Boris: one hell of a journey

[Boris]

Hi!

 

I use to post occasionally on Paxil Progress under Basil but took a step away in the mist of withdrawal and confusion. I only found out recently the site had gone. I'm not sure what help I can get here but I though I would share this long story and to get it off my chest/help myself in some way.

 

I'm from the UK near Manchester and currently on 25mg of Pregablin/Lyrica. I also take 50mg mirabegron to try calm my bladder but that doesn't seem to do anything.  I'll share my story first and how I got to this point but firstly I have so much empathy for people here and others going through this. It has been one of the most cruel and crazy journeys which it seems mostly only people who have experienced it, believe....

 

Male

36

Good career

one child

Single

MENTAL

 

Current Symptoms:

 

Depression, lack of motivation, no drive or focus

This has come on over the last couple of years to where I feel dead inside now

Fatigue and brain fog

I've had bouts of this in my life but this has been constant for a year now. Sometimes I can't work with it.

Frequent urination, genital sensations, pain

Major problem the last 18 months and probably made the depression worse. Touch wood I now have days where I'm nearly fine and haven't had pain in nearly a year. Had nearly every medical test going and nothing can be found apart from a small bladder which I doubt is the problem as I would have always had this. I also have the sensation when nothing is in my bladder.

Anxiety

I've always been this way, not the withdrawal anxiety at the moment (fingers crossed)

 

Story (warning, very long)

 

April 2007

I've always been highly strung and critical but after pushing myself with my final year Uni artwork I developed Repetitive strain injury in my hand which spread to both arms. Nothing structurally wrong was found and I freaked out that my career was over before it started. I was anxious and feeling down, my ex advised I get something to help as she was out of ideas how to help. My doctor had suggested CBT and put me on the list, an emergency doctor after suggested PAXIL/SEROXAT/paroxetine 20MG. If only I knew now how trivial at the time that anxiety and low mood was!

 

August 2007

Paroxetine 20mg, felt it straight away and within one week my mood was up. Arm pain was easier to deal with, started eating again, playing games and doing stuff within a month. I went from an anxious mess to drinking lots, over eating, smoking, occasional drug use, sleeping most of the day, annoying my ex but I felt great. I went form 11.5 stone up to 14, I sweated a lot, sexual dysfunction but indulging in stuff felt amazing.

 

August 2008

Weight gain was starting to annoy me and I had realised my behavior had changed with the medication. At this point I was having periods of no arm pains. I had started missing doses, temporary GP told me to just stop cold turkey. No problems until 3 month later when the arm pains came back full force.

 

December 2008

Arms pains were becoming a major problem so a GP put me back on Paroxetine 20mg. Worked fast and pulled me out of a hole quickly, found a new job and all the naughty behavior came with the meds again.

 

August 2009

I started reducing the medication, I can't remember but it was rapid with no obstruction from the GP. Some brain zaps and strange symptoms but nothing that bad.

 

November 2009

I had noticed through the last 3 months I was highly tense and irritable then the arm pains came back. I was so distraught I couldn't get rid of them without paroxetine. My ex suggested I try St john's wort which did nothing after a few weeks. I stupidly went to the GP on the Friday after stopping the St john's wort on the Thursday and asked for to go back to Paroxetine without telling her I was on the herbal remedy recently.

 

I thought before was bad but now I was entering hell.

After 2 days back on Paroxetine I woke up to a panic attack in the night and uncontrollable agitation, felt like my mind had exploded. I couldn't sleep, eat, sit still, stay safe. I had such strong suicidal feelings but no one would believe how I felt. I walked the streets at night sweating, pacing, heart pounding waiting for the doctors to open. I explained at the Emergency room what had happened but the Doctors did nothing. I was obsessed with serotonin syndrome due to st johns wort being taken few days before Paroxetine. I phone the crisis team and they gave me diazepam 2-4mg to take as needed and zopiclone 3.75mg to get me to sleep. They put me to sleep but after 1 hour I was awake again. I was then switched from Paroxetine to 20mg of Citalopram which increased the problems ten fold. I admitted myself to a ward as I couldn't take it anymore. 

 

In the ward I was given Clonazepam, zopiclone and the citalopram. I calmed down and slept for the first time in a weeks. I thought things were better but it would appear it was just the clonazepam covering up the issues. I decided to checkout as I spent most of my time playing pool with the young nurses and felt pretty good. When I got home I realised the clonazepam was so addictive after some research so I stopped it. I went back into hell.

 

At this point I was off sick from my dream job I had got 6 months earlier, lost my flat, split from my partner, living back at my mums. Then I also found we had conceived a child in the middle of this madness.

 

Christmas 2009

I saw an emergency Pysch Doctor and she removed me from all medication over a week. Thankfully it lowered all the mental and physical symptoms some what but the my arm pains were on fire and I was very low in mood.

 

January 2010

I was attending a day clinic and the medical practitioners would not listen to my story. Paroxetine had worked before so I was convinced to try again after no luck with propranolol and buspar. Started at 5mg and worked up to 20mg. I wanted to kill myself, I had visions of sticking a blade into my stomach but I pushed through with the symptoms.

 

February 2010

By the end of February I suddenly had a pleasant thought. The paroxetine kicked in big time and I was back to feeling good with all the usual side effects. I did some horrible things over the next few months including taking a drug on my birthday (MDMA). One week after I slipped into some horrible extreme anxious/agitated state which last 2 weeks.

 

April 2010 - August 2010 

Within this time I started having the waves of extreme periods of symptoms to then very high mood. 

Akathesia

Extreme anxiety

depression

Not eating or sleeping

 

Each wave got shorter and good periods got longer. My son was born end of August and my experience I realised I could not mess about anymore. 

 

March 2011

I joined Paxil progress and started connecting some dots. Yes I had taken illegal drugs on a few occasions but I saw my symptoms with the Paroxetine in other people's stories. At this time I was still having occasional days of extreme agitation and anxiety. A night out drinking could trigger this off sometimes. I was nearly 16 stone and couldn't care less about things. I decided it was time to taper off.

August to November 2011

I had two major waves while tapering, both lasted 2 weeks.

 

November 2012

I had tapered down to 1.25mg with not too many problems. After feeling slightly out of sorts for a week one lunch time the extreme anxiety suddenly turned on and I went into a major crash.

 

December 2012

Crisis team

Severe akathesia/anxiety

Suicidal ideation
Nausea

So many symptoms but no arm pains.

 

I updosed to 5mg Paroxetine with no relief. Pysch doctor/mental health team would not listen to the theory of severe withdrawal from Anti depressants. I was diagnosed with severe GAD and told I need to take Pregablin and stop the Paroxetine. I did not want to add anything else and held on till end of January. Tried Propanonol again which did nothing and took occasional Benzos (once a week for a break)

 

Jan 2013

I stopped going to Paxil progress as it made me more anxious. I was being discharged by the crisis team as I refused to take Pregablin. I was suicidal and my body was on fire but I was freezing. I would spend most mornings in despair with my body jerking and pacing with the akathesia and extreme anxiety. I sometimes would feel normal in the evenings. My family was lost what to do and upset. I had been off work 2 months, not seen my son. I had also managed to get an appointment with Dr Healy in Wales but had to wait till April.

 

I decided to take the Lyrica end of Jan.

 

February 2013

The Lyrica had no start up effects for me and I hate saying it did help somewhat. It gave me a window (I think it was that) I was able to get back to work by March. 2 x 150mg Lyrica a day and 5mg Paroxetine. I decided this was my fate for now. I started the pattern of waves and windows, the waves were very intense but I worked through them.

 

April 2013

I saw Dr Healy and he listened. He asked my what I wanted him to do for me and I wasn't sure. He did back up my story and it's on my file. He expressed concern about the Lyrica as the new drug everyone was getting prescribed and to come off it. I tried with his withdrawal plan but I was just too scared with the waves to alter anything. He suggested to stay on the Lyrica and come off the paroxetine when ready. Everything seemed a bit hopeless but I had to keep pushing through these waves which were getting shorter luckily.

 

March 2015

Life had been better and I had done stuff I thought I'd never do. I had been very successful at work. I had a couple of major waves and had tried to get off Lyrica once more but a big wave took me back on it. I decided I would taper off the paroxetine finally. I had to fight with the GP to prescribe me liquid paroxetine. Some GP's had now started confirming the withdrawal of Paroxetine to me and my clinic had stopped prescribing it.

 

February 2016 

Tapering using liquid was going fine apart from lack of enjoyment and mood dropping. I then experienced a period of frequent urination which my GP couldn't find a reason. It disappeared... and came back on occasion. I was still on 2x150mg Lyrica/

 

April 2016

I woke up with tinnitus white noise in one ear randomly and still have it. Nothing could be found to be the cause.

 

April 2017

I finish my paroxetine taper with no problems but at the same time a relationship breaks down and I feel very emotional. This person had helped me through a lot since 2013 and I missed her dearly. I chose to have no more children after this experience so we split.

 

August 2017

With usual perfect timing over just 3 month the withdrawal anxiety started with the akathesia to follow. I was still dealing with the breakdown of my relationship at the same time, life went to sh*t. Very depressed at the same time.

 

Next five months involved in waves:

Extreme anxiety

Akathesia

Depression

Nausea

Diarrhea

Freezing chills

 

GP's would constantly say I need Sertraline, everyone wanted to prescribe me this drug. A GP wrote to a psych doc as I wasn't ill enough to be seen apparently. I don't know why I let them as I knew no one could help but prescribe drugs. Mitrzapine and Promazine was prescribed. I got the prescription but never took them thank god.

 

December 2017

Just before Christmas the wave ended and hasn't come back.

 

January 2018

I was so happy I was now 3-4 weeks of a good window. Finally my mood was up and I started living again, still on 300mg Lyrica a day. This was cut short after going to the toilet one day and then urgently needing it again. What followed has pushed me as far as the akathesia and anxiety to nearly ending my life. I never knew needing to urinate could be so torturous. I saw my now regular GP and he prescribed all kinds of medications to try control my frequent urination but nothing worked. By the third week I was experiencing pain in my bladder and strange sensations in my genitals. My life was now even more restricted than before, I 24/7 needed to urinate regardless if I had anything in my bladder. My GP had suspected Lyrica as the culprit but I wasn't ready for rocking that boat yet.

 

August 2018

I had every test done with no problems being found in urology, I managed to get the pain to subside to an acceptable level with stretching. I now started to experience severe fatigue and brain fog, luckily I was off work for the last 4 month but had to go back.

 

December 2018

Fatigue, brain fog, depression increased, frequent urination. Occasional better day of less urinating but life seems pretty hopeless with this never ending nightmare. The sensations in my genitals are unbearable as well and it now seems that anti depressants are the treatment to stop me urinating and for the fatigue haha!

 

January 2019

My refusal to take anti depressants my GP suggests the Lyrica being the problem with urological symptoms. He suggests 1/2 the dose to see if it improves as I'm in such a state. Strangely it seems to work but in waves and windows again with stress seeming to set it off immediately.

 

Today

So here I am at 25mg of Lyrica, my urinating seems to go up and down. Just when I feel it might be gone it comes back for a few days intensely. I've not had the strange genital symptoms in months thankfully. I have the worst brain fog and fatigue which occasionally lessens. I'm depressed which I think is due to how long this stuff has been going on. My life is very restricted but I've tried to break free and chose to always push myself even with the symptoms. I mean someone suggested a holiday so I went to South Africa which was absolute hell with the urinating but I still did it. I really want to break free of this and finally enjoy life again. I sometimes fear my brain is permanently broken after this, I've not felt happiness and enjoyment in so long. I'm hoping the Lyrica is the cause of the Fatigue/brain fog/frequent urination and things will get better once I'm off.

 

I didn't follow a 10% taper of Lyrica as I'm desperate to get relief from urinating which seems to improved with the reduction. I've only experienced some withdrawal from 50mg to 25mg with even more fatigue and zombie like state.

 

Jan: 75mg 2 x a day

Feb: 75mg a day

April: 25mg 2 x a day

July: 25mg a day

 

I'm not even sure what I'm asking but I thought I'd share this very long story, good to actually get it all down. Hopefully this story will come to end soon. 

 

It seems crazy to go on a medication for low level anxiety/low mood due to essentially stress and go through this!

 

Boris x

[Altostrata]

Welcome, Boris.

 

I am sorry you've gone through this. Thank you for joining and adding your voice to the community.

 

What times of day do you take your drugs? How do you feel before and after taking each one? Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms. You can post them in this topic with a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right.

 

Have you had any side effects from Mirabegron? See https://www.drugs.com/ppa/mirabegron.html

[Boris]

Hi!

 

I take the lyrica 25mg in the evening (10pmish) as I thought it would be better in case it disrupted sleep.

 

I also take one Magnesium citrate 650mg (200mg magnesium) in the morning and evening.

 

I have been taking Vitamin b6 to see if it helped the fatigue with no luck.

 

I take the Mirabegron 50mg in the morning. I've not taken this for 2 days now as it doesn't seem to do anything at all for my frequent urination. Been on this twice with no effect or side effects so far. Unless it's adding to the fatigue, brain fog. Hard to tell. I have been getting hives lately and I just saw that on the list. GP told me to stop taking it, I don't think there is any tapering protocol for this drug. I stopped it last year with no problems.

 

Right now I feel no difference after taking the medication. 

 

I spoke to my GP this week. He's on board with most stuff. He has told me to hold for 2 months and then he will prescribe liquid Lyrica to do 10% a month. Hopefully that will give me the window to see if I have problems from how much I've reduced. My frequent urination has improved a lot since the reduction thankfully.

 

I'll post some notes next for the daily symptoms. It's basically me feeling like a zombie.

 

[Witsend81]

Hi Boris.  I've read your story, in a lot of respects it's similar with what I've been through recently.  Bloody awful.  Really feel for you, I know what it's like and when it's bad it's HELL.  Not many people around understand what we are going through - hopefully this will change once the wider world realises what these drugs do to people.

 

After my ordeal, I've began to stabalise, but I don't feel that I'll ever be the same person again, it's fundamentally changed who I am.  But we have to hold on and keep going, and find a way back to ourselves.  

 

Best of luck with your journey

 

Wend

[Boris]

I've only just realised how big that post/story was haha.

 

It really is hard getting people to understand. I've found it better now than when it first happened in 2009.

 

No I agree I don't think you can be the same person but that doesn't mean it won't eventually be a better version of yourself after this experience. I would say this is the biggest traumatic experience of my life and I was emotionally abused as a child. Kind of ironic the medication has caused worse trauma in the long run! 

 

I would say I'm mostly past the anti depressant withdrawal unless it's still causing my problems now or if it's the Lyrica.

 

This weather doesn't help up north does it haha.

[Boris]

So I'm going through a flare/wave of bad frequent urination and strange pelvis sensations. In the flip side the brain fog, fatigue has gone. Seems I either have one or the other.

 

My physio and consultant have diagnosed me with pelvic floor dysfunction but yet my GP says it's the Lyrica. Either way I'll continue to taper with my GP and do the physio to relax my pelvic floor. 

 

Frequent urination is up there with Akathesia for me, feels like torture. Got to keep going and believe in recovery.

[ChessieCat]

urination-and-bladder-issues-male-and-female

 

[Boris]

Thanks Chessiecat.

 

Terrifies me this one as it's been going on 20months with some back and forth improvement this year. 

 

My GP refuses to connect it to the paxil as it started after being off the drug nearly 9 months.

[Kostas]

2 hours ago, Boris said:

Thanks Chessiecat.

 

Terrifies me this one as it's been going on 20months with some back and forth improvement this year. 

 

My GP refuses to connect it to the paxil as it started after being off the drug nearly 9 months.

If for any comfort, 

Various weird Symptoms appeared to me, 4 years after being off citalopram! 

Although gradually accumulating all this time. 

Finally they faded away, although I was terrified, and now for 2 years I am OK. 

[Boris]

10 minutes ago, Kostas said:

If for any comfort, 

Various weird Symptoms appeared to me, 4 years after being off citalopram! 

Although gradually accumulating all this time. 

Finally they faded away, although I was terrified, and now for 2 years I am OK. 

 

Thank you, that really does help to hear that. 4 years after, that's really crazy. This started a few weeks after my extreme anxiety/Akathesia ended.

 

So glad you've got through withdrawal! 

[CoolheadLuke]

On 8/16/2019 at 12:33 PM, Boris said:

So I'm going through a flare/wave of bad frequent urination and strange pelvis sensations. In the flip side the brain fog, fatigue has gone. Seems I either have one or the other.

 

My physio and consultant have diagnosed me with pelvic floor dysfunction but yet my GP says it's the Lyrica. Either way I'll continue to taper with my GP and do the physio to relax my pelvic floor. 

 

Frequent urination is up there with Akathesia for me, feels like torture. Got to keep going and believe in recovery.

 

I'm afraid I don't have any suggestions, but just wanted to say as a fellow 36 year old dude with bladder/prostate/urination issues, I definitely sympathize!  I think people don't always realize how disruptive that stuff can be - things like always needing to know where bathrooms are, and avoiding long trips / new places for the same reasons.  Hope that you continue to improve!

[Boris]

On 8/18/2019 at 3:26 AM, CoolheadLuke said:

 

I'm afraid I don't have any suggestions, but just wanted to say as a fellow 36 year old dude with bladder/prostate/urination issues, I definitely sympathize!  I think people don't always realize how disruptive that stuff can be - things like always needing to know where bathrooms are, and avoiding long trips / new places for the same reasons.  Hope that you continue to improve!

 

Hey! Crazy isn't it, a really distressing symtom. Mine seems to go then come on really strong. I'm slowly trying to relearn to relax my pelvis and abdominal muscles. I can hold for like 6 hours but it's the sensation that drives me mental, I know I don't need to go at times but yet it persists.

 

I've had every urology test under the sun and finally have that diagnosis of pelvic floor dysfunction so hoping I can get back to some what of a normal life.

[Boris]

On the positive side I've been away for a few days with my son, the urination has behaved and I've felt a lot better. I've felt very guilty in the past while being with my son and not functioning even though he hasn't noticed. No brain fog or fatigue apart from eating too much junk with my son putting me into a coma.

 

Also after the whole Paxil turning my world upside down I now can sleep in and nap during the day without waking up in a panic. 

 

I've had slight twinges of being interested in stuff the last week which felt nice. I'd say for the last 3 years that had been constant the lack of interest. 

 

I'm 28 months off Paxil/Seroxat and 25mg of Lyrica to go so I'm quite excited to be nearly there. I nearly gave in several times with GPs trying to convince me to take a fair few other psych meds.

[Witsend81]

Hi Boris

 

I find spending time with my son helps me a lot, I focus less on how I'm feeling and it forces me to be positive - although it is tiring to say the least.

 

7 hours ago, Boris said:

Also after the whole Paxil turning my world upside down I now can sleep in and nap during the day without waking up in a panic. 

 

I still get this, not as intense as when I first crashed, but still bloody well annoying, makes me afraid to fall asleep during the day because I know I'll wake up feeling 10x worse!

 

On the bright side, looks like we're going to be in for a bit of good weather over the next couple of weeks 🤞😎

 

Wend

[Boris]

On 8/19/2019 at 9:54 PM, Witsend81 said:

Hi Boris

 

I find spending time with my son helps me a lot, I focus less on how I'm feeling and it forces me to be positive - although it is tiring to say the least.

 

 

I still get this, not as intense as when I first crashed, but still bloody well annoying, makes me afraid to fall asleep during the day because I know I'll wake up feeling 10x worse!

 

On the bright side, looks like we're going to be in for a bit of good weather over the next couple of weeks 🤞😎

 

Wend

 

Yes please, some nice weather in rainy Manchester would be nice!

 

It eventually goes the waking up in panic after a nap. It's really hard as you're so tired from dealing with the symptoms that you can't stay awake at times. It's great feeling being able to do that again.

 

My GP gave me a prescription for the liquid Pregablin so I can begin tapering off that last capsule soon  

[Sassenach]

Hi Wend.

 

How are you doing?

 

Sass

[Witsend81]

Hi Sass.  

 

I'm ok.  I'll reply properly in my thread.

 

Wend

 

 

[Boris]

Brain fog and fatigue gone for nearly 2 weeks. Something positive.

 

Frequent urination, strange changing urinary symptoms still here and ruining any attempts of trying to get back to a normal life. Physio now says pelvic floor muscles are fine so no one has a clue what is wrong with me. GP putting it down to pregablin. 

 

Absolutely desperate to stop feeling the urge to urinate/pressure in bladder/penis. I can't focus on anything or socialise with it. Causing depression and anxiety on top of the withdrawal.

 

I've had all the tests/investigations and was praying for them to find something!

[Erell]

Hi Boris 

I'm sorry for these painfull symptoms !

I know you can't control them, however, in order To work on the anxiety it causes To you, my advice would be To start practicing méditation. This could help you To observ your urge To urinate without fearing it appears, and learn To not fearing it.

 

I know that it might seems To be a poor solution, but meditation did help me at some points of my WDs. 

 

Let's give it à try?

 

All my best.

 

Ps : apologize for my English 

[Boris]

First of all, brilliant English Erell!

 

Secondly I think you're probably right, I'm getting secondary anxiety over this issue. I find it very hard to relax when normal. I think I might give meditation a shot or even mindfulness. Hopefully help with the fear of this symptom.

 

It's like I've got so close to getting my life back getting past the paxil akathesia/terror/extreme anxiety and then hit with this for nearly 2 years.

 

I just hope one day I won't feel the urge to urinate constantly. It seems like a daft symptoms but is very distressing.

 

Thanks for your suggestion

[Erell]

Oh thank you Boris : silly but your compliment made me Feel good! so I'm still able To have a functionnal brain ! 😄 If I ever get able To travel again, I Will have a very specific vocabulary...not sure every english speaker is tappering! 😉😃

 

I wouldn't say it is a Daft symptom! We can't prioritize symptoms, every life course is individual, and all matters is that this is a significant symptom To you!

All we have to know is that this symptom is avoiding you from feeling better.

Plus, I totally understand : I experimented nausea this month and was really scared of vomiting in front of people! Since I told myself: "Well, I Will vomit in the street, and so what? ", I Feel much better about it! 

 

Have a great evening!

[Rhiannon]

Hi Boris, I think I remember you as Basil over on PaxilProgress, just saying hello. I don't have any helpful suggestions or anything, so sorry to hear what you're going through. Although it sounds like overall things are getting better, finally off the Paxil, good for you! Anyway I just wanted to say hi, nice to see you.

[Boris]

1 hour ago, Erell said:

Oh thank you Boris : silly but your compliment made me Feel good! so I'm still able To have a functionnal brain ! 😄 If I ever get able To travel again, I Will have a very specific vocabulary...not sure every english speaker is tappering! 😉😃

 

I wouldn't say it is a Daft symptom! We can't prioritize symptoms, every life course is individual, and all matters is that this is a significant symptom To you!

All we have to know is that this symptom is avoiding you from feeling better.

Plus, I totally understand : I experimented nausea this month and was really scared of vomiting in front of people! Since I told myself: "Well, I Will vomit in the street, and so what? ", I Feel much better about it! 

 

Have a great evening!

 

You too!

 

1 hour ago, Rhiannon said:

Hi Boris, I think I remember you as Basil over on PaxilProgress, just saying hello. I don't have any helpful suggestions or anything, so sorry to hear what you're going through. Although it sounds like overall things are getting better, finally off the Paxil, good for you! Anyway I just wanted to say hi, nice to see you.

 

Hi Rhiannon, I do remember your user name. Yes I finally made it off the blasted stuff just over 2 years ago. I left Paxil progress it a bit of a state as I think it was making me more anxious! I'm so close to feeling myself, hopefully get there one day. Hope you're doing well

[CoolheadLuke]

14 hours ago, Boris said:

I've had all the tests/investigations and was praying for them to find something!

 

I know the feeling!  

 

Have you had a cystoscopy to rule out interstitial cystitis (bladder inflammation)? 

[Boris]

3 hours ago, CoolheadLuke said:

 

I know the feeling!  

 

Have you had a cystoscopy to rule out interstitial cystitis (bladder inflammation)? 

 

Yep had the camera up there twice. First when I had a few short episodes of this in 2016 and again 2018. Nothing was found apart from a bladder on the small side. I will have always had this I was told so it doesn't explain the sudden symptoms. Urodynamics shows no problems with the muscle that causes overactive bladder and I can actually hold a decent amount before having no choice but urinating, the sensations just get so intense.

 

Physio keeps telling me bladder retraining but I've been doing this for over a year. Trying to hold for at least 2hrs should of showed results now.

 

The symptoms change and move, they come and go. Some going for weeks but frequent urge to go is the main one linked to all these.

 

Bladder pressure/full

Bladder feels unstable, almost shaking/nervous

Urethra sensations/spasms

Feel the urge to urinate in the end of my penis

Pain/aches randomly come and go

Weak stream

 

Basically I really don't need to urinate but something is telling me I do. I was looking at PGAD, I have strange penis sensations come and go but not the arousal, erections etc. I have normal sexual function. I've found getting an erection will get rid of the urge to urinate which makes sense but I can't walk around like that all day haha. Sorry for the info! 

 

I had 5 days 2 weeks ago where it all nearly went. To be fair this year I've had many more times where it has been better and I've been reducing the Pregablin so I'm hoping it is linked to that. This all feels nerve related in someway.

 

 

[Boris]

Now for something positive!

 

I've noticed over the last 2 weeks I'm waking up happier (until the urge starts)

 

I've also have become a bit more interested in work, personal artwork. Did some of my own work in over a year.

 

I'm getting nice tingling feelings throughout my brain/head. I've not had that for so many years. I don't know how to describe this but it's like a overall good feeling. Almost feels like a reboot of my brain.

 

Anxiety/depression which I know is linked to meds has been nearly gone. (Situational versions linked to urination are there)

 

Fatigue and brain fog gone.

 

Nice window to have, hope it sticks around. It's been so long since feeling any of the above.

[CoolheadLuke]

On 9/26/2019 at 12:14 AM, Boris said:

 

Yep had the camera up there twice. First when I had a few short episodes of this in 2016 and again 2018. Nothing was found apart from a bladder on the small side. I will have always had this I was told so it doesn't explain the sudden symptoms. Urodynamics shows no problems with the muscle that causes overactive bladder and I can actually hold a decent amount before having no choice but urinating, the sensations just get so intense.

 

Ugh, sorry to hear all that.  I've just had the scope once, but they did 3 biopsies while they were in there so I was in a lot of pain afterwards.  

 

On 9/26/2019 at 12:34 AM, Boris said:

Now for something positive!

 

I've noticed over the last 2 weeks I'm waking up happier (until the urge starts)

 

I've also have become a bit more interested in work, personal artwork. Did some of my own work in over a year.

 

Nice!  What kind of art do you make?

[Boris]

15 hours ago, CoolheadLuke said:

 

Ugh, sorry to hear all that.  I've just had the scope once, but they did 3 biopsies while they were in there so I was in a lot of pain afterwards.  

 

 

Nice!  What kind of art do you make?

I work on computer games and like to make characters and stuff. Nice to have some motivation again after 2 years of nothing!

[Erell]

Hi Boris

 

Thank you very much for your supportive message! So needed! Thank you!

 

Hope your day is good!

[Boris]

Just over 2 weeks with near normal urinary function, longest in 20 months. Still go a lot but closer to normal and doesn't bother me. A very nice window but it's following the windows and waves pattern now I'm down on the Pregablin. 

 

Brain fog and fatigue now and again but much better than it was.

 

So overall pretty good. I've actually realised after the years of withdrawal problems I can function alone and handle stuff. The fear has lowered dramatically.

[Boris]

Nearly made it to 4 weeks with much better urinary symptoms but back the last few days, although not as bad.

 

Very thankful for the window but so frustrated as I really want to move on from this and it's holding me back. It's 10years in a month since I had my first adverse reaction. I want a relationship and I want to change my job. I think this has added to the depression over the years being held prisoner by this.

 

Anxiety/depression/fatigue better and brain fog hardly there.

 

At 8mg of Pregablin.

[Boris]

Tempting fate but rarely getting brain fog and bad fatigue (still always tired) Focus is better.

 

Frequent urination still up and down but better. Strange genital sensations and pressure pop up now and again. Thank God the urination isn't 24/7 now.

 

Seems that a lot of these symptoms have improved with the reduction of pregablin. Not really had any withdrawal symptoms yet apart from the odd headache and spaced out feeling but I'm expecting it.

 

At 1mg of Pregablin. I have gone from 300mg to 1mg in nearly a year but I was so desperate with the 24/7 urination urge that I was suicidal at times.

 

Unfortunately my tinnitus hasn't improved that started while taking this drug. It I've mostly accepted that.

 

10 years this week since all this started, I'm hoping this is going to be a new chapter of my life soon.

[Boris]

I sometimes wonder if the bladder/pelvis/genital symptoms were actually from the Paroxetine. Started 8months after finally stopping. I see a lot of similarities to how people talk about PGAD, I just don't/didn't have the arousal but nearly all the other symptoms.

 

Guess it's the usual problem of nobody knows with this stuff.

 

I'm now left with tinnitus and frequent urination,. My bladder feels like it cannot hold much at all before setting off signals to go. I'm aware I've developed a secondary anxiety about this but I don't see how anybody wouldn't after dealing with it for 2 years.

 

But for now fatigue/brain fog, genital sensations, bladder pain have gone.

 

I'm using this as kind of like a diary to waffle on.

[Mask]

Hi boris 

it very  nice to hear that you are feeling good most of the people on this forum with pgad are almost feeling very much relived from pgad after 2 years ...i also have noticed my pgad got milder as time passes pains frequent urination and arousals subsided....but now its like whenever i ride bike my pgad flare up....its bothering me right now....i hope you continue to improve...but it seems  as more time passes it will eventually completely subside ... best wishes to you 🙂

[Boris]

Brain fog and fatigue still staying away luckily. I can read/learn and I'm starting to recall information again.

 

Unfortunately my bladder just seems ruined in all ways. Sometimes I can't hold any liquid in it. Sometimes I feel the constant urge to go with strange nervous sensations shaking through my bladder and genitals. Sometimes I produce insane amounts of clear urine without drinking anything requiring me to empty a full bladder every 30mins. Sometimes I feel like I can't walk because of the physical sensations. Sometimes I lose control mentally because of going through this. Sometimes I feel like it might actually be ok but I can't relax because of this experience and I'm waiting for the sensations/need to urinate to come on.

 

And then sometimes it just dissapears for a few days.

 

It's a sad and miserable way to live. Life is on more of a hold than it was when dealing with the main part of withdrawal. I just hope one day my bladder or whatever is going wrong can be consistently manageable so I can have a life again. I was so close to what I thought was recovery and then this started.

 

Being suicidal at times because of urinating just seems ridiculous to me but it's happening and strangely it makes me laugh.

 

God I wish the doctors could actually find something wrong with me.

 

[Boris]

Unfortunately my frequent urination seems to be getting worse. It's always really bad around the same time 2ish till 8ish I produce a lot of urine with no changes of intake with average passing of 200-250ml every 30/40mins. That's with holding aswell, urge comes within 10mins of last toilet visit. Cannot live like this, 2 years of this. The sensation is horrendous.