Anticholinergic Drugs for bladder spasms

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I really hate to post this because I know it will be controversial. I have “lived with this” incontinence for over 25 years now and have sadly been a Guinea Pig for too many Drs. to count. Sadly more damage was done to my body & bladder in the early days (late 80’s)than even the Doctors knew. In addition having been hit on my Harley by an uninsured drunk, it has taken 30+ major surgeries to put me back together. I relocated South due to all the metal in my body, couldn’t stand the cold, hence a new medical team!
Well with the exception of one Doctor, they were mostly idiots with a predetermined course of treatment despite what I’ve already been through. Often attempt at cure is far worse than the disease. The point is they put me on Gabipentin to control the pain which resulted in Narcolepsy. After dinner one Sunday night last year I sat down to watch 60 minutes went into a narcoleptic sleep, and inhaled my entire dinner, essentially drowning in chicken curry. Had my wife not heard me I’d be dead. Now my lungs are severely damaged. And I believe I had a stroke as my memory was completely wiped. I started testing at a major hospital dementia unit only to find that all of the anticholinergic drugs have been found as a leading cause of dementia and Alzheimer’s.! I beg you to do your research in medical journals, all the BS on the web is paid for, and demand a consult with your Dr.! I’d rather be incontinent than in a care home where I don’t recognize my own wife, who’s specialty is working with Dementia/ Alzheimer’s patients and their families.
 
I am so sorry you had to go through this. Drugs do have side effects. Not all drugs are the same. Hope you are having a nice weekend.
 
Sprung87 and all: Yes, Googling brings up so much trash, it is impossible to figure out what is true. Avoid it! FaceBook is worse, probably. I deleted my FaceBook account a couple of years ago.

So, use "Google Science". You get there by Googling it in Google and probably lots of other search engines.
It leads you to the Scientific Journals and the Medical Trade Journals - as in, Nursing Journals, of which there is maybe 60-80, one for every specialty. Other medical professions. Organizations that do medical research. Avoid ones done by Big Pharma and others with a financial stake in their research, for the most part.

What you see is the "Abstracts" - a brief summary. Unfortunately, you have to pay to read an article and the prices are highway robbery, starting at $35@ and going to 3 digits. You would flinch at the prices of subscriptions to the original journals. Hospitals used to have libraries open to their patients, now they don't. Same for public libraries, in many cases. Cost prohibitive.
There is a free site. Once you have the name and author(s), you go to the free US Government website called PubMed. Some articles have a link to it. If (and note the "if") there was any government money in the study, the law requires it to be published on PubMed for free, but not until one year later. I, too, take Gabapentin, but not just for incontinence - and I'm gong to do some research, now, and question my neurologist who prescribed it.

Caveats: The authors pay $1,000 to get a study into the system, then the system charges and that money doesn't go back to the authors. I'll bet all studies don't get into the system, but probable not a high percentage. It is one of the ways a study gets "peer review". The abstracts usually list related studies, some of which may be just the author(s) of the next study just referencing the original study.
You read the Abstract. If you can't understand the language, the study will be equally incomprehensible. Skip it.
Not all Abstracts give an accurate and clear picture, so you learn to spot some of that as you use the site.
The site is Elsever - or something like that.
Lots of studies have no government money, so aren't required to be published on the Free "PubMed" site.
One work-around to the fees is a site by a Romanian woman who was incensed with the concept that vital human life information is concealed behind large fees. She stole millions and millions of the articles, publishes them on her own free website. I can't imagine the costs of the servers, but all she asks is a voluntary donation. People who had (the very expensive) subscriptions to the pay-to-read website gave her their password, even. The US courts can't touch her - they tried. Google/search for the NY Times article for her name - it may have been several years ago. Maybe the right general search engine Search Term will find it, too.
I haven't needed it in a couple of years, so seem to have lost the URL when I went to Firefox instead of Google.
I have two medical conditions. I have a subscription to Medifocus.com for a newsletter that informs me when a new study comes out on my conditions. That has an abstract of an abstract, and a link to the full abstract. Then you decide if and how you are going to read the study article.

Many thanks for alerting us, and stay safe.
 
I should have made it more prominent, but my wife worked in BIG Parma for many tears in Cardiology, Diabetes & now after losing my Mother & Grandmother and recently her 96 year old Grandmother who still managed a multi-million dollar real estate portfolio to Alzheimer’s & Dementia. Her Grandmother went in to have a kidney stone removed, she said the pain meds made her too foggy, it had to be removed. One of the meds turned her brain to Jello and she passed a week or so later. Granted this was an extreme reaction but when I told my docs the Gabipentin was causing me memory issues in addition to the Narcolepsy they upped the dose saying I was a lightweight and needed to breakthrough! They even sent me to a shrink to convince me that all the pain was in my head! I went to the dentist for some implant pre-surgery, again bad drug / wrong “MERSA” diagnosis & lost all of my perfect teeth over the last 16 months. I was in agony in the dental chair so the oral surgeon stopped within 10 minutes. By then I had no feeling on my right side. They thought I had a stroke & sent me directly to the ER. Turned out I had a tumor the size of two marbles crushing my spinal cord in my neck in 3 places. I was on the operating table for over 6 hours the next day, walked out a week later with 5 miniature titanium ceramic knee joints in my neck! They were close when they said it was all in my head, just a bit lower! Two weeks ago I was informed my entire medical team had been fired “FOR CAUSE”! In hopes they will never practice again. So we had free access for a long time to the real med journals, not the edited abstracts paid for by big pharma on Yahoo, Google etc.
 
That is one hard story. You & family seem to have experienced everything that's wrong with the medical industry, in this country, if you are talking about the US.
The abstracts are supposed to lead to the full article/study. At least, that's what the majority of the ones I've read in the last 10 years, or so, seemed to be doing. Didn't read tha many, i suppose. You obviously know more than i do - have experienced it.
I was part of a clinical study. I thought to go read about it 5 years later, found it and about 6 other articles/references. Seemed legit, if limited. How valuable is a study with only 87 patients not representing a full range of types/profiles/ages/races/etc?
Went to High School in late 50s early 60s, when they still taught the Scientific Method and made you do research & evaluation. College was not that rigorous, actually, until i left Forestry school and went with "general science".
Referring to Gabapentin: My Neurologist said it is one of the few drugs with no official upper limit. She used other language that i translated. As it was being used "off-label", i didn't find much other info and cut back on it. It made me suspicious. Do you remember where you found the connection to Narcolepsy, memory issues, dementia, Alzheimer’s? It seems to lesson my nerve pain from Peripheral Neuropathy & restless Leg Syndrome for me - definitely. I take it when i am prevented from sleeping, not every day.
I hadn't heard it being used for incontinence. As far as that is concerned, it didn't make a difference for me, i never noticed any correlation.
Far as I'm concerned, one of the prime symptoms that a doctor doesn't know and doesn't care is when he assigns you to a shrink. It's all in your head. Right. And the cancer (twice) was all in my head. (Well, the brain cancer was. The prostate wasn't.)
Lord knows, enough people on this forum have been told it is all in their head.
We all need to do our "due diligence".
 
If you have a “Good” Doctor, do your homework & write it all out and present it to them and request they pull the Journal/ study reports. In my case the Gabipentin was being used as a substitute. Anyone else here on this forum will understand we are the “BALL” being juggled between our Docs & the Political groups trying to make you a drug addict just because you need pain medication to live just a shadow of your former life. I am not a Doctor but “GET OFF THE ANTI-CHOLINERGICS!!!!!” If you want any mind/ memory/ life left. This data is out there but being buried and scraped from the internet as quickly as good doctors can post their research!
I also suffer from chronic pain after the accident: Broken neck/ shattered and cracked cervical (neck) vertebrae. 4 separate surgeries. Partially severed right arm at the shoulder/ destroyed rotator cuff 5 surgeries/ both clavicles fractured/ right wrist fractured & pinned/ lumbar spine 4 cracked vertebrae 5 damaged discs, spine torn loose at sacral joint 7 surgeries not counting the 5 botched attempts at install of pain stimulator stopped after huge infection at instal sight(skin turned to sponge like consistency was put in isolation and given all of the “MERSA DRUGS” before the tests came back negative (received a recorded message) because after they were prepping me for surgery to remove all of the metal rods, bolts, pins & screws that hold me together. I literally broke out of their isolation ICU when the surgical nurses stepped out of the room. I ripped out the many IV’s, cut the catheter to deflate it and drove 60 miles home in a hospital Johnny because they had burned all of my clothing. This was mid-January in Central Illinois (I had taken a position teaching finance after my accident) Nobody even called my house to see if I showed up!
3 weeks later I was in emergency surgery once again to remove the stimulator which apparently was shocking my heart sending me into cardiac arrhythmia! I’ll stop here, I think you get the point. You must be YOUR BEST ADVOCATE! Nobody else will!
Take good care,
Stay healthy!
 
Alas South,
I apologize for my rambling response, I thought anyone reading might not want to hear about my massive bleed at my broken pelvis, right hip fractures and 15 surgeries to rebuild by knees & legs! I must say I had great boots on that day, not one broken toe! Back to your point, don’t you love how things get so vague when you ask a very direct question! This is why doing my research, typing it out and giving the Doctor a copy while getting your pen ready to write down their answers is so important! You want answers & direct truthful answers even if they have to get back to you. This is another reason to call back and ask the nurse “ do you have answers to the questions we discussed”, very important do this nicely as I can’t tell you how many times a Doctor has thanked me and told me how much they appreciate my interest in taking care of myself! By the way: Gabipentin was developed as a failed muscle relaxer back in the 1930’s. Didn’t work so they brought it back for soldiers returning home from WWII with what we now call PTSD. THE SUICIDE RATE went sky high, so they cancelled it AGAIN! The scary part is they really don’t understand how it works, even after all of this they’ve brought it back again to replace opiate pain medication, suicide rates be DAMNED!
Be careful out there! And if you believe PRAY! PRAY FOR WISDOM!!!
 
Sprang87. Dang! You clarified, and darned good advice. You made me think about the time i did do something like that - a "critique" of parts of the recovery process that i wasn't told about or that was minimized by those stupid brochures. He didn't have much time, but i heard the nurses laughing and one came out to offer help. A little politeness goes a long way.
Okay, now we all need to apply your lessons. I'm glad to get the history of Gabipentin. You've given me the clues to research it better.
Nurses are easier to talk to - that's more emphasized in Nursing school and in their clinics, than doctors' schooling, and they aren't on such ridiculous time demands. The Government and the Insurance companies want them to spend 15 mins and move on to the next patient.
Stay safe. God Bless.
 
I had my first Botox injections a little over a month ago. They seem to help a good bit. Don’t have to take oxybutinin now so that’s great!
 
Thank you Phil,
The spasms aren’t as bad and I don’t need to take the oxybutinin for now so that’s a win win situation I think. Not perfect but better so far.

Hope you are safe and staying Covid-19 free.
🙂 hope everyone has. Nice Saturday despite the shelter at home situation gone on.
 
laalaauk & jrpoorman: I asked about botox over 2 years ago. The Urologist was unenthusiastic. My research seemed to pull up more unhappy with it than happy. One thing i noticed. For some, it seem to help for awhile, then stopped. It wasn't all negative, and some time has passed since i checked, so maybe there has been some change. Can the shots be repeated?

Sprung87. If your lungs have been damaged, you need to be even more careful about Covid19 - you probably know that, but we care.
I try not to post links, but this one is on lungs and Covid19, from the WaPost.
 
Well, sounds hopeful - like, you can get a next shot.
Our Governor (Alaska) just imposed a quarantine. It was worded so poorly, it makes it sound like we can't even go into town for groceries. How do they enforce that? There aren't enough cops to guard the doors at every grocery store! Most medical facilities are closed for anything routine, but have set up "hotlines." The word Routine seems to be variable. I hope our community, NAFC, can hang in there, can get incontinence supplies.
One of our granddaughter's friends was "shamed" by a in-person troll in the grocery story while she was buying food for her grandmother. The troll even took multiple photos - to post or just to threaten, i suppose. The Troll was there, too. "Never argue with ignorance. It doesn't bother him, and you end up with stupidity all over you." Not sure who said that, but it was awhile back (before Covid19).
In our rural area, we make one trip for several people, leave the groceries on the porch. If you run out of milk, the likelihood is that you'll survive.
Mail and UPS are still functioning. I imagine Amazon is busy, but having employee problems, i read.
Either the Washington Post or the NY Times had a good article on why not to overly fear package delivery - and what precautions to take. So we can still order from Northshore - assuming they are open.
Stay Safe!
 
I feel for you. This has definitely been a quick adjustment for everyone and the sudden spread of covid-19.
Just keep trying to help each other the best we can. Be safe and maintain a safe distances from other folks.
Together we will get through this. If you pray keep praying.
 
Yeah, these drugs are dangerous. After reading an article about them, I did some research on them and won't touch them.
 
Thank you Alas,
I relocated from Chicago, close enough to to see 2nd base of Wrigley Field from my home office, as well as a 100 acre farm in the country outside of Urbana-Champaign when I accepted adjunct-teaching position at University of Illinois after my “accident” if that’s what you call an unlicensed 4+ DUI Drunken illegal alien who blew a 3.6 on the breathalyzer. 08 is drunk in most if not all states, 3 beers in 1 hour, so something like 30+ beers, more likely 15 beers/15shots of Tequila over the morning as he crossed the centerline and hit me head on on my Harley at estimated 70+ mph, me doing around 30, so speed at impact of over 100mph. As I explained in earlier posts, in 1987 just after getting my MBA at UC San Diego, opening my 4th auto/sports/ racing shops & getting married, Driving my new Saab Convertible we picked up in Europe I was rear ended/ run over by an 80,000 pound gravel truck. After being cut out of my brand new car I realized once I woke up in the ICU I was completely incontinent both bowel and bladder. Anyone around my age might remember there were no disposable products of any value, just cotton diapers and plastic pants. I was so mortified I ended up selling all of my shops(My entire dreams from the time I was a kid)! Lucky for me my wife prior to that my girlfriend since I was 15, left me, couldn’t handle muscle man/ Martial Arts nut in a diaper... After wallowing in self pity and cutting myself off from everyone that meant anything to me, I figured out I better get some help. Life #2! I took a contract position with NASA working on the first GPS Prototype for cars through a good friend who was fully aware of my situation. This led to a job in Global Finance (Wall Street was heavily recruiting us numbers guys as NASA was getting positioned for major layoffs after the Challenger investigation was coming to completion and the continuation of the Shuttle Program was under question...
Took the offer & was sent to Chicago to learn at the Board of Trade and the Merch. I realized with my brokers license I could also sell/ broker real estate. Still intentionally single, hard enough going through the day & keeping business under control, I wasn’t getting into a risky relationship, that was just too much...One evening working late, I thought I was alone, grabbed my back pack and headed to the bathroom to change. About a second later the bathroom door opened, me standing there in a very wet diaper & plastic pants with a clean one in hand, and my cute, fun secretary staring back at me holding her own clean diaper??? WTH? THIS IS MY DISEASE!!! We spent the entire night talking, turned out she had never experienced control but had a wonderfully full life! She taught me more about living than any shrink could in a million years! We dated for about a year before I bought a furniture company and had to move out of Chicago, but she had let me out of my cell!
1997 rolls in, I’ve got 33 furniture stores going, was getting store number 34 ready to open, the Mayor is coming to cut the ribbon etc, etc. long story short, my Martial Arts had always been my physical balance since I was 8 years old, and you could wear just about anything under a Gi! To blow off pressure I went to the Dojo early arriving at the store about 10:am thinking the 5 semi’s of furniture would be unloaded and being stored or placed where the designers wanted it. Instead I arrive to 20 guys still hanging around drinking coffee. In my rage I grabbed a box containing a two hundred pound sofa frame. Heading to the basement I went down the first set of stairs only to go right through the landing. I was knocked unconscious, but was pinned into place by my neck & shoulders and once again those incredible firefighters saved my ass. They had to cut out the walls and the remainder of the stairwell to get me out, don’t remember any of it. Once again, Tom wakes up in the ICU, 3 days later. Again with tubes and wires, cables etc. I was in traction trying to stretch me back to 5’11! After 4 weeks in the hospital with a few more surgeries, Tom was back to rehab AGAIN! I was made an offer to go back into “JUST” finance, but it would require a bit of travel. I sold my furniture stores to a National Retailer and before I could blink I was doing business all around the world, minus Russia & China. I had offices in Chicago, New York, London, Dubai, Sydney & San Francisco and appearing on US TV shows on Wednesday & Friday.
This is how I met the love of my life, my incredible Wife. She has spent her career in medicine and as long as I continue to fight, she will continue to have my back. She is 100lbs of fight, I couldn’t have picked a better partner in life, she just happened to drop in by mistake, oh what a great mistake!
I have rambled on and probably shared more of my story that at any other time in my life, with for the most part; complete strangers. My hope is that although I have been through a lot (remember me mentioning giving any new Doc I give them a printed copy of my history in detail, it’s a book!). Part of my reasoning is this, for the first time in my life, I’ve never seen so many people with so many fears;Real & pounded into us by the media come together and offer so much of themselves in order to help others. In my own community here in Raleigh, NC, We have an app that everyone is logged onto just to keep track of who is doing what for whom, simply to keep from duplicating efforts as there appears to be far more volunteers than there are people in need. I’m sorry, but I can honestly say I’ve never seen anything like it.
And if by sharing some of my story it can give hope to just one person out there then I’ll be satisfied. See we humans have this odd thing called hope. And when I say that it’s with a caveat. After 1987, and what it took to claim my life back, I “knew” I’d never go through anything like that again!
Surprise! 1997 sneaks up and takes a bite out of my ass! Thank a God! I’ll never end up in the ICU again, let’s get living Tom!
2007, BAM! You’ll never walk again, you’ll never use your right arm again, the fecal incontinence is back after a 13 year hiatus, your beautiful Harleys are all being sold, your life savings is being spent and BTW you’ll be in a wheelchair the rest of your life...
No I refuse to listen to this and I swear to all of you “I WILL WALK OUT OF HERE”. It took me about a year of screaming agony, but trust me I’m no track star, but I hike two hours a day 5-6 days a week with my AMAZING partner in crime, a Siberian Red Husky named Blue. I go to physical therapy three days a week, and if I’m to tired because I never slept last night, then my beautiful wife is kicking me in the ass, reminding me of my promise to “MYSELF” and to her. My life couldn’t be better!, This is my best life, just make yourself a promise to live yours!
Stay healthy everybody, look forward to hearing from Y’all as we fight to get through this together! God Bless you all...
 
@jrpoorman Same here albeit I had mine last September. For me, they wore off quick. This might have been because they only gave me 100ui. I was pleased to come off the bladder tablet though. My consultant has agreed to give me the full 300ui next time and I have agreed to do this under local anaesthesia next time.

@AlasSouth, yes they can be repeated 6-12 monthly.
 
Thanks, laalaauk. Any noticable side effects? My doc is willing. Right now, my IC is pretty minor, but it has gone up and down, so I am willing to try Botox if it swings towards the high side, again.
My turn at Guinea Pig was cancer/chemo/clinical trial, 2003. Guess that worked, and i was treated better, i suspect, because it was a Clinical Trial with an entire team, and the hospital had really great cancer nurses. Those nurses could hit a vein with both eyes closed. That may have started my IC, but it was mild and tapered off - more or less.
I just hope we are all encouraging the newbees.
 
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