uknowme

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uknowme last won the day on March 3 2012

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About uknowme

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    HPPD

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  1. I had no idea about the patch until I found it on myself. They never said. My surgery was also emergency gallbladder surgery so there really wasn't a lot of discussion prior. It all goes away though. I'll definitely request to never have that little patch again but I'll also never willingly undergo any surgery again. The drugs-opiates, zofran, phenergen, etc.. they all wear off. That's the good news. I've had HPPD baseline increases from far lesser things so I was concerned when it happened to me. In a perfect world doctors or surgeons would tell you everything, but in my experience anyway, they seem to go over what they see as the most relavent. I never knew to even ask about a patch, never knew it existed. But apparently it is pretty standard and that's why I decided to share!
  2. Zofran has had no effect at all on my hppd
  3. I'm late in the game but for those who may experience similar at some point: Often when one goes into surgery something call a scopolamine patch (transdermal) is applied to the skin behind the ear. I had it for a surgery and though it was general anesthesia that made my HPPD way, way worse. It wasn't. I discovered this little patch a day and a half later ( I slept for nearly a day afterward). As soon as I found this little thing and removed it I got better. They're supposed to remove it I think. It prevents nausea from the anesthesia. If you touch it and touch your eyes, it will dilate your pupils. I had no idea what was going on and was really anxious. My pupils were dilated and it seemed to get worse. I didn't understand it. It is derived from an alkaloid of belladonna, scopolamine works by depressing the action of the nerve fibers near the ear and the vomiting center of the brain and central nervous system (CNS). The patch itself is designed with special layered materials that slowly release a small dose of the drug transdermally (through the skin) over a period of several days. Read more here http://www.surgeryencyclopedia.com/Pa-St/Scopolamine-Patch.html#ixzz2VbqFAXqp
  4. Thanks, Oliver. The article does prompt me to wonder what falls under the spectrum of "within normal range" for someone reading the results but not looking for HPPD or not knowledgeable about it. Mine (EEG) was done to look for seizure activity I had (through acute illness not chronic), though found not to be classic epilepsy. I do know I have HPPD but I've not been formerly diagnosed by Dr. Abraham and doubt I could get to see him in the near future. Is there anyone else reading who had normal EEG's? I thought this was common-place on the old forum but I could be wrong!
  5. Thanks for sharing that.
  6. Ghormeh, Yes! I just had an EEG about 2 months ago. It was to test for the presence of epilepsy which I don't have though I have had seizures during times of severe infection. That said, I couldn't believe the visuals it gave through the strobes with my eyes closed. Unbelievable. But I didn't mention HPPD...I thought about it, and went with my gut feeling that I would lose credibility for the initial reason I was there, and all of my other doctors would be informed( I'm in a very rural area right now and it seemed his speciality was classic epilepsy, stroke, etc. I could very well be underestimating the neurologist and I hope not but I've learned to pick my battles wisely when it comes to whom I disclose that information. I just didn't sense it would go over well). I would like to get a qEEG in the Boston area with someone who knows what to look for (in regards to HPPD) but I am unsure that will ever really be tangible.
  7. HBB, Thanks for posting the link. I haven't researched Neuroplasticity but that is pretty cool.
  8. I can't help but chime in here... There was much posted on this on the old forum I think , but yes, it can go away. I have known people in my real life who had HPPD. And for most of them, their symptoms resolved with time. Some took as little as 3 months others as long as a few years. I'm talking about visual symptoms, but they all had anxiety due to HPPD and I didn't know about DP/DR but they had symptoms of as well in describing it to me (micropsia/macropsia). Some stopped doing drugs, some didn't. I never understood why I continued to have symptoms until I found the HPPD community and saw that there were others like me, too. Even then, I can recall some who posted on the forums stating it went away.. Personally I wouldn't and couldn't recommend continuing drug use after the onset HPPD but I've seen it happen (resolve, go away, etc) in real time. There is always hope
  9. I always thought it to be sort of a BS diagnosis, but today a doctor mentioned something that made me think more of it, in relation to HPPD. He said patients with fibromyalgia react far more strongly than others to far less medication. I've not really heard that before, but I found it interesting that many of us have body pains, head pressure, etc (something someone could call fibromyalgia) in addition to not tolerating medications very well. Could be random coincidence and I'm sure some of us tolerate medications just fine.
  10. I have not, but I believe a qEEG will show something if read by the right specialist, so I've never had one myself..
  11. Dylan, I know people who have taken a lot as well so there is hope. As much as you mention... I know if I'd have come on the forum all those years ago and got alarmed responses, I'd be petrified. So please don't be .. I got my HPPD in the 90's and I have seen all kinds of things happen with liquid lsd (accidentally ingesting more because it literally spilled out that way, etc...) I know someone with hppd who ate the paper from a book of it it as a kid not knowing what it was because his father sold it and had it around. Who knows how many any of that equals out to? And I'm sure you know from experience there is a tolerance and even a cross tolerance between other hallucinogen substances, too. Just wanted to mention and reiterate those things. I don't judge you by what you did in this forum. I know people who did more than that and for longer periods and do not have HPPD.If possible I'd recommend avoiding falling into the self blame trap because it's very hard to get out from. I too have breathing problems. Do you have asthma at all? I thought I'd throw that in too since I see an additional person on here mention it. At times, it's been debilitating particularly in the years after the onset of HPPD.. You are very young and I am no expert but think you have youth and regeneration on your side. Will it ever resolve completely? Who knows. It could. For some, it seems to. Others like me learn to live with it and mostly after a while, it is not like it seems to you, today. Just wanted to welcome you- peace man~
  12. Glad to hear you have a good outlook; Keep it up. That is great, really. I think the best way to get by is to do just what you are..be as unaffected as possible and stay involved with life as much as possible. Nice to meet you, Boogres.
  13. Yeah, it decreased slowly over a five year time span from its onset (from mushrooms) to a barely noticeable baseline. It stayed that way, then worsened after the 5th year considerably with a bad reaction to a medication (Flagy-allergy) and stress. No one knows for sure why and I'll probably never pinpoint an exact value, either. I have always had DP/DR ever since I can recall, but it was markedly increased with the onset of HPPD. That too has waxed and waned over the years, with the peak being at the onset of the disorder and again after that 5 year mark. I'm wanting to avoid that again. Are you a suffering with both as well?
  14. Thanks for the reply, Boogres. It calmed me a bit in believing mine might return as well. So glad to hear it did for you. As far as injuries, the radiologist who read my report wants me to have an MRI (possible stress fracture with additional bulging disk problems). This sounds dramatic, but I grew up in gymnastics and I continued on my own into adult-hood (uh, more like into about 5 months ago I could still tumble. Haha.) and I think it's finally caught up with me. I was seriously convinced it never had to. I have other health issues, but until recently was doing well despite that. I have had HPPD since the magical year of 1998. Seems to be the year for some of us on here anyway. 14 years. I try to think very little about it( which is why I'm on and off of here so often) and mostly I'm unbothered by it, but this took me by surprise tonight. Not much changes baseline for me anymore (I drink the sh**out of coffee, alcohol doesn't do anything it but I rarely any now, and most antibiotics/prescribed meds don't turn it up either).
  15. I was prescribed Robaxin for back problems. It's a muscle relaxer. I have stayed away from them as long as I can but the pain I'm in is severe and no one prescribes real pain killers anymore it seems. So I took a part of one pill, not even half. I can't focus to read as well and I went to the store...Hppd is worse again. I can't believe it's my mind playing tricks on me. It's not the worst it 's gotten but I'm so tired after all these years. Muscle relaxers? Has this happened to anyone else? I usually just tough it out (physical problems) but sometimes you can't. I'm unable to exercise or run now too because of the injuries I have. So yeah. That's great...I took zanaflex no problem. I can't get another script for that one in my new location.