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LaizzesFaire

Trying Lamictal/Keppra

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Hi, hope everybody is doing good and enjoying the summer

 

A quick update on my current situation:

A little while back I decided to try the med route. Initially I was prescribed Sertraline (and also Clonazepam to battle the increased anxiety during the first few weeks). The SSRI did work for the depression I was going through at the time, but after realizing it made my visual symptoms worse I quit (floating effect when looking at pictures/objects to be specific). Kept using the Clonazepam as it worked great for anxiety which was really helpful during finals, and also it gave me "a break" sort of. However I found it increasingly difficult to limit these breaks and luckily got off them after getting back home for the summer (Still have some Diazepam laying around just in case). I´ve finally convinced a doc to let me try an anticonvulsant and had some few questions regarding it.

 

1. The doc wanted to try Lamictal first. Would it be a problem to taper down and switch to Keppra later if it doesn´t work? Keppra is my first-choice, but I´m also fine with giving Lamictal a shot

 

2. Any recommendations on dosage? I think we agreed on starting with 25/mg and increasing with an additional 25/mg every two weeks until I reach 200/mg (Lamictal)

 

3. Useful studies I could bring to my doctor´s attention? I´ve already printed out some abstracts and articles, but if anybody knows about a specific study worth looking into that would be great.

 

4. Any interactions with benzos, alcohol or nicotine? I use nicotine daily and drink once in a while when socializing. Trying to stop the latter though.

 

 

Thanks

 

All the best, Laiz

 

Edit: Just got a call from the doctor, I´m actually gonna start the Lamictal trial today (25/mg a day as agreed).

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I think Lamictal actually has more potential for hppd. I think I got up to 100mg a day before I tapered off after getting a rash.

 

From what I remember, drinking, smoking and benzos were ok... but check with your doc.

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Thanks for the quick reply Jay! That´s good news. I asked the pharmacist about it and she just told me to take it easy with the drinking because it might make me nauseous. Keeping my fingers crossed that this´ll work, but trying to not get my hopes up in order to avoid disappointment. If you remember, did it provide any benefits (visual reduction, mood stabilizing etc) before you got the rash?

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It was not a major cure or anything, but i noticed maybe a 20% reduction in VS and just felt generally more clear headed and less messed up.

 

I really want to try it again, as I think I jumped the gun on the rash.... Now I am in the UK though, meds are much harder to come by :(

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Unfortunately it did nothing for me.  I was at the highest dose.  Coincidently and it must be a coincidence, I woke up with VS when I was on Lamictal.  The VS started 1+ years after the trails and after images started.  Every human body is somewhat different so it may work for you.

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I´m just gonna provide a little update from time to time. It´s been a little over one week now and still at 25/mg a day. Mood swings have been reduced and I feel more stable throughout the day. Also, I no longer catch myself staring blankly into space (felt like mini-seizures). No improvements or reduction of visual symptoms though. DP/DR might be a little better, but I´ve gotten pretty used to it anyways so that might be placebo. I´ll increase the dosage to 50/mg pretty soon.

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Lamictal would be my first choice over Keppra.  Looks a little more promising. 

 

The "staring blankly into space" sounds like absence seizures to me: http://www.epilepsy.com/learn/types-seizures/absence-seizures.

 

Keep us posted!

Yeah, it really felt like absence seizures. Thanks for the link. However, I was always able to "snap out of it" if someone was talking to me. Anyways, I´m glad they´re gone. I´ll be back in a week or so and provide u guys with an update. Drinking, benzos and smoking seems fine, but I´ll try to take ti easy just in case,

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Laizzesfaire my friend, would you consider stoping the drinking and smoking for the greater good?

I loved a drink as much as the next bloke, i have recently been trying different varieties of Non alcoholic beer. I honestly cant taste the difference. Or is it more of the buzz a few beers gives you.

Not to be critical mate but more just curious

Good luck with the meds trial

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Well, I only smoke (cigs) when drinking. Gotta stop that though. Haven´t touched weed after I learned about HPPD. A little off-topic but I sometimes find myself in social situations where people are enjoying the bud all around me, but that has never had an effect on me..Which is kinda nice so I won´t have to run out of the room every time someone lights up.

 

As for the alcohol, it´s funny that you mentioned non alcoholic beer cuz I´ve also recently tried to have a couple as a replacement. Problem is I love me some good red wine. I guess it´s a combination of taste and buzz. Also, it´s very hard to participate in social settings as the sober dude, but I´m getting better at that as well. It´s hard to escape the integrated Dionysian release pattern in our highly Apollonian society. I am determined to get on the sober bandwagon before too long tho. Makes me wanna move to some cabin in Alaska or somethin´. Anyways, I appreciate the concern Jimmy!

 

Med-trial update: Currently at 50/mg and things are slowly getting a bit better.

 

* My memory and thinking is better, except for recalling words.

* Overall mood is a lot more stable, same goes for anxiety (no crazy spikes etc).

* Dp/Dr is improved by roughly 10-20%. On good days it´s down 50%

* Visual snow also improved by 10-20%, only noticeable in dim lightening and at night

* This one is kinda hard to explain, but things are less "in my face" all the time. Watching action movies, reading walls of text and walking around outside is not really a problem anymore. This symptom tend to be more prominent while I´m driving.

* Trails are slightly reduced.

* The "sheep-stare"/absence seizures are gone.

 

So all in all, things are starting to look up. Hopefully I´ll see further improvement when the dosage is increased. I urge people to try Lamictal or Keppra so we could get several ongoing trials. I´ll be back in a week or so. Take care!

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Laizzesfaire my friend, would you consider stoping the drinking and smoking for the greater good?

 

Looking back at my previous post I can see how it might look like I indicated smoking weed and not cigarettes. I apologize for any confusion :)

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So I´ve upped the dose to 75/mg, no noticeable difference as of now. Think I´ll wait until 200/mg before deciding wether to quit it and give Keppra a shot or stay on it for a while.

 

Off-topic: I bought some basic reading/computer glasses too minimize eye strain. It´s been a blessing and sometimes I´ll use them outside because even though I can´t see a goddamn thing 100 feet away from me, they really make everything less "in my face" and the eyes feel more relaxed. 

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So it´s been a while now, currently taking 150 mg a day. Sometimes I´ll forget to take it before work, which usually makes me feel extremely spaced out after a few hours.

 

Some new observations:

 

  • DP significantly reduced at 150 mg, probably about 40 % and even 70 % on a really good day
  • DR not so much, but there has been moderate improvement
  • Ghosting kinda disappeared at some point. E.g. I see a single moon now with a faint outline of another. Used to see three copies of it not too long ago

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My neurologist will call me tomorrow. It's been 5 weeks since I did my EEG, and I will receive the results tomorrow probably. That's a long time from reading an EEG.

I know what she's gonna say. "Everything is just fine!" I wish it was. However, I'm gonna convince her to subscribe me Keppra tomorrow because something has to happen. Wish me good luck with that!

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Sorry guys, I try to take a break from this site sometimes as it helps me focus on other things.

 

I actually ran out of Lamictal and had a hard time setting up a doctor´s appointment as I moved to a new city recently. Felt pretty weird the first couple of days and DP/DR increased significantly. Luckily I was able to get back on my daily dose of 200 mg a day and DP/DR once again decreased substantially. So I guess in a way it was nice to confirm that the medication works. With respect to visual symptoms I haven´t really seen any improvement and ghosting returned at some point for unknown reasons. However, my new job is pretty hectic and I´ve noticed that I rarely think about the visual stuff when a lot of stuff is going on. Same goes for DP/DR. I would advise people to at least give Lamictal or Keppra a shot and wait until you hit the 100-200 mg range before deciding whether to continue the trial or try something else. I´ll be back with an update in a little while!

 

Good luck :)

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Great that it's working out well for you. Sounds awesome that you moved to a new place and got yourself something to distract you as well.

 

I got super surprised when my neurologist told me that my EEG (!) was abnormal. Does that mean that my HPPD is superior to others or what.. However, I asked her about Keppra, and she said that was the reason why she wanted to talk to me on Thursday (!). Fuck yeah, someone understands me, and it's my first neurologist, I guess I'm lucky because it seemed like that she's done some research on this one. Great stuff. So hopefully I'll be starting my trial on thursday. And I know it's not a one hit wonder, but if it just helps slightly so I could get some parts of my life back I'd be grateful. Isolation is killing me.

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Shadowplay, sounds great! Can't wait to hear what kind of anomalies the scan result shows. I will do the same when I have more time to concentrate on this issue. :) (y)

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My neurologist couldn't find the results in the database due to some update on the software, but I'll get a copy in a couple of weeks. She mentioned abnormalities in the left temporal lobe. Why does that sounds familiar to me?

I'll have a PET-scan made in a few months too. The queue is quite long but according to the latest research this type of scan is very sufficient so I'm being patient.

250 mg Keppra at night has reduced my DP/DR with 50-70% I would say. I've got a lot of feelings back which feels great! No side-effects. Slightly improvemed starbursting. No other visually changes.

I will up the dose to 250 mg twice a day in 1,5 week. Hopefully a dose during the day will reduce my visuals too. I really would like to skip a floaters only vitrectomy. Well atleast I don't want to die anymore and I feel more or less like myself again.

I'll have to wait a few days and see of these effects are lasting due to HPPD having its up and downs but if they are then I'm sure I can live a relative normal life after all.

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Thanks for the answer, Shadow! Temporal lobe abnormalities... I've read / heard something about that. ;)

That sounds like a huge improve. Thumbs up for your success with that, maybe you will get all the DP/DR go away. I'm going into the tropics soon to get a little color on my face, good mood and enjoy the sun. All that have helped me so far. Long, dark winter times are not something I love. Not pre-HPPD and even less now. :)

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Fuck keppra rage, barely can deal with my girlfriend at the momemt. She is so irritating and arrogant. Turns me into some douche. Had some sick stomach issues today too. Hopefully this will pass soon.

 

Otherwise than that I had a great day, watched a movie (don't pick 3D when you got trails) and met some old friends, that I actually could recognize, have a few laughs and I didn't feel weird at all.

 

So the DP/DR is most definitely lifting and my mood is a lot better except when someone annoys me. Oh well it's worth it. I rather have bad nerves and a shitty stomach than not being able to recognize my own sister. Sometimes I get a happy rush as well, prob the GABA that gets effected from Keppra. Always nice.

 

Hopefully the bieffects will pass though. On 250 mg morning and night atm.

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