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Persistent genital arousal disorder (PGAD)


spidey
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my pgad symptoms have stopped for now. it must have been from tappering from too fast. hi alto , we have spoken about mirtz. being sexually stimulating, but i have not had any symptoms until recent mirtz cut. the sympoms appeared 4-5days later after i made the cut from 22.5mg to 15mg. the sympoms were mild and would come and go. because this happened when i took zoloft, i always wonder whether mirtz has masked the symptoms. i guess i will find out in couple months time when i get of mirtz. can you get protracted withdrawral symptoms even if you are taking another ad? thank you all the best to you all.

DRUG HISTORY:

 

November 2013- Zoloft, ( Bad reaction).

January 2014 - March 2014 Seroquel.( Quit Cold Turkey).

January2014- Mirtazapine, I was taking 15mg at one stage, reduced to 7.5mg, Pgad reactions to Mirtazapine. Doctor kept increasing it to 37.5mg, until July 2014. No improvement, experiencing panic attacks, on 37.5 mg. I had enough by October 2014. Began tapering.

October 2014- Started tapering Mirtazapine from 37.5mg.

September 2015- Down to 4mg of Mirtazapine. Crashed.

September 16th- Up dosed to 5mg. Held this dose for almost 5 months. Stabilised.

February 2016- Began tapering again. From 5mg to 4.5mg of Mirtazapine. (Rocking the boat, again)! Lol. :(

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Yes, you can get withdrawal symptoms even if you are on another AD.

 

PGAD can be both an adverse effect and a withdrawal symptom. The drug causes a perturbation of your hormones either way.

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.

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thank you alto.

DRUG HISTORY:

 

November 2013- Zoloft, ( Bad reaction).

January 2014 - March 2014 Seroquel.( Quit Cold Turkey).

January2014- Mirtazapine, I was taking 15mg at one stage, reduced to 7.5mg, Pgad reactions to Mirtazapine. Doctor kept increasing it to 37.5mg, until July 2014. No improvement, experiencing panic attacks, on 37.5 mg. I had enough by October 2014. Began tapering.

October 2014- Started tapering Mirtazapine from 37.5mg.

September 2015- Down to 4mg of Mirtazapine. Crashed.

September 16th- Up dosed to 5mg. Held this dose for almost 5 months. Stabilised.

February 2016- Began tapering again. From 5mg to 4.5mg of Mirtazapine. (Rocking the boat, again)! Lol. :(

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It's the uncertainty and the not knowing that eats away at me.

 

I've been taking the clonazepam when I'm feeling desperate but that has some undesirable side effects. Just wish someone could at least put a timescale on my PGAD symptoms.

 

It's been so bad lately I'm considering trying the amitriptyline. 5 months and I've been trying to cope with this and it's pushed me to new lows I never knew existed.

 

I realise I'm repeating myself a lot.

December 2008 Prescribed 20mg citalopram (celexa) for depression and OCD.July 2013 stopped taking citalopram (celexa). November 2013 reinstated citalopram (celexa) following replapse at 20mg for 4 weeks, 40mg for 4 weeks and tapered off over 4 weeks as my condition had deteriorated. February 2014 started 20mg of fluoxetine (prozac). Didn't tolerate it and stopped 4 weeks later, experienced no withdrawal. May 2014 started 25mg of sertraline (zoloft), increased to 50mg after 1 week. Remained at 50mg for 4 weeks before increasing to 100mg at the request of my psychiatrist despite advising of suicidal ideation for an additional week before stopping. Advised to drop to 50mg for 3 days before withdrawing altogether. I did as advised and horrendous withdrawal ensued. 11th August 2014 commenced escitalopram (lexapro), weaned off end of October 2014. Commenced Clonazepam December 2014 0.5mg twice daily, switched to Diazepam 10mg twice daily with a view to tapering of the benzodiazepine altogether. Tapering schedule presently at a reduction of 1mg of Diazepam every 1-2 weeks depending upon side effects. So far experienced no severe physical side effects except worsening of PGAD symptoms upon reduction which does seem to improve within a few days of doing so. Presently taking no antidepressants however still experiencing mild agitation, severe depression and PGAD which is currently being treated by a physiotherapist.

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I've developed PGAD while on Zoloft and Doxepin.  I have just started a very slow taper of both.  I had tried to crossover the Doxepin to a water taper but when I hit 70% water, I got horrific akathisia which has now mutated inot PGAD.  Is it possible to have this resolve as I taper down on the two a/d's?

1971-81  Valium 5mg c/t PAWS     1992- through now Zoloft 25mg    2003-05 Valium 12mg Slow Taper Off

2013 Afrin Exposure to CNS    2013 O/D Val 230mg    2013 Doxepin 50mg Clonidine 2mg Zoloft 25mg

3/15/16  Doxepin 49mg Micro Tapering  Zoloft 24.3mg Holding taper

3/15/16 Clonidine mg 0.1 1/2 -    Decreasing incrementally.  DISCONTINUED

10/9/16  Doxepin 48.9  Zoloft 24.3  Clonidine  01.10  Continuing micro taper on Doxepin.

11/16/16 Doxepin 48mg  Zoloft 24.3mg  Clonidine 1.30mg

5/4/17  Doxepin 45mg  Zoloft 24mg  Clonidine 1.20mg   Micro taper of Doxepin  , Clonidine

01/13/19  Doxepin 45mg   Zoloft 21mg   Will start Micro taper of Doxepin 2/19

12/21/21  Doxepin 20 mg ?  Reducing using water micro taper--Pulling 24ml from 75ml

12/2121   Zoloft .060 grams by weight--HOLDING (info from post added by CC: On 12/21/21 my dosage was .060grams by weight or 20mg. )

26 Apr 2022 - Zoloft at -0-

 

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J Sex Marital Ther. 2008;34(2):150-9. doi: 10.1080/00926230701636205.

 

Persistent genital arousal disorder in women: case reports of association with anti-depressant usage and withdrawal.

Leiblum SR1, Goldmeier D.

 

Abstract http://www.ncbi.nlm.nih.gov/pubmed/18224549

 

Little is known with certitude about the triggers of persistent genital arousal disorder (PGAD) in women, although there appears to be certain common features of the disorder. Women complain of unbidden feelings of genital arousal that are qualitatively different from sexual arousal that is preceded by sexual desire/and or subjective arousal. The majority of women find PGAD distressing and report only brief relief with orgasm. In this article, we describe five women who believe they developed PGAD either after withdrawing from selective serotonin reuptake inhibitor (SSRI) anti-depressants or while using them. We discuss these sexual symptoms in relation to what is already known about prolonged SSRI withdrawal syndromes and the possible etiologies of these conditions. While not a common cause of PGAD, it is possible that use of, and withdrawal from, pharmacological agents contributes to the development of PGAD.

" after withdrawing from selective serotonin reuptake inhibitor (SSRI) anti-depressants or while using them."

I did not think there were any other symptoms and I certainly did not think this would be one of them. Yet here it is.  Just like Mamma I had no clue this was a symptom.  I had it when I was on zoloft and after I quit taking it.  There use to be a drug on the market called ornaide I am sorry I can't begin to recall how it was spelled it was an over the counter drug...for colds or something.  Some doctor along the way sorry don't recall which one told me to take this to relieve the pressure in and around my pelvic region and it did work... however they took that otc drug off the market. 

I tried pharma drugs too... urispas may be another wrong name but it was like that given by a specialist long long ago I can't recall if it worked or not. This was my first attempt to treat it.. I guess it did not work or I would not have tried the ornade. 

I had it again later on when I was on effexor it was very different with effexor and celexa together... 

I am going to have to give this more thought I had no clue this was a symptom of antidepressants.  

I am curious what to learn what a tarlov cyst looks like on a cat scan and I wonder if there are other terms to describe it.  I guess I have something else to research.  

One more thing I am curious about is restless leg yes I have had that but I have something different now in my one foot...I have foot pain that seems neurological to me I wonder about the wrestless leg and how these two symptoms relates... I will stop wondering now and do some research.  Just when you think you heard it all something else comes up. 

peace should be my focus maybe your too...just a reminder.

 

Can I ask how long did you have the PGAD after stopping the Zoloft and did you taper the Zoloft at all?  I am on Zoloft and just developed PGAD which is extreme and have just started a very very slow taper.

1971-81  Valium 5mg c/t PAWS     1992- through now Zoloft 25mg    2003-05 Valium 12mg Slow Taper Off

2013 Afrin Exposure to CNS    2013 O/D Val 230mg    2013 Doxepin 50mg Clonidine 2mg Zoloft 25mg

3/15/16  Doxepin 49mg Micro Tapering  Zoloft 24.3mg Holding taper

3/15/16 Clonidine mg 0.1 1/2 -    Decreasing incrementally.  DISCONTINUED

10/9/16  Doxepin 48.9  Zoloft 24.3  Clonidine  01.10  Continuing micro taper on Doxepin.

11/16/16 Doxepin 48mg  Zoloft 24.3mg  Clonidine 1.30mg

5/4/17  Doxepin 45mg  Zoloft 24mg  Clonidine 1.20mg   Micro taper of Doxepin  , Clonidine

01/13/19  Doxepin 45mg   Zoloft 21mg   Will start Micro taper of Doxepin 2/19

12/21/21  Doxepin 20 mg ?  Reducing using water micro taper--Pulling 24ml from 75ml

12/2121   Zoloft .060 grams by weight--HOLDING (info from post added by CC: On 12/21/21 my dosage was .060grams by weight or 20mg. )

26 Apr 2022 - Zoloft at -0-

 

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  • 3 weeks later...

I have this but it came on with akathisia and I am still on 25mg Zoloft and 50mg Doxepin.  I did a partial crossover to liquid on my Doxepin and that's when this started.  It comes and goes, sometimes I have general akathisia and sometimes I have PGAD.  I recently went a week w/o either.  Is there anyone who had this start when ON a/d's, tapered very slowly and then had it abate?  Or is the usual course to have it worsen as you get to the lower dose?

1971-81  Valium 5mg c/t PAWS     1992- through now Zoloft 25mg    2003-05 Valium 12mg Slow Taper Off

2013 Afrin Exposure to CNS    2013 O/D Val 230mg    2013 Doxepin 50mg Clonidine 2mg Zoloft 25mg

3/15/16  Doxepin 49mg Micro Tapering  Zoloft 24.3mg Holding taper

3/15/16 Clonidine mg 0.1 1/2 -    Decreasing incrementally.  DISCONTINUED

10/9/16  Doxepin 48.9  Zoloft 24.3  Clonidine  01.10  Continuing micro taper on Doxepin.

11/16/16 Doxepin 48mg  Zoloft 24.3mg  Clonidine 1.30mg

5/4/17  Doxepin 45mg  Zoloft 24mg  Clonidine 1.20mg   Micro taper of Doxepin  , Clonidine

01/13/19  Doxepin 45mg   Zoloft 21mg   Will start Micro taper of Doxepin 2/19

12/21/21  Doxepin 20 mg ?  Reducing using water micro taper--Pulling 24ml from 75ml

12/2121   Zoloft .060 grams by weight--HOLDING (info from post added by CC: On 12/21/21 my dosage was .060grams by weight or 20mg. )

26 Apr 2022 - Zoloft at -0-

 

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I have this but it came on with akathisia and I am still on 25mg Zoloft and 50mg Doxepin.  I did a partial crossover to liquid on my Doxepin and that's when this started.  It comes and goes, sometimes I have general akathisia and sometimes I have PGAD.  I recently went a week w/o either.  Is there anyone who had this start when ON a/d's, tapered very slowly and then had it abate?  Or is the usual course to have it worsen as you get to the lower dose?

1971-81  Valium 5mg c/t PAWS     1992- through now Zoloft 25mg    2003-05 Valium 12mg Slow Taper Off

2013 Afrin Exposure to CNS    2013 O/D Val 230mg    2013 Doxepin 50mg Clonidine 2mg Zoloft 25mg

3/15/16  Doxepin 49mg Micro Tapering  Zoloft 24.3mg Holding taper

3/15/16 Clonidine mg 0.1 1/2 -    Decreasing incrementally.  DISCONTINUED

10/9/16  Doxepin 48.9  Zoloft 24.3  Clonidine  01.10  Continuing micro taper on Doxepin.

11/16/16 Doxepin 48mg  Zoloft 24.3mg  Clonidine 1.30mg

5/4/17  Doxepin 45mg  Zoloft 24mg  Clonidine 1.20mg   Micro taper of Doxepin  , Clonidine

01/13/19  Doxepin 45mg   Zoloft 21mg   Will start Micro taper of Doxepin 2/19

12/21/21  Doxepin 20 mg ?  Reducing using water micro taper--Pulling 24ml from 75ml

12/2121   Zoloft .060 grams by weight--HOLDING (info from post added by CC: On 12/21/21 my dosage was .060grams by weight or 20mg. )

26 Apr 2022 - Zoloft at -0-

 

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Hi SelmaLady,

 

In November I experienced mild PGAD symptoms when I tapered from 22.5 to 15mg of Mirtazapine. It lasted for about a week. Then it stoped. I originally experienced PGAD symptoms from starting Zoloft.  How are you doing?

DRUG HISTORY:

 

November 2013- Zoloft, ( Bad reaction).

January 2014 - March 2014 Seroquel.( Quit Cold Turkey).

January2014- Mirtazapine, I was taking 15mg at one stage, reduced to 7.5mg, Pgad reactions to Mirtazapine. Doctor kept increasing it to 37.5mg, until July 2014. No improvement, experiencing panic attacks, on 37.5 mg. I had enough by October 2014. Began tapering.

October 2014- Started tapering Mirtazapine from 37.5mg.

September 2015- Down to 4mg of Mirtazapine. Crashed.

September 16th- Up dosed to 5mg. Held this dose for almost 5 months. Stabilised.

February 2016- Began tapering again. From 5mg to 4.5mg of Mirtazapine. (Rocking the boat, again)! Lol. :(

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Wow, I just found this forum, and it has been incredibly useful for me! Its really nice to know I'm not the only one dealing with this issue.

 

I actually just saw a Urologist for my issues with PGAD, and he said that he knows Dr. Goldstein very well, and that he does treat PGAD specifically, but that he also treats a variety of other issues. This being said, he does not focus entirely on Pelvic Pain Issues (My urologist said PGAD falls under that category). I've heard of this doctor named Jerome Weiss in San Francisco at the Pacific Center for Pelvic Pain, and I scheduled an appointment with him. Apparently he sees plenty of both women and men with PGAD, which surprised me, because as a male with PGAD I thought I was pretty much alone. My urologist actually recommended I see him over Dr. Goldstein, because Dr. Weiss is more focused in the right area.

 

I do have a question for anyone out there about treatment for PGAD symptoms. My urologist prescribed me Elavil (or Amitriptyline), because apparently it has helped people in the past. I've even seen a couple of posts on here about that drug helping. So here is my question: Has anyone experienced symptoms getting worse before they get better when taking a drug that may help PGAD symptoms? I want to give Elavil a good try, but if it makes my symptoms worse initially, then does that mean it will just not work at all, period? My urologist wants me to give it a try for a month, but I don't want to be on it for a month if my PGAD is much worse the whole time

 

I know antidepressants can take up to 4 weeks to fully work, but is that true for alleviating PGAD symptoms? I tried Cymbalta already, and it made the symptoms so much worse that I couldn't take it for more than a few days. But I'm not sure if the "pain" relieving affects of Cymbalta would take longer to kick in than whatever aspect of the drug was making it worse. Please let me know if you guys have any personal experience, or advice in this situation.

I wouldn't recommend going on tricyclic antidepressants (such as Elavil) for anything. They were given to me for bladder problems after a pelvic muscle injury and they are exactly what's landed me in this site.

 

What you guys and gals could all look into is something called pelvic floor physical therapy, which helps release the muscle tension in that area (non-sexually, even though the therapists do pit their fingers down there), which alleviates some of the pressure on the nerves, which alleviates some of the symptoms.

 

I go to pelvic floor physical therapy 1-2 times per week and it helps with my bladder issues and pelvic pain and I know that PGAD is something that this type of PT tries to treat. I'm not sure with the outcome of treatment would be when the PGA D is caused by medication, but at least it is a non-medicinal option to try.

*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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Wow, I just found this forum, and it has been incredibly useful for me! Its really nice to know I'm not the only one dealing with this issue.

 

I actually just saw a Urologist for my issues with PGAD, and he said that he knows Dr. Goldstein very well, and that he does treat PGAD specifically, but that he also treats a variety of other issues. This being said, he does not focus entirely on Pelvic Pain Issues (My urologist said PGAD falls under that category). I've heard of this doctor named Jerome Weiss in San Francisco at the Pacific Center for Pelvic Pain, and I scheduled an appointment with him. Apparently he sees plenty of both women and men with PGAD, which surprised me, because as a male with PGAD I thought I was pretty much alone. My urologist actually recommended I see him over Dr. Goldstein, because Dr. Weiss is more focused in the right area.

 

I do have a question for anyone out there about treatment for PGAD symptoms. My urologist prescribed me Elavil (or Amitriptyline), because apparently it has helped people in the past. I've even seen a couple of posts on here about that drug helping. So here is my question: Has anyone experienced symptoms getting worse before they get better when taking a drug that may help PGAD symptoms? I want to give Elavil a good try, but if it makes my symptoms worse initially, then does that mean it will just not work at all, period? My urologist wants me to give it a try for a month, but I don't want to be on it for a month if my PGAD is much worse the whole time

 

I know antidepressants can take up to 4 weeks to fully work, but is that true for alleviating PGAD symptoms? I tried Cymbalta already, and it made the symptoms so much worse that I couldn't take it for more than a few days. But I'm not sure if the "pain" relieving affects of Cymbalta would take longer to kick in than whatever aspect of the drug was making it worse. Please let me know if you guys have any personal experience, or advice in this situation.

I wouldn't recommend going on tricyclic antidepressants (such as Elavil) for anything. They were given to me for bladder problems after a pelvic muscle injury and they are exactly what's landed me in this site.

 

What you guys and gals could all look into is something called pelvic floor physical therapy, which helps release the muscle tension in that area (non-sexually, even though the therapists do pit their fingers down there), which alleviates some of the pressure on the nerves, which alleviates some of the symptoms.

 

I go to pelvic floor physical therapy 1-2 times per week and it helps with my bladder issues and pelvic pain and I know that PGAD is something that this type of PT tries to treat. I'm not sure with the outcome of treatment would be when the PGA D is caused by medication, but at least it is a non-medicinal option to try.

 

Thank you Wiggle.  Do you know what kind of tx they would do?  Is there some way I could find out what the exercises are?

1971-81  Valium 5mg c/t PAWS     1992- through now Zoloft 25mg    2003-05 Valium 12mg Slow Taper Off

2013 Afrin Exposure to CNS    2013 O/D Val 230mg    2013 Doxepin 50mg Clonidine 2mg Zoloft 25mg

3/15/16  Doxepin 49mg Micro Tapering  Zoloft 24.3mg Holding taper

3/15/16 Clonidine mg 0.1 1/2 -    Decreasing incrementally.  DISCONTINUED

10/9/16  Doxepin 48.9  Zoloft 24.3  Clonidine  01.10  Continuing micro taper on Doxepin.

11/16/16 Doxepin 48mg  Zoloft 24.3mg  Clonidine 1.30mg

5/4/17  Doxepin 45mg  Zoloft 24mg  Clonidine 1.20mg   Micro taper of Doxepin  , Clonidine

01/13/19  Doxepin 45mg   Zoloft 21mg   Will start Micro taper of Doxepin 2/19

12/21/21  Doxepin 20 mg ?  Reducing using water micro taper--Pulling 24ml from 75ml

12/2121   Zoloft .060 grams by weight--HOLDING (info from post added by CC: On 12/21/21 my dosage was .060grams by weight or 20mg. )

26 Apr 2022 - Zoloft at -0-

 

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Wow, I just found this forum, and it has been incredibly useful for me! Its really nice to know I'm not the only one dealing with this issue.

 

I actually just saw a Urologist for my issues with PGAD, and he said that he knows Dr. Goldstein very well, and that he does treat PGAD specifically, but that he also treats a variety of other issues. This being said, he does not focus entirely on Pelvic Pain Issues (My urologist said PGAD falls under that category). I've heard of this doctor named Jerome Weiss in San Francisco at the Pacific Center for Pelvic Pain, and I scheduled an appointment with him. Apparently he sees plenty of both women and men with PGAD, which surprised me, because as a male with PGAD I thought I was pretty much alone. My urologist actually recommended I see him over Dr. Goldstein, because Dr. Weiss is more focused in the right area.

 

I do have a question for anyone out there about treatment for PGAD symptoms. My urologist prescribed me Elavil (or Amitriptyline), because apparently it has helped people in the past. I've even seen a couple of posts on here about that drug helping. So here is my question: Has anyone experienced symptoms getting worse before they get better when taking a drug that may help PGAD symptoms? I want to give Elavil a good try, but if it makes my symptoms worse initially, then does that mean it will just not work at all, period? My urologist wants me to give it a try for a month, but I don't want to be on it for a month if my PGAD is much worse the whole time

 

I know antidepressants can take up to 4 weeks to fully work, but is that true for alleviating PGAD symptoms? I tried Cymbalta already, and it made the symptoms so much worse that I couldn't take it for more than a few days. But I'm not sure if the "pain" relieving affects of Cymbalta would take longer to kick in than whatever aspect of the drug was making it worse. Please let me know if you guys have any personal experience, or advice in this situation.

I wouldn't recommend going on tricyclic antidepressants (such as Elavil) for anything. They were given to me for bladder problems after a pelvic muscle injury and they are exactly what's landed me in this site.

 

What you guys and gals could all look into is something called pelvic floor physical therapy, which helps release the muscle tension in that area (non-sexually, even though the therapists do pit their fingers down there), which alleviates some of the pressure on the nerves, which alleviates some of the symptoms.

 

I go to pelvic floor physical therapy 1-2 times per week and it helps with my bladder issues and pelvic pain and I know that PGAD is something that this type of PT tries to treat. I'm not sure with the outcome of treatment would be when the PGA D is caused by medication, but at least it is a non-medicinal option to try.

 

Thank you Wiggle.  Do you know what kind of tx they would do?  Is there some way I could find out what the exercises are?

 

Well, cancel that.  I just did some online research and its recommended that women with PGAD NOT do pelvic floor exercises as the problem with PGAD involves contractions and adding more would not be helpful...  What was recommended was of course, benzos.  Also TENS Don't think that would be advisable in a dysregulated brain chemistry...

1971-81  Valium 5mg c/t PAWS     1992- through now Zoloft 25mg    2003-05 Valium 12mg Slow Taper Off

2013 Afrin Exposure to CNS    2013 O/D Val 230mg    2013 Doxepin 50mg Clonidine 2mg Zoloft 25mg

3/15/16  Doxepin 49mg Micro Tapering  Zoloft 24.3mg Holding taper

3/15/16 Clonidine mg 0.1 1/2 -    Decreasing incrementally.  DISCONTINUED

10/9/16  Doxepin 48.9  Zoloft 24.3  Clonidine  01.10  Continuing micro taper on Doxepin.

11/16/16 Doxepin 48mg  Zoloft 24.3mg  Clonidine 1.30mg

5/4/17  Doxepin 45mg  Zoloft 24mg  Clonidine 1.20mg   Micro taper of Doxepin  , Clonidine

01/13/19  Doxepin 45mg   Zoloft 21mg   Will start Micro taper of Doxepin 2/19

12/21/21  Doxepin 20 mg ?  Reducing using water micro taper--Pulling 24ml from 75ml

12/2121   Zoloft .060 grams by weight--HOLDING (info from post added by CC: On 12/21/21 my dosage was .060grams by weight or 20mg. )

26 Apr 2022 - Zoloft at -0-

 

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I tried using the TENs I have in withdrwal and I would have to say I do not recommend it. It certainly did not work like it did before I hit wd.  I have done laser therapy and found that helpful for a different issue... I don't know if pt use it for this problem or not. 

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 :)

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  • Moderator Emeritus

The exercises you find online will not be helpful bc they mostly focus on contraction.  If you go into a pelvic PT office, a GOOD pelvic PT will have you lay on a table and they will insert their finger and gently massage the muscles to relax them (again, they are NOT sexually touching you.  It's internal, but they are not touching in a way to make you orgasm), which in turn theoretically relaxes the nerve signals down there, too.

 

I know my pelvic PTs work with people with PGAD, but I don't know if medicinally induced PGAD would respond any differently.

 

I seriously doubt there are any effective pelvic PT exercises for PGAD described online.  Most pelvic PT stuff that you find online focuses on Kegels, but the whole field of pelvic PT is A LOT more complex and you have to go get evaluated in person. 

 

*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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where are the posts I just made here?

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 :)

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Previously I thought posts were disappearing and now I know they are .. there is a security issue here now. 

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 :)

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Yes they absolutely are I did not know I was on to different PGAD pages I screwed up... I guess at the time I was sure I did not screw up I will be a lot more careful in the future sorry.  

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 :)

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I saw that a lot in US that they are offering such physical therapy but in Austria the doctors are not so familiar with it. But if you can give me some info what should i look for, i will ask here.

05/2013 Lyrica 100 mg / per day for pain + PGAD resulting from caesarian delivery11/2014 started to taper: 50 mg per day/ for one week then c/tafter one month reinstated at 50 mg /per days of 10 July 2015 drug free-

symptoms OCD

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  • 4 weeks later...

I don't even know how to explain what is happening to me. I know I have had PGAD, but also, I feel like my hormones or something are out of control. Dealing with the PGAD over the last seven months has really been awful, and there are days when it seems like the whole afternoon is spent trying to relieve it. I can relieve it, but it comes right back. I have had the PGAD also with what seems like some kind of hyper sexual state, which is frightening me. I think I spent a couple months in hypomania due to a paradoxical reaction to Ativan. It has since gotten better since I dosed down, but it hasn't left completely. I honestly don't know what is going on. I feel almost like I'm dealing with a compulsion. I really don't know. I think there is more than one thing occurring to create a big mess. This is awful.

 

So, a few days ago I decided that I was not going to try and relieve the PGAD or compulsion or whatever it is Im dealing with. I think it is both. So, after about four days of abstaining I ended up in a wave from hell. I don't know if my brain somehow is used to the release of neuro hormones that have been occurring with having to relieve the PGAD and now it's like some kind of withdrawal to abstain....? I'm miserable. And, I literally don't know what to do. it like now my body is used to the chemical reponse and I almost need to back off gradually to reduce a withdrawal!!!!! How did this happen to me???!! This is unbelievable! Can this even be possible?

2005-Zoloft bad reaction.....2006-Lexepro......2012-Upped Lexepro.......2013-Upped Lexepro......2/2014- Attempted Taper Lexepro...2/2014- Updosed Lexepro.......3/2014-Ativan.....5/2014- CT switch from Lexpro to Effexor.....

5/2014-7/2014-Tapered Ativan from 1mg to .25mg.....6/2014-Bad reaction to Effexor........7/2014- Rapid taper Effexor every other day......7/5/2014- Off Effexor.......7/2014-12/2014 - Ativan .25mg.......12/25/2014 -Taper Ativan by 4% due to paradoxical reaction .24mg...11/18/2015-Taper Ativan 1% CURRENTLY ON: .2376mg Ativan taken in 6 .0396mg doses.

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After coming off Zoloft sounds like I started to have PGAD.

I was feeling embarrassed and couldn't tell bout it to the doctor.

I found this forum and I'm reliefed that I could found some ppl who has a same problem.

Now I went back taking zoloft because I couldn't manage the symptom of PGAD.

I'm also horribly irritated wile I have PGAD.

In my case it sounds quiet as long as I'm taking zoloft but if I forgot to take them it occurres again.

I'm scared when I can't control it.

It is terrible.

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Hi LonarBear,

 

You should tell the doctor that this has happened to you. I got PGAD from Zoloft too. The Doctors need to know that this does happen to people because of bad reaction to SSRI's. I know how you are feeling. All the best, Hopefull.

DRUG HISTORY:

 

November 2013- Zoloft, ( Bad reaction).

January 2014 - March 2014 Seroquel.( Quit Cold Turkey).

January2014- Mirtazapine, I was taking 15mg at one stage, reduced to 7.5mg, Pgad reactions to Mirtazapine. Doctor kept increasing it to 37.5mg, until July 2014. No improvement, experiencing panic attacks, on 37.5 mg. I had enough by October 2014. Began tapering.

October 2014- Started tapering Mirtazapine from 37.5mg.

September 2015- Down to 4mg of Mirtazapine. Crashed.

September 16th- Up dosed to 5mg. Held this dose for almost 5 months. Stabilised.

February 2016- Began tapering again. From 5mg to 4.5mg of Mirtazapine. (Rocking the boat, again)! Lol. :(

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  • 3 weeks later...

I had this about a month ago. It was awful! I had no idea what was going on. I just felt physically aroused for no reason at all, my mind was on something completely different when it came on, and had the urge to relieve it as soon as possible. I was in the middle of a grocery store when it happened and literally had to go home. It was a hideous experience. It seemed to come and go and then it went all together.

 

I told my mom, and she told me that it happened to her when she went off Prozac.

 

When it comes to drugs to fix it, I would think CBT to be an option. This is a side effect of a drug or coming off of a drug, so why throw more drugs into the mix? Seems counterproductive. It may be annoying, but it is not life threatening, and I believe learning to reinterpret the sensation when it comes out of context would be a better choice than subjecting my body to more drugs.

It's back

2005-Zoloft bad reaction.....2006-Lexepro......2012-Upped Lexepro.......2013-Upped Lexepro......2/2014- Attempted Taper Lexepro...2/2014- Updosed Lexepro.......3/2014-Ativan.....5/2014- CT switch from Lexpro to Effexor.....

5/2014-7/2014-Tapered Ativan from 1mg to .25mg.....6/2014-Bad reaction to Effexor........7/2014- Rapid taper Effexor every other day......7/5/2014- Off Effexor.......7/2014-12/2014 - Ativan .25mg.......12/25/2014 -Taper Ativan by 4% due to paradoxical reaction .24mg...11/18/2015-Taper Ativan 1% CURRENTLY ON: .2376mg Ativan taken in 6 .0396mg doses.

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Dreadful.  Mine is at bay for now but I know I can't count on it never reappearing.  Yours will subside again too.  It's just so unthinkable to have this added to all that you are already trying to deal with.  I tried ice packs and sometimes that helped some.  But knowing that this will pass again for you can help to get you through it.  When I have some times of lessening symptoms, I liken it to oasis in the desert, knowing that I will be leaving it and having to face the sand in my face again.  At some point, we'll be out of this desolation.  Will be praying so hard for you. 

1971-81  Valium 5mg c/t PAWS     1992- through now Zoloft 25mg    2003-05 Valium 12mg Slow Taper Off

2013 Afrin Exposure to CNS    2013 O/D Val 230mg    2013 Doxepin 50mg Clonidine 2mg Zoloft 25mg

3/15/16  Doxepin 49mg Micro Tapering  Zoloft 24.3mg Holding taper

3/15/16 Clonidine mg 0.1 1/2 -    Decreasing incrementally.  DISCONTINUED

10/9/16  Doxepin 48.9  Zoloft 24.3  Clonidine  01.10  Continuing micro taper on Doxepin.

11/16/16 Doxepin 48mg  Zoloft 24.3mg  Clonidine 1.30mg

5/4/17  Doxepin 45mg  Zoloft 24mg  Clonidine 1.20mg   Micro taper of Doxepin  , Clonidine

01/13/19  Doxepin 45mg   Zoloft 21mg   Will start Micro taper of Doxepin 2/19

12/21/21  Doxepin 20 mg ?  Reducing using water micro taper--Pulling 24ml from 75ml

12/2121   Zoloft .060 grams by weight--HOLDING (info from post added by CC: On 12/21/21 my dosage was .060grams by weight or 20mg. )

26 Apr 2022 - Zoloft at -0-

 

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  • 2 weeks later...

All day everyday, 8 months now.

December 2008 Prescribed 20mg citalopram (celexa) for depression and OCD.July 2013 stopped taking citalopram (celexa). November 2013 reinstated citalopram (celexa) following replapse at 20mg for 4 weeks, 40mg for 4 weeks and tapered off over 4 weeks as my condition had deteriorated. February 2014 started 20mg of fluoxetine (prozac). Didn't tolerate it and stopped 4 weeks later, experienced no withdrawal. May 2014 started 25mg of sertraline (zoloft), increased to 50mg after 1 week. Remained at 50mg for 4 weeks before increasing to 100mg at the request of my psychiatrist despite advising of suicidal ideation for an additional week before stopping. Advised to drop to 50mg for 3 days before withdrawing altogether. I did as advised and horrendous withdrawal ensued. 11th August 2014 commenced escitalopram (lexapro), weaned off end of October 2014. Commenced Clonazepam December 2014 0.5mg twice daily, switched to Diazepam 10mg twice daily with a view to tapering of the benzodiazepine altogether. Tapering schedule presently at a reduction of 1mg of Diazepam every 1-2 weeks depending upon side effects. So far experienced no severe physical side effects except worsening of PGAD symptoms upon reduction which does seem to improve within a few days of doing so. Presently taking no antidepressants however still experiencing mild agitation, severe depression and PGAD which is currently being treated by a physiotherapist.

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I don't even know how to explain what is happening to me. I know I have had PGAD, but also, I feel like my hormones or something are out of control. Dealing with the PGAD over the last seven months has really been awful, and there are days when it seems like the whole afternoon is spent trying to relieve it. I can relieve it, but it comes right back. I have had the PGAD also with what seems like some kind of hyper sexual state, which is frightening me. I think I spent a couple months in hypomania due to a paradoxical reaction to Ativan. It has since gotten better since I dosed down, but it hasn't left completely. I honestly don't know what is going on. I feel almost like I'm dealing with a compulsion. I really don't know. I think there is more than one thing occurring to create a big mess. This is awful.

 

So, a few days ago I decided that I was not going to try and relieve the PGAD or compulsion or whatever it is Im dealing with. I think it is both. So, after about four days of abstaining I ended up in a wave from hell. I don't know if my brain somehow is used to the release of neuro hormones that have been occurring with having to relieve the PGAD and now it's like some kind of withdrawal to abstain....? I'm miserable. And, I literally don't know what to do. it like now my body is used to the chemical reponse and I almost need to back off gradually to reduce a withdrawal!!!!! How did this happen to me???!! This is unbelievable! Can this even be possible?

Think I've posted about this topic before, but maybe I can give some input. I've been dealing with PGAD, PSSD and headaches. The PGAD symptoms started just over two years ago for me. It was absolute hell. Non stop torture for me. No relief in sight. I used to sit at my desk at work and cross my legs and feeling constant heavy pressure "down there". I wanted to rip my hair out all the time.

I would go to the bathroom and pee in hope that I would get some relief but It would makes things so much worse and I remember wanting to bangs the walls within the bathroom stall because of anger, irritability and stress because of PGAD. If I saw a very pretty lady somewhere it would make things worse. I would masturbate in hope that I would get me some relief but that would make things much worse. It really was absolute hell every single moment of every single day. That's just to paint of picture of what PGAD was like for me.

 

It got so bad that at times I really thought about wanting to cut my Penis off just to finally make it stop. Of course I never would do it but it was so bad!

 

I still experience PGAD symptoms on a daily basis, but at the very least I've finally get relief now from PGAD. It's not gone obviously but after two long years I can tell you my PGAD has gotten better.

What's strange though is I find whenever I have a bowel movement especially in the morning it seems to really flare up my PGAD sypmtoms. I don't know why. So mornings usually aren't that good for me. Actually most mornings suck to be honest. But like I said my PGAD has improved.

 

You just have be extremely patient somehow.... it will improve. Hopefully I can eventually come back here and tell everyone my PGAD symptoms have completely disappeared along with PSSD my other symptoms of course.

 

Just try and hang in there.

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Did you take anything to help alleviate the symptoms? I'm currently taking Clonazepam .5mg twice daily.

December 2008 Prescribed 20mg citalopram (celexa) for depression and OCD.July 2013 stopped taking citalopram (celexa). November 2013 reinstated citalopram (celexa) following replapse at 20mg for 4 weeks, 40mg for 4 weeks and tapered off over 4 weeks as my condition had deteriorated. February 2014 started 20mg of fluoxetine (prozac). Didn't tolerate it and stopped 4 weeks later, experienced no withdrawal. May 2014 started 25mg of sertraline (zoloft), increased to 50mg after 1 week. Remained at 50mg for 4 weeks before increasing to 100mg at the request of my psychiatrist despite advising of suicidal ideation for an additional week before stopping. Advised to drop to 50mg for 3 days before withdrawing altogether. I did as advised and horrendous withdrawal ensued. 11th August 2014 commenced escitalopram (lexapro), weaned off end of October 2014. Commenced Clonazepam December 2014 0.5mg twice daily, switched to Diazepam 10mg twice daily with a view to tapering of the benzodiazepine altogether. Tapering schedule presently at a reduction of 1mg of Diazepam every 1-2 weeks depending upon side effects. So far experienced no severe physical side effects except worsening of PGAD symptoms upon reduction which does seem to improve within a few days of doing so. Presently taking no antidepressants however still experiencing mild agitation, severe depression and PGAD which is currently being treated by a physiotherapist.

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Nope I'm not taking anything. Just letting it heal naturally. I do take magnesium/calcium supplements from time to time to help with my headaches and neck tension when it get's really bad.

But that's it.

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No physio or acupuncture?

December 2008 Prescribed 20mg citalopram (celexa) for depression and OCD.July 2013 stopped taking citalopram (celexa). November 2013 reinstated citalopram (celexa) following replapse at 20mg for 4 weeks, 40mg for 4 weeks and tapered off over 4 weeks as my condition had deteriorated. February 2014 started 20mg of fluoxetine (prozac). Didn't tolerate it and stopped 4 weeks later, experienced no withdrawal. May 2014 started 25mg of sertraline (zoloft), increased to 50mg after 1 week. Remained at 50mg for 4 weeks before increasing to 100mg at the request of my psychiatrist despite advising of suicidal ideation for an additional week before stopping. Advised to drop to 50mg for 3 days before withdrawing altogether. I did as advised and horrendous withdrawal ensued. 11th August 2014 commenced escitalopram (lexapro), weaned off end of October 2014. Commenced Clonazepam December 2014 0.5mg twice daily, switched to Diazepam 10mg twice daily with a view to tapering of the benzodiazepine altogether. Tapering schedule presently at a reduction of 1mg of Diazepam every 1-2 weeks depending upon side effects. So far experienced no severe physical side effects except worsening of PGAD symptoms upon reduction which does seem to improve within a few days of doing so. Presently taking no antidepressants however still experiencing mild agitation, severe depression and PGAD which is currently being treated by a physiotherapist.

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No physio or acupuncture?

 

I tried accu, it helped a bit but not much. The only few things that helped me were;

 

- going outside for walks especially at a park or quiet area

- taking a long hot shower or bath

- sauna (my fitness center has one)

- and of course taking naps

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  • 2 weeks later...

I also developed PGAD after tappering sertraline. I have it for almost 2 years now. Its like a constant feeling of heaviness/dull pain down there and it never stops. It makes almost impossible to focus on anything. It may sound funny, but for me along with serious PSSD its the worst part of the withdrawal. It would make life so much easier if it would improve just a bit...

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  • 4 weeks later...

I sympathise with you completely, it's by far the worst symptom I have ever experienced. It takes everything from you, your ambition, your ability to enjoy life, family and friends, your ability to work, your personality.

 

It's unimaginable torture only I don't have to imagine it, just need to open my eyes in the morning.

December 2008 Prescribed 20mg citalopram (celexa) for depression and OCD.July 2013 stopped taking citalopram (celexa). November 2013 reinstated citalopram (celexa) following replapse at 20mg for 4 weeks, 40mg for 4 weeks and tapered off over 4 weeks as my condition had deteriorated. February 2014 started 20mg of fluoxetine (prozac). Didn't tolerate it and stopped 4 weeks later, experienced no withdrawal. May 2014 started 25mg of sertraline (zoloft), increased to 50mg after 1 week. Remained at 50mg for 4 weeks before increasing to 100mg at the request of my psychiatrist despite advising of suicidal ideation for an additional week before stopping. Advised to drop to 50mg for 3 days before withdrawing altogether. I did as advised and horrendous withdrawal ensued. 11th August 2014 commenced escitalopram (lexapro), weaned off end of October 2014. Commenced Clonazepam December 2014 0.5mg twice daily, switched to Diazepam 10mg twice daily with a view to tapering of the benzodiazepine altogether. Tapering schedule presently at a reduction of 1mg of Diazepam every 1-2 weeks depending upon side effects. So far experienced no severe physical side effects except worsening of PGAD symptoms upon reduction which does seem to improve within a few days of doing so. Presently taking no antidepressants however still experiencing mild agitation, severe depression and PGAD which is currently being treated by a physiotherapist.

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Citalopram also causes the brain to release prolactin, which may account for the increased sensitivity breast and  nipples.  For me, the prolactin caused some breast swelling and tenderness, as well as reactivating an old 'cyst' that was imaged on a mammogram 5 years ago.

 

I downloaded the updated manufacturers product monograph, and the safety testing seems to have been done in young healthy males.  Also, its' approval was based on two short term clinical trials of 6 - 8 weeks on a limited number of subjects.  That was apparently good enough for approval by the FDA and over the next 20 or so years, subsequent prescriptions to be written for about 138 million people, most of them older women who take these drugs for many years. There is great need for reform of drug approval, but what is actually happening is that more and more drugs are being 'fast-tracked' to market, often by sending patients to the FDA to plead for faster access to new drugs that may 'cure' their disease. 

 

 

 

 

Retired in  May, 2010, still working part time  as Occupational Therapist in North Toronto Community Health Clinic - 6 family practice docs + vrs allied health professionals. I was resp. for  home or clinic "Barrier-free" patient population, i.e. CP/MS/MD/spinal cord inj/disease pts.- independent living but requiring Attendant Care - power wheelchair dependent people/; also Seniors' Advisory Ctte./Advocacy staff liaison to Board; [received good evaluation on mandatory College of OT's practice review].   Otherwise, stayed active in bicycling,  gym,  yoga, walking, theatre volunteering.  Enjoyed eating out in mid-level restaurants, liked my city on Lake Ontario. Enjoyed travel to Stratford, ON, time spent with friends and on farm.    I was not on any Rx drugs, no health problems, but took lots of health food dietary vitamins and supplements - stupid me [same corporations, same profit motive, no regulation of product by governmental or other oversight body.

  • I think dietary supplement SAMe either triggered or contributed to sudden and accelerating deterioration into Parkinsonism, esp. late in 2011- I have  since found several scientific journal articles to support my opinion - all of my 5 doctors (family doc and 4 neurologists ignored it.)
  • Diagnosed at two major Toronto hospitals with "Idiopathic Parkinsonism" in early 2012.
  • Primary sympt. at that time:  rigidity, spasticity, slowness, deteriorating cursive writing, shaking arms/hands, severe burning pain in feet/knees/back, severe insomnia - no tremor at that time.
  • First Rx drug: generic sinemet [Apo-levocarb] 100/25  (3x/day) April 21, 2012. This drug was never very effective; only had ~ 1 hr ''ON" time, no matter the dose./timing. Sometimes sinemet seemed to make things worse rather than better, i.e. more muscle tone./cogwheeling/severe night sweats/low blood pressure.  
  • Next Rx drug; Zopiclone; neuro said it was NOt a  benzo., but worked on same receptors, therefore she never warned me re withdrawal problems. Took it for ~ 3 years nearly every night. Seemed to work well.
  • Third RX drug: Lorazepam. I asked Neuro for it as it seemed to make the levocarb work better and helped wth anxiety.  Neuro advised it was addictive, but never explained about tolerance, withdrawal, down-regulation of receptors. I took 0.25 mg once or twice a WEEK at first and that tiny amound helped for a day at least.
  • Fourth RX drug: Mirapex. i was still plagued by mostly "down" time with rigidity and non-movement disorders, so agreed to try Mirapex.  i never got up to the therapeutic dose (near threshold) because it made me so sick and it seemed to make things worse, i.e. more muscle tone, problems with balance, severe nausea.  Read manufacturer's monograph updated to 2012 and decided the risk was worth it, benefit unlikely.

My self-initiated withdrawals.  Every time i've changed one drug, i've had to make changes in the others too, e.g. at 20 mg Citalopram i had too much sinemet (dyskinesias) so i lowered sinemet to ~1000 mg and that was better.  Also, as Citalopram has gone down, Lorazepam has had to increase 'cause it seem not to last as long or work as well.

  • So on my own, I decided to taper off Mirapex, not knowing a thing about withdrawal problems. Whew!  Thanks to zopiclone and increased frequency and dose of Lorazepam, i got off Mirapex in March 2013.
  • Next I took myself off Zopiclone after reading very negative things about its' long-term use.  I was doing this without guidance or help from MD's. I increased sinemet and lorazepam to cope with the withdrawal effects of Zopiclone. Going off Zopiclone made PD symptoms worse; neuro wanted to put me on Entacapone, but i declined it.

More MD's/more problems with Rx drugs.

  • Zopiclone withdrawal + Incr. levocarb and incr. lorazepam landed me in the ER at CAMH, where there is a priscription drug withdrawal program, so I thought they could help me. The doctor took me off Zopiclone and Lorazepam and substituted Clonazepam alone.  From the first day Clonazepam caused frightening and serious side effects, like periods of amnesia, loss of balance, dizziness, memory problems, mental processing problems, serious nausea - worst was interdose withdrawal every 4 hours resulting in 'panic attacks' - i was jumping out of my skin!
  • Another RX drug: My own neuro gave me Citalopram to help me withdraw from Clonazepam.  Didnt work; after 2-3 weeks the Citalopram became a bigger problem with side effects than the Clonazepam. Neuro switched Lorazepam to replace the Clonazepam, but left me on the Citalopram. 
  • Rapid loss of 40 lbs of body weight into undernourished zone.
  • I ended up in ER with my forehead bashed down to the bone as a result of 'syncope'; unconscious for unknown lenght of time, probably only a few minutes. Neuro threw me under the bus - now said i needed the Citalopram for depression and Lorazepam for anxiety disorder - said there was an emotional component to my complaints and made a referral to a psychiatrist. I didnt go to him, but tried to get into a addictions/withdrawal program at that hospital, did see a 5th year psych. MD there. 
  • i got copies of last few neuro/psych reports to my family doctor - I was shocked.  I think the neuro/family doc were afraid i'd sue them or complain to the College of Physicians and Surgeons, so; they set up a 'defense' with psychiatric diagnosis to explain drug side effects and head injury, even suggested i might have 'psyhogenic' Parkinsonism.

More self-initiated withdrawal.

  • I decided to get off most dangerous drug first - Citalopram; it never made me feel anything other than sick and near invalid from side-effects.
  • Have reduced dose from 20 mgs to, recently, 5 mg.  Having a terrible time - every day seems new problem - today it was akathisia coming out of nowhere - took Benadryl - it helps.
  • Nearly house-bound now. 

Current drugs:  Citalopram (taper: 20 mg to 15 mg to 12.5 to 10 to  5 to 2.5, then zero.)  44 days at zero, getting worse side effects now than when I was 'ON' it.  Apo-Levocarb, immediate release (recent dose =1500mg) =~1250mg in 10 doses/day;/2-3 levo-carb CR/day;/Lorazepam (from 1.0 mg to 2.5 or 3, or more mg/day. Benadryl as needed. Tylenol as needed to reduce 'fever' feeling in head and/or headache. Occasional Advil.

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  • 2 weeks later...

My PGAD is caused due to the unusual and extreme tension in my pelvic floor, my pelvic floor muscles are in a hypertonic state (essentially meaning that my pelvic floor is currently unable to resume it's natural state and is sitting permanently overstretched which leads to symptoms of PGAD). There is fortunately physiotherapy for this to help it return to it's natural position and potentially cure it entirely.

 

When your pelvic floor is relaxed it's metaphorically speaking at the bottom of a ladder with ten rungs. When you have an orgasm it climbs to the 10th rung and then returns to it's natural position at the bottom of the ladder. My pelvic floor is sitting on say the 6th or 7th rung of that ladder and that presently is it's resting position. This is why I have been feeling permanently uncomfortable and experiencing that odd sensation of arousal.

 

When explained by the physio it made perfect sense.

 

Certain nerves in the pelvic floor are already being disrupted due to it's unnatural position and heightened state, therefore if you take an antidepressant which overstimulates your nervous system making these nerve's more sensitive it makes sense that you would experience a worsening of those symptoms.

 

Benzo's such as Diazepam and Clonazepam act as muscle relaxants, helping (not curing) the tension in the pelvic floor as well as desensitising the nerves themselves. This is why they have proven to be effective when trying to manage PGAD symptoms.

 

It's obviously possible for the pelvic floor to return to it's correct place in time, how long that may take I guess depends entirely on the individual. However there is help there to speed up this process, so why wait?

 

My physio doesn't know why antidepressants can cause these issues she just knows that they can and has come across it on more than one occasion. This physio has been dealing with pelvic floor problems of various different forms including PGAD for a very long time, she is very knowledgeable on PGAD regardless of causation. She seems extremely confident that she can rid me of my PGAD, prognosis for the first time ever is good.

 

It's an uncomfortable and unflattering process and there's plenty of exercises to be done at home inbetween appointments, it will take some time but I'm going to give it my all. The principle is that through exercise you will tire out and over stretch the muscle which will in return enable it to relax the way it should do and would do normally.

 

Hope this is of some help, to those unfortunate enough to find themselves with this awful debilitating condition.

December 2008 Prescribed 20mg citalopram (celexa) for depression and OCD.July 2013 stopped taking citalopram (celexa). November 2013 reinstated citalopram (celexa) following replapse at 20mg for 4 weeks, 40mg for 4 weeks and tapered off over 4 weeks as my condition had deteriorated. February 2014 started 20mg of fluoxetine (prozac). Didn't tolerate it and stopped 4 weeks later, experienced no withdrawal. May 2014 started 25mg of sertraline (zoloft), increased to 50mg after 1 week. Remained at 50mg for 4 weeks before increasing to 100mg at the request of my psychiatrist despite advising of suicidal ideation for an additional week before stopping. Advised to drop to 50mg for 3 days before withdrawing altogether. I did as advised and horrendous withdrawal ensued. 11th August 2014 commenced escitalopram (lexapro), weaned off end of October 2014. Commenced Clonazepam December 2014 0.5mg twice daily, switched to Diazepam 10mg twice daily with a view to tapering of the benzodiazepine altogether. Tapering schedule presently at a reduction of 1mg of Diazepam every 1-2 weeks depending upon side effects. So far experienced no severe physical side effects except worsening of PGAD symptoms upon reduction which does seem to improve within a few days of doing so. Presently taking no antidepressants however still experiencing mild agitation, severe depression and PGAD which is currently being treated by a physiotherapist.

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More PGAD information.

 

The pelvic floor is in a heightened and hypertonic state (abnormally tight) like a rubber band that's been pulled to it's limitation before snapping, however it can still move up and down, similar to a trampoline.

 

This is why for example, vibrations, sitting, driving in a car or riding a bike can all aggravate the already uncomfortable symptoms. Sitting causes more tension in an area that's already full of it and the vibrations you would feel from driving in a car cause rapid movement in the muscle like continually plucking a guitar string only the string is your pelvic floor muscle.

 

Repeatedly agitating the nerve endings in your lower extremities internally thus causing the odd sensation of arousal and or pain.

 

If I could draw a diagram I would but I think you get the picture.

December 2008 Prescribed 20mg citalopram (celexa) for depression and OCD.July 2013 stopped taking citalopram (celexa). November 2013 reinstated citalopram (celexa) following replapse at 20mg for 4 weeks, 40mg for 4 weeks and tapered off over 4 weeks as my condition had deteriorated. February 2014 started 20mg of fluoxetine (prozac). Didn't tolerate it and stopped 4 weeks later, experienced no withdrawal. May 2014 started 25mg of sertraline (zoloft), increased to 50mg after 1 week. Remained at 50mg for 4 weeks before increasing to 100mg at the request of my psychiatrist despite advising of suicidal ideation for an additional week before stopping. Advised to drop to 50mg for 3 days before withdrawing altogether. I did as advised and horrendous withdrawal ensued. 11th August 2014 commenced escitalopram (lexapro), weaned off end of October 2014. Commenced Clonazepam December 2014 0.5mg twice daily, switched to Diazepam 10mg twice daily with a view to tapering of the benzodiazepine altogether. Tapering schedule presently at a reduction of 1mg of Diazepam every 1-2 weeks depending upon side effects. So far experienced no severe physical side effects except worsening of PGAD symptoms upon reduction which does seem to improve within a few days of doing so. Presently taking no antidepressants however still experiencing mild agitation, severe depression and PGAD which is currently being treated by a physiotherapist.

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Last two posts are on my thread. I know when I first experienced these symptoms I would have found great comfort having this information.

 

I hope that if anyone finds themselves dealing with this that the above posts will provide some useful insight into the condition and point them in the right direction when seeking help.

December 2008 Prescribed 20mg citalopram (celexa) for depression and OCD.July 2013 stopped taking citalopram (celexa). November 2013 reinstated citalopram (celexa) following replapse at 20mg for 4 weeks, 40mg for 4 weeks and tapered off over 4 weeks as my condition had deteriorated. February 2014 started 20mg of fluoxetine (prozac). Didn't tolerate it and stopped 4 weeks later, experienced no withdrawal. May 2014 started 25mg of sertraline (zoloft), increased to 50mg after 1 week. Remained at 50mg for 4 weeks before increasing to 100mg at the request of my psychiatrist despite advising of suicidal ideation for an additional week before stopping. Advised to drop to 50mg for 3 days before withdrawing altogether. I did as advised and horrendous withdrawal ensued. 11th August 2014 commenced escitalopram (lexapro), weaned off end of October 2014. Commenced Clonazepam December 2014 0.5mg twice daily, switched to Diazepam 10mg twice daily with a view to tapering of the benzodiazepine altogether. Tapering schedule presently at a reduction of 1mg of Diazepam every 1-2 weeks depending upon side effects. So far experienced no severe physical side effects except worsening of PGAD symptoms upon reduction which does seem to improve within a few days of doing so. Presently taking no antidepressants however still experiencing mild agitation, severe depression and PGAD which is currently being treated by a physiotherapist.

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Finally it makes some sense, but Im afraid its to late for me. Im 23 years old and Im left with dead meat down there that is just asking to cut it off. I really can't take this **** anymore, its been almost 2 years and Im just really tired. But good luck for you mate

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  • ChessieCat changed the title to Persistent genital arousal disorder (PGAD)
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