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Discussion Starter · #1 ·
This is the message I've got from Dr Simeon from Mt Sinai. (I have written to them)

As you probably know , there is no PROVEN medication treatment for this yet. Yes, clomipramine and lamotrigine have been found to be helpful, in some people, so your psychiatrist can decide whetehr to try them. We are unfortunately not able to offer specific medication advice to people that we have not formally evaluated. Your psychiatrist can feel free to contact us or obtain any of our review literature.

So, Anafranil and Lamictal canmaybe help A BIT.

Cynthia
 
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Discussion Starter · #2 ·
How the hell does he know? Has he ever had DP/DR? Has he ever taken these medications himself?

I am sure all of his patients just end up becoming zombies so in turn they really don't care if they have DP/DR. That is what happened to me. I was so damn numb that you could've hit me with a 2x4 and I wouldn't have felt it. I could've cared less about DP/DR. I was too busy trying to get get some movement down in sector 9 to care about DP/DR. That is hard work when you are on those pills!

I think that's what doctors mean when they say it "helps." It doesn't actually make you feel good, it just makes it so you don't feel at all. I guess that could be considered help.
 
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Discussion Starter · #3 ·
Pure Narcotic said:
How the hell does he know? Has he ever had DP/DR? Has he ever taken these medications himself?

I am sure all of his patients just end up becoming zombies so in turn they really don't care if they have DP/DR. That is what happened to me. I was so damn numb that you could've hit me with a 2x4 and I wouldn't have felt it. I could've cared less about DP/DR. I was too busy trying to get get some movement down in sector 9 to care about DP/DR. That is hard work when you are on those pills!

I think that's what doctors mean when they say it "helps." It doesn't actually make you feel good, it just makes it so you don't feel at all. I guess that could be considered help.
"Improvement" is equated with "change".

If your condition "changes", it's seen as better. If your OUTWARD appearance and manner has "changed", they confuse it with improvement.

Doctors see stabilising, and curing mental illness as a process of outward complience mostly. If you sit like you're braindead and fake happiness and stability... your "illness" is seen as stable.. really, giving high dose drugs to ram brain chemicals into new highs or lows is debatable in terms of how stable and alleviated it makes you... thought patterns are changed with high dose drugs and it depends really if it's going to "make your".."illness".."well".. I dunno, "changed" full points for "changed"... but Doctors hate to see loud, emotional, verbose, critical, panicky mental patients.. it's like their allergy, they freak. They think "well" from mental illness = fake happy, totally calm, no complaints.. out the door. It's a big demand for some people though...
 

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SECTOR 9 SECTOR 9.. COME IN SECTOR 9.. YOURE NEEDED ON THE MAIN DECK.. TIME TO POLISH THE MAST AND DROP ANCHOR INTO THE SALTY ABYSS.. DONT FORGET YOUR LIFE PRESERVER LOOKS LIKE THE TIDE IS BEGINNING TO SWELL.. ITS GOING TO BE A ROUGH RIDE WITH INTENSE SPRAY.. ALL ABOARD MATIE!! :)
 
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Discussion Starter · #5 ·
sleepingbeauty said:
SECTOR 9 SECTOR 9.. COME IN SECTOR 9.. YOURE NEEDED ON THE MAIN DECK.. TIME TO POLISH THE MAST AND DROP ANCHOR INTO THE SALTY ABYSS.. DONT FORGET YOUR LIFE PRESERVER LOOKS LIKE THE TIDE IS BEGINNING TO SWELL.. ITS GOING TO BE A ROUGH RIDE WITH INTENSE SPRAY.. ALL ABOARD MATIE!! :)
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I dont understand. If you want me to leave this message board. Please tell me.
If you want me to leave BEFORE breaking an established rule, please tell me. If you would like to suggest something please write to revelation. I dont understand these obscure posts following what I am writing. Your words are very suggestive. Very pressuring. Please write a PM to me or revelation or the moderator on duty. If revelation does not agree with my presence I think he should write me an email or PM telling me this and I can just permanently log out.
I'm sorry for the trouble. But, as I see it, banning is for swearing insults direct rudeness spam and trolling. I have conditions placed on me as an extra, not to infuriate, distract or irritate people. But these are harder to define.
I'll write once more, I was trying my best today but my signature and location got changed by someone to look silly.
I feel very pressured when, every time I try and reply a strange comment comes on screen. I feel pressure. I've only just returned after 2 weeks and I'm trying to co-operate but I dont understand the resistance.

I have anxiety. I have to cook, clean and pay bills and many extras. I come here to see peoples symptoms and stories and see some interesting people.

I cant deal with this.
 

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what do you guys think is the answer?
 

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Well, meds can play a part thats for sure, but they cant be relied on forever if you want complete recovery, in my opinion. For some, they are necessary to live your life comfortably until you find a way to do that on your own. I am not anti meds myself, I take them. I wish I knew the answer. I think what Jc and myself were trying to say is that there are other things you can do to help yourself. It is not the definitive answer, so holding out for a drug that will change your life ain't gonna happen.
 

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Massive will power...
Healthy living style...
Elimination of all chemicals in our body (from food, drugs, tobaco)

Symptoms is our body`s language...it;s telling us something...
Maybe each of us has it`s own answer to this problem...
Maybe it`s only polution that causes us all this trouble, the air we breath has maybe become to soiled for us...haha...(joke)

Mind&body goes along through life...as our solution should.
 

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Meds only hides the problem from us...
The day you stop medication...you`ll find yourself at the same place you were before...
Unless you take them forever...thats a personnal choice...

Just fight your way through...stop searching, stand up and slay the fear.

Fear is the key...
It`s eating us from the inside...
 
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Discussion Starter · #12 ·
Inflammed said:
Massive will power...
Healthy living style...
Elimination of all chemicals in our body (from food, drugs, tobaco)

Symptoms is our body`s language...it;s telling us something...
Maybe each of us has it`s own answer to this problem...
Maybe it`s only polution that causes us all this trouble, the air we breath has maybe become to soiled for us...haha...(joke)

Mind&body goes along through life...as our solution should.
I think my answer lies in hypnosis, L-Glutamine, St Johns Wort, ADHD meds, Valerian Forte, and getting conscious thought. I need a dx if I'm going to keep coming here though. I've been to Asperger's forums dx in tow and the style of thinking is bizarre, it's closer to "me" (I "get" it), I understand the thinking on Asperger's forums but if you think GHOST is a sociopath, then you should see the self-consumption of auties... The self-consumption would drive you nuts... I actually cant even comprehend it.

I often write, in frustration to the multitudes of people who accuse me of sociopathy and Schizophrenia (I mean, yes my Mum got me diagnosed with it, it's a stain that will follow me forever...) to describe the symptoms of schizophrenia or sociopathy, and then APPLY them to me in a way that shows a pattern longer than 3 months, constantly... 24 hours a day... I think my behaviour has some elements missing.
Namely... I have empathy. I have a conscience (hm hm), I can have organisation of thought. I do NOT emotionally regress/protect myself. I do not "hide" from society...
Also, on an internet forum, a "sociopath" would be "fooling you" and hiding in a lambs clothing (read the literature).

And a schizophrenic would have zero coherance and SUCH bad preoccupation that comments of support would read "God bless you my child" or "That sounds like me! That happens to me!" (If you understand...)

I guess it's "insulting"... I guess it's upsetting and a "blow"... I dunno.

I have been "institutionalised" (yes mam, no sir, thankyou, please etc etc) I "see" something highly ominous (hm hm) in the Psych system that YOU guys cant see (yet), you have to live it to feel the perile.

I did "try" 100% to behave today. And I was doing well. My efforts were sabotaged by a hacker, and I've had no response from the mods in regards to my copious PM's so I dunno... I feel dumb and worthless I guess. I tried to "communicate" to address the situation... but being ignored increases the extreme pressure I've felt since coming back. I've had words put in my mouth. My "awareness" of reality is slightly higher than people give me credit for! This is a good support forum for DP and I "know" I've got this... It's just so hard to "be" here (Emphasis on be). these concerns are (in real terms) being ignored in terms of response so I assume this will be skipped past as well.
 
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Discussion Starter · #13 ·
All that for a simple tiny post. I think I wont post anymore about meds, and all that is realted, it makes too much trouble.

Sorry and have a nice day,

Cynthia
 
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Discussion Starter · #14 ·
Cynthia said:
All that for a simple tiny post. I think I wont post anymore about meds, and all that is realted, it makes too much trouble.

Sorry and have a nice day,

Cynthia
Sorry... that weird thing about ships, and boats and masts set me off :wink:
Wow. I "listened" to your posts... the Doctor, writing to find out about meds and the two recommendations.. I listened. I'm sorry. I didn't MEAN to spit vitriole, I was playful and attentive and "contributing"... at first... it's just... what's all that boats and uh... I dunno. It's deliberate. That's one thing I know for sure. There's one person here who "faults" me before I've twitched into action... pre-emptive strike... very nice tactic... although I'm sure it's ALL MY FAULT. :)

It's nice. Obviously sleeping Beauty "wants" me to unravel into nonsense... so whether I am controlling myself & contributing OR NOT, I'll still get fried. Her posts are strangely placed and uh... rather... uh what's the word... "triggering" (???) dunno. My willpower aint that strong (Dont cha know).
Everyone here knows my capability to "rant", but y'know... obviously this pre-emptive strike tactic is STILL my fault... I dunno. It's like I'm being stalked or I'm involved in a stake-out... I cant BREATHE in here. If I move any muscle of my own volition... I dunno... my location & signature change... weird.
(People dont "allow" me emotional stability) :)
 

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Cynthia,

Thank you so much for posting. It is very encouraging to hear that Dr. Simeon responded personally to you. I have been thinking about asking my psychiatrist to contact Dr. S. and now I have more confidence to do this. I can read him her note to you, point out that she encourages these queries, and will most likely fire him if he doesn't make the effort.

The responses to your post are knee-jerk, ill concieved, and you should ignore them. Guys, Dr. Daphne Simeon (she, not he) is the head of the only research group dedicated specifically to DP in the country, is leading the most extensive research in DP in the world. She has done massive interviews, collected invaluable data, and the group is doing real science about all aspects of this disorder--PET scans, drug trials, etc. She is preparing a book about DP which will be the most important and usefull info ever published.

Thanks again, Cynthia, for both taking the effort to contact the Mr. Sinai group and for sharing the response. This is real and valuable information that I can use

your freindly neighborhood dalailama
 
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Discussion Starter · #16 ·
8) I didn't know she was a research specialist.. didn't know who mount sinai group were. I have little faith
 
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Discussion Starter · #17 ·
dalailama15 said:
Cynthia,

The responses to your post are knee-jerk, ill concieved, and you should ignore them. Guys, Dr. Daphne Simeon (she, not he) is the head of the only research group dedicated specifically to DP in the country, is leading the most extensive research in DP in the world. She has done massive interviews, collected invaluable data, and the group is doing real science about all aspects of this disorder--PET scans, drug trials, etc. She is preparing a book about DP which will be the most important and usefull info ever published.
I am new here as a poster, but have been reading post for a long time... If people want to do nothing but complain about their problems, talk to a wall...

Dr. Simeon is by far the best expert we have in the US. I peronally have spoken with her numerous times (as well as my doctor) and it didnt cost a penny. She has given us more ideas of things to try then anyone else. Try getting her tapes from her last speech at the Psych convention and actually learn something about the problem you complain about!

Ghost,,
If you dont want to get better (or atleast try any/everything possible) find a forum empathetic to Charles Manson, you may be appreciated there..

And if you want to rip on me, I am about to post a thread about who I am and my experiences in a few minutes, it will give you more ammo that way....
 

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I really didn't mean to denigrate the work of Dr Simeon in my post about meds not being the answer. I am very appreciative of the research there and at the dp unit in London, having been in contact with them myself. I was more responding to a sub topic on whether meds alone were the answer, and whilst I think it wonderful that you took action and wrote to them, Cynthia, I didn't want you to rest all your hopes of recovery on finding the perfect med. I hope you didn't take it the wrong way, Cynthia, you know where I stand on the subject anyway - you know I totally empathise with you. :wink:
 
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Discussion Starter · #19 ·
Cynthia,

I didnt mean to belittle your original post either. I think we are all walking examples of sucess and failures of meds. The biggest thing to remember is that everyones chemistry is different! That combination may the THE pill for you (and god I hope so!) Clonopin has been the only thing keeping me alive for 10yrs personally...

The most important thing is to remember to never give up and keep the faith!
They find cures everyday from med's that were made for a different purpose!

Xyrem is a god-send for Nacoleptics, but it came from GBH, the date rape drug. Naltroxone was made for Herion Addicts, but it has helped many of us with decreasing endorphins. Even Viagra was made for a completly different purpose till someone found out that it made ,er,um... Certain things work better :)

Hang in there and keep trying everything you can (within safe doctor reccomended reason!!!)
 

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if she can find a med for it. great. but you cant get mad at us for being cynical about it because of the complete lack of help that meds have brought to many of us here. ive been playing hopscotch with so many different meds and nothing has even made a dent. that is enough to make anyone a skeptic.

GHOST. you waste so much time thinking about YOURSELF that you fail to even notice that i wasnt even TALKING TO YOU.

repeten porfavor..

NOT TALKING TO YOUUUUUUUUUUUUUUUUU!!!!!!

my post was in jest to pure narco. i was adressing HIM noT youuuuuuuuuuuuuuuuuu. DUH!!! :roll:
unless you also have a sector 9.. which is doubtful since you find them icky and difficult to talk about.

btw.. narc.. whats the 9 indicate?? :)
 
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