One more week....

In one week I will return to Philadelphia to the hospital for more treatment for migraines.  I just have to live with this insufferable, almost constant pain for one more week.

I guess our trip, my husband will be traveling with me, of course, will be starting early.  We'll be driving this time.  I think it's the flight home, and the migraine it triggers, that messes up any good that happens while I'm in the hospital.  So, screw that.  We'll just drive!  It should be an 18 to 20 hour trip by car, and if I get a migraine while driving, I can just take meds to knock myself out and sleep in the backseat.  At least, that's my hope.

This trip is going to be about detoxing me from the abortives and medications I am currently taking and giving me some pain relief with other meds that will abort the migraine and stop the pain.  My doctor isn't an opiate guy, so I won't be on morphine or anything like that, but he has other stuff he uses to stop the pain--and frankly I don't care what they give me as long as it works.

Now, I just have to live through this week, and the car ride to Philadelphia.  It's not that I enjoy riding in a car for 18 hours or more, I just think I have to do something to change the current pattern of go to Philadelphia, get treated with some success, fly home, get a migraine, everything return to normal, or worse!  Taking the flight out of the equation seemed the simplest thing to do.

I don't really have a strategy for making it through this week.  I've been having some decent mornings, and when I say decent I mean merely tolerable, and then by 3:30 p.m. my head is screaming at me to lay down and stop doing whatever it is I thought I could do that morning and early afternoon.  I try to hang on until 8:00 p.m. and then take my night meds.  That's just the time I set for  myself that it's reasonable to go to bed and not wake up too early with a migraine.  It's arbitrary, but it seems to work for me.  I can still sleep, er, do the thing I do that is similar to sleep, until 7:00 or 8:00 a.m.  I guess I'll keep doing that, and hope that somehow, the week passes quickly. Wish me luck.

My experience with Ketamine

I spent last week at Jefferson Medical Center in Philadelphia hooked up to an IV infusion of Ketamine to try to break the cycle of chronic migraine that I had been having.  First things first, I am not sure yet if we were successful.  I did have two mostly pain free days while in the hospital, so that was considered somewhat of a success. However, I have returned to having migraines since I have been home.  My doctors said not to be frustrated by this. They didn't expect me to not have migraines when I returned home.  I read some experiences of others in which the people undergoing Ketamine (or K as I like to call it) treatment went weeks or in some cases months without migraine, so I had my hopes set pretty high and am finding it difficult to call anything less than that a success. The truth is, I won't know for a couple of weeks, at least, until I can look back at my "new," post treatment headache pattern, if the treatment was a success.  I won't be able to tell if anything really changed until some time has passed, because right now, I find myself dwelling on every migraine, thinking "OH NO, another migraine. It's just the same as before." I need patience, and unfortunately, patience ain't my thing.

About the treatment:  It was quite interesting.  My first Facebook post of the week said something to the effect of, I know three things about K, 1) It doesn't immediately knock out a migraine, 2) it gives you raging nausea, and 3) it does NOT make you sleepy.  Though I don't remember much, I do remember the first day and night being quite rough.  I was as nauseated as I have been in quite some time.  My nurse commented that he had never seen so much come out of someone so small.  Yes--I puked A LOT.  I also didn't sleep that night.  I think I was too busy vomiting.  I had a level 5 headache entering the hospital, and it spiked to a level 9 migraine by the time they started the K, which took hours, and the K didn't take the migraine away. Luckily, they would treat me with other meds and they gave me Torodol and Zofran, Reglan, and Phenergan.  It took all 3 anti-emetics before I finally stopped throwing up.  But finally, my nausea was controlled and they kept the Torodol coming for the first few days too, so the pain dropped back to a level 5 and stayed there for a few days until I was finally pain free.  

K does a number on the brain.  I remember when I would get bored, I would just shut my eyes and watch the show.  Colors would just dance in front of my eyes and shapes and colors would just bleed into each other.  I remember one time thinking my brain was darker than I thought it would be.  The colors were much darker than I thought they should be.  I guess my brain isn't the bright, cheery place I hoped for?  I don't know what I expected.  I did some funny things.  I called people.  Drunk dialed them is more like it.  I still don't know for sure who all I called.  Evidently I have colorful language when I am high on K.  I probably owe some people some apologies for that.  And I use big words I am told.  My husband tells me I spoke to my brother on the phone one night, and immediately upon hanging up the phone, my husband asked, "So what did you talk about?" To which I replied, "I honestly couldn't tell you."  K makes you a little goofy.  I tried to remember things and not be goofy, but I have no idea if I succeeded.  I can write this because I confessed it to my husband already, but my husband's birthday occurred while I was in the hospital.  At some point, I ordered Edible Arrangements to be delivered to my room for his birthday.  I have no recollection of doing that.  But you know--SCORE!  I did not forget his birthday even in my altered state!  Still though, it's kind of scary to think of all the damage I could have done with online shopping and never even remembered.  I'm glad nothing has been delivered since we've been back home!!!

One interesting thing that happened was that when I first arrived at the hospital, I didn't have a private room. I wasn't expecting to have a roommate, so you can imagine that I wasn't thrilled to be moving into a room with another person.  My roommate and I arrived at the same time, and she had on sunglasses, so I suspected she had migraines too.  I found out she was there for her first K treatment as well.  Her husband couldn't stay with her because they had sick kids at home, so he was dropping her off, getting her settled in, and then driving home to take care of their children.  We became good friends in the few days we shared the room, before they found us private rooms.  We called it "Migraine Camp"!  As a matter of fact, when they found us private rooms, neither of us were sure we wanted to be separated.  My husband still took care of her, brought her coffee and food, and the nurses gave us reports on each other.  The nurses got a kick out of our friendship, I think.  We were very lucky and blessed to have been put together.  She was smart, fun, sassy, kind of a kindred spirit in many ways.  We texted a lot in the hospital while we were high on  K.  I haven't read those texts since I have been out yet, but I imagine they will be quite amusing.  We plan to keep in touch and have texted since we've been out of the hospital too.  

The docs sent me home with K in nasal spray form that I can use up to three days per week as needed for migraines.  I have used it twice so far, and I'm not totally impressed.  First of all, it tastes horrible and I haven't figured out how to keep it from running into my throat at least a little when I use it.  Second, it does help a little, it's quick acting, but very short lasting.  I can use it up to 10 times in a day, twice per hour, but who wants to be monitoring how many times they've used a nasal spray and counting every time their pain comes back?  I will give it some more trial runs, but I am not sure it's going to be effective as an abortive that I can use and still go about life, the way Zomig is, for instance.  I want an abortive that I can take, it reduces my pain to a level where I can function, and then I can go about my business.  If I have to take K and then snort it repeatedly, keeping count of the times I use it, with pain potentially returning between uses, it's not that kind of abortive.  

So, what do I think of the K infusion overall as a migraine treatment?  The jury is still out.  Getting me to pain free was pretty awesome, but now I just remember what that felt like and it kind of sucks that I don't feel pain free now.  For even the possibility that I might have gone weeks or months pain free, I would do it again.  So I guess that was worth it for that possibility.  And we may have changed the course of my near daily migraine that I was having beforehand.  I am just not sure yet.  But I promise to let you know....

In my head...

I'm a bit anxious today.  Today is the day I leave for Philadelphia for my ketamine treatments.  I will enter the hospital tomorrow afternoon.  I still don't know how long I'll be in the hospital or how many days of infusions I'll be having.  I think the unknown contributes to my anxiety.  I have done some more research on people's experiences with ketamine, and found many, many positive ones.  Ketamine seems to be used most often for a condition called RSD, and gets good results with that condition, but when it's used for migraines too, people usually have some relief, even if it is short-lived.  Short-lived might mean weeks and it might mean months, depending on the person.  Still though, imagine--MONTHS with NO MIGRAINE!  Then I could do it again perhaps.  People get boosters of ketamine after their initial infusions sometimes, and those don't always have to be inpatient, or maybe the at home nasal spray would give me some relief....  My mind wanders to a million possibilities.

OR, of course, this could be another in a long list of things I just don't respond to.  There's always that.

Managing expectations when you have a chronic condition is very important I have found.  Especially when you have Depression (capital D) and a chronic pain condition.  I once got my hopes up for every new medication, every new treatment, every new therapy that was suggested.  I quickly found that the letdown when they didn't work was devastating, and was almost more than I could handle.  So, my therapist and I quickly learned about managing expectations and cautious optimism.  I travel to Philadelphia today, and will enter the hospital tomorrow, cautiously optimistic.  I'm still anxious as hell because of all the unknowns and because my last hospital stay wasn't as smooth as it could have been.  But also cautiously optimistic.

I'll post as I can when this treatment is underway or over. Wish me luck!

What's next for me

So, sorry it's been awhile since I've posted.  I thought I'd take a break from the Fiscal Cliff Drama I've been watching all day and catch you up on the next big thing in migraine land for Julie.  In a little less than a week,  I'll be making the trek back up to Philadelphia for a short stay in the hospital for a Ketamine IV infusion.  Yes, I'll be in the K hole for any of you old ravers out there.  Actually, they give it in smaller doses, is my understanding, so I won't have the psychedelic-spaced-out-raving effects, but I've been told I will be in a somewhat dissociative state, or well, high.  Should be entertaining for my husband to watch.

The thinking behind using Ketamine for migraine treatment is that it does something to reset pain pathways in the brain.  I don't know how that works and I am not even going to try to go into the science of it.  Feel free to Google "Ketamine and Migraine" and plenty of information comes up though.  Do me a favor and stick to the scientific articles or people with actual experience using it with their doctor and not the random blogs with people speculating based on the time they used Ketamine at a rave in the 90's.  If Ketamine works for me in the hospital, I will come home with it in nasal spray form, so there is a modality and use for it long term.  I don't know anything about how the home use will work though.

I wish I could say I feel 100% confident about this treatment, but I'm nervous as hell about it. I have 100% confidence in the doctor who recommended this treatment.  There is no problem there.  I have been wavering back and forth between anxiety and excitement for the past few days.  I read some personal experiences where people had tremendous success with Ketamine infusions for up to four weeks at a time.  This is incredibly encouraging news!  I can't imagine feeling good for four whole weeks.  Then having the opportunity to use the home treatments and see what kind of results I could get from those?  That sounds very encouraging. So after about a five day period of freaking out, I have been very excited about the opportunity. But the freak out was rough and a small amount of that remains.  See, I have done IV infusions like this before and not responded as I was supposed to and it has been kind of torturous.  Now, maybe this is silly or just me being a wimp, but I'd rather avoid torturous situations if I have the opportunity.  So that makes me nervous.  This could be nothing like my previous experience.  I could go in, respond just as I am supposed to, Ketamine could be my miracle drug, and all be right with the world finally.  But, I could go in, hallucinate for days, have migraines that we can't treat because I can't take drugs that stray from the protocol I'm supposed to be on, and be miserable.  (That's what happened with the last IV infusion.  I hallucinated, it triggered migraines that we couldn't treat.  I couldn't sleep because of the hallucinations and pain.  It caused dizziness too on top of the migraine pain and all the pain was exacerbated by all of the other things going on.  It was misery.)

All of this may just be me borrowing worry.  After all, I have to do this.  I HAVE TO DO THIS. I trust my doctor.  I have to try everything to treat these damn migraines that have plagued me almost daily for the past 13 years. I don't really have a choice.  And, like I said, this could be it.  It could be the miracle drug that works wonders for me.  I have nothing to lose except a week or so of life that could really suck and then be done.  I can do that.  I can do that.  I CAN DO THAT.  Right?

Ahhh.  To just be well and not have to bother with this stuff.  Why didn't Santa leave a big box of THAT under my tree?

Woe is me

Today is one of those days.  This weekend is the American Headache Society's Headache Symposium in Scottsdale, Arizona and I am supposed to be there.  I had planned to be there, bought a plane ticket and registered for the conference, and then decided I was too sick to travel by myself and didn't need to try to go.  But my friends are there, my migraine friends, and they are tweeting about it and learning so much and I wish I had gone.  On top of that, my head hurts today.  So I just want to whine and feel sorry for myself because migraines kept me from doing something fun that I should have been able to do.  I promise not to feel sorry for myself for long, but just for now, it sucks.  A lot.  And I wanted to tell someone about it.

On another note, if you are on Twitter and want to follow the tweets from the Symposium, follow the hashtag  #AHS12AZ.

Thanks for indulging my little pity party.

Meditation: I am NOT my pain

My psychologist, Dr. D., has got me trying something new.  I'm meditating, using the techniques of Dr. Jon Kabat-Zinn that are found in his book "Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness."  In addition to the book, there are some Guided Mindfulness Meditation CDs you can buy that I would recommend if meditation is something that you would like to try.

Let me just say from the start that I am not finding this to be easy business.  One might think being still and focusing on breathing would be simple, but nope.  It's really not.  Especially not when I am in pain, and the whole reason I am doing this is to try to find new ways to deal with pain.  The meditation technique taught in the book is called Mindfulness Based Meditation which is taught in Dr. Kabat-Zinn's Mindfulness Based Stress Reduction Clinic at the University of Massachusetts Medical Center.  I thought meditation was about quieting the mind, but mindfulness is more about being aware and observing what the mind is doing and thinking and feeling in that moment, and then bringing it back to what you want it focus on.  It's a very active process because the mind constantly wanders.  It's a different approach than  I expected.  It's very focused on the present moment.

The first two weeks I tried to practice with the CDs, I found it nearly impossible to focus on anything except the pain in my head.  The first CD we are to do is called a Body Scan  Meditation.  It asks you to focus on different parts of the body, and then as you "breathe through them" you "let them go".  What I get out of this is that I am slowly seeing myself as a being and not a body as I let different parts of my body go.  I am literally letting my body, and any feeling or pain associated with it, go.  However, when I have a migraine, I can't focus on the parts of the body I am supposed to, I am only focusing on the pain in my head.  (The book doesn't address what to do about this until pages 294-296, which I find wholly unhelpful.  It should address this quicker, in my opinion.)  In discussing the book with my doctor, I told him I felt as if I was supposed to treat my pain like an elephant in the room, to be noticed and then dismissed as nothing dangerous or important.  However, a migraine isn't an elephant, it's a friggin' lion that is chasing me and going to devour me if I don't give it the proper attention.  For instance, when I have a migraine, I usually have to put pressure on my head and move some to find the right position to relieve the pain.  I can't lay perfectly still as you are asked to do on the meditation CD.  So I kept shutting the CD off in frustration halfway through in pain.

Finally, I decided to read ahead in the book and see if there were any tips for when you can't focus on anything but the pain.  Luckily, in Chapter 22, there were.  For instance, what usually happens is that while I am focusing on the pain being intolerable--I am actually tolerating the pain in the present moment.  What I am really doing is catastrophizing the pain and being concerned about the future moments--because I just KNOW it's going to keep hurting.  Instead of borrowing that pain from the future, I have to focus on staying in the present moment. It's easier said than done. Also, not catastrophizing the pain, recognizing that my thoughts about the pain--such as "This is killing me," "I can't keep doing this," "How much longer can this last," "Why does this keep happening to me?"--aren't the pain itself.  They are just my thoughts about the pain.  They aren't me, they aren't the pain, they are just thoughts that I can let go of.  I am not my thoughts, I am not my pain.  

See why it would have been helpful to know that at the beginning of the practice? 

There's other stuff about accepting the pain and going ahead and feeling the pain instead of fighting it, and observing it for what it is.  Not judging it or hating it or resenting it, just accepting it.  That seems more difficult to me.  I think I'll have better luck trying to control my thoughts about it and realizing I'm already tolerating the pain now, so chances are I'll tolerate it in the future too.

What I find happens when I try to do anything quiet right now, anything where I don't  have a distraction, is that the pain that is always there but that I can usually ignore creeps in.  So as soon as I lay still to meditate--boom.  There it is.  I have found that if I can focus on my breath, relax my forehead enough, and focus on saying "I am not my pain.  I am not my body.  I am not my pain."  I can reduce the feeling of pain somewhat.  Now, when I have done this in full blown migraine mode, I have still not been able to get much pain reduction if any at all.  One time I managed to relax my face some and that was kind of nice, because I find my whole face is really tense during a migraine, but that's been about it.  I am committed though, and I am going to figure this out.

I have not mastered any of this.  You'll notice when I write about migraines I identify them as MY migraines.  Who else's would they be?  Who else can identify how a migraine can feel to me?  I am going to work on identifying them as THE migraines, not mine.  I am not migraines, they don't have me, I am not my pain. 

Have you tried anything like meditation to control your pain or help cope with illness?  What have your experiences been?

My latest Depression drama.

So, I have been Depressed, capital D, for the past year.  I  haven't known whether to write about it or not because it's one of things that people don't really talk about, and if you can't talk about it, well, it seems you shouldn't write about it either, right?  But now, I feel like I am kind of coming out of it a little, and I want to cleanse myself of the experience.

I have something called a Vagel Nerve Stimulator, VNS,  implanted in my chest that is supposed to help control Depression.  However, two things potentially messed that up in the past year.  1) The battery went dead. 2) The wire going from the generator to the Vagel Nerve in my neck broke. So, I wasn't getting much help from the VNS.  The VNS also probably helps my migraines--although other than my anecdotal experience there is no official evidence of VNS helping migraines.  So in the past year my migraines have been worse than usual too, which also increases my Depression.  This has been a perfect storm of physical and emotional torture for me for the past few months.

So, one might think, big deal.  Get the VNS fixed.  Oh, no, my friend.  My insurance company had another plan in mind.  See, somewhere between 2005, when I got it implanted for treatment resistant Depression and 2012, when  I needed the generator replaced, insurance companies decided that there wasn't enough evidence that VNS decreased Depression sufficiently so they stopped paying for them--even for people who already had them.  So, I was looking at having a dead device in my chest that I had proof--to me and my doctors--worked in my particular case, but I still couldn't get replaced.  Brilliant.  Anyway, luckily, very luckily, because my husband's company is a self-funded insurer and they were willing to overrule the insurance company and pay for the device, I was able to get it paid for.  However, it took an almost year long fight for this to  happen.  So, now I have a new VNS and I think I am starting to feel some effect from it.  My doctor has also tinkered with my anti-depressants for the past year and I think finally has them where they need to be.

My migraines still are a mess.  So it's quite impressive that I feel like I am coming out of the Depression already given that my head still hurts 85% of the time.  That's why I think that the VNS and anti-depressants must be working, because usually, with my head like this, I would be feeling pretty desperate emotionally.  Finally though, I am starting to feel a bit more like myself.

That's the problem though, I don't feel quite like myself completely yet.  I'm no longer an emotional basketcase--which is a HUGE plus.  But I went through this long period where I just couldn't make myself care about things that I have always cared about, and I am still there.  I guess I am just wondering when that's going to come back.  I know deep down I still care, I just can't manage to make myself act like I care.  Does that make any sense to anyone but me?  I guess I have been pretending to care, acting like a placeholder for my other self.  I know when my real self comes back I will want to be involved in the things  I was doing before, so I have to force myself to do them now, but damn, it's been hard.  And I only have the ability to pretend for a little while, then I am emotionally drained and can't do anymore.  But I keep trying.  This week has been a little easier.  I at least want to be around friends again this week.  It's been hard to be around anyone until just lately.

I know I am not the only one who feels this way, so I thought maybe writing about it would let others recognize themselves or at least make me feel a little better.  And it has.  It's hard to keep things in forever.

I hope this finds you well.  Very, very well.