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mutts

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mutts last won the day on July 6 2011

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  1. Everyone reacts to medications a little differently so I think it would be hard to say. Many people on here have struggled greatly with adjusting or stopping benzo usage. Although, it could be that you are just paying more attention to these symptoms in order to assess how your body is reacting to the change in dose. Either of these would be perfectly normal. My personal experience with benzos has been a bit unique, I think. I take 5mg of Valium per day, which helps to reduce some of my worst visual symptoms; however, after awhile the side effects become intolerable (brain fog, dizziness, and a feeling like I am not completely here) so I abruptly discontinue using them without tapering. When I feel they are out of my system I go back on the 5mg. The conventional wisdom would say that this is a bad idea, if not outright dangerous, and yet this system has worked well for me for over a year now. I, of course, discussed it with my psychiatrists before experimenting with a very serious medication in such a manner. He gave me the go ahead, with the caveat that I call him immediately should I sense anything was wrong. He agreed that since I was the one taking the medication I was in the best position to gauge my reaction to it and adjust accordingly. Not feeling as if I am committed to a strict regimen has been a great relief to me and allowed me to feel more comfortable in general. I included the second paragraph to offer a different perspective on benzo usage and the variance of their potential side effects. I am able to take them and stop with ease, and yet others on here have gone through a living hell trying to discontinue their usage. You should speak with your doctor about how you are feeling and if you are truly feeling worse from going back up to a higher dose, then perhaps it is not beyond the realm of possibility that you would be okay on a lower dose? I cannot emphasize enough how important it is to consult and communicate with your physician before altering your medication.
  2. Visual- Thank you so much for taking the time to write this post. I am sure breaking down such a complex mechanism into layman's terms was not an easy task.
  3. This disease is a lonely one, eh? I can't stand internet chats, but I can appreciate the desire to connect with someone on a more personal level. Sigh.
  4. He arrived at a diagnosis by a serious of questions, and probably observations. To my knowledge there is no other way to diagnose hppd. Wish there was-then we wouldn't have to spend years of our lives trying to convince the doctors we aren't making this up!
  5. Suffering You say you understand my pain but you can't and you don't I don't even understand my pain So many cliches you throw at me Things happen for a reason God has a plan, but I have no god and therefore I suffer Needlessly aimlessly Ever day of my life. Caught here by my fear, by my love by my guilt Stuck in a moment of hell Life is short but it can last forever.
  6. I'm always tired. But 31 is getting up there so maybe it's just your old age? jk.
  7. I haven't tried Klonopin, but I have tried almost everything else. Currently I take Valium every day to help with the anxiety. Experimenting with drugs, even prescription ones, always carries risks, but you have to consider whether or not the potential benefits outweigh those. I decided long ago that they do-my life is a wasteland with this disease. As far as exercise go I think you should be fine. Keeping your body in good health is important for everyone and even more so for those of us who are already dealing with an overwhelming amount of stress from a disease. Keep us posted as to how it goes!
  8. For anyone thinking about going I can relate my experience. I went to Dr. Abraham and tried the medication. It is not a placebo because you take the prescription to a pharmacy of your choice and have it filled. Unless you are one who thinks the whole world is conspiring to keep you sick this should eliminate any fears about that (in which case I really don't have an answer for you). I didn't feel the medication worked for me, but the trip was worth it because I finally had an official diagnosis. Dr. Abraham is extremely intelligent and kind and, most of all, he doesn't think we are all making this up to get attention (which has been my experience with 99 percent of the medical community). Having a diagnosis means that your own doctor can no longer stare off into space the minute you start talking about hppd because if he does he'll be ignoring a serious medical condition. Of course, without a diagnosis, most of our doctors just pretend hppd doesn't exist. I am not wealthy and I had to save up for the trek to Boston, but it was worth every cent just to be in a room with someone who took me seriously and treated me like the professional, intelligent adult that I am. However, the trip was also very traumatic as I was forced to live and talk about my hppd. Also, even though I did not have high hopes for the medication, it was quite heartbreaking when it did not relieve my symptoms. If you think you might be interested in going I would suggest researching Dr. Abraham and deciding whether or not you feel like he can help you. In my opinion someone who was a co-recipient of a Nobel Prize is far from being a self-serving quack. My personal experience with him has only furthered this perception. Furthermore, the medical community at large ignores our condition and I am thankful for anyone who cares or is interested in it enough to actually take it seriously. This of course, is only my opinion.
  9. I have also always wanted a support group for this! Preferably the kind that has faces and voices! I am going on ten years now and still scared shitless at times. Would be so nice to have someone to turn to that could really understand. I have also met someone with hppd and it was rather surreal, but very cathartic in a way. I wish we could have a convention or something where we could all meet up and talk about our experience with this disease. In leu of that Skype may work. I'd definitely be willing to give it a shot! Guiseppe-that really is very sad about your friend and a reminder that there are things to be grateful for. At least I get to deal with this disease in the comfort of my own home and accommodate it as much as possible. I cannot imagine trying to cope with this in jail.
  10. I smoked for about five years after the onset of hppd (going on eleven years now). I very much regret not quitting immediately after the I first came down with hppd. Your brain is still forming until you are 25 and I desperately wished that I had given myself every opportunity to recover. When I saw Dr. Abraham earlier this year he strongly advised against using marijuana as he personally has seen patients with mild hppd get bumped to severe symptoms after smoking.
  11. I can't help but wonder if it isn't as much related to anxiety as it is the bad trip. On the visual snow forum many people have experienced the onset of similar symptoms after particularly stressful episodes in their life. In my case there was a latency of about two weeks between the bad trip and the onset of hppd. This period was filled with extreme anxiety, panic and paranoia. I wonder if the latter did not do as much as the former to bring this on.
  12. Hey Joe, Thanks for taking the time to write this and keep everyone updated. My visual symptoms are by far the most aggravating aspect of this disease and it is nice to have a little hope that something may help.
  13. I have trouble with all lights all the time. The sun is my nemesis and it is kind of a sliding scale of suckiness down from there to complete darkness. Which also sucks. Valium seems to help a little with this, but perhaps it just makes me not care.
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