chrismo Posted November 27, 2012 Report Share Posted November 27, 2012 I have just returned from an appointment with a neurologist who has experience dealing with patients with HPPD. Strangely, he said that although the vast majority of the people he has seen have been young or students their HPPD was not drug-related and he does not believe drugs are the cause. It sounded to me like a lot of them weren't being entirely candid, but still. Weird. Despite his experience of treating HPPD patients he was unaware of drugs such as Keppra or Sinemet being prescribed for the condition and seemed puzzled as to why they would be. Needless to say I'm very disappointed and despondent. This guy was supposed to be one of the best in the country for HPPD and the appointment was very expensive. He did, however, prescribe me Clonazepam and has reffered me for an EEG. Eh. 2 Link to comment Share on other sites More sharing options...
mgrade Posted November 27, 2012 Report Share Posted November 27, 2012 Sounds a bit anti-climactic. It's like UK doctors are still stuck in the 18th century. Are hack-saws still the main treatment for infection over there? Link to comment Share on other sites More sharing options...
Monkey_magic Posted November 27, 2012 Report Share Posted November 27, 2012 LOL. I think that's the case -mg. chloroform will cure everything. Whenever I say to docs or pdocs here 'yeah, but in America.....' They roll their eyes. It's not like Brits haven't been taking drugs for decades like you Yanks as well. Bloody cross border communications has come on leaps and bounds since the invention of the Internet but you still wouldn't know it sometimes in the medical profession here. Klono and an EEG is a start though chris. HPPD not drug related though? How gullible is this neurologist? Link to comment Share on other sites More sharing options...
Sammywalker2009 Posted November 27, 2012 Report Share Posted November 27, 2012 Chris i wrote on your introduction but i'll write on here too I am currently going through the process to set up an appointment with doctor Ffytche this wasn't the doc you saw was it lol. have you not considered seeing this doctor yourself as he seems to be quite aware of visual distortions ? Link to comment Share on other sites More sharing options...
chrismo Posted November 27, 2012 Author Report Share Posted November 27, 2012 Anti-climactic certainly. Yeah, I think the next step is to put leeches on my eyes and smash a hole in my skull with a rock. Gullible, or possibly just worringly ignorant. He didn't ask me at any point about past drug use; I had to volunteer that information. Seemed convinced that drugs were not the issue and that a lot of the symptoms are just 'hypersensitivity'. Sammy, no it wasn't Dr Ffytche. I'm having real trouble getting a refferal to see him and I can't get a private appointment at the clinic he works at without insurance. Link to comment Share on other sites More sharing options...
John Smith Posted November 27, 2012 Report Share Posted November 27, 2012 You should show them Dr Abraham's page, it's awfully informative...and HALLUCINOGEN persistence perception disorder...how is that not obviously related to drugs? Many times ive had to point at the DSM on some hacks wall and point them to HPPD so they dont think im making some shit up Link to comment Share on other sites More sharing options...
Sammywalker2009 Posted November 27, 2012 Report Share Posted November 27, 2012 Ah damn hopefully I don't have trouble I have to get approval from my local primary care trust which I'm hoping isn't going to be an issue it's all very frustrating keppra is an anti-convulsants which are generally used to treat visual snow I've read that many places on the Internet keppra is a well tolerated anti-convulsant I don't understand doctors who don't want to try it it's not as if it's a drug we would want to try or abuse we don't think mmm can't wait to get that keppra fix lol Link to comment Share on other sites More sharing options...
Ghormeh Sabzi Posted November 27, 2012 Report Share Posted November 27, 2012 Was this Dr. Green? I know that he is aware of people with our symptoms, but didn't think he was an 'expert'. It surprises me that he doesn't think drugs are the problem - it's well known that although you can get these symptoms without drug use, you can also clearly get it from drug use as well. Sounds dissapointing - glad I never saw him myself now. Dr. ffytche doesn't do private appointments. I think the only way to see him is to get your NHS primary care trust to agree to fund you - no easy task (don't know if there is some way around this with insurance). I'll keep trying but have got nowhere yet. But if you do get to see him I'm sure it would be very beneficial - I have spoken to him over the phone and he really knows what he is talking about. He has also written briefly about HPPD in a research paper or two. I wouldn't pay for an EEG privately personally, since it'll most likely come back normal. You can get one fairly quickly through the NHS once you have seen a neurologist (had mine a couple of weeks after neuro appointment if I remember correctly). Link to comment Share on other sites More sharing options...
chrismo Posted November 28, 2012 Author Report Share Posted November 28, 2012 It was Dr Plant, not Dr Green. Definitely think Dr ffytche is the best person to see. I have corresponded with him by email myself and he certainly seems like he could help. But yeah, really difficult to get an appointment with him. Frustrating. Link to comment Share on other sites More sharing options...
Jay1 Posted November 28, 2012 Report Share Posted November 28, 2012 Don't forget the vast, vast majority of us on here that tried Keprra and Sinamet guinea pigged ourselves.... There has only ever, to my knowledge, been one case study about Keppra helping "flashback" patients.... So don't be too worried that he doesn't know about that connection. Similar with Sinemet, I think it was involved with the latest Dr.Abraham test, but with an add-on med. I'm not sure his results have even been published.... It was only leaks around the forum that got everyone hyped about Sinemet. Link to comment Share on other sites More sharing options...
Ghormeh Sabzi Posted November 28, 2012 Report Share Posted November 28, 2012 It was Dr Plant, not Dr Green. Definitely think Dr ffytche is the best person to see. I have corresponded with him by email myself and he certainly seems like he could help. But yeah, really difficult to get an appointment with him. Frustrating. Dr. Plant is indeed the one I was thinking of, not sure where Dr. Green came from! Link to comment Share on other sites More sharing options...
VisualDude Posted November 28, 2012 Report Share Posted November 28, 2012 Strangely, he said that although the vast majority of the people he has seen have been young or students their HPPD was not drug-related and he does not believe drugs are the cause. It sounded to me like a lot of them weren't being entirely candid. Interesting. Mine is not drug related but would guess you are right about people being 'candid'. he was unaware of drugs such as Keppra or Sinemet being prescribed for the condition and seemed puzzled as to why they would be Increasing dopamine to treat HPPD is the 'cutting edge' research via Dr A. Don't think there has been any offical testing of Keppra. It is as Jay says. It is interesting though, that I saw a brain injury neuro and he was well aware of using dopamine agonists to treat brain injuries ... so my visual improvement with this type of med wasn't a surprize to him. Link to comment Share on other sites More sharing options...
David S. Kozin Posted November 28, 2012 Report Share Posted November 28, 2012 All but one doctor, Dr. Henry David Abraham, has had any experience with HPPD. I was recently sent from my long-term primary care doctor group because my issue was "clearly beyond the scope of their care." I can understand this. Visiting a doctor is difficult for me, which you would think should be a breeze. I have to see any doctor I can because I don't have the luxury any longer. It is hard to tell a doctor, "I have a disorder, it is called X, and I know you never heard of it and I can tell by your questions. Who diagnosed me? [Point to Dr. Abraham info]. I also had Dr. Abraham read my Senior thesis on the disorder [point to hardbound text] and have written and conducted original research. So, if you need to consult with someone, it would be me. Then I give up if it looks like they think I have a form of delusional thinking disorder and say: JUST GOOGLE ME. I'll be glad to show you what happened (with copies of my actual medical records). - David Link to comment Share on other sites More sharing options...
chrismo Posted December 5, 2012 Author Report Share Posted December 5, 2012 An update on the Clonazepam: can't believe I wasn't prescribed this earlier. My visuals have reduced slightly and I have gone from feeling helpless/suicidal to hopeful and able to make it through the day. My worry now is continuing to get it prescribed as my GP is very resistant to it and I don't have a follow appointment with the neurologist for some time. Also in the referral letter to my GP he states that "although I have seen a large number of patients with these symptoms there has never been any evidence of any identifiable underlying disorder." And, despite saying that he would refer me for an EEG I have instead been referred for an electroretinogram. I'm not sure why. Link to comment Share on other sites More sharing options...
Jay1 Posted December 5, 2012 Report Share Posted December 5, 2012 Careful with the clonazepam.... It's great, but highly addictive.... sooner or later, you would have to battle addiction as well as hppd. If you can take them a couple of times a week as a kind of break, you can do that for life. Your GP might prefer that too. Link to comment Share on other sites More sharing options...
VisualDude Posted December 6, 2012 Report Share Posted December 6, 2012 GP he states that "although I have seen a large number of patients with these symptoms there has never been any evidence of any identifiable underlying disorder." And, despite saying that he would refer me for an EEG I have instead been referred for an electroretinogram. I'm not sure why. He probably realizes that this type of problem is more brain oriented that retinal in cause. It is good he acknowledges many people with this kind of problem! An update on the Clonazepam: can't believe I wasn't prescribed this earlier. My visuals have reduced slightly and I have gone from feeling helpless/suicidal to hopeful and able to make it through the day. My worry now is continuing to get it prescribed as my GP is very resistant to it Great that it helps. How much do you take in a day? Link to comment Share on other sites More sharing options...
chrismo Posted December 6, 2012 Author Report Share Posted December 6, 2012 At the moment, 1.5mg -3mg a day. Link to comment Share on other sites More sharing options...
Monkey_magic Posted December 7, 2012 Report Share Posted December 7, 2012 I've just been prescribed a new script of clono after not taking it for 3 weeks! Took 1.5 mg straight away n it Was sooo good . I deffo need a better structure/cycle when it comes to taking them though as I don't want to build a tolerance as fast or worse an addiction. Link to comment Share on other sites More sharing options...
Monkey_magic Posted December 7, 2012 Report Share Posted December 7, 2012 I was thinking though. I know clono is pharmaceutically the best benzo for silencing the over excitement of hppd brains, but if you took clono for 3-6 months semi sparingly then say had a couple of weeks off, then went on a cycle of lorazepam for 3-6 months and done the same, and at a push went on to Xanax for so many months and resumed clono after this in a circular motion. Would this not be ok? I know GABA receptor are GABA receptors but the wouldn't the subtle difference in the drugs means the benefits of them would be reset and you can still get relief in a benzoadipine way? Link to comment Share on other sites More sharing options...
Monkey_magic Posted December 7, 2012 Report Share Posted December 7, 2012 Allthough good luck pushing that idea on your doc lol. Maybe the best bets to do a doctorate so you can prescribe meds to yourself lol. Link to comment Share on other sites More sharing options...
shaolinbomber Posted December 7, 2012 Report Share Posted December 7, 2012 I was thinking though. I know clono is pharmaceutically the best benzo for silencing the over excitement of hppd brains, but if you took clono for 3-6 months semi sparingly then say had a couple of weeks off, then went on a cycle of lorazepam for 3-6 months and done the same, and at a push went on to Xanax for so many months and resumed clono after this in a circular motion. Would this not be ok? I know GABA receptor are GABA receptors but the wouldn't the subtle difference in the drugs means the benefits of them would be reset and you can still get relief in a benzoadipine way? I would just stick to klonopin if you definitely have to take it. Switching around to others is probably a bad idea, especially Xanax or Valium. Those 2 are by far the most addicting. Hell I think Valium feels more like an opiate than a benzo. 1 Link to comment Share on other sites More sharing options...
shaolinbomber Posted December 7, 2012 Report Share Posted December 7, 2012 All but one doctor, Dr. Henry David Abraham, has had any experience with HPPD. I was recently sent from my long-term primary care doctor group because my issue was "clearly beyond the scope of their care." I can understand this. Visiting a doctor is difficult for me, which you would think should be a breeze. I have to see any doctor I can because I don't have the luxury any longer. It is hard to tell a doctor, "I have a disorder, it is called X, and I know you never heard of it and I can tell by your questions. Who diagnosed me? [Point to Dr. Abraham info]. I also had Dr. Abraham read my Senior thesis on the disorder [point to hardbound text] and have written and conducted original research. So, if you need to consult with someone, it would be me. Then I give up if it looks like they think I have a form of delusional thinking disorder and say: JUST GOOGLE ME. I'll be glad to show you what happened (with copies of my actual medical records). - David Gawd I know what that's like all too well. Link to comment Share on other sites More sharing options...
Sammywalker2009 Posted December 7, 2012 Report Share Posted December 7, 2012 I find Valium doesn't do anything for me most I've taken in one hit was only 4mg all it did Was give me a dry mouth I need something stronger Link to comment Share on other sites More sharing options...
Monkey_magic Posted December 7, 2012 Report Share Posted December 7, 2012 Maybe try the odd switcheroo with lorazepam then? I've tried that and there's not a huge difference between that n clono. Cept lorazepam s maybe slightly better for sleep. Link to comment Share on other sites More sharing options...
shaolinbomber Posted December 9, 2012 Report Share Posted December 9, 2012 I find Valium doesn't do anything for me most I've taken in one hit was only 4mg all it did Was give me a dry mouth I need something stronger take 60mg of valium at once and you will be fucked up. By the way not actually saying do it. You know what i mean. Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now