robbie123

Hi im dropping down to 12.5 mgs and sitting there for a few weeks - been pretty tired with initial onset -feeling more awake today more energy which is the worst symptom of my hppd - no noticable change in visuals yet -not that its a concern either way - if anybodys interested google low dose naltrexone forums( ldn forums ) many many stories of huge succses within the ms fybromilgia and lupus community 4.5mgs seems to be the recommended dose within these ailments.

Reading between the lines of the above ailments their does seem to be a thread connected with hppd atleast the physical symptoms ( fatique brainfog muscle aches) etc so some room for optimisim but only a glimmer at the moment -will keep you updated .

cheers robbie

Hi joe ive had hppd for 33 years wouldnt say dp/dr are a major problem although i do get mild bouts- maybe some in the early years but it dissipates over the years naturally. not really noticing anything yet with the naltrexone maybe slightly increased visuals and some cold sweats and a little insomnia - 3rd day at 25mls .

cheers robbie

Just thought I'd give a quick update. My DP/DR is practically gone. 80% reduction I guess? My cognition is still improving so good there. I don't notice visual symptoms during the day so much but when I'm in dark rooms I can still see the HPPD. Only thing I really notice during the day is brightness off of street and car lights I guess or at least that's what comes to mind but it doesn't bother me as much at least with DP not so much in the picture and it's a little less bright, definitely not brighter like taking an SRRI in my experience. Over focus on certain objects like someone was pointing out on here has decreased. I always use the example of a cigarette cherry and being able to see every little detail overly. That seems to have decreased. When I look at my hand during the day is doesn't look like it's tripping if you know what I mean. Trails too have decreased but right now that seems more up and down, sometimes better, sometimes worse. I still notice the HPPD in darker rooms but things don't sound so spaced out and distorted if you know what I mean. There's a lot less noise in my head too which is really cool, like everything has really calmed down, a lot more than ever taking antipsych's in my experience at least. I haven't been going on these worry binges either so to speak either where I almost couldn't stop myself and thoughts. I think people can tell around me too that I sound more organized when I talk to them and that I'm not all over the place and just more centered and calm in myself, I feel more calm in myself. Afterimages are down a little bit too but what's weird and like I've said earlier in this post, I notice them more at night or in darker rooms like the underlying visual disturbance/processing is just more apparent in that state. Once a doctor told me that was because my pupil is bigger in darker rooms so your trying to pull in more but who knows, I doubt he really knew what he was dealing with but it kind of makes sense. I feel more connected overall, so far, so good. Want to know anything else, just let me know.

joe

hi joe thanks for the update ive just started naltrexone today 25mg to start with so in keen to hear your progress .cheers robbie

Definitely need this imo. Medications or just tips about lifestyle, rather both unless medication is a tricky one since it can go wrong if people get too encourage to self-medicate.

Maybe such subjects must be granted case-by-case in order to get posted.

Hi merkan can you give the board an update on how you are doing with your keppra experience

cheers robbie

Thanks for the reply shaolin and david thats great news that both of you can help and just what i need, As you probably know i have had hppd for over 30 years and managed to work my way through the symptoms to the point i dosent really affect me anymore,so i have fair idea of the symptoms of hppd,But it would be wrong to formulate a diagnostic tool based on my own experience and symptoms so help from the board is crucial furthermore to work within the uk health service as probably the first councillor specialising in hppd i will need to have a widely accepted view on diagnosis and treatment within this field.

many thanks robbie

Hi its good to be back - just wanted to ask for your views -I have just been accepted by a local goverment body to study as an alcohol and drug abuse councilor the course is fully funded and is a 2 year diploma which leads to a full-time employement with goverment initatives- i have also been given the ok to train as a councillor in hppd within the remit and specialise in that area within private and local health practise when the course is completed, my goal in specializing in that area is to help pick up hppd as a condition,rather than let drug induced phycocis be the main tag,and help where i can. my aim will be to formulate a proper diagnostic tool within the hppd remit and nail down the real symptoms as a proper working guide so accurate advice can be given.I have studied exstensivly the litrature online in connection with diagnosis and as you all probably know a fair proportion of it is based on fiction rather than fact,my main aim firstly is to get a concensus from the board on what are the main symptoms 1-10 1 being the worst and so on. i feel that we are the experts on this condition and we have to set the criteria for diagnosis. any feed back would be welcolme.

cheers robbie