2 types of flares? Flu-like symptoms? Help?

[nineteenwinters No longer active Find all posts View Profile Close nineteenwinters]

Hello all,

I was diagnosed a month ago and only showed symptoms a month before that (I know I am quite lucky.)

So this is the 3rd week I have been on the IC diet (strict - only maybe food I have had was avocado and root beer barrels but I didn't get a flare from either). My flares come about 3 hours after I eat something bad and last for a few hours.

I am on Vesicare, Elmiron, Elavil, Allegra, Pyridium and Nucynta for pain. I had a Cystoscopy 2 weeks ago to re-confirm my diagnosis.

Since Monday I have not had any significant pain. IE, I wouldn't even have to take ANY form of medication for pain; not even Tylenol. BUT. I am getting the oddest symptoms from noon-4pm. I feel like I have a fever (but I don't). And my frequency increases. It's not even like a flare for me at all. It's not a flare frequency but it's just like I drank a lot of water and have to pee a lot. Also if I stand up I feel like my head is tilted (the room looks tilted). I am not dizzy, it's just everything's not straight.

Through trial and error I have discovered if I take half of a pain pill (Nucynta) it goes away. The fever feeling, the tilted room, and the frequency.

I told my doctor about this so he tested for infections (since I had the cystoscopy I am guessing) and like he thought there's no infection at all. (I was on a week of antibiotics after the Cysto too).

He can't give me an explanation as to why I feel like this. He basically said, "That's what the Nucynta is for and if I am not afraid of you being on it for a while you shouldn't be either." But I am. I don't want to stay on a narcotic for longer than I need to. I know Nucynta is less habit forming and doesn't screw with your head as much as others out there but still.

Any suggestions as to why this is happening? It basically feels like the flu every afternoon for me.

I have tried drinking more water (2 is what my norm is; I know this is low for some people but I have a lower tolerance for water (Yes I am a medical freakshow heh) and I work from home so I don't need as much as I did say when I was in school). But I have tried drinking 5-8 a day just to see if it was that. It only made me further ill.

Basically I am at a loss as to what to do. I work in the afternoons and I can barely concentrate because of this.

How long did your first 'flare' last? I feel like I have 2 kinds of flares. The horrible ones (like when I drank a Red Bull last month) and I hits me for 3 hours hardcore. And then a 'constant' little flare like I am still having even with the meds/diet.

At this point I am kind of just depressed. I think it's mostly because in the span of 2 months I went from totally healthy to totally not healthy. I didn't even get the chance to have like my favorite last meals before I had them ripped away from me. I have lost 10 pounds in my diet weeks just because almost all the 'good diet foods' happen to be ones I hate. So it's a lot of oatmeal, PB, chicken, potatoes and noodles, and cucumbers for me. How long did it take you guys to 'mourn' your old food
My mom (bless her) is trying to make me some OK recipes like jack mac and cheese, and red bell pepper sauces (to substitute tomato) and cottage cheese ranch etc. But since I hate jack cheese and peppers and cottage cheese to begin with I am not liking these at all.

My doctor thinks that my IC (ulcers/sores) came from Red Bull mostly. I was a 1-3 a day drinker. I like the taste (it stopped giving me energy years ago) so I was drinking those in substitute for sodas. Basically my cysto showed that when my bladder stretches my bladder lining does not - it rips apart hence my sores. And that because of the Red Bull I can't even have spicy foods now because my bladder lining is pretty non-existent. He told me I could probably even have any food I wanted with some prelief (minus caffeine, spicy foods, and alcohol) but I am scared to try. I wanted to get this long flare over with first.

*sigh* Sorry this is so long. I am just so desperate.

[earthlady ICN Member Find all posts View Profile Close earthlady]

Maybe it's from the combination of meds you are taking. I'm very medication sensitive and I used to get sick to my stomach from just pyridium. The OAB meds also made me feel ill and sometimes I would break out in a sweat. I think that drs. are so used to prescribing a combo of meds that they fail to realize not all people can handle it. Prosed was one med that made me feel like the room turned- not really dizzy but just like everything moved suddenly. A really strange feeling.
My flares were all different. In the beginning when it started it was one long 4 month flare and afterward before I got serious about the diet they would last a few days to a few weeks. After I got serious about the diet they were a few hours or maybe overnight. Now I don't hardly ever get one.

[ICNDonna ICN Staff Find all posts View Profile Close ICNDonna]

What you're experiencing could be because you were drinking a lot of a very high caffeine drink and your body may be addiction --- if that's the case, you should feel better in a week or so when your body is more accustomed to being without it. People go through the same kind of thing when they stop smoking. It's not fun.

I hope you feel better soon.

Warm hugs,
Donna

[nineteenwinters No longer active Find all posts View Profile Close nineteenwinters]

It could very well be the drugs. I just don't know which one(s) would be the cause. I am hesitant to stop taking any of them because I am so new to this. I would cry if I went back to the frequency I was before them. I think I'd rather have the 'flu' for a few hours than have to pee every 5 minutes. Maybe I'll be lucky if it is the pills and after my first month or so this problem will go away.

It could also be the caffine. I did go off of it when I was 18 until I was 19. While I only had withdrawl symptoms for a week I wasn't drinking Red Bull it was just Dr. Pepper mostly. I really hope it is the caffine and not the pills.

Thanks for the advice.

[Mothergoose ICN Member Find all posts View Profile Close Mothergoose]

I had similar feelings for quit awhile, although not the head tilt, the only way I found to deal with it was to lie down and have a nap every afternoon, I think it was my bodies way of saying I needed a rest.

In time this pasted unless I get over tired and then I will feel the same way again.

Did you substitute the Red bull with anything sugary because if you did it can perk you up and then have a rebound effect of making you drop and if your sugar level goes ow you can feel this way.

You could ask your Dr. to do a fasting blood sugar test on you, it is quick and easy.

Good luck MG

[nineteenwinters No longer active Find all posts View Profile Close nineteenwinters]

Hmm...I will have to try taking a nap during my lunch break. I have been sleeping a lot (11pm until 10am) so I thought I was getting plenty of rest but maybe not. I haven't had anything to drink but water and Chamomile tea once in a month. I did have my sugars tested 2-3 weeks ago to make sure I didn't have diabetes but maybe it was too soon. I hope mine passes like yours did. I am beginning to get depressed. If it's not a flare up its this. I wonder if ill ever have a normal life again.

[Mothergoose ICN Member Find all posts View Profile Close Mothergoose]

Things do get better it takes time to get it all figured out.

You maybe sleeping lots but sometimes it comes down to quality of sleep, this was my issue.

Now that I don't eat sugar and my sugar levels don't swing up and down this tiredness is not such a problem for me.

Be patient it takes lots of trail and error to get everything involved with IC figured out.

MG

[nineteenwinters No longer active Find all posts View Profile Close nineteenwinters]

Just thought I would reply since I finally figured out what was making me so yucky. It's the Nucynta. Apparently it only took me a weeks worth (after my Cysto pain) to get ridiculously addicted. Over the weekend I spent all day in bed trying to see if 'rest' would help. It didn't. I tried taking Tylenol to take the edge off and it did absolutely nothing. It was then that I realized what was happening. Sure enough I took a 1/2 of a Nucynta and it 30 minutes I went from bed ridden to 100% feeling great.

So now I am just tappering off of it like I have done with Prozac and Clonazepam in the past. It's insane how addictive some things can be!

[Pammylynn8 ICN Member Find all posts View Profile Close Pammylynn8]

ughh yes some medications are so addictive!! I take klonopin and I dread the day when I will have to wean off it as well!
As for the two types of flares, I get both like you do. A really bad one that lasts a few hours and a minor underlining one. I wish they would just go away! I do morn the loss of food as well. The month has been a crazy reality wake up call for me. I was first diagnosed with food allergies to wheat, dairy, eggs, beef, lamb and a few others.. then I went on IC diet. Basically I feel like I am eating in a retirement home at time. Not that there is anything wrong with a retirement home, but as you know the food is super bland and never seasoned. Pretty much what I eat. Oh well, I guess it could be a lot worse for me!

[nineteenwinters No longer active Find all posts View Profile Close nineteenwinters]

I had a really bad experience with Klonopin so I only took it a few days. I bet it's like Clonazepam is though and when you wean off it will take a few months. It's not fun but it is managable. Especially after living with IC!

I totally agree about the food. I know some people on our diet really don't mind it but it's horrible to me. I miss flavor. The only time I get to eat something I feel has flavor is when I mix avocado with garlic. To me that's the closest thing I can get to 'spicy tasting'. I have taken to having a little of that every day but I know I am going to burn out eventually.

[meResque ICN Member Find all posts View Profile Close meResque]

Exact same thing happened to me with Tramadol. I'm glad you figured it out. Took me only a week of being on it, and when I came off I got SEVERE withdrawals- which I hadn't gotten being on Vicoden or Percocet for much longer periods of time.

[kierd ICN Member Find all posts View Profile Close kierd]

Glad ur feeling better! I feel u on food thing im italian. I miss my morning coffee soooo much. Plus im chocoholic.....i got diagnosed in june....have been always prone to utis thought it was that and it turned into this. Soooo thankful i found this forum with so many caring people!! Hope ur still feeling better
Kierd

[nineteenwinters No longer active Find all posts View Profile Close nineteenwinters]

Ugh, withrawels suck.

It was weird for me I got my first UTI 2 months ago which set off my IC full force. And of course I was consuming massive ammounts of cranberry juice and craberry supplements. Ow.

[kierd ICN Member Find all posts View Profile Close kierd]

lol................that is what I was doing too, sooooo hurty. Now yummy boring diet!! But if it keeps me from flares it is worth it.