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Granite

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Everything posted by Granite

  1. Yeah, these guys are right. And, I know what it's like to hear you should quit drugs, when you're still used to doing drugs -- but, after you've been sober for a long while, you will not feel the same way about it...I promise you. Life goes on, drugs are less appealing the longer you're clean. You just went through a really traumatic experience too. If you take this seriously now, and while you're still young, you have the best chance for a full recovery. Even weed, unfortunately, is going to provoke your symptoms. It's a psychoactive substance.
  2. I often go back in my mind trying to recall the event that initiated at the onset of my HPPD symptoms. I can recall the same event happening both times my HPPD got worse. The first thing that happened before I got HPPD symptoms was seeing flashing of light in my eyes while they were closed. Blue streaks of lightning, like a storm going off under my eyelids and inside my brain. I vaguely recall an uncomfortable sensation of muscle constriction that accompanied this, really kind of felt like I was under a spell of the storm. Did you have this when your symptoms started? It's medical term is called aura, but I don't recall getting a migraine with my aura visuals.
  3. What are your sexual habits like? Do you masterbate everyday, multiple times?
  4. I know, man -- the struggle is real. I had no idea how long it would it take either, but somewhere along the line I made a commit to myself that I would see this through to the bitter end no matter what happens. There were a lot of dark nights I wanted to cancel that commitment, but I made it and I get to smile to myself now and be damn proud of it. Obviously, I would never want to go through something like this again, cause it's so damn tough, but I have this gratification for having been given one of those rare moments to become aware of my health and how to take control of my poor lifestyle habits. You know so many people go through life never having those breakthrough moments and just become frail, and sickly. I'm still young in my early 30's and have a chance to take this change with me -- you know...But, definitely keep going with the good diet habits. I know 15 months is nothing to sneeze at, and in hindsight it's shocking that it could take 6+ years for my nervous system to heal the mood swings, but they did eventually heal and these once monster mood swings, over time just became tiny temper tantrums that hardly bother me; and I can spot them immediately as before I would get completely sucked in by the depression/suicidal swing. I'm noticeably happier and more social everyday now. Like I said, I feel like a young clean teenage me at moments. I also had some skin issues through my ordeal. Maybe a light case of psoriasis, I definitely have severe dry skin issues, flaky scalp and skin...also much improved and almost completely healed. The sweating is one of my biggest problems, keeps me feeling overheated at times. Really bizarre feeling to have cold hands/feet, and be unable to sweat. Only recently did I notice that improved also. I believe in much of what you talk about with poor lifestyle habits and stress. I remember being young and forced to wake-up early to go to school everyday, exhausted on 5-6 hours of sleep and always feeling in overdrive. I never ate fruits/veggies, never drank water, never slept well, always stressed out...I guess I was predestined to get something like this when I decided to start smoking herb and other drugs (ecstasy, lsd, shrooms) all by the time I was 15. I believe the gut houses the majority of our neurotransmitters, and it makes perfect since when we aren't taking care of the gut, that we can develop more mental issues. Simply taking probiotics can heal depression (https://www.psychologytoday.com/blog/evolutionary-psychiatry/201602/probiotics-depression). So, like you, I knew I had to work on this area and I will never neglect it again for the rest of my life. We were never meant to eat processed garbage all day.
  5. I've mostly constantly improved, like yourself, at a steady rate ever since I woke-up one morning in a complete fog with intense trails. I had HPPD symptoms like anxiety, depression and visual snow before hand since 17 years back, but nothing like I had to deal with that day 6 1/2 years ago. But, since then it's been a steady improvement, and only a couple things I changed seemed to increase the speed at which I healed and only at a very minor rate of improvement -- quitting smoking was big, and also changing my diet. I actually removed meat and dairy, and avoided high salt and high fat things for a while as they seem to provoke my symptoms. Since about a year ago, I eat meat a couple times a week, eat eggs regularly, and occasionally cheese, but I still adhere to a strict avoidance of caffiene and coffee. Lots of vegetables, rice, beans, nuts, and WATER. I know what you mean about having trouble hanging in there! We just gotta take it one day at a time, it's the only way not to get frustrated and do more harm. Whenever I have a rough day I just remind myself this flare-up will pass and I'll feel OK soon. I really had to be very patient when I was going through intense mood swings (severe depressional swings) just from things I was eating or if I didn't get a good night rest. So, I know how you feel buddy! I love hearing about others theories as well, and passionflower is one I've never heard of! Have you ever gave it a shot?? I'll have to look more into Beverly Meyer that's also a new name to me. Your theory about the brain is as good a guess as I've heard. We gotta keep trying to figure out the mechanism. But, at least your right about the recovery, even while most people struggle to find help, almost everybody who quits the drugs, smoking, alcohol and all the things that provoke the heightened nervous system seem to improve eventually (at a snail's pace). Having patience is so vital to having success in recovery. Basically, every few days to a week, I notice my trails are just a little bit less intense than before. And, that's been the judge of how my overall improvement is, because like I've said, as the visuals improve, the rest of my symptoms do as well. Do you have any problems sweating? Have you ever had to deal with hives? My fault if my response is a little less cohesive this time, I had a rare horrible night sleep and feel like a zombie right now.
  6. I'm actually doing really well. Almost completely healed from a severe case of HPPD that has gone on for 6 1/2 years. I had to straighten myself up completely with no shortcuts (that means I quit all drugs, smoking, drinking, caffeine), but I'm happy to say I feel pretty close to my young teenage self again -- minus the visuals and occasional flare-up of physical symptoms. I was the exact same way. I had reactions to practically any supplement I took; even simple ones like Vitamin D or Omega 3 like you. It was mostly this instant tension that rushed through me, a kind of chronic muscle tension that wouldn't ease up. I felt pressure on my chest for years, making it feel like I wasn't getting enough air. Through all the supplements I tried, I did find a couple supplements that initially seemed like magic pills. I've talked about these before, they are: Bilberry Root, Dandelion Root, and Wobenzym. At first, I mean within 10 minutes, when I take these I feel an instant lift of all my symptoms except the visuals, everything else is relaxed, no anxiety, mood is better, just terrific....but for reasons still unknown to me, once the supplement wears off after about 24 hours, my symptoms of tension return with a vengeance, and they are worse than before I take the supplement. My blood vessels would dilate, my skin and mouth dry out, joint pain and fatigue hit, and this awful depression and suicidal feeling clouds over me and it takes like a week for all that to calm down. So, I really didn't have a lot of luck with supplements. I eventually just decided to go a la natural and let my body do the healing, and it's worked for me even though it requires immense patience. I wouldn't say I'm resigned to living with it, because it's practically gone and at this rate I expect all my symptoms (including my visuals) to be gone within a month. I still get the itch though to try and figure all this out, and I've learned a lot -- I feel like I'm really close to knowing my mechanism. Here's what I know thus far: There's 5 supplements/medicines that have helped me in total. The 3 supplements I mentioned about (Bilberry, Dandelion, and Wobenzym). 2 are pharmaceuticals (Prednisone and Finasteride). All 5 have interaction with neurotransmitters, specifically GABA-A. Alcohol also temporarily relieves my symptoms. Alcohol is a known GABA-A Receptor Positive Allosteric Modulator -- Benzo's and Barbituates are also in this class. When I drink alcohol, initially it reduced my symptoms dramatically especially my chronic cholinergic hives. As time went on, this no longer worked (I assume the chronic use of Alcohol changed the receptor dynamic by this point), so alcohol started to become a drag on my system as well. I cannot tolerate opioids either or anti-histamines; or anything related to such (Singulair or leukotriene inhibitors) provoke star-burst visual reactions and blue flashes. I also have a positive test for the ganglionic alpha-3 acetylcholine receptor (AChR). It's an antibody test done through Mayo Clinic that effectively tests for neurological autoimmunity. So it is possibly that my immune system is attacking that specific receptor, blocking it's communication and leading to dysfunction within the rest of my nervous system and neurotransmitters. Basically, this makes me positive for Autoimmune Dysautonomia. If you're interested in running this test, have your doctor run this from the Mayo Clinic --> http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/89904 . I've also had a positive sweat chloride test done through a neurologist as well, double confirming my autonomic dysautonomia. EDIT: I should point out, since I'm discussing the connection with GABA-A that I had already read this directly from the wiki page about Illusory Palinopsia (medical term for afterimages). "Illusory palinopsia is a dysfunction in visual perception, presumably related to diffuse neuronal excitability alterations in the anterior and posterior visual pathways.[19] Because of the drugs that cause illusory palinopsia, 5-HT2a receptor excitotoxicity or a disruption of GABAnergic transmission have been proposed as possible mechanisms" https://en.wikipedia.org/wiki/Illusory_palinopsia#Pathophysiology
  7. K.B.! I feel your pain, brotha. That person you're speaking of was probably me. I tried 100s of supplements, and only a few really did some awesomely positive or negative things. That licorice root did the exact same thing to me. Instant anxiety, tremors, visual tracers increased, hyper-awareness...it was 5 years ago ago when I tried it, and I still remember it. You know, I've read a couple of your posts and always kind of said to myself, this guy (K.B.) has symptoms kind of like mine. I think I'll peek through some of your posts and see if I can find some connections for us. I'll do this soon cause I'm feeling lazy right now, hah
  8. I also react to opiates. The first couple times, no problem, then all hell broke loose and visuals, muscle tension, tingling, tinnitus blew up.. Not recommended.
  9. Quercetin is awful for me. Rutin is wonderful. Well at first. The thing about Wobenzym (Rutin) is that for the first 24 hours, I feel amazing. Then, I have some kind of rebound effect. My blood vessels dilate, my sicca dryness gets far worse, and then I have severe depression. Quercetin is nothing like that. It just worsens my mood right away and makes me feel awful. Do you have anything on licorice root? That was the only other supplement I tried that immediately made my visual palinopsia worse, bad anxiety, tremors, and panic.
  10. I didn't notice your Thiamine thread. Glad you found something that's working great for you! I will definitely look into it. In the past, I had some very interesting reactions to B-vitamins; specifically B6 seemed beneficial (just for energy), and B5 actually caused my hives to break-out more in higher doses (must have been doing something with acetylcholine). I do remember trying Thiamine (not sure the dosage or type), but didn't have anything memorable happen. Maybe I will try it again. I also found other supplements that were amazing for me (I mean complete reduction of almost all symptoms) within 10 minutes: Bilberry, Dandelion Root, Wobenzym. I knew they all had action on the nervous system, but it took me a long time to find a connection between all these supplements, and it turns out these are all connected as flavonoids. And, flavonoids are major GABA(A) ligands. https://www.researchgate.net/publication/234035096_Flavonoids_as_GABAA_receptor_ligands_The_whole_story. Not all flavonoids ar beneficial for me though, I actually have a very negative reaction to Quercetin. But, I've tried other drugs like Finasteride which also have action on GABA(A) and cured me temporarily. EDTI: Oh, I don't want to forget alcohol which was a miracle for me in the beginning (GABA(A) receptor postive allosteric modulator). Interesting though that eventually alcohol stopped being as effective, and I noticed alcohol creates thiamine deficiency.
  11. 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.
  12. How does drinking affect you? When I had severe tinnitus early on, drinking helped reduce that and most of my symptoms. You may think that's bad advice, but if I now understand why drinking was helpful, it could be because alcohol is a GABA(A) receptor positive allosteric modulator. It functions to enhance GABA while also inhibiting glutamate. Do a search on "GABAA receptor positive allosteric modulator"
  13. YES! I'd bet money it's the magnesium. For years, I tried to understand why Epsom Salt (magnesium) baths were so bad for me. I suffer from very bad dryness, skin, hair, sicca symptoms (dry mouth, eyes).. I've found others who claim to have "sulfate intolerance" but no one has really gotten to the bottom of why some people can't tolerate Epsom Salt baths. My theory is that the heavy load of magnesium plays havoc on the nervous system through a mechanism I don't fully understand yet. My symptoms EXPLODED after having an Epsom Salt bath.
  14. Fascinating. One of the first symptoms I got from HPPD was hives (cholinergic urticaria) from sunlight, heat exposure. I initially tried to use anti-histamines, but I produced a paradoxical reaction and broke out in more hives. I quickly found out that alcohol could control my hives. So, I drank heavily for a long time, until my symptoms kind of shifted. I was sweating a lot early on, hot, and such... then I started getting cold, not sweating at all, and my hives never came out. I have now learned that alcohol works as a GABA-A receptor positive allosteric modulator, which is the first time I've been able to explain why alcohol solved my problems (see this: https://en.wikipedia.org/wiki/GABAA_receptor_positive_allosteric_modulator). Over time though, alcohol must have desensitized something else, that made this far less effective and started causing other immune-related symptoms. I also took Finasteride for a while, which temporarily cured me entirely of HPPD. I have now discovered finasteride (which acts of 5-alpha reductase enzyme) has properties that increase the action of GABA(A) receptors, and it's very plausible this is what cured my case. EDIT: I forgot to mention the photophobia thing. When I started I had visual snow, but I had no photophobia. It wasn't until years later when that shift took place from hot sweating and having hives to cold not sweating and no hives that I started to develop the photophobia!
  15. Was this me? If not, I actually took Finasteride for hair loss, and all my HPPD symptoms were gone within a month. I was living the best life I'd had in years, but it didn't last long (about 1 year). Side effects from Finasteride started to become a problem. I was increasingly retaining water and getting sicker often, plus sexual side effects. I've researched this a bit, and what I've found is Finasteride has immuno-suppressive properties. But, the bigger connection I made was through this paper: http://www.ncbi.nlm.nih.gov/pubmed/16834758 "Recent preclinical data indicate that the subsequent 3alpha-reduction of DHT, DHP and DHDOC produces steroid metabolites with rapid non-genomic effects on brain function and behavior, primarily via an enhancement of gamma-aminobutyric acid (GABA)ergic inhibitory neurotransmission. Consistent with their ability to enhance the action of GABA at GABA(A) receptors," I have no doubt the action on the GABA-A receptors was the reason for my improvement. It's already been discussed that palinopsia arises from disorders of GABAergic transmission.
  16. Visual! Hey, bud. I was actually thinking about you recently, I want to get your opinion on something else, but I need to put it together first. The testing was whole exome sequencing. It was explained to me that it catches 85% of the genome, the most likely places for defects and such. I had my test done by Transgenomic, and it was ordered through my geneticist. At the time, I qualified for a special program they were offering that got me a discount because it was a relatively new database and program. You can check with them to see if they are still running it, I believe it's under $1,000. The sequencing tests many many more genes. I actually came up with a couple other unrelated defects. You can request whether you want to know about all defects or just ones related to your symptoms. My advice is to find a geneticist and have them order through Transgenomic.
  17. Gaz, strangely getting the flu was a part of my HPPD worsening. Strangest experience, I woke up 2 days after a hard partying weekend and my feet felt like frozen bricks, and I have never experienced that before. I had a fever and severe muscle pains for several days following.
  18. Curious to know who else here experiences involuntary muscle twitching...
  19. Fascinating about the allergy medications.. I thought I was all alone on that. I started having problems with hives. When I took antihistamines to treat them, it only made my hives worse and cover my body. That's when I discovered drinking alcohol remedied the hives for me. But, since then I haven't been able to tolerate anything related to allergy medications.. In fact, it was a combination of nasal steroids (Flonase) and Singulair (montelukast) that took my HPPD to heights unseen.
  20. Never hurts to be safe and get checked. But, chest pains was one of my very first symptoms only behind urticaria (hives). I never had a problem with my heart, in fact I'm only now discovering how much HPPD has affected my connective tissue. So I have no doubt the pain I was feeling is costochondritis in the chest area, related to tendon/muscle/connective tissue stress or changes.
  21. You might notice improvement in your symptoms (not sure about visuals), because drinking was helpful to me also in the beginning. I'm building a working theory on this. Part of it could be because, "Alcohol also helps to increase the release of dopamine, by a process that is still poorly understood but that appears to involve curtailing the activity of the enzyme that breaks dopamine down." http://thebrain.mcgill.ca/flash/i/i_03/i_03_m/i_03_m_par/i_03_m_par_alcool.html
  22. I have it also... I've had it exactly the way the video describes strong afterimages. Mine has lasted 6 years, but it's almost gone now. Funny thing is all of my other symptoms are directly correlated with the afterimages. As the visuals improve, so does the DP/DR, the mood swings, fatigue... Tried many, many supplements with no effect on the visuals. Even the few supplements that temporarily killed all my other symptoms did not touch the visuals. The only supplement I took that actually made my visuals intensely worse was licorice root extract in tea formula. That was scary.
  23. I have problems with opiates. They increase my visuals (illusory palinopsia or afterimages), and give me terrible anxiety with stomach problems. Same for you? Good luck with Naltrexone.
  24. Thanks for updating us. I couldn't really understand your last sentence. I guess you meant to say...if you impulsively take a drug again, you can expect your VS to be worse next time.
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