anybody living with HPPD?
357429
No, I'm sorry and GL!
201593
I had it over New Years and it turned into walking pnemonia. \n\nMost of my family is either ill with it or has had it already. \n\nBad, bad strain.\n\nHope all is well with you.
357350
I used to have it a lot.  I washed my hands ALL the time and took like 3 or 4 baths a day.  Couldn't eat anything that I didn't feel was clean enough, ended up crying all the time because I thought I was going to die of some weird sickness...had it for a long time but never took any medication for it.  Eventually it went away on its own.
389909
I have it. I found out i had it in 2005 february. i had a big flare wen i found out and was in the hospital for two months but now im just on like different medicines and im fine. good luck
516778
Hi,\nI am so sorry that you are going through this.  Unfortunately, I think most people who have chronic medical problems have had similar experiences (I know I have) and of course, I do not think you should give up.  I totally understand wanting to give up because I have felt that way after being treated by incompetent physicians, rude and condescending staff, etc.  But remember, this is your life and you have to try to hang in there with this.  YOU know that your seizures are "real," it's just going to be a question of getting to the right person.  I know you feel like you've tried and tried, but it might just be the next doctor you talk to.  \n\nI know you are upset and I don't exactly understand what you are saying, but most (good) psychiatrists know that many of the medications that they give can cause symptoms like seizures and tremors, etc.  It seems like they should be able to clearly see what you are saying (as I understand it):  you were misdiagnosed with a mental illness, given medication which caused temporal lobe epilepsy and that now temporal lobe epilepsy is your "main" diagnosis; not the mental illness.  I hope I'm understanding you properly.\n\nYour situation sounds so stressful, I don't even know where to start with how to help you.  For example, I think you could be helped SO much by a support group for people with epilepsy/seizures.  You are probably already familiar with the epilepsy foundation.  I put the link below.  They have a place on there where you can locate support in your area.  Then, maybe at the support group, you may find someone who thinks they have the greatest, most caring neurologist in the world and you could try to see that person.\n\nI'm thinking that maybe when these physicians see your chart and see all of the mental health diagnoses, they are, like you said, "writing you off" to a degree - it does still happen unfortunately.  You've probably already done this, but in the visit, I would bring my films (x-rays/ C.T.'s, etc.) and whatever documentation you have that you have temporal lobe epilepsy as your primary diagnosis.\n\nIn the broad scheme of things, it probably doesn't really matter if they are treating you for a mental illness or for the epilepsy as long as you get the treatment you need.  Like I said, a psychiatrist COULD be the right person for the job.  I don't know.\n\nI guess I don't have any answers, but I wanted to reach out to you mainly to tell you to get some rest, maybe take a little break from doctors (I do that some times) and then maybe things will look a little more optimistic to you.\n\nI couldn't tell from your question if you were just very frustrated and were saying, "now die?" or if you really meant it.  Because I am a social worker, I need to make sure that if any time you feel like you might hurt yourself or someone else, you should either go to the emergency room and/or call the 24-hour crisis line where you live.  I put a link to the national suicide/crisis hotline below.  Calling either of these numbers DOES NOT MEAN that you are crazy or suicidal.  It means you need someone to talk to about your frustrations; someone who won't judge you and who will help you get through the night.\n\nPlease take care of yourself.  I wish you all the best...
1125774
Difficulty holding a job for more than a few weeks, and that only because sometimes you can fool people for a few weeks.  Difficulty holding a husband, live-in boyfriend, family member or roommate, because I have the hoarding form of OCD, which makes me very difficult to live with.  My collected clutter makes people claustrophobic and uncomfortable.  Difficulty making decisions, even unimportant ones such as where to have dinner.  Tends to irritate people.  Landlords hate me--I try never to let them in while I am in residence, or I would be evicted on the spot--because after I leave, they usually have to tear out the carpets and start over.  Impossible to vacuum when there are piles of clutter everywhere all the time.  I have been divorced 4 times.  I seem to only get worse with my symptoms as I get older.  The same thing happened to my father:  My mother divorced him, he ended up living alone in a trailer park, where he filled his trailer up to the ceiling with clutter and trash, even the bedroom, even the bathtub(!). and had only a narrow path to go through the house.  He could never let the landlord in to see how he lived, so he was afraid to ask them to fix anything.  If the toilet broke, he fixed it himself or just lived with it.  If the heat went off or the fridge quit, same deal.  DIY or just deal with it.  He had no hot water for years.  Sorry to get so wound up, but it truly does affect sufferers' lives in a negative way.  I live in fear that I will become as bad as my father was.\n http://www.squalorsurvivors.com
996578
It can lead to hemorrage (sp) and other problems, but if it's monitored, it's really not that bad......or mine wasn't, I don't think.  They stay kinda loopy for a year or so, off and on.  I bled a lot, and had some pretty serious depression for several months, off & on.  I would advise anyone looking to quit the dope "cold turkey" to find a 6 month inpatient program, if not a year-long one.  It's HARD to stay off when it's become such a.........well, around here it becomes a way of life.  It's hard to turn your back on the only thing you know.
89365
Your question doesn't make any sense. Do you know someone who has it and you want help caring for them?  Do you know someone who might have it and need help geting them diagnosed?
194580
My neighbor's 7 year old is possessed by an evil demon.  He starts fires and breaks windows and was diagnosed with ADHD.  I say it's the devil.  He screams and screams when he wants his way and his parents are at their whits end.  I definitely believe in demon possession from that experience.....)(
487604
Unfortunately, I did, but it was a combination of symptoms that led to the diagnosis of Type II diabetes for me.\n\nMy eyesight was very blurry, I was tired, thirsty, running to the bathroom, headaches...I didn't know the effects of hyperglycemia (high blood sugar) after taking Prednisone.  After complaining to my parents, they took my blood sugar.  It read 526.  Was rushed to the hospital the next morning when it read 327, and stayed that way for 4 hours afterward.\n\nMy eyesight problems scared me the most because I like to read, not to mention watching TV.  At the time I couldn't see past 10 feet; driving was a nightmare.  I didn't go blind, but I might as well have because I couldn't see too much of anything anyway.
1153348
Queen Crystal,\n\nFirst of all, do everything you can to take the trip.  You deserve it.  Your symptoms are classic Parkinson's.  I know that you specifically asked for people that have PD.  I just do a lot of research about PD, and work with PWPs all the time.  So, please discount my answer if you really value first-hand experience.  \n\nProblems with balance and walking are some of the inevitable consequences of PD.  They are very frustrating.  Your experiences with fatigue and low blood pressure are something that many other people living with PD experience.  \n\nI do not know what you are doing now for exercise.  However, fine tunning with exercise before you go may help.  Also, talk to your physician about your trip.  She/he may have recommendations.  I recently talked to a patient's wife that says that the Apokyn injection has saved them many times.  \n\nPlease feel free to contact me via Yahoo 360, or my blog - MyParkinsonsInfo.com.  We could talk some more.  Thanks!\n\nMatt\nMy Parkinson's Info
908970
ummm MOST DEFINITELY!!!  hubby is home on medical and is more agitated than he's ever been in his whole life...he used to just read the paper, but now he watches the news through the day and there's usually some new issue he's wound up about.  no wonder most of us americans are depressed.  ugh!
126143
Hey Brian.  Diagnosed w/Addison's in 94 and all risidual effects due to such; also living with Epilepsy, three ulcers, effects of surgical abdomal tumor removal, blah, blah, blah, etc... meds include but not limited to:\ncortef, diazide, topomax, protonix, provigil, sodium suppl., potassium suppl., \nOldest daughter diag. Leukemia, in remission now, just had her baby 5 months ago. I am a successful business woman, will rule a small country some day.  I cope great, take meds regularily, just cannot miss that's all.  Eat maybe 2600-4000 calories daily to keep my weight of 130 lbs up, lots and lots of beef-go figure??? \nI am happy, content, healthy, sexy, kind, gentle, wonderful, I say healthy cause I really am considering-everything is under control. There is more, but can't remember due to seizures. he he he
388351
having had to stay awake for long periods whilst serving in armed forces yes i have hallucinated. It is so disconcerting especially when its night time, looking through your night vision equipment, and you see what looks like a woman climbing a tree and hanging herself (other ppl i found out later had a similar hallucination) or you look over and it looks like your buddy is missing half his face. There have been some pretty far out ones!
1147628
i personally don't have it, but my best friend does....he is applying for disability, but i don't know if it is related to that...my best advice is to use "distraction" music ((he listens to music as much as possible at a moderately low level, y'know just loud enough to be heard personally)) that seems to keep him from becoming too annoyed...other than that he recommends a doctor visit, some other afflictions cause the same symptoms
443292
Like all the previous replies, know you are not alone. We all have this disease and that is why we are able to reply here and help you out.  It is extremely frustrating when others don't understand the disease, or find it surprising how we can get so tired so often; how we can be in pain so often.  Sometimes I truly believe others think we are making it up. I am on a sick leave from work due to a string of flares that would just not go away. I get foggy spells sometimes, I am usually tired most of the time, and my joints get very achy and I can be bed-ridden for the entire day. Then some days are flare/pain free and you wouldn't even know I had the disease.\nOn a side note, I also have been taking Plaquenil for the past year and a half and have always been worried in the back of my mind that I would be within that small percentage who suffer eye damage from it. If you are on Plaquenil (hydroxychloroquine is another name for it)--make sure you see your Optometriest twice a year, rather than once a year.  \nLastly, to all the people who replied to this question and are suffering from ANY auto-immune disease, I wish you all the best of luck and hope that someday they will find a cure for us all.  Take care.
352293
Go to www.beyondblue.org.au for an interactive checklist that goes through symptoms, plus fact sheets and lots more info.  It is an Aussie site, so some information on where to get help is local to Australia, but the rest of the information is gold.  Good luck.