Interstitial cystitis...any migraine connection?

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Interstitial cystitis...any migraine connection?

Post  milo on Fri 09 Mar 2012, 8:44 pm

For years I've dealt with all kinds of crap going on with my body. I take things on one at a time and get very frustrated as getting a regular GP here is near impossible.

Today I left the doctors office in tears. I'd went in because I've been having serious dizzy spells but also had symptoms of a UTI. Fot the last year I've came in with the same UTI symptoms but my dip sticks always come up negative for a UTI. Today the doctor was obviosly sick of hearing about it and basically told me to deal with it and that she would not give me any antibiotics. (for years I would get a script for macrobid and be on my way, but this doctor does a dip test instead and has firmly said no. This treatment was suggested yaers ago by a urologist when they investigated my symptoms).

It makes sense, as I shouldn't need antibiotics if there is no bacteria. I wasn't nearly as frustrated with her emphatic "no" as I was by having to face dealing with these ongoing symptoms with no hope of treatment. Seriously hinders my emjoyment of life, and quite honestly I was wounded by her attitude today. I had seen her as a partner in my care but she really upset me today.

She told me to look up something, I'm pretty sure it was Interstitial cystitis, but was so frustrated I can't be sure. Looking it up it makes sense, but also makes me angry. Yet another "disorder" to blame on a mysterious autoimmune issue.

It makes me think though. So many of my health concerns can be classified under a possible autoimmune disorder including my migraines. I know some of you also have other issues going on and I'm hoping someone has a clue on where to go from here. If not, I'm just hoping to find some support for yet another frustrating and painful condition.

Any takers?
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Re: Interstitial cystitis...any migraine connection?

Post  Cluelesskitty on Sat 10 Mar 2012, 1:21 am

Fot the last year I've came in with the same UTI symptoms but my dip sticks always come up negative for a UTI.

First, I am so sorry you are being treated in such unfeeling way. Second, I don't believe dip stick at the office is
a sure way to diagnose UTI. I believe you should be referred for full urine panel whatever it is.
Two weeks bacterial and other culture growth test, leukocytes and the works.

While I was in PL I did just that, and while I had no harmful bacteria growing after two weeks time,
the test did show I have a leuco present which indicated an old, chronic bladder infection existing.
I got an antibiotic to take for two weeks, along with some antifungal medication to prevent a yeast overgrowth.

I felt so much better.

so - so much for a dip stick test :/

I've heard of IC, but I am not sure what to make of it. I think it's pretty safe to conclude it is another "bull Dx"
along with IBS and rebound headaches that doctors came up when they don't know what the heck is going on.

I tried to find underlying cause for UTI and holey moley, the list is long!
http://www.rightdiagnosis.com/u/urinary_tract_infections/causes.htm#causeslist
hope you'll find it useful.

I really hope Milo you'll find a way to get more through tests for your UTI most of all.


Risa

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Re: Interstitial cystitis...any migraine connection?

Post  milo on Sat 10 Mar 2012, 12:29 pm

Thanks Clueless.

I've been doing some more digging about autoimmune disorders.

I have had these symptoms for decades:

periods of extreme fatigue
muscle and joint pain
insomnia
low blood pressure
allergies
periods of brain fog
migraines
chronic fever of unknown cause
multiple gyn issues like edometiriosis and polycysts
restless legs (really bad episodes)
general weakness
ongoing GI Issues
dizzy spells

I'm so sick of dealing with being sick. I just want to feel "normal". Sad
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Re: Interstitial cystitis...any migraine connection?

Post  tortoisegirl on Sat 10 Mar 2012, 5:45 pm

Although I don't have migraine, I have a similar continuous headache condition (NDPH). I also have the related conditions, currently diagnosed as fibro, IBS-C, Small Intestine Bacterial Overgrowth (SIBO), unspecified auto immune, eczema, bladder pressure most similar to IC, and a lot more. I definitely think there is some connection in all this and there doctors which say the same thing. But, not much can be done except treat the symptoms.

I do think IBS, fibro, and IC are real, but they shouldn't be used as a jump to conclusions bucket diagnosis as they sometimes are. I would get a urine panel done to rule out that you have an infection this time. Both bladder/urinary infections and IC are types of cystitis, but the difference is infection or not. Then, seek out a good urologist.

I also have the crazy list of symptoms and diagnoses and have gone basically nowhere on the doctor merry go round. Best I can do is treat my worst symptoms. They weren't able to offer me much for my bladder symptom. Mine is basically that it feels like I have to pee all the time...worst right after I go, then it actually gets better as my bladder is full (more like regular full bladder feeling). At night it really bothers me since I have trouble falling asleep when I feel like I have to pee. Trying to go usually makes it worse, although sometimes I do find 10 minutes after going I have a surprising amount.

I have almost thought there might be some kind of physical cause such as my bowels getting my bladder in a weird place? Don't know how they test that. At first I had convinced myself it must be a fibroid or cyst or something (that was my gyn's first thought and it made more since to me), but the uro didn't even want to appease me with an ultrasound since he said it would be obvious from a physical exam, and after this period of time, would be even more obvious (bulge, pain, ruptured, etc).

I have no other symptoms so the doctors I saw didn't want to say it was IC, but its most similar to that. They offered me a bunch of invasive and expensive tests, warning they likely would not help in diagnosis/treatment. I opted not to do them. My bladder pressure started when I was on antibiotics for my SIBO and seems to get worse each time I have to take them.

I definitely believe the doctor who said he thought my bladder thing was auto immune related. Everything in my health seems to point to that, but I don't have any blood results that do (ANA remains negative), and no definite diagnosis can be made. More of a wait and see thing. My mom also has everything going on with her point to auto immune, and basically everything wrong with her under the sun (but she has some actual auto immune diagnoses such as Lupus). I seem to be following in her health path, although I started much earlier (19 instead of 36). I'm scared how I'll be 20 years down the road if I'm so bad off at 26. They offered a couple meds to me for the bladder but they didn't seem like something that would help, or its something I didn't tolerate before for my headache (such as an anti depressant, which can have pain properties for the bladder).

Annoying but I can live with it. IC can range from annoying to debilitating for different folks. There are quite a few treatment options...I just chose not to go that route, at least not yet. Antibiotics can briefly help IC but since there isn't an infection, it comes right back. Frequent unnecessary antibiotics can just cause other problems. I can so relate on the leaving the doctor's office in tears. I do that way too often. I get my hopes up that the doctor will have some answers for me and it all gets shot down.

I just get pushed off onto another doctor, told they don't have any ideas, told something I know is wrong, etc. I've been trying to find some sort of auto immune specialist to tie this all together, but even then, I just don't think there is some miracle answer. I just continue to treat my symptoms and live a pretty miserable life. Trying really hard to focus on the positive and that it could be much worse, but its very tough. Hang in there! Best wishes.

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Re: Interstitial cystitis...any migraine connection?

Post  marion on Sun 11 Mar 2012, 8:26 pm

Yes Tortoise girl catching the ANA is a joke.

My doctor last week has finally committed to "mixed connective tissue disorder" which is a bit of lupus, polymyitits and other auto immune disorders. I have still to catch a high ana, but the symptoms are all there. I'm lucky I have rashes (is lucky the right word there?) and have pains in the right places. It still took 20 odd years to get to having a name though.

So Milo check out the mctd and undifferentiated connective tissue disorder (when your particular brew of different autoimmune problems doesn't have its own name.) You'll be there I'm guessing.

Mctd or uctd sound very boring names - oh but they aren't. Science isn't really up there on autoimmune and only very recently it is being recognised for the damage it does and the increase in people being affected. Your doctor may not even know the terms.

The ana positive is the trick. Have the blood test form in your bag. And on the day you wake up aching from top to toe, maybe a rash or two, pee the wrong colour - as much as possible happening - that appartently is the day to do the test.

Be interesting to hear what you think after you google the terms.


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Re: Interstitial cystitis...any migraine connection?

Post  milo on Mon 12 Mar 2012, 6:45 pm

Thanks all, I may have found a partial cause, though just for the more recent bad turn. While looking things up I saw that environmental factors can trigger autoimmune disorders. I've led a full life and had a lot of environmental exposures (lot of thrisd world travels and extended periods on farms). But it made me think about mold so I searched through the house. I live in a very damp area of the world.

I cleaned up some black mold a few weeks back from the window sill. I was careful and used gloves but no mask. But yesterday I found a whole new problem. About six months ago we discovered mold under our bed. We did a very big clean up and considered it solved. (head in the sand syndrome) Well yesterday I took a closer look, desperate for a cause for my recent distress. The bed is on a metal frame with wooden slats. The wooden slats are FULL of mold! Like, FULL of it. I had put one of my artwork under the bed a few weeks ago and it was also covered in mold too.

I was at a total loss as to what to do. For people like us, mold is very dangerous. The bigger problem is we don't know where it's coming from. We also don't know what to do with it. I ended up doing the wrong thing and did a clean-up using the vaccume. STUPID thing to do. I wasn't thinking. I had gloves on but didn't put on a mask. I also didn't take pictures (except one).

The mold is very clearly feeding off of organic matter, particularly wood. It was mostly powdery, white, gray, blueish and green. On the artwork (I sometimes use organic materials to create texture) it was white, fluffy looking mold.

I have no idea what to do about it. I did a clean up but it was topical. We can't just buy a new bed frame because we don't know if it's coming from the laminate or not. I think it may actually be from the bedframe itself but can't be sure.

I've been so sick since the clean up. I missed work today (which I rarely ever do).

I have not been able to do much research today because I feel so crappy. I'm almost wondering about some type of paint to seal the wood. If we can identify the source we can get rid of it and buy new furniture. Thankfully the very expensive mattress has a very expensive mattress cover on it which has protected the mattress (and probably us too)

Gosh, all I know is that it needs to be dealt with very quickly and quietly. Any ideas or suggestions are greatly welcome.
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Re: Interstitial cystitis...any migraine connection?

Post  Cluelesskitty on Mon 12 Mar 2012, 6:54 pm

Oh, no, I've heard the mold can be a very serious health issue.

I think once it gets inside the porous stuff, it's practically impossible to remove.
You would either have to thoroughly freeze it off or heat it off to kill the mold??

I don't know how could you attempt that with a bed? But I am not 100% sure, so ask someone else.

I was thinking maybe it would be better to buy a new bed frame ?
I don't like a metal bed frames on the account the frame is cold to the touch,
but perhaps it is safer and easier to clean than the wooden one, then?

Risa



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Re: Interstitial cystitis...any migraine connection?

Post  milo on Mon 12 Mar 2012, 7:17 pm

It's complicated, as we don't have a box frame, and if we buy one along with a new bed freame, it can just pick up the mold as well. We need to find the source in order to know. Our first thought was to just go buy a new one...but it will be about 500.00 bucks and a good chance that the mold will just start up on the new frame. A new one will be coming, we just need to figure things out first so we don't make a pricey mistake.

It's very possible that the urinary symptoms are directly connected.

We put laminate in a ways back, I'm torn between whether it's coming from the bedframe or from the laminate. The top of the laminate doesn't show it, but the edges do. So hard to determine.

My symptoms today are way worse, so it could be the mold making me feel so sick as I'm sure I breathed in a tonne of it while attempting a clean up yesterday.
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Re: Interstitial cystitis...any migraine connection?

Post  marion on Mon 12 Mar 2012, 8:15 pm

Milo

With your mould I can suggest white vinegar and bicarbonate soda for a health friendly clean up. Or if the mould is stubborn an industrial strenght bleach - don't you do this though, let some one else choke.

We are semi-tropical and with the continuous rain we have had the last few years, for the first time in 20 years we are getting mould too. Spotted some on the dining room chairs the other day - timber chairs too which are varnished, so don't know that varnish makes a difference.

Think this might be a cause of your latest bouts though. Some things just seem to such huge triggers and I think mould is one of them.

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Re: Interstitial cystitis...any migraine connection?

Post  Porsche Fan on Tue 13 Mar 2012, 12:25 am

sorry, late to the game.

i think of course a constant state of inflammation makes things worse but it is hard to one find and identify an auto-immune disorder, then 2nd, tie it to another problem.

i understand the mold thing--that can make you extremely sick. i bought a brand new car (you would be surpirsed what company made it) and it made me sick with a sever mold reaction. this was a brand new car, with mold! i had two testing labs test the car. it was bought back but my docs identified me as having a toxic reaction to mold.

nasty stuff. please be careful and wishing you the best!
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Re: Interstitial cystitis...any migraine connection?

Post  Paradox on Thu 15 Mar 2012, 8:32 am

Milo, this isn't the first time I've seen IC brought up. I have many of the same symptoms....have all my life, yet usually just test for "a little bit" of bacteria.

Interesting connection, if it truly is one. The fatique can be from getting up all night thinking you have to go to the bathroom. Some can easily relate to others. But my mother had some type of undiagnosed autoimmune and she had the migraines too.

I'm sorry sweetie.
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