Saturday, March 10, 2018

Medication interactions

Apparently estrogen can decrease the amount of lamotrigine in the bloodstream.  Lamotrigine is the linchpin of my bipolar treatment.  Lithium does this happy little dance to clear away the clouds, and diazepam runs to the rescue when my anxiety gets bad.  But without lamotrigine, everything collapses.

So, goodbye birth control.

I started it up again about six weeks ago and have felt increasingly worse.  At first, I thought it was normal aberration, maybe seasonal.  But the past week, the bipolar cycling has become obvious.  The only times I've cycled like this while on my current med combo are under extreme stress.  The cycling doesn't start up because it's February, and it doesn't start up because I am worried about a medical procedure.

I called the psychiatrist on call today to confirm that the birth control could be the problem.  Why my gynecologist didn't bring it up, I have no idea.  Maybe it isn't on his radar.  Maybe they are more worried about which medications can interfere with birth control and cause babies instead of what birth control can do to people who are on medications for bipolar disorder or epilepsy.

I really hate everything right now, especially myself, and I'm trying to remember that this is a mental state, not the truth.  Just get through today, get through the next few days, and the lamotrigine will be at the proper level soon.  If I'm not too far down the path of bipolar episode, I should come out of this without having to change my medications further.

Thankfully, I was just on birth control for birth control, and there are options that don't involve estrogen.

Pelvic pain data: the birth control I was taking (levonorgestrel and ethinyl estradiol... no brand name provided on this packaging, though there are many) didn't cause me more pain, but it did cause me to pee more.  That was my experience when I was on it before, too.  That time, I didn't note changes in my mood, but it's also possible I was in a rocky place at that point and wouldn't have been able to note changes anyway.

So, of course, when I started Vesicare, intended to treat urinary urgency and frequency, at the same time I started birth control... that was poor science.

Now to figure out how to be okay with the minutes I am in.

Wednesday, February 28, 2018

Trapped in the Vestibule

Lying here in bed, my eyes started doing that flicker thing they do when I'm forcing them to read but it's time to sleep. So I closed my Kindle and rolled over. But my heart is beating much faster than normal, maybe twice as fast, and I wondered if it's one of my medications or just what I ate for dinner. And then I realized that all my thoughts of suicide come out of thoughts of confinement to this pain.

During my time in college, three people who attended my school killed themselves. That is a lot, but it's especially a lot on a campus of 1,200. It was awful, and it shook everyone up. I was in the throes of my own depression, and I remember many times thinking, "At least I've never been suicidal."

I don't remember when the thoughts started, so I can't say for sure they were at bay until the pain came around. I think maybe my depression ramped up over time not in degree but in despair -- the more it seemed it would never go away, the more killing myself seemed reasonable. So I probably had suicidal thoughts before my pelvic pain started.

But eleven years into pelvic pain, I'm pretty sure if I didn't have the pain, I'd have a solid handle on the depression and anxiety by now. There are so many ways that I've grown in this time and so many things I've learned that would've made my early years easier. If I were only dealing with the one illness, it wouldn't rule my world.

All of my meltdowns have had to do with the pain. The summer I left grad school -- I left because of the stress of the pain. Americorps -- left for the same reason. 2014's agoraphobia came after months of failed treatments. 2016's outpatient therapy came after months of fantasizing about walking off a cliff.

And these thoughts that come into my head, thoughts I won't even write down -- I wonder how many of them follow thoughts about the pain.

I'm thinking most do. Almost all.

It's a maddening life. And then I feel guilty for thinking it is so bad. There is so much worse.

Then I think, well, imagine being made to sit on a hot iron without an end in sight. That would be a pretty horrible life.

Or a bed of nails. Or an acid bath.

At least the pain shapeshifts?

Of course I feel trapped. Of course I think of dying. That is to be alive and in pain.

I have news, but sharing it so far into a mournful post -- well, so I am disorganized.

March 23rd I go in for a bladder distention under anesthesia. The doctor will fill my bladder with water and expand it, a procedure that can lessen the pain for a few months. He will also do trigger-point injections, nerve blocks from inside the vagina. And he'll take a biopsy if anything that looks problematic.

At my last appointment, I told him I'm not convinced I have interstitial cystitis. He said, does your pain increase as your bladder fills? I said yes. He said that's all that needs to exist to diagnose painful bladder syndrome. Interstitial cystitis is a debated condition in the field of urology, but we can at least be sure I have PBS, and that's all we need to know to move forward with treatments.

At that appointment, the doctor also explained that some people think IC/PBS is an allergy. I may have mentioned before that I noticed a benefit from taking Zyrtec during the season for seasonal allergies. I generally only have to take it for a couple weeks, and even then I muscle through a lot, so I never had a real experiment with Zyrtec confirming that it helps. I started myself on it daily and wouldn't you know, so long as I'm not flaring, it takes the edge off my pain. I've gotten an allergy test before with 100% negative results. All I know I'm allergic to besides the seasons is bee stings. But maybe it's time for another test. I think people can be allergic to sugar, and my bladder hates sugar...

So I will end this post now and try to sleep. Maybe my heart has slowed. Before bed, it would sometimes dip below 50 beats per minute. Right now it is at 80. Maybe it is something I ate and not one of my many medications, all of which I will try to forget about for the night.

Sunday, October 15, 2017


I had to go off Elmiron over the summer for other medical reasons.  I started it back up again several weeks ago and haven't seen the benefit like I did before.  Maybe it hasn't kicked in yet.

I'm in a relationship and on birth control.  Birth control has been linked to pelvic pain, but usually to its onset, not its worsening mid-condition.  Still, I don't trust it.

My pain isn't really worse -- it just hasn't gotten better with Elmiron like it did last spring.  I blame myself for not taking it regularly enough, and surely I was not taking it exactly as prescribed while I was working all kinds of hours during the Indians' baseball season.  But I doubt I've been taking it any more inexactly than in the spring.

Here's the thing.  I'm up in the predawn hours because I got up to go to the bathroom and peeing felt like being ripped in half.  Which is normal.  And I lay in bed waiting for the pain to subside, but I didn't doze off again like I usually would.  Instead my feelings got hurt.

Penelope Trunk wrote in a recent blog post, "When you are living a nightmare you can't process.  You are just surviving."  When I read that, I wondered if my life counts as a nightmare.  She was talking about childhood abuse.  This is not that.

But tonight I thought of how when my pain is distressing, my mind jumps to rigging my neck to something and kicking over the chair.  Then I thought, well, that's probably a thought habit.  That's not a nightmare.

I have a thought habit I prefer for its impossibility.  The earth falls away before my feet.  I can step off without waiting, without preparing.  Preferably I'd replace the other habit with this one, but they pop up in different circumstances.  When I'm sitting still waiting out pain, it's my neck.  When I'm moving around walking through pain, it's the cliff.

I haven't killed myself yet so I figure I probably won't.  But I couldn't hold judgment against anyone who did, and people do.

I think I'm too much of a coward to kill myself.  But when you cross from this space to the other one, fear is a different thing.

Last fall I crossed to that other space, and I stayed with my parents and attended therapy five days a week for two months.  I put myself in a safe space.  I'm still here.

Here at five in the morning, I see the reasons for living.  I am not in constant emotional torture.  People at my current job speak of me as a Pollyanna.  Maybe that is relative.  It's certainly learned.  I hope it's true and not compensatory.

I would just like some progress.  Some degree.  If urination could not feel destructive.  If I could forget about my pain for stretches of the day.

Why am I a miserable character?  This pain has hurt so many people in my life.  The thought of my grandmas worrying about me.  I will likely see the sunrise today.

Tuesday, May 23, 2017

Elmiron is working and I've become a crybaby

I'm back on Elmiron, the only med approved by the FDA to treat interstitial cystitis.  I'm one of the lucky people who sees an effect on my pain from Elmiron very early.  Within two weeks, my pain is lower.  Sometimes it takes people months to see a difference.

My pain often gets very low on Elmiron.  When I eat something bad, my pain shoots up, so I have greater incentive to eat well -- instead of feeling bad all the time, I now feel bad only after eating something that triggers my pain.

Which has made me into a crybaby.  When my pain goes up to what was before an ever-constant level 5 or more, I CAN'T BELIEVE HOW MUCH PAIN I'M IN!  How can anyone live this way????  This is ridiculous!!!  How am I supposed to move?  I need to stop.  This is an emergency.  I have to lie down.  I need ice.  I need painkillers.  Etc.

Which in turn gives me respect for the living I've done with this pain for more than ten years.  I got used to the pain being bad to the point where I didn't realize how bad it was.  It was bad!!!!  Wow!!!!!!!!!!!!!!!!!

That's all.

Saturday, November 5, 2016

How I got confirmation of, if it makes sense, PTSD

In September this year I got extremely depressed.  I started staying with my parents because I didn't feel safe alone.  I expected the depression to lift in a few days but it didn't.  Then a few weeks, but no.  So my therapist and I agreed I should do an intensive outpatient therapy program, group therapy for three hours Monday through Friday.  I've been doing that for a little over three weeks now.

I feel better.  I'm on a new med and I'm on higher doses of my old meds.  I've worked through a lot in therapy.  It's the kind of stuff any person could use but that you don't realize is missing until all your usual tools for getting through life are gone.  It's like we're all carrying around our lives in boxes, keeping everything together, and then you get depressed and those boxes disappear.  And you realize how disordered and imbalanced and incompetent we all are.  And you can't swap in new boxes because depression won't let you, so you have to figure out how to organize yourself and your life in a way that you can carry it all without a box.  If that makes sense.  That's the best I've got so far in explaining the intensive outpatient program.

My therapist thought some of my anxiety might be due to epilepsy or migraines because some of it seems neurological, not psychological -- feeling like I'm lying down when I'm not, for example.  There were times when I literally felt like I didn't have a head.  But my psychiatrist and the psychiatrist who oversees IOP agree that these moments, which include moments of extreme terror, are not neurological but are instead dissociation, derealization, depersonalization.

I never understood my psychiatrist's terming this experience "dissociation."  To me, dissociation is the mind separating from the body in order to cope with trauma.  I have no trauma to point to.  So I said as much to the psychiatrist attached to the outpatient program, and he said there doesn't need to be a traumatic trigger -- sometimes the trigger is extreme anxiety.  But as we spoke about it, I came up with, "I don't know if this makes sense, but with the pain, I find I go through tiny little PTSD events, terrified of peeing, of setting the pain off, of" -- okay, I can't write this out now.  I need the compartment I'm in right now.

But the psychiatrist agreed with me.  I needed to hear that my PTSD explanation makes sense.

That my terror might be neurologically based was both frustrating -- another health problem -- and possible relief -- there's nothing inside me that will break from it; it is just an illusion.  That the terror is probably psychological is not the most welcome conclusion.  I do feel like the terror will break me someday.  It has, actually -- I spent a month confined to the house due to agoraphobia, unable even to get the mail because the world would start tipping sideways when I did.  To fear that it will break me again is normal, I tell myself.  But that doesn't allay my fear.

I wish I were better able to explain the continuous tiny PTSD the pain brings.  All I can say now is that I can't believe this is my life.  I'm staying with my parents because I don't want to see my future.  I had depression and anxiety before the pain, but I believe I would've stabilized and gotten better without the pain.  The pain is a monster.  It is trying to kill me.  I am trying to ignore it.  I'm doing it for the people I love because on a personal level, I can't defend this life.

I am safe.  I am okay.  I am in therapy five days a week and it is helping.  I'm focusing on the present because the future is blank.  I can't believe I've made it this far without collapsing.  It used to give me hope, a sense of pride, something or other to look at myself and see how strong I have been.  Now all of that doesn't matter.  What has it gotten me?  Here I sit, in pain.

Monday, May 16, 2016

Proven: I have interstitial cystitis

I have interstitial cystitis. A new doctor put me on Elmiron, an IC med, and my pain dips to a point where I can hardly tell it's there at the end of some days. Sometimes it dips below a 2 in the middle of the day. This has never, ever happened before. The closest I got was when I was able to control my diet at an insane level when I was in grad school seven years ago. I've been on Elmiron several weeks now and I've reached the point where I can blog about the improvement with almost complete confidence that I have interstitial cystitis.

I've always thought I had IC but I've never been able to get a diagnosis. Even urologists wouldn't diagnose me with it because I rarely have the typical urgency and frequency. But I believed I had it because food is the main variable that influences my pain. If my pain were neurological or muscular, food would not have such influence over it.

I went to a new doctor, a gynecologist, who put me on a topical steroid, an estrogen suppository, and Elmiron. The steroid, even compounded, made my skin bubble. The suppository -- she says it's impossible, but I had the most painful lead-up to my period that I've ever had. The acid burn that is usually contained to my vulva spread up my abdomen. I could hardly walk. Maybe that was coincidence, but my period is due tomorrow and my pain hasn't risen above a 5 yet in the lead-up, and it certainly hasn't spread. (5 is average.)

She's the first doctor, though, who thought I had enough of a chance of having interstitial cystitis that I might benefit from Elmiron. Why it took me nine and a half years to stumble across a doctor who would try me on an IC med, I have no idea. Telling her how much food influences my pain was all it took. Bam -- let's try Elmiron.

Today I saw a therapist who specializes in helping women with these kinds of issues. My doctor recommended I see him. I'm glad I did. I'm so angry. I feel like I had ten years cut right out of the middle of my life. I feel robbed. I feel empty. I don't even know what I need to address in therapy. My feelings are giant but vague.

One thing I learned today is that I have to come to terms with eating things that hurt me. Eating them knowing they might hurt me. Hurting myself. The Herculean charge of eating perfectly to appease my bladder, and failing at it.

I'd always fantasized about writing this post, the one where I have all the answers. I am not in the state I thought I'd be. I'm more depressed, more anxious than my baseline. My cat died at the end of March, but I think I'm depressed and anxious beyond the grief of losing her. I can't tell why. So I can't come here and celebrate. I came here to write to you who might need the answer I've found.

If my pain continues to recede, I'm going to go away for a week by myself and be alone with the knowledge that yes, the day did arrive.

Thursday, December 17, 2015

New pelvic pain article, best yet

My cousin linked me to this article about pelvic pain.  It is the best I've read yet on pelvic pain but reading about pelvic pain always stresses me out and now I'm having a minor panic attack.  Deep breaths...

So tired of this.  Meaningless to say "so tired" after more than nine years.  Amazing I can even feel that I'm tired of this.  I must remember what it's like not to be in pain all the time.