I finally saw Dr Plant at KCH (specialist in ophthalmology and neurology) in London yesterday. What he said to me surprised and kind of confused me, and as the appointment cost a lot (first time using private), I thought I'd share online with you guys so you don't have to cough up.
He started by writing down my symptoms - visual snow, floaters, after images, constant low level migraine, tinnitus, anxiety, brain fog. Then I did a peripheral field of vision test. When I got the results for that (all normal, though I felt that the swooshing colours and snow that I got in the dark room had really damaged my score before he told me the result, interestingly enough) he told me what he knew about the condition.
He said that he's seen hundreds of people with these symptoms, some who call it HPPD, some who consider it a migraine disorder (apparently there is a whole online community of these people - wish I could remember what he said the disorder was called), linked with the 'aura' that some people with migraines get, and some who have neither migraine problems, or have come into contact with psychedelic drugs.
He said the most common group of people that he sees for this condition is people who just have moved out to college or university, and are living alone for the first time in their lives, studying a lot etc. As I developed my HPPD in early 2014, half way through my dark and depressing first year of university, this definitely resonates with me.
With regards to treatment, he basically said that I have to take a holistic approach - treat my whole body right, put on some weight (I'm underweight), wake up early, go to the gym, make sure that I am living a healthy and active life. This will give me the platform upon which I can recover - by relaxing into the condition, accepting it and freeing myself of the anxiety and stress that it causes me. He poo-pooed the use of "those epilepsy drugs" by which I think he meant Keppra, and also advised that I steer clear of benzodiazepines. He said that many people who have the condition make a full recovery this way, while also ceding that some don't, and that some recover and then, years later, pick it up again (which sounds absolutely awful)
I have strictly regimented my diet and lifestyle so that I do not consume any ethyl alcohol at all, even in cosmetics or food products (vinegar for example) in a desperate attempt to halt the progression of my HPPD - alcohol is as harmful as drugs like weed or MDMA to me in terms of exacerbating my condition. He said that this was unnecessary and that my "obsessive" behaviour was impeding my recovery, which left me confused as to his stance on drugs and alcohol - when I said that I felt I'd found some slowing in the progression of my HPPD as a result of this new lifestyle, he claimed it was a placebo effect.
All in all I'm very confused about this. I think I will visit some NHS doctors and ask for Keppra to be completely honest, but maybe that's just my weakness after having been given no solid plan of action.
I can't believe I've been having HPPD for 1,5 years and never even thought of googling whether there's a specialist in Holland. And I never really did. I just did a search on 'hppd'... Via a Dutch bodybuilding forum I got linked to the "drugsinfoteam".
Seriously! That I didn't think of it before! I feel so stupid.
Anyway, apparantly there's a "Medical Consultation Hour for Partydrugs".
I've translated the text to English, please read the second quotes for English.
The following is quoted from: http://www.drugsinfoteam.nl/drugsinfo/xtc/xtc-depressie/
Again.. How the hell did I overlook this? What? Does not compute. Well I found it now, right?!
Anyway I'm glad to find that there is some sort of "expertise" with HPPD in this country.
I'll be making a phonecall soon, and see if I can make an appointment.
Feeling somewhat releived to know this, albeit not knowing the extent of there helpfulness yet.
At least there are people who have experience with HPPD!!! My day can't get any better.
I hope that by posting this, current, and future HPPD sufferers in the Netherlands (and surrounding countries perhaps) will be able to get acute help with their HPPD.
May you all be well
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