Ending 2010: Deflation #reverb10

Well, it is the New Year.  I admittedly threw over the final set of prompts.  I was tired of their sameness, and while self-reflection is good, this exercise was beginning to strike me more as self-absorption.

The year ended with a completely crushing disappointment for me.  Atenolol, the medication to which I switched two weeks ago in my attempt to control my migraines, started causing side effects that were intolerable, and/or precursors of more severe side effects.  I left a message for my neurologist on Friday, Dec. 31, knowing he wasn't expected back in the office until January 4.  I knew I couldn't stop this medication cold turkey without endangering myself, so I thought I would have to wait until Tuesday, and just cope with the side effects, making sure they did not take a turn for the worse.

So I was surprised that he called me at 9:30 PM on New Year's Eve; perhaps he was the Neurologist On-Call for the evening, but he uncharacteristically checked his messages on a Friday.  He told me to titrate of the atenolol.  I already had an appointment scheduled for mid-February, but I said to him I guessed I should reschedule the appointment for an earlier date.  He began to hem and haw a little, and said something like, "I am always glad to see you, we can talk about the frequency of your headaches.   I really think you should go back on Depakote in the fall."  First of all, no.   I will not go back on Depakote, and I have told him that repeatedly.   But his message was clear.  There is nothing else left in his pharmacological arsenal for me to try.

I had thought I was going to try the SSRI Cymbalta, until my psychiatrist nixed it, seemingly out of nowhere.  He is now adamantly opposed to my using it, even though he told me in early May that the dose of Cymbalta used for migraine were so tiny that it would have no activating effect on my mood.  SSRIs are generally no-nos for bipolar people, which was the whole point of that visit, to see if he thought I could handle it.  I have in my notes that he said I could.  He either changed his mind, or forgot, but it made me feel foolish.  I really don't like to give the impression that I am pushing around my doctors (not that it doesn't happen).  But this time I really wasn't, I was suggesting a medication that I have a record of his permitting.

But the long and short of it is, I have reached the end of the medication merry-go-round.  With SSRIs eliminated, there is no other class of medication left to try as prophylaxis.  I am now officially reliant solely on OTC analgesics, sumatriptan, and medical cannabis.  As far as my neurologist is concerned, I can visit him sooner, or I can visit him later, there is nothing more he can do.  I am going to beg and plead for a referral to the UCSF Headache Clinic. I have no idea if they have anything to offer, but they are the West Coast center for people like me.

Planner that I am, I already have contingency plans in case the UCSF Clinic, to which I have not yet been referred, is unable to help me.

So yeah.  Way to end 2010.

Which just puts me in a morose mood for all of the challenges we already know we must face in 2011.  I have foot surgery again.  Then my husband has brain surgery.  And at some point in 2011, I need to get over to Berkeley medical school, to have an eye I am losing vision in examined, and treated.

If all those events go smoothly, 2011 holds a lot of promise.  But it also holds a lot of pitfalls.  It seems as if the entire duration of my relationship with DH has been stumbling from one drama to the next.  Our health issues have definitely meant there are dimensions to cope with beyond the usual loving and cherishing we would naturally provide each other:  There is frustration and fear, for starters.

I burnt a candle on the Solstice, and again on the New Year, to send up all the bad vibrations and echoes of 2010 into the ether.  I have my superstitions.  Although if you ask me, I'll admit, I don't truly believe in them.  But I like rituals, and superstitions are ripe for ritual.   Rituals give me a false sense of control that is comforting, in spite of my knowing I am fooling myself.

2011 is also the Chinese year of the Rabbit, which is my birth sign.  I turn 48.   I fall under the water element, and am supposed to have a good career year.  That would be nice for a change.

I know good things are in store, too.  I am looking forward to further involvement in the Medical Cannabis community.  Our tenth wedding anniversary is a huge milestone for us.  And my third Oregon Country Fair is another anniversary of sorts.  My French Bulldog Violet turned 7 on New Year's day, which is always auspicious.

Now if I could just locate my wallet....

Out of Wisdom Comes Pain and Lust #reverb10

Dec 10 prompt:

Wisdom. What was the wisest decision you made this year, and how did it play out?  -Susannah Conway

The wisest decision I made this year has lead to literally days of pain.  But it was still the right choice for my marriage, and I am glad I made it.

As a chronic migraneur, I am always on multiple medications.  This is in addition to my psychiatric treatments, although the medications for mental illness and neurological disorders share a huge overlap.  Sometimes, I find meds that work to lower the frequency of my headaches.  Unfortunately, once a headache arrives, treatments, even opiates, are hit and miss.

I am not going to go into a long discussion about all my treatments, but one in particular has worked for me on a number of occasions for a few years at a time before pooping out on me:  the anti-convulsant, Depakote.  After several year long "vacations" from Depakote on other medications, I would repeatedly find myself saying to my neurologist that I wanted to try it again. It would always improve the frequency of headaches for a while, then once again poop out.  But when it worked, it was the best medication I had tried.  

Besides the issue of repeatedly pooping out on me, Depakote can cause severe side effects. Excessive weight gain is the most infamous one.   My experience has been a little less straight-forward, but ultimately ended with impressive weight gain.    Depakote can suddenly, after working well for years, destroy one's pancreas, and make one a Type I diabetic.   It can cause severe liver damage.

But the side effect that became the most instrusive and upsetting was that Depakote totally killed my libido stone dead.  I didn't like to even be touched, although of course I was more tolerant of DH's touch than anyone else's.   Still, "wrapped in cotton wool" and "bound in plastic wrap" are the phrases he has used over and over to describe what I was like on Depakote.

People may realize that headaches are incapacitating, but they often do not realize how incapacitating drug side effects can be.  The side effects of the medication become just one more aspect of being chronically ill.  Deciding what side effects you can tolerate, or are willing to put up with, always requires a risk/benefit analaysis.

By February of 2010, given my headaches, medication side-effects, and foot surgery, sex was almost non-existant in our marriage.  Like many people, early in our relationship, sex had been a constant.  But over 10+ years, my headaches have gotten more frequent and harder to treat.  So not tonight, dear.  And then the medication I took destroyed any interest I had at all.  I felt obliged to be active as much as I could, but it was so hard.  I knew DH was torn, he didn't want me to be in pain.  But man, did he hate Depakote.

After watching my husband's misery, I decided that for the sake of our marriage, I would never again take Depakote, even though it still is the medication that has worked best for me in terms of my headaches.  I had begun to feel like I wasn't upholding my end of the marriage.  I am not saying that there is a quid pro quo for sex, but sex is a very important part of a marriage, there is no denying it.  People who know me know that I do not generally talk about my sex life with anyone, but this is not about sex as an explicit act, but instead as a component of married life.  It is upsetting and humiliating to not be as sexually available to your partner as you would like, and feel s/he deserves.

Since we were together 24/7 throughout most of 2010, we were able to delve into this issue in detail, and re-evaluate what our expectations were for each other in this marriage, and check to see that we were still on the same page.  I knew intellectually I wanted to be on the same emotional page as DH, but I just couldn't do it with the chemical chastity belt that Depakote had become.  Most Drs. consider this a completely valid reason for discontinuing a medication, so I knew my neurologist would accept it.  My neurologist is as desperate and clueless about what to do next as I am, and allows me to largely direct my own treatment.  The fact that Depakote is also used for psychiatric treatment of bipolar illness means that my psychiatrist must also be kept on top of what is going on, but Depakote has never had a psychiatric effect for me, and he allows me to raise it and lower it without consulting him first.

Plus I was beginning to wonder whether or not it wasn't already pooping out, anyway.  My headaches were definitely becoming more frequent.

So in June, with the Dr.'s blessing, I began to titrate (that is, change the dosage little by little, to allow my body time to adjust) off the Depakote, and titrate onto blood pressure medication, propranolol, that is also widely used as migraine prophylaxis.  You must always titrate off of anti-seizure medications, or you risk having severe seizures, even if you weren't taking them for seizures in the first place.

I immediately made the rather depressing discovery that yes, in fact, the Depakote was helping.  My headaches increased in frequency and severity the lower my dosage went.  I was prepared for a bad period, there is often a short period where everything gets much much worse when you are titrating onto a medication, even if it ultimately proves successful.  But the bad period didn't end.

And now, I am Depakote free.  I am having headaches more days than not, and this has been the case since July.  At first, while almost daily, they often were not severe, or only lasted a few hours.  The further in time I moved forward from my last dose of Depakote, the more severe the headaches have become.  And they continue to be present more days than not.  The propranolol has been a bust.  In January I will be trying another medication for the first time, the SSRI Cymbalta.  When used for migraines, the dose is so comparatively tiny, there is no real concern of its cross-reacting with my psychiatric medications.

But even with the failure of the propranolol, it has been totally worth it.  I knew that even as I huddled over a waste-basket, heaving for hours on end on Wednesday night, head pounding, eyes streaming with tears.  

Of course, when I am curled up in pain, I am not exactly the most sexual creature.  But when I am pain free these days, I now realize it was if my entire sense of touch had been severely dampened.  The fact that I can tolerate DH's arms around me while I am sick, and enjoy them when I am not, is a shockingly huge and happy change for both of us.  While I am sick too often these days to speak honestly about second honeymoons, we are definitely both feeling a renewed sense of enjoyment and emotional intimacy.  And when I am feeling well, well, I'll be gross, and admit sex is so much better!  Sex actually felt like a chore on Depakote.

So those are my early unexpected gifts for our 10th wedding anniversary this July:  Accepting pain, and regaining intimacy.