Urgently Need To get Diagnosed - Please Help

[Charlotte8]

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:

 

I believe I have sustained brain damage after taking abuse of recreational drugs in 2008 (MDMA and amphetamine).

My symptoms are extreme depression and permanent visual hallucinations that are present 24 hours a day.

 

There is extensive research proving that MDMA causes damage to the serotonin system of the brain, leading to permanent depression.

 

I have so far not been able to get a formal diagnosis of the brain damage because I have not been able to find a doctor that specialises in recreational drug induced brain damage.

 

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.

[VisualDude]

HPPD doesn't have a particular treatment protocol, so not sure how that particular diagnosis would open doors for you.  There are some members in Europe that report getting diagnosis ... will just have to wait for those members to post a reply.

 

However, if you want a diagnosis with broad treatment options, find a doctor who will diagnose you with Toxic Encephelopathy which simple means chemical brain injury.  A Neurologist or an Environmental and Occupational Medicine doctor should be able to help you.  Look for a Neurologist that specialized in brain injury such as TBI or drowning.

 

Have you tried any medications and, if so, how did you respond?

 

What are your particular visual symptoms?  Also, any physical symptoms?

 

HPPD is most often managed with Klonopin.  Some have reported Lamictal helping.  Also Klonopin.  More recent some have had results with Sinemet.  It is highly individualistic which meds you will respond to.

[Charlotte8]

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.

[mgrade]

What does it matter, your diagnosis, except if it is a "physical" ailment?

The real question is: what is the TREATMENT?

[VisualDude]

It is not likely to show on any sort of imaging since the problem is diffuse, not focal.  And in spite of suffering, it is considered mild.  A doctor will likely do an MRI and an EEG to rule out major stuff - which is a good idea anyway.

 

Diagnosis is done "clinically".  Clinical Diagnosis just means observing a persons problem and making a judgement.  Medicine used to be done mostly this way.  Even common neurological diseases such as Parkinson's Disease are diagnoses this way.  The only accurate way is to dissect the brain when a person is done (dead).

 

A growing field of testing is Neurocognitive testing.  Basically a more extensive IQ type of test with written and verbal questions and pictures.

 

A few questions:

 

While you are searching for a doctor, do you have a primary care doctor who is willing to try stuff besides a SSRI?

 

Did the SSRI change your hallucination visuals at all?  (moving patterns with eyes open are OEVs, and with eyes closes are CEVs)

 

The depression with inability to enjoy things may involve dopamine (hard to know).  Wellbutrin is a dopamine based antidepressant you could ask for.  Do you have problems with anxiety?  Also, if you get Wellbutrin, work with a small dose only ... and get a pill that you can cut in half such as Wellbutrin SR.

 

 

 

The relevance of getting a diagnosis is because medicine has become a business.  So technically doctors can't legally prescribe medicine without a diagnosis ... at least that is what has happened in the USA.  It is probably true in many countries as well.  The good-old-days when the doctor was a god are gone.  Now money is a god.

[mgrade]

Very true, Visual.  

 

A clinical diagnosis is sort of a moot point in the mind of a patient, because whether your diagnosis is neuropathy or HPPD or whatever, and you get Gabapentin, it's still Gabapentin.  

 

Yeah, if you are a doctor, you need to have a diagnosis.  But if you are schizophrenic and are prescribed Klonopin and he writes in the office computer or in the patient's file it is for insomnia, what does it matter to the patient, it's still Klonopin.