Is This Typical?

[Wolfe]

My most predominant symptom is that a flare knocks me flat. I haven't heard anyone describe their IC quite like this.

I mean, I know a day ahead that a flare is coming because I'm not only tired, I can fall asleep anywhere. By the next day, I'm in bladder pain, wrung-out and light-headed. I can be lying down and feel like I'm going to faint. How can you faint when you're lying down?? And if I get up, I do faint.

This is by far my biggest struggle with IC: the 2 or 3 (unplanned and unpredictable) days a week that I'm suddenly prone, confined to the sofa, and weak as a kitten. Is this atypical? Is this due to inflammation? Does anyone have a trick that helps counteract a wipeout?? My uro looks at me like I'm speaking a foreign language when I tell her about this, so I'm starting to wonder if there's a secondary condition that brings on an IC flare as a result.

I do have low/normal blood pressure, and my most common side-effect with meds is a drop in blood pressure, but my IC has done this to me for years, and I haven't changed my meds in quite awhile. I just keep on having these "inflammation flares."

Thanks in advance for listening and for any suggestions!

[ICNDonna]

It sounds like you may have something else going on. I get tired when I have pain, but I've never had it really cause any kind of dizziness or feeling faint.

Donna

[SharonA]

Have you talked with your PCP or any other doctor about this? If not, I think you should. I hope you are able to find some answers.

[Wolfe]

I have talked with my PCP and my rheumy, as well as my uro. They all just attribute it to the IC, which is why I wondered if it is at all common. Maybe "low blood pressure" is just my body's response to just about everything.

[girl]

Well, if it helps anything, you're not alone. I do this when I have my worst flares - I run a fever also. They have done every test in the book, and have found nothing. However, I also do this when I am otherwise ill, so they have decided that my body just has extreme responses to some stimuli.

It happens usually with me when I am having a flare during peak allergy seasons, and the amount of histamine in my body goes sky high. I someties will also break out in hives. Perhaps you could be having a histamine response also? This is interesting, as both my uro and my allergist have never had another patient who does this. Oh, and I have abnormally low blood pressure, so that makes the fainting part easier!

And mine always lasts two to three days - never one and never four.

Well, at least we know we aren't the only one out there!

[leelee88]

Maybe a second opinion might be needed, but having fibro and IC I know when both flare can really knock you back. I have not been officially Dx with Fibro but my GYN and URO strongly suspect it. I have an appt next week with a rheumy but I know I have it with no doubt. But I never pass out but do get dizzy sometimes and just feel like I have no strenght to move any parts of my body..

[BrittanysDance]

Have you ever had a tilt table test? This will tell you why you have low BP and why you feel so faint while laying down or standing up or sitting even. Its very important to go see a cardiologist. I have Orthostatic Hypotention (low blood pressure) but its caused by a genetic defect (seen by a tilt table test and catheter to my heart and scans) of my areteries and the way I'm "wired". Its the only test that can tell you specifically whats going on.

I'd highly recommend you see your Primary Care dr and get this looked at. I would pass out for no reason (didnt matter where...the last resort was while I was driving....) It could save your life or someone elses. I wasnt diagnosed until I was an adult well into my mid 20's, which is when it usually surfaces (adulthood). I also have Mitral Valve Prolapse, which wasnt detected until 2 years ago.

Hugs,
Brittany

[ngazerro]

I know when I have a fibro flare I get really tired the day before. I also have low blood pressure. The fibro is what I think causes me to get so tired. I can tell the day before my fibro acts ugly that I just get extremely tired and my arms and legs feel so heavy. The next day I take it easy and get as much rest.

[Wolfe]

girl, you are my story exactly! I'm sorry to say but it does help to know that someone else goes through this. I have normal/low blood pressure, which is probably why no one has been too concerned about it all. And the histimine thing makes perfect sense; I should have thought of it myself! I'll start taking Benadryl at night again. It should help me get through this pollen season.

Ronda, you have a point: maybe it's that my fibro is letting me know the day before my bladder kicks up. Or the fibro flare causes a bladder flare. I'm just grateful that I have a pattern and can see it coming. I hope your rheumy has encouraging news for you.

Brittany, just the words "tilt table" make me feel disoriented. I know something like that would really mess me up. So I suspect you are on to something, and I'll ask my doc about it. I appreciate the info so much. Doesn't sound like a fun test, but you sound like you're dealing with the whole thing like a champ.

Nagzerro, I'm with you. There's not much I can do but rest and pretend things aren't waiting to be done. Aggressive Rest Therapy (ART) works wonders; I hope it does for you too.

Thanks everyone!

[crkshnks79]

Hi :) A tilt test isnt that bad , altho it is disorienting ... You lie on a flat table and they tilt the table so that your feet are higher then your body and they take your blood pressure , I think they do this at different degrees??? ( I had it done years ago for the same thing low BP , but cant remember everything they did ???) I used to be dizzy and faint all the time out of the blue !!! COme to find out I have a problem w the part of my nervous system that is supposed to regulate my BP , it doesnt work right . I still get it from time to time , but WAY less now , the docs dont know why it changed again ... They also suspect I have Fibro as well , I get real weak, so achy and tired , its horrible . I hope that you find some answers because its a horrible way to feel !!! My old PC didnt take me seriously for the longest time w the fainting and I wound up passing out in my kitchen while I was home alone w my daughter who was 14 months at the time . My fiance stopped in from work to find me on the floor w my head bleeding and my daughter in the cabinet that held the cleaners ( usually it was locked but I was standing in front of it cleaning when I passed out ) After that I freaked out and went to the ER where they decided it was a good idea to cut my drivers license in half and call Penndot to get it revoked . Thank God my dad was w me because he freaked on them saying " you dont even know what the hell the problem is !!! You cant just cut her license w out a diagnosis first !!! " They admitted me and I had to see a neuro doctor , anyway they got it all figured out and I was put on some meds that upped my blood pressure and I got to keep my drivers license . I dont really get episodes like that anymore but my point is you shouldnt let that go . Make the doctors listen to you !!!! I hope you feel better soon !!

[Wolfe]

Oh, Lauren, what a story! I think I would have been so frightened. But you do remind me that though my blood pressure has always been low/normal, it didn't really start "bottoming out" until the Fibro started up.

I do agree that for some people, any upset causes headaches, for some stomach aches, and for me, I just gotta sit down, LOL. Next time I see my doctor though, I AM going to ask her about doing some basic tests and lab work. Underneath all these "conditions," it's good to be really healthy.

[snowgirl]

Have you ever had a tilt table test? This will tell you why you have low BP and why you feel so faint while laying down or standing up or sitting even. Its very important to go see a cardiologist. I have Orthostatic Hypotention (low blood pressure) but its caused by a genetic defect (seen by a tilt table test and catheter to my heart and scans) of my areteries and the way I'm "wired". Its the only test that can tell you specifically whats going on.

I'd highly recommend you see your Primary Care dr and get this looked at. I would pass out for no reason (didnt matter where...the last resort was while I was driving....) It could save your life or someone elses. I wasnt diagnosed until I was an adult well into my mid 20's, which is when it usually surfaces (adulthood). I also have Mitral Valve Prolapse, which wasnt detected until 2 years ago.

Hugs,
Brittany
Very good point made here. Low blood pressure will make you dizzy and faint but why is it low? You need to see your family md and have some tests run.
Have you had an EKG done? Lab tests? More cardiac tests like Britanay mentioned all great diagnostic tools and should be followed by an MD. Your IC is not doing this there is an underlying reason and your family md should and needs to run some tests, lab work and figure this all out for you. Good Luck

Vicky

[Wolfe]

I promise, I'll get it checked.

I might add that I'm 52 years old, and even my normal body temp has always been low, 96.4. When I first "crashed" 18 years ago, IC and Fibro at the same time, my roommate was a critical care nurse, which means she was always taking my blood pressure and always dragging me to the doctor. I can't remember all the tests, but there probably haven't been enough done recently.

Thanks, everyone. I'll make an appointment. My doc LOVES to do tests, LOL. She'll be happy to see me.

[lisabar36]

Hi there. I have low blood pressure. Always have, so I know my normal is pretty low. However I have days where I feel dizzy, lightheaded, and then I know my blood pressure is probably even lower. I have had ekg's. I don't get dizzy or lightheaded often. Once in a great while though. I would have yourself checked out. I know the feeling of being of being looked at like your speaking a foreign language. I complained to every single doctor I have ever seen for IC that I cannot relax my pelvic muscles and therefore I have pain and of course it was leading to more pain and that every time I did, I felt the urge to urinate, even if I just went. I have had so many docs look at me like I have 3 heads. I have had IC since 1999, and no doctor ever treated that until this past doc that I just started seeing, and he explained why it was happening. It can be frustrating. So I would call your primary doc even and tell them whats happening. Make an app, go in and explain. Its VERY important to have that checked out, especially if you feel faint.

[girl]

Yes, it was startling to me to read your story! It just sounds so much like me! In my case, I've HAD all the tests, the cardiac monitor, the tilt table, etc, etc. My blood pressure has always been abnormally low, all of my life. So is my mother's. So they decided that this IS "normal" for me.

The problem comes when something lowers it; in this case, a histamine response. It's already so low it doesn't take much to go to fainting.

I hope you find out what's behind yours; it's almost more frustrating to be told that there's nothing wrong at all! They could give me medication to keep my BP higher, but I don't usually need it. So I just rest as much as possible for about a month in the fall and a month in the spring (allergies).

Oh, and my body temp is always between 96 and 97 degrees. Are you sure we're not long lost twins? lol

Good luck!

[lisabar36]

Girl, I used to run fevers with my flares. Low grade fevers. I had SO many tests done and they were all ok. They even did blood studies. Once I started meds, I have not had any low grade fevers with my flares. I have no idea why. :confused:

[girl]

Lisa, I know isn't that frustrating, to not know why? They honestly cannot think of a single test left to do; and yet we still don't know why I have such weird symptoms with my flares. Oh, well, at least the flares aren't so frequent anymore!