Friday, January 18, 2013

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....

Sunday, January 6, 2013

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!

Tuesday, January 1, 2013

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?