robbie123

Update- stopped taking the naltrexone 25m just before christmas because i new i would be drinking on and off right through until about the 3rd jan and i didnt want to be drinking on any meds-so i started again last night 25m- mild hot and cold flushes nothing of concern and a huge increase in cevs (closed eye visuals) coming from the minds eye which also increased brain fog and that strange feeling like pressure behind eyes and definate increase in temporal lobe activity and a touch of insomnia the whole night, no significant increase in afterimage static or outward visuals- but this med is affecting hppd in the closed eye state and seems to be aggrevating the minds eye if you know what i mean- will carry on at 25m for a while . cheers robbie

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

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

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