Boris: one hell of a journey

[Boris]

On 4/19/2021 at 1:53 AM, arbor said:

Hi @Boris--I've just been catching up on your journey.  Then, wow, to come to this post:

 

 

I can't tell you how happy I am for you (and all of us).  You've really endured.  It's fantastic to hear that your creativity has returned.  Now I'm plugging for your pelvis/bladder problem to resolve soon--

 

Arbor 🎇✨🎈

 Thankyou Arbor.

 

Yes I am so pleased that a lot of that mental fog has cleared up, it sometimes flares but not too long. I still stick to my intolerance results as I'm not sure if it was that, pregablin or the legacy of my best friend Seroxat.

 

If I can just get past the urge to urinate I'll finally be free of this.

 

Hope you're well.

[HopeFloats]

Hi Boris,

 

I have not been active on this board in quite a while but plan on doing so again.

 

Like you, I have also developed the horrible urge for non stop urination.  I am not sure what to do. My doctor diagnosed me with IC based on my symptoms alone.

 

I never had bladder issues like this prior to reinstating Prozac so it is hard to believe that this is not tied to tapering and withdrawals. If the rest of our body is sensitized, then surely our bladders could be inflamed and sensitized as well. 

 

Is yours better now or the same level that it was previously? I am rooting for your recovery as I know how awful this symptom is.

 

Hope Floats

[Boris]

2 hours ago, HopeFloats said:

Hi Boris,

 

I have not been active on this board in quite a while but plan on doing so again.

 

Like you, I have also developed the horrible urge for non stop urination.  I am not sure what to do. My doctor diagnosed me with IC based on my symptoms alone.

 

I never had bladder issues like this prior to reinstating Prozac so it is hard to believe that this is not tied to tapering and withdrawals. If the rest of our body is sensitized, then surely our bladders could be inflamed and sensitized as well. 

 

Is yours better now or the same level that it was previously? I am rooting for your recovery as I know how awful this symptom is.

 

Hope Floats

 

Hi Hope

 

Even though it has been back 1.5 months it is not near the level I experienced in the first 2 years. It is very up and down then right and left with no pattern or obvious triggers. Like you said it truly is a horrible symptom and has changed my life, I say changed but I mean halted ha. It's a symptom that I think people see as a nuisance and that I shouldn't be preoccupied with, just get on with it to quote a friend.

 

But as negative as it feels there has been improvements and windows. I have no diagnosis and no explanation here in the UK. The main ideas I get from physio is simply pelvic floor dysfunction, oversensitived nervous system. So it does make some sense there from speaking to a physio regularly.  I sometimes just can't accept or get round my head round the urge or pressure or throbbing/pulsing, my bladder being full in 15mins when I haven't drank anything. These symptoms all change throughout the day and then just dissapear at times. 

 

I've felt like a mad man at times trying to get my point across to bored looking urologists.

 

I honestly thought anxiety from withdrawal was my nemesis especially with bouts of Akathisia. But Seroxat threw one more curve ball and here I am 3.5 years later since having the sensation to urinate again after going one day.

 

In this time I have learnt in ways to deal with it. If it stays within a certain level while flaring I can work and at least do some things to keep going while I wait for the next window. People around me know and I don't make excuses anymore or try to push through it. The only person I feel for is my son as I'm not always present in the moment when in a big flare.

 

So not all hope is lost and I await the next window which I hope will be longer than last time

 

That first year I nearly went every 5mins with tiny amounts unless I gritted my teeth and held. Now a majority of the time I'm okay for an hour or two with discomfort. So definitely improvements as I don't want people to read this I just see the negative parts I write!

 

I believe one day I'll be okay but I it in my case that it will be more patient waiting.

 

Boris 

 

 

[HopeFloats]

On 4/27/2021 at 2:21 PM, Boris said:

 

Hi Hope

 

Even though it has been back 1.5 months it is not near the level I experienced in the first 2 years. It is very up and down then right and left with no pattern or obvious triggers. Like you said it truly is a horrible symptom and has changed my life, I say changed but I mean halted ha. It's a symptom that I think people see as a nuisance and that I shouldn't be preoccupied with, just get on with it to quote a friend.

 

But as negative as it feels there has been improvements and windows. I have no diagnosis and no explanation here in the UK. The main ideas I get from physio is simply pelvic floor dysfunction, oversensitived nervous system. So it does make some sense there from speaking to a physio regularly.  I sometimes just can't accept or get round my head round the urge or pressure or throbbing/pulsing, my bladder being full in 15mins when I haven't drank anything. These symptoms all change throughout the day and then just dissapear at times. 

 

I've felt like a mad man at times trying to get my point across to bored looking urologists.

 

I honestly thought anxiety from withdrawal was my nemesis especially with bouts of Akathisia. But Seroxat threw one more curve ball and here I am 3.5 years later since having the sensation to urinate again after going one day.

 

In this time I have learnt in ways to deal with it. If it stays within a certain level while flaring I can work and at least do some things to keep going while I wait for the next window. People around me know and I don't make excuses anymore or try to push through it. The only person I feel for is my son as I'm not always present in the moment when in a big flare.

 

So not all hope is lost and I await the next window which I hope will be longer than last time

 

That first year I nearly went every 5mins with tiny amounts unless I gritted my teeth and held. Now a majority of the time I'm okay for an hour or two with discomfort. So definitely improvements as I don't want people to read this I just see the negative parts I write!

 

I believe one day I'll be okay but I it in my case that it will be more patient waiting.

 

Boris 

 

 

I am so glad that you are not experiencing it at the level you originally did.  You are a true warrior for enduring that level of discomfort for two years.  Thank goodness you have windows now where you can find some relief.

 

in my experience when this symptom is severe, it is not something you can just ignore and get on with it.  When it is severe, it becomes all you can think about.  With some symptoms, even severe ones, there may be a time of day where the symptom calms down a bit and you can find some sort of relief.  When this symptom is at its peak, it is just constant, 24/7 with no relief at all.

 

What coping strategies are you using to deal with it?

 

Are you following the IC Diet?  I realize you do not have IC but your symptoms are similar and the diet may help. There is a list of least bothersome foods and most bothersome foods to the bladder. I have started it myself and think it may be helping a bit.  According to the IC Network website, 94% of people following the diet experience some sort of improvement with their symptoms.  You may be unknowingly triggering chaos in the bladder with foods you are eating. I think apples could be triggering me. Just a thought.

 

I also noticed that you have another whopper of a symptom as I do - tinnitus. I hate that word so much. Don’t even like typing it, lol.

 

My doctor says that it will go away - it just takes a long, long time. It seems to be the last symptom to fade away.  From what I understand, our brains are in such chaos that the part of the brain responsible for editing the noise out is unable to do so right now.  It’s not really an ear thing but a brain thing.  Unless of course the T is caused by noise damage to the ear/cilia, that could be a different story.  
 

May your next window open soon and never close! 

[DinaDina]

 @Borishow are you? I often think about you and I hope that you're better.

[Boris]

On 6/19/2021 at 8:44 PM, DinaDina said:

 @Borishow are you? I often think about you and I hope that you're better.

 

Hi, it's been a bit up and down then settled again to different levels of frequent urination. As soon as I have anything planned it flares more which is definitely anxiety. It's definitely getting better though, it's been much more random than all the other recovery from Paroxetine. I'm confident I will recover it's just taken a long time probably due to me being on meds 10years.

 

 

 

 

[Boris]

On 4/29/2021 at 6:38 PM, HopeFloats said:

I am so glad that you are not experiencing it at the level you originally did.  You are a true warrior for enduring that level of discomfort for two years.  Thank goodness you have windows now where you can find some relief.

 

in my experience when this symptom is severe, it is not something you can just ignore and get on with it.  When it is severe, it becomes all you can think about.  With some symptoms, even severe ones, there may be a time of day where the symptom calms down a bit and you can find some sort of relief.  When this symptom is at its peak, it is just constant, 24/7 with no relief at all.

 

What coping strategies are you using to deal with it?

 

Are you following the IC Diet?  I realize you do not have IC but your symptoms are similar and the diet may help. There is a list of least bothersome foods and most bothersome foods to the bladder. I have started it myself and think it may be helping a bit.  According to the IC Network website, 94% of people following the diet experience some sort of improvement with their symptoms.  You may be unknowingly triggering chaos in the bladder with foods you are eating. I think apples could be triggering me. Just a thought.

 

I also noticed that you have another whopper of a symptom as I do - tinnitus. I hate that word so much. Don’t even like typing it, lol.

 

My doctor says that it will go away - it just takes a long, long time. It seems to be the last symptom to fade away.  From what I understand, our brains are in such chaos that the part of the brain responsible for editing the noise out is unable to do so right now.  It’s not really an ear thing but a brain thing.  Unless of course the T is caused by noise damage to the ear/cilia, that could be a different story.  
 

May your next window open soon and never close! 

Hi, so sorry for late reply.

 

My coping strategies were basically finding anything that could distract me for minutes at a time when it was relentlessly bad. I ended up playing an intense computer game online that would suck me in for 10 min games. At one point it was the only way I could keep going without smashing the house up or screaming. People would try to take take me out or socialise but I found it impossible as I just could not bare the symptoms or ignore them to talk.

 

I honestly thought it those first 2 years I was done and that was life for me. But it has improved so much. Last week I was at the pub twice, camping and themeparks with my son. So I'm hugely thankful for that. I did have flares within that but being able to sit at a pub and drink 4 pints without having to sit on the toilet every 2mins was like winning the lottery.

 

I tried cutting loads of trigger foods and drink at the beginning with no luck. Now I go out of my way to actually have what I want to stop being anxious about it (apart from my intolerances which solved fatigue). I found no correlation with what I drank/ate and the symptoms of the bladder. Sometimes I can have 4 coffees and be fine but yet just a glass of water I'll be in a mess, it's so random.

 

I have such empathy for anyone dealing with the bladder/pgad/pelvic pain. Not only are the symptoms torture but the lack of help or understanding in the medical field makes you feel even worse. Here in the UK they openly say they do not understand it or can not agree on what to call it. Thankfully I didn't listen to my first specialist who wanted to operate to make my bladder bigger. There is some nasty life changing issues there. 

 

Regarding tinnitus mine is like TV static. I use a rain app to block it out and sleep. After a while I stopped stressing about it and I rarely notice it now. But if I ever do get new noises or changes in my ears I freak out. It was something I feared before I got it, I saw it in a film once. So typically I got it 9 months later.

 

 

 

 

[HopeFloats]

On 6/25/2021 at 12:56 AM, Boris said:

Hi, so sorry for late reply.

 

My coping strategies were basically finding anything that could distract me for minutes at a time when it was relentlessly bad. I ended up playing an intense computer game online that would suck me in for 10 min games. At one point it was the only way I could keep going without smashing the house up or screaming. People would try to take take me out or socialise but I found it impossible as I just could not bare the symptoms or ignore them to talk.

 

I honestly thought it those first 2 years I was done and that was life for me. But it has improved so much. Last week I was at the pub twice, camping and themeparks with my son. So I'm hugely thankful for that. I did have flares within that but being able to sit at a pub and drink 4 pints without having to sit on the toilet every 2mins was like winning the lottery.

 

I tried cutting loads of trigger foods and drink at the beginning with no luck. Now I go out of my way to actually have what I want to stop being anxious about it (apart from my intolerances which solved fatigue). I found no correlation with what I drank/ate and the symptoms of the bladder. Sometimes I can have 4 coffees and be fine but yet just a glass of water I'll be in a mess, it's so random.

 

I have such empathy for anyone dealing with the bladder/pgad/pelvic pain. Not only are the symptoms torture but the lack of help or understanding in the medical field makes you feel even worse. Here in the UK they openly say they do not understand it or can not agree on what to call it. Thankfully I didn't listen to my first specialist who wanted to operate to make my bladder bigger. There is some nasty life changing issues there. 

 

Regarding tinnitus mine is like TV static. I use a rain app to block it out and sleep. After a while I stopped stressing about it and I rarely notice it now. But if I ever do get new noises or changes in my ears I freak out. It was something I feared before I got it, I saw it in a film once. So typically I got it 9 months later.

 

 

 

 

I am so glad that things have improved for you and that it is no longer like it was those first two years.  I feel for you as I am going through this now.

 

How is everything going for you right now? Has the symptom eased up?

 

Did you get the COVID vaccine? If so, did you notice that it caused a spike with your urgency/frequency to urinate or with your T?

[Boris]

On 7/16/2021 at 9:17 PM, HopeFloats said:

I am so glad that things have improved for you and that it is no longer like it was those first two years.  I feel for you as I am going through this now.

 

How is everything going for you right now? Has the symptom eased up?

 

Did you get the COVID vaccine? If so, did you notice that it caused a spike with your urgency/frequency to urinate or with your T?

 

Hey

 

Yes it feels like it will never end but its such a slow up and down process.

 

Currently I go from absolutely fine to needing to urinate a lot but I think that is coffee most of the time ha. I've found if I talk about it to people I know it can make it flare strangely in ways so I've not spoken about it to family or friends for a while. I feel there is a trauma/anxiety element left over now as well, it's very confusing. Not having sensations/pain etc but mostly just frequency at times, thank god as it's not possible to just ignore at that stage. So I decided to just be happy/grateful with that for now and not stress about it which seems to help loads. Trying to do bladder retraining and timing everything for me just made it much worse in those rough times.

 

I haven't had the covid vaccine as I am terrified of triggering anything off again for example akathisia/fatigue/Tinnitus and all the rest. I really need to decide on this as I know I'm risking issues from Covid as well so I just keep putting it off out of my head. Seems you can't win as my mum had issues with her T after getting covid but not with the vaccine but a friend at work developed T from the vaccine.

 

It would appear cutting dairy/yeast and eggs according to York intolerance test (UK) has solved my fatigue/brain fog. I recently over a 3 week period had dairty/egg/yeast and I had the worst week of fatigue/brain fog which seemed to resolve a few days of cutting it out again. I miss Halloumi so much I nearly cry haha. This issue was only made worse by medication and withdrawal as I had it before meds. I'd recommend anyone with those symptoms in general try a good reputable company for intolerance tests as I can actually function now.

 

Anyway I am rambling but in general it all has improved a lot.

[HopeFloats]

It sounds like you do not have the constant urge to urinate like you did before. Thank goodness.  Frequency is no fun either but if you at least get relief in between voiding then that is huge. 

 

I really need to figure out the COVID vaccine, too. The idea of getting it and having it trigger my T or my bladder or my hangover sickness is horrifying but getting COVID would be detrimental as well.

 

I am wondering if your friend who developed the T after getting the vaccine has a temporary case of it? Same worth your mom. Hopefully, their T will settle down after some time has passed.

 

Have you had to have any sort of procedures that involve sedation since  w/d?  I have to have a colonoscopy under sedation and that is worrying me. 

[HopeFloats]

Hey Boris,

 

Just checking in on you - not sure if you ended up getting the COVID vaccine or not but I wanted you to know that I finally took the plunge and got it.  Just had my 2nd dose a week ago and so far so good.  No increase in T or bladder issues.  In fact, I think it may have even helped my bladder a bit.  I know it sounds crazy but I did notice an improvement 2 - 3 days after the 2nd dose.   Hopefully, I am not jinxing myself by writing this.

 

HopeFloats

[Boris]

Hey 

 

I actually ended up getting covid from son and his end of school parties. It really knocked me out and I still can't smell properly but I was over the moon when I could smell a bit and taste again. Luckily I've not had any lasting affects so far but I was out of it for 4 weeks. I do intend to get the vaccine once I can now. Glad you've had no affects and fingers crossed it has actually helped!

 

 

 

 

 

 

 

 

[Boris]

Recovery wise I'm doing well. I took up running and got promoted at work. Focus is good if I stick to my intolerance diet. Pelvic symptoms flare occasionally but if I keep my cool I'm good. Still have high frequency at times but again if I don't panic and let it be it settles down again.

 

Tinnitus the same as expected.

 

I'm finally making plans and looking to the future after been in a holding pattern for 10 yearsish. I've started to realise how much this has cost me financially, career and relationships but I'm happy, I'm healthier and happier. You do start to have a post mortem so to speak on the situation though.

[Boris]

Quick question if anyone happens to look and knows.

 

Is Quercetin safe to use? I've noticed it mentioned alot regarding calming the bladder. I've seen it mentioned a few times on this forum for allergies. I'm just overly cautious with ever taken anything nowadays.

 

Thanks

[Erell]

1 hour ago, Boris said:

Quick question if anyone happens to look and knows.

 

Is Quercetin safe to use? I've noticed it mentioned alot regarding calming the bladder. I've seen it mentioned a few times on this forum for allergies. I'm just overly cautious with ever taken anything nowadays.

 

Thanks

 

Hello,

 

I'm afraid the answer would be that we can't predict how your body will react...

Damn, I would looove to have parallel universes to test supplements on another version of ourselves !

 

You might try a small dose and see how your body react.

Like you I've seen quercetin regularly mentioned in the histamine thread. (You might, perhaps, find testimonies there).

I did a quick research but don't think we have a specific thread on quercetin on SA.

 

How are you doing these days ?

 

Sending my best wishes ☀️

[Boris]

Hi Erell

 

Hope you're doing good. I've slowly slipped into a wave/flare or whatever it is. Not as bad but still holding me prisoner a bit.

 

Stuck on the frequent urination bit so did a bit of research and came across Quercetin. I've got nowhere with help or diagnosis on the urinating. It's pretty decent at times but in these flares it ramps up. Just want some pattern or level I can manage it and move on with life!

 

Was reaching out to see if there is any major red flags with Quercetin especially related to akathisia/fatigue etc. I'll try a small dose.

 

How are you getting on?

 

Thanks!

 

[HopeFloats]

Hi Boris,

 

I’m sorry to hear that your bladder is flaring.

 

I do not have any knowledge about Quercetin but my doctor recently recommended Fisetin - a flavonoid.  It is found in the skin of apples and strawberries but you would have to eat 3 lbs of strawberries in order to reap the benefits.  
 

My doctor is taking it himself and recommending it to all his patients. He says it has anti inflammatory properties and gets rid of senescent cells in our bodies which can be harmful and contribute to certain diseases. His explanation sounded a lot better than mine, LOL.

 

Inflammation is undoubtedly something we are dealing with in W/D so there may be something to it.
 

Through my research I also found Marshmallow Root tea/capsules and Desert Harvest Aloe Vera capsules are calming for the bladder. I bought some myself but have not tried them yet.

 

There is an expert on IC and Pelvic Floor Dysfunction named Nicole Cozean. Although, you may not have true IC, she may be a good resource for you. You can google and find her videos on line. She also does Zoom consultations which I did as well.  It may be worth speaking with her about your situation - she may have suggestions for you as she is an expert on the bladder.

 

Do you practice any breathing techniques or Pilates? My PT really pushes the exercises and deep breathing. I know that is not a quick fix but more of a new habit to incorporate into your daily life.

 

As crazy as it sounds, my bladder improved after I received the 2nd dose of the vaccine. I can tell my bladder is still not right but there is a definite improvement. 
 

I was scared to death that the vaccine was going to trigger a wave and, luckily for me, it seemed to help with a couple symptoms I was having.

Hope you feel total relief from your bladder discomfort. I can’t wait until you update us that your bladder is finally healed (which I know it will be). 

 

HopeFloats

[Boris]

1 hour ago, HopeFloats said:

Hi Boris,

 

I’m sorry to hear that your bladder is flaring.

 

I do not have any knowledge about Quercetin but my doctor recently recommended Fisetin - a flavonoid.  It is found in the skin of apples and strawberries but you would have to eat 3 lbs of strawberries in order to reap the benefits.  
 

My doctor is taking it himself and recommending it to all his patients. He says it has anti inflammatory properties and gets rid of senescent cells in our bodies which can be harmful and contribute to certain diseases. His explanation sounded a lot better than mine, LOL.

 

Inflammation is undoubtedly something we are dealing with in W/D so there may be something to it.
 

Through my research I also found Marshmallow Root tea/capsules and Desert Harvest Aloe Vera capsules are calming for the bladder. I bought some myself but have not tried them yet.

 

There is an expert on IC and Pelvic Floor Dysfunction named Nicole Cozean. Although, you may not have true IC, she may be a good resource for you. You can google and find her videos on line. She also does Zoom consultations which I did as well.  It may be worth speaking with her about your situation - she may have suggestions for you as she is an expert on the bladder.

 

Do you practice any breathing techniques or Pilates? My PT really pushes the exercises and deep breathing. I know that is not a quick fix but more of a new habit to incorporate into your daily life.

 

As crazy as it sounds, my bladder improved after I received the 2nd dose of the vaccine. I can tell my bladder is still not right but there is a definite improvement. 
 

I was scared to death that the vaccine was going to trigger a wave and, luckily for me, it seemed to help with a couple symptoms I was having.

Hope you feel total relief from your bladder discomfort. I can’t wait until you update us that your bladder is finally healed (which I know it will be). 

 

HopeFloats

 

Hi Hope

 

How are you?

 

Oh thank you so much for all the information. I also read about Aloe Vera. I need to go get some teas to try today so I'll grab some and the marshmallow as well.

 

The Fisetin sounds similar to Quercetin in description. 

 

I'll look into Nicole. I've been having zoom consultations with a physio but we have figured out that the pain is secondary to my stress around frequent urination and thankfully all the strange sensations which have mostly gone now. I've not got much answers on my bladder so it would be nice to see if someone else could help.

 

Strange how the vaccine has appeared to help your bladder but good news.

 

Thankyou again!

[Boris]

Strangely enough I just googled Nicole and that's where I learnt about Quercetin.

[HopeFloats]

Oh wow! Interesting.if Nicole recommends it then I would say it is worth trying as long as it does not trigger other W/D symptoms.

 

I have heard hat not all Aloe Vera is created equally. I really would suggest ordering the Desert Harvest brand.

 

I don’t think the brand matters on the Marshmallow Root tea or capsules. I bought mine from Whole Foods.

[DinaDina]

 Boris how is your wave? I hope you're getting well after a flare. I always think about you

[Boris]

On 12/16/2021 at 12:33 PM, DinaDina said:

 Boris how is your wave? I hope you're getting well after a flare. I always think about you

Hi!

 

How are you?

 

so sorry, I didn’t see my notification for your post.

 

Luckily my wave of bad urinary symptoms lasted around a month then went back to mild frequency. 
 

Unfortunately I was hit by some strange wave of depression, extreme tiredness, rubber band feeling round my head, very bizarre symptoms which felt similar to the few weeks after covid. This was mid November till January. It recently came back for a few days last week. My strange sense of smell from covid also intensifies (most bad smells smell like rotting onions) glad it’s just bad smells. Anyways probably some form of long covid.

 

Then mid January my urinary symptoms started again. Usual pattern. Go to toilet then instantly need it again then moves into pain, burning, throbbing. That calms and now I’m stuck with ridiculous frequency where I can’t function.

 

I’m thankful for windows with nearly no symptoms but I’m so frustrated by the constant up and down to the point where I feel like I’m stuck in some Groundhog Day situation now. I’ve been dealing with some form of withdrawal symptoms since my first adverse reaction in 2009. I’m tired and feel like my soul is been chipped away. I need to sell this house and escape my horrible neighbours into a detached house, switch jobs and commit to a relationship. All of which feels impossible when all I can feel is the urge to urinate! Even when it’s very minimal I feel traumatised about it to an extent I’m extremely nervous about normal life.

 

Like everyone else I crave some kind of normality where I can be reliable. Hopefully one day I will find some kind of peace.

[Boris]

I’ve seen a fair few of the Lyrica FB group join and mention urinary issues from Lyrica.

 

I got off Lyrica with no problem December 2019 after 6 years and my first windows started in March so I’m wondering if that was the culprit to the strange urinary issues. My gp even recognised that it might be the issue and suggested coming off. Fingers crossed it continues to improve.

 

[Alan1234]

On 2/13/2022 at 11:48 PM, Boris said:

I’ve seen a fair few of the Lyrica FB group join and mention urinary issues from Lyrica.

 

I got off Lyrica with no problem December 2019 after 6 years and my first windows started in March so I’m wondering if that was the culprit to the strange urinary issues. My gp even recognised that it might be the issue and suggested coming off. Fingers crossed it continues to improve.

 

@Boris I’m really sorry to read your story about what you have gone through. Some of it is so similar to mine. 
I have messaged you because I suffer all the exact urination symptoms as you. It started on Venlafaxine 5yrs ago. Eventually I was sent to a urologist who did all the tests. Eventually after a camera and pressure tests he says my baldder has shrunk and he doesn’t have any answers for the cause but suspects it’s the Venlafaxine as he has had similar patients but not as severely affected. I go 24/26x a day. I can’t sleep for more than 2hrs at night as I wake up if I can sleep at all with the pain of having to go even though I’ve drank nothing for hours. I’ve lost my job and have to wear a bag to leave the house and have developed a kidney stone. 
 

I have taken another opinion on treatment and been offered a bladder stretching/hydrodilation and Botox  it both require general anaesthetics. 

I didn’t know anything about tapering and withdrawal and was advised by GP to come off Venlafaxine over 4wks so then I was in withdrawal but it wasn’t recognised for months then I’ve been put on 12different meds and each one has given me more symptoms. Obviously I now Know it as protracted withdrawal after finding this site. 
 

my worse symptom is easily this bladder it’s like physical torture, I think I could get a part time job and learn to ignore or work through the others but this bladder is impossible. The symptoms cycle this never remits but sometimes I get down to 15/16 times a day at best.

 

i was given betmiga, solphencin amd oxybutim  but they didn’t help or made me sick. 
 

can I ask how your bladder is and what treatment or medications you have tried or are on ?

 

are you able to work and how do you manage it ?

 

any help or Hope would be greatly appreciated 

 

thank you for taking the time to read this 

[Boris]

Hi Alan

 

Sorry to hear you are going through a similar situation in ways.

 

Yes you described exactly how I feel about this situation, torture. I find I cannot ignore it when it is screaming at me to go, it's so intense that I forgot in those first 2 years what it feels like to naturally needing to go to the toilet. So many strange symptoms in the whole region. At times the bladder would feel like it couldn't expand and want anything in it out.

 

For me it was constant for 2 years but I managed to sleep most nights. Then it started to break up where I had near normal bladder function apart from some frequency. Then it comes back and even though it isn't as strong as those first 2 years I struggle mentally to handle it anymore. My life has been on hold a long long time, this and akathisia have drove me to feel suicidal at times. Once the akathisia went this came a couple of weeks later and it all most feels like akathisia but in the bladder.

 

I'm currently on sick, my 3rd long term sick period in 4 years of this bladder issue. With covid I'm now work from permanently which has helped but this time the stress got to me and I needed a break. When it flares I feel I can't be around people or do anything but try to hang on. I usually do personal artwork to feel like I have some progress.

 

Managing those first 2 years I gritted my teeth, hot water bottles, ice packs, baths, endless tv series, pacing. Now it goes up and down within the flare so it's a bit easier.

 

I tried all the usual urinary medications after carefully checking them. Professionals have no clue what is up with me. My second camera they did say a small bladder but nothing has been mentioned since, treatment has been fragmented. I'm due a more indepth camera under general so I will get more info on bladder size. I tested negative for all other tests including urodynamics and overactive bladder.  Urodynamics showed I can actually hold around 600ml so it's very confusing. I've always gone to the toilet a lot but I just want to go back to that before this insanity. I've been told Chronic pelvic pain disorder and it's based around muscle tensions. I can stretch and relax the pain away but I have 0 control over the frequency, it does what it wants. I can be fine one minute then go to the toilet and it fires off. Sometimes I drink nothing but yet I'm urinating lots of clear liquid every 15mins.

 

The positive part is that its seems to have all lowered in intensity over the 4 years. Like I said it now goes up and down within a flare. I'm not sure how long you have had this symptom.

 

It has cost me a lot this bladder symptom more than the other withdrawal issues. Relationships, career opportunities, stuck in a house with horrible neighbors that I need to sell, time with my son, my confidence. I need to be grateful my job are understanding and flexible I've been there since 2009 when I had my first adverse reaction.

 

My GP wants me to try methocarbamol (Robaxin) to see if it relaxes my pelvic region and rule that out. Then there is another for the smooth muscles but I'm scared of taking anything.

 

It's hard to explain to people so I just avoid people apart from close understanding friends and family.

 

No doctors or consultants have had any real opinion on this being caused by psych meds. My GP did suspect Pregablin being the cause, I did get windows once I was off that.

 

I hope one day I get some stability with it or it gets to a point where I can tolerate it and move on with my life, I'm so tired of it all like I'm sure you are.

 

All the best.

 

 

[Alan1234]

46 minutes ago, Boris said:

Hi Alan

 

Sorry to hear you are going through a similar situation in ways.

 

Yes you described exactly how I feel about this situation, torture. I find I cannot ignore it when it is screaming at me to go, it's so intense that I forgot in those first 2 years what it feels like to naturally needing to go to the toilet. So many strange symptoms in the whole region. At times the bladder would feel like it couldn't expand and want anything in it out.

 

For me it was constant for 2 years but I managed to sleep most nights. Then it started to break up where I had near normal bladder function apart from some frequency. Then it comes back and even though it isn't as strong as those first 2 years I struggle mentally to handle it anymore. My life has been on hold a long long time, this and akathisia have drove me to feel suicidal at times. Once the akathisia went this came a couple of weeks later and it all most feels like akathisia but in the bladder.

 

I'm currently on sick, my 3rd long term sick period in 4 years of this bladder issue. With covid I'm now work from permanently which has helped but this time the stress got to me and I needed a break. When it flares I feel I can't be around people or do anything but try to hang on. I usually do personal artwork to feel like I have some progress.

 

Managing those first 2 years I gritted my teeth, hot water bottles, ice packs, baths, endless tv series, pacing. Now it goes up and down within the flare so it's a bit easier.

 

I tried all the usual urinary medications after carefully checking them. Professionals have no clue what is up with me. My second camera they did say a small bladder but nothing has been mentioned since, treatment has been fragmented. I'm due a more indepth camera under general so I will get more info on bladder size. I tested negative for all other tests including urodynamics and overactive bladder.  Urodynamics showed I can actually hold around 600ml so it's very confusing. I've always gone to the toilet a lot but I just want to go back to that before this insanity. I've been told Chronic pelvic pain disorder and it's based around muscle tensions. I can stretch and relax the pain away but I have 0 control over the frequency, it does what it wants. I can be fine one minute then go to the toilet and it fires off. Sometimes I drink nothing but yet I'm urinating lots of clear liquid every 15mins.

 

The positive part is that its seems to have all lowered in intensity over the 4 years. Like I said it now goes up and down within a flare. I'm not sure how long you have had this symptom.

 

It has cost me a lot this bladder symptom more than the other withdrawal issues. Relationships, career opportunities, stuck in a house with horrible neighbors that I need to sell, time with my son, my confidence. I need to be grateful my job are understanding and flexible I've been there since 2009 when I had my first adverse reaction.

 

My GP wants me to try methocarbamol (Robaxin) to see if it relaxes my pelvic region and rule that out. Then there is another for the smooth muscles but I'm scared of taking anything.

 

It's hard to explain to people so I just avoid people apart from close understanding friends and family.

 

No doctors or consultants have had any real opinion on this being caused by psych meds. My GP did suspect Pregablin being the cause, I did get windows once I was off that.

 

I hope one day I get some stability with it or it gets to a point where I can tolerate it and move on with my life, I'm so tired of it all like I'm sure you are.

 

All the best.

 

 

@ boris 

 

Hi Boris 

mine started gradually from 2017. It was 12/15x then but more urgency problems. Since 2020 it’s 20+ times a day. I don’t understand how I have to go at night, it’s the constant pains, so small volumes come out that relives the pain. I have Akathisia also that’s been awful, I’ve only had that for 8mths but it’s got progressively worse, even when I’m exhausted if I’ve only had 3hrs sleep the bladder pain/urination and the nerve/restless legs make it impossible to lie down anyway. I too have lost a very successful career. I lost my wife and family and house. I currently live with my elderly mother. 
unfortunately I didn’t know and believe these drugs could do it. I’ve already had it coming upto 5yrs and I dread to think about the future. I’m not fully off these poisonous drugs. 
The worse thing is I can’t even go for a walk longer than 15mins unless I drive out to the country (with my bottle in my car) or even ride my bike as always having to find somewhere to go. I can’t even take my daughter shopping anymore unless I wear a bag and then I’ve had accidents which is not only traumatic for me but her also.

 

I live near Manchester in the UK. If you ever want to chat or anything more let me know. Take care and thank you for your reply 

[Boris]

Hi Alan

 

Sorry for the late reply, I've been totally out of it with sinusitis.

 

Really sorry to hear about the difficulties and losses you have and are suffering, a lot of us have a similar story. I try to be thankful for having my son and accept what I can. Most of the time I'm just stressed out with the bladder. Strangely with the pain of the sinusitis I've not had any real issues with my bladder and been passing large amount at good intervals. There is definitely some psychological element to this for me but it's hard to figure out. Flares can come from nowhere when I'm doing well and progressing so I think it's a mixture.

 

I live just outside Manchester as well. Give me a message if you want.

 

Chris

[Alan1234]

On 2/20/2022 at 11:56 AM, Boris said:

Hi Alan

 

Sorry for the late reply, I've been totally out of it with sinusitis.

 

Really sorry to hear about the difficulties and losses you have and are suffering, a lot of us have a similar story. I try to be thankful for having my son and accept what I can. Most of the time I'm just stressed out with the bladder. Strangely with the pain of the sinusitis I've not had any real issues with my bladder and been passing large amount at good intervals. There is definitely some psychological element to this for me but it's hard to figure out. Flares can come from nowhere when I'm doing well and progressing so I think it's a mixture.

 

I live just outside Manchester as well. Give me a message if you want.

 

Chris

@Boris

Hi Chris 

 

thank you so much for your reply. 
how many years have you suffered with your bladder and how long before  you got any periods is relief from it? What is your typical daily frequency now and compared to when it was at its worst? 
Did you ever see a urologist for it and have any treatment or take any drugs? I know you mentioned the GP wanting you to try methocarbinmol. 

How do you cope when you go out with your son? Are you able to exercise and go for walks with it?

 

My anxiety definitely affects my but now I’m going every 15/20 mins and now I have bladder pain. This is the worse it’s ever been and now i go between 25/35x a day. There doesn’t seem to be any relief from it and it has got significantly worse over the last 16mths. The consultant says he wants me to try Amtriptaline which is an Anti depressant but I can’t risk that as they’ve all made it worse. The next stage is a general anaesthetic and having my bladder stretched while I’m asleep. I’m concerned about the GA tbh as I’m in some crazy withdrawal still. 
 

apologies for all the questions, I hope you don’t mind answering them. Obviously if you prefer to answer them privately please I would be grateful just private message me.

 

thanks again 

 

[Boris]

On 3/1/2022 at 4:34 PM, Alan1234 said:

@Boris

Hi Chris 

 

thank you so much for your reply. 
how many years have you suffered with your bladder and how long before  you got any periods is relief from it? What is your typical daily frequency now and compared to when it was at its worst? 
Did you ever see a urologist for it and have any treatment or take any drugs? I know you mentioned the GP wanting you to try methocarbinmol. 

How do you cope when you go out with your son? Are you able to exercise and go for walks with it?

 

My anxiety definitely affects my but now I’m going every 15/20 mins and now I have bladder pain. This is the worse it’s ever been and now i go between 25/35x a day. There doesn’t seem to be any relief from it and it has got significantly worse over the last 16mths. The consultant says he wants me to try Amtriptaline which is an Anti depressant but I can’t risk that as they’ve all made it worse. The next stage is a general anaesthetic and having my bladder stretched while I’m asleep. I’m concerned about the GA tbh as I’m in some crazy withdrawal still. 
 

apologies for all the questions, I hope you don’t mind answering them. Obviously if you prefer to answer them privately please I would be grateful just private message me.

 

thanks again 

 

Hey

 

Sorry been offline with a really bad flare.

 

4 years I’ve had this, first 2 being constant while I was awake and then when I got off Pregablin I started getting breaks in between flares, one break was nearly 5 month. A break I still had mild frequent urination , every 2hrsish but the urge was gentle and increasing with time. Not the sudden intense and sometimes painful urge.

 

At my worst the urge was constant with pressure so I could of sat on the toilet all day. I would hold to every 15mins or so. I tried bladder training to 2hrs for months which was torture with no improvement. Now I can hold to 2hrs but I’m so sick and tired of the feeling of needing to pee I find it harder mentally. Rarely get pain and not as much pressure. I just can’t deal with it mentally anymore and tired of losing my life to it.

 

I tried a few overactive bladder meds. Tamsulosin which just gave me retrograde ejaculation. None helped at all apart from side effects.

 

I’ve had nhs physio and nerve tens treatment that did nothing. Seen a private physio with internal examination,  No signs of any hypertonic internal muscles. The muscle pain in my opinion comes from the stress of having to pee so much and feel the odd sensations. Stretches sorted that out. Consultant at stepping hill Stockport was absolutely terrible. I have a new one now and I’m booked in for bigger camera under general anaesthetic. I’m also worried about ga due to the meds. I’ve had my gp write to them with my reactions and will speak to them before. If I don’t do it and jump through the nhs hoops I won’t get anywhere. I need diagnosis for my insurance with work as I don’t think I can carry on working if this keeps flaring as in so tired.

 

With my son I gritted my teeth through  the worst of it and he knows I’m ill with it. Luckily he is understanding but I feel I’m letting him down not going on holidays and doing social stuff.  That hurts emotionally.

 

You have my understanding as this is probably nearly as bad as my akathisia I had and worse in some ways for me. It has nearly ruined my life, I think I’m the max of trying to hold things together.

 

Nothing I’ve done it taken has helped. The only improvement and pattern was coming off pregablin and getting my first window. I’ve been in this flare around 7 weeks now and the last 3 days I’ve spent laid on the floor with a crawling feeling in my bladder area or genitals (it moves). I’ve been wanting to go every 20mins but keeping it to an hour.

 

I do seem to have more urine in there now, rarely pain, less strange sensations etc. Less of everything but the frequency so it has improved, I’m just done with it tbh and if I had an option to check out of life without it being you know what I would of probably chosen it. It’s exhausting and I find it scrambles my thoughts while taking enjoyment out of life.

 

Also having to constantly explain it to people and why I can’t do things drains me. Friends still act like I’ve just got over it and should just get on with life. Drives me nuts. 

To me it feels like a sensory issue with nerves. Specially with all tests so far being negative and no professional having any explanation. 
 

Really sorry you are going through this Alan. I believe it will heal itself eventually but god is it slow and taking its time. Some days I feel I’m back at the beginning.

 

Sorry for typos, hate typing on the phone.

[HopeFloats]

Hi Boris -

I am sorry to hear you are in a bad flare.  Unless it was just a coincidence after I received the vaccine I noticed a significant improvement with my urgency for about three months. 
 

Unfortunately, I developed a blood clot in December and everything has gone downhill since and I am in a bad flare myself.  I think it was partially due to my needing to start taking a blood thinner.

 

I had previously mentioned the PT Nicole Cozean and I am taking a week off from work and going to see one of her PT’s that train under her the first week of April.  I know it’s expensive but I’m desperate for anything that may help. I will fill you in when I get back. 
 

There is also this doctor in Chico, CA, who specializes in treating women with this problem but he may have ideas for treating men, too.  It may be worth paying for a phone consultation.  I can look up his name if you’d like.  
 

I just started taking Desert Harvest Aloe Vera and will see if that helps. I know, for women, sometimes topical estrogen helps which I am going to try as well.

 

I am so looking forward to the day when you announce this horrid symptom is gone. In a weird way, it will be a triumph for me, too, if that makes any sense.  
 

It’s truly a nightmare and it doesn’t seem to be a very common one so it is hard to find people who have gone through this already.  
 

May I ask all the bladder meds you tried that did not work?  I read that taking baking soda (don’t have the exact amount off hand) mixed with water can provide relief but it is not safe to take long term.  I’m tempted to try that though. 

 

I just don’t understand how the nerves down there are getting switched on without the ability to switch off.  
 

Hope Floats 

[Alan1234]

On 3/3/2022 at 10:37 PM, Boris said:

Hey

 

Sorry been offline with a really bad flare.

 

4 years I’ve had this, first 2 being constant while I was awake and then when I got off Pregablin I started getting breaks in between flares, one break was nearly 5 month. A break I still had mild frequent urination , every 2hrsish but the urge was gentle and increasing with time. Not the sudden intense and sometimes painful urge.

 

At my worst the urge was constant with pressure so I could of sat on the toilet all day. I would hold to every 15mins or so. I tried bladder training to 2hrs for months which was torture with no improvement. Now I can hold to 2hrs but I’m so sick and tired of the feeling of needing to pee I find it harder mentally. Rarely get pain and not as much pressure. I just can’t deal with it mentally anymore and tired of losing my life to it.

 

I tried a few overactive bladder meds. Tamsulosin which just gave me retrograde ejaculation. None helped at all apart from side effects.

 

I’ve had nhs physio and nerve tens treatment that did nothing. Seen a private physio with internal examination,  No signs of any hypertonic internal muscles. The muscle pain in my opinion comes from the stress of having to pee so much and feel the odd sensations. Stretches sorted that out. Consultant at stepping hill Stockport was absolutely terrible. I have a new one now and I’m booked in for bigger camera under general anaesthetic. I’m also worried about ga due to the meds. I’ve had my gp write to them with my reactions and will speak to them before. If I don’t do it and jump through the nhs hoops I won’t get anywhere. I need diagnosis for my insurance with work as I don’t think I can carry on working if this keeps flaring as in so tired.

 

With my son I gritted my teeth through  the worst of it and he knows I’m ill with it. Luckily he is understanding but I feel I’m letting him down not going on holidays and doing social stuff.  That hurts emotionally.

 

You have my understanding as this is probably nearly as bad as my akathisia I had and worse in some ways for me. It has nearly ruined my life, I think I’m the max of trying to hold things together.

 

Nothing I’ve done it taken has helped. The only improvement and pattern was coming off pregablin and getting my first window. I’ve been in this flare around 7 weeks now and the last 3 days I’ve spent laid on the floor with a crawling feeling in my bladder area or genitals (it moves). I’ve been wanting to go every 20mins but keeping it to an hour.

 

I do seem to have more urine in there now, rarely pain, less strange sensations etc. Less of everything but the frequency so it has improved, I’m just done with it tbh and if I had an option to check out of life without it being you know what I would of probably chosen it. It’s exhausting and I find it scrambles my thoughts while taking enjoyment out of life.

 

Also having to constantly explain it to people and why I can’t do things drains me. Friends still act like I’ve just got over it and should just get on with life. Drives me nuts. 

To me it feels like a sensory issue with nerves. Specially with all tests so far being negative and no professional having any explanation. 
 

Really sorry you are going through this Alan. I believe it will heal itself eventually but god is it slow and taking its time. Some days I feel I’m back at the beginning.

 

Sorry for typos, hate typing on the phone.

@Boris hey thanks for the reply 

your experience sounds so much like mine. Your line it’s exhausting and scrambles your thoughts while taking enjoyment out of life totally sums it up. 
i think your possibly in a better place than me in the fact you’ve had windows and been on less psych drugs then me. 
 

I’ve realised my GP was prescribing me one instant Release tablet a day of a drug with a short half life that is supposed to be prescribed twice a day. No wonder I was getting insomnia, anxiety and started with this . He never spotted it then I had to come off. It cold Turkey under urologist orders 3yrs later 

[Boris]

On 3/4/2022 at 10:40 PM, HopeFloats said:

Hi Boris -

I am sorry to hear you are in a bad flare.  Unless it was just a coincidence after I received the vaccine I noticed a significant improvement with my urgency for about three months. 
 

Unfortunately, I developed a blood clot in December and everything has gone downhill since and I am in a bad flare myself.  I think it was partially due to my needing to start taking a blood thinner.

 

I had previously mentioned the PT Nicole Cozean and I am taking a week off from work and going to see one of her PT’s that train under her the first week of April.  I know it’s expensive but I’m desperate for anything that may help. I will fill you in when I get back. 
 

There is also this doctor in Chico, CA, who specializes in treating women with this problem but he may have ideas for treating men, too.  It may be worth paying for a phone consultation.  I can look up his name if you’d like.  
 

I just started taking Desert Harvest Aloe Vera and will see if that helps. I know, for women, sometimes topical estrogen helps which I am going to try as well.

 

I am so looking forward to the day when you announce this horrid symptom is gone. In a weird way, it will be a triumph for me, too, if that makes any sense.  
 

It’s truly a nightmare and it doesn’t seem to be a very common one so it is hard to find people who have gone through this already.  
 

May I ask all the bladder meds you tried that did not work?  I read that taking baking soda (don’t have the exact amount off hand) mixed with water can provide relief but it is not safe to take long term.  I’m tempted to try that though. 

 

I just don’t understand how the nerves down there are getting switched on without the ability to switch off.  
 

Hope Floats 

Sorry for the late reply and sorry to hear you are suffering again.

 

I’ve been off work for 2 months with this flare now. Originally it wasn’t too bad but needed a break mentally and then around the time I had to take amoxicillin for a root canal issue it got a lot worse. Not sure if it is related. This is the longest flare I’ve had in 2 years so a bit worried.

I had a rigid cystoscopy and hydro distension which stretches the bladder to fully investigate it under epidural. Quite a bizarre experience but I remember them saying while I was a bit out of it that my bladder appeared fine and stretched to the whole 1 litre. So I’ve ruled out all the evil stuff but I will probably still get a diagnosis of painful bladder syndrome even though pain isn’t my issue but urinary symptoms. Basically means they don’t know what is wrong with me. They did mention the bladder distillation or something which they use for IC. I’m willing to try anything to help this condition as long as it’s not psychotropic drugs. It really has taken my life away just when I thought I was free.

 

I see a pelvic floor specialist here over zoom in the uk so I’ll have to fully commit to the stretches, relaxation now nothing can be found.

 

Please let us know about the aloe Vera as I’ve heard about that before.

 

Meds I tried with no help whatsoever for frequency, urge:

 

Mirabegron

Solifenacin

Tolterodine

Methocarbomol 

I think that’s all of them. I’ve been offered anti depressants a couple of times and gabapentin but refused quickly.

 

 

[HopeFloats]

Hi Boris -

 

There is a doctor I am contemplating going to see who specializes in IC and he uses installations in his patients with a 92% success rate. I believe the combination is Elmiron, Lidocaine and Sodium Bicarbonate but I can’t remember exactly.  There are other combinations of drugs to use as well but his success rate seems promising.

 

Elmiron is not something I would consider taking orally but apparently taking it via installation there are no side effects. 
 

So it is promising that there may be something to help us while we wait for our nervous systems to completely heal.

 

I never had bladder issues prior to a acute withdrawal so it seems logical that this will go away one day. Did you ever have bladder issues prior to withdrawals? 
 

How was the cystoscopy? Have you ever had one without sedation? My Urologist wants me to get one without anything for pain.  I am worried it will be too painful and aggravate my bladder especially since I am in a flare right now.

 

I need to start taking the Aloe Vera regularly (which I haven’t been doing) but as soon as I do I will let you know.  
 

One of my physical therapists said that she had a patient with bladder issues and once he went off his psych meds, his problem went away.  So I look to that situation as hope for you and me. 
 

Hope Floats 

[Miko789]

On 3/4/2022 at 12:37 AM, Boris said:

Hey

 

Sorry been offline with a really bad flare.

 

 

 

With my son I gritted my teeth through  the worst of it and he knows I’m ill with it. Luckily he is understanding but I feel I’m letting him down not going on holidays and doing social stuff.  That hurts emotionally.

 

Y

 

Nothing I’ve done it taken has helped. The only improvement and pattern was coming off pregablin and getting my first window. I’ve been in this flare around 7 weeks now and the last 3 days I’ve spent laid on the floor with a crawling feeling in my bladder area or genitals (it moves). I’ve been wanting to go every 20mins but keeping it to an hour.

 

I do seem to have more urine in there now, rarely pain, less strange sensations etc. Less of everything but the frequency so it has improved, I’m just done with it tbh and if I had an option to check out of life without it being you know what I would of p

 

Also having to constantly explain it to people and why I can’t do things drains me. Friends still act like I’ve just got over it and should just get on with life. Drives me nuts. 

 

 

 

guess that its from stress that you have to go to pee.

 

 

when wake up i have the urge to wake up from pressure from urine, drink too much water day and night,.  and wake up sometimes i bumped my head from urge to pee.

 

dealing with acute wd, from zyprexa,

 

 

hopefully my sleep will get better , melatonin didnt do much, and have waiting for HTP 5 to arrive to fix it, finger crossed

[Boris]

On 3/29/2022 at 11:30 PM, HopeFloats said:

Hi Boris -

 

There is a doctor I am contemplating going to see who specializes in IC and he uses installations in his patients with a 92% success rate. I believe the combination is Elmiron, Lidocaine and Sodium Bicarbonate but I can’t remember exactly.  There are other combinations of drugs to use as well but his success rate seems promising.

 

Elmiron is not something I would consider taking orally but apparently taking it via installation there are no side effects. 
 

So it is promising that there may be something to help us while we wait for our nervous systems to completely heal.

 

I never had bladder issues prior to a acute withdrawal so it seems logical that this will go away one day. Did you ever have bladder issues prior to withdrawals? 
 

How was the cystoscopy? Have you ever had one without sedation? My Urologist wants me to get one without anything for pain.  I am worried it will be too painful and aggravate my bladder especially since I am in a flare right now.

 

I need to start taking the Aloe Vera regularly (which I haven’t been doing) but as soon as I do I will let you know.  
 

One of my physical therapists said that she had a patient with bladder issues and once he went off his psych meds, his problem went away.  So I look to that situation as hope for you and me. 
 

Hope Floats 

 

Hi Hope floats

 

I've had normal cystoscopy twice with no meds and was a bit uncomfortable but not too bad.

 

Rigid cystoscopy was fine to be honest, I had an epidural instead of general anesthetic. I did take a sedative to relax me as I never had an issue with them so risked it. Bladder was fine and was blown up to 1 litre. They have said bladder instillation next but I'm totally unconvinced it will do anything as I have no lesions or damage to the bladder wall after the camera. I'm not sure what they use in the NHS for the instillation. They did say painful bladder syndrome as they don't know what it is. It really is hopeless to get to that point with the medical point and they are saying that.

 

Please let me know about the Aloe vera. I'm trying Quercetin and IC diet plus stretches but no relief yet. It goes up and down in intensity as it wants. Urge to urinate and pressure/strange sensations. It is constantly changing and confusing.

 

Unfortunately I'm 5 years off paroxetine and over 2 years pregablin so I'm not that hopeful at the moment! But I will try.

 

No problems before psych medication with the bladder.

 

I had a really bad childhood, few years of normal life, meds, withdrawal and now the bladder problem. I don't feel like I've really had a chance to be me. It's an absolute smack in the face to be left with this, I was so close to getting where I wanted to be and felt lucky to have finely got past the akathesia plus the rest of it.

 

I did go see an Osteopath as my friend was convinced it was muscular so recommended someone. I didn't tell him about the drugs at first but then to my suprise he knew all about akathisia and Paroxetine withdrawal. He said in his opinion it's caused by the meds, neurogenic bladder. I didn't dare ask if it will get better as no one knows that. Hopefully I will get more information on my next visit.

[Boris]

On 4/2/2022 at 4:51 PM, Miko789 said:

 

 

guess that its from stress that you have to go to pee.

 

 

when wake up i have the urge to wake up from pressure from urine, drink too much water day and night,.  and wake up sometimes i bumped my head from urge to pee.

 

dealing with acute wd, from zyprexa,

 

 

hopefully my sleep will get better , melatonin didnt do much, and have waiting for HTP 5 to arrive to fix it, finger crossed

 

Be careful with the 5-HTP, it's not something I would take.

 

Unfortunately I deal with the pressure and urge 24/7 when it flares up. I can sleep luckily enough, sometimes up once in the night.