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cluxe

Private appt. with Doctor Plant at King's College Hospital (UK specialist)

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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.

 

Thought? Questions?

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I'd definitely avoid his advice on alcohol... If you can live without it, it will have no downside, health wise... Alcohol changes the chemicals in your brain, just like any other drug. It absolutely has a huge impact on my hppd, sometimes for 4 days after drinking (and who knows what it has done to my recovery chances).

 

Unfortunately, like the rest of us, this guy seems to be using guesswork as much as anything else. Seems to be common practice... At least he didn't just wave it off as depression or psychotic behaviour, like most doctors.

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I agree alcohol plays a big part in symptoms. If I get sufficiently buzzed my symptoms go away almost entirely and I can see and think so much clearer, but the next day the hangover lingers on for days..

Thank you for sharing.

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I've seen dr plant aswell (privately!) - lovely bloke. He took me seriously and listened to me, which is more than can be said for others. It's just a shame he can't offer any kind of solution!

cluxe - the other condition is "visual snow" bud. There's groups on fb (as for hppd). Very similar conditions. I've also seen drs weatherall, Bowden-jones and goadsby who are all interested in hppd/VS. Unfortunately it's the same story as plant - they can't offer any decent practical advice at this stage cos they just don't know. But as jay says - at least they don't just dismiss you as anxious/psychotic (*ahem* GPs!!!). Sometimes it can be so reassuring just to have a doctor really listen to what you're saying and "get" where you're coming from.

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Sounds like pretty much the best information he could have gave you for this condition. Theres really not anything else they have to offer. I dont completely agree with his stance on benzos if people feel their anxiety is bad enough that they need them. But there are alternatives in herbal medicine that would work as well.

Hes right about alcohol too, but if you dont want to consume it thats not bad either.

If you are trying to limit even minute amounts though that are in other foods its a bit unnecessary, as you should know, your body produces some ethyl alcohol in its own metabolism.

Edited by dasitmane

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yeh i think his point about not being obsessive is about avoiding vinegar rather than avoiding booze.  I'm sure avoiding booze is fine but if you go into getting anxious about avoiding fvinegar or i dunno like people wearing perfume or using hand sanitizer or whatever you may get an alco microdose from then you may end up not helping yourself.  Perfectionism is not mentally healthy.

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