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If it's not one thing...

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  • If it's not one thing...

    ...Oh, whining is so cathartic sometimes!

    My IC has settled down nicely since the hydro last month. I truly did not realize how much pain I was in, until I wasn't anymore. I still have occasional (like, two or three times a WEEK) moments of discomfort, or feeling "full" but for the most part, I'm pretty much like a normal person! I can go 2-3hrs without peeing, which I realize isn't still totally normal, but it's sooo much better that I'm very satisfied.

    HOWEVER, I still have my week-long attacks of cluster migraines that hit every single month in the days leading up to & during my period. IT IS SUCH BU!!**** excuse my french but it is!!! I honestly think the reason I dealt with the IC pain so well, and passed a kidney stone at home, and managed through natural childbirth, is because I'VE BEEN IN PAIN MY WHOLE STUPID LIFE.

    Cluster migraines are the most miserable pain ever. EVER. And I get them every. single. month.

    Why the heck am I dealing with all this?? I'm twenty-stinkin-nine. I've been in a very abusive relationship, lived in a battered women's shelter w a 3yo and a newborn, got remarried, only to have HIM have a stinking brain tumor & even though he came through it "mostly" ok, boy that sure wrecks a marriage, my D10 had Lyme Disease & now has arthritis in one knee from it, I have cluster migraines and IC and on/off phases of IBS... It's just SO FRUSTRATING I feel like there's a list of Bad Things that happen in a normal life, and usually God assigns ONE thing from the list per person, and instead I got the whole stupid list (well, me & my family who I have to take care of & suffer with).

    I take Maxalt for the cluster migraines, but you're only supposed to take 3 in 24 hrs, and since my clusters last a week, well, let's just say I've taken FIVE in the past 24hrs and I usually end up taking 8-10 over 3-5days. Taking waay more than the recommended dose shreds my stomach, so even without IC bloat, I look 5mo pregnant bc I'm bloated from all the Maxalt, and I'm running to the bathroom every hour bc of IBS from the Maxalt, instead of running from the IC.


    Most people really don't understand! I know it seems like the only time I come on here is to whine, but I don't whine or complain at ALL in "real life" and I've never had somewhere to go to let it all out before, so I keep coming here! At least you girls & guys can literally feel the pain, as it seems migraines & IC often come in one big ugly package.

  • #2
    Vent as much as you want!! You deserve to! Thinking of you and sending you lots of positive energy and hugs


    • #3

      I have never had a migraine, but my husband suffers from Migrains and cluster headaches as well. He has tried lots of different meds, but the one he loves the most which works like clockwork is oxygen. Yep, we had oxygen delivered to the house, and when they begin now, he turns it on and breathes for about 5 minutes. Sometimes he has to do it 3 or 4 times, but it knocks it out completely. Because our insurance wanted to charge us for rental of the regulator and oxygen cart, we purchased our own, so now we are only charged for the oxygen refills.

      Oxygen has changed his life forever!


      Current Treatment:

      IC diet (food that turns alkaline through digestion, not food from the acid/alkaline list), 2 cups of warm lemon water every morning (juice of one lemon), Forte amino acids

      Herbs: (Now discontinued) Marshmallow root tea, grapefruit seed extract, serrapeptase, omega 3, quercetin, colostrum

      Other/Rx: (All discontinued except birth control) baking soda, Tums, oxybutynin, amitriptyline, certizine hydrochloride, Loestrine 24 Fe

      When I'm in pain: gabapentin, xanax (I have to shut the stress in my brain down), pyridium, tramadol, Prelief

      To this point, four bladder dilatations: 7/11, 12/12, 12/14, 11/16

      Tried and discontinued after 2 years: Elmiron (sad, waste of time and loss of too much hair!)