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Terrible experience with doctors in the UK


chrismo

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I don't mean to sterotype, but it would seem to me that UK doctors would be very cynical, pragmatic, and dismissive. [Then again so are US doctors, so....]

Sometimes these people are so grounded to earth in their profession that they don't understand the mechanisms but do things based on how they are told to do things.

Where would people like Tesla, Galileo, and Einstein be, if they accepted the status-quo,

Doctors nowadays devote a lot of their time to not messing up their patient's drug interactions.

But like i said they just know to tell their patients not to drink grapefruit juice but don't know why.

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it depends on the character of the doc. I've had dismissive ones who say its psychological, but you get ones who say, 'well i've never heard of it, but i can't see any harm in trying some keppra out on you'. They might be more cautious about prescribing benzos. Keep trying till you find a doc who will work with you. The worst bits of hppd for me (vertigo/anxiety and brain fog) i manage myself very effectively with cheap supplements (acetyl cysteine being the main one, but also magnesium and high dose vit d. High dose b vits seem to help a bit too.) Dont need a doc for these.

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I had the same trouble when I saw my gp they wouldn't prescribe me klonopin or keppra and told me they never heard of the condition and that these drugs wernt licensed to treat it which is rubbish as I later found out they can do off label prescriptions visual snow/persistent migraine aura is more of an accepted condition I emailed lots of institutions who are aware of this condition who advised me to see neuros at kings collage London this is probably the place where you are most likely to flind a doctor with some idea of this condition but there's a few places in London which specialise in migraine some of the meds they try are primarily anti-epilepsy drugs so you might have luck with getting them to prescribe keppra klonopin if you show them the study on it I'm waiting to hear back from my local hospital to see if they have anyone with any experience of visual snow otherwise I'll be going to London

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Dr. Dominic Ffytche is the only person that I am aware of who has a great deal of knowledge about visual snow etc and related disorders. He runs a visual perception disorder clinic out of KCL. There he carries out research etc. It's quite difficult to get referred though - you have to get your PCT to agree to fund you. I haven't been able to do this so far. I'd love to be able to see him at some point, though.

If I am not mistaked if you are referred to the National Hosipital you can be seen at a number of linked hospitals. I was seen at St. Mary's, by someone who is thorough with tests but who has no experience of the disorder. If at the National Hospital at UCL I believe Dr. Gordon Plant works there and is aware of the condition. You should probably try to see him if possible.

With regards to the original post, Klonopin (called something else in the UK I think), is a benzodiazepam and UK doctor's are under guidlines that these are for short-term use only. It's unreasonable I think to expect a GP to instantly prescribe a strong drug for a condition which they have never heard of and for which they would be taking your word for. In order to get them to help you, you need to help them. See them regularly to develop a relationship of trust and bring research articles etc with you to demonstrate that you know what you are talking about and to show that the condition is real. You could also bring along pictures to demonstrate your symptoms. There are published studies on Klonopin, Sinemet, Keppra and others. They probably get people trying to get themselves prescribed things all the time and do not hand out drugs lightly.

Alcohol (I believe) triggered a gigantic increase in symptoms. Many say it can worsen their HPPD. See this thread and others: http://hppdonline.com/index.php?/topic/501-alcohols-effect-on-hppd/

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Hey man. I'm the same, getting swapped from doc to phsych with them both refusing to prescribe keppra. A drug that's been proved to decrease hppd symptoms in a large percentage of those with the disorder. It's like stupid amount of red tape to go through to get prescribed something essentially not that harmful. You'd think I was asking for plutonium lolly pops or something. My doc did prescribe me clonazepam though which helps somewhat. Supposed to be 1mg a day but I find that it takes 1.5 to 3mg to actually do something so tend to go a few days inbetween. Uk docs are overly prescribing the generic version of meds though cos of the free prescription thing which fuckin sucks.

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Thanks for the input guys. I have made a private appointment to see Dr Plant (very expensive but hopefully worth it). I have also contacted Dr Ffytche by email but I'm not holding out out much hope on that one. I think my doctor is of the school that will pretty much never prescribe benzos. I've taken in a few HPPD articles but if anyone can reccomend any that might be particularly useful that would be greatly appreciated. It seems crazy that a doctor will prescribe Clonazepam but not Keppra.

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Please let me know how you get on with Dr. Plant. I was considering seeing him, but it's too expensive (£350 and then £175 thereafter isn't it?) He can see you under the NHS as well but obviously takes a lot longer.

It does seem strange that clonazepam can be prescribed but not Keppra. My previous GP said I could try Keppra but I have since moved to another area (at the time I didn't want to try it). I haven't tried with the new doc yet, but he doesn't have the same understanding of the conditon so not too confident at the moment. But I'd like to try at some point for non-visual symptoms that may or may not be related to HPPD.

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Chris, here are some suggestions when talking to the doctor. Do not use the word hallucination to refer to symptoms of HPPD, unless you are in fact seeing true hallucinations. Refer to seeing altered vision. "I never see anything that is not there, but my visual field is overwhelmed by static, I see persistent afterimages, I have difficulty reading." and this type of language prevents the doctor from going down the schizophrenia track. Unless, you feel that you do see or experience reality that you question, "Is this real or is this fake?"

Printing out Dr. Abrahams original article with the symptom list is your first paper. Highlight the symptom descriptions. I can advise you that I have spoken with Dr. Abraham and neither of us are happy with the diagnostic criteria in the DSM-IV, but Dr. Abraham has included as much information to hope that the new DSM will have an improved definition. It is not likely, but this is fine. We will find a way.

I am friends with the Dr. Sumnali, as he states on his profile:

"I also have personal research interests in psychopharmacology, and addictive behaviours, with a focus upon causes, consequences, and experiences of drug use. I am interested in the psychopharmacology of entactogens and hallucinogens and the developing field of new psychoactive drugs (so called 'legal highs')."

In January 2011 I he was appointed to the Advisory Council on the Misuse of Drugs (ACMD)

In December 2011 he was elected President of the European Society for Prevention Research (EUSPR)

He re-tweets all of my HPPD tweets and is a great resource with the credentials and connections to back it up in the UK. So, we can look at ways to help. There are always solutions, and I hope that my presence around the board these days can help bring back and show you what I have been doing to open up pathways.

We will need to be very savvy patients, and consider ourselves participants in both our medical treatment and the promoting and awareness efforts of our disorder, which includes research.

Also download the Lerner articles that refer to HPPD as two disorders, klonopin as being helpful and a great review of experiences. Another, is the article from an Opthalmology office describing three cases of people with HPPD and expresses the need for the neurological and opthalmological communities to share with the mental health specialists to ensure we are not falling in the cracks.

Trust me, I just saw a new doctor and they dismissed the HPPD. I have to laugh thinking what is being written in the chart, "Pt. states he was diagnosed by MD who the pt. states is advisor & first to characterize the disorder. Pt. also states having published papers in medical journals and claims to be told by aforementioned MD to be the most knowledgeable person in the world on the disorder HPPD. Pt. may be experiencing a manic state or gregarious feelings regarding his relationship to his disorder."

I just say, "Google Me." It worked once.

- David

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Thanks, David. Yes, I fear part of my problem to date has been that I have used the H word too frequently. I have shown my doctor several articles including Dr Abraham's and ones related to the efficacy of Klonopin and Keppra. The problem I am experiencing currently is constant buck passing between doctors, neurologists, opthamologists and mental health specialists with no one willing to prescribe me any that could potentially be helpful. I hope my upcoming appointment with Dr Plant will be different and I intend to go in armed with as much information as possible (will look to download the Lerner articles).Your last paragraph is particularly hilarious/depressing. I made the mistake previously of drawing my doctor's attention to this forum and got the response that I may have convinced myself that I have disorder that does not actually exist.

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  • 2 weeks later...

Hey, welcome to the forums, nice to have you here. If a doctor tells you hppd dosent exist, just tell him to fuck off. I'm not one for doctors, never sought treatment, but i could only imagine the rage one would feel when someone tells them their disorder isnt real. just awful I imagine. Well, like i said, nice to have you here, see you around.

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Is ignorance bliss? I knew something was very wrong for years n years but didn't have a name to put to it, doesn't make it any less real. Least now I know I'm not the only one and there's comfort in that. I knew I didn't quite fit in any 'drug physchosis bracket' that I knew of. Allthough you feel bad that anyone should have to go through this shit because of a bit of experimentation.

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Chris I am currently going through the process of trying to arrange an appointment with DR ffytche I have been in contact with him and no waiting to get approval from My local PCT going down the private route might not be possible due to the nature of this condition and the hospital the clinic is run out of my insurers don't cover it well that particular hospital they cover kings but not maudsley hopefully i'll get it on the nhs

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  • 1 month later...

i have had hppd for 10 years...only recently found out i have it...i showed my psychiatrist some info about hppd...he told me its not a recognised dissorder...he said its not in the international mental health manuals they learn from in the uk...also these symptoms are catagorised under skitzophrenia and antiphychotics are usually prescribed for such a dissorder...ive spent a long time trying to convince doctors of my dissorder...seems noone knows about it in uk

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It does seem that way. But by sharing our experiences and personal research us UK HPPDers seem to be making slight progress and there do seem to be a few potential individuals out there with experience of treating the disorder and/or have conducted research (see previous posts.) But your typical GP, forget about it.

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