Going to give Keppra a trial

[ludwig80]

I just got a script for Keppra. I have it filled but I'm still slightly apprehensive about taking it. Mostly cause i'm worried cause I really don't want anything to get worse.

I haven't taken any real medications since 4 or 5 years ago when i first got hppd(few xanax and about of month of paxil). Didn't feel right on the paxil so ditched that asap. I know this worked well for Merkan and Eric so I thought i'd give it a run. Been on the ketogenic diet for a long time(occasionally messing up but fairly strict) now so hopefully this will supplement ok.

Anyone have any advice as far as when to take them, splitting up dosages(said to take 1 x500mg a day for a week then two after that), supplements that may decrease side affects, or anything to pay attention for?

Thanks in advance friends.

[pennyarcade]

Best of luck mate, my only tip is to supplement with b6 to help with "Keppra Rage" if you experience it

[keep positive]

I take Keppra and experience zero side affects. It's been a wonder for me.

[Jay1]

Work up slowly... I'd maybe even try and split that pill into 1/4s... 125mg x 2 per day. Then onto 250mg x 2... x 3... then 500mg x 2 if you are not feeling any side effects.

I was side effect free, but I know other people had a bad reaction. If you do get up to a high level and want to come off... remember to taper slowly, I got some very bad effects from stopping too fast.

Good luck, Jay

[VisualDude]

Glad that you are trying something. Just like the advice above, go slow and take B6.

I haven’t tried Keppra but have tried Depakote. It did nothing for visuals but was mildly calming. Since that is all it did it was discontinued.

Please keep us informed on how you progress.

If remembering correctly, you do not have visual snow (?)

[Merkan]

Ludwig>>

I cannot tell you about specific doses only that it is very individual. I know people who need 2000mg/day and some that need only 1000mg/day. The "normal" start dose is 1000mg/day divided in to two doses for A-Z patients. Most people (but not everyone) that responded to the drug will now it in a couple of days though it takes a month to really know its effect (i guess this could differ). If you do not see any improvement on the highest dose decided with your doc, tapper it like Jay says. Your precsriber might not be concerned about it but you should. Its not like benzo but your brain will need it even if you did not get any effect.

About side fx, i shouldn't say "don't worry too much" but really, it wont kill you or harm you permanently if you take it as prescribed. You'll know if something does not feel right and you will know when to pick up the phone and call your doc, IF you get side fx.

Remember that if you follow a strict ketogenic diet there is a chance it'll boost your Keppra. A strict diet imo is max 15grams of carbs each day but this can vary.

Cannot say too much about Keppra except that it gaved me my life back and if the drugs thats being used in the Abraham trial won't give me even better relief this will be my life further on. I do however seem to be VERY responsive to medication thats been good to HPPD symptoms. Both clonazepam and Keppra but also lamictal, valproic acid etc.

[ludwig80]

Thanks everyone. Really good information.

Penny- Heard about this, so I will definietly be supplementing this. Probably need a B-complex with everything anyways.

Positive- Good to hear, Seems like it is worth a shot.

Jay- Thanks for the heads up on tapering and building up. I think this is a great plan and will be sure to follow it

Visual- Actually I do have definitely have visual snow all the time, but doesn't bother as much as trails/slow frame rate stuff. Pretty sure I've had the majority of HPPD symptoms at one time or another.

Markan- Great info- I"ll be starting at 1000mg, tapering/building as Jay said. I'd say 6 out of 7 days a week i'm on a pretty strict Ketogenic diet. Probably under the 15 g of carbs(Though I thought 100g was pretty strict, guess not). I usually end up being late one day and not having time to cook something so end up blowing my diet for a day. Really I've been doing candida diet(very similar to keto) since last august, pretty strict for about 8 months and fell off for a bit to see if it helped. So i need to get back to being serious. Such a pain in the ass though.

Haven't started cause have school finals/ longg road trip and a gig very soon and just in case it effects me negatively I don't want to have all this stuff under my belt at the same time. Soon though.

[gill]

Advice? You may want to stay away from guns, knives, and other sharp objects.

[gill]

To be serious though, yeah, you gotta be cautious of getting really irritable. That was my main problem when I tried it......

[windscar]

Always keep whey and some ready to eat meats like ham, turkey breast for hose cases... and beware. If you THINK you are eating 15g of carbs you are probably eating more, because of hidden carbs everywhere (remedies, rounding, wrong labels)...

[HBB]

I took it, after years of desperate searching, and it cured me. That's no exageration. It was literally going to be the last medicine I tried before I killed myself... and it worked. Not placebo, positive-thinking it worked, but real, chemical-alteration the-symptoms-are-gone worked. It worked so well for me I think everyone must try it.

The only side-effect I noticed is known colloquially as "keppra-rage," aka increased aggression. I think I did experience this slightly, but again, it could have been natural built-up rage at life for getting hppd. I can really say nothing bad about it. If you need it, I have a file about 45 pages long that I stappled together of user-feedback of positive results from keppra that I brought to a random general practitioner at my college. He was like "well, it looks like you've done your homework. I don't see how startin you off on just 250 twice a day can do you any real harm." I remember it like it was yesterday, but it was almost exactly a year ago.

Try it. I noticed it worked after, honestly, about 2 weeks. This may have been placebo. Almost no medicines build up enough pressence in your body to have an effect that fast, at least not anti-depressant sorts of medications. Keppra is actually an anti-convulsant, so perhaps that is why it worked. Or it was perhaps placebo. I would not abondon it until you've been on it two months, and have gone up to 1000 mg per day.

[Merkan]

HBB>> can you tell something about the rage, when it came and how you beat it. What dose worked for you if you care to tell.

[ludwig80]

I took it, after years of desperate searching, and it cured me. That's no exageration. It was literally going to be the last medicine I tried before I killed myself... and it worked. Not placebo, positive-thinking it worked, but real, chemical-alteration the-symptoms-are-gone worked. It worked so well for me I think everyone must try it.

The only side-effect I noticed is known colloquially as "keppra-rage," aka increased aggression. I think I did experience this slightly, but again, it could have been natural built-up rage at life for getting hppd. I can really say nothing bad about it. If you need it, I have a file about 45 pages long that I stappled together of user-feedback of positive results from keppra that I brought to a random general practitioner at my college. He was like "well, it looks like you've done your homework. I don't see how startin you off on just 250 twice a day can do you any real harm." I remember it like it was yesterday, but it was almost exactly a year ago.

Try it. I noticed it worked after, honestly, about 2 weeks. This may have been placebo. Almost no medicines build up enough pressence in your body to have an effect that fast, at least not anti-depressant sorts of medications. Keppra is actually an anti-convulsant, so perhaps that is why it worked. Or it was perhaps placebo. I would not abondon it until you've been on it two months, and have gone up to 1000 mg per day.

Beyond happy for you friend for finding something that works. I read your story, I know the nightmare HPPD can be and passing through those tribulations to see dawn takes a seriously tough person. So congrats.

Did it happen to help any of your visuals or just cognitive side?

I wouldn't be too surprised if the Keppra rage presented itself. Most people would label me as the calmest person they know because I'm rather lethargic but I must be a good actor too. There are times when HPPD gets me so annoyed and frustrated for a week or so and anything makes me angry, although I never show it, which likely isn't healthy; I'm trying to get better at expressing emotion though. I'll defiinietly be supplement some B vitamin in case.

[HBB]

To Merk,

I am strange in regards to aggression. I played football, and was evil as shit when I did. However, off the field, I was entirely different. I got sort of mentally picked on. So I think I've always been strange when it comes to rage. I am extremely, extremely placid now, though have recently become quite unsatisfied with the rate of the rebuilding of my life, and actually just got done screaming at my Xbox, because I know I am an addict to it. That should give you a clue to the sort of strange manifestations my anger takes.

The one instance I remember of sort of out of the blue increased aggression was kicking something, I don't remember what, and I stil have the mark on my foot from it. I also screamed at a redneck mother and father who were pushing their baby in its carriage on the actual road. I cussed at them, which I don't think I would have done.

I really did not have to overcome it in any notable way. I wish I could say more about it. Maybe I take out anger in other ways. I have never been the kind of person comfortable with showing emotion really of any sort in public, so perhaps I am more reigned in just overall. I am currently taking 1500 mg right now. I only noticed increased aggression in the very beginning. I believe I bumped up from 1000 to 1500 probably after 4 or 5 months of taking it.

To ludwig,

Yeah I think you are like me with emotion. Expressing it has been a difficulty I've always had.

My visuals I don't think have changed at all, but the cognitive has changed 90 percent or more. I am more functional now, post HPPD, than I was when I just smoked a fuck ton of weed in highschool, but was not debilitated utterly by HPPD.

Thanks for the kind words, too. I think I survived mostly out of just sort of fear of dying. It was not heroic. I was just a scared animal that didn't die because of instinct to be quite honest. There were some times I suppose it was, but for the most part, I simply ate narcottic-type foods constantly and played videogames constantly. I also got As and Bs in college while I had all this shit, so I did bust my ass to do that, but that was just sort of like a hollow way to not be broken. I mostly say that so that anything I say that I mean seriously from a psychological perspective will be taken somewhat seriously. Think I had about a 3.6 gpa at the end, but I haven't bothered to look.

During hppd, I literally could not execute a sentence such as "Can I get change in quarters, please?" without stumbling the words out. That's how fucked up I was. I just remembered now what also motivated me to do mental work: it was the only way I could sort of part the fog of HPPD, the mental fog. After I'd crammed all night, I would almost, almost feel normal the next day, mentally. Man, it's only been a year but I'd already forgotten that. So yeah, not heroic while it happened. Just was scared to die. Just couldn't quite do it.

As to the B vitamins, no clue if that'll help or not . Good luck man I hope it helps. You too merk. Lemme know how it goes.

[Merkan]

HBB> intersting, all my visuals symptoms went away with keppra. The cognitive issues as well. I feal smarter then before hppd. But i do not get the emotional drive that i used to have. Thats why i wanna try levodopa.

[HBB]

Merk,

Very interesting. That's weird as hell. I am not sure i feel smarter than before hppd entirely. Close. Perhaps more so, functionally at least, from just the mental strain of college. Hard to tell.

As for the emotions, I was sort of in denial until about a month ago when i screamed about all this heinously pointlessly cruel bullshit that hppd is. So maybe that could be part of it.

What's up with Levodopa never heard of it.

[Merkan]

I should say that i use clonazepam in a low dose but i did that before Keppra so i cannot say for sure if it is only Keppra, but it seems like it is the no 1. for visuals since my visuals comes back when i lower the Keppra dose alone and clonazepam on a low doze did not do much when i took it alone. I will try to lower my clonazepam dose slowely just to check if the visuals will come back.

The levodopa is a short term thing that seems to make some people a lot better of feeling "normal" for a short amount of time. This is a parkinsons med and nothing to play around with on your own since it effects your liver but it seems to be the next "big" one in the order Clonazepam>Keppra>Levodopa when it comes to functional HPPD meds. To anyone reading this since the levodopa is in the open on the web, all of these meds have their potential hazards, all different, Make sure to consult your doc before doing anything hasty.

When it comes to smartness it kicked in when i started the ketogenic diet and was on it for a while. I just understand how things work at the first glance.

Merk,

Very interesting. That's weird as hell. I am not sure i feel smarter than before hppd entirely. Close. Perhaps more so, functionally at least, from just the mental strain of college. Hard to tell.

As for the emotions, I was sort of in denial until about a month ago when i screamed about all this heinously pointlessly cruel bullshit that hppd is. So maybe that could be part of it.

What's up with Levodopa never heard of it.

[VisualDude]

Merkan,

The levodopa is a short term thing that seems to make some people a lot better of feeling "normal" for a short amount of time.

Couple questions,

Are you speaking of taking levodopa by itself or with carbidopa?

What do you mean ‘short term thing’ or 'short amount of time'?

[Merkan]

Levodopa is L-dopa with cardiodopa.

Short amount of time, works for some hours.

Merkan,

The levodopa is a short term thing that seems to make some people a lot better of feeling "normal" for a short amount of time.

Couple questions,

Are you speaking of taking levodopa by itself or with carbidopa?

What do you mean ‘short term thing’ or 'short amount of time'?

[VisualDude]

Thank you for clarifying your meaning – I thought that perhaps you meant that some members here had benefit for a few months then it lost effectiveness.

Here are a few corrections though,

Levodopa is L-Dopa

Sinemet is carbidopa with levodopa. Levodopa is very HARD to take because of the peripheral (body) effects. The name Sinemet actually means without vomiting – because most people (including those with Parkinson’s Disease) cannot tolerate levodopa without puking.

Dopamine cannot cross the blood-brain barrier. But Levodopa can and it is a precursor for the brain to produce dopamine.

Carbidopa is more chemically ‘active’ than levodopa but similar to levodopa.

Levodopa,

Carbidopa,

However carbidopa does nothing neurological. It is used as a ‘decoy’ so that the body doesn’t get sick on the levodopa. Since carbidopa cannot cross the blood-brain barrier, while the body is busy with it, the levodopa is left remaining so as to enter the brain. (for what it is worth, the effect and use of carbidopa was discovered by accident)

As for Short amount of time, works for some hours,

Technically the half-life of levodopa is very short ~45 minutes, however the effect can last for days. People with early PD can do great with just 1 dose a day. When it is very advanced, then many doses are needed.

Because it is a precursor instead of a true agonist, this ‘inconsistency’ happens.

As for it effects your liver, nearly everything you take into your mouth affects your liver.

Carbidopa/levodopa is a particularly safe medicine. It is, in practice, largely a geriatric medicine (a population of people with reduced hepatic and renal functions) since on average the early signs of PD start in a persons 60’s. For these people, periodic testing of liver function is done if they are taking large doses.

With the doses I take, my doctors are not even remotely interested in liver testing – in spite of taking several other meds as well and occasional alcohol use.

As for nothing to play around with on your own,

I agree – all prescription medicine should be obtained legally and with supervision of a doctor. Don’t take anything bought on the street.

[Merkan]

Visual>> thx for that

Can you drink without problem? I get hppd symptoms for months post drinking.

[VisualDude]

If I drink, I feel the effects of drinking at the time and it has no effect on my symptoms.

However, the next day, anxiety is higher. Also there is more fatigue. Within a day or so, there is no lasting effect. But the more I drink, the worse the next day. Usually only have 1 or 2.

As a rule, if I want to feel the best, avoid drinking altogether. However, there are days I just have a drink anyway.

Oddly, since starting Sinemet (carbidopa/levodopa), alcohol has less effect at the time of drinking.

There is a general attitude among the Parkinson's communities that it is important to moderate drinking

Hope this helps (and am not being a bad example )

[Merkan]

I wish i could drink the occasional pint or two just for social causes, but alcohol is a "no, no". I did not drink very much at all post HPPD but there is a lot of social stigma about it.

[ludwig80]

I wish i could drink the occasional pint or two just for social causes, but alcohol is a "no, no". I did not drink very much at all post HPPD but there is a lot of social stigma about it.

Know this all to well..

[ludwig80]

Alright so about 4 weeks out on Keppra. Not a huge noticeable change yet.

For documentation purposes I thought I'd relay how things are going.

Started .125 mg x2/day for about a week

then .250mg x2/day for three weeks

this week started .250 x3/ day

Each time I jump my main side effects are extreme fatigue. After a week or two I start to get used to it and doesn't effect me as much so far. Well see as I increase to 1000mg/day. Haven't had any seizure like issues since starting it. Vision hasn't changed to much at this point, however I "want" to say it's gotten slightly better. If nothing else then perhaps the Dp/Dr has gotten slightly better, We will see when I moved up in dosages. The trails don't seem as bad as they were, though, very much still present and I could just be over analyzing and wanting this. Some vision issues not common to this board that i've seen have seemed lighter but I find a fine line between hppd and my myopic astigmatism in some symptoms.

Cognitively, I feel a bit quicker to the draw, forget my words less, can recall quicker, despite the fatigue. Don't necessarily see dramatic change in vision at this point. Perhaps I feel that Ii'm not fixated as much on these issues as i was. Still there though. I feel myself subscribing to Gill's thoughts about OCD being a factor to some degree. Getting locked in this loop of constant checking and dwelling on it seems to be a factor.

Today I did notice that PULSING visual snow was a bit more intense in the classroom than normal. Lots of pulsing, I think I remember jay have something similar.

Read alot about Keppra's dekindling ability to heal certain injuries that occurred to the brain. So i think it general it may be a good medication to give a good long run if significant side effects are initally present.

Sorry if this post is a bit scattered, i'm rather tired at the moment.