ramblingon

It's actually Keppra, not a generic. For now, anyway, as it is more expensive. So my doctor gave me the prescription, it's 500mg pills, he directed me to just start taking 1000mg a day (2 a day, morning, evening) but I took it into my own hands to tapper myself up slowly. I was going to start with half pills, 250mg a day, but I ended up just taking one a day. On my 3rd day now.

So i'm currently taking 500 mg a day right now, and have not noticed any ill side effects. In fact things have seemed a little better to me, trails are a tad bit better I think, but it's hard to tell. But mostly I have my quick wit back, and the brain fog is almost non-existant these last few days. I know it's supposed to take time to build up, but i do think i'm noticing a difference even since day 1. I'm going to keep going with 500mg a day for another week and a half, then try and go up to 1000mg a day.

I may be psyching myself out, or just too gung-hoe about it right now - but no side effects for me yet, and doing well these first few days. I'll update in a week or more when it's settled in and i've had more time to figure out what I think and notice about it.

Well, got my prescription, just need to get it filled. Probably start tomorrow with Keppra. Anything I should know? I'll fill you guys in on my experience here to propagate knowledge and what have you.

Hey Boogres, hope it helps you. Keep us updated?

Thanks for the responses everyone. Really appreciate it a lot. This website is kind of a godsend for me at this time. Anyways, i have a torn ACL, going too get the surgery. Skateboarding is a cruel mistress, but i love it.

Hey HBB, great post. It's good to hear. Truthfully, I think of suicide just about every single day, and have for a while. Then I often think, well, my parents shouldn't have to outlive their son, so that love has kept me alive for a while now.

But i'm interested in keppra. I keep hearing about this medicine. I'm diagnosed Bipolar, have had that diagnoses for about 6 or 7 years. I've read keppra is used to treat that as well, and don't think it would be too far a stretch to get my doctor to prescribe, but i'm not really sure how to go about it. I'm certainly willing to give the medicine a chance though, at this point. The visual aspects of HPPD can be daunting, but they don't bother me near as much and the brainfog/cognative/mental/depersionalization aspects I often get. I feel these syptoms are what are truly preventing me from living my life at this point.

I even have a list of testimonials to the benefit and effectiveness of Keppra for other people that I compiled in my last ditch attempt to not kill myself, and it is quite honestly what I think convinced the doctor to let me try it. I still have this file that I would love for everyone to have if they want it.

Would you mind sharing this with me? Also any knowledge you have about Keppra, ect...I would be very grateful for.

Well guys, I seem to have done some damage to ligaments in my knee requiring surgery. My first thought is damn, I want to be able to use my knee. My second though is about how the drugs/being put to sleep for surgery will effect my hppd. I'm sorry for this post being so vague, I don't know what i'll be doped up on and such, but i recall reading peoples HPPD worsening or appearing after having been put to sleep or something. Again, sorry, i can't be more detailed, i don't know.

Maybe i'm being paranoid, but I've only been living with HPPD for about 8 months, and I feel it is just now becoming more pradictable/managable/setteling in, if you will. I've been sober for a long time, even over the counter drugs, and i have somewhat of a fear about the drugs they might put me on for this surgery and if they will potentially worsen my hppd symptoms. Any advice? anyone been through this/heard anything? I can't have my hppd getting worse.

Thanks for the reply 1998. I'll look into muscle relaxers. Now that you mention it, you're absolutely right about exercise. I skate every evening for a couple hours or more, and it goes away (skating, when it comes down to it, is just a ton of cardio I suppose).

Also Coffee/caffeine works quite well for me too. I've been a coffee addict from a young age, and I find the head pressure always gets litter after a cup of joe or what have you.

But i really believe exercise is key for it for me, appreciate the feedback!

have a good one '98!

I know i'm not the only one experiencing this, I've read other accounts of it around the web, but I have immense pressure in my head, particularly the frontal lobe area for me. When it's there (90% of the time) I can't think clearly, I feel like a zombie, things I used to understand are not clear to me. It's like I have an anvil on my head.

Anyone else have this pressure in their head?

It is by far the worst symptom to me. I could not care less about the visual symptoms, sure it makes driving at night near impossible, but to be able to think clearly and use my mind would be god damn amazing. My Brain chemistry is screwed up or something, i'm pretty sure, I feel like half the man I used to be.

If anyone else has experienced this symptom, have you ever found relief from it?

Also: something strange, this pressure occasionaly goes away for a while, like a couple hours, usually at night - it's great, but i have no idea why that happens. Usually worst right int he morning, doesn't get a whole lot better throughout the day, sometimes i get some relief at night.

I think i'll give it a go, i've actually been on it once before but that was years ago, pre-hppd. Thanks 1998.

just my 2 cents here, fish oil literally made me trip out at first, now it's not a huge issue. I took 500 mg vitamin C a few days ago, and i did notice my symptoms got a little worse, but it was what I consider back to baseline fairly quickly. I'd like to hear other people experiences though, not sure why things like vitamins/fish oil had those effects.

Does anyone with hppd have experience with Depakote? My doc says it would be beneficial for me for other reasons (bipolar) but from what i've read about it it's also used as a treatment for epilepsy, and I vaguely recall people using other medications for seizures that helped with hppd?

http://en.wikipedia.org/wiki/Valproate_semisodium

At any rate, if someone has tried it, i'd like to hear from them, mainly because I don't want to risk making my hppd worse.

Hey 415_Style, thanks for the reply I did find it helpful and appreciate the comments and advice. Hearing from you people in the same boat is truly great for me. Life'll keep going, and i'll keep my chin up. These last couple days have been some of the best I've had since I got hppd...not symptom wise, but they've been good. Knock on wood. Thanks a lot.

Also, i've heard good things about cognitive behavioral therapy before, and took some steps to get that ball rolling today since it's been in the back of my mind since this all started. I'll let you know what I think of it if you like, after I get in a few sessions with this therapist.

I've been avoiding cannabis and especially psychedelics, to be honest the thought of psychedelics somewhat irks me nowadays anyway.

Thanks again for the replies.

Tossin' in that I like this idea, too, even though I don't know anyone that well yet

Actually a lot of your symptoms sound like mine except things used to move for me, walls breathed etc. Which have died down to only kind of bouncing sometimes when I walk, things look I been having trouble with things looking tilted recently, and I have ghosting, pretty Damn badly. Anyway, the staticy esqe vision is just how you describe it, Image burn gets bad sometimes. Starburst are huge.

But what interests me is the problems with memory, because I kinda have it too. I feel as though my memories are flat, they are there but flat as hell. It is almost like someone told me my experiences described how I felt but I cannot grasp them like normal people. For a long time I thought this was some form of memory loss, but I doesn't seem like I am any worse at remembering things as I used too. No, everything I have done just seems like it is behind this dense fog, my body is running detached from my mind, like I am just some observer to my actions. This is DP/DR I think, is this what you are describing.

Good work with getting off drugs, I have not been so lucky still smoke once every month or two. Had a cigarette yesterday, which effects me worse than weed, makes the next morning feel like shit and my visuals increase. I just feel that the first step of recovery is feeling normal again so you can kinda learn to block out the visuals. This doesn't mean go on drug binges but I think there is some good to giving yourself the occational treat, keeps the why am I so different than everyone else feeling away. The anxiety is the real cuprit behind this disorder you must starve it out.

Dude, you hit the nail square on the head with that one. That's exactly what my memory is like now. I thought the same thing, actually, some sort of memory loss, until I realized I still remember things just fine as weird as that sounds. But they're flat, that's a great way to describe it. I think it's DP/DR, because there have been brief periods of time where I felt perfectly normal, 100% gone with that feeling and my memory seemed clearer, but it never last long and I can only think of a couple times it's been that good since i've had hppd.

Also, now that you mention it, I suppose i'm not off my daily does of nicotine yet myself, that and caffeine, which doesn't help.

edit: double post sorry

Your coping mechanism will get much better... you have already made the right decisions about helping yourself by cutting out the drugs and beer, I imagine you will see more and more improvements as time passes, do you exercise also, that would help?

The 1st year is a real bitch, no getting away from it... my advice is to force yourself into situations that your condition makes you uncomfortable with.... the more you do it, the more it returns to some kind of normality. For instance, I had a very tough time looking people in the eyes when I first got hppd... but I forced myself to get back into the routine and now it is fine.

This part might be bad advice, but it helped me.... treat yourself to a few beers every now and again... I can have 5-6 bottles and wake up feeling fine... if I go over the top and have too much, i'll drop a klonopin the next day. I just find that having a relaxing beer with friends and having a good laugh is worth any anxiety the next day.

Just to give you a bit of insight into how life goes on... I got this in 1995 and have since got through university, started my own business, got married, traveled all over the world and have lived in a foreign country for the last 8 years, learning the language and experiencing a new culture.... something I had planned way before hppd. Life gets better but you have to fight even harder for your dreams.

Good luck, Jay

Thanks for the reply Jay, I appreciate it a lot. I'm going to keep getting myself out there no matter how much anxiety and distress I am feeling. Also, I don't believe that to be bad advice, a beer with my buddies now and again is therapeutic in it's own right, so long as it's just one or two and I don't over do it. I love hearing about anyone with hppd who goes on to live a great life, it's always inspiring to me.

Also, exercise does help. I've always been an avid skateboarder, or any sport with a board really, skating has always been there for me and I love it. She's a cruel mistress though; currently have a fractured wrist i can't even move and my legs are all kinds of bruised and torn up. Thank goodness I can still shred with hppd.

Right now, it looks like I will be moving back into my parents house (as previously stated, I lost my job the other day), and I filled out paperwork/financial aid to get back into college next fall, so in the meantime i'm going to relax this summer and get my head on straight. If anyone on this community would like to chat, get at me, and thanks again.

I have no form of support in real life for this, as I have not told anyone, so I still am hoping to find some support with this community. I've had hppd since november of last year. Today I got fired due to my performance lacking. I've given up all drugs, weed, alcohol except a beer very rarely. I've been mostly sober for 5 or 6 months now. I'm depressed now. I walk around utterly dazed and confused, I don't ever know who I am. My memory is getting slightly better, but it's still terrible. Please tell me I can pull through this. Not a cry for help, but a lot of the time I think I'd just rather be dead because a normal and fulfilling life seems impossible. I can't deal right now. My friends find it strange I don't smoke or ever drink a beer with them.

I'll describe my visual symptoms. They're a pain in the ass, but the visual aspect of all of this is the least of my worries.

Black squiggly specks all over vision at times. not unlike floaters, but not floaters.

Gnarly image burn quite frequently from almost everything. This one drives me crazy.

Trails. Night comes along and I notice the trails behind every moving object.

Surprisingly, closed eye visuals are at about zero, and have decreased significantly.

Slight static-visual-snow, especially at night.

starburst off of bright lights such as car headlights.

All i can think of right now.

I seriously just need to hear that I will be able to live with this. If i could just remember who I am, and be able to use my brain/stop walking around in autopilot/awkward/watching myself mode. I didn't even do that many drugs. I was a normal guy, and I'm paying big time for the stupid decisions I made.

It's damn hard watching everyone I know live their lives. I just wish I could live mine.

Just wanted to tune in and say I really dig it man, very nice.

Can we get a thread with some tips about how to handle this when you feel it coming/are experiencing this?

For me it's also companied my severe anxiety. I take a few deep diaphragm breaths, and focus on my sense of feeling, such as rub my hands on the fabric inside my pockets, or my feet on the ground and let myself know i'm there, and that's fine. If that makes any sense. I feel like i'm getting better at living with hppd, but this derealization can get to me.

I just went and watched these videos thanks to this thread, and found them very inspiring and helpful. Reminds me of myself a lot and what i'm going through, what I assume a lot of us here are going through.

Hello all, nice to meet you. Thought i'd introduce myself.

So I've been living with hppd for a while now, the onset was from a dose in November of last year. I have since been completely sober albeit excessive caffeine and nicotine. The first couple months were a living hell, and i didn't even realize what was going on. I thought it could be depression, anxiety, or a mix of many other things. Then i figured it out, which made things even worse as I realized my hopes and dreams are now that much harder to achieve, my mental health is much more fragile, and i was just generally stressed out and depressed with anxiety about this whole thing.

BTW, all the usual symptoms i've seen described here, i'd love to talk to people about it if interested. Anyway it's slowly getting better as I accept this is life now, I just wish i could get rid of this brain fog that hits me every morning and a good chunk of each day. I have mental clearity, if you will, everyday, but then every morning it's back to absolute braindud-fog for many hours, perhaps until the eveing. Could use advice on this. It's been incredibly helpful, perhaps even life saving finding this community and doing my share of lurking around before posting this. Seeing those of you who are living fulfilling lives even with hppd has given me the hope i needed.

I have good days and bad days, but I think i'm slowing noticing improvement (6 months with hppd)

TL;DR Coming to terms here, some advice or just someone in the same boat to talk to seems awesome, and nice to make all your acquaintance.

Never give up, never surrender.