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Found 9 results

  1. Hi friends — My experience with HPPD started about 4 1/2 years ago, with a single dose of MDMA. For me, my symptoms are: anxiety/panic, DP/DR, visual snow, flashing solid colors, some tinnitus, and seeing movement in geometric patterns. Also: I used to always be a “crier” and someone who feels their emotions very deeply. During the first few weeks of HPPD, I cried so much, some times out of misery, some times out of gratitude to still be alive, some times because I heard some beautiful music and felt connected to it. But then after a few weeks my emotionality faded, which I assume must have been a psychological coping mechanism. I was so overwhelmed with anxiety that I had to shut down emotionally to stay sane. So no more tears or feelings of meaningful connection. I still want to feel those cry-feels so bad!. Over the next two years I got better at managing my symptoms, but saw little to no improvement in them. I was still smoking weed often (my bad) & still couldn’t really FEEL, and my anxiety was off the charts 24/7. It was absolute hell every waking day. A little over two years ago I started on 10mg Celexa, and the improvement I saw in my anxiety levels was life changing. Not gone completely, but I started feeling significantly better and my anxiety attacks became fewer and farther between. Worked my way up to 20mg, which is my current dose. A few months ago I finally found a neuro who is actually familiar with HPPD, who added Lamictal, ramping up VERY slowly (I only got up to 37.5mg/day). In the first month (2 weeks on 12.5, 2 weeks on 25) I started to notice my visual symptoms clearing up slightly and my brain feeling a bit clearer. It was actually the best I had felt since before HPPD and I was excited to continue ramping up on the lamictal, hoping it might help get me to a place where I can really feel emotions aside from anxiety again. After that first month though, things started to get unpleasant again. Bouts of anxiety attacks, some good days, some very bad. It felt like I had been consistently alright for a while, but now my worst symptoms are pushing their way back in. I also developed minor muscle twitches every few minutes, which was completely new. I was prescribed Klonopin after a particularly bad anxiety attack and now I take 0.25mg when I feel myself getting panicky. I don’t like it, but it does keep me from panic. I quit smoking weed then (a few months ago), but that hasn’t helped. My hopeful suspicion is that perhaps I’m experiencing SSRI “poop out” with my Celexa, and could therefore ideally switch SSRIs and continue with lamictal. My neuro says the only way to know that for sure is to come back off the lamictal and see how it feels to just be on the Celexa again. Back down to 25 from 37.5 lamictal and feeling a bit worse actually, but my neuro says I need to get down to zero and wait two months to see what the deal really is. I’d much rather keep my lamictal dosage as is, and try switching to a different SSRI, as that just feels more “right” to me - but she’s the professional so ... If it turns out that I’m actually not tolerating lamictal well, I am interested in looking into sinemet... it seems to have been a wonder drug for some people here, but I would be very worried about developing dyskinesia, as I work in a field where that could ruin my career. No targeted questions here really, just looking to share relevant experiences/advice with other HPPD’ers. PS: for anyone doing the ol’ downward mental spiral in these forums and feeling hopeless (like I used to), things WILL get better. I’m still having struggles but I’m not in hell like I used to be, and life is very worth living for me right now! I have my bachelors and masters degrees, a solid career at 25, wonderful friendships, and going by objective criteria, am a fully functional human being. You will be okay! Keep advocating for yourself!
  2. Hey guys, My doctor prescribed me lamictal yesterday and as pretty much all of you know, it's one of the more highly regarded medication out there for this condition. My hppd is actually very bearable, the only time I struggle is when I'm alone in the house where the lsd trip happened, which leads me to a few questions. If I decide to take it, and my hppd gets better/worse/stays the same, if I stop taking it will I return to baseline? Has anyone else taken this med?
  3. Hello! I've been on klonopin for 6 months now. It helps with frame rate problems in high doses (over 4mg/day) but i have never wanted to go so high. It also have helped me greatly with the visual snow and basicly reduced all my visual problems. But in November i started to devolop tolerance so i have quit the klonopin after 6 months on 2mg/daily. So now i'm on Lamictal 450mg/day that greatly reduces my visual snow,BFEP and negative afterimages. I will increase my dose soon and see if more positive things happends. But i still have much problems with frame rate problems, positive afterimages and tracers. So now i'm thinking of adding medications to my Lamictal such as Sinemet and Tegretol. I've heard good things about Sinemet when it comes to positive afterimages, tracers and also that it makes the vision much smoother. I've heard some good things about Tegretol too. Somebody that have tried this medications and had good results? I would verry much apreciate some help regarding this because it's a big problem for me. Thanks
  4. Has anyone tried it? I looked through the forums and couldn't find much. I've been taking lamictal and it has eliminated the majority of my symptoms, but there is still some residual anxiety and I'm thinking about trying a low dose of lithium (~300 mg a day) to tackle it. Hope everyone is one is doing well!
  5. So given that agomelatine doesn't seem to have done much of anything it's very likely I'll be prescribed Lamictal next Tuesday. When I mentioned levetiracetam the psychiatrist I'm seeing either didn't have much to say about it or didn't want to go there for some reason, but he praised Lamictal and said it'd be the next move in my treatment. Thing is, I know Keppra tends to be the most well-regarded anticonvulsant by members here and seems to have the most success stories, but I'm not sure if that's just because more people have tried it. I'm not well-versed in the pharmacological actions of either and how they differ but a lot of studies/reports seem to regard them as relatively comparable as far as treatment of epilepsy goes. I know there's the study, but is there any reason Keppra was chosen for the study over Lamictal, and were the same study to be done with Lamictal is there much reason to believe the results would be less positive? I really just want to know if there's any concrete reason that I might want to really push for Keppra over Lamictal; I don't especially want to get into an argument about this stuff with a professor of psychiatry unless I'm confident there's a solid basis for doing so Oh, and while I'm at it I'd like to ask: if one's HPPD fails to respond to treatment with one anticonvulsant, is that reason to believe it won't respond to another and that avenue of treatment should be abandoned?
  6. I've been on the cloneazepam for about 1.75 months and the lamotrigine for about 3 weeks, increasing dosage by 25mg each week until a target dose of 175mg-200mg is achieved (started at 25mg so I'm at 75mg daily right now), after which treatment is to continue for at least 12 months. Here is a short report of what has been going on so far in terms of symptoms: Improvements: Anxiety/panic is almost non-existent (as expected with the clonazepam). I'm also much more social, and to be honest, I seem to be more bold, especially with regards to the opposite sex, you know flirting and whatnot (even went on a pseudo-date with a coworker whom I'm sort of pursuing as a romantic interest ) even though I'm not the most attractive fish in the sea. Social interactions no longer scare the living shit out of me. Eye strain used to severely increase symptoms, to the point of almost being blind after sitting at my computer for a few hours. Eye strain now, while it still increases symptoms, does not worsen symptoms as severely as it did. Ghosting/double-images are reduced in intensity and seem to be only concentrated around brightly lit or colored things now (gets worse when it's really sunny out). Also it seems I have to focus on something in order to get ghosting. Can also read text on a computer screen much more easily now. Depression. Significant improvements here, while I'm still fairly depressed, I'm nowhere near where I was about 2 months ago (constantly suicidal, self harming, engaging in purposefully risky behavior, etc.) Brain fog/confusion/cognitive impairment/concentration problems. Again, much improvement here. I can think much more clearly now and no longer get frustrated when presented with a hard problem. I'm also currently participating in a research internship and am able to understand the rather abstract and hard to grasp concepts fairly easily (coworkers not so much ) Somewhat related to the depression, but I have a much more positive outlook on things now and am more optimistic and accepting about my mental/neurological disorders, of which there are 4. Symptoms lacking improvement: Image trailing. Trailing is still constant and at the same level as it was when this all started. Oscillopsia/breathing objects. I still get visual jittering (things look like they're buzzing or otherwise moving) and when there are areas of high contrast gradients/edges (light to dark/dark to light), I still get severe breathing phenomena. Palinopsia/after-images. Still get both negative and positive after-images that last about the same time as before (a few seconds to a few minutes depending on image intensity). Light beaming/beams/star-bursting. Still get long beams of light that emanate from light sources and still get starbursting around highly concentrated points of light (headlights, streetlamps, LEDs, etc.) Visual snow. Same as before. Scotomas/auras. I still get the odd scotoma/aura every one in awhile, usually at random times and usually in the form of shapeless, colorless blobs. Ghosting/double images. While there has been some improvement, it is still not to the level I would like it to be Depersonalization/derealization. While the grounding/coping techniques my psychologist taught me (and ones I came up with by myself like breath holding and cognitive interaction with my environment) help to ease and stop an attack, I still get episodes of DP/DR. ​Negative side effects: Fatigue, though this is expected with the combo of lamotrigine and clonazepam. Drowsiness and oversleeping. I have, on more than one occasion since starting this course of treatment, overslept by a large margin and either ended missing class or being late to work. Some sexual dysfunction. It's kind of difficult for me to keep and get a you know what for you know what purpose (a man has needs ). Also difficult to *ahem* sow my seed in a timely manner. Decrease in motivation to do things. While I've always been kind of a lazy person, the fatigue and drowsiness from the meds just make me want to sit down and chillout for a few hours listening to some quality tunes. Sort of a stoned, couch lock feeling. Increased appetite, though this isn't that much of a bad thing. Also, question for those who have taken this combo, is having a beer or two here and there while on these meds harmful? I do know these meds when used with alcohol increase drowsiness and decrease tolerance to alcohol, but so far I've found that small amounts of alcohol, like a light beer, don't do much. The only sort of scary experience I had was when I stupidly drank a few shots worth of high quality bourbon in a homemade cocktail. Woke up naked on top of a pile of clothes in my laundry room and not having a clue where the hell I was or how I got there. I plan to continue treatment with the lamotrigine for the recommended time of 12 months. I know it seems long, but I think it will be the key to being rid of this disease. I would also suggest lamotrigine for the people of this board. It will take awhile for it to have any sort of significant improvements on symptoms, about 6-12 months at least. The improvements I described are minor, but nonetheless hopeful for me as they tell me the medication is working and having a positive effect. I do plan on tapering off the clonazepam though as I would rather not have to deal with benzo WD on top of all this. Anyways, that's my report so far and I'll probably post another report at the end of the summer since I should be at the full 175-200mg dose of lamotrigine by then. If you have any questions, feel free to ask!
  7. I believe there are others on this forum suffering from bipolar disorder also... I am wondering if any of you have noticed changes in your hppd symptoms during depressive and manic episodes? I was on Lamictal for about a year and it helped with both, but at the beginning of this summer I quitted cold after forgetting to take it for several days and thinking I was still feeling ok. The hppd symptoms came back after a while, but they didn't bother me much so I somehow delayed taking my meds until today.... I guess lately I've been going through my first hypomanic episode since I got hppd, and during this time it seems like my hppd symptoms got better. Which scares me, because I've been impulsively doing drugs again... (When I'm depressed, I don't do any drugs because even before hppd, everything I did led to panic attacks) I actually feel quite ok, It feels nice to be able to do drugs and have fun again... I sometimes think that maybe it's just me being paranoid, maybe I'm actually cured... But I recognized this pattern a few days ago, after my second lsd trip this month. The last time I was feeling and acting this way, I ended up having HPPD. I'm scared of what could happen after this illusion of feeling good is gone. I started taking Lamictal again today, I hope that it will help the way it did before... I would like to hear about your experiences... Also, I know that same neurotransmitters are affecting both conditions in some way, but I don't understand the mechanisms that much and would like to learn about it more. Any reading suggestions?
  8. Hi there! For the past two years, I have been having difficulties with video projectors, and sometimes leds. When I watched anything on a projector, the image seperated into red-green-blue trails. Usually a great sense of terror and panic attacks accompanied the visual disturbance. It was awful for me, because as an art student I am exposed to projectors constantly, and I had to give up on many of my classes because of it. It all started about a month after a very bad psilocybin experience. (I guess I haven't been exposed to any projectors in between) At the time I also experienced constant sleep paralysis, disturbing lucid dreams which started over and over when I tried to wake up... When I mentioned this to my psychiatrist, he didn't seem to care and prescribed me antidepressants and antipsychotics for my depression and general anxiety (first prozac and rexapin, then cymbalta and seroquel). I started seeing another pdoc, and it was the same with him. I told my parents about my problem (not the psilocybin experience though) and a neurologist who is a family friend suggested that I get screened for epilepsy. I went to an epilepsy expert. She wanted EEGs and MRIs which came out clear. I told about my drug use, and gave her a list of drugs I have tried over the years. She said that it must be a result of my drug use, but offered nothing to help. About 6 months ago I started seeing another pdoc. She said that some minor epileptic cases may not be diagnosed by EEGs, and prescribed me a low dose Lamictal. The main reason for Lamictal was that it acted as a mood stabilizer, but she also wanted to see if it helped with these symptoms. I started with 25 mg, around 75 mgs the visual disturbances vanished (now I'm using 200mgs but that's for the mood stabilizing effects). Well, altough I mentioned my drug use none of these doctors mentioned anything about HPPD, I guess they just don't know about it. I just found out about it myself, and after reading some articles and the posts on this forum, it seems a lot more relevant to me than photosensitive epilepsy. Still, it was treated by the instincts of my pdoc I guess I'll talk more about this with her next time we meet. What I'm curious about is, is this thing curable? Or will it return if I stop using Lamictal?
  9. Yeah, saw the psych today and got the all-hallowed script. I'm tentatively hopeful. Just a few things I'd like some insight on, if anyone can help. As far as doing a fair trial, what should I omit from my current supplement regime? It seems harmless to stick with my fish oil, multivitamin, B-complex, vitamin D3, and creatine. I've been taking ~4g of magnesium BID (morning and night), and given that the intention of that isn't purely dietary it seems logical to cut it out whilst figuring out if Lamictal suits. I'm fresh out of NAC which is probably timely as having something else affecting glutamate could potentially skew the results. If it looks like Lamictal's gonna be a long-term thing I'll probably add it back though as the "glutamate management" of NAC sounds as though it's likely to be somewhat synergistic with Lamictal's glutamate inhibition, from what I've read - there are certainly a lot of people on Lamictal who also supplement NAC on their psych's advice. I received some damiana, passiflora and skullcap by mail today and couldn't help myself - I'm vaping a mixture of damiana and passiflora right now, haha. I wasn't expecting anything this noticeable! A definite, slight warmth in my head and an overall "chilled out" feeling, with little-to-none of the distractability/poor articulation/trippiness of weed. Pretty pleasant. Is it advisable that I otherwise abstain from them while trialling Lamictal? Tapering up to even the minimum effective dose is going to take a month and it'd be nice to be able to chill out between now and then a bit, but if those wiser than me think it's not a risk worth taking I'll endure! He was really cool and semi-fudged the script so that I'm not technically taking it off-label and so can get the government-subsidised discount on it. Additionally he prescribed me 50mg despite recommending I start off at 25mg for further bang-for-my-buck, haha. Thing is, the bloody pharmacist didn't ask me if I wanted regular pills or chewable ones, and it was only after I cracked the packet open that I realised I'd wound up with the latter, which are impossible to split in half without them crumbling everywhere. I'm tempted to be cheeky and just start at 50, and if the dreaded rash begins to show I'll move back to 25. There are a bunch of reports online of people starting at 50 with no or little issue and my general impatience is making the idea very tempting. Recommendations? Finally, just a couple things I want to know in the event that I do wind up taking this for an extended period. If its effects are mild at best and I want to give keppra a shot, would it be better to taper fully off lamictal then try keppra on its own or would it be okay to start keppra whilst on lamictal? I know it's a cross-that-bridge-when-you-come-to-it situation but I can't help but speculate! Also, in response to the buzz surrounding procholinergics that coluracetam and Odisa's enthusiasm has generated, I tried choline/ALCAR/inositol a couple of times last week and the effect was definitely positive, if subtle. Is there any reason I wouldn't be able to add these on top of Lamictal down the track that anyone's aware of? How about coluracetam? I'll look into this stuff myself tomorrow but figured it was worth dipping into the collective consciousness, haha. Thanks for any responses and I hope all is well!
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