☼ cathyfrench: suffering from PGAD since sertraline withdrawal

[Shep]

26 minutes ago, cathyfrench said:

If I need to take antibiotics for the earache,  Do  one of the tinnitus sufferer know if it is safe to take them when you are in withdrawal? I took Augmentin and 3 course of antibiotics or cystitis when I was withdrawing from Sertraline in June and it made my tinnitus worse..

 

For those of us who have tinnitus, do you still take antibiotics ? and if yes do you know which ones are the least toxic ?.

 

Hi, Cathy. 

 

Here is the thread on SA about antibiotics that may be helpful:

 

Cipro, Levaquin, Azithromycin (Z-Pack), and other antibiotics

 

Please note: The antibiotics that people in benzo withdrawal should avoid if possible are the fluoroquinolone antibiotics because they affect the same receptors cites as benzos. Many people have severe setbacks. 

 

Here is more information:

 

http://www.saferpills.org/

 

And for people with current or even prior benzo use, they are particularly dangerous - 

 

Benzodiazepine tolerance, dependency, and withdrawal syndromes and interactions with fluoroquinolone antimicrobials

 

Here's a list of the fluoroquinolone antibiotics which should be avoided if possible during withdrawal and well after: 

 

Fluoroquinolone antibiotics

[cathyfrench]

thank you so much for this list Shep,

 

It turned out I didn't have an ear infection s o I din't need antibiotics. However my migraine is getting worse and my earache but it might ne like to the Xanax withdrawal or the Sertraline withdrawl unless it is linked with taking zopiclone. Tinnitus is bad and i am having a very bad PGAD flare up today. I am starting to suspect that the zopiclone might make things worse (I wake up at night with terrible migraines, screeming tinnitus, suicidal thoughts, nighmares, flast from the past). I am becoming dependant on Xanax and start having akhatisia,agitation, suicidal thoughts one hour before thaking my 0.25 dose. I have prepared my diary. Do I create a subject in the benzo section to post it ? I have to start tapering the Xanax  or the zopiclone eventhough I am not on an antidepressant anymore. I am very depressed because I can't look after my son anymore. It is awful.  Can you help people taper benzos on this site ? How can I manage it with the tinnitus ? I apologise to ask all these questions but I have been in a bad wave.

 

My psychiatrist suggested  Neurontin to help with PGAD ? What do you think ?

 

Thanks a lot for your help

 

Cathy

 

Edited September 1, 2017 by ChessieCat
bolded psych's suggestion

[Mort81]

I can speak from experience that the tinnitus will definitely fade away.  May not happen as soon as you would like though but it will happen.  Same with the  akathisia zit will also def improve not a doubt . I have only had mild sexual side effects.  And they have faded aswell 

[nz11]

21 hours ago, cathyfrench said:

My psychiatrist suggested  Neurontin to help with PGAD ? What do you think ?

Personally i think your p-doc is trying all he can to turn you into a medicated trainwreck.

 

I would avoid adding any more psycho active drugs to the mix.

It is well worth your effort to start distrusting the doctor and his chemicals.

Im so sorry your doctor has put you in this most difficult situation.

Gabapentin/ neurontin has been pushed heavily for off label uses, such negligent acts by the manufacturer resulted in a healthcare fraud criminal case settlement being attached to this drug of 1.3 billion in 2009.

 

reste fort

nz11

[Hopefull]

Hi Cathy,

How are you doing? 

I hope that you are doing better. 

Take care,  Hopefull. 

[cathyfrench]

* moved from the thread of another member

 

Dear all,

 

I am posting a little message here hoping you can all give me a bit of hope. 

 

My PGAD is still bad and I have also very bad bladder pain like a constant bad cystitis. My tinnitus isn't improving. It is now 6 months since I took this antidepressant Sertraline and that I stopped my xanax 0.25 cold turkey under the supervision of a psychiatrist in a mental hospital. I wasn't even depressed and anxious, I only had a domestic accident in December and I couldn't breath properly and I was put on xanax because my GP thought I was having panic attacks. I didn't agree with his diagnosis so he threatened me to call the social services because he considered that I was a danger to my little boy. I had no choice than go to a psychiatrist ward and they put me on this awful Sertraline and I developped PGAD and tinnitus. Since I have been suffering so much with terrible withdrawal symptoms. We used to have great fun for Halloween with my little boy and everything is gone !  I am losing hope.  I had CT guided nerve blocks in my pudendal nerve to try to stop the pain messages my brain is sending to my lower nerves  but  they didn't work. I thank all of you for your support (all the PGAD  and tinnitus boys and girls ) and  especially  Hopefull for her great support (and Shep also) but did some of us got rid of PGAD and tinnitus ? 

 

Sorry I am in a bad wave today and I still can't believe a little pill that I only took for a month and a half could have destroyed my health and my life.

 

Take good care, all of you,

 

Cathy

 

Edited October 29, 2017 by bubble

[Junglechicken]

Hi Cathyfrench,

 

I'm also suffering with what I think is IC (interstitial cystitis), tinnitus and possibly PGAD.

 

Having dropped my dose 2 weeks ago (after around 2 yrs of having stayed on that dose), I'm not sure if this is the cause.

 

Best,

JC

[cathyfrench]

Hi Junglechicken,

 

Are you experiencing tinnitus IC and PGAD just now that you have been bringing your  Cipralex dose down or did your have some of these symptoms before ?  The PGAD symptoms are very close to the IC symptoms and some people with IC  also have PGAD. In the same way many pudendal neuralgia sufferers have PGAD as one of their symptoms. At the beginning I thought I had IC,I had a cystoscopy done by my urologist but my bladder linning isn't inflamed which means I don't have IC. I also changed my diet but it didn't change my bladder pain.  My PGAD comes with an overactive and a painful bladder (I noticed that people who got PGAD from an antidepressant often have bladder pain and urinary frequency) but I also also have vaginal and genital symptoms that are typical of PGAD. 

 

I found a good article describing well what is PGAD  :  https://www.medicalnewstoday.com/articles/249594.php

 

I am off Sertraline for 6 months now but my PGAD is still there (and so is the tinnitus) I am still on xanax and zopiclone and I wonder if they don't make matter worse

 

What are you going to do ? continue to tapper or are you going to stay for a while on the same dose ?

 

Take good care 

 

Cathy

 

 

 

 

[Junglechicken]

22 minutes ago, cathyfrench said:

Hi Junglechicken,

 

Are you experiencing tinnitus IC and PGAD just now that you have been bringing your  Cipralex dose down or did your have some of these symptoms before ?  The PGAD symptoms are very close to the IC symptoms and some people with IC  also have PGAD. In the same way many pudendal neuralgia sufferers have PGAD as one of their symptoms. At the beginning I thought I had IC,I had a cystoscopy done by my urologist but my bladder linning isn't inflamed which means I don't have IC. I also changed my diet but it didn't change my bladder pain.  My PGAD comes with an overactive and a painful bladder (I noticed that people who got PGAD from an antidepressant often have bladder pain and urinary frequency) but I also also have vaginal and genital symptoms that are typical of PGAD. 

 

I found a good article describing well what is PGAD  :  https://www.medicalnewstoday.com/articles/249594.php

 

I am off Sertraline for 6 months now but my PGAD is still there (and so is the tinnitus) I am still on xanax and zopiclone and I wonder if they don't make matter worse

 

What are you going to do ? continue to tapper or are you going to stay for a while on the same dose ?

 

Take good care 

 

Cathy

 

 

 

 

 

Cathy,

 

I'm trying to work that one out, i.e. did these problems develop due to the dose drop?  The tinnitus I think is a combination of having a heavy cold and the dose drop.

 

I still have residual pain from the cystitis in my pubic area and will be discussing with my GP.  Like you I get bladder pain if I have to "hold it in" too long before being able to go to the loo; and I also get frequent urination.  I am sure I developed the urinary issues after going on ADs.

 

By the way, cystoscopy looks extremely painful - was this done under general?  

 

I suffer from genital itchiness (hormonal??), and get frequent infections "down there".......  I'm not 100% sure if I have PGAD or not.

 

In any case, all of this needs discussing with my GP.

 

Take care too,

 

JC

[cathyfrench]

Hi Jungle chicken,

 

I hope you are feeling better today. How is your tinnitus ? Just to reassure you: I had a cystoscopy done by my urologist and his lovely nurse (great doctor, great nurse) and it was not painful (but you are awake when it is done so I really advise you to find a good urologist).  I also had a urodynamic test done and this is more painfull (but I did it with the same nurse and she is very good) My PGAD flared after it but it is important to do a  cystoscopy and a urodynamic test to assess if your bladder works properly. I was told by my urologist that antidepressants can prevents the bladder to contract properly and that gives rises to urgency. I was on Sertraline for only a month and a half but I remember having to urinate more frenquently before the PGAD starts. 

 

Regarding PGAD, it usually starts very violently. I am in contact with several women who  also have it and theirs first symptoms started out of the blue with violent arousal. PGAD usually appears when  just starting a SSRI or abruptly stopping a SSRI (you are not in this situation, you are tappering slowly). It my case it started one day with very heavy vaginal lubrification, very violent arousal, genital engorgement followed a day later with bladder pain and need to urinate every 10 minutes. It is usually worse sitting done and you can have spontaneous O in a car, bus etc.  

 

I found a great help with a pelvic floor physitherapist, She taught me to do reverse kegel exercices,  I go to a chiropractor for tinnitus, I found it helpful also. 

 

I made a terible error when I got PGAD, I  panicked and went to a psychiatrist, he put me on a psychiatric clinic where they made me tapper Sertraline very fast (one day on, one day out) for only 2 weeks while putting me on risperidone then on anfranil. I reacted very baddly to the the 2 meds and the PGAD stayed and it is still here 6 months later with bad tinnitus. Do not hesitate to ask if you are worried about PGAD.

 

Take good care 

 

Cathy

[bubble]

Hello Cathy,

 

I managed to move all your posts and replies from WhySSRI's thread to your thread here.

 

I think that Shep summed up your situation very well on your thread on the benzo subsection:

 

Psych drugs effect so many things - hormones, thyroid, blood sugar, the entire nervous system.  GABA, serotonin, dopamine, etc. are located all over your body. And the sexual stimulation may not be specific to zopiclone just because it's happening at night and the last drug you took was zopiclone. You've been on a range of many drugs this year, all of these drugs causing waves at unpredictable times. 

 

I think many of us have what you might call a "signature symptom". Mine is depersonalization / derealization (dp/dr). Others may have physical pain, dizziness, or severe anxiety including health anxiety. Whatever your signature symptom is, it's likely your weakest link and the one you'll have to work the hardest on to handle as you come off these drugs. It sounds like PGAD and tinnitus are your signature symptoms. 

Psych drugs effect so many things - hormones, thyroid, blood sugar, the entire nervous system.  GABA, serotonin, dopamine, etc. are located all over your body. And the sexual stimulation may not be specific to zopiclone just because it's happening at night and the last drug you took was zopiclone. You've been on a range of many drugs this year, all of these drugs causing waves at unpredictable times. 

 

As you said yourself, complaining to your doctor about Sertaline led to being started and taken off of some heavy duty drugs. It will take a while for symptoms to abate but they will. Your life hasn't been destroyed just temporarily halted while you are recovering.

 

I wouldn't come off any of the drugs until your symptoms settle down. It is very common that people assume the drugs they are taking are causing them problems and want to get rid of them does ending up in an even worse situation. Unfortunately things can always get worse. 

 

The best strategy is to wait with all the patience one can get and then some. And practice self-soothing techniques.

 

This post helped me a lot to understand what is going on with my brain and it gave me hope and patience:

 

On 8/30/2011 at 9:28 PM, Rhiannon said:

A lot of people, including healthcare practitioners; in fact, I guess, most people-- are operating from entirely the wrong paradigm, or way of thinking, about these meds. They're thinking of them like aspirin--as something that has an effect when it's in your system, and then when it gets out of your system the effect goes away.

 

That's not what happens with medications that alter neurotransmitter function, we are learning. What happens when you change the chemistry of the brain is, the brain adjusts its chemistry and structure to try to return to homeostasis, or biochemical and functional balance. It tries to restabilize the chemistry. For example: SSRI antidepressants work as "serotonin reuptake inhibitors." That is, they cause serotonin to remain in the space between neurons, rather than being taken back up into the cells to be re-used, like it would be in a normal healthy nondrugged brain. So the brain, which wants to re-establish normal signaling and function, adapts to the higher level of serotonin between neurons (in the "synapse", the space between neurons where signals get passed along).

 

It does this by removing serotonin receptors, so that the signal is reduced and changed to something closer to normal. It also decreases the amount of serotonin it produces overall. To do that, genes have to be turned on and off; new proteins have to be made; whole cascades of chemical reactions have to be changed, which means turning on and off OTHER genes; cells are destroyed, new cells are made; in other words, a complex physiologic remodeling takes place. This takes place over time. The brain does not grow and change rapidly. This is a vast oversimplification of the amount of adaptation that takes place in the brain when we change its normal chemistry, but that's the principle.

 

When we stop taking the drug, we have a brain that has designed itself so that it works in the presence of the drug; now it can't work properly without the drug because it's designed itself so that the drug is part of its chemistry and structure. It's like a plant that has grown on a trellis; you can't just yank out the trellis and expect the plant to be okay. When the drug is removed, the remodeling process has to take place in reverse. SO--it's not a matter of just getting the drug out of your system and moving on. If it were that simple, none of us would be here. It's a matter of, as I describe it, having to grow a new brain. I believe this growing-a-new-brain happens throughout the taper process if the taper is slow enough. (If it's too fast, then there's not a lot of time for actually rebalancing things, and basically the brain is just pedaling fast trying to keep us alive.) It also continues to happen, probably for longer than the symptoms actually last, throughout the time of recovery after we are completely off the drug, which is why recovery takes so long.

 

With multiple drugs and a history of drug changes and cold turkeys, all of this becomes even more complicated. And if a person is started on these kinds of drugs at an early age before the brain has ever completely established normal mature functioning--well, it can't be good. (All of which is why I recommend an extremely slow taper particularly to anyone with a multiple drug history, a history of many years on meds, a history of past cold turkeys or frequent med changes, and a history of being put on drugs at a young age.)

 

This isn't intended to scare people, but hopefully to give you some idea of what's happening, and to help you respect and understand the process so you can work with it; ALSO, because you are likely to encounter many, many people who still believe these drugs work kind of like aspirin, or a glass of wine, and all you need to do is stop and get it out of your system. Now you can explain to them that no, getting it out of your system is not the issue; the issue is, you need to regrow or at least remodel your brain. This is a long, slow, very poorly understood process, and it needs to be respected.

 

[cathyfrench]

Dear Bubble and all of you on the forum, 

 

Thank you for your kind words. Iam trying to stay strong like all of you on this forum but I am losing my strenght.

 

I cry all the time, I am grieving for the life I used to have. Last year i was happily bringing my son to celebrate Halloween. Last year I didn't know what was PGAD and tinnitus or xanax or zopiclone. I didn't know Sertraline and antidepressants (nerver took one, wasn't depressed or anxious and had a good sleep at night). I was happy and I had a stupid accident while cleaning my house, I hurt myself with 2 cleaning products, I couldn' t breath properly  anymore and then that what the beginnning of my journey in hell. My GP decided I was having a post traumatic disorder and that I was a danger to my son (because I kept saying that my difficulty to breath was not anxiety that we had been truly hurt by these cleaning products) I was sent to mental hospitals, psychiatrist kept changing these benzos,  then took me from xanax cold turkey  and I developped tinitus then they put me on antidepressant and I had bad side effects (maybe due also to the xanax withdrawal) and when I start tappering the Sertraline down  (after 3 weeks on it) I got PGAD and it was not over the psychiatrists told me I had a psychotic break and they made me stop the Sertraline very fast instead of tappering it slowly  (which could have controlled the PGAD) I was put on the  neuroleptic, Risperidone, then the Ad anafranil that made my tinnitus worse) Then they put me back on xanax and I resisted because thanks to this site I understood everything that was happening to me had been caused by all the benzos the doctors kept giving me and kept taking away  and by the Sertraline. I understood PGAD was real, not a psychotic break.

 

But I haven't recovered, 6 months since I took Sertraline for only a month and a half, I still have pgad and tinnitus, I am back on xanax and it makes me drowsy and depressed. I sleep with zopiclone that makes me so drowsy and sad but my tinnitus is so high pitched that I can't sleep without it. I am becoming totally dependent on xanax like a drug addict and I fear that my PGAD and tinnitus are getting worse when I don't take my dose.

 

Iam losing hope. The doctor and psychiatrists i see in my town (very traditionnal) don't want to help and they all think I am having a psychotic break and that PGAD is in my head and my family is on their side. I saw a pain specialist who believe PGAD exists but he doesn't think antidepressant can cause it. He thinks PGADS is a symptom of pudendal neuralgia. He gave me nerve blocks in the pudendal nerve but i didn't stop the PGAD.  He told me that only lyrica and amythriptiline can stop PGAD and that it won't go naturally.  My psychiatrist of course wants to put me back in a mental institution and put me on zyprexa (this guy seems to have a passion for neuroleptics)

 

SO here I am lot, not knowing what to do. Sorry I am very low today ! I just wish my old life could come back !

 

Thanks for your support 

 

Cathy 

 

 

Take good care and thank you for your du

[bubble]

Cathy, you are in early stages of recovery so there is plenty of reasons to have hope.

 

I spent many of my 20 years (half life) of drug experience grieving for the life I used to have. I guess it's normal but it is such a terrible wate of time and energy. But I guess we all have to go through this. You were exposed to many drugs but luckily the exposure was short so you will recover.

 

I wouldn't go complaining to doctors and psychiatrists. Unfortunately people who have been labelled with psychotic symptoms are in real danger from the system. There is no way you will convince them of anything but you risk being harmed more. Instead I would advise you build your support network here. You started a nice exchange with Junglechicken. Why don't you visit her thread, offer her support. Visit other people. You will find that we are all going through very similar things and we rely on supporting each other and learning about all the useful survival tips. There is Frogie, Joy, Flowers, Scorpio... - all very sympathetic and supportive ladies. I would connect with them, get to know their stories, learn from them and learn from the advice their received from moderators and others.

 

This will pass.

[bubble]

I just came across what MollyN wrote to Jennifer78 and word for word this is a message I wanted for you: (Jennifer has a gratitude list (a great thing to try out!)

 

Oh honey - don't give up hope, there is no need at all! Yes you'll heal and yes it's within many people's experience to be struggling along at your stage. You're doing so well!!! You'll never have to relive these past 11 months again - ever!

 

I know my anxiety is caused by my drug taking and subsequent stop - I'd never experienced it previously at all. So if it started with withdrawal, I figure it will ease off and end when the withdrawal and brain remodelling has taken place. I can't rush it and I just kind of have to accept it, and in some ways I try and embrace it, or at least not fight it - I call it 'my new friend anxiety' (not very catchy sorry!). Don't get me wrong it annoys the heck out of me!!

 

The depressed feeling are so insidious aren't they - sneaking in and stealing the colour out of the world. Well, that's withdrawal too, and it will pass. I love that you've got a gratitude list - I'm hopeless at even finding any list I start 

 

Do you wonder if we could accept that life doesn't look the way we hoped and expected it to right now (ie that we'd be feeling happy or at the very least not grey and anxious) do you think that would help?

 

If we perhaps considered that there wasn't a right or wrong way to be right now, but just accepting that this is kind of the way it is,  and try not wish it were tons different.  I'm just thinking out loud, so just ignore if that makes zero sense - I just feel like such a failure at life right now, that I wonder if pushing the stop button on what I imagine I would have been doing/achieving/feeling would help, and maybe it might help you as well? 

Quote this

 

 

[cathyfrench]

Dear Bubble and all of you on Surviving antidepressants,

 

Thank you so much for the kind words and for all the beautiful messages. I think I am in the worse wave I ever been so far. PGAD is very bad and so is my tinnitus, I experienced violent depression and crying spells when I wake up in the morning and I can't get up of my bed anymore. I am the shadow of my former self. I think xanax and zopiclone that I still take are making my depression worse but at the same time I couldn't function without these 2 drugs (xanax makes the tinnitus quieter) and zopiclone (makes me sleep otherwise with the tinnitus I can't sleep). I suspect that zopiclone makes the PGAD worse and maybe xanax makes it worse also but I am dependent on them now. It is a catch 22. 

 

Is it normal to be hit by this atrocious wave (maybe the worse one I have ever experienced) 6 months after taking Sertraline for only 1 months and a half? PGAD is getting worse. I get up in the morning shivering and with a very violent tinnitus and have terrible nightmares at night (Is it the zopiclone ?)

 

Thanks a lot for your lovely messages and for the support. 

 

Take good care 

 

Cathy

 

PS: Thank you so much for your nice message,Hopefull, I am trying to be strong but as you know PGAD is devastating.

[bubble]

Being hit by waves is very typical for withdrawal since healing is not linear. It's more like fixing a rubic cube where the brain keeps going back to fix things.

 

What is important to keep telling yourself is that all this is temporary and it passes. It is not what things will be like from now on. 

 

I found connecting with people on this site and following their stories very helpful. The more support you give to others the more you will get back in return.

[Altostrata]

Hello, cathyfrench, how are you doing?

 

Unfortunately, depression is a side effect of benzos. Your intuition is probably correct.

 

Are you still taking zopiclone?

[cathyfrench]

Dear Altostrata, 

 

Thanks for your post. I have been struggling in a very heavy wave for the past 3 weeks. 

 

I am on the benzo forum where I get a great help from Shep. I started tappering zopiclone  at the beginning of January because I suspected that it was this hypnotic that made me very depressed and lethargic in the morning. I also always suspected it might make my PGAD worse ( I read that hypersexuality is a side effect of zopiclone).  My pharmacist advised me to replace zopiclone 3,75 mg by imovane 3,75mg ( She told me that Imovane is easier to disolve in water eventhough it is the same molecule) I tried to water titrate my 3,25 mg imovane tablet  by 2 % (8 percent tapper a month.) but the imovane really irritated my throat so I had to stop the titration and go back to 3,75 and I have been cutting a little piece off with a pill cutter. I have ordered a scale to tapper imovane. 

 

Now I am geting interdose withdrawal from Xanax and  I can feel I am becoming dependent on Xanax and that my current doses aren't enough. Everyday I get a bad crash at around 4 pm with,violent depression, anger and crying spells, worse PGAD and more tinnitus). I tried to spread my dose during the day but it made my PGAD worse.  I fear that Xanax always quieted down the PGAD and the tinnitus but I also know this benzo makes me very depressed and agitated due t its short acting life.

 

I know I have to start tappering these 2 drugs but I know also that my withdrawal side effects will be  an increased tinnitus and  more PGAD flare up. 

 

It is going to be a bad fight.  Anyway I think we are Warriors on this forum!

 

 

Thanks a lot for your advise on this,

 

Courage ! to all of us on the forum ! and thanks a lot to all of you for your support.

 

Cathy

 

 

 

 

 

[Mask]

hii cathyfrench how r u doing now 

howz your pgad now 

your fellow pgad sufferer

[Mask]

catheyfrench

how are u doing now,howz your pgad,are u ok 

[cathyfrench]

Dear all,

 

I wrote my PGAD and tinnitus story on the  Rxisk website if you want to read it. Rxisk is running a campaign on PSSD and PGAD at the moment. 2 articles have been written on PGAD, mine is the third one. I filled up a Rxisk report and the editor asked me if I wanted to write my story on their site. Here's the link if you want to read my Sertraline Journey. I am happy it is written because I feel that people need to know that SSRIs can trigger PGAD (and tinnitus of course) and plenty of other symptoms. I got PGAD a year ago and I still suffer from it (and tinnitus) and It was important for me that my sad story was written somewhere. Feel free to comment and to tell your stories. People need to know. At least we can prevent others to become victims of SSRIs the way we were victims.

 

https://rxisk.org/my-pgad-nightmare/

 

 

Take good care

 

Cathy

[India]

Hello Cathy, I've read your story. Sorry to hear of your suffering! I suffer from suspected IC and urologist has organised a cytoscopy . I had thought my bladder problems were trauma and stress/OCD related but this last stretch of AD use has lasted 10 years same as the bladder issues. There may well be a correlation . Even the urologist said there may be a connection with SSRI use.

 

It would be great to hear how you

are doing? Have you

heard of Mad in America and also beyond meds? 

 

[India]

I am so saddened by the way you were treated by psychiatry. You have been traumatised, first by the drugs and secondly, by those you went to for help. I firmly believe, as evidenced by your story, that psychiatrists are dangerous, as peter breggin states. It's their ignorance that is dangerous, coupled with their power to deem

who is "sane" and make decisions about your body. It's abuse. 

[cathyfrench]

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

[Hopefull]

Hi Cathy,

How are you doing these days?

[India]

@cathyfrench so sorry that I never saw your response. 

Please update us.

[cathyfrench]

Dear India and Hopefull,

 

It is now 2 years and a half,that I got PGAD and constant tinnitus from the SSRI Sertraline. in April I was put on Sertraline 50 mg and after 2 weeks on it, I brought my dose down to 25mg to stop it because I felt suicidal on it (I didn't know anything about tappering at that time) and a week later when I wasstill on sertraline 25 mg,  I got tinnitus and PGAD (and violent agitation) alongside other symptoms. Istopped Sertraline in June 2017 and I was put back on Xanax and I stayed on  zopiclone (I had been put On zopiclone as the same time as Xanax).

 

Nowit has been 2 years and a half that I stopped Sertraline and I finished my Xanax and zopiclone tappers at the beginning of 2019. I stopped first Xanax then zopiclone( 10 percent every month). The more I completed my tappers,the better my PGAD got as if Xanax and zopiclone were causing on top pf PGAD, sexual OCD (maybe for Xanax) and hypersexuality (for zopiclone). I also had very bad anger bursts on Xanax and zopiclone and the more I was tappering,the better I got psychologically.

 

My PGAD is now very mild but my tinnitus stayed the same,constant and high pitched. However tinnitus appears also very often  in menopause and I had just started the menopause when I got PGAD and tinnitus and this could explain why I still have tinnitus. I follow a tinnitus Retraining Therapy to help me and I wear while noise hearing aids to help me stay in a silent room etc. I am trying to habituate but it isn' easy.

 

My PGAD is really mild and I can now lead a normal life, however, I can still experience mild pin and needles on the pelvic area when I am stressed and angry.

 

I saw 2 specialistsfor PGAD who tried to help,

 

-A famous  sexologist,who told me he had a lot of patients with PGAD caused by an antidepressant SSRI. He didn't know how to cure it but he suspected that PGAD was similar to priapism in men (antidepressants can  cause priapism in men) and he suggested to take an hormonal medication to reduce my testosterone and my estrogens. I agreed with him that PGAD was very similar to priapism but I dcided not to take the hormonal medication because they are dangerous. Also I read online that some people got PGAD after stopping an hormonal medication so I decided not to take the risk.

 

-PGAD can be a symptom of pudendal neuralgia so I am a patient of a pudendal nerve specialist. My pudendal nerve specialist has too theories about my PGAD :

 

-The first one, PGAD is asimilar illness as restless leg syndrome and it is neurological and it is caused by a sick autonous nervous system, the sympathetic nervous system is too active while the parasympathetic nervous system is dead. Basically, I have a neuropathy. She gave me iron and vitamine C (they give it too people with Resless leg syndrome) and it really helped. I also got the ganglion impar block (is used to treat chronic perineal pain when it is considered that there is a sympathetic or neuropathic component to the pain).  and it helped I think to stop the arousal message to travel from the pelvic area to the brain.

 

-Her second theory is that the antidepressant increased violently the serotonin in my body (and not only in my brain) and woke up a pain that was already there on the pudendal nerve and on the auditory nerve. In this situation, my PGAD would be a symptom of pudendal neuralgia. However I got pudendal nerve blocks to see if I had pudendal neuralgia and I didn't get any relief from them so I tend to Believe that my PGAD is more neurological and is coming from the brain.

 

There is also the theory from Pr David Healy that I found very interesting , If I understand him correctly,  He seems to put PGAD in the Post SSRI Sexual dysfunction category and it would be closer to a small fiber neuropathy. I also noticed that on the web a lot of people with akatisia seems to be describing  symptoms very similar to PGAD. I sometimes Wonder if PGAD isn't a form of akhatisia.

 

 

Now my PGAD is mild but I noticed that it got milder with time. I have been now menopausal for 3 years and I am suffering from very bad hotflashes etc but the more I go into the menopause,the better my PGAD is getting (unfortunatly tinnitus stays the same) so I Wonder if hormones Don't play a role in PGAD. I Wonder if too much estrogen or too much testosterone could be a cause of PGAD. Could it be possible that SSRIs disturb hormones to the point of causing this disorder ? At the moment I suffer a lot from irritability and depression but I suspect that the menopause makes the withdrawal symptoms worse.

 

This year I have found a lot of things that helps. Physiotherapy (for the overactive bladder) and  for quieting the pelvic nerves and muscles. Working on the PSOAS muscles and on the diphragm help relaxing the sympathetic nervous system. Breathing exercices to trigger the vagus nerve and quieting down  the sympathetic nervous system helps. I found magnesium very usefull to quiet down the nerves and the irritability.  Swimming helps me and I started Tai Chi and Qi Cong and it helps to control the sympathetic nervous system.

Iron and vitamine C really helped me.

 

Psychotherapy really helps me to deal with the trauma. I also noticed that I have now a kind of sexual OCD (I never suffered from OCD before taking sertraline). A lot od people on the internet speak about the groinial response and I Wonder if Sertraline didn't cause me to have a kind of chemical OCD but my PGAD is senstive to stress.

 

 

I am getting better but I am still badly hurt . I hope that all of you on this site will get better.

 

Take good care.

 

 

 

 

[cathnz]

On 10/19/2019 at 5:12 AM, cathyfrench said:

Dear India and Hopefull,

 

It is now 2 years and a half,that I got PGAD and constant tinnitus from the SSRI Sertraline. in April I was put on Sertraline 50 mg and after 2 weeks on it, I brought my dose down to 25mg to stop it because I felt suicidal on it (I didn't know anything about tappering at that time) and a week later when I wasstill on sertraline 25 mg,  I got tinnitus and PGAD (and violent agitation) alongside other symptoms. Istopped Sertraline in June 2017 and I was put back on Xanax and I stayed on  zopiclone (I had been put On zopiclone as the same time as Xanax).

 

Nowit has been 2 years and a half that I stopped Sertraline and I finished my Xanax and zopiclone tappers at the beginning of 2019. I stopped first Xanax then zopiclone( 10 percent every month). The more I completed my tappers,the better my PGAD got as if Xanax and zopiclone were causing on top pf PGAD, sexual OCD (maybe for Xanax) and hypersexuality (for zopiclone). I also had very bad anger bursts on Xanax and zopiclone and the more I was tappering,the better I got psychologically.

 

My PGAD is now very mild but my tinnitus stayed the same,constant and high pitched. However tinnitus appears also very often  in menopause and I had just started the menopause when I got PGAD and tinnitus and this could explain why I still have tinnitus. I follow a tinnitus Retraining Therapy to help me and I wear while noise hearing aids to help me stay in a silent room etc. I am trying to habituate but it isn' easy.

 

My PGAD is really mild and I can now lead a normal life, however, I can still experience mild pin and needles on the pelvic area when I am stressed and angry.

 

I saw 2 specialistsfor PGAD who tried to help,

 

-A famous  sexologist,who told me he had a lot of patients with PGAD caused by an antidepressant SSRI. He didn't know how to cure it but he suspected that PGAD was similar to priapism in men (antidepressants can  cause priapism in men) and he suggested to take an hormonal medication to reduce my testosterone and my estrogens. I agreed with him that PGAD was very similar to priapism but I dcided not to take the hormonal medication because they are dangerous. Also I read online that some people got PGAD after stopping an hormonal medication so I decided not to take the risk.

 

-PGAD can be a symptom of pudendal neuralgia so I am a patient of a pudendal nerve specialist. My pudendal nerve specialist has too theories about my PGAD :

 

-The first one, PGAD is asimilar illness as restless leg syndrome and it is neurological and it is caused by a sick autonous nervous system, the sympathetic nervous system is too active while the parasympathetic nervous system is dead. Basically, I have a neuropathy. She gave me iron and vitamine C (they give it too people with Resless leg syndrome) and it really helped. I also got the ganglion impar block (is used to treat chronic perineal pain when it is considered that there is a sympathetic or neuropathic component to the pain).  and it helped I think to stop the arousal message to travel from the pelvic area to the brain.

 

-Her second theory is that the antidepressant increased violently the serotonin in my body (and not only in my brain) and woke up a pain that was already there on the pudendal nerve and on the auditory nerve. In this situation, my PGAD would be a symptom of pudendal neuralgia. However I got pudendal nerve blocks to see if I had pudendal neuralgia and I didn't get any relief from them so I tend to Believe that my PGAD is more neurological and is coming from the brain.

 

There is also the theory from Pr David Healy that I found very interesting , If I understand him correctly,  He seems to put PGAD in the Post SSRI Sexual dysfunction category and it would be closer to a small fiber neuropathy. I also noticed that on the web a lot of people with akatisia seems to be describing  symptoms very similar to PGAD. I sometimes Wonder if PGAD isn't a form of akhatisia.

 

 

Now my PGAD is mild but I noticed that it got milder with time. I have been now menopausal for 3 years and I am suffering from very bad hotflashes etc but the more I go into the menopause,the better my PGAD is getting (unfortunatly tinnitus stays the same) so I Wonder if hormones Don't play a role in PGAD. I Wonder if too much estrogen or too much testosterone could be a cause of PGAD. Could it be possible that SSRIs disturb hormones to the point of causing this disorder ? At the moment I suffer a lot from irritability and depression but I suspect that the menopause makes the withdrawal symptoms worse.

 

This year I have found a lot of things that helps. Physiotherapy (for the overactive bladder) and  for quieting the pelvic nerves and muscles. Working on the PSOAS muscles and on the diphragm help relaxing the sympathetic nervous system. Breathing exercices to trigger the vagus nerve and quieting down  the sympathetic nervous system helps. I found magnesium very usefull to quiet down the nerves and the irritability.  Swimming helps me and I started Tai Chi and Qi Cong and it helps to control the sympathetic nervous system.

Iron and vitamine C really helped me.

 

Psychotherapy really helps me to deal with the trauma. I also noticed that I have now a kind of sexual OCD (I never suffered from OCD before taking sertraline). A lot od people on the internet speak about the groinial response and I Wonder if Sertraline didn't cause me to have a kind of chemical OCD but my PGAD is senstive to stress.

 

 

I am getting better but I am still badly hurt . I hope that all of you on this site will get better.

 

Take good care.

 

 

 

 

 

 @cathyfrench(and @India and @Hopeful @Hopefull) just found this thread and wanted to cry when I read it... it is what I have been experiencing (although very thankfully, so far, to a lesser degree) . A few months ago my paroxetine (which I had been on for 7 years) stopped working and I was switched straight over to Mirtazapine (without a taper). 4 days later I began experiencing highly sensitised 'lady parts'. I tried to explain it to my husband that it was as if I was walking around with an erection (but without the desire for sex). Luckily I haven't had any of the pain or bladder issues (so far!). Three months in aI'm still experiencing this (and the tinnitus and noises being loud), and have been so lost and confused as to what was going on. Then last night, I somehow stumbled across your post and had a "holy crap that's me... and this is a thing" moment. I wanted to cry reading what you've been through. I had hoped that this would ease sooner rather than later, but my heart sank reading how long this has gone on for you. I don't know if I have the strength to get through.

 

Did ANYTHING at all help???? 

 

[Altostrata]

On 10/18/2019 at 9:12 AM, cathyfrench said:

This year I have found a lot of things that helps. Physiotherapy (for the overactive bladder) and  for quieting the pelvic nerves and muscles. Working on the PSOAS muscles and on the diphragm help relaxing the sympathetic nervous system. Breathing exercices to trigger the vagus nerve and quieting down  the sympathetic nervous system helps. I found magnesium very usefull to quiet down the nerves and the irritability.  Swimming helps me and I started Tai Chi and Qi Cong and it helps to control the sympathetic nervous system.

Iron and vitamine C really helped me.

 

Psychotherapy really helps me to deal with the trauma. I also noticed that I have now a kind of sexual OCD (I never suffered from OCD before taking sertraline). A lot od people on the internet speak about the groinial response and I Wonder if Sertraline didn't cause me to have a kind of chemical OCD but my PGAD is senstive to stress.

 

Good to hear you're feeling a bit better, cathy.

 

I would not take anything to disturb your sex hormones! Nobody knows the source of this symptom. Since it's very gradually going away, it's following the resolution of post-acute withdrawal syndrome in general.

 

You're only recently off all drugs, you have a ways to go to full healing -- please be patient. You've done a brilliant job of researching your symptoms.

[cathyfrench]

Dear Cat,

I am so sorry you are experiencing these atrocious symptoms, keep hope.

How are you ? Do you still suffer from constant tinnitus ? I think mitarzapine can give tinnitus,as a side effect. maybe you could check on the tinnitus thread. When did you start experiencing it ? I had also hyperacusis (sensitivity to sounds) when I brought my sertraline dose down and it quieted down but it was replaced by tinnitus. I would suspect that the abrupt stop of paroxetine gave you PGAD (if youchecked on the net there are a lot of articles about stopping paroxetine and PGAD)

Are you still experiencing PGAD ? Do you think it is a withdrawal side effect from paroxetine or a side effects from mitazarpine ?  Hopefull got PGAD from Sertraline like me then she was switched to mitazarpine and she started a very very slow mitarzapine tapper that lasted years and she had to stabilise for months and she doesn't have PGAD anymore. May be you can post on her thread and she will help you. We are several with PGAD on this site and I wonder if some of us got it from paroxetine and they could advise you, you can use the PGAD thread to be in contact with them.

 

DO you think you have a kind of akhatisia. I had this for a year, constant agitation, raging tinnitus, violent PGAD, anger burts, violent suicidal thoughts for a year after coming off Sertraline and very slowly I got better. It is now 2 years and a half, the akhatisia (violent agitation as if I wanted to jump from my body) and the violent suicidal thoughts and anger burts quieted down (it was worse when I was on benzos) .  Now I am really better, the PGAD is nearly gone but I kept a very sensitive pelvic area. The tinnitus stayed the same but tnnitus can also be triggered by the menopause and I took this antidepressant just when I was starting the menopause, so I suspect that my tinnitus might have got better if I hadn't been in menopause.

 

For PGAD, a lot of things can help.

 

I take iron and vitamine C every 6 months for 1 month and it helps (Under doctors supervision because my blood test don't show that I miss iron). It was given to me by y pudendal nerve specialist because she thinks that my PGAD is a neuropathy similar to restless leg syndrome and doctors give iron and vitamine C to women who suffer from neuropathies. Basically the sympathetic nervous system is too active and it has to be quieted down.

 

Ialso use high dose of magnesium to quiet down my sympathetic nervous system, I see a physiotherapist specialised in pelvic pain and she helped me relax the muscles and the nerves from the pelvic area. She also taught me how to regulate my autonomous nervous system with breathing exercices to trigger the vagus nerve and in turn it quiets down the sympathetic nervous system (there are plenty of exercices on yutube inyou want to have a look). I take valerian roots to relax and to sleep.

 

I saw a pudendal nerve specialist and she was a great help and she gave me pudendal nerve blocks (that didn't help) and a ganglion impar block that seem to quieted down the arousal message to travel to the brain from the genitals. If you want you can join the PGAD facebook support group and they have a list of doctors (sexologists and pudendal nerve specialist) and Pelvic pain physiotherapists you can help. The PGAD facebook support group is totally private and safe, they interview the sufferers to make sure that they are genuine. It is a good group totally private. 40 percent of the ladies in that group got PGAD from SSRIS and SNRIS, the rest got it from pudnedal neuralgia, hormonal medication, the menopause and some ladies seem to have a kind of genital OCD (groinial response)

 

https://www.facebook.com/groups/980353255348348/

 

Don't sit too long, go for very long walks, swim and then try to relax as much you can (to quiet down the sympathetic nervous system), the first year, I spend my time watching Netflix with a hot bottle on my spine and a pack of ice on the genitals. Take hot bath with elpson salts then lie down with an ice pack on the pelvis and Watch TV.  When you are in a wave, I still have wavesevery day and I eat a little something  ora piece of bread (it works, I have learnt to do this on thisforum, it seems to quiet down the nervous system)

 

Now I am better but it took time, 2 years and I have days when I am back in a wave and days where I can have a normal life.  My PGAD isreally mild, I still have tinnitus but I see a ear  specialist that make me do tinnitus retraining therapy and Iwear white noise ear aids when I am at home. The thing is to habituate to allow the brain to filter the noise.

 

Isee a behavioral psychologist and it really helped me to manage the symptoms. A chiropractor helped me to relax my sympathetic nerves.

 

Professor Healy from Rxisk  has run a series of articles on PGAD if you want to have a look :

 

https://rxisk.org/the-princess-and-the-frozen-pea/

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

 

Keep hope, you will get better but it will take a lot of time.

 

Take very very good care

 

Cathy

 

 

 

 

 

[Mask]

Hi cathy

its like you and me are same i got pgad 2 years ago at the begning my pgad was worse same as you but as the time passes my pgad got milder to the point it was nearly gone...when i withdrew from ads 1st year of withdrawal was very hard very bad pgad....after 1 year i began to have relief and then there was almost no pgad for 8 to 9 months but now the reason of comming on this forum is its like my pgad is getting worse again what should i do sugges me something or it will pass away....because its seems like pgad is again comming back 

[Mask]

Hi cathy 

how are you doing these days..how is your pgad.. please can you inform me something about your condition now...it will be very helpful for me 

[Boris]

This has been an upsetting and really interesting read. I'm so glad you have improved Cathy.

 

I also got tinnitus and what I now think is something similar to PGAD for the last 2 years but with the frequent urination being the strongest symtom (started 8months after getting off a long ordeal with Paroxetine)

 

It's strange how you've linked the akathesia and Pgad because I was talking to my mum who saw me go through akathesia and said it's almost like akathesia in my bladder and genitals.

 

Although I don't get aroused I was getting strange sensations in the penis, pain, pressure, bladder nervousness, all sorts. Every test under the sun and nothing can be found. 2 years later I'm now much better but still needed to pee every 15mins at times. I do believe this will eventually resolve or improve to a point where it doesn't stop me functioning.

 

Unfortunately my tinnitus hasn't changed in the 3.5years I randomly woke up with it.

 

I hope you continue to improve and move on from your ordeal!

[Mask]

Hi Boris,

it is very nice to hear you have started feeling better..i have noticed many people on this forum started to feel better when they are almost 2 year free from drugs....for me i also noticed big improvements regarding my pgad it was for me like healed...but right now its troubling me again....

[cathyfrench]

On ‎12‎/‎20‎/‎2019 at 11:00 PM, Boris said:

This has been an upsetting and really interesting read. I'm so glad you have improved Cathy.

 

I also got tinnitus and what I now think is something similar to PGAD for the last 2 years but with the frequent urination being the strongest symtom (started 8months after getting off a long ordeal with Paroxetine)

 

It's strange how you've linked the akathesia and Pgad because I was talking to my mum who saw me go through akathesia and said it's almost like akathesia in my bladder and genitals.

 

Although I don't get aroused I was getting strange sensations in the penis, pain, pressure, bladder nervousness, all sorts. Every test under the sun and nothing can be found. 2 years later I'm now much better but still needed to pee every 15mins at times. I do believe this will eventually resolve or improve to a point where it doesn't stop me functioning.

 

Unfortunately my tinnitus hasn't changed in the 3.5years I randomly woke up with it.

 

I hope you continue to improve and move on from your ordeal!

Hi Boris,

 

Thak you so much for your message. Your PGAD symptoms are very similar to mine (eventhough I am female so of course they are different) but yes PGAD usually comes with an overactive and painful bladder (a kind of pressure) . the genital area is basically too sensitive as if the skin in ths area was damaged like a bruise or pin and needles or a burnt. Ican't sit for long and I get mild arousal when I am stressed. Physiotherapy helped me to control my bladder (she worked on the psoas and it helped also). What did you do to hep ? Did you see a pudendal nerve specialist or a urologist ?

 

For me PGAD is close to akhatisia and is a neuropathy. I am on a facebook support group for akhatisia and a lot of people with akhatisia suffer also from PGAD and strangely they often have tinnitus. SOme have restless leg syndrome and some pudendal nerve specialists consider that PGAD is similar to Restless leg syndrome (this is why my pudnedal nerve specialist gave me iron and vitamine C and ganglion impar block (injection in the gangion impar that is located at the basis of thr spine).

 

Tinnitus is my worse symptom now and like you it hasn't improved. I have learned to accept that it won't go away but it is still difficult to accept to live with it all the time. I have a hearing loss in the high pitch sounds so my ear specialist told me that tinnitus won't go away in my case (it often appears at the menopause for women). Ialso suffer from anger bursts and I only get angry in the late afternoon and Iwonder if it is not linked with akhatisia.

 

I hope you will get better soon.

 

Take care

 

Cathy

[Mask]

Hi cathyfrench

How are you doing these days

how is your pgad now

i hope for you its improving as the time passes

please keep us update ....