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I'm not sure if this has been done yet but because PGAD is such a scary result of AD's I thought it would be really helpful to people¬†who are¬†fearing or developing it if anyone with a PGAD success story would reply here! ūüôā

 

I have one of my own but I'm not sure if it counts because it turned out to be anxiety induced. When I tappered from 30mg to 0mg in just a week, I began to get a HUGE fear of PGAD (I didn't know it was a withdrawal effect of Ad's at the time). So much that i began to get extremely real feeling symptoms of it. The more I read, the more symptoms I got and sometimes I would get symptoms I hadn't read about until I got them which was even scarier. I had tons of scans and specilists and doctor visits until I finally (after about 7 months) convinced myself that I didn't actually have it - it was all psychosomatic. It took about 3 months of double checking/rebound worries etc but it finally went away completely!

 

When I upped my dose I then convinced myself that I had it again. This time was so much worse and I was convinced it was real this time, I had to stay in bed almost every day because of how bad it felt! I had it almost 24/7 and it went on for a year, then one day, I had it very badly as usual, but something snapped me out of it (my boyfriend proposed to me !) The symptoms just vanished instantly.. looking back that day, I managed to convince myself even more that these symptoms were psychosomatic too and they never came back since! This has happened to me 2 more times but they've gone away alot quicker now so I guess my anxiety was getting better! (Until now that I've finally reached 0 with withdrawing again lol..)

 

I hope that might help some people who also have psychostomatic/anxiety induced PGAD (or any condition really). Would love to hear everyone elses success stories whether it was real PGAD or anxiety induced! ūüôā

5.14: Took Paxil (??mg) for a week or 2 but came off cold turkey. 2 random spikes of pgad in the space of 3 months.

8.14: Started Citalopram (10mg) / 8?.14: Quickly upped to 20mg  / 9?.15: upped to 30mg. 

8.16: Tapered off Citalopram in less than 2 weeks / 9.16: straight back on 20mg for just a week then stopped cold turkey

7.12.16: Took Amitriptyline 10mg for just 2 days then stopped cold turkey

14.12.16: reinstated 5mg of Citalopram / 1?.16: 10mg Citalopram / ?.16: 20mg Citalopram. 3.17 (6 months since withdrawing) random waves of pgad lasting hours every 3 months.

8.2.18: 15mg Citalopram / 8.3.18: 10mg / 8.4.18: 5mg / 12?.5.18: 2.5mg / 19.5.18: 0. Random mildish pgad, all sorts of PN symptoms, earworm, tinnitus, other things, coming and going until 10.18 (5 months since withdrawal) where it blew up in intensity for another 1.11 years (with windows).

1.9.20: 99% healed¬†‚̧ԳŹ

31.5.21: Smoked weed 5 out of 9 days. Random mild pgad, other old withdrawals coming back each day.¬†ūü§¶‚Äć‚ôÄÔłŹ

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Just wondering...what is PGAD?

2002-2016: 20 mg paxil - tapered over a 9-month period with prozac bridge.

 

Continued with prozac, tapering 10 mg over a 3-month period until quitting in December 2016. Severe depression 3 months later. 

 

300 mg wellbutrin, 7.5 mg remeron and 100 mg zoloft at end of 2017 to present.

 

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2 hours ago, KayM said:

what is PGAD

 

Persistent genital arousal disorder

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Plodding along inch by inch:  12" = 1',  3' =  36 " or 1 yard,  1760 yards  = 63,360" or 1 mile

Current from July 2021:  Pristiq 0.13mg

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering Oct 2015 

My tapering program   My Intro (goes to my tapering graph)  My website

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

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my symptoms of this that people name as "pgad" started weeks after discontinuing the drug, I didnt even knew abou it, so, wasnt psychosomatic. a year later I can tell that Im 98% free, sometimes I feel a little thing in the area but its rare and very mild ūüėÉ

Paroxetine 40mg from 2005 to 2013,
between 2007 - 2009 I stopped cold turkey, no problems, less than a week with brain zaps and thats it
2009 started taking Paroxetine again
2013 easy transition to Lexapro 15mg + Wellbutrin XL 300
2015 dropped Wellbutrin without problems
04/2017 transition to Pristiq taking 7,5mg of Lexapro + 25mg of Pristiq, than dropped Lexapro
bad things starting,
05/2017 stopped Pristiq, being in hell!

05/14/2017 -> Most of the symptoms ceased, constant arousal like sensation and erectyle disfunction appeared. Anxietys on the roof, dread thoughts. Using a little bit of bromazepam.
Reinstated LexaPro + Wellbutrin
08/2017 -> tappered fast both
05/2018 -> SEVERE worsening, keep getting worse

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  • 4 weeks later...
  • Moderator Emeritus

I suffered from horrific, painful PGAD that started several months after I was off meds.  I was shocked when it started up because I did not have it when all my other WD symptoms hit.  PGAD was a WD symptom that hit me way later.  It was definitely not psychosomatic.  

Now I'm four years off meds and honestly can't remember when my last PGAD episode was, which is a sign that it's been a really, REALLY long time since it's happened to me.

I'm not sure if this info helps or not, but I'm female. 

*I'm not a doctor and don't give medical advice, just personal experience
**Off all meds since Nov. 2014. Mentally & emotionally recovered; physically not
-Dual cold turkeys off TCA & Ativan in Oct 2014. Prescribed from 2011-2014

-All meds were Rxed off-label for an autoimmune illness.  It was a MISDIAGNOSIS, but I did not find out until AFTER meds caused damage.  All med tapers/cold turkeys directed by doctors 

-Nortriptyline May 2012 - Dec 2013. Cold turkey off nortrip & cold switched to desipramine

-Desipramine Jan 2014 - Oct. 29, 2014 (rapid taper/cold turkey)

-Lorazepam 1 mg per night during 2011
-Lorazepam 1 mg per month in 2012 (or less)

-Lorazepam on & off, Dec 2013 through Aug 2014. Didn't exceed 3x a week

-Lorazepam again in Oct. 2014 to help get off of desipramine. Last dose lzpam was 1 mg, Nov. 2, 2014. Immediate paradoxical reactions to benzos after stopping TCAs 

-First muscle/dystonia side effects started on nortriptyline, but docs too stupid to figure it out. On desipramine, muscle tremors & rigidity worsened

-Two weeks after I got off all meds, I developed full-blown TD.  Tardive dystonia, dyskinesia, myoclonic jerks ALL over body, ribcage wiggles, facial tics, twitching tongue & fingers, tremors/twitches of arms, legs, cognitive impairment, throat muscles semi-paralyzed & unable to swallow solid food, brain zaps, ears ring, dizzy, everything looks too far away, insomnia, numbness & electric shocks everywhere when I try to fall asleep, jerk awake from sleep with big, gasping breaths, wake with terrors & tremors, severely depressed.  NO HISTORY OF DEPRESSION, EVER. Meds CREATED it.

-Month 7: hair falling out; no vision improvement; still tardive dystonia; facial & tongue tics returned
-Month 8: back to acute, incl. Grand Mal seizure-like episodes. New mental torment, PGAD, worse insomnia
-Month 9: tardive dystonia worse, dyskinesia returned. Unable to breathe well due to dystonia in stomach, chest, throat
-Month 13: Back to acute, brain zaps back, developed eczema & stomach problems. Left leg no longer works right due to dystonia, meaning both legs now damaged
-7 years off: Huge improvements, incl. improved dystonia

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On 6/11/2018 at 12:56 AM, ShadowMan said:

my symptoms of this that people name as "pgad" started weeks after discontinuing the drug, I didnt even knew abou it, so, wasnt psychosomatic. a year later I can tell that Im 98% free, sometimes I feel a little thing in the area but its rare and very mild ūüėÉ

 

3 hours ago, WiggleIt said:

I suffered from horrific, painful PGAD that started several months after I was off meds.  I was shocked when it started up because I did not have it when all my other WD symptoms hit.  PGAD was a WD symptom that hit me way later.  It was definitely not psychosomatic.  

Now I'm four years off meds and honestly can't remember when my last PGAD episode was, which is a sign that it's been a really, REALLY long time since it's happened to me.

I'm not sure if this info helps or not, but I'm female. 

Did you both have any strange symptoms before the PGAD started? I keep having a feeling of urine/fluid stuck in my urethra, just wondering if that's the beginning of it? So glad to hear you're both better, that's amazing! :)

5.14: Took Paxil (??mg) for a week or 2 but came off cold turkey. 2 random spikes of pgad in the space of 3 months.

8.14: Started Citalopram (10mg) / 8?.14: Quickly upped to 20mg  / 9?.15: upped to 30mg. 

8.16: Tapered off Citalopram in less than 2 weeks / 9.16: straight back on 20mg for just a week then stopped cold turkey

7.12.16: Took Amitriptyline 10mg for just 2 days then stopped cold turkey

14.12.16: reinstated 5mg of Citalopram / 1?.16: 10mg Citalopram / ?.16: 20mg Citalopram. 3.17 (6 months since withdrawing) random waves of pgad lasting hours every 3 months.

8.2.18: 15mg Citalopram / 8.3.18: 10mg / 8.4.18: 5mg / 12?.5.18: 2.5mg / 19.5.18: 0. Random mildish pgad, all sorts of PN symptoms, earworm, tinnitus, other things, coming and going until 10.18 (5 months since withdrawal) where it blew up in intensity for another 1.11 years (with windows).

1.9.20: 99% healed¬†‚̧ԳŹ

31.5.21: Smoked weed 5 out of 9 days. Random mild pgad, other old withdrawals coming back each day.¬†ūü§¶‚Äć‚ôÄÔłŹ

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On 7/5/2018 at 9:06 AM, Rbvdk said:

 

Did you both have any strange symptoms before the PGAD started? I keep having a feeling of urine/fluid stuck in my urethra, just wondering if that's the beginning of it? So glad to hear you're both better, that's amazing! :)


Came out of nowhere, without any warning

Paroxetine 40mg from 2005 to 2013,
between 2007 - 2009 I stopped cold turkey, no problems, less than a week with brain zaps and thats it
2009 started taking Paroxetine again
2013 easy transition to Lexapro 15mg + Wellbutrin XL 300
2015 dropped Wellbutrin without problems
04/2017 transition to Pristiq taking 7,5mg of Lexapro + 25mg of Pristiq, than dropped Lexapro
bad things starting,
05/2017 stopped Pristiq, being in hell!

05/14/2017 -> Most of the symptoms ceased, constant arousal like sensation and erectyle disfunction appeared. Anxietys on the roof, dread thoughts. Using a little bit of bromazepam.
Reinstated LexaPro + Wellbutrin
08/2017 -> tappered fast both
05/2018 -> SEVERE worsening, keep getting worse

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  • 5 months later...

Just wanna bump this. :)

5.14: Took Paxil (??mg) for a week or 2 but came off cold turkey. 2 random spikes of pgad in the space of 3 months.

8.14: Started Citalopram (10mg) / 8?.14: Quickly upped to 20mg  / 9?.15: upped to 30mg. 

8.16: Tapered off Citalopram in less than 2 weeks / 9.16: straight back on 20mg for just a week then stopped cold turkey

7.12.16: Took Amitriptyline 10mg for just 2 days then stopped cold turkey

14.12.16: reinstated 5mg of Citalopram / 1?.16: 10mg Citalopram / ?.16: 20mg Citalopram. 3.17 (6 months since withdrawing) random waves of pgad lasting hours every 3 months.

8.2.18: 15mg Citalopram / 8.3.18: 10mg / 8.4.18: 5mg / 12?.5.18: 2.5mg / 19.5.18: 0. Random mildish pgad, all sorts of PN symptoms, earworm, tinnitus, other things, coming and going until 10.18 (5 months since withdrawal) where it blew up in intensity for another 1.11 years (with windows).

1.9.20: 99% healed¬†‚̧ԳŹ

31.5.21: Smoked weed 5 out of 9 days. Random mild pgad, other old withdrawals coming back each day.¬†ūü§¶‚Äć‚ôÄÔłŹ

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  • ChessieCat changed the title to PGAD success stories?
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cathyfrench posted this in her intro topic:

 

11 hours ago, cathyfrench said:

Hi India,

 

Thank you for your kind message. I agree with you that psychiatry can be extremelly dangerous and SSRIs are strong medications that shouldn't be given  so easily. Unfortunatly I noticed that most doctors i saw in my PGAD and tinnitus Journey don't know the side effects and the withdrawal side effects of benzos and antidepressants so instead of helping you withdrawing they give people more and more psychotropic drugs making them worse instead of being better because they mistake withdrawal symptoms for psychiatric symptoms.

 

Istill have PGAD and tinnitus unfortunatly. it has been 20 months now that I coldturkeyed Xanax and was put on the antideprrssant SSRI Sertraline.  When I was on sertraline and 6 months after stopping it, I used to have an hyperactive bladder and a urologit told me that he has many patients with an hyperactive bladder that are on antidepressants. Thanks to pelvic physiotherapy, I don't have an overactive and painfull bladder anymore (alongside with a non acidic diet and I take aloe vera)but I still have PGAD.  My PGAD is really mild now and it is really not as bad as before (the first months after stopping sertraline were hell). I am at the end of my Xanax tapper (I was put back on Xanax after my sertraline,risperidone and Anafranil short experience) and I think Xanax was making my PGAD worse,now that I neraly stopped it,my PAGD flare are not as strong as before.  I am the patient of a very good pudnedal nerve specialist who has several patients with PGAD (but I am her first with a PGAD caused by an antidepressant). She gave me tens (ankle and auricular tens), physiotherapy. I go to acupuncturer and I did some auriculotherapy. For my specialist my PGAD is caused by an sympathetic nervous system to active (basically the autonomous nervous system is ill) and a parasympathic nervous system that is too quiet. I have belly breathing exercices and tens to try to stimulate the vagus nerve and in return it stimulates the parasympathetic nervous system and quiets down the parasympathetic nervous system. It helps. I also got ganglion impar nerve block to quiet down the genital nerves in nerve and it also helped. I also use ice to quiet down the flare and the overactive sympathetic nerve.

 

I read Mad in America and I found their articles really good.  The website Riysk has also run a series of articles on PGAD and there are some petitions organised at the moment to have sexual dysfunction and PGAD written as a side effects from SSRIs and SNRIS on these medication's safety notice in the US and in Europe. One petition was sent to the FDA and another one to the European Medication Agency. https://rxisk.org/wp-content/uploads/2018/06/JRS745-1.pdf.

 

Good articles onPGAD

https://rxisk.org/pgad-clitoridectomy-or-ect/

 

I hope yo will get better.

 

Take care

 

Cathy

 

NEW!!!     INTERVIEW with Altostrata, SA's founder    NEW!!! 

 

Plodding along inch by inch:  12" = 1',  3' =  36 " or 1 yard,  1760 yards  = 63,360" or 1 mile

Current from July 2021:  Pristiq 0.13mg

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering Oct 2015 

My tapering program   My Intro (goes to my tapering graph)  My website

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

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  • 3 months later...

My sister who had pgad, slow/weak urine flow,¬†restless leg syndrome And akathesia has now healed. :) she was on citalopram for 2 years, withdrew in 10s each month (she was on 40mg) and a year later from 0 she's better. ūüôā

5.14: Took Paxil (??mg) for a week or 2 but came off cold turkey. 2 random spikes of pgad in the space of 3 months.

8.14: Started Citalopram (10mg) / 8?.14: Quickly upped to 20mg  / 9?.15: upped to 30mg. 

8.16: Tapered off Citalopram in less than 2 weeks / 9.16: straight back on 20mg for just a week then stopped cold turkey

7.12.16: Took Amitriptyline 10mg for just 2 days then stopped cold turkey

14.12.16: reinstated 5mg of Citalopram / 1?.16: 10mg Citalopram / ?.16: 20mg Citalopram. 3.17 (6 months since withdrawing) random waves of pgad lasting hours every 3 months.

8.2.18: 15mg Citalopram / 8.3.18: 10mg / 8.4.18: 5mg / 12?.5.18: 2.5mg / 19.5.18: 0. Random mildish pgad, all sorts of PN symptoms, earworm, tinnitus, other things, coming and going until 10.18 (5 months since withdrawal) where it blew up in intensity for another 1.11 years (with windows).

1.9.20: 99% healed¬†‚̧ԳŹ

31.5.21: Smoked weed 5 out of 9 days. Random mild pgad, other old withdrawals coming back each day.¬†ūü§¶‚Äć‚ôÄÔłŹ

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  • 1 year later...

Just want to read new success stories. Anybody?

25 November 2020 - 22 December 2020 - Zoloft (3 weeks - 12.5 mg, 1 week - 25 mg); 1 January 2021 - Zoloft (12.5 mg)

18-24 December 2020 - Teraligen 2.5 mg-3.75 mg (Russian antipsychotic)

18-28 December 2020 - Eglonil 100 mg (Sulpiride)

 

Supplements: magnesium

 

Symptoms since stopping Zoloft: overactive/painful bladder, pelvic pressure, PGAD, severe anxiety

 

 

 

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