What the heck is going on? Need feedback!

**Hannah13** · 09-16-2010, 03:45 PM

Ok. I'm hydrated. I don't have a uti and I've got PT for high tone pelvic floor dysfunction coming out my ears plus I work from Amy Stein's book every single day. *I usually have my voids down to every 2 hours. (with great difficulty.) but for the past 6 days anytime after 4/5 pm I'm lucky if I can hold it 45 minutes. *There's been no changes in my diet, meds or habits. *I can't understand why this is happening and it's making me crazy and miserable. *I see my uro in 11 days and have written up everything to go over with him but I'm losing my mind. *What the heck is going on?

Love, H.

**mela414** · 09-16-2010, 03:52 PM

I'm sorry you're having such a difficult time. Are you eating or drinking anything different? Any new meds?
I hope you get to the bottom of this soon...hang in there. :grouphug

**Hannah13** · 09-16-2010, 03:56 PM

As my post said there have been no changes in diet or meds of any kind. Thanks for well wishes. I really need to understand what's going on.

Love, H.

**traceann** · 09-16-2010, 04:12 PM

Things that could bother me other than my meds, foods or habits were, for example, where I was at in my monthly cycle, constipation or my mood (for lack of a better term, lol). Or could one of your diet staples have changed formulation or anything? Like "new and improved",

or whatever along those lines - or even something in the formulation/ingredients that aren't apparent on the packaging (such as the words "new" or "improved") but is reflected in the ingredient list?? Hope you figure this out soon!

**Hannah13** · 09-17-2010, 08:55 AM

Originally Posted by traceann

Things that could bother me other than my meds, foods or habits were, for example, where I was at in my monthly cycle, constipation or my mood (for lack of a better term, lol). Or could one of your diet staples have changed formulation or anything? Like "new and improved",

or whatever along those lines - or even something in the formulation/ingredients that aren't apparent on the packaging (such as the words "new" or "improved") but is reflected in the ingredient list?? Hope you figure this out soon!

My diet is pretty insanely restricted and the labels are all the same so far. (A lot of it is fruit, veggies and stuff w/o labels too) for all I know a food that WAS safe has decided not to be anymore. Like the way I used to be able to eat bananas and now can't. Also trying to figure out why it always kicks in bet 4-6 pm every single day no matter what physical activity I am/am not doing is maddening. (What food I am/am not eating, etc.)

My meds are at a steady level all day so that's probably not it. Even using heat, muscle relaxants and normal flare tactics are not helping. I'm lost and I'm frightened and I'm sad. Everytime I get the tiniest bit of my life back this disease takes it away again. I worked insanely hard for over a year to get my voids down to once every 2 hours and to have that taken away for no discernible reason is brutal.

The resultant depression is likewise brutal.

Love, H.

**NancyB** · 09-17-2010, 09:38 AM

Dear Hannah -

What kind of water are you drinking?

NancyB

**Hannah13** · 09-17-2010, 01:33 PM

Originally Posted by NancyB

Dear Hannah -

What kind of water are you drinking?

NancyB

Evian, it's what was reccomended to me and it's what I've been drinking with no incident for over a year. I hope that's not the random thing my body has decided to reject. :/ And if it is, why only in the 4pm/6pm on zone? the timing issue is so weird.

Is there a water you suggest? I have nothing to lose. Lol. I know poland spring is bad for me.

The only other things I drink are almond milk and coconut water, both organic, no preservatives, additives, etc.

Love, H. Thanks so much for your response, it's one of the few things that keep a slippery grip on my sanity, feedback from other ICers.

(Who misses tea, lemonade, sangria, etc. my life is in the bland zone.)

**NancyB** · 09-18-2010, 05:46 AM

Dear Hannah -

I would not think that Evian would be bothering your bladder now if you have been using it for a year with no problems. However, a lot of ICers cannot tolerate it. I would try another brand like Ice Mountain or Crystal Geyser. Both of those are spring water with nothing added.

Hope this information is helpful to you.

NancyB

**Hannah13** · 09-18-2010, 12:48 PM

Originally Posted by NancyB

Dear Hannah -

I would not think that Evian would be bothering your bladder now if you have been using it for a year with no problems. However, a lot of ICers cannot tolerate it. I would try another brand like Ice Mountain or Crystal Geyser. Both of those are spring water with nothing added.

Hope this information is helpful to you.

NancyB

I'm in NYC and have not seen those brands but i'll keep an eye out.
I finally caved in and took a urelle after a week of this. I don't like urelle because my symptoms get worse when it wears off but I just need a break!

Love, H.

**Daisy Mae** · 09-25-2010, 06:53 PM

Your symptoms get worse after taking Urelle? I never have noticed that, but I do rely on either pyridium plus or urelle every single day. I had no idea that it might cause the symptoms to get worse when it wears off. If so, I'm in major trouble!
Any clues yet as to what might be going on with you? I will pray for you. I know it's so hard to be trapped in a horrible flare and not being able to get out.
Please keep us posted as to how you're doing!

***ICNDonna*** · 09-26-2010, 02:39 AM

When I'm at home I drink tap water from our deep well. We have an ultraviolet filter so I'm not concerned about purity. When away from home, I buy bottled spring water, with no additives.

One thought I immediately come up with --- when we go to bed at night, we usually have six to eight hours when we don't eat or drink. If your 4 O'clock flares are consistent, it could be something you ingest regularly throughout the day (water?) and builds up in your system. Evian is mineral water and could be a problem for some ICers.

Donna

**Hannah13** · 09-26-2010, 10:34 AM

Originally Posted by DonnaRenee1

Your symptoms get worse after taking Urelle? I never have noticed that, but I do rely on either pyridium plus or urelle every single day. I had no idea that it might cause the symptoms to get worse when it wears off. If so, I'm in major trouble!
Any clues yet as to what might be going on with you? I will pray for you. I know it's so hard to be trapped in a horrible flare and not being able to get out.
Please keep us posted as to how you're doing!

Those drugs work great when they're in full swing but when they wear off I flare for days. Makes me afraid to take them short of emergency.

Love, H.