Sammywalker2009

It takes an hour on the train if I were to drive to London with no traffic could get there in 30 mins I usually drive to a nearby station and get the train in from there I live in Kent man do you live near London ?

I see visual snow when I close my eyes and if I close my eyes and look at the sun I see major geometric patterns flashing and fading it's weird but at night I hardly notice them

I can get the train and London does look like the better option for professionals with some more of an idea about this condition I mean there's a few docs there who are aware of visual snow If I do go down the London route it will have to be after Xmas as I'm due to have my operation within the next couple of weeks and will be recovering from that for a while public transport wouldn't be an option for a while it sucks hence why I was curious about seeing a doc closer in hope they might just prescribe me what I want and save me the irritation of going to London lol

Yeah well it's been over a year and I'd say I'm at that 65% but looking to get some meds to speed up the process I'm a strong believer in the power of positive thought it's clinically proven the placebo effect can have good effects if think you'll never recover you won't it's the self fulfilling prophecy positivity all the way man lol

Mg have you had any email corresponadence with that professor I think doctors in London are going to be more likely to be aware of this condition for me ATM with my stomach trouble my cars broke London would prove a nightmare to get to

I try to look at it in that way I do not regret the experience or doing it what I'd regret more is giving up and not doing what is needed to beat it I know if and when I beat hppd it will be as good as winning the lottery I look forward to that day

Cheers dude if I got benzos I'd probably keep them for only rare use for special occasions last thing I need is some shit from another drug I'd say I can be strong willed I didn't drink for 8 months haha that took some will power I can tell ya what I really wanna try is keppra and a few other drugs I've heard may help

This site and the community gives me hope and the people here are brilliant I can't praise it enough

Yeah for me it's mainly the light sensitivity and visual snow and that causes me anxiety and slight dr but I definitely feel if I got rid of te visuals the dr would fade away completely the tinnitus though I think I may be stuck with thanks a lot for the advice though I'll probably go do that see the opthamologist with neuro exp. Hope yours works out well for you

Yeah for me it's mainly the light sensitivity and visual snow and that causes me anxiety and slight dr but I definitely feel if I got rid of te visuals the dr would fade away completely the tinnitus though I think I may be stuck with thanks a lot for the advice though I'll probably go do that see the opthamologist with neuro exp. Hope yours works out well for you

ok so I have emailed my local hospitals to save going to london for the time being then if i get nowhere locally I'll go to london and see if i can see a doctor at kings or somewhere privately as I have recently found out I have private health cover. But basically I have told to get referred to a neurologist who specialises in headaches or an opthamologist with some neurology experience I am wondering who would be the best one to go with and who might be more likely to know of visual snow and prescribe me drugs to treat it. any help advice much appreciated as always guys

I had the same trouble when I saw my gp they wouldn't prescribe me klonopin or keppra and told me they never heard of the condition and that these drugs wernt licensed to treat it which is rubbish as I later found out they can do off label prescriptions visual snow/persistent migraine aura is more of an accepted condition I emailed lots of institutions who are aware of this condition who advised me to see neuros at kings collage London this is probably the place where you are most likely to flind a doctor with some idea of this condition but there's a few places in London which specialise in migraine some of the meds they try are primarily anti-epilepsy drugs so you might have luck with getting them to prescribe keppra klonopin if you show them the study on it I'm waiting to hear back from my local hospital to see if they have anyone with any experience of visual snow otherwise I'll be going to London

Something that makes me feel better is when I see inspirational people with horrendous illnesses and diseases who make the most of their lives and have such passion for life it makes me remember things can always be worse and gives me a better outlook if they can live a happy life then so can I

Also I'd suggest thinking really positively if you can if you think you can heal there's a bigger chance you will it's been scientifically proven people who have something to get better for get better quick so look to the future also

I've also found reading to be really helpful

As Jay said exercise be healthy good diet drink plenty of fluids supplement some people find help in yoga and meditation Sex helps lol

The busier you are the more things like dr/dp have passed for me and visuals are less noticed

Good luck people been here a while and wanted to give some advice with little things that help me to any newcomers

Yeah I would never touch MDMA again in a thousand lifetimes lol

What was that supposed to be dude ?

Haha yeah I think never being able to get an erection again would be worse than living with hppd some of these meds are crazy hopefully whatever I take my body tolerates it well

Style did it have any lasting positive effects ?

Haha you just closed me

Fuck mate that sounds bad also said one of the side effects can be crossed eyes WTF did you notice any other weird side effects I'd be more worried about going cross eyed haha then again I'm quite vein lol

Yeah I wouldn't let a doctor prescribe me something I haven't read to be of some help I think it's good that sites like this can educate people so they might be able to make a more informed descision about what to take

Well fingers crossed for you Hun hopefully it all works out for the best

Yeah I've read peoples accounts where it has taken over a year r.Trudeau do you think if you stopped keppra your visuals would return or does the keppra have a lasting effect that would truly be amazing if it has cured them :-)

Hey man I read over on the visual snow forum of a few people who tried seroquel most people advised against it for a few their symptoms got worse some people it didn't effect and I think a couple of long term people it helped their symptoms but from what I read majority of peoples symptoms got worse within a few days of the drug so they stopped straight away there symptoms returned back to how they were I don't think antiphsycotics in general are very good for treating hppd as hppd isn't anything to do with psychosis plus I've heard they give real shitty sides probs best to come off them dude and try something else especially if they're making you feel crappy hopefully keppra or something might work better for you if you can get it prescribed peace !

Ah wow that's sO good I'm glad it's working wonders for you r.Trudeau hopefully when I see the neuro I'll be able to persuade him to try me out on it I'll print off the study :-D

Ive read antisphcotics in general can make it worse and read on the visual snow site seroquel made most people visual snow worse but some people it didn't effect and I think a few people who were on it long term saw benefits

Haha what is that in leymans terms for us uneducated folk lol