Bladder Pressure? Meds? Or New Problem?

[TXPOTS]

I was finally diagnosed with hypovolemic POTS after 2 years of being misdiagnosed. I have the very low renin, aldosterone, and partial diabetes insipidus. The DI is central, but not due to lack of ADH in the pituitary. It is thought to be neurologic due to denervation of the kidney and lack of triggering of the renin-angiotensin- aldosterone system which has partial control of the release of ADH from the pituitary. My regimen is Florinef, DDAVP, salt, and exercise. This has brought me from being totally bedridden to about a 5 on a scale of 1-10.

In arrives another problem.... After being on the meds for 3 months, I have developed this annoying bladder pressure. My DI appears to fluctuate. I am seeing a urologist who has no idea what this is. I am on potassium citrate to see if alkalinizing my urine helps. I have also cut back on the salt until we sort this out. I will move on to treatment for overactive bladder if the potassium citrate doesn't help. As a last resort, they will check for interstitial cystitis which the urologist said involves general anesthesia. No thank you!

I do not think this is related to my POTS. I have had this for 2 years and never experienced this bladder pressure. I do not have a UTI. It seems to be worse before my period. The bladder pressure started 3 days after I started taking DDAVP during the day. Any ideas? Anyone experience this? It feels like someone is stepping on my bladder, and I have to pee, even when my bladder is nowhere near full. I suspect it has something to do with the meds, but I am not sure which one or why. I'm a pharmacist, and I still don't have a clue, along with my urologist. I am interested in any thoughts, suggestions, or motivation to get past this latest set back!

As if having POTS wasn't bad enough!

[juliegee]

Welcome TXPOTS-

Sorry to hear about your latest symptom . I agree that it seems suspicious that your new symptom occurred shortly after adding a new med. Can you cut it out for a few days to see- w/o enormous implications OR is there another med that might do the trick w/o the side effect.

I did suffer from interstitial cystitis for years in my late 20's- early 30's. I am in remission, but still have twinges. Mine started with a REAL horrific bladder infection that never seemed to go away. Even after my urine came back as fine, my symptoms were there. I hate to say- You are describing them well. The worst for me was bedtime. Every time I lied down, the feeling that I had to go was overwhelming. I got up to use the restroom and a mere trickle came out. Grrrrrrrr. I was very uncomfortable in my own body for y-e-a-r-s.

Many with POTS have interstitial cystitis....I also have a condition called mast cell activation disorder/MCAD, which causes my POTS. Many with MCAD also have interstitial cystitis.

I hope it goes away as inexplicably as it came on.

Julie

[TXPOTS]

Welcome TXPOTS-

Sorry to hear about your latest symptom . I agree that it seems suspicious that your new symptom occurred shortly after adding a new med. Can you cut it out for a few days to see- w/o enormous implications OR is there another med that might do the trick w/o the side effect.

I did suffer from interstitial cystitis for years in my late 20's- early 30's. I am in remission, but still have twinges. Mine started with a REAL horrific bladder infection that never seemed to go away. Even after my urine came back as fine, my symptoms were there. I hate to say- You are describing them well. The worst for me was bedtime. Every time I lied down, the feeling that I had to go was overwhelming. I got up to use the restroom and a mere trickle came out. Grrrrrrrr. I was very uncomfortable in my own body for y-e-a-r-s.

Many with POTS have interstitial cystitis....I also have a condition called mast cell activation disorder/MCAD, which causes my POTS. Many with MCAD also have interstitial cystitis.

I hope it goes away as inexplicably as it came on.

Julie

Thanks for the welcome and reply. I don't have many of the MCAD symptoms, but that is a very interesting correlation. Gosh, I hope it is not IC, but that seems to fit best. I do not want to have to undergo general anesthesia as my POTS is not particularly stable. Oddly, the DI seems to come and go. The severity fluctuates as does my POTS. I am in a phase where I seem to have fluid on board because my veins are full and huge. I went for 2 years with shrunken veins. I am trying to figure out if the bladder issues are related to my meds, fluid status, or more likely, IC. As we all know, lack of sleep, is so bad for POTS, and this bladder pressure is making life difficult.

[kayjay]

I have a similar problem but it is much better now that I am on my "POTS" meds. Sorry you are dealing with this. I used to fear I would wet the bed or something. Maybe changing your meds would help? I used to wake up many times (4=) every night feeling like I had to pee. I think the Klonopin and beta blocker may have helped me?

hope you figure this out and are better soon! keep us posted!

[kayjay]

Oh sorry one more thought. Could you have endometriosis? You mentioned that it is worse before your period. It is not uncommon for endometriosis to attach to your bladder.

[Griffin]

I get the same symptoms. It seems to be associated with extent of exhaustion in my case. If I do too much, I get it. The only thing I found that relieves it is an OTC cystitis med. called Cymalon - others don't work. Tests show no infection and I had cystoscopy which showed nothing too. It's very annoying and at it's worst drives me nuts. The one good point is it gives me a sign that I am doing too much so I know I need to rest more. Echo what others say, seems like Intersticial Cystitis - but I think it's not really that but just that''s the closest condition to it.

[TXPOTS]

Thanks for the responses. I initially saw an ob/gyn who referred me to the urologist. It seems very isolated to my bladder. It is especially bad right after I eat or the more concentrated my urine is. If I back off my Florinef, salt and stop the DDAVP, my bladder is better (not perfect, but better) which then causes my POTS to act up more. It is very, very frustrating. From my own reading, it sounds most like interstitial cystitis. I am just so darn frustrated. Everything, medication wise, that I try to take for my POTS causes another unbearable side effect. I have also tried clonidine and Midodrine. I had bad reactions to both of those. I will look into the Cyamalon. The urologist wants me to go under general anesthesia and have a cystoscopy to check for IC. It seems to be med related, so I really am against doing this due to the implications of general anesthesia.

[McBlonde]

TXPOTS,

I have had this symptom, too. Did your endo check your estrogen levels? When I was on Estrace, the symptom completely went away.

[TXPOTS]

TXPOTS,

I have had this symptom, too. Did your endo check your estrogen levels? When I was on Estrace, the symptom completely went away.

Good thought. My periods have been regular, so I assumed all was ok, but the bladder pressure seems cyclical. I better have this checked. Many thanks.