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A questions for anyone taking lamotrigine for their HPPD


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Hey guys,

 

just a quick question for any of you concerning how lamotrigine effected your HPPD.

How long did it take for positive effects to present themselves?

Did you experience any worsening of your symptoms when you first began your medication?

What dosage are you currently on?

 

I am personally on week two of my lamotrigine, and I've observed some worsening of my symptoms ,especially my afterimages.

 

Thanks!

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11 hours ago, Davidmckeon22 said:

Hey guys,

 

just a quick question for any of you concerning how lamotrigine effected your HPPD.

How long did it take for positive effects to present themselves?

Did you experience any worsening of your symptoms when you first began your medication?

What dosage are you currently on?

 

I am personally on week two of my lamotrigine, and I've observed some worsening of my symptoms ,especially my afterimages.

 

Thanks!

 

Although I can’t comment on lamotrigine specifically - because it caused me to have severe reactions to the medication (Muscle movement disorder and such) I’ve never been able to take it.

That being said it took me a solid month to month and a half on keppra to begin to feel it. What i’ve Read the most about lamotrigine is that most people who take it and notice improvement notice that improvement over a period of months, not weeks.

Stick with it, I think lamictal is mild enough that unless it’s causing severe agitation of symptoms, it typically won’t be non-reversible. My symptoms got better over like two weeks, and they were unbearable.

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  • 4 weeks later...
4 minutes ago, Davidmckeon22 said:

I think i will unfortunately have to terminate my consumption of lamotrigine, as i think it is worsening my symptoms noticeably; specifically my afterimages and trails/tracers. Coherently just upped to 125mg a day. 

@Davidmckeon22 you have only been on it for a month and a half - perhaps try staying on just 100mg for a few months.

 

With my keppra dosing it took at least 2 months for me to feel the positive change, and above that my improvement with keppra seems to be quite gradual - not something you'd notice in a week of dosing.

 

Alternatively if your sure you'd like to stop you can always try taking levetiracetam (keppra)

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Sorry, meant to say i have currently* just upped my dosage, progressing by 25mg per week.

I know that anti-convulsants take a substantial period of time to become completely effective. 

I'm just concerned by the exasperation of my symptoms. 

I noticed others on this forum have had negative effects produced by lamotrigine as well. 

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1 minute ago, Davidmckeon22 said:

Sorry, meant to say i have currently* just upped my dosage, progressing by 25mg per week.

I know that anti-convulsants take a substantial period of time to become completely effective. 

I'm just concerned by the exasperation of my symptoms. 

I noticed others on this forum have had negative effects produced by lamotrigine as well. 

Yeah that's my point, if your noticing an exacerbation at 125 mg but not 100mg, maybe stay on 100 mg for a couple of months.

 

The only reason I say that is because there's only really two medications out there at this point that present to you an actual cure over time. So if you exhaust both without really knowing for sure then that leaves you with no options right?

 

In the end it's up to you, just my two cents.

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I'm not sure, but I think I began to experience an exasperation of my symptoms at lower doses as well though, but perhaps lowering the dose may still be a good idea. 

I'm hoping that this may be the process that others who successfully alleviated their symptoms with lamotrigine experienced: a temporary worsening prior to a substantial improvement. 

 

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6 minutes ago, Davidmckeon22 said:

I'm not sure, but I think I began to experience an exasperation of my symptoms at lower doses as well though, but perhaps lowering the dose may still be a good idea. 

I'm hoping that this may be the process that others who successfully alleviated their symptoms with lamotrigine experienced: a temporary worsening prior to a substantial improvement. 

 

I had a substantial worsening of my symptoms in the first month of taking keppra; but I rode it out, and now find the improvement I've been seeking.

 

The way I see it, is if the worsening of symptoms you describe is tolerable, it would in my opinion be worth waiting it out for a month or two longer to see if things improve. The way I see it is that person from person, were not all that different - just like LSD gets everyone high, in theory lamotrigine should also give you the improvement that it's given others.

The case report done on the lady who did see improvement on lamotrigine was on it for 6 months.

 

If the symptoms remain tolerable, and after 2-4 months has elapsed and you still don't see improvement, I'd say try a different medication at that point. 

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17 hours ago, jbalsa2 said:

I had a substantial worsening of my symptoms in the first month of taking keppra; but I rode it out, and now find the improvement I've been seeking. 

Do you mind me asking which symptoms were worsened and how suring your first month of Keppra? 

Additionally, what improvements did you experience? 

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1 minute ago, Davidmckeon22 said:

Do you mind me asking which symptoms were worsened and how suring your first month of Keppra? 

Additionally, what improvements did you experience? 

In the first month of taking keppra, my visual symptoms, although not particularly worse, became harsher in intensity. By the I mean that my visual symptoms felt like they had more of a physical impact on my brain then they normally would.

Additionally, I became quite substantially more psychotic - to the point where after day 6 or 7 of treatment I was almost sure I'd have to stop therapy.

After about 2 months into treatment is when I noticed the effect (to a measurable extent) that keppra was having. It's improvements are primarily in depersonalization, derealization, and if I had to put it in words - the grip that my hppd has on my concious thought process. My hppd just feels more manageable on keppra, my depressive periods are much more manageable, and my condition is generally more stable.

 

Don't get me wrong I still have hppd - but there's a part of my old self that's returned again.

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1 minute ago, Davidmckeon22 said:

Sounds similar to what I'm experiencing - my afterimages have become more stronger for example. 

So the keppra didn't improve your visuals? 

Yeah, but not the visual snow for example - that's still very much there.

Before my visuals used to drag me into worse depersonalization if I zoned out on them or noticed them. On keppra I could stare at my visual snow for hours and not suffer a downward spiral of depersonalization.

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3 hours ago, jbalsa2 said:

Yeah, but not the visual snow for example - that's still very much there.

But an improvement of palinopsia etc? 

I'm struggling to understand why symptoms may worsen before they improve at all on medications like lamotrigine, given that every case I've read where individuals experienced improvement of symptoms never experienced a worsening prior to that improvement. 

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2 hours ago, Davidmckeon22 said:

But an improvement of palinopsia etc? 

I'm struggling to understand why symptoms may worsen before they improve at all on medications like lamotrigine, given that every case I've read where individuals experienced improvement of symptoms never experienced a worsening prior to that improvement. 

Yeah palinopsia is definitely very improved with keppra. I guess it's one of those 'youd have to try it to know what I mean' type of things.

 

With keppra; keppra causes some central nervous system arousal, and it's actually indicated that keppra can cause psychosis on its own in otherwise healthy individuals.

 

You know how HPPD is, mess with any other part of your brain and bam your hppd winds up getting worse. So it's in that sense that keppra made my symptoms worse for a while.

 

Everyone's different, I can't be you to know whether you should continue lamotrigine or stop, but im just going off my own sense of judgement.

 

Sadly for me I couldn't take lamotrigine at all as it caused me severe motor function and movement disorder related impairments. My body practically tried to rip it's bones out of its sockets automatically on lamotrigine. :(

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1 hour ago, jbalsa2 said:

Yeah palinopsia is definitely very improved with keppra. I guess it's one of those 'youd have to try it to know what I mean' type of things.

 

With keppra; keppra causes some central nervous system arousal, and it's actually indicated that keppra can cause psychosis on its own in otherwise healthy individuals.

 

You know how HPPD is, mess with any other part of your brain and bam your hppd winds up getting worse. So it's in that sense that keppra made my symptoms worse for a while.

 

Everyone's different, I can't be you to know whether you should continue lamotrigine or stop, but im just going off my own sense of judgement.

 

Sadly for me I couldn't take lamotrigine at all as it caused me severe motor function and movement disorder related impairments. My body practically tried to rip it's bones out of its sockets automatically on lamotrigine. :(

I did try keppra a while ago, but it was during an anxious period so I ended up coming off it at a low dose of 250mg. I found that I felt quite aggressive as well, and that my libido was impaired when I was on Keppra. 

I noticed on an older post you stated that you even experienced visual improvements on Lamotrigine, so that's a shame about the skin reaction.

Given the stronger afterimages and their increased frequency, I think I will taper off Lamotrigine. 

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Yeah that's exactly what I experienced on keppra, and it subsides. After a month of treatment the symptoms stabilize and you get used to the feeling of constantly being on keppra, which winds up being the as!e symptoms but at a very low level; where you don't notice the symptoms much to the point that they actually affect you severely.

Sadly that's the thing about medications - you will feel medicated when on them. Just the way it goes.

 

I take .05mg of clonidine twice a day as well, this med can be helpful with the initial onset of keppra, and I take it anyways to help with physical symptoms of anxiety.

 

If you want the benefit, youl have to ride the onset symptoms out unfortunately. That's the nature of hppd.

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Yeah my father is on a high dose of Keppra for epilepsy and he said a similar thing. 

So you experienced the loss of libido which eventually subsided? That makes Keppra seem a bit more appealing.

I agree with what you're saying, I'm just concerned that rather than this simply being a worsening of symptoms as an onset thing, it will remain unless I stop taking the medication, like others have stated. 

I have yet to find anyone who has experienced a worsening prior to improvement, especially for lamotirigine. 

Edited by Davidmckeon22
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Lamotrigine gave me an improvement of symptoms right up until the point where it gave me severe muscle movement disorders. There was no ability to continue lamotrigine for me; it was stop or go to the hospital.

If anything on keppra, I've grown to like the stimulanty way that it makes me feel. I've noticed each brand feels slightly different - I take the Aurobindo brand generic because it has a more stimulanty feel to it, although I haven't noticed any change in libido. But that'll change from person to person.

The name brand version of keppra made me extremely tired and somnolent.

If you do try keppra, do two weeks at 250mg twice a day, and then go up to 500mg twice a day after two weeks. If after a month you haven't noticed the improvement or augmentation of some of your symptoms; you'll have your answer.

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