# My Story + various medication along the way + partial success



## wasted_years (Dec 10, 2015)

Hi, I've suffered from DP/DR for roughly 12 years. Unfortunately I have the chronic version which never seems to go away completely (until very recently). I somehow managed to bring it on myself after one night of deep existential crisis when I was about 28, I woke up in the morning and my vision was 'different' it felt very similar to having a hangover (or at least my previous experience of a hangover) however unlike a hangover it never went away. I then started suffering all sorts of odd symptoms, dizziness, brain fog, inability to learn, which culminated in me having panic attacks and having to visit hospital a number of times concerned I was dying.

After a battery of physical tests including MRI scans nothing was found wrong with me and after breaking down in tears at the doctors in frustration due to the inability of anyone to discover what was wrong, I was given anti-depressants. These didn't really work - I think the first ones I tried were paraoxetine. I was also given lorazepam for anxiety which worked fantastically and reduced my vision issues almost completely. Unfortunately due to its addictive nature I was never able to continue on it for long or convince a GP to give me more. Curiously I only ever suffered the DR part of DP/DR - I never had any loss of sense of self but my vision always seemed odd and 2-dimensional, cartoonish even, with lots of floaters and visual snow etc.

Eventually I found a definition online of what I was suffering from, and through some contacts in the NHS got referred down to the Maudlsey DP research unit in about 2010. I saw Dr Sierra and had a discussion during which he explained his theory as to how DP/DR worked in the brain. I was prescribed venlaflaxine and lamotrogine in combination and went away much more confident that I would recover.

To cut a long story short - I remained on that combination for a long while - but it never really improved or fixed my DR. A few years ago I came off the lamotrogine and also then stopped all medication as I was by then convinced nothing would fix me. I spiralled into a fairly serious depression after that and have been treated by a sympathetic GP who's trying to re-refer me back to the Maudsley at the moment.

Anyway, congratulations if you read this far and thanks for letting me share my story. The one ray of hope I do have to offer other sufferers is that I was recently put on a combination of 300 mg Pregabalin, 30 mg Mirtazapine and 75 Venlaflaxine. I cant take more than 75mg of Ven or I lose all sex drive but the Pregabalin actually seems to have cleared up my DR and wiped away a lot of anxiety. Possibly because it affects similar areas of the brain as traditional benzos (but without the addictive effect). The "california rocket fuel" combination of mirtazapine and venlaflaxine also seem to have had a really positive effect on my previously fairly treatment resistant depression.

So after suffering for 12 years I've actually finally found some relief. Whether the DR was caused by excessive anxiety and the pregabalin has cleared that up - or whether depression was the root cause I am not sure. I'm certainly not 100% cured either as I've only been on the medication for about 3 months but just wanted to share my story and to advise people to keep trying new medications / lifestyle changes etc as the right combination can be hard to find but could still be out there.


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## Guest (Feb 9, 2016)

i know how frustrating it is to suffer for a longer time, more chronic. I appreciate your story and thanks for sharing it.


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## wasted_years (Dec 10, 2015)

Yes I was surprised as well that Pregabalin seems to work. I can only assume that because I had similar results with benzo type drugs that the root cause of the visual effects must have been related to severe underlying anxiety. I don't think I'll get re-referred to the Maudley as the local Health Authority refused the GP's recommendation for me to visit (Manchester). She's tried to appeal against it so just waiting to hear what the result is, but as you say Elliot I don't think they'll be able to offer me anything that the GP wont.

When I spoke to Dr Sierra his theory was that there are two main elements in the brain that affect the way we visually perceive objects and our surroundings. I'm not a Doctor and I don't have much knowledge of how the brain works but his explanation to me was that one part is involved with "recognising" the object or person and another part adds emotional "colour" to the object. When the brain enters fight or flight mode due to elevated adrenaline levels then the part that adds "colour" to the object is shut down as it isn't required at that point due to you thinking you're in danger.

His theory regarding my case was that the adrenaline "trigger" had been set incorrectly somehow and that caused it to fire constantly and shut down the relevant area of the brain. At that point everything looks strange as you aren't used to seeing the world without that element functioning. This then causes more anxiety and keeps you in the loop.

I actually can't tell if I've completely recovered or not as its been so long since I was initially effected that I've kind of got accustomed to my visual perception being slightly off. What I have noticed since cutting out caffeine and taking the combo of meds I listed above is that theres been a dramatic reduction in underlying anxiety (racing thoughts, constant worry) and that visually everything seems much more solid, clearer and brighter. I can actually appreciate looking at a landscape or a tree for example whereas previously it would just look strange and I'd then worry about that. Pregabalin made me extremely euphoric the first time I took it but then levelled off almost immediately but it certainly seems to have an effect on my visual perception.


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