Charlotte8

Can someone please confirm whether the funds are currently available. I am not a researcher but a sufferer of HPPD - if funds are available I will mention to every doctor/researcher I contact (every little helps).

Thank you Visual - never come across that term before - hopefully that will help me find a doctor. (So far I have just been googleing 'mdma brain damage neurologist' etc.)

I am worried that I will have to have a brain scan to prove the damage. Is it possible to get a diagnosis without a brain scan?

Because the damage would only show up on a PET scan and I cannot find any evidence for them being used in clinic to diagnose a person - they have only been used in research. 

Backstory:

I used MDMA and speed heavily for 9 months in 2008 at the age of 18.
Before taking MDMA I was a highly productive person, after the 9 months I became extremely depressed. I now find it an immense effort to cook for myself. I cannot enjoy anything and to be honest every second I am awake I am in hell.

Each time I took MDMA I would get more depressed.

The final time I used I hallucinated and the hallucinations never went.

My hallucinations are with me 24/7 - neon coloured patterns over what ever I look at. They also stay when I close my eyes. To my knowledge have no physical symptoms (but I am not sure what you asking me here?) To be honest the hallucinations are the least of my worries – the not being able to feel happy or enjoy anything is a far bigger priority, since I am suffering greatly.

I have never taken any meds for the hallucinations.

I was on sertraline an SSRI for the depression -  it helped a lot but I made the decision to come off it 7 months ago so I could try different fixes for my brain and not have them interact.

Also having come off it I now realise it was clouding my thinking. 

Thank you so much for being so helpful.

Hi everyone,

I need my HPPD (which I have been living with for years) formally diagnosed as soon as possible.

Does anyone know of any doctors that recognise HPPD as a condition and could diagnose me? I live in the UK, but I am willing to travel. I am aware of Dr. Abramham in Boston, but I am hoping someone here can suggest someone closer.

So it would be great to hear from anyone who has been formally diagnosed and is in the UK.

Back story:

There is a treatment I think can help me, it is not licensed where I live so I have found some places in Europe where it is licensed.

They will however not treat me without a formal diagnosis. (I don't think they are legally allowed to.)

I cannot find any doctors that even recognise  mdma/speed induced brain damage.

Therefore I am hoping that if I get a diagnosis of at least my HPPD it may be enough for them to treat me.

Thanks.