# Message from Dr Simeon



## Guest (Dec 20, 2004)

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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## Guest (Dec 21, 2004)

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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## Guest (Dec 21, 2004)

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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## sleepingbeauty (Aug 18, 2004)

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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## Guest (Dec 21, 2004)

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!!


?
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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## jc (Aug 10, 2004)

meds arnt the answer


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## g-funk (Aug 20, 2004)

i agree


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## maria (Oct 28, 2004)

what do you guys think is the answer?


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## g-funk (Aug 20, 2004)

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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## Inflammed (Aug 10, 2004)

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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## Inflammed (Aug 10, 2004)

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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## Guest (Dec 21, 2004)

Inflammed said:


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


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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## Guest (Dec 21, 2004)

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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## Guest (Dec 21, 2004)

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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## dalailama15 (Aug 13, 2004)

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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## Guest (Dec 21, 2004)

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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## Guest (Dec 21, 2004)

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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## g-funk (Aug 20, 2004)

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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## Guest (Dec 21, 2004)

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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## sleepingbeauty (Aug 18, 2004)

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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## Guest (Dec 21, 2004)

Sleeping Beauty,

Take a look at my Introduction post in the main section... Mabey some of the strange meds I have been on may help you???

This forum has saved my butt and if I can give back anything I want to!

S


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## Guest (Dec 21, 2004)

Hi,

The thing about this forum is.... we even don't know whom we've talking about, and we trust many people here that we even don't know. And we don't know already the illness that others have. :?

I just wanted to share some things that could help to have faith in someone or something, simply as that. :shock: But I realize I am too obsessive with this forum, and meds, and DP. I think that would be better for me to take a break because I trust too much people here, I am totally afraid of all after. Because of all I've read since 18 months, eveybody had their opinion, and most of them are controversial but they make sense. And I found that many people here were intelligent, and I trusted them, even if they weren't agreing with me. So it makes me more confused, about what to do. And after all, I don't know if I trust someone who makes sense, because I didn't know anybody personally. It's the wonderful world of the Net.

I hope I'll overcome my OCD and fear of all, DP included. And that I will take a break from the forums! 

I will you all Merry Christmas!

Cynthia xxx


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## Guest (Dec 21, 2004)

Lancelot said:


> dalailama15 said:
> 
> 
> > Cynthia,
> ...


I dont want AMMO! I didn't do nuthin'. I love Charles Manson.


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## Guest (Dec 21, 2004)

I'm sorry Cynthia.

I'm not allowed to get Naltroxone (Lancelot) unless I have alcohol addiction. It's the only way (where I am) to get Naltrexone for free. My endorphins are really really high all the time... since forever. I tried to get Naltrexone because of all the immune system diseases I've got the last decade or so, but it's still not good enough to get it for free. I despreately want to ("need") something to control endorphins. I can be so high on endorphins that life crises, bad news, tragedy etc wont even touch me. I can be so high I dont seem human, or seem bizarrely happy or pumped like a sociopath.


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## Guest (Dec 21, 2004)

ghost said:


> I'm sorry Cynthia.
> 
> I'm not allowed to get Naltroxone (Lancelot) unless I have alcohol addiction. It's the only way (where I am) to get Naltrexone for free. My endorphins are really really high all the time... since forever. I tried to get Naltrexone because of all the immune system diseases I've got the last decade or so, but it's still not good enough to get it for free. I despreately want to ("need") something to control endorphins. I can be so high on endorphins that life crises, bad news, tragedy etc wont even touch me. I can be so high I dont seem human, or seem bizarrely happy or pumped like a sociopath.


Ghost,

How do you know your endorphin levels are high? Is there a blood test?? I am asking this honestly, as I did not think there was such a test. I would be very intrested in getting tested!!!! (I am being totaly serious!)


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## Guest (Dec 21, 2004)

Lancelot said:


> ghost said:
> 
> 
> > I'm sorry Cynthia.
> ...


I dunno... dunno nuthin'.
Actually YES! There is... you test for opiates in urine and endorphins in blood. Except my Doctor... nevermind, I talk about myself too much.

The test in the US is called... Oh God. That was the problem... We cant get it in Aust... beta-endorphin-immuno... I dunno. Wait I'll try and find it. But we cant get it done in Aust. It's used in autistics actually. This test for "edogenous opiods" (endorphins, adrenalin) can explain many symptoms, and they thought high endogenous opiods are found in mothers who have autistic children... (I think it's stress against the wall of the womb that changes the ph of amneotic fluid... but...), and my HEAD is full of pressure and hurting from raised stuff NOW... plus I'm flighty/happy/high in extremily unnatural ways... and, have many bad immune system diseases that dont run in my family. Long term heroin use keeps raising your endophins (Endogenous opiods means "natural pain killers") and the addict get sevely bad immune systems diseases... eventually. I have chronic THROUGH THE ROOF "white blood cells" (the cells to fight infection) and have done for MANY years... They blamed it on everything from Psych drugs to Crohns disease but at the moment both of these factors cant still be causing it.

I was euphoric in a disturbed way from age 5. Like a happy happy HAPPY (stupid) ADHD.
 I dunno. I have to find the name of the test.


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## Homeskooled (Aug 10, 2004)

Dear Cynthia, 
I'm really glad for you that Dr. Simeon took the time to write back to you. Did you ever end up trying the Lamictal or Anafranil? I do agree with you that you should try to stay away from the forum, or at least stay away from asking for too much advice from people on here....I guarantee you that for every measured, reasonable answer you get on here, you'll get at least two which will scare you to death and throw you into abject terror...its too many cooks in the kitchen, so to speak.

Jc, I really do believe that there are objective ways to find the physical source of a person's DP and medicate/change them. And therapy has a place in this as well. Its not the end of the road for you yet. I dont know, but somehow I think the truth about DP is very close to.....well, what I put in my post of the same name.

And Ghost, I'm sorry, but you are confusing everyone on this site. The contradictory nature of your posts actually has me convinced that you are doing this purposely. I'm not yet a professional, but it is quite impossible to be a schizophrenic and to have asperger's.The symptoms of the two are diametrically opposed. And you seem to latch on to other's symptoms as your own in posts in which they themselves need help, in order to turn the spotlight of sympathy on yourself. I do not know whether you have any of the illnesses of which you speak- but you do run a great chance of having Munchausen through the internet. People have been known to lose 50 pounds so as to appear to have breast cancer, and show up at support groups with their heads shaved, like scenes from the movie Fight Club. Now the internet has begun replacing hospital ERs and real life support groups for people with Munchausen and other factitious disorders. I dont know whether I'm telling it like it is, but I AM telling it as it comes across to me. You may want to see someone professional for this.

Peace
Homeskooled


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## sleepingbeauty (Aug 18, 2004)

yea right before ghost came i posted a link about munchausen biproxy and the internet. of course none of us are in ghosts shoes but at least from what i gather from her posts.. i can see that most definately. and the sociopathic nature of her posts are very obvious. as far as aspergers i really dont know too much about it.. but i lived with a man with bipolar skitsofrenia and when he was skitzing out he couldnt even write his own name. everything came out in scribbles like a 2 year old there is no way that he could have actually typed on a keyboard. i went to his support group meetings and the same is said for the rest of the people there. they cant write or read or do most things that we can do because they are hardcore tripping. like if you try to draw a picture when youre stoned or on acid it looks totally cool but when you look at it when youre sober its just scribbles.

he never just shut it off and on though like you do ghost. sometimes you type with perfect sense and syntax then you flip around and type all f#cked up it makes people think that you are lying. personally i dont think you are skitz and if you are its mild. what you have is a serious serious case of obsessive compulsive sociopathy.

and furthermore.. if you like charles manson so much id like to see you spend some time with him see how much you like him after that. saying stuff like that makes people think youre full of doodoo. hence the munchausen assumtions.


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## Guest (Dec 22, 2004)

Sleeping beauty,

I think you know what sector 9 is. From what i've read, you have much experience with good ole sec. 9. Paxil shut down sector 9 for a good 11 months, but now that I am off of paxil, The sector is in full operation about 5 times a day. Now if you can excuse me, there is more work to be done there. Be back in about 6 minutes!


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## Guest (Dec 22, 2004)

Homeskooled said:


> Dear Cynthia,
> I'm really glad for you that Dr. Simeon took the time to write back to you. Did you ever end up trying the Lamictal or Anafranil? I do agree with you that you should try to stay away from the forum, or at least stay away from asking for too much advice from people on here....I guarantee you that for every measured, reasonable answer you get on here, you'll get at least two which will scare you to death and throw you into abject terror...its too many cooks in the kitchen, so to speak.
> 
> Jc, I really do believe that there are objective ways to find the physical source of a person's DP and medicate/change them. And therapy has a place in this as well. Its not the end of the road for you yet. I dont know, but somehow I think the truth about DP is very close to.....well, what I put in my post of the same name.
> ...


  Ya Ya


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## sleepingbeauty (Aug 18, 2004)

oh i should have made the question more clear pure narcotic. i meant.. what does the "9" indicate. does it stand for anything in particular?


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## Guest (Dec 22, 2004)

That is the average number of times that there is activity in the sector a day. On a good day it is more like 14 :lol:


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## sleepingbeauty (Aug 18, 2004)

ok then mr hairy palms. :roll:


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## Guest (Dec 23, 2004)

this thread is turning into a huge disgusting mess

ewwwwwwwwww


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## Guest (Dec 23, 2004)

I think some of you guys here are so stuffed with meds that it is plausible to assume that your symptoms are med induced after all.

By now the chemistry of your bodies might be so disturbed that probably every med on the planet is driving you deeper into the off balanced state youre in anyways.

Only thinking how poisoned the med cocktail probably leaves your bodies makes me dizzy.

And even if there was a med that would help it is not going to do any good to a blood that has the finest mixture of substances there is.

Ever realized that mixing different alcoholic drinks far exceeds the negative properties of only one drink?

This principle also applies to meds, only meds are even more harmful than alc, so I don't want to know how med damaged some of you really are.


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## Guest (Dec 23, 2004)

You cannot put it on all those who are damaged. I am damaged because I trusted my doctor, the FDA and the drug companies. Nobody expects to be poisoned by those who you believe to be compassionate beings. People grow up trusting doctors and that carries over into adulthood. We put our lives in their hands from the time we are children to the time we are adults.

With that being said, some people here are poisoned and don't even know it. That is a scary thought. When that is the case, more meds are added to the cocktail to try and correct the problems that the original med or meds are causing. Thus, more fuel is being added to the fire and more damaged being caused like you said.

As far as correcting the problem goes, that is not easy. Recognizing it is one thing, but stopping is a whole different matter. Stopping these meds can be absolutely brutal beyond comprehension. Most people do not have the will power, time or medical support to get off of these drugs. The drug companies are creating addicts for life because of this.

I wonder if the drug companies really designed these things to make us sick. Think about it. One drug leads to several ever other drugs, therefore more profits are made. The theory is that these drug companies want us to stay sick forever. How else could they make money on us? And the fact that they are addicting and cause withdrawal symptoms that would make a grown man cry doesn't hurt their cause.

I hope these bastards get exposed for what they are someday.What they are doing is equally as bad as what the nazis did.


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## jc (Aug 10, 2004)

i desperately want to come off of meds.....i want to know what the real me is


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## Guest (Dec 23, 2004)

Jc,

I know you have battled a problem with the bottle in the past and let me say this. You would be better off hitting the bottle everyday and going to the pub than you would be taking those horrible meds every day. Medication is much worse than alcohol. If I had to medicate an anxiety disorder then I would take whiskey and gin over klonopin or paxil anyday. With that being said, you can get off these pills if you really want to. I am doing it. I am doing it cause I want to know the true me, just like you want to know the true you. What are you currently taking?


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## Guest (Dec 24, 2004)

Merry Christmas to all of you 

But please close this thread someone....  It's not related anymore

Cynthia xxx


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