Organizing the Information We Know into a Chart

[Will]

Has something like this been done yet? If not I propose we create an online chart so that everyone who is stuggling with this illness can cross-reference whatever key ideas they have.  First we should probably generate a list of what kinds of information should be included.  So lets put brains to doing what they do best and brainstorm up any and all information that might be useful (I imagine it probably makes sense to try think about how our answers might best aid a medical researcher... what would help them them to key in on identifying what we "have" and perhaps deriving a decent treatment for us)

Please, I'm begging people to try to do this... I'm seriously struggling,, and I know many of you are too... Cordellia has taken the lead and given us this place to talk, but we need to get our information together so that we can the most of it. 


A few ideas to start off the list....

Triggers:
Types of Treatment that were helpful:
Co-morbid conditions:
Illness onset:
Other family members with condition:
...

[Cordellia Amethyste Rose]

I know this is taking a long time, but please be patient. Cynthia is organizing all the information she gets into a paper. It's really impossible to define things like co-morbid conditions until we understand this thing better. This is a great place to brainstorm, but I think it's too soon to expect definitive answers. I promise you we're working on it. I do agree that making lists & comparing data is wonderful, though. I think it will be very useful. Please also look at question "What helps" that I posted. There are some important questions on there that can help us brainstorm how to help ourselves, each other, and future people who are diagnosed with this.

[Cordellia Amethyste Rose]

P.S. There is already research going on by an organized professional. The more participants the better. This is a great place to brainstorm, but it would be really really helpful to get the data to the proper experts. I encourage anyone who feels comfortable & wants to help find answers to participate in Cynthia's research study. Getting a new disorder recognized is a long, slow process, but she's working very hard & hasn't forgotten us for one second. The study is just questionnaire. She's collecting the data & organizing it into a paper that we hope to get published. It's strictly confidential. In the meantime I'll email her & see if there's anything else she can suggest. Please feel free to message me if you have any questions.

[Will]

Thanks, I'll check check out your "what helps" post. I definitely want to help, whats the best way to contact Cynthia?

[Cordellia Amethyste Rose]

Pooling our information, supporting each other, and participating in the study are the best ways to help right now in my opinion. You can email her at [e-mail] She's very kind & supportive. Many find it liberating to talk about this.

Will said:

Thanks, I'll check check out your "what helps" post. I definitely want to help, whats the best way to contact Cynthia?

[Nathen Israel]

Hi,
Just found out about this web and just start for looking for ways to avoid intense daydreaming. I find that the email address [e-mail] doesn't work.

Thanks

N

[Cordellia Amethyste Rose]

It's [e-mail] Sorry, did I type that wrong? Oops. Thx for letting me know. :)

N said:

Hi,
Just found out about this web and just start for looking for ways to avoid intense daydreaming. I find that the email address [e-mail] doesn't work.

Thanks

N

[Alice Bassett]

I feel that waiting for medical science to recognize and take seriously the problem of maladaptive daydreaming is like waiting for peace in the middle east. All we can do is educate the so-called educated and then have these professional researches regurgitate the same information that we've given them. The only difference is that the doctors and Phd's will get "credit" and credibility for all the work that non-professional people do. Then they'll prescribe medications that have side affects and only approximate a solution to the problem. Although, I have read that an OCD medication did help a person with maladaptive daydreaming disorder. But some medications prevent vitamin B12 from getting to the brain, which can cause severe discontinuation symptoms when the side affects become intolerable. Just a pet peeve, I thought I'd share.

[Cordellia Amethyste Rose]

I agree that the world may never fully be educated. It's the nature of everything. However, not all doctors are egotistical credit-hoggers. Cynthia has been nothing but supportive and encouraging. She deserves credit because she works very hard, but she definitely isn't hogging it all. I'm not a professional, and she's given me plenty of praise and credit for all my hard work. I agree that medications are often over-prescribed for people they won't help. I also am a firm-believer in talking back to my doctors. If something isn't right for you, speak up, or they won't listen. I wouldn't be here if I'd listened to my docs. They all said it was just depression, OCD, anxiety, etc & just to take pills. Guess what? I knew it was more than that, and surprise surprise the pills didn't work. I'm not a huge believer in authority. I do what works for me, regardless of what anyone says, especially if I think they're not listening. This has helped more than any drug.

Alice Farll said:

I feel that waiting for medical science to recognize and take seriously the problem of maladaptive daydreaming is like waiting for peace in the middle east. All we can do is educate the so-called educated and then have these professional researches regurgitate the same information that we've given them. The only difference is that the doctors and Phd's will get "credit" and credibility for all the work that non-professional people do. Then they'll prescribe medications that have side affects and only approximate a solution to the problem. Although, I have read that an OCD medication did help a person with maladaptive daydreaming disorder. But some medications prevent vitamin B12 from getting to the brain, which can cause severe discontinuation symptoms when the side affects become intolerable. Just a pet peeve, I thought I'd share.

[Nathen Israel]

Thanks!

N
Cordellia Amethyste Rose said:

It's [e-mail] Sorry, did I type that wrong? Oops. Thx for letting me know. :)
N said:

Hi,
Just found out about this web and just start for looking for ways to avoid intense daydreaming. I find that the email address [e-mail] doesn't work.
Thanks
N

[H89]

Triggers: Music(I almost can't listen to my ipod anymore without going into my fantasy world), Stress, Boredom
Types of Treatment that were helpful: I have PTSD and my Xanax has helped to reduce the time I spend in my made up world
Co-morbid conditions: PTSD(I have a very unusual case), Depression, Phobias
Illness onset: I've been doing this since I was about 4 years old
Other family members with condition: None that I know of, although I highly suspect my mom has this condition.

[phoenix62]

I think I might have mentioned this before, but...well, here goes.
Oh, and Cordellia? I contacted the person you told me about and did the survey. She (or one of her colleagues?) is doing some kind of trial in NYC? You know anything about this? -and they are working on a documentary??
Anyhow...
Triggers:usually, depression-and being alone (and bored)
Types of Treatment that were helpful: antidepressants
Co-morbid conditions: I suspect major depression? That's what the doctors in the past thought, anyhow
Illness onset: about 4?
Other family members with condition: I don't know. I don't think anyone...

[Cordellia Amethyste Rose]

Hi there. Thanks for helping Cynthia. She's continuing this important study & doing a clinical trial. There's a separate documentary going on which seems kinda cool, but I don't know any more than what was in her email. I told her to go ahead & send that out since I don't know the details. It would be great to get the word out. I wish I could help more.

phoenix62 said:

I think I might have mentioned this before, but...well, here goes.
Oh, and Cordellia? I contacted the person you told me about and did the survey. She (or one of her colleagues?) is doing some kind of trial in NYC? You know anything about this? -and they are working on a documentary??
Anyhow...
Triggers:usually, depression-and being alone (and bored)
Types of Treatment that were helpful: antidepressants
Co-morbid conditions: I suspect major depression? That's what the doctors in the past thought, anyhow
Illness onset: about 4?
Other family members with condition: I don't know. I don't think anyone...