Matt

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Matt last won the day on June 6 2015

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  1. Figure I'm about do for an update.. I'm still on Keppra (500mg twice daily) and take Klonopin more often than I'd like (.75mg /day). The visual aspects are more than manageable, but it's the DP that gets the better of me sometimes. If I take the Klonopin, life is good. No idea if the Keppra is doing anything, had some noticeable effects in the beginning but could've been placebo. No negative side effects, so I'm plan on continuing with it for the time being. Totally cut out smoking weed and don't seem to notice any long term difference (when I did smoke, I was fine while stoned but DP symptoms definitely flared the day after), still figure it's not worth it and just stopped altogether. Trying to work on my alcohol consumption - I'm not a heavy drinker, but do probably average 12 drinks a week. Would like to stop for a while and see if this has any long term effect (plus yes, I know it's not good with Klonopin). Other than that, not too much to report. I eat healthy and exercise regularly, get plenty of sun, moved in with a girl I've been dating for 1 1/2 years, teach music 5 days a week, read, drink tea, just trying to live healthy and go day to day with this shit. Almost 6 years and things have gotten a little better. Here's my generic "life list"... in addition I plan to taper down on the Klonopin after the holidays (but man, it does make life bearable). Don't drink coffee Don't smoke weed Drink less alcohol Exercise more Eat Healthier Meditate Read Write Practice Record Be a good boyfriend Spend less money Make more money Take up watercolor painting Improve culinary skills Spend less time on social media Wear sunscreen Wear earplugs Anybody out there have any new years resolutions they'd like to share?
  2. Final Update: Not too much of a difference from last post, but figured I'd do one more since there are some slight changes in dosages. Keppra: Didn't notice a significant difference in switching from 1500mg to 2000mg, besides slightly more drowsy. So, recently dropped back down to 1500mg a day (500mg in the morning and 1000mg at night). Been on Keppra now for almost 6 months and would say I notice a 30% reduction in symptoms - mainly Brain Fog, Anxiety and DP/DR (don't notice visuals as much either and when I do, could really care less). Klonopin: Have been taking as needed like I did with Xanax the previous 3 years, and will continue to do so. On average, this comes out to about 7 .5mg pills 3x a week but obsiously varies depending on my activities for the week. Calculated this because I go through 30 a month and really try to limit to 3x a week. May have a 5 day period (because of work, travel, etc.) where I take 2 .5mg pills a day, but won't take any the following week (notice some rebound anxiety and increased DP/DR at about day 3, but nothing worse than what I experienced when I first noticed symptoms of HPPD, before I started any medication). On days where I take Klonopin, I notice a 70%-100% reduction in symptoms. Other: Completely stopped smoking weed (been a month now) and can say it's for the better. I excerices regularly (mostly surfing, walking long distances, and occasinal backpacking trips) and this always makes me feel better. I eat pretty healthy (pescetarian diet - lots of fish, vegetables, tofu, etc. and almost no junk food). Plan on getting back into mediation, as I remember it greatly improving my quality of mind when I did so heavily 10 years ago. Also, I still like drinking but try to limit to 3x a week (not a heavy drinker, may have 2-3 at a time, unless I'm at a party in which case I may have 5 or so) Conclusion: I've found the combo of meds that works for me and feel pretty normal on a day to day basis, so plan on continuing this long-term. I'm completely open with my neurologist and he's extremley supportive (although he thinks I should take Klonopin everyday). The other stuff is pretty obvious and you see it all over these boards (stop all pyschoactive drugs including weed, eat healthy, exercise, meditate, play music, read, socialize, keep yourself occupied with healthy activity!) Once again, cheers and good luck!!
  3. Hey guys. Just another update since I've been on 1000mg x2 day for a month now. Really no negative side effects, except for maybe slightly more drowsy than I've always been. I pay $40 for a month and a half supply (without insurance), so don't plan on stopping. On average I'd say I have about a 35% reduction in symptoms of Brain Fog, Anxiety, and DP/DR - this varies day to day though and some days I feel completley normal. The days when I feel really shitty are few and far between. Haven't experienced a panic attack in months, when before it was a few times per month. Thinking and focus is definitley more clear and overall, I just feel more comfotable in my own body. Also, I take Klonopin 3x a week (anywhere between .5-1.5mg, depending on the situation(s) of the day). On these days I would say I'm 70% back to my normal self. Also worth mentioning I drink a few times a week (usually 3-4 drinks) and still smoke weed on occasion (maybe 2-3 times a month). As for visuals, they're still there if I look for them but not bothersome. As I've told many of my friends, I feel like I'm coming out of a 4 year personal hell. That's all. In anything changes I'll be sure to let you know. Cheers, good luck, and try Keppra if you can!!
  4. I was just open and honest about everything with him - showed him "the" keppra / hppd study and he was willing to let me try. Just bumped dose up to 1000mg x2 a day starting today. Will continue with updates!
  5. Update: Been on Keppra for roughly 2.5 months. First 7 weeks - 250mg x2 a day (didn't really notice any difference) 2 weeks - upped to 500mg x2 a day Past week - upped to 750mg x2 a day All I can say for sure is I've been having way more good days than shitty! Brain Fog - This seems to be the symptom that's improving the most. Varies day to day but overall, I'd say about a 50% reduction as of now. Focus is sharper, my speech has improved, clearer thinking, etc... Panic / Anxiety - About 30% reduction as of now. No benzos today and was pretty fine acting like a normal human in social situations. DPDR / Visuals - Doesn't seem to have too much of an effect on either, but with Brain Fog and Anxiety reduction neither really bother me. Side Effects - Mild drowsiniess any irratibility. Seems to be getting better though and was never that bad to begin with. Will definitely not be giving up on this medication any time soon.
  6. Not sure about that, but will probably decrease your caring about the snow for a little while.
  7. Always appreciate the responses guys! Was feeling very guilty last week after a weekend of partying. Smoked no weed in the past week, took benzos 3x (but never at the same time as alcohol), and had a few beers over the weekend. Anyway, small steps! Trying out klonopin as opposed to xanax on days where I typically need it, in hopes of getting through the day on a single .5mg dose. Also increased Keppra dosage. Been feeling good these past few days and hope the trend continues!
  8. Just an update on my Keppra treatment... Been on 250mg x2 daily for 2 months and can't say I feel too different. Saw my neuro again and we upped it to 500mg x2 daily for these next two weeks and then he wants me to up it again to 1000mg x2 daily in another 2 weeks. I may actually stick with the 500mg x2 daily dose for 2 months or so before increasing (mainly for cost reasons). Also, got perscribed klonopin which I'm happy about. Have been on xanax for almost 4 years, and on days where I do use it (about 3x a week) I find myself taking it twice througout the day, since it's effects only seem to last about 4 hours for me. Even if klonopin isn't as strong, I'm excited that I can maybe get through an entire day with only taking a single .5mg dose. I know medication can't be relied on soley for recovery, but crossing my fingers my DP/DR and brain fog reduces by 50% or so as other members here have described. These are by far my worst symptoms.
  9. Fair enough. Thanks for your reply.
  10. Okay, here's a typical scenario... I take 1 or 2 .5mg xanax before playing a show or at work earlier in the day, then have a few drinks and feel really good, then have even more drinks, then end up smoking a bunch of weed (which is usally always around), and end up saying/doing shit I end up regretting in the morning... I ended up doing this exact thing the past 3 nights. I really want to cut out weed for good. I've been dealing with HPPD for 4 years now and did do a 7 month stint of not smoking in the beginning but can't say I felt any better at the time so have been doing it occasionally since (always when I'm drunk about 1-2 times a week). It's a direct correlation between getting drunk and smoking weed so I really need to cut back on my drinking. Posting this here because I keep telling myself I'm going to cut out weed and cut back on booze, but I never do. Maybe having it in writing on here will give me more incentive? Ideal scenario would be to limit myself to 3 drinks, 3 times a week. It's usually when I go over that where shit kind of goes down hill. Like I said, I'm also on Xanax which I would hope to cut out someday (currently take 1 or 2 .5mg 3-4 times a week, but would ideally like to limit myself to 3 times a week for that). I'm also on Keppra 250mg x2 a day. Thanks guys.
  11. There's a few people on here who've had some success with Keppra. I just started a few weeks ago and as of now, can't say I notice much of a difference. Although, I'm on a pretty low dose (250mg x2 a day). I plan on upping the dose and giving it about 6 months before deciding if it's worth continuing. I haven't read any reports of people getting off of it having their symptons stay reduced, so I'm pretty sure you have to continue. And if you do discontinue, you should ween yourself off. This shit is expensive though! If I don't notice at least a 30% reduction in symptoms 6 months from now, I'll probably discontinue use.
  12. Sobriety (especially all pychoactives), is key if you're interested in getting better! I too see purple streaks of light (mostly at night while driving) and faces in tree bark. Weird, I'm not sure I've seen anybody else mention those things on here...
  13. Thanks for the responses. I'll probably stick with the doctor's recommend dose for now and wait until my next appointment before increasing. Are you guys both long-term hppd'ers?
  14. I've been taking Keppra now for one week, 250mg twice a day. Can't really say I notice any difference. I know it's a really low dose, but can anyone out there provide a timeline for it's effectiveness? I don't have another nereuologist appointment until a month from now, but was thinking of increasing my dose by another 250mg/day if I still don't feel anything by next week. Oh, and as Shadowplay mentioned (maybe because of the low dose), a few drinks even with a low dose benzo didn't feel any different than usual. Not giving up hope for this drug yet!! Not excepecting a miracle cure, but a small reduction in anxiety / DP/DR / brain fog would be awesome!!!!
  15. Going on 4 years. No real improvements, except for the fact that I've kind of gotten used to all the visual distortions, brain fog, anxiety, DP/DR, etc. Just got perscribed Keppra and hoping to see even just a minor reduction in symtoms!