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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

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  1. 3 points
    I thought i'd start a topic where we can all contribute ways we have made our lives a little better (non medicinal). Get healthy and sober This is the obvious one... quitting drugs, stimulants like coffee, smoking etc.... Then eating healthily and working out really do help alot. Forget the past It is easy to get caught up in a spiral of guilt, anger and jealousy about your current situation. Why did I do drugs? Why did I get hppd? Why are my friends ok? Like all the mistakes and regrets in life... learn from it and move on (not easy, I know). These emotions will just feed the anxiety and hppd. Change your life hppd is at it's worst when we are stressed. It is impossible to avoid all stress, but do what you can to change your lifestyle for the better. If you hate your job, try and change it.... If you hate the city, move out. If your friends don't seem to support you, move on (the real friends will let you back in, when you're ready). These are big, life changing decisions... but hppd doesn't have to stop you making them. Grab your life back hppd can strip you of your ability to do the simplest tasks in life. Retrain yourself to do these tasks. If making eye contact is tripping you out, just slowly do it a little more each day... The more you do it, the more normal it will become. Same goes for all sorts of things... making small talk, going out and about, chatting to someone you are hot for. Your life isn't over This is a key thing to remember. The 1st months and years can be very, very tough... But life goes on. There are numerous people on here that have gone on to have successful educations, careers, relationships and families. hppd is not the end of your life, your dreams or your happiness.
  2. 3 points
    Guys, let's calm it down a bit... @TheMythos let's see less swearing and personal attacks. I haven't had a chance to keep up with this article, but it is clearly marked as "a bit of an idea"... It's not claiming to be a science paper. Let's all try and pull in the right direction. If something doesn't ring true, politely put across your counter point or just leave it alone, unless you think it is damaging to the people who might try it.
  3. 2 points
    I want to preface that my symptoms are/were severe. Ranging from mild annoyances like visual snow, palinopsia, tinnitus, headaches, muscle twitching to severe problems like sicca dryness, mental disorientation, fatigue, chronic muscle tightness causing sharp pains, GI dysmotility and intestinal pseudo-obstruction. I basically developed a brutal form of HPPD. After some recent GI-related problems, I was tested thoroughly by a doctor looking for answers. By stroke of luck, I tested positive for something that explains very well a large portion of my symptoms. I have positive antibodies for Ganglionic ACHr (acetylcholine) alpha-3 receptor. Here's a paper with more detail: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3764484/ I'm not really sure how many others here would test positive for the same receptor. It has been studied, and while very rare, does not accurately describe and represent HPPD-type symptoms of visual distortion (although I believe mood related problems are connected). But, what I realized for the first time is that it's not just a problem of receptors not functioning properly, but also my immune system is actively involved in the process of disrupting my neural communication. Antibodies connect to the receptor and therefore block my ACHr from working properly. So, any discussion of my receptor malfunctioning is somewhat moot. The receptor is targeted by immune system to block its function. Fuck you immune system. Don't know what this means yet, but while I'm still working to make connections to all sides, it does explain why Prednisone (immunosuppresive therapy) has been effective for me in the past. EDIT: Don't know why I forgot, but the auto-antibody for acetylcholine actually DOES have implications on the visual system. As shown in the paper, people with this antibody has impaired reflexive pupils causing photophobia. Bingo.
  4. 2 points
    The Visual Snow Syndrome study carried out by Dr Goadsby is close to starting a treatment phase of research . Yesterday Jen Ambrose posted an update ongofundme : https://www.gofundme.com/visual-snow '' Hello Eye on Vision Supporters!I'm sorry that there was such a long delay in hearing from me, but I sustained an eye injury in Feb and am only recently returning to limited computer use. I do have an update from London to share with you. Patients have begun to be qualified and scheduled for testing. Scans are scheduled for May and June at King's College. This is an important phase of research, because what is learned from these scans will determine how we enter into a treatment phase of research. Without this phase of research, we will not be able to proceed to medication testing. With that being said, I've been approached about funding for Dr. Puledda's salary for another year. Dr. Puledda works under Prof. Goadsby and is the primary doctor assigned to the Visual Snow research at King's college. As stated in previous updates we need approximately $70,000 USD per year to employ her. Currently we have only raised $20,000 USD which is a far off sum from what is actually needed to secure her. Almost all of you reading this who have VS have likely undergone an MRI. You have likely seen the very high bill to your insurance, or you have paid out of pocket. It's not uncommon to see bills over $1000. We are very fortunate that King's College covers all of these costs towards VS research. We need to assist them though by being able to pay Dr. Puledda for her time and efforts on our behalf. We would love for you to become a monthly donor and help us achieve our research funding goals. You can sign-up as a monthly donor here:http://eyeonvision.org/donate-to-the-eye-on-vision-foundation.htmlThank you, Jen Ambrose Please everyone make donations!! I know you guys got visual snow syndrome from drugs ( just as the forum info section itself says : drug induced visual snow syndrome ) but the symptoms are the same . A cure could be on the horizon if we start making donations!!! I've posted links about few other rare diseases that have found cures( or are close to finding one) purely by making large donations and not giving up . This is what patient determination and donations can do : https://www.hippocraticpost.com/innovation/gene-therapy-nervous-system-disorders/ https://www.technologyreview.com/s/603832/determined-parents-are-moving-the-needle-on-gene-therapy/ there are some other articles I came across a while back but I don't have the time to search for all of them again . However I hope that the above articles will inspire you to make donations for the visual snow syndrome research. It's the only option we all have left now !!!
  5. 2 points
    When I was a mere thirteen years old and 1 year into full blown HPPD, two ex drug users came and gave a lecture at school and showed a film of what can go wrong with hitting up intrevenously. It was rather graphic, showing users whose veins came stringing out of their arm and infected ulcers. It scared me terribly, though I was never a drug needle user. I had already scared myself away from drugs because of HPPD that basically ruined my life as far as I was concerned then. But the fear element was a powerful teacher too late for me. At the age of 12 in 1969, drugs, especially psychedelics were glorified in the Rock music world. Teachers, parents, law enforcement all warned us of the dangers of using LSD especially. This was when little was yet known about long term harmful effects. We were warned but encouraged through a youthful rebellious culture. Had there been the long term experiences we now know of, perhaps some of us would have heeded the warning. The warning label should read, if you take this drug there is a real chance you will stay high for the rest of your life! And so...I would like to see such a warning for the younger generation now. When I go back in time and think of my responses back then when I was warned, I thought that there is always a remedy, always a fix. But this is not always true. This is the reality warning that folks need to hear before they consider using psychedelics. It seems that these mind altering drugs open pathways that may never close again. It is like a lost innocence. I think the most important thing I can do is to warn others not to take drugs, especially psychedelics. Can you recover with strict diet and lifestyle? Perhaps so, after time and much effort. But perhaps not. All this being said, I think it would be very worthy to find ways to warn others. Perhaps to go into schools or even make ads online via social media. Were we tricked by the offer of cheap thrills so drug pushers could make money? Were we encouraged by musicians who made us feel we belonged to something new happening? There are many very serious questions. Why we follow harmful trends. Why we gample our one and only life for a few hours of pleasure. I don't think I can answer without taking serious responsibility. Back in the day I introduced others to drugs too. I'm sorry. It was foolish. Many in my high school have suffered terrible fates due to drug use, including suicide. If you are using psychedelics...., I would like to scare you with reality. There is a huge risk and some of us were so very young to take such stupid risks! I'm wanting to speak out and speak plainly. Maybe some young soul will be forewarned enough to never experiment. Experiment? Our youth became the world's guinea pigs? Love and peace to all. Any ideas in how to warn our youth?
  6. 2 points
    First - stop smoking weed. It isn't helping. Second - it would be beneficial for you to stop researching this and focus on overall health, mental and physical. I know you want it to go away. We all do. A bunch of us researching this on the internet trying to put the pieces of a puzzle together isn't going to bring any answers until some serious funding and medical research takes place. 2 guys in a lab doesn't mean shit until other researchers get on board and do multiple randomized double-blind peer-reviewed studies with sufferers and non-sufferers participating. Third - figure out what supplements may help and try them, along with exercise, healthy diet, meditation, yoga, tai chi and distraction. Try to socialize and do fun stuff even if you don't feel like it. Force yourself into the world. The best thing anyone suffering from HPPD can do is try to get their stress and anxiety down. Most symptoms should start to go with time as long as you live healthy and stay away from drugs. I know it's hard being sober but you don't really have a choice anymore unless you want this to get worse over time.
  7. 2 points
    You've been posting this for weeks now. Why not just post it when you post it.....
  8. 2 points
    I've seen some threads on this forum decompose into insults and shouting matches. We all have opinions, perspectives, experiences, and information we've obtained from various sources. If someone posts something you don't agree with, pisses you off, or seems like misinformation, please reply in a constructive and courteous manner. Before you post, think about what you might say if you were talking to the person face to face, and don't forget to be kind. We're all struggling with a difficult disorder. Remember, we all have the goal of being well. Let's help each other get there. Thank you.
  9. 2 points
    Success story After 4 years; my hppd is finally gone for real this time. Will post more on this later
  10. 2 points
    Danjoking, you're right. I apologize for my behavior. The above response by mane isn't worthy of a response. He's clearly on a tear. I pray for his, mine, and all of our healing. Good night. Hope you guys get over this illness in due time.
  11. 2 points
    My acceptance that this condition is not the end of the world.
  12. 2 points
    There's no question, it does get better. Never underestimate your ability to heal and to adapt. Life is weird, all we can do is the best we can do.
  13. 2 points
    Hi! Welcome here edguy. Sorry for hear that. In my experience, since I've been sober for one year now. (I tried to smoke ago one year, and I relapsed so bad), all my symptoms are really better, to the point I can't notice them. I hate the fact I've forgotten how I used to ''see'', but I love to get fun and be happy again, since I've accepted my new ''reality". Give it time, and stay away from drugs! I'm 99 % better, I promise I'm not liying. Only tracers. No dp/dr or anxiety anymore! Cheers & bless. Give it time to see how things can going withouth any meds and withoung put more chemicals on your brain First, try to let the body recover on its own. Then, you could see for any meds help, if you need it. Try yet to don't put any more chemicals in your brain first and try to stay away from drugs, please! it's the best advice I can give you, from my own experience. You'll be better. Take care, and cheers it up.
  14. 2 points
    -My grandmother died October 13. We were close. -Nov 3, quit cigarettes, got on Nicorette spray. Quit nicotine November 15. -November 20, start drinking coffee all day every day, too lethargic from quitting smoking and felt like I had a constant dopamine deficiency. -HPPD got so much worse after quitting smoking. It's been 3 months, no urges or cravings to smoke whatsoever. Images got worse and became more body-centric. I'll see my ribcage in my head, my stomach, feel weird and trippy sensations. -I'll fluctuate between feeling horrible for a week or two to feeling 70-80%, one day I felt 90-95. The fluctuation and plateauing is worrying me. I just want to get better and stay at a constant 80%. I could live the rest of my life comfortably at 80%. -Sleep schedule the past 2 weeks has been insane. Staying up all day and night, and the next day to fix it. Staying up for 2 days straight. Getting 4 hours, 6, 12, 4, 6, 4, you get the picture. I feel when I'm at a consistent week at 8 hours a night I'll feel better. -Fixing my diet because I have GERD. Eating less, better, cut out sugar. -Attempting NoFap. -Applying to jobs. Looking for something that I can handle. ******** My life is still very, very stressful and there's a lot of family stuff going on that I didn't mention. I feel like if a lot of this external stress diminished my symptoms would get better. Sometimes I feel like I need a 3rd party perspective because I can't see all the issues at once. Hope you guys are doing alright.
  15. 2 points
    Did you shoot your load into your eye?
  16. 2 points
    I'm here to bring you hope. After 4 years, my dp/dr has almost completely gone. Anxiety is gone. I'm fighting with depression (because I've lost lot of time and have family problems.) and OCD. I'm good, because, before HPPD, I wasn't so good either. I mean, of course I wish I hadn't had hppd, but I wasn'tt a particularly mentally healthy boy before I had my HDPD. Take care and cheers.
  17. 2 points
    It will definitely improve. The fact that your episode was induced by Cannabis would lead me to believe that you will probably recover better since its not such a hard hitting compound neurologically speaking. To say how much youll improve no one here will be able to tell you. You will have to wait that out and see. Definitely do not try and smoke weed or any other drugs even if it improves.
  18. 2 points
    I posted an article a while back about Robert Sapolsky and there might be some relevant information in there pertaining to this subject. You can find that whole post here: http://hppdonline.com/topic/5604-article-on-robert-sapolsky-stress-the-brain-etc/#comment-35473 The biggest thing with all this seems to be how much stress you were under prior to, during and after your inciting incident that gave you HPPD. It seems anxiety is the real killer in all this as it completely compromises your brain's ability to fight off disease and heal properly after injury. Here's a good quote from the article above on this topic: "The hippocampus is the most glutamate using part of the brain. This is so because learning and memory are so vital to survival that this excitoneurotransmitter is used liberally in this area. The energy crisis to the neurons created by excess glucocorticoids means the neuron doesn’t have adequate energy for reuptake of calcium and glutamate. It is through this lack of cleanup that these chemicals hang around longer; thus increasing calcium release into the cytoplasm, which produces enzymes that increase free radical damage to the cytoskeletal membrane of the cell, thereby bringing about cell death or apoptosis. To protect themselves from excitotoxin damage the neurons produce adenosine, GABA, taurine, heat shock proteins, antioxidants, feedback inhibition of Ca++ flow and increase glucose and lactate uptake to improve energy levels of the neurons. However glucocorticoids interfere with these defense mechanisms also." As Dasitmane says, if HPPD is cell death of some sort whether you recover depends largely on how much damage occurred in the first place. If it was merely the dendrites then you can surely rebuild, but if the cell body itself suffers then you're less likely to experience regrowth. But again, much of this depends on the type of drug, how much, anxiety, proper recovery, where in the brain or body the damage occurs, etc. I think it's safe to say that as long as you refrain from doing drugs again, live a healthy lifestyle, eliminate stress and do all the things necessary to promote growth inside your body that you give yourself an excellent chance at a near or complete recovery. I know in my case I've had all kinds of health issues after getting HPPD (everything from benzo withdrawals to anxiety to sugar addiction to thyroid issues to digestive complications to depression, heartbreak, you name it) and yet I've never had any major setbacks that I haven't been able to recover from. It's the exact same theory as trimming a plant or a flower: If you just clip the buds or part of the stalk it will grow back again and again, but if you start damaging the root then you risk killing it for good. In this same vein, nature knows which direction to move for a reason. Flora grow towards the sun due to photosynthesis and dendrites grow towards other dendrites for neurochemical benefits. I think the idea they would grow back and have no idea where to grow or connect to doesn't make a lot of sense, but this is just my opinion on the matter and I could be dead wrong. A few more paragraphs on this topic: "For our growth, development, health and fulfillment we need stimulation rich environments...what this stimulation amounts to would differ between us monkeys...some would like more toys, others more playmates, others would want a bigger playground etc... Big Fun is an attempt to generate more stimulating conditions in which growth is possible. Our brains form a million new connections for every second of our lives, revealing the huge importance of our everyday experiences in making our brains what they are. Boredom makes us stupid--the richness of our environment affects our brain structure. With a more stimulating environment our brains develop denser neuron growth and increase the amount of certain synaptic proteins that the brain uses to relay messages between neurons... When it comes to brainpower they say you either use it or lose it. Fred Gage of the Salk Institute for Biological Studies studied the hippocampus, a brain region involved in learning and memory and skills and found that activation of NMDA receptors affects the survival of brain cells. This study in mice suggests that the survival of newly formed adult brain cells depends on the amount of input they receive, via NMDA receptors - proteins that sit on the surface of brain cells and help them communicate with each other, suggesting that communication is essential for neuron survival. http://www.newscient...-job-to-do.html... This suggests that our interpersonal world, (how well we bond and communicate with others, whether we are repressed and if we easily forgive or hold grudges,) might also have a parallel in how well our own neurons communicate with each other and thereby impact the lifespan of those neurons. This resilience of neurons that communicate well with each other might also be key in how we each respond differently to stress and PTSD. Brains that are repressed or weak in self-communication might be more vulnerable to the effects of glucocorticoids and to neuron damage in general."
  19. 2 points
    I don't know when I actually aquired hppd because once I started dosing there was rarely a week that went by that I didn't dose. I had some suspicious symptoms after my first dose so let's say it started there. That's roughly 45 years ago. However, I didn't realize it wasn't going away until I stopped dosing. That was roughly 39 years ago. I'm saying all this because I have a simple message. Even though I have this disability, life is wonderful and I feel like every day I get to live is a gift. I've always felt that checking out wasn't an option. Life with hppd can be difficult but we have this incredible opportunity to experience life. We're the matter that woke up to experience whatever "this" is. I realize I've said this before, but I thought it might be worth repeating.
  20. 2 points
    The non profit is up and running. Starting a seperate post with clinical tirals and donate information. Took me long enough but I'm a persistent bastard. www.neurogroup.org
  21. 2 points
    The question is not random at all. It is a great one. (I am going to speak to those without significant DP/DR, but the individuals that have lasting altered perceptual disturbances that at least in the early part of the disorder result in significant distress.) I started talking on the original forum in 1998. I was less than a year into the disorder, and happy that somehow found a name for it (Thanks to the old HPPD board by Andrew). So, I know there are many who have had HPPD for 40+ years like MadDoc above. I can say that the vast majority of them have adapted to the symptoms, and some of us *cough* may be better off with HPPD having affected out lives vs. death or the other few awful outcomes that accompany substance abuse. How are the Visual symptoms? Do I still have the same visual symptoms? Generally, the symptoms do reduce with time. I do take clonazepam, but admittedly I am unable to honestly say if it has caused me more trouble than if I had not started taking it. I think there is a place for benzodiazepines, and a meta-analytical look at posts on this message board could yield an interesting paper or an easily designed research project could shed light on some empirical data on this question. For me, it was the thick static (a severity that I saw figures and cartoons in the spinning pinwheels of the static when I closed my eyes) that prevented me from driving at night and my night vision made looking at the sky impossible and all but the brightest stars and planets would be distinguishable. The purple afterimages at night would take over my vision if I stared off into space. It would be followed by a neon green "veins" in the shape similar or = to Kluver shapes. I can tell you that during times when I did not have access to Klonopin, the anxiety and body feelings are far worse than the visuals, but the visuals are worse as I would expect because in a withdrawal the brain has not had a chance to adapt to the normal receptors. However, my vision would only be an issue at times it would be for any person with or without HPPD when they would be more aware of their vision (e.g. driving at night on a two-lane road with oncoming lights, staying up too long or looking through a telescope. Excessive glare.) my symptoms have not changed. Truthfully, they are worse, but (NO PANIC) I am certain they are the result of my vision actually getting worse and I need glasses. But, I have been putting off going to get my eyes checked. Iff in one month I haven't made the appointment and can report to anyone about it, please call me out on it. Right now, I have trouble with street signs, reading text close up and my vision was impossible to determine a "number" when I was last tested in 2004 because of the visual issues, and I make sure to take my medication before getting my eyes tested for when driving (and at least I pass these for now). (I have a lot to say, so I will try and stay on topic the best I can, but you wil get more than you asked as a result.) Perception of our environment is one of the strangest and most interesting parts of PSYCHOLOGY that I know. I can go a few days without my symptoms becoming a thought that reaches my conscious awareness. So, did I see haloes, walls move, and other visuals during those few days? I would say I saw them just as much as I was consciously aware of the birds chirping around me (they do all the time, but how often do you notice them?) that I had absolutely no real recollection of. We can attend to only so many things, so if I am having sex then I can tell you with 100% certainty that at this point I don't think about HPPD during or after! When I am writing on this message board, I can write for a few hours and talk about the symptoms but not be occupied by my own. However, just as I can now -- I look away at the wall and I see the monitor after image, the wall is moving upwards, everything is still in ghosted vision, Haloes and afterimages follow everything I see -- have these visuals they do not cause me distress. I am more concerned for those who are going to get HPPD and for the individuals who received it only after a few uses and for the people where other disorders interact with the mechanisms of HPPD to make it more difficult to accept that I am my own. In general, I know people in almost every class of profession and life but notably, none are jet pilots or dentists and also not aware of any of us being a military sniper, and these others where perfect eye-sight is required are doing very well in their lives. When they are not, the cause is usually linked to anxiety and depression that exist with HPPD and experiences of depersonalization or the visuals staying distressful can be an issue without addressing the other disorders. I have ADHD (which is finally getting research to support it as a biological brain disease, so I don't need to validate it but I am 38, have 4 papers in medical journals but live in my family's basement) which is the reason I have been gone so long. I designed the PHP front-end and MySQL backend for the Depersonalization research with Dr. Simeon in a hyperfocused binge and I designed and published research because either I was illicitly taking or finally prescribed Adderall to provide me the ability to complete a task). I also have a "lasting disorder" but it is "cured" which is my right leg's tibia (shin) had a complete spiral fracture and fibula broken like twigs and I almost required amputation, but instead, they used a scalpel to start a 25cm or so cut along my calf and then used surgical scissors and cut through my fascia to prevent compartment syndrome, put a rod through my knee cap down to my ankle and screwed my leg together and I had to wear a wound vacuum 24/7 for 4 or so months until the wound reduced dramatically in size (three times a week I would have the sponge changed by specialists) and then I could get a skin graft to be the fine leg they saved. I was very lucky. However, It causes awful restless leg symptoms (all of the little nerves slowly coming back, and a lot of feeling still doesn't exist on that area of the skin that is a giant scar) and standing for a day will cause me to feel like my knee is locking up, I can't go up and down stairs without using my arms in that case and I have to rest for a day (I can manage the pain if I am not moving, but if it gets too bad I do take tramadol and I will take it to sleep). Before this, I was taking 10-20mg Oxycodone every4-6 hours including when I would suddenly awake as it wore off. Eventually, I asked to step down and I am only telling this story because I am an Addict, and telling your doctor to reduce your narcotics is something I am proud of. However, I am still taking a combination of meds that we were reducing in small steps (until my father was diagnosed with brain cancer and so far we haven't decided it is good to rock the boat) that a substance abuser would consider a dream to have each month: d-Amphetamine, Clonazepam, Tramadol but I can promise my opinion of these are completely different. Do I still forget my keys and it has been over 2 months and I have yet to get a replacement to my driverse license I lost somewhere? Yes. However, I did keep excellent records and cared for my sick father in a way that I managed his medications, condition where nobody would have said I was inattentive. It is just how my brain attends to things, so like HPPD it is part of my biological situation (but we can learn to adapt and even take advantage of some of the things. If hearing 1000+ stories from people with HPPD makes me an expert on the topic, then I can tell just from your last sentence tells you already understand our best defense. Humans are generally very resilient and adapt to a lot of weird conditions. I will may not have daily leg pain, but I still have a titanium rod and I wouldn't try competition cycling, and I can't finish a book until I started taking meds so I can function in our world and did I overcome ADHD? I am getting closer, but as my psychiatrist said, "Your brain is special. That is all you will get for my diagnosis on you. I fill out numbers for your insurance." So, in my opinion, you are going to do fine. Very early on, about 1 year into it I was going to stop looking for my own cure and worrying if it will go away, and it enabled me the freedom to study it and observe it without excessive bias towards seeking a magic bullet cure and be realistic about what the challenge will be. Your only real limit is not landing jets on aircraft carriers at night. - dk
  22. 1 point
    This also sounds like depression. Sometimes depression can make you hyper aware of your emotions as the brains bombards you with negative messages. Another symptom of depression can be a feeling of being emotionally numb. I guess depression and DP/DR are like circles that intersect. Depression is pretty common in people who have recently given up drugs and/or alcohol. It takes a while for the brain to feel good in an unaltered state. I'm no expert on any of these disorders but, like most humans, I've gone a few rounds with depression. It's a tough opponent.
  23. 1 point
    No sorry man , I meant it’s happened because weed and alcohol, I have been sober when I noticed i got hppd 2 month and half
  24. 1 point
    I put blueberries, strawberries, blackberries, and a banana into a blender. Add a shot of hemp oil and some walnuts, top it off with almond milk, run the blender for a while and bingo, breakfast. Works for me.
  25. 1 point
    Best thing that helped my anxiety was diet. I'm convinced I had underlying inflammation which triggered anxiety my whole life and played the key role in getting HPPD. Once I went paleo, stopped eating processed foods and added sugar, my anxiety completely disappeared. Recently I have been diagnosed with inflammation in my stomach and what do you know, anxiety was back again like clockwork. Also, meditation and therapy worked wonders for me. If you do a combination of all those, plus exercise and stay active socially you won't need pills. Whatever you do, if you do decide to go the pill route, stay away from benzos unless you're really disciplined and can handle it.
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