1.5 and at times would get terrible adrenaline feeling attacks. My prescriber at the time (years ago) said bipolar people think it’s a panic attack but it’s actually bipolar mania. He called it manic panic. So he goes, I’m going to double your dose of Klonopin (so, 3 mg per day.) I was like, umm I only take that for my HPPD, can’t I have something else to take when I have these attacks? I swear he acted like I hadn’t even said anything about HPPD. He said it was good to double my dose. So then I thought, actually, good because I can build a stash just in case someday they won’t give it to me and I’ll have enough to hold me over until I can get in with another clinic or something. I swear, I ended up with almost 3 full bottles of it hoarded. Then I’d be like, oh, maybe I’ll take 2mg because my symptoms are acting up. Then it became 2.5. Then 3 mg cuz I was like, well that’s what they prescribed me so…Then sadly I would dip into my stash if I was stressed or terribly anxious or had insomnia, or a particularly bad HPPD flare. So now it doesn’t work like it did at the beginning but works so good I can have “normal life” but I do still have symptoms and sometimes flares. Clonidine makes my symptoms WORSE. And idk why but I just feel like the lamotrigine helps a lot with my symptoms. So it’s interesting when I come on here and people say Klonopin didn’t hardly do anything for them cuz I’m like, WOW! It literally changed my life. I hope everyone on here is able to find some sort of relief medication-wise, or even without medication. And yes, benzos are a bit dangerous and if I were to be taken off of them God only knows what would happen to me. I would spiral into HPPD hell

[yarkadin]

When I first took Klonopin back in 2001 or so I thought they made some significant difference, it's true... I don't know by how much though.  I was still very traumatized and not thinking straight.  I have had this disease for over half of my life now and I am so situated that even if I am clobbered by the drunken lull of Klonopin I can tell with pretty high certainty whether I am doing better with the core symptoms or not.  It could be that over the years it is more difficult for me and I need more drugs for the symptoms to abate, that could be a factor.

At any rate it sounds like it is harmless enough to try the drugs TomHope mentions above to see if they do anything, but I would do all in my power NOT to become dependent on them and to use them on an ad hoc basis if possible.

[AF44]

On 8/21/2024 at 12:57 PM, yarkadin said:

When I first took Klonopin back in 2001 or so I thought they made some significant difference, it's true... I don't know by how much though.  I was still very traumatized and not thinking straight.  I have had this disease for over half of my life now and I am so situated that even if I am clobbered by the drunken lull of Klonopin I can tell with pretty high certainty whether I am doing better with the core symptoms or not.  It could be that over the years it is more difficult for me and I need more drugs for the symptoms to abate, that could be a factor.

At any rate it sounds like it is harmless enough to try the drugs TomHope mentions above to see if they do anything, but I would do all in my power NOT to become dependent on them and to use them on an ad hoc basis if possible.

I totally agree. For me, benzos helped so much but you do need more and more to achieve the same effect. Also, I can only imagine what the withdrawals would be like. I am constantly praying that I can keep getting it or I don’t know what I would do.