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Solveig

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Everything posted by Solveig

  1. I just read your story, and you have my empathy. I can relate to many of the symptoms you did, and still are, experiencing. Intoxication and dizziness are par for the course, unfortunately. I had the same soothing effect from nicotine and violent anxiety from caffeine. Caffeine, however, had the mixed effect of slightly focusing my perception, but it certainly wasn't worth the anxiety. Studies have been done showing that, in the schizophrenic brain, nicotine is actually quite soothing. Schizophrenia and hppd share some similar symptoms, so that may interplay with the motivation to smoke. I no longer smoke because it was taking a toll on my physical health, but I do miss the soothing effect. I hope you find healing in time. This journey is tremendously challenging. I look forward to hearing about your experiences with medication. As an aside, in which part of Scandinavia do you live? I spent some time in Norway as a teenager, and it's been my dream to return ever since.
  2. BigPapaChakra: I'm so sorry you've had to go through this experience as well. It is mentally crippling, and I really understand how difficult it feels that no one understands. Missjess and I talked about that and how we often don't bother trying to explain because no one has a reference point to even begin to comprehend this kind of mental anguish, and it can be even more painful to reach out and not get the kind of empathetic understanding you need. I have tried to talk to my family about my struggle post-ibogaine, and some of them empathize, but, as time goes by, people seem to forget, and it's not something I want to continually bring up. I think it's hard for people to recognize that this is something I deal with every second of every day. Missjess aptly described this experience as being a horror show. It's a nightmare of the worst kind that never seems to end. I also understand what it's like to be in a close relationship with someone who doesn't grasp the magnitude of what's going on inside your brain. I am no longer involved, but I remember it felt so isolating to be going through this non-stop torment, and, even though my significant other wanted to understand, there was just no way he could. When you're in this much mental suffering, it means so much to have someone understand, but it's asking a lot to have someone grasp the unfathomable. I know that before ibogaine, I wouldn't have been able to comprehend anything like this. No way. This is a whole different dimension of existence. There is nothing to compare it to. I would never wish this experience on anyone, but there have been times I've wanted for someone to know what it's like inside my brain for even just a day, so that someone could understand. This is a tremendously isolating experience, and it really helps to have true understanding and support. I'm really grateful for this website and for everyone who has the courage to reach out to someone going through these kinds of experiences. My thoughts are with you, and I wish the best for you as well.
  3. Yes, in theory it is very alluring, especially for someone that feels desperate for help. I believe that, within a cultural context, they are useful to people accustomed to rituals accompanying their use, but when outsiders dabble in substances from other cultures in which they have no experience or deep understanding, especially looking for a quick fix, the outcome can be disastrous, much as it was for Missjess and me. There are success stories with these "medicines," but it's a roll of the dice, and who wants to play Russian roulette with their own brain? Then again, I guess we all played Russian roulette with our brains, or we wouldn't be on this website. Ibogaine, however, is not to be trifled with; it's one of the most powerful known hallucinogenics and has the potential to wreak havoc on the brain in a way that no other plant comes close to. I wish I'd had a touch of cynicism and skepticism myself, but I can't go back and will likely live with the consequences for the rest of my life. I really feel for you, Missjess, and I hope that other people think twice before using drugs like ibogaine when suffering from dp or other mental disorders. It may be an ideal last ditch effort for chronic addiction, but fragile mental health should be dealt with in other ways before resorting to substances like ibogaine.
  4. I just sent you a message through dpselfhelp. I'm so glad you contacted me; it's really relieving to know you're still out there fighting the battle, and it's also given me the motivation and courage to keep telling my story and start focusing on informing ibogaine providers of the possible reactions to treatment. So many websites are touting ibogaine as being a "miracle plant," and making it out to sound as if it will solve all your problems by "resetting" your brain chemistry. How irresponsible!! This is the same kind of propaganda that drew me to ibogaine in the first place. I really should have known better; magical cure-alls are a fallacy and should be approached with great skepticism, but the unfortunate thing is that people who are emotionally or mentally struggling are very vulnerable to promises of "magical" cures. I've posted on the Eboka forum as well, and my story was met with some degree of disbelief and negativity. It seems ibogaine supporters are incredibly resistant to acknowledging the possibility that ibogaine can indeed destroy a brain. The most negative reactions I've received have even indicated that it was my fault for experiencing what I did because somehow I was resistant to the treatment or not embracing the magical healing powers out of some defect within my personality or character. Reacting as if there is something intrinsically wrong with me or that I have an inability to face my "issues" is totally absurd because ibogaine is sold as a treatment for people who are struggling psychologically. Placing blame on victims is a cruel and inappropriate reaction to suffering. Some people have suggested to me that feeling better is about attitude; I call bullshit. Positive attitude goes a long way in many circumstances, but it's not enough to turn off a damaged brain constantly torturing you with unrelenting frenetic electrical energy and a never-ending hallucinogenic trip from hell. There are circumstances in which all the positive attitude in the world cannot heal. That isn't to say that a positive attitude can't help because I know that it takes a degree of positivity to maintain hope and keep going. I try to infuse my daily life with every bit of positive energy within me, but, for me, it's demoralizing when people say that attitude will make the difference in quality of life. Let me know how it goes with the nootropics. I tried some and have considered trying more, but it took going through so many awful experiences with drugs and supplements before I found Lamictal that it scares the shit out of me to try new things. Right now, I'm having an awful time trying to sleep at night and have been prescribed a couple different drugs to help with that, after using many herbal supplements that haven't helped, but I'm terrified to put them in my body. I even had a nightmare last night that I had tried one of the drugs, and it fucked me up horribly. It sucks to be in a position of needing so much help but having such a delicate brain that help is practically impossible to find due to intolerable reaction to so many treatments. Let's keep communicating and also making our stories known so that others at least know the possibility of brain damage they may face in choosing to use ibogaine. I hope the ibogaine community eventually starts acknowledging outcomes like ours and tries to help people who struggle after treatment; maybe we can be the ones to make a difference. I would do just about anything to prevent someone from another experience like ours.
  5. Hi Missjess! I'm so relieved to hear from you. Yes, I received the message and will reply right away. Hang in there; things do get better with the right treatments. It's so important for people like you and me to continue to share our story so that others may have a well-informed awareness of the possible risks. In my experience with the staff at Awakening in the Dream House and others experienced with providing ibogaine, there is a great resistance in acknowledging possibly horrific outcomes from using ibogaine and even more resistance to helping those negatively affected. I maintained contact with Awakening in the Dream House in an effort to get help and received very little in the way of support. This is not good, and I wonder how many others have been damaged by ibogaine that may not be posting their experience online. Maybe some have even been institutionalized or succumbed to suicide. I know ibogaine has helped many, but it's crucial to inform people of the potential damage involved with treatment. I went to a reputable facility, did much research, and described my symptoms to the staff with as much clarity as possible, yet this resulted in tremendous brain damage. Even with great prudence, a negative outcome is a potentiality, and that can't be ignored. It is my belief that because of the cult-like attitude surrounding ibogaine, as well as a strong push for legalization among ibogaine advocates, sweeping negative outcomes under the rug is often the chosen method of dealing with the potentially negative fallout for ibogaine's reputation. Ibogaine has been healing for many, but it is ethically responsible to disclose all possible outcomes.
  6. Wellbutrin seemed to help very slightly, but came with other side effects that made it intolerable. I tried Wellbutrin within the first few weeks after ibogaine at a very low dose. I'm not sure anything could have put much of a dent in what was going on at that time. I was still "tripping," so to speak. I tried Zoloft before Wellbutrin, and that was a major mistake. It was the first drug I took immediately upon returning home from Mexico. I tried Zoloft because it had worked well before I used ibogaine, but I weaned off within a few months because I felt guilty about taking pharmaceutical drugs - a misguided attitude I've long since abandoned. Needless to say, the Zoloft was a nightmare (I'm guessing due to it being an SSRI), but I had no idea at the time that SSRIs were usually a bad combo with hppd. Gabapentin was the third drug I tried, and it was not good. It further disoriented me. But as I said, I'm not sure there was anything that could have helped at that time. My brain was on fire with electrical energy, so throwing a psychotropic drug into that was just generally a bad idea. Maybe Lamictal would have helped, but I'll never know. I'll look into your suggestions about sleep. As you said, sleep is such a critical component of recovery but hard to get with an hppd brain. Maybe I'll try Keppra first, since it's what I have on hand at the moment. I did try melatonin, and it wasn't effective. I've gotten some relaxation from a passionflower, skullcap, hops, california poppy, and chamomile mix, but the problem is stayig asleep. Valerian makes me feel hangover drunk, so I stay away from that. I want to stay away from anything habit forming, if possible. I don't want to be dependent on any more drugs than necessary. Patterns aren't currently a big problem. The ibogaine "trip" never produced patterns in the way I experienced them with LSD or psylocibin. The initial visuals with ibogaine were a frentic hum of greenish yellow scribbly light, like everything was electrified, and they could only be seen in dim or dark light. When I would close my eyes, it was much worse. I constantly feltl this sensation of electricy pulsing through my synapses, like the circuit breaker in my brain had been fried. Currently, it's mostly a lighting issue for me. There's usally a low-grade vibration to my vision as well. On my better days, nice soft indoor light is fine, but flourescent light and bright sunlight are killer. My best days are when it's overcast. I'm really grateful for your advice and suggestions because it sounds like you've tried many treatments and have a lot of experiences to draw from. What initially set off hppd for you? How long have you dealt with it? Do you feel like you have satisfactory quality of life now?
  7. Visual: I have not read Dr. Abraham's material but have read about him through many of the posts on this site. It's very interesting to me that he has described hppd as being in a constant pre-seizure state because that is exactly how I've described it to people. Do you still find the Sinemet to be useful? I recall reading that you feel like some of the progress made with Sinemet has been permanent. Is that why you take so little? As for the halos I experience, when I initially look at someone, they appear normal (aside from the feeling of looking out of a fishbowl due to dp/dr), but when I must maintain eye contact or need to continue looking at someone, it's almost as if they become too bright to look at. When I say white-washed, I mean that it's as if they are beginning to fade into white light. I guess I've never thought about the possibility that my eyes might actually be moving around when I have jumpy vision. It does feel as if they are shaking, but I always attributed it to a perception distortion. I do think there might be something to the dopamine theory. I can't handle caffeine, but it does temporarily seem to add a little more clarity. Soon after I returned home from Mexico, I was prescribed a very small dose of Subutex by a psychiatrist I was seeing at that time. He thought it would be helpful after reading Mauricio Sierra's book on dp. It did seem to clear up my vision for a few days and also knocked me out at night, which was what I desperately needed at the time, but it stopped doing anything useful very soon after I started taking it. It was very uncomfortable getting off of, and, ultimately, I hated the drug. I recently had surgery and was prescribed hydrocodone and dilaudid. That was the first bit of relief I really had as far as my mood. Then again, most people do tend to like caffeine and narcotics, so maybe there is no correlation at all. The drugs I've tried so far are (in chronological order): Xanax, which was given to me during the ibogaine experience as well as after, Zoloft, Gabapentin, Wellbutrin, Propranolol, Klonopin, Ambien, Subutex, Latuda, and Lamictal. I currently have a prescription for Keppra, Ativan, and Seroquel but have not tried any of those drugs yet. Prior to ibogaine, I had taken Prozac and Serzone as a teenager and Zoloft for a brief time in the spring before ibogaine. I did experience "brain zaps" when I weaned myself of of Zoloft, and that was another description I used when trying to explain how it felt after ibogaine, but, like you said, it was much worse. The brain zaps from Zoloft were a walk in the park in comparison. Every drug I took post-ibogaine caused an increase in problems until I started Lamictal. Thank you for your advice and suggestions. I'll ask my APRN about Sinemet. Do you know anything about amitriptyline for sleep and if that interacts okay with hppd? That was something recently suggested to me for sleep. I really need some decent sleep. I feel like I'm starting to fall apart physically without it, and I certainly need it for any hope of a mental recovery.
  8. Thank you for all your responses. Visual: I've been on Lamictal since July 2012, so it's been about a year and a half now. I started at 25 mg and have slowly been going up ever since. I'm now at 725 mg, and the plan is to keep going because it's only helped and hasn't produced any negative side effects beyond dizziness after I take my nightly dose. My symptoms now are intense dp, some halos, especially under fluorescent lights or when I stare at the same thing for awhile, anxiety, and depression. The halos can make it really hard to sit down and talk to someone face to face for very long without looking away because the person starts to look white-washed, as if the halo starts to take over their face almost, and my vision starts to jolt or bounce around. It's really unnerving. Fluorescent lights are really killer no matter what, especially when they start flickering, which fluorescent lights have a tendency to do. When I'm tired or the medication isn't working as well due to hormone fluctuation (Lamictal loses efficacy with higher levels of estrogen) then some of the brain taser sensation starts to set in and I feel really out of it, like TV static is going on inside my brain, and I feel a sort of electric hum throughout my body. When I take my meds at the same time every night and get enough rest, the Lamictal does a pretty good job of toning down the feeling that I'm on a hallucinogenic drug, but life is still disorienting, depersonalized, and without joy or a sense of normalcy. I know there has to be something more to help, but I'm so scared to try more meds because it was hellacious trying to find something that worked. It's like my brain is so sensitized that most any chemical I put in my body has a powerful (and usually negative) effect. I've read some of your (and Merkan's) posts about Sinemet and was wondering what you think. Do you still take it? Does it cause sleep problems? That's another concern I have about trying new meds because I don't sleep well as it is. Bottom line though is that I will take the plunge to try something, but I would like to do it with as much information as possible. I know we all react differently to drugs, and certainly I seem to have extreme reactions, but anecdotal information is better than none, especially since we all have (or have had) hppd and this makes our brains a bit different than the rest as far as med tolerance. If not for this website, I wouldn't have known to avoid antipsychotic drugs. Onedayillsailagain: I was given both Iboga and ibogaine. I have the dosage written down somewhere but can't remember it right now. Thank you for the chemistry information. I'm trying to learn as much as I can about that in order to better understand what happened. The other supplements I take are CoQ10, fish oil, a high dose b-complex, cal/mag, and some herbal sleep concoction to help me sleep, which I've had a hell of a time doing lately. My APRN has prescribed Seroquel for sleep, but after reading about how hppd and antipsychotics don't mix well, I've decided to forgo that route. I had someone suggest amitriptyline the other day for sleep. Does anyone have experience with that? Thank you for suggesting the NMDA agonists. I will definitely look into adding that to my supplement regimen. Any input or suggestions are much welcomed.
  9. Yes, I learned the hard way not to mess with ibogaine. I did find what I thought to be legitimate providers though. I went to Awakening in the Dream House in San Pancho, Mexico. You can find their website online. They came well recommended. I think they truly care and are trying to do good things for people but are ultimately playing Russian roulette with people's brains. I know they have good success with addictions treatment, but recommending ibogaine for mental or emotional conditions is a dicey game, and they blatantly do so on their website. The receptivity I had from them when the treatment went seriously downhill was absolutely awful. I can't imagine treating people who had a disastrous reaction to ibogaine the way they treated me. It was like they wanted to wash their hands of me as soon as they heard me say things were not good. I contacted everyone I could find online that knew anything about ibogaine and tried to get some help, but no one wanted to talk to me. It felt like ibogaine was some kind of cult or religion and because I was reporting a negative experience, I was being ostracized by the people most in the position to help me. I tried to contact Kenneth Alper, and was shut down very quickly. I spoke to an East coast ibogaine provider who told me he had never heard of a reaction like mine. Everyone I spoke to said my experience had to have been related to something else, that it couldn't have been ibogaine. It was like trying to speak out against some kind of deity that all these people worshipped and refused to believe could harm anyone. I was even told that I just needed to better embrace the experience and even that I should use it again because the only way to undo the damage was to undergo the treatment a second time. I walked away feeling so defeated and saddened that the very people who had offered to accompany me on this "healing" journey had totally rejected me when I needed help more than ever before. They treated me like I was contaminated goods. It's really sad when people who tout themselves to be spiritual helpers are rejecting your experience and refusing to help. Needless to say, I moved on to other avenues of healing and support.
  10. In November 2011, I used an African root bark in an attempt to cure the depersonalizations and derealization I had developed one month earlier. I had no idea what was happening to my brain at the time I developed dp/dr. I had been reading about ibogaine as a treatment for depression for a few months prior to developing dp/dr, and had considered it for that purpose as well as a predisposition for addiction which I feared succumbing to after a long battle as a teenager. Two months leading up to the dp/dr, I had been undergoing extreme stress and lack of sleep. One day it just hit me, like flipping a switch, and I was never the same again. I decided to attempt to solve my problems by flying to Mexico to use ibogaine. Rather than experiencing any of the intended effects, the experience resulted in what I feel to be severe and traumatic brain damage. Traumatic does not begin to describe the magnitude of this experience. It put me into a permanent state of hell. My symptoms were a feeling that my brain was being tasered, a sense that a high voltage of electricity was jolting through the neurons and synapses, an urge I could barely resist the urge to find the nearest precipice to jump off because my brain felt as if it were on fire. I felt as though I wanted to jump out of my skin or run screaming through the streets out of terror and in an attempt to make the fire in my brain stop. Anything to make it stop. My vision was jumpy, the colors were weird shades of green and yellow, it seemed as though I was looking out at the world from the inside of a murky algae filled fishbowl, and I felt very drunk from the sensation of ataxia. At night, my eyes saw spider webs as well as the rest of those symptoms. Although the extreme visuals and drunk sensation toned down somewhat, the rest persisted for approximately seven months until I was prescribed Lamictal in July 2012. I had gone through a laundry list of medications that worsened my symptoms, but the Lamictal offered the first glimmer of hope. I could feel a tiny reduction in the insane frenetic energy in my brain, and that has continued with each dosage increase. I'm now at 725 mg with a target dose of 800 mg. It has been an unfathomable nightmare, and Lamictal truly saved my life; however it has not by any means cured me. I still live with intense dp/dr, but the experience is bearable. At night or when I am tired, the sense I am on a hallucinogenic drug rears it's ugly head. My brain often feels jumbled, and the sense of connectedness to my loved ones is compromised. It's an existence I would never wish on anyone, but I keep going because I have three children that need a mother in their life, and because I refuse to give up hope that I may get better. The hope that someday I might feel a modicum of joy in my life is something I refuse to give up on. I posted on dpselfhelp for awhile and found it helped to connect with people who we're going through dp/dr as well. I also wanted to warn people against the possibility of brain damage from using ibogaine because there were some people considering using it for the same purpose I did. One young woman did choose to use it and ended up with many of the same symptoms I did. She corresponded with me for awhile but then suddenly stopped. I felt great concern she might have harmed herself or tried to end her life as she was considering that. I hope she did not give up and retained hope. There is always hope. I did know the feeling of suicidal ideation though. For many months, I felt a overwhelming urge to choose to end my life as well. I resisted because I knew I could not do that to my children. I had never heard of hppd, but eventually learned about it and knew instantly that was what I was experiencing. Before that, the only thing I could relate to, other than an extreme version of dp/dr, were the symptoms commonly associated with some traumatic brain injuries. I met a guy who had fallen off some high scaffolding while doing construction work. He spent some time in a coma, and his family had been told that he likely would never come out of it, but he miraculously did. Needless to say, his life has never been the same. He lives in a daily hell from his brain injury. When he described his symptoms, I could relate to so many of them. In reading many posts on this website, I feel a sense of connectedness to all of you, and I am very encouraged that we are fighting this fight together with so many who have also refused to give up hope. I'm also hoping to get some advice and feedback on treatments that have worked for people with similar symptoms to my own. I'm wondering about the possibility of getting alleviation from symptoms by trying Sinemet and/or Keppra as I've read some positive things about those drugs on this site. Any feedback would be very welcome. Thanks for taking the time to read my post, and I wish all of you healing and the hope of someday reclaiming our lives.
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