Problem with Urinary Catheter, and Bladder-spasms while on amphetamines

KEDASO · 03-29-2009, 12:38 PM

Good morning, everyone,
I have a neurogenic bladder, thus have a urinary catheter. I have had it for about 1 1/2 years now. And now have two problems:
I have had the hardest time with the damn thing.
If I was bedridden, I wouldn't be having that many problems. But I am not--I am still able to walk small distances, and have my electric wheelchair for long distances or on bad days. The extent of my walking, is from my bedroom, to my garage, (which is converted into where my office is).
When I first got the catheter, I was having painful bladder spasms, (from what I was told by my Urologist, if the bladder is empty and a spasm happens, that's what makes it painful). So, was told to drink more liquids, (of which I never was a good drinker of fluids, and now even less so with chance of choking or coughing on it), and was first put on a drug to help stop the bladder spasms, Enablex. After a couple of months, after it wasn't doing a great job, I was put on Detrol LA. After a few weeks, it seemed to mellow out the bladder spasms. Still was getting occasional UTI's, but was told that people with catheters usually do get UTI's. BUT, I was always under the impression, that once you are on a catheter, you wouldn't have to think of incontinence anymore.
Silly me--the leakage is a problem, especially when a spasm happens, and it could be a gusher. I tried having the size of the catheter increased--no help. And I tried putting a bandage at the tip of the penis, but that cause a bad infection at the tip, which end result was a larger opening now at the end of the penis.
DOES ANYONE HAVE ANY SUGGESTIONS IN HELPING STOP THE LEAKAGE? I find it very messy, and on occasion, very embarrassing when it happens in public, and you end up with wet pants. I have also now sleep with underwear and pajama bottoms, since I had wet the bed a few times, and now the underwear and pajamas can absorb the leakage. Though, I find the leakage less when lying in bed, which is why I mentioned that if I was bed-ridden, I don't think the problem would be as bad. While up, and in my own house, I just keep the regular catheter bag on, and when I go out in public, I use the leg bag under my pants. By the way, they changed the type of catheter to a teflon tube, which is supposed to cut down on UTI's, so that the bacteria doesn't stick to the tube.
---
Now we get to problem number TWO...
Because I am getting weaker, I have been sleeping twice per day. I get up in the morning, and can only make it to about 1pm, then must go to bed for sleep, wake up around 7pm, then go back to sleep around 10-11pm, then back up at 5am.
So, my neuro sent me to a neuro specialist who deals with sleep problems, with my own neuro having thoughts of trying meds to keep me awake during the day. So, first they did a test to make sure I didn't have Obstructive Sleep Apnea, which I don't. I have very shallow breathing now around the clock, and not just at night, so it is because I am getting weaker. So, she wanted to experiment with meds to try to keep me awake during the day. I first tried Provigil for two weeks, which didn't help, even with increased dosages. So--on to amphetamines... I am now on Methylphenidate. And I am supposed experiment with different dosages. I first started with 5mg--no help. I am now on 10mg, twice in the early, then later morning, which is having a little help. Next I will be trying 15mg, which I think will do the trick...ah--but a bad side effect has happened. The nasty bladder spasms have returned with a vengeance, so that now the VERY painful bladder spasms are happening about 3 or 4 every hour, though when in bed and my body is more relaxed, it only occasionally happens.
So, I have a very good pharmacist, and spoke to him about it. He is aware of my disease, and understands what the doctors are trying to do. He definitely said the Meth. could bring back the bladder spasms. When I asked him if I could increase the dose of the Detrol LA, he said no, that Detrol LA was made at one dose only, and only allowed to take it once daily. He suggested to try a plain amphetamine, (which I don't know one from the other), with one that came to his mind of Adderall or Adderall XR, or a new one out called Vyvanase. I also asked him if it was possible then, to have TWO anti-bladder spasm drugs, since I was on Enablex before, that what if I took both the Detrol LA AND the Enablex. He said he only had one customer on two, and didn't know the results with him. So, I first tried reaching my Urologist, and Friday was his day off, (this has all just happened within the past two weeks). So, I called the neuro sleep specialist, and detailed her with what the pharmacist said. She understands the problem, and said she would speak directly to the pharmacist on this, which she did, as the pharmacist told me that both of them would be investigating the use of a possible other amphetamine that might not have, or be lesser on the spasms. Meanwhile, on Monday, I will try my Urologist again--I like the guy, but he has a tough nurse that will many times answer the question herself, and not let you speak to the doctor. If that is the case, I have an appointment with my primary care doctor on Wednesday, who I have been keeping in the loop of what has been going on. He himself, told me to try taking the drugs at different times of the day, but that didn't help. I will suggest to him, to see if I can take both the Detrol LA AND the Enablex or other similar drug, to see if he can speak directly to my Urologist on this.
I wouldn't be bringing all this up, but the bladder spasms are VERY, VERY painful when they happen. I immediately stop what I am doing, clench my fists, grit my teeth, and try to bear down while the spasm happens, which lasts about two minutes. And I get them 3-4 per hour while I am up.
HAS ANYONE ELSE HERE BEEN FACED WITH THIS PROBLEM?
HAS ANYONE ELSE HERE HAD THEIR DOCTORS ATTEMPT AMPHETAMINES TO DEAL WITH THE GREAT FATIGUE?
HAS ANYONE ELSE HERE BEEN FACED WITH THE BLADDER SPASMS, AND WHAT THEY DID FOR IT?
IT IS TWO DIFFERENT PROBLEMS, WHERE A SIDE-EFFECT OF THE PILL FOR ONE PROBLEM EFFECTING THE OTHER PROBLEM--ANYONE ELSE BEEN FACED WITH THAT?
Please--if anyone has been in this situation-please let me know what was done, THANKS.
KEDASO
(Ken)

BethU · 03-29-2009, 01:09 PM

Ken ... What a terrible situation. I hope you and your doctors find a solution fast.

I can't share about bladder spasms, but I can share about amphetamines. I took them many years ago ("diet pills" and recreation), and got really hooked. Hopefully whatever is on the market today is not as harsh as the ones in the 1970s, but my first reaction is to stay away from them. They will certainly keep you awake, but may produce a nervous kind of "energy" that will disturb your sleep more than it is already.

I'm no doctor and your own doctor is the authority on this, but I'd say be careful and talk to your doctor about the ramifications. It sounds like you have productive awake time in the morning and the evening. Your body may just need the extra rest in the afternoon to battle your condition.

Good luck.

KEDASO · 03-29-2009, 01:38 PM

Hi BethU,
I, too, "played" back in the 70's...
But now I am going by what the doc's say. I like my neuro alot--he is the head of Neurology at the local hospital. It was his suggestion on this, to try to beat the great fatigue. And it kind of made sense to me...why not try it. I take it when I first get up, then in the late morning, though the script called for 3 times a day, which did NOT make sense to me, since why would I want to take speed in the late afternoon, when I would be going to sleep later.
But, I think it's worth a try to fight the great fatigue. And it seems both neuros., (my own neuro and the neuro sleep specialist), want to try it on me.
And one laugh on this--drugs that I "played with" back in the 70's, are now LEGALLY prescribed for me now: I am on the pill for of marijuana, (THC), now have the amphetamines, and have Vicodin as well. LOL-who knew I would actually be taking them LEGALLY...LOL.
KEDASO
(Ken)

BethU · 03-29-2009, 04:08 PM

lol. Same here. When I was (briefly) dx with myasthenia gravis, the MG organization sent me a wallet card saying "I am not intoxicated. I have MG." And I thought, "where were you when I needed you?"

Sounds like you and your docs know what you're doing.

Good luck!

Al · 03-29-2009, 05:23 PM

Hi Ken, in your first post you say you have shallow breathing and fatigue. They are classic signs of needing a Bipap. I can't believe your doc would suggest speed before trying you on a Bipap. Actually I can believe it. He didn't have Anna Nicole as a patient did he?

AL.

brooksea · 03-29-2009, 05:34 PM

Ken,

Can't off any advice on the bladder problem.

My husband takes Methyl. It does help him if he needs to have some energy, but he pays for it the next several days!

joelc · 03-29-2009, 05:44 PM

Have you tried a condom catheter? Many people use these with great success and this would bypass the problems you have been having. Also, I agree with Al concerning the bipap. I used to have the same problem with being tired, even when I was using a bipap, and had to go back to bed every afternoon for a few hours. Since getting my trache and vent I no longer have to take naps every day. My fatigue was because I was having to work too hard to breathe.

KEDASO · 03-30-2009, 01:50 PM

But I am on the bi-pap.
That is why the docs are attempting this.
---
Still haven't seen any answers to this yet--is anyone on a catheter here?
And with some of the problems I am running into?
KEDASO

Al · 03-30-2009, 03:09 PM

OK so we've blown my theory out of the water. I've used the condom catheter with limited success but not the type you're using. No ideas on the spasms but I do know some meds can react with others.

AL.

Patsy · 03-30-2009, 04:27 PM

Ask your doctor about trying Elavil. Try also putting a a few cc's less water in in the catheter balloon.

KEDASO · 03-30-2009, 07:59 PM

I have "given birth" to two balloons--one that was fully inflated, and one that was half-inflated. Thank God I cannot "feel ANYTHING down there", (lol), as the CIDP affected the whole area there. Yes, the catheters were pulled on accidently, and came out.
The good side of that--when they were pulled accidently, they were pulled 3/4 of the way into the urethra. When that happened, the leaking STOPPED. But, just with normal moving around, they eventually just came out.
Unfortunately, Al, there were two purposes the doctor had a catheter put in--neurogenic bladder, in that the bladder was not emptying, thus causing UTI's, and the other reason was the incontinence. So, I can't use a condom cath., as it wouldn't empty the bladder.
KEDASO
(Ken)

Al · 03-31-2009, 01:25 AM

Sorry to hear you're having a bad time of it all.

AL.

susanL.52 · 06-22-2009, 11:28 AM

I had a similar problem like KEDASO. I felt ill and had problems with staying awake and so I didn't know what to do. First, I also took Provigil and it worked quite good for me, at least I didn't feel as tired and down as before. I think you have to find the medication that is good for you, not everyone reacts in the same way to a certain treatment. Today, I don't take any pills anymore and I think my body is back in balance.

Patsy · 06-23-2009, 03:53 PM

KEDASO,
Oh my goodness, you have a big problem! Meaning managing your bladder.
Your Urologist should repeat a Video urodynamics study of your bladder now with the spasms and determine the treatment plan accordingly.
From my experience in urology/neurogenic bladders in my old nursing career, if you have a weak bladder neck and sphincter (no stricture) and no DSD (detrusor sphincter dysernegia), I feel that you should have a condom catheter, just my opinion!
Patsy

karin · 06-26-2009, 03:43 PM

Hi,

it sounds like the catheter is not draining the bladder properly.
- I assume you make sure the cath is not bent/kinked?
- how far is it in the bladder? Any chance it's in too far? What's your procedure for inserting it?

Some ?:
- how much leakage during spasm...a cup, a Tbsp?
- any leaks without pain?
- does the bag fill before spasm?
- what kind of neuro bladder...over or underactive detrusor? overactive sphincter I assume?
- how many mg detrol?
- is urine clear/cloudy, light/dark?
- what size cath, how many ml to inflate?
- how often is cath changed?
- when changing it, is there resistance?..any prostate problem?

Karin