Boris: one hell of a journey

[Longroadhome]

On 7/28/2019 at 6:32 PM, Boris said:

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.

 

@Boris

how long did you taper the seroxat (Paxil) for in 2017 before you came off altogether ? 
I am tapering seroxat at the moment 

[Boris]

Hi

 

It was just over 2 years but I wasn't very consistent with my taper. Just do it very slowly 

[Boris]

After around 5 months the brain fog/fatigue are back the last few days. Seriously hope this is small blip as homeschooling and working from is going to be very hard with this.

[Longroadhome]

1 hour ago, Boris said:

Hi

 

It was just over 2 years but I wasn't very consistent with my taper. Just do it very slowly 

Thank you I will  

[Boris]

4 month off pregablin now and no problems from that so far (touch wood) Paxil withdrawal would always start around 2.5 to 3 month. It's nearly exactly 3 years since coming off Paxil/seroxat/Paroxetine.

 

Bladder seems to be having much better windows. I've even forgot about it for chunks of time. I think that will resolve itself eventually.

 

Brain fog and fatigue up and down but cutting my sugar/bread intake helps I think. I don't think this is linked to withdrawal but more overall my gut. I thought it was pregablin as it left last time when I was close to stopping.

 

Tinnitus comes on strong at times, I think this is something I will have to live with.

 

Pretty positive, I think I'm finally getting towards the point where I can see a success story in the distance. Been waiting 10years to say that. I think that's still a year away to be on the safe side.

 

Hope everybody is okay in lockdown.

[Gridley]

3 minutes ago, Boris said:

 

Pretty positive, I think

Great report, Boris.  Very happy for you.

[Sunnyday]

Hi Boris. Found your thread yesterday and can only say that I'm very sorry you had such consistent issues for so long. I had PGAD for a very short while during withdrawal (only for about a month) where I also felt more frequently like I had to urinate for whatever reason. So I can only imagine how rough it is to have it for that long, and I don't find it strange at all that you got anxious/depressed because of it. Very happy to read it's getting better.

 

Hopefully the brain fog will go away again soon as well, wishing the best for you.

[Boris]

Hey sunny, thankyou!

 

It's been pretty tough to get through and I hope I'm coming out the other side. I always remember thinking anything please but akathesia/terror/anxiety until the urinary system problems started. It's almost like akathesia of the genitals and bladder. It drove me just as insane for 2 years.

 

I just try to appreciate where I am now compared to the past and that seems to keep me going.

 

Hope you're well! Take care

[Erell]

Boris, how pleased I am to read such great news ! I know you hope for more progress, but reading your posts I can feel that you're on the right path !

 

Take care dear ❤️

 

[Boris]

On 4/13/2020 at 10:03 AM, Erell said:

Boris, how pleased I am to read such great news ! I know you hope for more progress, but reading your posts I can feel that you're on the right path !

 

Take care dear ❤️

 

 

Thank Erell!

 

Going through another wave of bladder/urinary weirdness. 

 

Out of all my symptoms the wave/windows lowering of this symptom is the slowest.

 

Very frustrating but looking forward.

 

I really hope if someone else has to go through this they can find my experience and progress.

[Sunnyday]

4 hours ago, Boris said:

 

Thank Erell!

 

Going through another wave of bladder/urinary weirdness. 

 

Out of all my symptoms the wave/windows lowering of this symptom is the slowest.

 

Very frustrating but looking forward.

 

I really hope if someone else has to go through this they can find my experience and progress.

 

Sorry to hear that Boris, feels very typical if/since it is a withdrawal symptom. The fact that the symptoms can come and go at random times for a long time. Luckily they seem to disappear completely eventually, but it can be a long wait.

 

I don't know what you've tried, but during my PGAD symptoms the things I found could help a tiny bit sometimes was loose fitting clothes, being aware of the position I sit in to not put pressure on the wrong areas, and not antagonise it in other ways if I could avoid it, like the wrong type of exercise and so on (for example swimming was fine while walking was not).  Some sort of ice pack could also make it feel less uncomfortable at times.

It's not the same issue of course, but since something seems ''upset'' in that region and almost overactive (?) in both cases I figured I'd share the stuff that helped me a little. Sometimes nothing helped though and it was just about getting through it.

 

Hope you're managing okay, take care.

[Boris]

1 hour ago, Sunnyday said:

 

Sorry to hear that Boris, feels very typical if/since it is a withdrawal symptom. The fact that the symptoms can come and go at random times for a long time. Luckily they seem to disappear completely eventually, but it can be a long wait.

 

I don't know what you've tried, but during my PGAD symptoms the things I found could help a tiny bit sometimes was loose fitting clothes, being aware of the position I sit in to not put pressure on the wrong areas, and not antagonise it in other ways if I could avoid it, like the wrong type of exercise and so on (for example swimming was fine while walking was not).  Some sort of ice pack could also make it feel less uncomfortable at times.

It's not the same issue of course, but since something seems ''upset'' in that region and almost overactive (?) in both cases I figured I'd share the stuff that helped me a little. Sometimes nothing helped though and it was just about getting through it.

 

Hope you're managing okay, take care.

 

Thank you for your suggestions. I think like everyone else the total lack of control over the randomness is upsetting and frustrating. The symptoms today I've not had in while so I see that as positive. Pulsing and pressure.

 

The word overactive definitely describes it all. 

 

I'm going to getting the hot water bottle and ice packs out!

 

Hope you're doing well! 

[Boris]

Hi

 

Unfortunately I've ended up with a gum infection and eventually got seen by a dentist today. Luckily it doesn't appear to my tooth and was cleaned in the gum but I've been prescribed anti biotics (Metronidazole).

 

I'm a bit nervous of taking this even though I made sure when the dentist was prescribing it that it wasn't a flulorquinolone as I aware of the issues surrounding that group.

 

I've just gone 2.5 years since my psych withdrawal ended so I don't want to go back to that. Bladder/urinary system symptoms still up and down.

 

Does anyone have experience with this anti biotic?

 

I'm going to hold off a few days to see if my gum improves after the cleaning but I don't dare Google.

 

 

[ChessieCat]

Here is SA's discussion topic:  cipro-levaquin-azithromycin-z-pack-and-other-antibiotics

 

It's good that you were aware of the fluoroquinolones.

 

When I have gum swelling I rinse my mouth with salt water about every hour or two throughout the day..  Just regular salt dissolved in warm water.  I make it as salty as I can tolerate.  Probably about 3 teaspoons in 1 cup water (250 ml or 10 oz).  You can tell if it is too salty.  When that happens add a little bit more water.  Don't rinse afterwards.

 

[Boris]

Great thanks, I should of searched to be honest!

 

I've been doing the salt but just short of a teaspoon 2-3 times a day. I might try more and every few hours like you have done over a few days to see if that improves.

 

Although my gum line has developed a small sinus that is draining the 'bad' contents haha!

 

Thanks Chessie

[ChessieCat]

You're very welcome.  It is worth trying it.  I hope it works.  I try to hold the salt water in my mouth for a while.  But if there are times you can't, just a rinse and spit is better than nothing.

 

You might also find that keeping to softer and mild food for a few days might help too.  Still clean your teeth but try not to brush that area too hard.  Try to avoid any extra trauma to the area.

 

Make sure that you rinse after eating anything and after brushing your teeth, especially before bed.  And if you get up during the night give your mouth a rinse than too.

 

I have even taken my salt water to work with me.

 

Edited May 26, 2020 by ChessieCat

[Boris]

Been doing the stronger and more often salt water rinses. Seems less red but the sinus still weeping and looks a bit bigger.

 

Will give it a few more days with cleaning before I decide to take the anti biotics.

 

Thanks again Chessie.

[Boris]

Small update:

 

I ended up taking the course of Metronidazole as my gum was getting worse. I didn't fancy taking the risk with a front tooth.

 

Luckily I've had no symptoms apart from upset stomach/fatigue from the antibiotics. I'd just got that in order as well but I guess confirmed infections are something that need treating.

 

Everything else is slowly getting better. I'm hoping by the end of the year I might be able to start worrying about life instead of this.

[Sunnyday]

Good to hear it went relatively well with the antibiotics @Boris. Hope you're still doing ok, it's a slow process. 

[Boris]

Hi

 

I think I would dare say I'm more or less past withdrawal and it's time to disconnect feelings/symptoms I get to Paroxetine use. I still have tinnitus and the mental legacy of going through the last 11 years. I'm 10 month off pregablin and no signs of issues so far.

 

Fatigue and brain fog come now and again but either coming off pregablin or following a diet after an intolerance test has reduced that.

 

I'm swinging to a different view of my so called bladder issues. I'm looking into more stress/anxiety/mind body related approach. After that final withdrawal and relationship breakdown in 2017 it almost seems like I got a stress related illness in my pelvis. I've been waiting a few month to see a physio who approaches it from this angle but I have seen some improvement changing my mindset. I also have a really bad past (childhood) so it could be linked to this and what brought me to anti depressants in the first place from another stress related illness. Ironically the paroxetine took me to a deeper hell than past trauma. Anyways no tests have found anything and no links to the meds so it's worth a shot and I'll see what happens. I'm really nervous to stop putting it down to Paroxetine affecting my urinary system but it's not getting me anywhere.

 

I'm close to writing that success story related to Paroxetine but much more work is to be done on myself with anxiety and my thought processes. I think that's where I need to draw the line on this now. In the midst of going through this experience I never thought I would be where I am now regardless of the bladder issues so I'm trying to be thankful for that.

 

I'll update my experience and work on the bladder and my now normal level of anxiety (for me) soon. 

 

Keep hanging on, it does get better eventually.

 

 

 

 

[Erell]

Thank you for this positive update.

And it sounds like you've grown so much in wisdom !

Thank you ❤

[Boris]

2 hours ago, Erell said:

Thank you for this positive update.

And it sounds like you've grown so much in wisdom !

Thank you ❤

 

No worries. Hope you are progressing!

 

Just so people know those 11 years were not solid withdrawal madness. I had many times where I was okay going through tapering but it was always in my mind. 

[DinaDina]

Hi Boris!

Thank you for your story. It gives me hope. I have the same problems with my bladder after stopping Zoloft. How are you now?

[Boris]

On 2/11/2021 at 10:35 AM, DinaDina said:

Hi Boris!

Thank you for your story. It gives me hope. I have the same problems with my bladder after stopping Zoloft. How are you now?

 

Hi Dina 

 

I actually posted on your thread before seeing this, I'm not getting notifications for some reason.

 

I'm fine for big chunks of times and mostly forget about this now. I never thought that would be possible. I have frequent urination at times but I just let it be and don't give it attention which seems to let it pass quickly.

 

I was still stuck in a anxious cycle with it after the whole experience. I think it's easy to keep some symptoms going with the nervous system and fear factor.

 

I honestly thought this was the end of me but it did eventually subside to a functional point where I can have some peace again.

 

I tried going on a date and that brought it on. Socialising and dating seem to be the last big hurdles with this but then again Covid has postponed those activities so I've got time to work on that.

 

Hang in there.

 

 

[Boris]

I'd been hanging onto all my old medications just in case. I ended up with a big bag full (mostly all out of date). I decided to drop it all at the chemist for disposal.

 

It felt like an end to a chapter not been on any medication and having none in the house. I think the chemist thought I was a bit odd with this large bag of meds and an emotional face ha.

 

Will be 4 years in about a month I stopped Paxil/seroxat. 14 months since Lyrica.

 

Touch wood I seem to be managing my fatigue/brain fog if I follow my food intolerance results. If I have dairy/eggs/yeast sometimes I will get hit by it majorly. I can finally focus on artwork for work and get tasks done. Although I have become addicted to coffee! I'll allow myself that one.

[Erell]

Haha, getting addicted to coffee is probably a good sign of healing !

 

Thank you again for sharing your updates, they give us a lot of hope.

I bet giving this big bag felt wonderful, that sounds like freedom

 

Congratulations, and thank you!

[DinaDina]

Boris I’m really happy to know that you’re better now. Your journey makes me hopeful. 

 

I really love this your phrase:

 

Quote

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

 

It’s exactly what I think.

[Boris]

On 2/19/2021 at 5:22 PM, DinaDina said:

Boris I’m really happy to know that you’re better now. Your journey makes me hopeful. 

 

I really love this your phrase:

 

 

It’s exactly what I think.

 

Yes at that point I thought I was starting to lose it. I was flicking between emotions pretty quickly!

 

I had to go into Manchester city centre today and of course it started plus every damn toilet is closed with Covid. It's almost like having dealt with this for so long it's become habit after the initial drug part. There is no way drug withdrawal now knows to switch on when I have to go do something in the city.

[DinaDina]

9 hours ago, Boris said:

I had to go into Manchester city centre today and of course it started plus every damn toilet is closed with Covid.

 

I hope it's only one day and you will be totally fine tomorrow.

[Boris]

Well I nearly managed 5 months of a window/without a flare but I woke up last week with my bladder firing off again. I'm trying to use my techniques to not add the anxiety/fear on top and let it do it's thing. 

 

I've been in such a good place with little stress so I can't put it down to that. The randomness with like everything else in this story makes you feel so powerless. 

 

The windows are now happening though thankfully. Last year started with a couple of week, then a month to 3 month then 5 month. It is very similar to the pattern of Akathisia I had.

 

I've got a taste for that final prize of normality.

[DinaDina]

@BorisI thought about you. Thank you for your update. I’m so sorry that you’re in wave now. I hope you will see a beautiful window soon.

[Erell]

9 hours ago, Boris said:

 

I've got a taste for that final prize of normality.

Yes, a 5 months window, that's wonderful ☀️

I hope and pray you'll get back there very soon !

Now you know your CNS can heal

[Boris]

Thankyou for the words of encouragement. Like with all of this all I can do is wait and be patient.

[Icip]

Hey @Boris,

 

Great to hear that you're feeling better! I think you'd fare worse in Leeds city centre as I'm not sure we even have any communal toilets! How have you been fairing with your design work? I got re-addicted to coffee again a few months ago, until I drank a little too much and managed to crash my system again! I have a French Press next to me at all times now. Issa nice feeling so I can image you appreciate that. Thank you also for the note you left about creativity on my thread a while back now, it reassured me a lot at the time, and still does now.

 

Icip.

[Boris]

On 3/18/2021 at 10:04 PM, Icip said:

Hey @Boris,

 

Great to hear that you're feeling better! I think you'd fare worse in Leeds city centre as I'm not sure we even have any communal toilets! How have you been fairing with your design work? I got re-addicted to coffee again a few months ago, until I drank a little too much and managed to crash my system again! I have a French Press next to me at all times now. Issa nice feeling so I can image you appreciate that. Thank you also for the note you left about creativity on my thread a while back now, it reassured me a lot at the time, and still does now.

 

Icip.

Hey

 

I'm originally from Leeds! I've been on an absolute roll with creativity since early January, I've started painting along side my 3d day job. I was thinking a few weeks back that I am nearly back to my mental state before taking meds. I would actually say my mind is better in ways after learning to deal with the reactions and withdrawal, it has made me grow even with how cruel it was.

 

My brain was so fried over the years and it is definitely making a comeback. Just need to get this pelvis/bladder to a comfortable state and I can take on more work.

 

I do love coffee, I can have quite a bit now with no reaction when my bladder is calm. Back in the day I would be shaking/agitation and getting feelings of doom from half a cup of weak coffee.

 

So yes it does get better. When I was laid screaming on the bathroom floor I never thought I would be able to function again.

 

Keep going

 

 

 

[arbor]

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

 

On 3/19/2021 at 7:26 PM, Boris said:

I've been on an absolute roll with creativity since early January, I've started painting along side my 3d day job. I was thinking a few weeks back that I am nearly back to my mental state before taking meds. I would actually say my mind is better in ways after learning to deal with the reactions and withdrawal, it has made me grow even with how cruel it was.

 

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 🎇✨🎈