Jump to content

If you find useful information here, your gift would help keep this site going. Our staff is entirely volunteer.

Photo

Suggestions for this site


  • Please log in to reply
78 replies to this topic

#1 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 31 March 2011 - 08:52 AM

Please post any suggestions you have for the site in this topic. All are welcome although may not be able to do them right away. If your suggestion is related to what might be a bug in the software, please post it in http://survivinganti...ns-and-answers/ Thank you.
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#2 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 31 March 2011 - 09:39 AM

[posted for stan]

when i look my case in "members" signature is called "history" there is written (confidential) near and it appears in my posts
for me it is good because i want it appears , but why is it written confidential ? a bug
or have i to write in " about me" ?

Thanks for your suggestions, stan.

I made that field confidential because some people may put personal information in it. They may not be familiar yet with the site and its culture. It may take them a bit to figure out how much about themselves they want to be "public."

That field is strictly confidential, for application for membership, so I can understand something about the applicant first.

You can copy it and put the same information in your signature or "about me" if you'd like.
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#3 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 31 March 2011 - 09:45 AM

[posted for stan]

this is in first page(Post suggestions for changes in the appropriate topic in the Site Questions forum.)

is this visible by a single visitor ? a member ?

so : i click :forum and search: questions and found nothing

have i awful cognition problems?

The front page (Welcome) is visible to all visitors and members.

Good catch, I made a mistake in pointing to a forum that doesn't exist. I put the correct link, to this new topic, in the post. Merci!
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#4 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 01 April 2011 - 08:45 AM

to answer a "newbie" possibly, we need to have a "history" or the answer can be wrong, twisted or inexistent actually, we need to research old posts, memory
i do not find where , at the beginning of an entry, it is pointed; for an extern doctor , to understand story of the patient he will not follow all posts since 2 years ago to find how many years on celexa ...

it would be nice everybody , especially a newbie, to complete his history when registering

above right/ clic on your name/profile/under your name clic "edit profile"/complete your "history" and of course
"save changes"

This is a good idea, stan. History, however, is confidential. People put information in there when they are registering that they may not want to be public to anyone in the site.

If you wish, you may keep your history current, but only you and the administrator can see it.
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#5 stan

stan

    Silver star

  • Members
  • PipPipPip
  • 589 posts
  • LocationFrance

Posted 02 April 2011 - 03:21 AM

to correct the post above

i do a little mistake, to show your signature you have to do

to answer a "newbie" possibly, we need to have a "history" or the answer can be wrong, twisted or inexistent actually, we need to research old posts, memory
i do not find where , at the beginning of an entry, it is pointed; for an extern doctor , to understand story of the patient he will not follow all posts since 2 years ago to find how many years on celexa ...

it would be nice everybody , especially a newbie, to complete his history when registering

above right/ clic on your name/profile/under your name clic "edit my profile"/left "profile"/left "change signature"/put your story/
and of course "save changes"

for anxiety 

12 years paxil - cold turkey 1,5 month - switch celexa 1 year taper; total 13 years on brain meds 

66 years old - 8 years  med free

 

in protracted withdrawal syndrome

 

chronic fatigue syndrome...off balance and dizzy...sleep very bad...dryness syndrôme...prostate...derealization...itching psoriasis...unable to be quiet inside... to rest though improvements akathisia...dilate bronchitis ...auto-immune disorder...conversion disorder...strong back pains...permanent stress...emotions no control...my senses are false... many feelings are false since beginning...locomotor disorder ...

 


#6 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 02 April 2011 - 07:19 PM

This is a good idea, stan. History, however, is confidential. People put information in there when they are registering that they may not want to be public to anyone in the site.

If you wish, you may keep your history current, but only you and the administrator can see it.

Since updating the History field is not useful, I have made it so you cannot change it after you register.

Perhaps this will alleviate confusion when we talk about your history.

Back to stan's suggestion -- how do people feel about putting their withdrawal histories in their signatures?
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#7 stan

stan

    Silver star

  • Members
  • PipPipPip
  • 589 posts
  • LocationFrance

Posted 09 April 2011 - 02:35 PM

What must be done so that if a person types zoloft, paxil, effexor, xanax on google it falls on a webpage of this website? or a page of this website is on the 30 first suggest by google ?

#8 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 09 April 2011 - 04:18 PM

stan, I believe Google needs to see a lot of instances of those terms in content. I have entered them (and many more) in the meta keywords for the index but, as I understand it, Google pretty much ignores this. Google looks for valid content, traffic, and links. Now, there are a lot of sites selling pharmaceuticals, and the pharmaceutical companies themselves, that are going to have many, many more instances of these terms in content and much more traffic, so Google always will list those first. As for your other suggestion -- putting history in your signature, looks like people like it. I think it will be very helpful. So -- by the power vested in me, it is now site policy. Please, everyone, put your withdrawal syndrome history in your signature. Thanks for your suggestions, stan.
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#9 stan

stan

    Silver star

  • Members
  • PipPipPip
  • 589 posts
  • LocationFrance

Posted 12 April 2011 - 07:18 AM

i think we have to put how to taper paxil, celexa ...: something as : example 20 mg,(better with liquid if exist, or else scale on ebay) every two weeks 1 mg until 10, then at 10,5 , taper 0,5 mg every two weeks it will need 15 months (a little more as one year) if people have difficult, (especially at the end), they can stay more than two weeks they have to never try to updose, wait ,it will pass, never switch (because a few are very bad when switching) especially long termers have to wean slow at the end a slow weaning will not say no suffering, but will be the most manageable and when problems, please ask old termers who succeeded people can wean quicker or slowly if they feel ok or not

for anxiety 

12 years paxil - cold turkey 1,5 month - switch celexa 1 year taper; total 13 years on brain meds 

66 years old - 8 years  med free

 

in protracted withdrawal syndrome

 

chronic fatigue syndrome...off balance and dizzy...sleep very bad...dryness syndrôme...prostate...derealization...itching psoriasis...unable to be quiet inside... to rest though improvements akathisia...dilate bronchitis ...auto-immune disorder...conversion disorder...strong back pains...permanent stress...emotions no control...my senses are false... many feelings are false since beginning...locomotor disorder ...

 


#10 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 12 April 2011 - 10:10 AM

Another excellent suggestion, stan. I'll start a Tapering forum and we can start a Tips and Tricks topic (or something like that).
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#11 bells

bells

    Member

  • Members
  • PipPip
  • 19 posts
  • LocationN/A

Posted 13 April 2011 - 12:27 PM

Maybe a vent/rant section? For when it feels too much and you're so frustrated you don't even feel coherent - like a virtual scream. I remember reading Girl, Interrupted and the psych hospital she was staying at had a variant of this; some sort of padded or soundproofed room where any of the patients could go it one at a time and scream/go crazy. I have those moments and it's just sheer pain and severe frustration. On some sites users put *trigger* into emotive/disturbing posts as a warning but a vent section would be a warning in itself for the more sensitive to avoid, I think.

Used SSRI's for mostly 8 years.

Tapered over the course of approx. one year.


#12 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 16 April 2011 - 10:21 AM

Interesting idea, bells. Would it be okay if the Rant area was unmoderated? It might be difficult for mods to read. But people who are really in trouble might post there. We want to be there for them if they are in severe distress.
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#13 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 17 April 2011 - 09:42 AM

Bells, let's try this: The forum Heard from Medical Personnel was supposed to fill the role of documenting all the nonsense we've gotten from the medical profession. Nothing much has been happening there. I've changed it to How do you feel about the psychiatric industry? Rant away.
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#14 stan

stan

    Silver star

  • Members
  • PipPipPip
  • 589 posts
  • LocationFrance

Posted 16 May 2011 - 01:35 AM

scrolling in our forum, when we are in a page thread, we scroll down slowly, but at the bottom, we have to scroll up, scroll up to reach top page to choose else, in "psych central" they put a button link "page top"; you click and hop, you are on top, no scroll up, scroll up, scroll up... aaahhh!apologizes !! i do not see, in the bottom left corner , there is a small hidden link "back to top"

#15 Healing

Healing

    Silver star

  • Members
  • PipPipPip
  • 588 posts
  • LocationCalifornia

Posted 16 May 2011 - 11:11 AM

Ha! I did not know about that "Back to Top" link! Thank you, Stan..... :D
1996-97 - Paxil x 9 months, tapered, suffered 8 months withdrawal but didn't know it was withdrawal, so...
1998-2001 - Zoloft, tapered, again unwittingly went into withdrawal, so...
2002-03 - Paxil x 20 months, developed severe headaches, so...
Sep 03 - May 05 - Paxil taper took 20 months, severe physical, moderate psychological symptoms
Sep 03 - Jun 05 - took Prozac to help with Paxil taper - not recommended
Jul 05 to date - post-taper, severe psychological, moderate physical symptoms, improving very slowly

#16 Neuroplastic

Neuroplastic

    Silver star

  • Hidden
  • PipPipPip
  • 382 posts
  • LocationNorthern Hemisphere

Posted 17 May 2011 - 12:00 PM

Ha! Neither did I. :blink: Next time, Stan should ask what there was before Big Bang (and many other things, for that matter), and then give himself the correct answer. B) Thanks, Stan, the "Back to Top" info will come in really handy. :)
2000-2008 Paxil for a situational depression
2008 - Paxil c/t
Severe protracted WD syndrome ever since; improving


“The only reason for time is so that everything doesn't happen at once”
Albert Einstein

"Add signature to your profile. This way we can help you even better!"
Surviving Antidepressants ;)

And, above all, ... keep walking. Just keep walking.

#17 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 30 May 2011 - 02:28 PM

The forum for rants is now called Do-It-Yourself Editorials.
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#18 ajay

ajay

    Silver star

  • Members
  • PipPipPip
  • 139 posts
  • LocationGreater Boston Area

Posted 01 August 2011 - 03:20 AM

How about a section/topic on finding a good therapist, doctor, or program? I know many on this site are, understandably, anti-psychiatry and anti-therapy. I realize this could be tricky. Many doctors may prefer not to be listed in a public forum or may not be taking new patients. And maybe I'm just looking for the impossible. It could be a place for something as simple as suggestions for what to ask when you're meeting a new therapist, reassurance that it may take a few interviews before you find someone who's a good fit for you, how to stop if you realize it's not a good fit, etc.
History is approximate; I didn't track my dosages.

1995 - started zoloft/sertraline for depression
1995-2008 - sertraline ranged from 100-200mg, may have gone as high as 250mg
2006 - 2009 - added welbutrin/budeprion SR, 150 mg
sometime in 2009-2010 - stopped budeprion c/t
sometime around 2009-2010, Tapered down sertraline w/o guidance to 50 mg, then 25mg.
~ feb 2010, stopped sertraline.
~ Apr 2010, resumed 25mg low dose (really bad business trip)
Oct 2010, stopped sertraline
Jan 2011 - another bad business trip "breaks" my sleep.

current issues include insomnia, anxiety, GI distress, depression.
Taking multivitamins, Vitamin D, fish oil, Chinese herbs, ~ 0.5mg melatonin in the evening.
Going to therapy and acupuncture once a week.

#19 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 01 August 2011 - 03:19 PM

Great idea, ajay. I hope we can develop a list of resources.

I started and pinned this topic: Recommended doctors, therapists, or clinics in the Symptoms and What Helps forum.
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#20 Barbarannamated

Barbarannamated

    Platinum star

  • Members
  • PipPipPipPipPip
  • 4,179 posts
  • LocationSouthern California

Posted 07 October 2011 - 07:43 PM

Perhaps this has been covered somewhere. Please direct me if so. It would be interesting and good documentation to list as many 'original' symptoms of our depression and why we began meds and a list of withdrawal symptoms, esp protracted w/d. This difference is important to me personally b/c it feels often as if I am really losing it until I realize that some bizarre feeling or thought is likely a neuroemotion. I believe it is also good documentation to refute those who say the symptoms are a relapse or unmasking of some other medicatable illness. (is that a word?)
Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

#21 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 08 October 2011 - 07:46 AM

That's a great idea, Bar. In the forum site format, it would have to be posts where people contribute their histories. We've got that covered in the Introductions forum.

There are many papers about withdrawal symptoms in the Journals forum. There's a link to them here Important topics about symptoms, including sleep problems

It would be great if someone could make a composite list of symptoms as listed in these papers with notes about how people actually report them (e.g. how people describe depersonalization) so readers could understand the medical terminology.

Any volunteers?
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#22 Tom

Tom

    Member

  • Members
  • PipPip
  • 54 posts
  • LocationSt. Louis, MO

Posted 09 November 2011 - 10:21 PM

I think there should be a main forum, like "general discussion," or whatever. And maybe fewer forums. It seems too fragmented to me.
Approximately 18 years on Effexor. Tapered for more than two years. Totally off of Effexor since late Oct. 2010.

#23 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 10 November 2011 - 04:55 PM

Which forums would you combine or delete, Tom?
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#24 Tom

Tom

    Member

  • Members
  • PipPip
  • 54 posts
  • LocationSt. Louis, MO

Posted 10 November 2011 - 11:49 PM

Well, that's a good question, and I'm not sure. But I ran forum sites for several years, and the approach I and many others took was that the smaller the membership, the fewer forums. And then expand it as the membership grows and the need for more sections arises. I'm not saying that it has do be done that way, but that a lot of people have had success doing it that way. Also, the thing I like about having a main forum is it seems like a good place to go when you not are sure what to do or where to post. And it acts like a central location for most of the forum's activity. Anyway, that's my two cents and may or may not be worth a damn. :)
Approximately 18 years on Effexor. Tapered for more than two years. Totally off of Effexor since late Oct. 2010.

#25 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 11 November 2011 - 08:22 AM

Thanks, Tom. I appreciate your interest and experience. The reason this site did not start with a "general discussion" forum is that, from what I've seen from many years on similar sites, people having worrisome symptoms post repetitively in Gen Disc asking for help because their questions get lost. That's why the central forum here is Introductions, so each person can post his or her history once, ask questions about his or her condition, and not have to repeat the same information all over the site. History is all in one place. Each person can review advice and track his or her progress. I can see a reason for Gen Disc for miscellaneous discussions that don't fit well in any of the other forums, but it would be a larger challenge to the moderators when newbies start asking questions about their symptoms there. We'd have to be sorting out the posts and moving them to Intro. We do have the members-only Off-Topic forum for casual discussion. On other forum sites, is it possible they start with Gen Disc because 1) It's built into the software, 2) It's traditional, 3) The site starter doesn't have a clear picture of content divisions at the beginning? From what I've seen, such sites then add content divisions when Gen Disc needs sorting out. I've reorganized the forums, does this make more sense? The forums Rants and Opinions and Taking Action -- would it make sense to combine them? If so, what should this be called?
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#26 Shanti

Shanti

    Gold star

  • Members
  • PipPipPipPip
  • 1,091 posts
  • LocationNorthern California

Posted 11 November 2011 - 08:41 AM

I really like how you just arranged the forums. One thing I suggest is people to put a link to their intro in their signature, as I have done. It can help us get a clearer idea of whats going on with them when they post in other forums.
Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.
Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)
My Paxil Website
My Intro

#27 Barbarannamated

Barbarannamated

    Platinum star

  • Members
  • PipPipPipPipPip
  • 4,179 posts
  • LocationSouthern California

Posted 11 November 2011 - 12:16 PM

Excellent idea, Shanti. Could you and Bar help remind people to do that?

A job! I have a job!!

Sorry for that emotional outburst. ;o
Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

#28 Tom

Tom

    Member

  • Members
  • PipPip
  • 54 posts
  • LocationSt. Louis, MO

Posted 11 November 2011 - 10:04 PM


The reason this site did not start with a "general discussion" forum is that, from what I've seen from many years on similar sites, people having worrisome symptoms post repetitively in Gen Disc asking for help because their questions get lost.

That's why the central forum here is Introductions, so each person can post his or her history once, ask questions about his or her condition, and not have to repeat the same information all over the site. History is all in one place. Each person can review advice and track his or her progress.

I can see a reason for Gen Disc for miscellaneous discussions that don't fit well in any of the other forums, but it would be a larger challenge to the moderators when newbies start asking questions about their symptoms there. We'd have to be sorting out the posts and moving them to Intro.



Here are some of my thoughts on this...

I think some people don't want to participate like that. They just want to ask a question or express something. I think some people are so confused, scared, stressed, etc., and/or have been on so many different meds and/or have such complicated health problems that they can't even think straight enough to give and accurate picture or history. I've been a member at countless forums over the years, and nearly all of them had an introductions section. And guess what? I've almost never posted an intro. I'm shy like that. Sometimes, I only join a forum for one very specific question, and I will never go back. I posted an intro here, because it almost seems mandatory and I wasn't really sure how to participate without doing it.

Also, why can't I ask a question about a problem or symptom other than in one thread, my introductory thread? How many people are paying attention to that thread? What I'm thinking is that I want a main section so that I can ask something where the most eyeballs will see it. Headlines are what get links clicked and threads opened. Which is gonna get more attention, "I can't take this horrible Sciatica anymore," or a new post in a thread called "Hello from Tom," that's been sitting there forever?

I think I understand where you are coming from, and it is just a different approach than I'm used to. I don't even know if what I'm saying makes sense. It's hard to communicate this stuff in writing. I think you are doing a fine job here, but that your approach may be a little more structured or something than I'm used to. Or perhaps I'm just reading too much into it, lol. My brain has been through a lot in the last few years, and I may be somewhat inflexible. Just thinking clearly enough to write these three paragraphs is more than I've been able to do for some time. Seriously.



On other forum sites, is it possible they start with Gen Disc because 1) It's built into the software, 2) It's traditional, 3) The site starter doesn't have a clear picture of content divisions at the beginning?

From what I've seen, such sites then add content divisions when Gen Disc needs sorting out.


Yes to all of the above, but the upside is that it gives people fewer options and funnels them into one place. I think people can miss out on a lot of good content because they don't visit a section that looks uninteresting. For example, I may not normally be interested in scientific papers and such, but there may be some killer information in there somewhere.

And yes, in my approach, sections are added when content divisions present themselves. For example, let's say I have a forum about politics and in the main discussion, every other thread turns out to be about Bill Clinton, then I will add a forum about him. But if there is a thread about George Bush only every once in a while, then I'm not going to add a forum for him.

Again, these are just my opinions, I'm not the authority on forums.




I've reorganized the forums, does this make more sense?

The forums Rants and Opinions and Taking Action -- would it make sense to combine them? If so, what should this be called?



Yes, I like what you've done. I certainly don't see the harm in combining those two forums. And if you do, "Rants, Opinions, and Taking Action" would probably work. :D
Approximately 18 years on Effexor. Tapered for more than two years. Totally off of Effexor since late Oct. 2010.

#29 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 12 November 2011 - 10:31 AM

Tom, I understand exactly what you're saying. In another life, I was involved in site design.

If you want to ask a question about a symptom, the Symptoms forum is the place to do it.

If you want to ask a question about tapering, the Tapering forum is the place to do it.

If you want to talk about your particular situation, the Intro forum is the place to do it.

This site is not just a social site. There's a lot of good information that needs to be put in identifiable sections so people, including guests, can find it. This is also a reference site.

The Intro topics serve as informal case histories. I am trying all the time to bring doctors to this site and educate them about the difficulties of withdrawal and the reality of prolonged withdrawal syndrome. I give them the link to the Intro section so they can see what patients are going through.

If those stories were scattered all over Gen Disc -- which I know for a fact they would be -- doctors would not have the patience to read them. They would not be taken seriously.

Also, if someone is having a problem with say, tapering off Lexapro, they can find similar stories in the Intro section. People can understand how symptoms change and gradually resolve.

Anyone who posts an Intro topic is contributing to the general knowledge about withdrawal syndrome. Those Intro topics are extremely valuable to all of us.

Now, for a place to just hang out in, Off-Topic, which is for members-only and can't be read by guests, doesn't seem to be getting much traffic. I expect after a while, with more active members, it will be more active. (This site only started last March.)

So the usability issue has at least four sides -- how to address the needs of people who are hurting, how to satisfy preferences for people like yourself (and I know you're not the only one who would like to "hide" in Gen Disc), how to make information readily findable for everyone, and how to make the site relatively easy to moderate.
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#30 Barbarannamated

Barbarannamated

    Platinum star

  • Members
  • PipPipPipPipPip
  • 4,179 posts
  • LocationSouthern California

Posted 12 November 2011 - 11:38 AM

Uh oh. So, if a certain MD checks in, he can see my remarks on a study/review he's done??
Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

#31 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 12 November 2011 - 02:31 PM

Bar, anybody can see info in the public forums using search. If you've said something about a certain MD, and that person is searching on his or her name, it's possible your comment will appear in Google. If someone knows your screen name, it's possible that person can read anything you've posted here publicly.
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#32 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 05 April 2012 - 03:57 PM

I'm thinking of combining the Taking Action and Rants & Opinions forums into one forum called Events, Actions, Reactions. This would be a general current events and opinions area. What do you think?
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#33 Romido

Romido

    Member

  • Members
  • PipPip
  • 81 posts
  • LocationCa

Posted 24 May 2012 - 10:04 PM

A suggestion...a question I had in the earlier hellish days when my problems with a dis regulated nervous system started, I just wanted to know HOW LONG would it be this bad!?! I see a lot of new people coming and asking about early symptoms and such. Anyway, my suggestion is to have Threads that talk about "what the first month contains" or "months six to nine" so we can get some perspective on the path healing takes. I notice that my symptoms have changed over time, so maybe it would be possible to share what's happening against a timeline of our recovery. When I read posts I always think to myself "how far along are they?" Not exactly sure of an effective way to execute this idea, but it's a suggestion! :D

#34 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 25 May 2012 - 07:28 AM

Good idea, Romido. How about starting such a thread in Symptoms?
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

#35 Barbarannamated

Barbarannamated

    Platinum star

  • Members
  • PipPipPipPipPip
  • 4,179 posts
  • LocationSouthern California

Posted 09 June 2012 - 12:53 PM

Perhaps a subgroup of members in UK (or other) to assist one another in working with NHS.
Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

#36 Altostrata

Altostrata

    Administrator

  • Administrators
  • PipPipPipPipPipPip
  • 24,078 posts
  • LocationSan Francisco, CA

Posted 09 June 2012 - 01:01 PM

Great idea. Please open a topic in Events, actions, opinions and invite our UK folks over there. You may have to invite them one by one.
This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.