At my wit's end

Great.

But *I* get my leg cramps AT NIGHT when I wake up 5 to 7 times to pee.

It seems likely to me that the excessive peeing causes an electrolye imbalance due to dehydration which causes the cramps.

But if I drink more water in the middle of the night, I'll have to get up to pee even more often.

Kind of a Catch-22 doncha think?

Here's something my wife and i learned about leg cramps from "The People's Pharmacy" in NPR.  Keep packets of mustard at your bedside.  If you have cramps, open and consume a packet or two (couple of teaspoons).  It works, but don't know why.   Maybe trying the mustard at bedtime would prevent cramps... no harm trying.

I had to take omeprazole twice a day for a vocal cord granuloma.  That led to heart palpatations, and that sent me to a cardiologist.  I had already discovered the magnesium depetition issue, and started taking the suppliment, so my heart was back to normal by then.  The cardiologist picked up on my nocturia and sent me to a urologist.  The urologist said if I didn't have TURP, bad things would happen.  So I had TURP (actually greenlight laser) and I've been totally incontinent ever since (March 10 of last year).  So bad things happened any way, and I'm still awakened several times at night.

Mustard packet... Good trick. It has 65mg of sodium and some potassium from its turmeric. Both are good at relieving cramps. Hank

Thanks

:-(

+1

Is it actual leg cramps or restless leg syndrome (which I have at times)? I get up and walk around which seems to help.  

If it's restless leg syndrome, that can be a symtom of iron deficiency.

Cramps. Quite painful cramps.

Seems better if I drink plenty of water during the day but none at night.

Also seems better when my nocturia symptoms are at bay and i only wake up once or twice to pee.

If it's bad and I'm waking up every 1.5 hours tlo pee, the leg cramps are more likely to occur.

Hi alan1951

Thanks for contributing.

But I get the feeling that you may not have read and/or understood either my original post or my subsequent posts in this thread.

I've been on Cialis 5mg (off and on) for at least 3, probably 4, years now.

I added the Avodart about 2 years ago now.

The point of my original post was that these drugs may not  have been doing anything positive for me regarding my frequent urination symptoms because my symptoms are as bad now as they were when I started on these drugs.

At various times while I was taking these meds I often thought that my symptoms were getting better, at least marginally, but now I'm questioning even that.

[E.g. When I first went on Cialis (w/o the Avodart), roughly 4 years now, my symptoms were instantly much better and stayed pretty good for several months.

But then they came back as bad as ever for an extended period.

I think I went off of it for a while at that time and may have stayed off until I decided to give the Avodart a good long shot, which was about 2 years ago.

The Cialis, at the very least, was a great way to side-step the sexual side effects of the Avodart.

So I've been on Cialis + Avodart for around 2 years now.]

If they *were* helping, then the help they were giving was erratic at best.

I'm also questioning the diagnosis of BPH itself since I had a cystoscopy about 1.3 years ago, when I was begging my urologist for a TURP or some other surgical intervention, and was told that I am not a candidate for surgery because there is nothing wrong with me.

I.e. I flunked (or passed depending on how you look at it) my cystoscopy.

It's at that point, around 1.3 years ago now, that I probably should have tried going off of these meds rather than waiting until about 2 weeks ago  when I decided to start this little experiment.

Over that 1.3 year period I have tried various OAB meds (along with the Cialis + Avodart) but I realize now that they were never supposed to be able to give me near immediate relief, which is what I thought for some reason, but that I'd have to stay on them for a at least a month to see results.

What follows isn't for you as much as it is for the other participants in this discussion who have been following it....

My little experiment, thus far, hasn't been working out nearly as well as I first thought it was or hoped for it to be.

As I posted earlier, my 1st few days on Vesicare alone (i.e. no Avodart or Cialis) felt like a Godsend.

I even had one night where I only woke up once to pee.

But I did have some of the typical Vesicare side effects and thought I'd switch to Myrbetriq which has a better rep in that area.

[For the record, that was 3 days on Vesicare and then I switched to Mybetriq 4 days ago.]

And my first few days on Myrbetriq have been horrible even though I now realize that it took at least 36 hours for the Cialis to leave my system and that that's probably what accounts for this. (see below)

Daytime urges are as bad as ever and they've been fairly good for a while now.

At night I've been waking up every 1.5 hours, sometimes less, to pee.

But my research now tells me that neither Vesicare or Myrbetriq would start to relieve symptoms after a few doses anyway and that I'll need to try either of them for at least 1 month before I see any results.

So my positive experience on Vesicare must have been due to something else.

My guess, so far, is that the Cialis may have actually been exacerbating my symptoms, especially at night, and that by going off of it, that was what triggered my 2 nights of relatively symptom-free sleep, not me starting the Vesicare.

But I'm just guessing.

I don't really know what's going on.

But I also suspect that the Cialis WAS making it easier for me to get started peeing (because it's become much more difficult over the last few days) and may have been helping me during the day as well. (see above)

So just today, just so I might be able to get through the day and night with slightly less symptoms I decided to take the Cialis again.

In case you've lost track, that means that as of today I'm on the Mybetriq and the Cialis both, but I'm still not taking the Avodart.

And yes, I realize how stupid and/or crazy and frantic/desperate this all sounds.

But remember, I've been told both by the uro who assessed my cystoscopy and my regular uro that my prostate is only slightly enlarged now and was only slightly larger when I started on the Avodart about 2 years ago.

So I guess this experiment I'm doing is to try to find out how much of my symptoms are actually being caused by prostate enlargement and how much is being caused by overactive bladder.

It's beginning to seem obvious to me that I actually suffer from both conditions.

After about 4 months with no Avodart I'm told that my prostate wll be as large as it was when I first started on Avodart, and that that point I'll reassess going back on it.

This post is already too long and confusing.

I may post some more about how things are going tomorrow or the next day.

Thanks for listening everybody.

Drugs thank god for them but sometimes they don't work An for me I was on all prostate drugs, the one that says it shrinks well it just put off the surgery I needed and I suffered for years and years. Some procedures just fix you for a while An back that problem comes. Get your specialist to give you all the facts sn then you will have to decide what is best for you. Turp may be the answer as my dr knew my prostate was big but not until he was in there and looked at it realized there is one huge problem this man has suffered with

The meds didn't help me at all. Was on them over a year. Prostate stayed big. Only thing that shrunk was my bank account. Lol. My brother's been on them for a long time. They work for him.

Thanks...

But did you not notice what I said about me not being a candidate for surgery since I "flunked" my cystoscopy?

I was begging them for surgery a year and a half ago.

My bladder voided completely and there wasw no obstruction.

My prostate's not that big.

Anon - it seems that you're playing drug roulette without a real diagnosis. I give your Urologist kudos for refusing to do a surgery that wasn't going to help you, but fault him for not coming up with a diagnosis. If you"failed" (actually passed) your scope, then your prostate isn't the issue. It sounds like overactive bladder. Myrbetriq (and any of the overactive bladder drugs) should start helping within a week if they're going to. Give Myrbetriq 2 weeks to be sure, but if it doesn't help it may be that you respond to Vesicare and not Myrbetriq.

But first and foremost, get a diagnosis. If your current urologist can't provide one, I suggest you find another who can.

Thanks oldbuzzard

Your comments here tend to be the most on the money, afaics, and resonate the most with me.

I agree that it's good that urologist #2 was right that I shouldn't be given any unecessary surgery.

And I agree that I should get a correct diagnosis and correct treatment for whatever that condition or conditions is/are.

But both these guys seem to be totally uninterested in a diagnosis, especially uro #2 who has told as much.

[Remember also that after the cystoscopy I sought out a 3rd urologist for another opinion and he agreed with the other two.]

They both seem to want to just throw various drugs at me and see what works.

Remember, this has been going on for over 10 years now when I first sought out medical treatment for my frequent urination issues.

First, my GP was giving me Flomax at first and then Avodart, although I never gave the Avodart a chance back then.

And then he sent me to uro #1, about 5 years ago, and he basically continued with the same approach.

I only met uro #2 because he was the guy who assessed my cystoscopy when I was begging uro

#1 for surgery.

And then uro #2 told me to go on this potentially deadly stuff, Nocdurna.

At this point I trust my urologists just about as much as I trust the Internet and I think I've actually gotten much more actionable info from the latter.

And that can't be good.

But, fwiw, last night was pretty good.

Two blocks of 3 full hours of sleep.

I woke up after my 1st hour of sleep, but I did drink some water about an hour before going to bed.

So, 7 hours total sleep.

Yesterday was my 1st day of Mybetriq + Cialis (4th day of Myrbetriq) and I've been off the Avodart for 2 weeks and had been off the Cialis as well fior 2 weeks until yesterday.

Daytime wasn't too bad yesterday either.

[BTW I'm taking these both after breakfast at the moment.]

I'm also taking saw palmetto (160 mg twice daily) since stopping the Avodart, two weeks ago.

Since Cialis has efficacy for the same types of symptoms (difficulty getting started, weak stream, etc.) as the alpha-blockers like Flomax etc., and those symptoms are generally thought to be caused by prostate enlargement, it's becoming increasingly clear to me that I most likely suffer from both BPH and OAB.

And remember also that in the past, before I was on Avodart regulary, I also did have some success with Cialis alone, but then it stopped helping.

[That's happened a few times now with the Cialis.

It may be that I build uyp a tolerance to it and need to take breaks occasionally?]

And also remember that the amount of my prostate enlargement has never been that severe, even before I went all-in on the Avodart, and that's why I decided to see what would happen if I went off of it now.

But my little experiment of stopping the Avodart probably won't amount to much and I'll probably go back on it again in a few months.

I don't really expect the saw palmetto, which I'm taking to take up the slack from the Avodart, to be much help if at all.

But it would be nice if it did.

I tried saw palmetto in the past of course (I tried every freaking supplement that was rumoured to help) but I was never taking what seems to be, from internet searches, the standard dosage and type of saw palmetto which is what I'm taking now.

So I expect to be on at least 3 meds, Cialis, Avodart and one of the OAB meds depending on which one is the most effective.

The candidates are Vesicare, Myrbetriq and Toviaz at the moment [and I may even have to give the Nocdurna a shot if it gets really bad].

Surgical outcomes for OAB look even more dire than those for BPH surgery, so hopefully it won't come to that.

BTW

The last new suggestion that uro #1, my main guy, gave me was to go back to uro #2 and to ask him about alternative/experimental treatments for OAB, like Botox injections.

Oy.

Thanks for letting me vent.

Do you happen to have median lobe enlargement?  With that, you can have substantial blockage with the prostate not being greatly enlarged.

My urologist(s) have never mentioned anything like that.

Mayb I'll ask one of them at my next appointment.

But my next appointment is 6 months from now.

Thanks for the info.

A quick Googling of those terms was enlightening.

I'll look into this further.

Prostate size usually determines blockage, but not always. I have a normal sized prostate, but because of its position (sort of growing in) it caused blockage which was revealed with a scope. Assuming your scope showed no blockage along with normal size (you should confirm that) then you should rule out BPH as a cause of your symptoms.

Cialis won't hurt you, but my guess is that it isn't helping either. You may well (as someone suggested) have restless leg syndrome, for which there is a drug. Its possible that its your biggest problem and the rest (or much of the rest) is due to triggers that have developed over the years. That would expplain something like Cialis working for awhile then not - it could be a placebo effect.

Assuming no significant prostate involvement, I would do two things. First, drop all drugs and get some meds for restless leg syndrome and see if they don't solve the problem, or at least help it a lot. RLS could be why your urologists have sort of thrown up their hands - it could be that your problem isn't so much urologic. I'm not a doctor, but my sense is that your prostate isn't the driver here. Its either RLS, overactive bladder or both.

Before I contact my urologist about this...

Do you have any idea if median lobe enlargement can be a factor with a prostate that is only slightly enlarged?

Or is this usualkly a feature of a larger prostate?

As I've said here before, my prostate is only slightly enlarged.

And I don't want to waste my urologist's time.

He's been pretty good lately at responding to my emails even though it's not really part of his job as far as I know, and I don't want to abuse the privilege.

If your median lobe was obstructing your flow, the scope should have revealed that, so unless is was performed or interperated incorrectly, that probably isn't the issue.

Have your GP prescribe something for Restless Leg Syndrome and give it enough time to work. I have a hunch that's a big part of your problem.

OK. Thanks.

I'll consider what you say here, but I'm not leaning towards acting on it yet.

But based on what I know about RLS, which I just Googled, it does not seem to describe my symptoms in the least.

 

Ah.

You're saying that the cystoscopy I already had would have revealed median lobe enlargement if that was a factor, right?

Is it possible that that would not have been something that they would have been looking for in this particular test, or is that always a common thing in all cystoscopies?

[ And again, RLS does NOT seem to fit my symptomology. But thanks anyway.]

If you don't think you have RLS, then I would focus on overactive bladder. How long have you been on Myrbetriq? If it doesnt work and the side effects aren't worse than the problem, I'd go back to Vesicare and see if it works in the long term. If in fact, you can confirm overactive bladder as an issue (many months of success with meds) then something like Botox or a stimulator might be a better longer term answer. But whatever your issues are, it doesn't seem as though your prostate is much of a contributor and a IMO, you would do well to drop any meds directed at it.

Yes - the scope looks for anything that might restrict flow - an enalrged median lobe included.

Today is my 5th dose/day of Myrbetriq.

It doesn't seem to be causing any side effects, although I have yet to check my blood pressure since starting it.

It didn't seem to immediately help my symptoms.

It actully seemed to make them worse the first 3 days.

But again, yesterday I added the Cialis to the Myrbetriq and I had one of my best nights in a long while.

But of course that may have been wholly due to the Cialis.

And again, I've had similar instances of the Cialis seeming to help significantly immediately for a time.

But then my symptoms come back as strong as ever, usually after a month or two.

I still suspect that there's a component of BPH involved here because 2 days after stopping the Cialis and Avodart (2 weeks ago) it became difficult to get a urine stream started and it became harder to fully empty my bladder and my understanding is that these aresymptoms of BPH more so than OAB.

And I also had these symptoms more prominently prior to starting on the Cialis + Avodart regimen 2 years ago.

OAB seems to be more related to frequent *urges* to pee even when there is very little in the bladder and THAT is my main issue, especially at night.

But as I said before, my 3 days on Vesicare alone seemed like it was helping, right away, even though it's not supposed to be able to do that.

It might just have been the shock to my system of me going cold turkey on the Cialis + Avodart that gave me those 3 days.

The side effects of the Vesicare were more obvious and uncomfortable.

Dry mouth. Cold symptoms.

But it may well be that I respond better to the Vesicare than I do to the Myrbetriq.

I sure hope it doesn't come to Botox and/or a pacemaker for my bladder.

Geez. I'm only 63.

I plan on giving the Myrbetriq a month and then I'll reevaluate.

So I guess I can rule out the median lobe thing.

Thanks.

I won't bother my uro about this then.

Bladder problems can definitely result in a slow start/weak stream, as can BPH.

OK. Thanks.