Hopefull: suffering from PGAD

[Hopefull]

Hi India,

For the most part I am okay. I am still not 100%.

I still experience symptoms here and there.

Just recently I was triggered by something unsettling that I read.

I am not completely trigger free yet.

I just have to wait and see until 1 year mark. I still have issues with my memory and I saw neuropsychologist twice so far. She would like me to do an assessment in a clinic that specializes in that area.

I have not done it yet, but I will when I can.  

I have not experienced that vulrnable feeling for a while,  which is good.

It has been six years for me since I had a Zoloft reaction.

I have improved over the years, but still not 100%.

Hopefully it will happen for me soon.

I hope everyone is doing well and hanging in there.

♥️ Hopefull

[Mask]

hi hopefull

i got pgad some 2 years ago after withdrawaing from ssri antidepressant at first when i withďrew my pgad was very bad the first year  but as time passes my pgad got milder to the point that it was non existance and now after 9 months of very mild pgad now pgad is worse again its like pgad is comming back any help or suggestion will be much appreciated 🙂

[Hopefull]

On 12/3/2019 at 8:10 PM, Mask said:

hi hopefull

i got pgad some 2 years ago after withdrawaing from ssri antidepressant at first when i withďrew my pgad was very bad the first year  but as time passes my pgad got milder to the point that it was non existance and now after 9 months of very mild pgad now pgad is worse again its like pgad is comming back any help or suggestion will be much appreciated 🙂

Hi Mask,

I feel for you because I know how horrible that it.

Are you taking any suppliments/antidepressants?

Do you get flare ups that are triggered by walking, sitting,  driving, etc?

If you get a bad flare up, cold sit baths help, to calm the nerve in that area.

Try not to wear tight clothing for while.

Hace you seen a doctor? 

Have you had a hormonal test too?

Read about Pudental Nerve and look up Cathy French on Surviving Antidepressants. 

She is more knowledgeable in this area than me.

The urge to urinate frequently is common , and I had that too.

Are you experiencing,  burning,  pain in that area as well?What 

Are you experiencing spasms  down there and uterus contraction too?

Did you cold turkey an SSRI?

It should go away in time, but as you know it take a while.

What flared it up again?

Take care, Hopefull.

 

[Mask]

Hi hopefull,

i have been reading yours and cathyfrench posts and these are very motivational..

No i am not taking any antidepressants or sleeping pills nothing..its been 2 years i havent touched any drug...my pgad which i am suffering again after a gap of no pgad is i think triggered by driving specially by riding the bike...yes i am having burning pain in my private parts...and its very horrible its like very bad pain thats what right now worrying me and making me panicked....i am worried because i thought my pgad which i suffered for 1 and half year is gone and yes it was actually gone i started to lead a normal life i was enjoying but again this hell pgad is back for and again i am depressed....any further advice please.... and i cold turky ssri 2 years earlier when i used to take ads but i am drug free since 2 years now...

[Mask]

i dont  know whats going on now 

is it a wave or what ...or it is like post acute withdrawal....tell me please if it is a wave or something else because its been 2 years since i last took a pill...when i withdrew from ads i got very severe pgad and then after 1 year of withdrawal i started getting better and i became hopefull to the point that i felt normal...excellent sleep and almost no pgad but then out of nowhere  1 week earlier it started again...and i am once again depress..is it a wave or what ?

[Hopefull]

On 12/7/2019 at 12:15 AM, Mask said:

i dont  know whats going on now 

is it a wave or what ...or it is like post acute withdrawal....tell me please if it is a wave or something else because its been 2 years since i last took a pill...when i withdrew from ads i got very severe pgad and then after 1 year of withdrawal i started getting better and i became hopefull to the point that i felt normal...excellent sleep and almost no pgad but then out of nowhere  1 week earlier it started again...and i am once again depress..is it a wave or what ?

 

Hi Mask,.Sorry I thought you were a lady at first.  Lol! 😂 I can understand your distress. 

But remember that it could possibly be a wave and try to ride it out. 

If you are experiencing PGAD while driving,  riding your bike, things have probably flared up again.  But don't panic. Always focus on the the fact that it disappeared.  From time to go you might experience flare ups. Keep your self occupied.  Walk, socialize, try not to dwell on the symptoms,  which I know it is really hard. 

You should see a speacalist and have your self checked out. 

Could it be a pudental nerve issue? I don't know,  obviously I am not a doctor. 

Take care, Zoe.

[Mask]

Hi hopeful

right now i am not havimg  any arousal feeling but burning sensations in my private parts and numb legs upon sitting....its similar  like pudental nerve... i have googled this and my symptoms are same like pudental nerve issue but pgad has also the same issues like pudental nerve...its just so confusing and worthless and time wasting....

[Mask]

My main problem is now bike riding if i dont ride on bike my pgad everything gets normal but as soon as i ride bike pgad gets worse....bike riding is flaring up my pgad...this i have noticed

[Mask]

Hopeful

howz your pgad do you still suffer from pgad and if you have recovered from pgad how long it took you to get recovered from pgad i meant to say how many years ?

[Mask]

On 12/8/2019 at 3:29 AM, Hopefull said:

 

Hi Mask,.Sorry I thought you were a lady at first.  Lol! 😂 I can understand your distress. 

But remember that it could possibly be a wave and try to ride it out. 

If you are experiencing PGAD while driving,  riding your bike, things have probably flared up again.  But don't panic. Always focus on the the fact that it disappeared.  From time to go you might experience flare ups. Keep your self occupied.  Walk, socialize, try not to dwell on the symptoms,  which I know it is really hard. 

You should see a speacalist and have your self checked out. 

Could it be a pudental nerve issue? I don't know,  obviously I am not a doctor. 

Take care, Zoe.

Hi hopefull,

Best wishes to you

i wanted to ask that Typically how long does a wave take to subside

and how are you doing these days

your well wisher 

Mask

[Hopefull]

On 1/3/2020 at 12:04 AM, Mask said:

Hi hopefull,

Best wishes to you

i wanted to ask that Typically how long does a wave take to subside

and how are you doing these days

your well wisher 

Mask

 

Hi Mask,

We all different,  so it is hard to say how long it takes for the wave to subside.

On 12/8/2019 at 9:00 PM, Mask said:

Hopeful

howz your pgad do you still suffer from pgad and if you have recovered from pgad how long it took you to get recovered from pgad i meant to say how many years ?

 

I don't have PGAD anymore. I can't remember how long it took for PGAD to go away. 

It takes a while.

Your symptoms will go away,  it will take a while.  Best wishes,  Hopefull.

 

 

 

 

 

[Mask]

Hi hopefull

sorry i am distrubing you...

i wanted to know that its almost two years since i withdrew from ads...and i am in a wave after huge window....its like....1st year after withdrawal i was in very bad condition...

then after 1 year of withdrawal...i started to get improve...which was very good and it remained several months and now these two month again i am suffering from severe bad condition ....pgad got worse again...panicky feeling....

now please can you tell me its been 2 years and i am back where i started from....am i still in the withdrawal  wave and window condition or its something else....many people on this forum are telling me its a wave ....please shed somelight on this... does withdrawal wave and window effect for more then two years...i am bit hopefull that when i first got pgad and other withdrawal symptoms these were much worse at the begining....and these symptoms improved earlier....please reassure me....

 

Best wishes to you 🙂🙂

Hope you are well

[Hopefull]

On 1/16/2020 at 11:27 PM, Mask said:

Hi hopefull

sorry i am distrubing you...

i wanted to know that its almost two years since i withdrew from ads...and i am in a wave after huge window....its like....1st year after withdrawal i was in very bad condition...

then after 1 year of withdrawal...i started to get improve...which was very good and it remained several months and now these two month again i am suffering from severe bad condition ....pgad got worse again...panicky feeling....

now please can you tell me its been 2 years and i am back where i started from....am i still in the withdrawal  wave and window condition or its something else....many people on this forum are telling me its a wave ....please shed somelight on this... does withdrawal wave and window effect for more then two years...i am bit hopefull that when i first got pgad and other withdrawal symptoms these were much worse at the begining....and these symptoms improved earlier....please reassure me....

 

Best wishes to you 🙂🙂

Hope you are well

 

You are going through WDS. 

As you improve,  you still experience WDS, that comes in waves. Meaning,  as you continue to heal, you start experiencing less WDS, and when you do, it is called a wave. Remember that a "wave", is really a WDS and a "window", is when you don't experience WDS. 

Two years is not enough for your brain to heal. 

You have to give your self more time.

Take care,

Hipefull.

 

 

[Mask]

On 1/22/2020 at 6:55 PM, Hopefull said:

 

You are going through WDS. 

As you improve,  you still experience WDS, that comes in waves. Meaning,  as you continue to heal, you start experiencing less WDS, and when you do, it is called a wave. Remember that a "wave", is really a WDS and a "window", is when you don't experience WDS. 

Two years is not enough for your brain to heal. 

You have to give your self more time.

Take care,

Hipefull.

 

 

Hello hopefull🙂

i hope you are well,

For me in these 2 years i have experinced rollercoaster like symptoms....at start my symptoms were worse and it remained for one year then suddenly i started to improve and i was enjoying it and it remained for almost 1 year..and these 3 months i am again back in withdrawal symptoms...i just want to ask if this was my 2 years withdrawal where i felt severe withdrawal and then big window...so where do i stand now...where things will go from now on...what will be next...because these past 2 years i had severe withdrawal and huge relief in shape of window...where do i stand now if it is back again....please you know more about withdrawal then me ...

 

Best wishes to you you

Hope you are well 🙂

 

Mask

[Hopefull]

On 1/24/2020 at 1:45 AM, Mask said:

Hello hopefull🙂

i hope you are well,

For me in these 2 years i have experinced rollercoaster like symptoms....at start my symptoms were worse and it remained for one year then suddenly i started to improve and i was enjoying it and it remained for almost 1 year..and these 3 months i am again back in withdrawal symptoms...i just want to ask if this was my 2 years withdrawal where i felt severe withdrawal and then big window...so where do i stand now...where things will go from now on...what will be next...because these past 2 years i had severe withdrawal and huge relief in shape of window...where do i stand now if it is back again....please you know more about withdrawal then me ...

 

Best wishes to you you

Hope you are well 🙂

 

Mask

 

Hi Mask, 

I wish I could give you an answer. We are all different. 

I really don't know where you stand,  appart from riding out the wave.

You will heal eventually. 

Are you experiencing small windows at the moment?

It won't last forever,  you will get better. 

Give your self this year to see how you go.

 

[Mask]

2 hours ago, Hopefull said:

 

Hi Mask, 

I wish I could give you an answer. We are all different. 

I really don't know where you stand,  appart from riding out the wave.

You will heal eventually. 

Are you experiencing small windows at the moment?

It won't last forever,  you will get better. 

Give your self this year to see how you go.

 

Hi hopefull...

yes i am experiencing small windows at the moment....some time my symptoms are getting low and some times these are quite severe.....but   why these small windows now for some hours after which i have told you that earlier my window was very big like before i was symptoms free for almost 8 to 9 months...but now its like i am in a wave but i get few hours window...in which i felt relived then again wave continues...what is this...

[Hopefull]

On 1/28/2020 at 10:53 PM, Mask said:

Hi hopefull...

yes i am experiencing small windows at the moment....some time my symptoms are getting low and some times these are quite severe.....but   why these small windows now for some hours after which i have told you that earlier my window was very big like before i was symptoms free for almost 8 to 9 months...but now its like i am in a wave but i get few hours window...in which i felt relived then again wave continues...what is this...

 

There is no point in  questioning what it is, when the obvious answer is that you are going through WDS. 

It is what it is and you need to learn to accept it and work with it.

You are experiencing small windows,  that is great.

I don't have an answer as to why you are being hit by a major wave, after a period of stabilisation.

Look at your drug history and that is your answer.

If you have abruptly stopped taking meds, if you did not tapper of meds slowly, if you took suppliments that exacerbated your symptoms,  all of that adds up.

Read about discontinuation syndrome on this website.

Your brain is healing and think of the waves as wounds.

Your brain is trying not heal the wounds. But because it is a brain,  you will experience emotional symptoms,  but really these are chemical wound in your brain. So every time you get a WDS symptom, the brain is trying to repear it self. The same thing happens when you break your arm. You will get pain unti your wound heal. The same thing happens with the brain,  only it is 10000 more worse, because it is not seen by others, but it is felt emotionally by you.

You are litteraly being emotionally  and physically tortured. 

When the brain starts to truly heal, you start to experience less symptoms and  unlike when your arm breaks,  it takes years for the brain to heal.

It has been over 6 years for me and I still occasionally experience symptoms. 

Stop asking your self WHY and instead start focusing on how you can get through each day.

That might involve physical activity,  going out with friends, even when you don't feel like it, to the shops, walks to the nature.

I still did everything,  despite feeling like not wanting to exist.

I even when on a holiday when I was at the beginning of the my journey and feeling like ****.

You still have to live and take care of others and try not to willow in a self pity it gets you nowhere. 

Get up in the morning and move on with the day. Set your self a routine, mediate if you can, listen to calm soothing music,  eat propley, etc.

Good luck with it all.

 

[Mask]

Hi hopefull

i hope you are good and my best 

wishes for you 🎈

right now i am having severe bladder symptoms

frequent urination and burning sensation....its all i m suffering from bladder problems...

what you say about this

due to frequent urination and bladder problem i am having pain in my bladder...

i used to have arousals but it is normal now.  ..its like my bladder is hurting 

frequent urination

i used to have it earlier... my arousals are like gone which was most distrubing earlier

any suggestion regarding bladder and frequent urination and burning sensation due to bladder 

[Mask]

On 3/11/2019 at 5:09 AM, Dejavu said:

That's so wonderful to hear! I have followed your thread and you are a real inspiration to me. I know your sleep will improve soon. Do you take any melatonin? It has been my saving grace. 

 

The weight will come off. And the more you exercise, the more you will want to exercise. Cutting sugar is huge. I lost 45 pounds that way.

 

I am struggling right now with stabilization after reinstatement and I'm in a tough wave right now. I had mild PGAD symptoms a couple of months ago for 2 days. Yesterday it came back a little more strongly. Its really got me worried. I know you say you had it and it went away. Is it still gone or do you get symptoms? When you had it, did it come and go in waves or was it nonstop miserable the whole time you had it? I could certainly use some reassurance. I'm having to take an rx steroid eye drop right now and its caused my anxiety to go through the roof during this wave. As a result I'm thinking  very negatively at the moment, using the "p" word ("permanent") a lot.

 

I know that you're headed toward a bright future and I don't want to trigger you, but if you feel you can, could you please keep updating your progress? Seems most people jump, then disappear until they sometimes show up on the success story thread, which is understandable. This is a very traumatic thing to go through. But because of that, very little is known about what goes on in between jump and healing. I completely understand if you don't feel you can or should stay in contact on here, but if you choose to do so, it would really help a lot of people, myself included.

 

Anyway, I am so happy that you are near the end of this journey. Blessings and best wishes for the wonderful life ahead. Hugs!!!

 

 

Hi dejavo

i hope you are ok 

how is yòur pgad right now

are you better

please update 

your wellwisher

[Hopefull]

On 2/12/2020 at 2:32 AM, Mask said:

Hi hopefull

i hope you are good and my best 

wishes for you 🎈

right now i am having severe bladder symptoms

frequent urination and burning sensation....its all i m suffering from bladder problems...

what you say about this

due to frequent urination and bladder problem i am having pain in my bladder...

i used to have arousals but it is normal now.  ..its like my bladder is hurting 

frequent urination

i used to have it earlier... my arousals are like gone which was most distrubing earlier

any suggestion regarding bladder and frequent urination and burning sensation due to bladder 

Hi Mask, 

It is common in WDS and if you are experiencing PGAD to experience burnig and frequent urination. 

Try cold sit baths to soothe and burning,  but appart from that there is not much you can do but ride out the symptoms. 

At least your symptoms are improving. 

Just go with the flow, (pun not intended lol, 😂), and focus on getting better.

Take care. 

[Mask]

6 hours ago, Hopefull said:

Hi Mask, 

It is common in WDS and if you are experiencing PGAD to experience burnig and frequent urination. 

Try cold sit baths to soothe and burning,  but appart from that there is not much you can do but ride out the symptoms. 

At least your symptoms are improving. 

Just go with the flow, (pun not intended lol, 😂), and focus on getting better.

Take care. 

its been 1 week my frequent urination is again normal and pain is not there...i mean its there in the background but its like mild...these last 3 days i have slept good and woke up with good energy...but its still there in the background ....i hope it will improve (God willing)

[Hopefull]

On 2/27/2020 at 4:54 AM, Mask said:

its been 1 week my frequent urination is again normal and pain is not there...i mean its there in the background but its like mild...these last 3 days i have slept good and woke up with good energy...but its still there in the background ....i hope it will improve (God willing)

Good sign, you are healing. Keep going.

[Hopefull]

If you require to be sedated for a medical procedure,  could it bring on WDS symptoms,  even though I have been off Mitrazapine for 13 months?

I experience mild symptoms occasionally not frequently. What to do in those situations?

 

[Lzieb]

Hi hopeful, I think I am experiencing PGAD. It's not terrible but it's becoming consistent. I know you managed to heal. Any help you can offer? How are you doing otherwise

[Hopefull]

On 5/1/2020 at 12:13 AM, Lzieb said:

Hi hopeful, I think I am experiencing PGAD. It's not terrible but it's becoming consistent. I know you managed to heal. Any help you can offer? How are you doing otherwise

Hi Lzieb, 

Sorry for my late reply. 

I am sorry to hear that you are experiencing PGAD. 

How are you doing now?

My advice to you would be to be patient and be careful about taking suppliments

 

Sometimes suppliments can trigger PGAD, while you are going through the WDS.

Sometimes cold sit baths can help.

Be patient and kind to your self. It will go away in time. 

Take care,  Hopefull. 

[Survivor1]

Hi Hopefull,  

 

Good to see you are still around on the forum!  I hope you are doing well.  I wonder if you could update us on how your sleep and weight issues are, now that you are off mirt for a while. Hope your life is becoming as normal as it could be after your drug experiences.  Take care and all the best for a full recovery.

[Hopefull]

On 6/6/2020 at 4:05 AM, Survivor1 said:

Hi Hopefull,  

 

Good to see you are still around on the forum!  I hope you are doing well.  I wonder if you could update us on how your sleep and weight issues are, now that you are off mirt for a while. Hope your life is becoming as normal as it could be after your drug experiences.  Take care and all the best for a full recovery.

 

Hi Survivor 1, 

Nice to hear from you. 

It has been a while since I have posted an update. 

My sleep is good. 

I have been well for the couple of months,  but on the 11th of May I experienced bit of a set back.

I am still finding that if I do too much in one day, I experience mild WDS. It was my kids birthday both born in May, so I was running around the day before, picking up cakes from one suburb to the next.  Grocery shopping,  way too much sugar on the day, and bam that night I felt like I was about to have an adrenalin surge. I felt a bit shaky and found ot hard to calm down, I also experienced a bit of intrusive thoughts,  which I did not have for a long time, and I knew that I over did it. 

I am just wondering,  when will all of this completely settle down?

Before the antidepressants,  I could do many things in a day, drive to and from multiple times  and not feel anything. 

But now, I still have to be careful even though I am no longer taking anything. 

I still have to be careful with herbal teas.

I still can't have some teas.

It has settled down a bit now, but I really have to watch not to eat too much sugar especially before bed.  It can set me off.

But from my understanding is that even when you get off meds snd you have been off for a while, (it has been 16 months for me), from time to time you might experience a set back until it completely goes away. Has this been the case for others? 

I have lost some weight,  but I am still not how I was before the meds.

I have been trying to eat more healthy and watch the sugar intake.

But I have had months of feeling good.

I am still not 100% but I am hoping that in time I will get there. 

How are you doing these days?

 

[Survivor1]

Hopeful,

 

It's great that you are doing reasonably well.  I hope to be there someday too!  I can't believe how innocuous things such as planning a party, eating the wrong thing, can have such negative consequences.  I'm sure though that as you put enough time behind it, you'll be doing even better.

 

I've been rocked by several setbacks from steroids and antibiotics, but I feel that I am slowly coming out of them (hope I don't jinx myself!).  So hopefully I can get on with tapering the last drug I'm on.  I too cannot tolerate supplements.  I'm only taking a capsule of turmeric and Vitamin D.  I'm not messing with anything else!

 

Please continue to update how you are doing.  I wish you well.

[Altostrata]

Hopefull, if you look back over the last 6 months, how have your symptoms changed?

 

Please update your signature.

[Hopefull]

On 6/14/2020 at 3:03 AM, Survivor1 said:

Hopeful,

 

It's great that you are doing reasonably well.  I hope to be there someday too!  I can't believe how innocuous things such as planning a party, eating the wrong thing, can have such negative consequences.  I'm sure though that as you put enough time behind it, you'll be doing even better.

 

I've been rocked by several setbacks from steroids and antibiotics, but I feel that I am slowly coming out of them (hope I don't jinx myself!).  So hopefully I can get on with tapering the last drug I'm on.  I too cannot tolerate supplements.  I'm only taking a capsule of turmeric and Vitamin D.  I'm not messing with anything else!

 

Please continue to update how you are doing.  I wish you well.

Thank you.  I wish you all the best with tappering off the last drug you are on.

You will get there and feel well too. 

 Getting off the drug is a tough hurdle to overcome,  but life after drug is not perfect and the nervous system is still fragile. 

You can still experience set backs even if you feel well for so long. 

It is settling down,  but last night I experienced mild adrenalin surge. 

It comes around 4:00am.

It is a bit unsettling but I know that it will pass.  I was also feeling a bit teary yesterday,  so I know that my nervous system is a bit unsettled still.

But I know that it will get better. 

 

[Hopefull]

On 6/14/2020 at 3:58 AM, Altostrata said:

Hopefull, if you look back over the last 6 months, how have your symptoms changed?

 

Please update your signature.

Hi Altostrata,

Since January, 

I was feeling well.  I did not experience much symptoms. I didn't experience that vulnerable feeling like I am about to lose my mind, reminders, etc. I felt that I was finally healing.  Until 10th of May I felt good, until I experienced a set back. 

Right now,  I am experiencing very mild adrenalin surges at around 4:00am. Yesterday I felt a bit teary,  little bit of intrusive thoughts, reminders,  etc.

It is like I am experiencing mild WDS symptoms. 

I have noticed that sugar does not always agree with me, I have cut down on sugar,  but not entirely completely,  which I am going to do, but it is not easy.

When you went through this,  did you also find that even though you might be off meds for a while,  you can still occasionally experience a set back,  until one day it completely disappears?

I know that it will go away and settle down,  but it can be a bit unnerving,  only because I just want to move forward in my life and put this behind me.

I wish you well,  hope that you have been looking after your self during these crazy times. 

Thank you for stopping by my thread.

Hopefull.

[Altostrata]

That surge at 4 a.m. is very common. It is related to morning light telling your body it's time to wake up. 

 

See 

 

Waking with panic or anxiety -- managing the morning cortisol spike

 

Tips to help sleep -- so many of us have that awful withdrawal insomnia

 

Path to Better Sleep FREE online for everyone from the US Veterans Administration

 

Music for self-care: Calms hyperalertness, anxiety, aids relaxation and sleep

 

What is the sleep cycle?

 

TV or computer use in evening can disrupt sleep: Bright light signals the brain that it's daytime

 

More about how light stimulation affects our body clocks

 

[Hopefull]

17 hours ago, Altostrata said:

That surge at 4 a.m. is very common. It is related to morning light telling your body it's time to wake up. 

 

See 

 

Waking with panic or anxiety -- managing the morning cortisol spike

 

Tips to help sleep -- so many of us have that awful withdrawal insomnia

 

Path to Better Sleep FREE online for everyone from the US Veterans Administration

 

Music for self-care: Calms hyperalertness, anxiety, aids relaxation and sleep

 

What is the sleep cycle?

 

TV or computer use in evening can disrupt sleep: Bright light signals the brain that it's daytime

 

More about how light stimulation affects our body clocks

 

Thank you.  I read the first part and yes I am experiencing low grade morning surges.

It seems like it is common for the cortisol spikes to return after not experiencing the symptoms for a while. 

I have to cut out phone time before bed.

 

[Altostrata]

Darkening your bedroom and wearing a sleep mask can help.

[ChessieCat]

15 hours ago, Hopefull said:

It seems like it is common for the cortisol spikes to return after not experiencing the symptoms for a while. 

 

I've experienced low grade spikes previously and have been getting them again recently.  So yes, they do come and go.

[Hopefull]

12 minutes ago, ChessieCat said:

 

I've experienced low grade spikes previously and have been getting them again recently.  So yes, they do come and go.

 

Thank you.  It is reassuring. 

I hope that in time that it will go away along with the other milds symptoms I have been experiencing lately.