HopeFloats Posted April 9, 2022 Share Posted April 9, 2022 Hi Boris, I am so sorry for everything you’re going through. I am in a bad flare with the constant urge to urinate, and burning at the bottom of either my bladder or pelvic muscles. I also get strange sensations similar to how carbonated bubbles feel in your mouth. Unfortunately, I also have trace amounts of blood in my urine so I am leaning towards an IC diagnosis. I also seem to ne food sensitive. The idea of ne we being able to have my favorite foods and drinks is heartbreaking to me. I have been crying my eyes out the past few days coming to terms with this possible diagnosis. As if going through W/D wasn’t enough, life had to throw this at us, too. Unbelievable. I am still in W/D and haven’t even completed my tapering so I know I still have the symptoms that go along with that to still deal with on top of the bladder nightmare. Since you have nothing wrong with your bladder, it seems to be nerve related, which seems like there is hope that your CNS will eventually calm down. Is there any chance there could be an infection? There is talk about embedded infections and biofilms - the bacteria does not show up on a standard urine culture. Some people have fixed their symptoms that way. I browse through the success stories on the IC Network and jotted down some medications/supplements that have helped others. I have not researched them or know whether there would be an issue with W/D and a sensitive nervous system. Here are some you may want to look into (if you haven’t already) Baking Soda - 1/4 tsp mixed w/water (not something that can be done long term but may take edge off) Oil of Oregano Bovine Colostrum Glucosamine Chondroitin Vesicare Elmiron Serrapeptase Interstim Implant Antihistamines Prelief - reduces acid when you eat and drink Thought you may want to look over that website and maybe the above options. If I come across anything else I will let you know. HopeFloats 1 Prozac: .20 mg (Aug 2020 - Current); .10 mg (July 2020); .20 mg (June 2020); 30 mg (May 2020); .40 mg (April 2020); .60 mg (March 2020); .80 mg (Feb 2020); 1.0 mg (Jan 2020); 1.25 mg (July 2019) Lamotrigine: 37.5 mg (Aug 29th 2020 - Current) 43.75 mg - (Aug 25th 2020) tried splitting the dose 1 tab in morning and 3/4 tab afternoon - reacted terribly to this 37.5 mg (Aug 7th 2020); 43.75 mg (July 2020) (too high dose for me); 31.25 mg (Dec 2019); 25 mg (Nov 2019); 12.5 mg (Oct 2019) starting point Amantadine 10 ml (Jan 2020 - Current); Claritin 10 mg (Nov 2019 - Current); L-Theanine 100 mg twice a day (Nov 2019 - Current); L-Arginine 1000 mg (Sept 2020 - Current); Magnesium Glycinate 400 mg (June 2021 - Current); Iron 25 mg Baclofen 25 mg (Nov 2019 - Current) for sleep ; Melatonin 2 mg time released + L-Theanine 100 mg (on as needed basis for sleep) Link to comment
Miko789 Posted May 7, 2022 Share Posted May 7, 2022 On 4/4/2022 at 10:37 PM, Boris said: 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. whats your experience with HTP? doesit have calming effect or activating, been taking for approximately 21 days together with lemon balm, chamomile, melatotin seen a slight difference 2011 protracted withdrawal symptoms from Effexor, managed to come off 2013-2015 risperidone consta 50 mg, started tapering from March 2015 to 1,66mg/day and from 02/2015 started seroxat 10mg/day 01/17 Seroxat 2,0mg,olanzapine 5mg,risperidone consta 25mg/every 15days 05/17 Seroxat 1mg,olanzapine 5mg,risp.consta 25mg/every 15days 06/17 Seroxat 2drops,olanzapine 5mg,liquid risperidone2mg 07/17 Seroxat 1 drop,olanzapine 5mg,Risperidone 0mg, 10/17 Seroxat 0mg,olanzapine,5mg,Risperidone 0mg, 12/17 Seroxat 1/2 drop, olanzapine 5mg, 04/18 Olanzapine 1,25mg, 04/18 xanax 0,5mg 24/06/2019 doc said to take 10mg olanzapine for 13days and down to 5mg been taking 10mg for 14 days, 5mg for 8 days and tapered to 3/4quart. 5mg for 14 days, 1/2 for 14 days, 01/08/19 2,5mg 08/2021 5mg olanzapine Supplements Omega 3, Turmeric, Bacopa monneri, Mucuna Pruriens Link to comment
Anya324 Posted July 13, 2022 Share Posted July 13, 2022 On 3/24/2022 at 3:46 AM, Boris said: They also routinely did anti biotics, I said no quinolonest to them before. I think it was Gentamicin. I’m so tired of trying to explain to professionals what drugs not to give me as I get so much push back @Boris, I do not see Gentamicin on the list of quinolones. Nearly all Quins end in “-oxacin” and none in “-micin”. Can you explain why this abx was upsetting? ~Lexapro 5mg 2009; ~increased to 10mg; 2013ish. ~increased to 20mg; 2017 ~January 2021 had an episode of Serotonin Syndrome (from one single 50mg dose of trazodone) reduced from 20mg to 10mg. ~Mid April 2021- Followed doctors taper schedule to get off lex. Within 6ish weeks I went from 10mg to 5mg and then 5mg every other day and then every 3 days and then quit. ~Early June 2021 stopped Lexapro ~July 5th; reinstated 2.5 mg Lexapro ~July 6th; started atenolol 12.5 2x day for heart palpitations (resting bpm 110). ~July 19th; upped to 3.75 ~Sept 12; Updose 5mg (want WD to go AWAY-no longer trying to get off Lexapro. Want my life back!) Lansoprazole 2000-2021 ~July 27th 2021 breaking capsules and removing 40 tiny beads ~Sept 2021- worked up to removing 300 of the 500 beads Link to comment
HopeFloats Posted August 29, 2022 Share Posted August 29, 2022 Hi Boris, Just checking in on you to see how your bladder is doing. I am still struggling with mine. HopeFloats Prozac: .20 mg (Aug 2020 - Current); .10 mg (July 2020); .20 mg (June 2020); 30 mg (May 2020); .40 mg (April 2020); .60 mg (March 2020); .80 mg (Feb 2020); 1.0 mg (Jan 2020); 1.25 mg (July 2019) Lamotrigine: 37.5 mg (Aug 29th 2020 - Current) 43.75 mg - (Aug 25th 2020) tried splitting the dose 1 tab in morning and 3/4 tab afternoon - reacted terribly to this 37.5 mg (Aug 7th 2020); 43.75 mg (July 2020) (too high dose for me); 31.25 mg (Dec 2019); 25 mg (Nov 2019); 12.5 mg (Oct 2019) starting point Amantadine 10 ml (Jan 2020 - Current); Claritin 10 mg (Nov 2019 - Current); L-Theanine 100 mg twice a day (Nov 2019 - Current); L-Arginine 1000 mg (Sept 2020 - Current); Magnesium Glycinate 400 mg (June 2021 - Current); Iron 25 mg Baclofen 25 mg (Nov 2019 - Current) for sleep ; Melatonin 2 mg time released + L-Theanine 100 mg (on as needed basis for sleep) Link to comment
peaceandlove Posted September 3, 2022 Share Posted September 3, 2022 On 8/19/2019 at 6:10 AM, Boris said: 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. hey, how are you feeling now? Has the frequent urinating stopped for you? April 2022- Only 1 celxa pill 10mg had an adverse reaction & never took anymore again Link to comment
peaceandlove Posted September 3, 2022 Share Posted September 3, 2022 On 8/28/2022 at 11:03 PM, HopeFloats said: Hi Boris, Just checking in on you to see how your bladder is doing. I am still struggling with mine. HopeFloats me too. What are your symptoms? April 2022- Only 1 celxa pill 10mg had an adverse reaction & never took anymore again Link to comment
peaceandlove Posted September 3, 2022 Share Posted September 3, 2022 On 8/28/2022 at 11:03 PM, HopeFloats said: Hi Boris, Just checking in on you to see how your bladder is doing. I am still struggling with mine. HopeFloats Did you end up having Interstitial cystitis? April 2022- Only 1 celxa pill 10mg had an adverse reaction & never took anymore again Link to comment
peaceandlove Posted December 19, 2022 Share Posted December 19, 2022 On 9/3/2022 at 2:07 AM, peaceandlove said: Did you end up having Interstitial cystitis? @HopeFloats April 2022- Only 1 celxa pill 10mg had an adverse reaction & never took anymore again Link to comment
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