Danny13

I wonder if autoimmune responses and inflammation are linked in anyway to the white matter lesions found on my mri? 

I’ve had numerous blood tests regarding autoimmune problems and inflammation. All came back normal. My crp was very low!

Anti-inflammatory drugs have zero effect on my hppd. 

My WML may also be due to coke and amphetimine use over several years.

It is important to consider that initial reports on my MRI were normal with no significant findings. Had to get them looked at again by another neurologist with experience of our condition 

White matter lesions in deep parts of brain . Around 10 in number and all less than a millimetre.

Unlikely to be direct cause of visual symptoms and more likely due to migraines suffered over many years.

One side of the visual part of brain, the occipital lobe, was marginally smaller than the other. Smaller side also had changes in QEEG. Possible implication is that blood flow to this part of brain was affected at some point and may be connected to visual symptoms.

Boozebome

Which brands do you use?

Cheers

This stuff definitely helps my visual symptoms. HPPD for 23 years. Only high dose diazepam has helped previously.

I had complete freedom from symptoms for about 10 minutes the day after a neurofeedback session.

I call it my 'Ikea moment'. I was in Ikea in Croydon and boom all of a sudden I was back. This was about after session 20 from memory. It only lasted a short period as I freaked out being back to pre hppd.

Unfortunately I ran out of money shortly after this and the sessions had to stop.

Survey

how is this combo working out for you?

I think holland could do well. rvp is on fire

Jay

my england team would be

Shilton

Samson Butcher Walker Parker

Waddle Hoddle Robson Barnes

Lineker Shearer

experience is key!

I was very good at middle to long distance running. Breaks my heart that I gave it up for drugs at 15.

However, have returned to running after 20 years and can do 5k in under 19 mins and still improving - not all is lost

thank you

maybe it was something to do with the prior years abuse of klono and alcohol - I had been clean for 2 years but perhaps receptors were still sensitive

After having this for 19 years you tend to do a lot of your own research!

I am at a loss though where it is available? can anyone help? Spain and Italy use it for Migraine treatment but that is as far as I have got.

What about dotarizine?

Gp says not licenced in uk. i will try private clinic to get them to prescribe. if not internet it is. does anyone know good reliable sites?

Hi gormeh

no havent checked it was just from reading up about it

has anyone else tried to get prescribed in uk

Great news - I have had hppd for 19 years this june and probably up to the 50 med mark

Does anyone know where I can get Flunarazine in the UK as not available for docs to prescribe it?

Many thanks

Danny

I have tried it and it did nothing except give me a headache!

the referral took about 6 months

I would be interested to know which professionals have responded to you?

In my experience most psychiatrists just wanted to put me on anti-psychotics - no no no

Med I am really interested in trying is Sinemet although my doc has warned me about the potential long term side effects specifically tremors

Shocking about the MENSA! I had a pretty high IQ, im sure it's still in there somewhere, but ever since I developed DPDR my cognitive abilities have gone to shit, I can barely retort when people speak to me without sturttering or mispronouncing words...ive forgotten alot of vocab and keeping a train of thought is many times difficult...thanks for the hope man.

I was exactly the same for many years. I got over it through sheer hard work and never giving up. I'm sure the reduction in your cognnitive abilities can be overcome but it is not easy and takes a long time.

Hello

I am sorry to hear that you are struggling and you are correct in saying it is really hard. I can't specifically recall a turning point it was more of a gradual strong minded approach to not letting this ruin my life.

Lamictal did nothing for me which was very frustrating as I had high hopes for it.

Lexapro (Cipralex in UK) has really helped by eliminating all anxiety and panic attacks. This in turn has reduced my dp and dr. It has done nothing for my visual symptoms or that trippy feeling. As for side effects the main ones have been weight gain, daytime sleepyness, dry mouth, reduced sex drive and dry eyes.

Hope this helps

All the best

In my experience there are none. I have seen Dr Sierra at KCL who is an expert in DP/DR. I cannot praise him high enough.

To see him you will need to get a referral.