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.
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:
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!
I saw dr Abraham yesterday and his visit was both a positive and negative experience. He told me it was likely that my HPPD would go away. He also said that my case was fairly serious. I have about 8 different symptoms that I described to him. However each symptom is fairly mild and I can go hours sometimes without noticing anything out of the ordinary. I got kind of depressed hearing that my case was "serious" how many symptoms do you guys have and to some extent how severe are they? Id love to compare symptoms since I was always convinced I had fairly mild HPPD and was fairly distressed to here it was "serious" and that he'd dealt with much milder cases. Thanks for any replies
I'm seeing Dr.Abraham this Saturday and want to collect as much info as I can prior. Has anyone found that benzos do nothing for their visuals? They reduce my anxiety obviously but don't reduce my visuals, no matter the dosage it seems. If anyone has any experience with this their input would be appreciated. Especially if they found something else that worked for them. Thinking or trying sinimet.