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robbie123

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Everything posted by robbie123

  1. Hi yeah from up North in Scotland. Where men are men and sheep are terrified .
  2. Hey great post . I've had HPPD since 1980, 44 years give or take, been on many medications and here is my take on the condition (Don't rate it as an illness more a physical condition) For me its always been quite a painful condition Headaches ,Head pressure and fatigue and general lethargy, I think the condition puts pressure on our visual system and tires out the brain and causes headaches etc . So its a really difficult condition to deal with and the visuals give you a constant reminder of the mistake you made all those years ago, Don't be hard on yourself the vast majority of people will try illegal drugs so don't blame yourself. What we do know now is that HPPD is not a mental illness , It may cause depression and anxiety and you will go through stages when you notice HPPD and you obsess over it ,its times of HPPD focus that will be your worst times and your best times will be when you absolutely forget about it and get on with your life ,Like any obsession it can be so destructive and that can affect your life very negatively , The best times throughout my life is when I was living and HPPD faded into the background , The worst times were when i focused on HPPD looking for a cure looking for a medication. You will do so much better if you just accept you have a condition that has heightened your visual system and just get on with life . Medication wise the only medication that has made any difference is Diazepam and Klonopin Muscle relaxers and really on a as required basis and opiates like dihydrocodeine can make you feel better and lift your mood . I exercise daily and eat healthy after being diagnosed with celiac disease and can honestly say that exercise and eating healthy has been the best medicine, and staying busy and not obsessing over something I cant change. On the positive side HPPD stopped me taking drugs immediately and kept me on the straight and narrow, So maybe dodged a bullet getting HPPD but its been hard at times ,But hey what isn't ? live is hard in general ,Nothing is easy, I have read recently about people with HPPD micro dosing and curing HPPD and its interesting for sure but I would be cautious believing anything you read online and that relates to wonder cure supplements that doing absolutely and cost a fortune, HPPD does reduce over the years with certain symptoms like after image and strobing , When I first contracted HPPD putting a light on in the morning was pure after image for about an hour, Couldnt play pool or snooker without balls floating everywhere, That has reduced by around 90% ,Static has stayed the same ,Tinnitus stayed the same and aggravated by covid vaccination . I'm pretty sure now HPPD isn't going away after 44 years, Nothing I can do to change it, And not sure I care that much anymore , Only the headaches and head pressure are a pain in the ass and had the biggest negative effect on my life. I consider myself lucky that I didn't end up with a mental illness and a basket case like so many or dead through drug abuse . HPPD can throughout your life spike up and down and it doesn't take much to rattle it , Certain medications, alcohol ,or stress can make ripples in the HPPD pond and you just need to understand what rattles it and avoid . Good luck guys ,Stay healthy and get living. HPPD shouldn't stop you doing anything ,Stay positive . Best Wishes Robbie Stay Busy ,Stay
  3. Acceptance is everything with HPPD because time is the only healer with HPPD . Nothing you do will reduce your symptoms, You can make them worse by continued usage but the symptoms will only dissipate over time a long time . My visuals have reduced significantly over time 40 years to be precise . I know longer have flooding visuals when switching on a light for the first time . Static remains the same and after image is much reduced over time but it took over 20 years for it too begin a gradual reduction . My opinion is that halogenics can alter the visual cortex maybe permanently if not for a long period off time . Its really how you adapt to it I think . You can spend the first 15/20 years worrying about it like I did or you can accept it not worry about it . The physical symptoms are more worrying like fatigue brain fog and head pressure these you can do something about with medication over short periods . Good luck . Robbie
  4. Hi Lucca yes tried it years ago . Nothing significant good or bad came from taking it . But I get what you mean I've taken other meds that has caused a HPPD Spike several times over a 40 year period suffering with HPPD. The spikes always go away and return to base over time and I guess that depends on what you took and for how long . I was on painkillers for years 20 years and even titrating down caused a huge HPPD spike . Our Nervous systems are so sensitive too medications and taking the wrong medication can cause spikes in HPPD . But it will return to base and quicker if your focus is on something else . Most really bad spikes only lasted say 6/8 weeks and they then gradually went down to baseline . Stay strong you will be fine . Nice chatting to you. best wishes Rob
  5. Thought I would put this up as a new topic as the original is dated . And there seems to be fear around the prospect of ageing with HPPD Hey thought id give you my take on long term HPPD . 57 years old now and contracted HPPD when I was 15 , So had HPPD for say 41-42 years give or take . So what I can say for sure is that HPPD diminishes at such a slow rate that its barely noticeable ( But it does Diminish } My HPPD sits in the background now opposed to being at the forefront In terms of visual symptoms and some mental symptoms. For me personally I do think HPPD does on some level effect you physically as you get older but this view is subjective . I seem to be suffering More from what is definitely HPPD related fatigue. The fatigue along with Visual symptoms are a HPPD constant for me and I think as I get older it is getting progressively worse .... But this is subjective as I have a underactive thyroid which I was diagnosed with 30 years ago ( taking thyroxine for the condition) which I've felt has never really worked for the condition and I think my HPPD cancels out any attempts to relive fatigue. Its possible if not probable that HPPD will impact cognitive ability as you increase In age as they co-exist within the same space . But from what I am experiencing both physically and mentally Id say that HPPD will not cause any conditions It will only effect conditions . IE If I get dementia It will not be because of HPPD but I'm pretty sure It will effect It. HPPD has always been as debilitating as you allow it to be I guess . For what its worth I've never considered HPPD as an illness more of a condition that swings good to bad depending on how you personally adapt and deal with it . Its a condition that seems to pop up to the forefront when things are not going good in other areas of an Individuals life (You begin to notice it More ) and then you focus on it. This I guess then falls into the realms of the neurotic and anxiety driven thought process . (been there many times) But that's Just a normal reaction to a condition that's extremely frustrating to deal with (No answers) and humans are especially driven when health Is effected. In short HPPD over the long term Is a stable condition which remains relatively constant and hasn't degenerated In any great way Both physically or Mentally. You are unlikely to develop serious mental illness because of existing HPPD (not discounting HPPD driven anxiety) But Unlikely to develop schizophrenia or dementia because of HPPD . But hey we are all different and I'm definitely not a medical professional or a physiatrist I just know my condition intimately through experience and too many years of research . My biggest fear for young Kids and Young adults is falling into the "I am crazy " trap. Man you can spend your whole life worrying about this condition and ruining your life. The last you need is Fear of conditions through ageing with HPPD . Respect to you all .Getting through HPPD would put seal team six in therapy . Get through HPPD and you can achieve just about anything . PS my Tinnitus (ringing in the ears) does seem to be getting worse overall . Not sure if its a spike of degeneration . Best Wishes Stay Strong . Anybody Who needs a chat catch me on robbiemacdonald@aol.com Happy to help . Thanks
  6. Please do not use illegal drugs and drink moderately. The ripples in the pound will eventually flatten out and your mind will find new focus and that Is the key . Nothing focuses the mind more than HPPD, you have to find another focus. Its hard but the benefits are hugely positive . Its a roller-coaster but if you ride it everyday eventually the thrill dissipates. Take care. find focus. stay positive and do not fall into the trap of believing its a mental illness or you have freaked out or you are no longer normal .That stuff in my opinion is all bull. For me HPPD is heightened sense of visual and auditory and sensory input. Which has the physical downside of fatigue headaches and muscular pain caused by the the over excitement of neurons caused by the drugs . Best Wishes. Good luck
  7. Hi Guys .Hope you are all doing well, Been a long time since I posted ."Long story short", I've been on pain medication for over 5 years for HPPD related Fybromylagia and fatigue and in my wisdom I decided to do a 5 day detox. Well the HPPD rattle was pretty big as you may imagine. For 5 days it was like walking through hell so i went back on them a decided to tirate down. I have been looking at Kratom the natural root bark pain killer from Indonesia (Banned in several countries including the UK where I am based ) However Legal in some countries and States in the USA . The reviews and i have seen hundreds looks very very good in respect to a pain killer and anti anxiety tablet . I can get it In the UK as some sites do exist that are genuine suppliers on the QT . So my question is does anybody on the site have experience of Kratom - good or bad ? Stay well guys its a long fight and the ripples in the Pond do subside over time, Unless you wake the Tiger up. Best Wishes Robbie
  8. Do you have Visual Snow 24/7 ? It's one of the key attributes of Hppd .
  9. Hi as a long time sufferer I would agree with the Drs assessment especially the acceptance Quote. I'm coming up to 40 years with this condition and you really need to get the head down and get on with life. HPPD is really just a condition opposed to an illness and definitely is not a mental illness although excessive worry and anxiety over the condition will, however, lead you down that path. Brainfog headaches and lethargy are the real demons of this condition.
  10. Hi MADDOC completely agree with you although I think as the initial visual symptoms become less intrusive (5 years say) the physical symptoms of the condition become the real enemy (fatigue,muscle pain,headaches etc ) and then i think the real fight begins as David said dealing with the ADHD and focus issues bad memory and brain fog can be hard. Diet I think has been a huge help in dealing with several of the above and for me pain killers and a muscle relaxant . Yayoe I think real HPPD dosent really go away, some have had it a very very long time It does however diminish over time or at least your focus on it does,I barely notice the visual now I would have to really focus on them (The brilliant TV after images that i used to watch floating around the room for days are gone ) the static remains but overall the original symptoms have diluted over time. You will live a normal life completely why wouldn't you ? its I think closely related PTSD your brain gets a real shock and the effects ripple in the pond for a while then it settles down and you just get on with it . Good luck you will be fine . Thanks Robbie
  11. 37 years now with this shadow keep the heads up guys fight like F--K Only got one life "it will get better" keep yourself busy really busy thats the key focusing on it is the real killer and accept its probably going to be with you until till the end . Make it your friend not your enemy embrace it! Remember HPPD has probably saved many from drug addiction Crime and a walk down the dark side . Its just a condition like a TV slightly out of tune,just a little but you can still see the picture clearly but it bothers you right Good luck guys see you at my next party . PS DBS has real potential for relief from HPPD Im on the case cheers Robbie
  12. Hi thanks for the reply, The detox already has made a huge difference , and taking a niacin flush gave me a pretty big HPPD rattle, and I've had a few of these in 36 years mostly drug related . I understand the Chemistry/Science in your reply but one thing i Know for sure is that certain symptoms of HPPD diminish and recover to base level over the years and is not permanent . It is however a long process . what I found interesting is that having such a rattle after all these years brought on by a niacin flush is suggestive of chemical release from the fatty tissues. Only suggestive and not fact , however very interesting and worth further investigation . Checkout Dr yu trails in chemical detox . Thanks Robbie
  13. Hi Guys been a long time of the forum, hope you are all good . Back2Bone is the name i have given an Idea/experiment that I am almost a year into , now I need your help with advice 36 years with HPPD I'm now 53 and ill say most symptoms have faded away into the background and basically i just get on with it . So to answer any fears that hppd will worsen as you get older (in my case isn't true) pretty much my neurological system has not diminished faster than any other persons without HPPD . However the fatigue that follows HPPD and fibromyalgia ( which I suffer ) has increased somewhat, leading me to look for some natural relief away from dihydrocodeine which i take on a daily basis 60 mg and it works to some degree, but i am keenly aware and cautious about addiction to opioids. My thinking around HPPD has always been that it's a physical condition that affects us mentally basically a hangover from chemicals that linger in the body for a long time that didn't get removed from our systems at the time of taking them , along the lines of DDt in the vietnam war and pesticides sprayed on crops over they years. To date I have lost about 3 stone and intend to lose another 3-4 stone giving me a base weight of around 10 stone or just under, my plan is to remove as much body fat as possible then gradually increase my weight with non toxic body fat to around 12 stone. I have now started a niacin detox 500mg - 1000mg along with activated charcoal and have been using the steam room at the gym and following Dr yu detox plans . On the first week of doing this detox i had the most amazing HPPD rattle , my hppd came back full blown dp/dr the works and it lasted about 3 -4 days , now i've had hppd rattles in the past from smoking pot and a bit of coke but that was in my early 20s and no where near as bad as this, so i can only assume 3 things from this 1, the niacin flushed all the dihydrocodeine from my system into my blood or 2. the niacin flushed lsd from my fat tissues into the blood . 3 the niacin flushed both dihydrocodeine and lsd from my fat tissues into my blood . Something definitely caused a huge HPPD rattle which one i'm not sure ? So i've lowered my dose of niacin to 100 mg and will proceed with caution . So my plan is to go Back2Bone nice and slowly and see if my body has been storing LSD in my fat cells. I have also removed all chemicals from my diet over the year and been doing a juicing diet and only have one meal a day along with the juice normally at night . What i don't know is what vitamins and minerals i will need to slowly lose weight to my target weight at the moment i'm taking standard daily vitamins . Is there a vitamins and mineral chart anywhere online associated with weight loss and what you absolutely need to maintain good health as you go down .? Ps i'm interested also in the topic of (coenzymate b complex ) has the trail tailed off ? Keep up the fight guys you are all amazing and you will get through it . Thanks Robbie
  14. Hi Guys my thoughts on this hppd after a very long time to think about it . Firstly I think we have to get away from the notion that we are tripping, there is no medical evidence to suggest that is the case this notion that we are in a constant trip is banded about all the time and strikes the fear of god into most people and destroys most peoples confidence and they sink to the bottom . the after effects ( the rattle ) of taking acid, mushrooms whatever , bear no relation to the actual effect experienced while on the drug . Static, afterimage, strobbing etc etc are very rarely experienced while tripping , what you are left with after taking these drugs is a neuron rattle ( a big one ) that very very slowly fades ( its the ripple in the pond effect ) . personally I think its how you a just and perceive the condition over time and importantly how you perceive yourself with the condition . Fear confidence and self belief are in the first instance the most important factors how you deal with them will shape your future . Believe you are tripping will destroy your confidence and create fear then all self belief will disappear , you will become what you fear , which is heart breaking. Have a think about what you are experiencing does it really bear any resemblance to the initial effects of the drugs ? Anyway for my part first couple years (confused panic fear and a bit para mostly about how i thought people perceived me ) kept on working through it though very tough searching for answers . after about 10 years with the occasional use of a benzo I moved on to building and developing small businesses then selling them , the hppd made me very creative and a good ability to think out of the box. 15 to 25 years managing a taxi company with about a hundred moaning, never happy, the world owes me a living sad ass taxi drivers developed one business and sold it . 25-30 years went to work for a rival taxi company with over 160 sad ass moaning taxi drivers developed an online taxi company taxisaver.co.uk sold it 30 - 35 years developing an online business hireaminibus.com which i am going to work while just been offered a position back managing at the first sad ass taxi company. Been hard keeping going as this condition has a physical side , fatigue ,lethargy and as i get older fybromylagia ( spelt wrong ) pain and weakness which came with the condition at the onset , tinnitus and my thyroid f---ed, tinnitus from hppd thyroid not sure . Always had a choice let this condition ( not mental illness or constant tripping ) scare the shit out of me or get off my ass and get into it. Fuck that sitting at home looking for answers wondering and wondering and more wondering about this condition My hppd plays little part in my life now only the physical side really remains but that manageable. HPPD will change your life but i guess its which way you decide to run with it , P
  15. Really Really good happy birthday HPPD 36 years . Take hart guys it fades into insignificance with time . Good meds that actually work . Lycra -dihydrocodiene and prozac or a benzo when needed or a combination of any of these Good for the pain and brain fog of the condition which are the physical symptoms of the condition which is 95% of the condition . Be carefull to take breaks from them though, dropping one for a few weeks then swapping about to avoid tolerance. But really believe that you will recover because you will . no amount of believing you are going mad will actually make you go mad HPPD fades after time . I'm a million miles away from the onset and have learned so much from it that I honestly think it has had a beneficial effect on me as a person in almost every way Would I change It ? nope It would be like losing a guiding light as weird as that may sound . Good Luck Guys get the head down and start living , Whats Stopping you ? Thanks Robbie
  16. DBS deep brain stimulation , very effective against depression ocd fybro migrainesand neuroplectic pain, and epilepsy 2-3 hour operation 2-3 days in hospital. The operation places two electrodes in the brain which regulates the electrical impulses misfiring , which is widely believed to be the cause of most of the above conditions. The procedure makes a whole lot of sense as hppd fall into the remit of most of the above. Ive always felt the condition is disturbance due to electrical activity rather than just a chemical condition. Thanks Robbie
  17. It is strange that alcohol is linked so much with CEV and especially that sort of classic "hellish" imagery. I know alot of non hppd users who have said this happens too. My thought has always been that when a person is drinking, their brain is taking in alot of visual info, but not processing it properly, so it sort of lingers around the next night, ready to be processed. Why it takes on a violent nature, i'm not sure.... but it is very common place. Ps i would agree with jays analogy and link with alcohol , i think dehydration has a lot to do with cevs when the system is dehydrated through alcohol or nicotine hppd kicks up a gear, has anybody noticed how drinking loads of water can calm down dp/dr ? thanks robbie
  18. It is strange that alcohol is linked so much with CEV and especially that sort of classic "hellish" imagery. I know alot of non hppd users who have said this happens too. My thought has always been that when a person is drinking, their brain is taking in alot of visual info, but not processing it properly, so it sort of lingers around the next night, ready to be processed. Why it takes on a violent nature, i'm not sure.... but it is very common place. Ps i would agree with jays analogy and link with alcohol , i think dehydration has a lot to do with cevs when the system is dehydrated through alcohol or nicotine hppd kicks up a gear, has anybody noticed how drinking loads of water can calm down dp/dr ? thanks robbie
  19. Hi ferret, what you are experiencing is normal hppd related symptoms nothing to do with schizophrenia,although its normal to think that , so you must snap out of that way of thinking which can in the long term be very damaging to your self esteem and confidence, my cevs have completely gone i guess they disappeared 18-20 years into a 34year old condition ,kind of miss them now but they have completely gone. best wishes robbie
  20. hi david- do you know what medication dr abraham is using on his new hppd trial being based in the uk its difficult to contact him to get the information . cheers robbie

  21. Hi things will get much easier over time - the afterimage will die down and anxiety will dissapate over time if you get on with your life - the static has remanied with me for over 30 years but im used to it no big deal -im going to save you many years of worry your not going mad hppd is not a mental illness and you wont lose any gognative abilites -hppd is damage to the visual part of the brain that puts strain on the eyes and can lead to headaches brain fog and lethargy - by far the worst ailment is self analyzing and worry about the condition which will only lead to obssesion about the condition - if you dont have an underlying mental condition then hppd will not get worse you wont go mad and you should lead a normal healthy productive life. ps the above only applies if you dont continue to uses drugs . cheers robbie
  22. This is my first email from dr abraham when i was enquiring about medical cannabis for treatment for hppd related pain and muscle issues fybromyligia . Dr. Abraham On Tue, Jan 11, 2011 at 2:59 PM, Henry Abraham <henryabrahammd@gmail.com> wrote: Dear Robbie: My observations of patients with HPPD using cannabis have been that the HPPD invariably gets worse. "Medical" cannabis is still a mixture of scores of psychoactive drugs, made more complex by great variability in production. I would not go that route if I were you. As it turns out, my office is experimenting with a new medical treatment which has promise at this stage. If you are interested in possibly participating in an open drug trial, please feel free to call me office. Sincerely, Dr. Abraham
  23. I spoke to dr abraham on the phone about it and i believe if memory serves me right theres a bit about it on the website on the comments i think and here is an email he sent me . Dear Robbie: I would be pleased to discuss your diagnosis and treatment by phone. I'm sorry I missed the call today. I can best be reached any time between 9 AM and noon EST at the number you called (though tomorrow I am traveling). I am reluctant to put any experimental treatment on the internet, for fear of unleashing a wave of dangerous self-medication. Suffice to say the current medication trial involves an approved drug for other conditions, and requires normal liver function tests for its use. Sincerely, Dr. Abraham On Tue, Jan 11, 2011 at 2:59 PM, Henry Abraham <henryabrahammd@gmail.com> wrote: Dear Robbie: I havent phoned him yet due to the time difference i keep missing him- it would probably be better for someone in the usa phoning and getting the information
  24. Dr abraham is trialing a drug that has shown promise in dealing with hppd does anyone know what it is apparently its an offlabel drug used for something else . cheers robbie
  25. Hi folks anymore updates with the naltrexone ive stopped didnt do much for hppd .
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