Jump to content

Funding a study and research initiative


Recommended Posts

As we all continue to suffer and nothing has yet been found that really helps eliminate WD has anyone tried to get a study or some research initiatives started? I'm talking about doing something similiar to what the Propecia guys have done. I am extremely impressed with what they have managed to pull off in terms of getting university sponsored research and studies and engaging the medical community for help.

 

Until what happens in WD is better understood we are all at the mercy of father time.

Paxil 10mg 2004-2011

7.5mg 4months

5mg. 4months

2.5mg.8 months no wd issues

Dropped pax 4-10-12

5-9-12 started prozac to alleviate symptoms (no relief)

5-22-12 reinstated paxil 2.5mg

5-28-12 5mg pax (couldn't tolerate sides)

6-22-12 Pax 2.5

6-30-12 Pax O

Cerebrolysin to help with wd at 29 months. Horrible decision much worse.

Still suffering sever Brain fog, Confusion, slow thinking,And just feeling sick and weird (hard to explain),facial twitching, weakness, shaking and jerking

Link to post
Share on other sites
Vonnegutjunky

There are some people at universities studying wd- don't know if they are doing any studies on how to curb the effects - Fava from university of Bologna Italy is one of them- I am planning on writing him a letter to see if he can offer us some guidance - but I agree o think we could proactively do something about this

 

*Currently at 3.3mg off my 10mg pill of Paxil (they actually weigh 12.5mg) so I’m around 7.4 mg 

*No other supplements or vitamins 

*Taper schedule in the pdf 

Blank.pdf

 

https://docs.google.com/document/d/1-5vShtJtwAOGA30OxIP87steLmMdFzD29F0fzAPD564

Link to post
Share on other sites

Take a look at the propecia support site. The amount of research they are funding is mind boggling.

Paxil 10mg 2004-2011

7.5mg 4months

5mg. 4months

2.5mg.8 months no wd issues

Dropped pax 4-10-12

5-9-12 started prozac to alleviate symptoms (no relief)

5-22-12 reinstated paxil 2.5mg

5-28-12 5mg pax (couldn't tolerate sides)

6-22-12 Pax 2.5

6-30-12 Pax O

Cerebrolysin to help with wd at 29 months. Horrible decision much worse.

Still suffering sever Brain fog, Confusion, slow thinking,And just feeling sick and weird (hard to explain),facial twitching, weakness, shaking and jerking

Link to post
Share on other sites

it might be worth a try to crowdfund some SSRI withdrawl research.  that's the power of the internet.  it gives power to the people.  if there's a crowdfunding initiative i will definitely make a donation

I think its a great idea

March 5, 6  2015 1 10mg Paxil each day - only 2 pills total - experienced huge tingle in my head on first pill

 

numbness in my hands and feet, skin less sensitive over all... not ticklish anymore

**anhedonia, blank emotions

PSSD, anorgasmia

heartbeat rhythm problems

"To err is human.  To really foul things up requires a psychiatrist."

http://survivingantidepressants.org/index.php?/topic/8554-akakoom-lost-in-no-mans-land/

 

"When you are going through hell, keep going" - Winston Churchill (the only way out is through)

Link to post
Share on other sites

it might be worth a try to crowdfund some SSRI withdrawl research.  that's the power of the internet.  it gives power to the people.  if there's a crowdfunding initiative i will definitely make a donation

I think its a great idea

 

Great idea but we would need someone with medical ties to lead the effort and organize the research. Glenmullen from Harvard comes to mind.

Paxil 10mg 2004-2011

7.5mg 4months

5mg. 4months

2.5mg.8 months no wd issues

Dropped pax 4-10-12

5-9-12 started prozac to alleviate symptoms (no relief)

5-22-12 reinstated paxil 2.5mg

5-28-12 5mg pax (couldn't tolerate sides)

6-22-12 Pax 2.5

6-30-12 Pax O

Cerebrolysin to help with wd at 29 months. Horrible decision much worse.

Still suffering sever Brain fog, Confusion, slow thinking,And just feeling sick and weird (hard to explain),facial twitching, weakness, shaking and jerking

Link to post
Share on other sites

Glenmullen is a good choice. His book was the first to convince me I was having a drug problem and had a drug problem for many years. 

WARNING THIS WILL BE LONG
Had a car accident in 85
Codeine was the pain med when I was release from hosp continuous use till 89
Given PROZAC by a specialist to help with nerve pain in my leg 89-90 not sure which year
Was not told a thing about it being a psych med thought it was a pain killer no info about psych side effects I went nuts had hallucinations. As I had a head injury and was diagnosed with a concussion in 85 I was sent to a head injury clinic in 1990 five years after the accident. I don't think they knew I had been on prozac I did not think it a big deal and never did finish the bottle of pills. I had tests of course lots of them. Was put into a pain clinic and given amitriptyline which stopped the withdrawal but had many side effects. But I could sleep something I had not done in a very long time the pain lessened. My mother got cancer in 94 they switched my meds to Zoloft to help deal with this pressure as I was her main care giver she died in 96. I stopped zoloft in 96 had withdrawal was put on paxil went nutty quit it ct put on resperidol quit it ct had withdrawal was put on Effexor... 2years later celexa was added 20mg then increased to 40mg huge personality change went wild. Did too fast taper off Celexa 05 as I felt unwell for a long time prior... quit Effexor 150mg ct 07 found ****** 8 months into withdrawal learned some things was banned from there in 08 have kept learning since. there is really not enough room here to put my history but I have a lot of opinions about a lot of things especially any of the drugs mentioned above.
One thing I would like to add here is this tidbit ALL OPIATES INCREASE SEROTONIN it is not a huge jump to being in chronic pain to being put on an ssri/snri and opiates will affect your antidepressants and your thinking.

As I do not update much I will put my quit date Nov. 17 2007 I quit Effexor cold turkey. 

http://survivingantidepressants.org/index.php?/topic/1096-introducing-myself-btdt/

There is a crack in everything ..That's how the light gets in :)

Link to post
Share on other sites

finasteride, 

... been trying to think of it and found it today... it causes men to grow boobs too just like antidepressants... it is not fat but glandular material making breasts larger in woman this is often painful ... got the tshirt... 

There is apparently a class action lawsuit ... 

again these drugs have some common denominators sexual dysfunction boobs for guys and gals... host of others... 

oh and if you get depressed about the boobs or no sex it is advised you take an antidepressant... 

 

I forgot the link

http://www.propeciahelp.com/

This is interesting:

 

  • Observations performed in a subset of subjects treated with finasteride (an inhibitor of the enzyme 5α-reductase) for male pattern hair loss seem to indicate that sexual dysfunction as well as anxious/depressive symptomatology may occur at the end of the treatment and continue after discontinuation."

 

  • "A possible hypothesis to explain depression symptoms after finasteride treatment might be impairment in the levels of neuroactive steroids. Therefore, neuroactive steroid levels were evaluated in paired plasma and cerebrospinal fluid samples obtained from male patients who received finasteride for the treatment of androgenic alopecia and who, after drug discontinuation, still show long-term sexual side effects as well as anxious/depressive symptomatology."

 

  • " Assessment of neuroactive steroid levels in patients showed some interindividual differences. However, the most important finding was the comparison of their neuroactive steroid levels with those of healthy controls. Indeed, decreased levels of tetrahydroprogesterone, isopregnanolone and dihydrotestosterone and increased levels of testosterone and 17β-estradiol were reported in cerebrospinal fluid of postfinasteride patients. Moreover, decreased levels of dihydroprogesterone and increased levels of 5α-androstane-3α,17β-diol and 17β-estradiol were observed in plasma."

 

  • "The present observations confirm that an impairment of neuroactive steroid levels, associated with depression symptoms, is still present in androgenic alopecia patients treated with finasteride despite the discontinuation of the treatment."

WARNING THIS WILL BE LONG
Had a car accident in 85
Codeine was the pain med when I was release from hosp continuous use till 89
Given PROZAC by a specialist to help with nerve pain in my leg 89-90 not sure which year
Was not told a thing about it being a psych med thought it was a pain killer no info about psych side effects I went nuts had hallucinations. As I had a head injury and was diagnosed with a concussion in 85 I was sent to a head injury clinic in 1990 five years after the accident. I don't think they knew I had been on prozac I did not think it a big deal and never did finish the bottle of pills. I had tests of course lots of them. Was put into a pain clinic and given amitriptyline which stopped the withdrawal but had many side effects. But I could sleep something I had not done in a very long time the pain lessened. My mother got cancer in 94 they switched my meds to Zoloft to help deal with this pressure as I was her main care giver she died in 96. I stopped zoloft in 96 had withdrawal was put on paxil went nutty quit it ct put on resperidol quit it ct had withdrawal was put on Effexor... 2years later celexa was added 20mg then increased to 40mg huge personality change went wild. Did too fast taper off Celexa 05 as I felt unwell for a long time prior... quit Effexor 150mg ct 07 found ****** 8 months into withdrawal learned some things was banned from there in 08 have kept learning since. there is really not enough room here to put my history but I have a lot of opinions about a lot of things especially any of the drugs mentioned above.
One thing I would like to add here is this tidbit ALL OPIATES INCREASE SEROTONIN it is not a huge jump to being in chronic pain to being put on an ssri/snri and opiates will affect your antidepressants and your thinking.

As I do not update much I will put my quit date Nov. 17 2007 I quit Effexor cold turkey. 

http://survivingantidepressants.org/index.php?/topic/1096-introducing-myself-btdt/

There is a crack in everything ..That's how the light gets in :)

Link to post
Share on other sites

WARNING THIS WILL BE LONG
Had a car accident in 85
Codeine was the pain med when I was release from hosp continuous use till 89
Given PROZAC by a specialist to help with nerve pain in my leg 89-90 not sure which year
Was not told a thing about it being a psych med thought it was a pain killer no info about psych side effects I went nuts had hallucinations. As I had a head injury and was diagnosed with a concussion in 85 I was sent to a head injury clinic in 1990 five years after the accident. I don't think they knew I had been on prozac I did not think it a big deal and never did finish the bottle of pills. I had tests of course lots of them. Was put into a pain clinic and given amitriptyline which stopped the withdrawal but had many side effects. But I could sleep something I had not done in a very long time the pain lessened. My mother got cancer in 94 they switched my meds to Zoloft to help deal with this pressure as I was her main care giver she died in 96. I stopped zoloft in 96 had withdrawal was put on paxil went nutty quit it ct put on resperidol quit it ct had withdrawal was put on Effexor... 2years later celexa was added 20mg then increased to 40mg huge personality change went wild. Did too fast taper off Celexa 05 as I felt unwell for a long time prior... quit Effexor 150mg ct 07 found ****** 8 months into withdrawal learned some things was banned from there in 08 have kept learning since. there is really not enough room here to put my history but I have a lot of opinions about a lot of things especially any of the drugs mentioned above.
One thing I would like to add here is this tidbit ALL OPIATES INCREASE SEROTONIN it is not a huge jump to being in chronic pain to being put on an ssri/snri and opiates will affect your antidepressants and your thinking.

As I do not update much I will put my quit date Nov. 17 2007 I quit Effexor cold turkey. 

http://survivingantidepressants.org/index.php?/topic/1096-introducing-myself-btdt/

There is a crack in everything ..That's how the light gets in :)

Link to post
Share on other sites

There is a class action in the us as well.

Paxil 10mg 2004-2011

7.5mg 4months

5mg. 4months

2.5mg.8 months no wd issues

Dropped pax 4-10-12

5-9-12 started prozac to alleviate symptoms (no relief)

5-22-12 reinstated paxil 2.5mg

5-28-12 5mg pax (couldn't tolerate sides)

6-22-12 Pax 2.5

6-30-12 Pax O

Cerebrolysin to help with wd at 29 months. Horrible decision much worse.

Still suffering sever Brain fog, Confusion, slow thinking,And just feeling sick and weird (hard to explain),facial twitching, weakness, shaking and jerking

Link to post
Share on other sites

For some reason I searched Glenmullen to see if he had anything new I have never watched him in action tho I have read his books.  I found a utube video and was curious to took a look.  Here he is speaking about the data showing increased suicide in 18-24 yr old but also 45-65 yr olds saying if the study was better it would likely indicate all age groups.  This is from 2013 not sure what I was doing then but completely missed whatever this event was about.  Tired now may look another time. 

here is the link if anyone would like to take a look and yes I know it is off topic...sorry about that but it is a topic near and dear. 

 

Good night.

WARNING THIS WILL BE LONG
Had a car accident in 85
Codeine was the pain med when I was release from hosp continuous use till 89
Given PROZAC by a specialist to help with nerve pain in my leg 89-90 not sure which year
Was not told a thing about it being a psych med thought it was a pain killer no info about psych side effects I went nuts had hallucinations. As I had a head injury and was diagnosed with a concussion in 85 I was sent to a head injury clinic in 1990 five years after the accident. I don't think they knew I had been on prozac I did not think it a big deal and never did finish the bottle of pills. I had tests of course lots of them. Was put into a pain clinic and given amitriptyline which stopped the withdrawal but had many side effects. But I could sleep something I had not done in a very long time the pain lessened. My mother got cancer in 94 they switched my meds to Zoloft to help deal with this pressure as I was her main care giver she died in 96. I stopped zoloft in 96 had withdrawal was put on paxil went nutty quit it ct put on resperidol quit it ct had withdrawal was put on Effexor... 2years later celexa was added 20mg then increased to 40mg huge personality change went wild. Did too fast taper off Celexa 05 as I felt unwell for a long time prior... quit Effexor 150mg ct 07 found ****** 8 months into withdrawal learned some things was banned from there in 08 have kept learning since. there is really not enough room here to put my history but I have a lot of opinions about a lot of things especially any of the drugs mentioned above.
One thing I would like to add here is this tidbit ALL OPIATES INCREASE SEROTONIN it is not a huge jump to being in chronic pain to being put on an ssri/snri and opiates will affect your antidepressants and your thinking.

As I do not update much I will put my quit date Nov. 17 2007 I quit Effexor cold turkey. 

http://survivingantidepressants.org/index.php?/topic/1096-introducing-myself-btdt/

There is a crack in everything ..That's how the light gets in :)

Link to post
Share on other sites
  • 2 weeks later...

I think the first thing needed is an epidemiologic study, a survey of the population that asks about AD use, and what happened after stopping. Right now there is still widespread disbelief. The talking heads of mainstream psychiatry are invested in keeping this secret.

2009: Cancer hospital said I had adjustment disorder because I thought they were doing it wrong. Their headshrinker prescribed Effexor, and my life set on a new course. I didn't know what was ahead, like a passenger on Disneyland's Matterhorn, smiling and waving as it climbs...clink, clink, clink.

2010: Post surgical accidental Effexor discontinuation by nurses, masked by intravenous Dilaudid. (The car is balanced at the top of the track.) I get home, pop a Vicodin, and ...

Whooosh...down, down, down, down, down...goes the trajectory of my life, up goes my mood and tendency to think everything is a good idea.
2012: After the bipolar jig was up, now a walking bag of unrelated symptoms, I went crazy on Daytrana (the Ritalin skin patch by Noven), because ADHD was a perfect fit for a bag of unrelated symptoms. I was prescribed Effexor for the nervousness of it, and things got neurological. An EEG showed enough activity to warrant an epilepsy diagnosis rather than non-epileptic ("psychogenic") seizures.

:o 2013-2014: Quit everything and got worse. I probably went through DAWS: dopamine agonist withdrawal syndrome. I drank to not feel, but I felt a lot: dread, fear, regret, grief: an utter sense of total loss of everything worth breathing about, for almost two years.

I was not suicidal but I wanted to be dead, at least dead to the experience of my own brain and body.

2015: I  began to recover after adding virgin coconut oil and organic grass-fed fed butter to a cup of instant coffee in the morning.

I did it hoping for mental acuity and better memory. After ten days of that, I was much better, mood-wise. Approximately neutral.

And, I experienced drowsiness. I could sleep. Not exactly happy, I did 30 days on Wellbutrin, because it had done me no harm in the past. 

I don't have the DAWS mood or state of mind. It never feel like doing anything if it means standing up.

In fact, I don't especially like moving. I'm a brain with a beanbag body.   :unsure:

Link to post
Share on other sites

Even with an epidemiological study study design would be important.  I think it takes some time for some of use to move beyond the ashes and see the damage and a lot of people don't get it when they are doing the on and off drug rounds.  It takes some time to get clear of the wreckage there are so many pitfalls in this if the study designer is not aware of all the pits falling in and never getting out could actually set this entire area of healing back decades. 

Even those of us who think we know cause we have lived and breathed this for years from the inside out would not be believed by most study designers getting heard is job one that has been an uphill battle even for the most obvious of these issues.  

For instance there are those who have issues that others don't.. lets say just now they look rare but if they were looked at closely I bet they are there in most wd folks just in a lesser degree or they were handled differently depending on the supports available so they did not become the big even of a persons life so to speak. 

 

Glenmullen may be a good choice but I am not sure where the other input would come from we are seriously seeing these drugs hit an all time high as the marketing machine is in full swing now for schools and the general populations is inundated with ads focusing on mental health from babies to the aged... All the while the drugs they are really promoting behind all the glitter will cause mental health issues and health problems for millions.  

 

We are late... very late and I don't see us catching up any time soon I don't even think it is possible to stop the machine at this point. I know forgive my bad attitude but in my country this is what I see it is everywhere. 

As I write this I am forced to deal with a line out of a song... How you suffered for you sanity... 

yep the crazy are made sane and the real craiesy run the world the baby goes out with the bathwater all while nobody listened. 

WARNING THIS WILL BE LONG
Had a car accident in 85
Codeine was the pain med when I was release from hosp continuous use till 89
Given PROZAC by a specialist to help with nerve pain in my leg 89-90 not sure which year
Was not told a thing about it being a psych med thought it was a pain killer no info about psych side effects I went nuts had hallucinations. As I had a head injury and was diagnosed with a concussion in 85 I was sent to a head injury clinic in 1990 five years after the accident. I don't think they knew I had been on prozac I did not think it a big deal and never did finish the bottle of pills. I had tests of course lots of them. Was put into a pain clinic and given amitriptyline which stopped the withdrawal but had many side effects. But I could sleep something I had not done in a very long time the pain lessened. My mother got cancer in 94 they switched my meds to Zoloft to help deal with this pressure as I was her main care giver she died in 96. I stopped zoloft in 96 had withdrawal was put on paxil went nutty quit it ct put on resperidol quit it ct had withdrawal was put on Effexor... 2years later celexa was added 20mg then increased to 40mg huge personality change went wild. Did too fast taper off Celexa 05 as I felt unwell for a long time prior... quit Effexor 150mg ct 07 found ****** 8 months into withdrawal learned some things was banned from there in 08 have kept learning since. there is really not enough room here to put my history but I have a lot of opinions about a lot of things especially any of the drugs mentioned above.
One thing I would like to add here is this tidbit ALL OPIATES INCREASE SEROTONIN it is not a huge jump to being in chronic pain to being put on an ssri/snri and opiates will affect your antidepressants and your thinking.

As I do not update much I will put my quit date Nov. 17 2007 I quit Effexor cold turkey. 

http://survivingantidepressants.org/index.php?/topic/1096-introducing-myself-btdt/

There is a crack in everything ..That's how the light gets in :)

Link to post
Share on other sites
×
×
  • Create New...

Important Information

Terms of Use Privacy Policy