jenglynn Posted February 17, 2012 Report Share Posted February 17, 2012 Just saw the post on increased urination- for the last month I've had the opposite problem. I take 15mg of Midodrine 3x a day and drink ALL day long. I feel like my bladder is full, but then when I try to go I wait, wait, wait and so on. I usually have to try several times because I sit too long, get tachy or syncope... Learned my lesson after that one! IF I go once or twice a day, it's a miracle. I'm not swelling, in fact in the last week I've lost 5 lbs... SO what is happening to the fluid??? It's very uncomfortable because my bladder always feel full... I have an appt. with a Urologist next week who works a lot with neuro patients. I was just hoping in the meantime anyone had ideas or if they face the same thing ever????Thanks! Jen Quote Link to comment Share on other sites More sharing options...
Tachy Phlegming Posted February 17, 2012 Report Share Posted February 17, 2012 No personal experience but you might look up Rach73 (I think that's her handle). I think she had that problem on Midodrine.If it isn't that, you can look up Bethanechol. Again, no experience, but if I had that, I'd think about that med... Quote Link to comment Share on other sites More sharing options...
rach73 Posted February 17, 2012 Report Share Posted February 17, 2012 Hi,yes I do have that problem. I also feel like someone is trying to access my bladder with a red hot poker!At last I am not alone do you know how many forums I have asked about this on? Its urinary retention as midodrine also works on the bladder spincter keeping it shut. You need to ensure you dont start getting urine infections due to the retention.I was on amiltryptiline which also works on the bladder spincter so I have changed to gabapentin and will start the midodrine again shortly to see if the side effects are any better.Other than that Im afraid there isn't any advice I can give you - perhaps speak to your dr about lowering the dose and see if your bladder works better on that? I had problems on 2.5 mg twice a day I would be ok for 4 days then needed two days off. As I increased the dose the shorter the amount of time was before I had problems and I needed longer off to resolve the issue.Unfortunately we are the unlucky ones!Rach Quote Link to comment Share on other sites More sharing options...
mully2014 Posted February 17, 2012 Report Share Posted February 17, 2012 I also had retention on the midodrine also. I would mention it to your doctor. I couldn't stay on the midodrine because I got about every side effect from it. I hope that it gets all figured out for you! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 17, 2012 Report Share Posted February 17, 2012 When my POTS was severe I had a problem with urinary retention. I was told it was due to lack of activity (I was in bed too much). I think it may also have been affected by the c-section. It resolved but I did see a urologist who prescribed a med--I don't remember now what it was but it was to prevent infections basically--b/c part of my problem was due to retention I kept getting infections which was preventing the bladder from healing (I guess). Also the repeated infections were making my POTS symptoms that much worse. Quote Link to comment Share on other sites More sharing options...
mwise Posted February 17, 2012 Report Share Posted February 17, 2012 Sorry you are having difficulty with urinary retention. I have the opposite. I go constantly and have urinary frequency/urgency. I know every bathroom in my home town and to/from work. I take Midodrine 7.5mg 3xday & prn when I am out late and drinks tons of fluids during day & night. I wish I didn't have to go as much. I will take any suggestions for the opposite. Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted February 17, 2012 Report Share Posted February 17, 2012 Your PCP can go ahead and get an IVP now. It will show if you are retaining urine (and if you are, should get a urine specimen for culture to see if you need an antibiotic). Medication did it to me once (thing was, I started the medication and couldn't void at all--so I called my doctor). The same risks for bladder infection would apply if your bladder is not emptying completely. I retain fluid like cray (one reason I try to keep the legs up as much as I can). I was curious to see if doing my recumbent bike might help with moving moving the fluid in my legs, but if it has, it's not been much. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 17, 2012 Report Share Posted February 17, 2012 Sometimes medication can help. Like a smooth muscle relaxant, Urogesic Blue, can help with bladder spasms, which I have, if I drink too much water. I bet this one might work for you as well. Talk with your doctor. You will need a prescription for this one, but it relaxes the sphincter! Quote Link to comment Share on other sites More sharing options...
rach73 Posted February 21, 2012 Report Share Posted February 21, 2012 Hi,I just want to explain, I still pee like theres no tomorrow with the midodrine it just takes a lot of concentration, pushing and moving into different positions to be able to pass urine. Im now back on midodrine -first day since stopping amiltryptiline so I will know in a few days if the symptoms are any better.Rach Quote Link to comment Share on other sites More sharing options...
jenglynn Posted February 21, 2012 Author Report Share Posted February 21, 2012 I ended up with my worst concussion yet trying to pee in the middle of the night a couple weeks ago.... Guess I was sitting too long and then came syncope- first hit my forehead on the sink, bounced off and hit the toilet and then face first on our bathroom floor- in a basement- concrete with linoleum over it. My face is just now healing up after that one.I've also had problems with incontinence.... Just sitting down, no urge to go t all and I looked down and I've wet myself. It's humiliating. That's actually how I got admitted to Mayo as an emergency admission- there were a few organs that just weren't functioning.I see a urologist tomorrow who specializes in neurological conditions so can only hope answers come my way. I drink ALL day long... I drink at least 3- 32 oz cups of Gatorade and 4-5 32 oz of water- yet pee MAYBE once a day, if I'm lucky? And every day I'm losing another pound (lost 10 pounds in the last 2 weeks). That fluid HAS to be going somewhere!!!!! So frustrating. Thanks for your help everyone! I will let you know what the dr says. I am also prone to bladder, UTI, and kidney infections and this has all gotten MUCH worse after I went through the rejection of the IVIG treatments.Jen Quote Link to comment Share on other sites More sharing options...
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