Curious George Goes to the Hospital

Ok, so I didn’t have a puzzle piece in my tummy, but I had a puzzle going on in my head.  So, after over a month of experimenting with NSAIDS and triptans the inevitable came–a week in the hospital.  It was one of those difficult decisions that I knew I needed to make.  There was no way around it.  I think that is why I didn’t have the usual anxiety that precedes a trip to the hospital.

During hospitalizations past I have been a bundle of anxiety.  It was the last thing that I wanted to do.  I would beg the doctors to try something else, anything, just don’t send me to the hospital.  I would be afraid.  The sounds, the nurses, the medications, the loneliness.  The loneliness is the hardest.  My husband, and in the past my family, were only able to visit a couple hours a day.  I was alone the rest of the day.  Alone with my thoughts and my fears.  What if this doesn’t work?  What if my headache comes back when I get home?  It’s a lot to worry about when you’re supposed to be relaxing and healing.

But this time seemed different.  With our lack of health insurance I knew that my doctor’s hand’s were tied as far as outpatient treatment was concerned.  I had been preparing myself for several weeks for the hospitalization.  I was relaxed about going in.  I was relieved about going in.  After nearly two months of intractable migraine I was ready for relief.  I made the call and said I was ready.  And I went in the same day.

I’m not saying that those same things that made me anxious weren’t still there.  I’m not saying that I didn’t cry once or twice when it was time for my husband to leave for night, or I didn’t lay alone listening to my IV pump wondering if this treatment would be successful, but this time I was I didn’t let it get to me.  Instead of getting anxious about those things, I stayed positive.  Instead of counting the treatments and mentally ticking them off like some prisoner, I did my best to redirect my thoughts. And his time felt much better this time than I ever have before.

Unfortunately the treatment was not a complete success.  I did go home with a headache, though not a migraine.  The hospital doctor explained it to me in two ways.  One–there would be some carry over from the medication they had given me in the hospital so I could expect a little more improvement in the next day or two.  Two–I was still suffering from rebound headache due to all the pain relievers I’d been taking over the past two months (I’m saving rebounds for another discussion).  I must say that my headache has greatly improved since I’ve been home.  No, I’ve not had a headache-free day, but who of us has.  But I’ve been able to live.  And I think that is the least that any headache sufferer can ask for.

Migraine Takes a Vacation

Memo

To: Body

From: Migraine

Subject: Vacation Time

 

The holiday season is upon us once again, and this year I have decided to take a vacation.  This year has been particularly rough, with the late nights and early mornings on top of my regular days.  I’m sure that you appreciate the hard work and overtime that I have put in to make sure that you receive truly quality migraines.  So, I’m packing my bags and heading out.  I’ll be back after New Years.  I will be unable to be reached while on vacation.

 

Here’s to hoping that your migraines take a vacation too!

-Jen

The Price of Relief

I sit here at my computer doing my Ray Charles impression (if you consider wearing my sunglasses inside and tickling a plastic computer keyboard an impression) in my 18th day of something we can all appreciate—status migrainous.  Yes, that lovely condition of full-blown, skull-crushing, debilitating pain that just won’t go away.  In the past the solutions to the this problem were simple, even if they weren’t pleasant.  These days, however, it’s a whole new game (something like Scrabble or Monopoly since I was never good at ball games) and it ain’t cheap.

To begin with, this time around there is a new doctor in the mix.  His speciality is headaches, so he is more familiar with what off-label medications will work on headaches.  He likes to mix cocktails of medications and use those to treat stubborn headaches, be them migraine or not.  Sometimes the ingredients in the cocktails are so rarely used the pharmacy has to special order them.  Sometimes the ingredients are so new they cost hundreds of dollars for seven days worth of medication.  Which brings us to our other problem.  In this game we’re playing lets say I got the “Go Directly to Jail, Do Not Pass Go” card.  I don’t have insurance.  Some of you may recall that our COBRA ran out some months ago.  We’ve managed to find prescription discount plans for my preventative meds like Topomax, but there are certain things that are not covered.  And exotic drug cocktails are one of them.  After receiving the message from the doctor’s office that they had called a medicine taper for me to take for my migraine we headed to the pharmacy, only to come home empty handed.  The medications cost more than $300.  With our budget there was no way that we could pay that.  I was fortunate enough that my doctor was willing to tweak his cocktail—three times before he could find a combination that didn’t include a medication that was either discontinued or would leave us starving for the week.  I wasn’t fortunate enough for this final cocktail to do the job.

So I sit in front of the computer doing my Ray Charles impression, waiting for my husband to get back home from the pharmacy (we’re trying a muscle relaxer this time).  I ask myself what is the price of relief?  Is it the $300 for the drug cocktails?  Or is it the stress and pain that I am going through as I wait for us to find just the right, affordable cocktail?

Poke, Pressure, Repeat–23 Times

I’d first like to share my personal milestone of going an entire year without being in the hospital.  This is the first time in five years and it feels quite good.  Of course I can’t eat the Halloween chocolate, but if it keeps me home…

So, for those of you who are wondering, I’m not talking about my love life.  I’m talk about what goes on at the doctor’s office–more specifically trigger point injections and nerve block injections.  For those of you with chronic tension headaches, Fibromyalgia, or other forms of chronic pain, you may already be familiar with trigger point injections.  Trigger points, in me are best described as knots–tight, ropy areas in my neck and shoulders that eventually get so tight that even my husband refuses to rub them–that wind themselves around nerves.  This can often cause pain to be sent to areas far away in the body from the original knot.  That is why they are call trigger points.  Not to make light, but this explains why a bad night’s sleep can leave me with a numb pinky the next morning.  The trigger for the pinky area is in the upper shoulders.  If my posture is bad the night before I may wake up with a numb hand.  For more on the trigger points just Google trigger point maps.  You’ll find about as many sites for those as for migraines, so I leave you to sort through.  I didn’t really find a great one that I can recommend.

Back to those pesky trigger points.  There are a number of treatments for them.  The first one they always list is relaxation.  Moving on.  There are some lovely alternative therapies like acupressure and acupuncture that I’ve been dying to try, but there’s that pesky little financial aspect.  I’ve done some physical therapy, which has had some success, especially in conjunction with the injections.  My doctor prefers, if I can tolerate it, to go the same day as the injections so the physical therapist can really work the solution into the muscles.  But I seem to have jumped a step ahead.

The injections.  To try to avoid confusion we’re going to call nerve blocks anything performed on the skull region and trigger points as anything below that, including neck.  Like any cook, baker, or brewer, every doctor has their own cocktail.  It is usually some form of corticosteroids.  I’ve had three doctors for these injections and they’ve each done it a different way.  Each doctor will tend to give some kind of short acting steroid like a lidocaine so you don’t feel the pain of a milligram of fluid being injected into places it doesn’t belong.  Beyond that it is bartender’s choice.  My neurologist doesn’t use steroids for fear of long term tissue damage, but will do the injections more often.  My current headache specialist uses a mid-life steroid, that will eventually last longer and longer (the first treatment lasted 6 weeks, the next 12).  The first headache specialist used two steroids–the first only lasted about 2 weeks, the second 3-5 months but it took about 2 weeks to take effect.  He also only treated my neck as part of his nerve block treatment.  In general I must say I have had success with these injections, though I’ve had the best success when I’ve been able to combine them with physical therapy.  That whole relaxing thing might not be so bad either…

Now the nerve blocks.  I first heard of these when I was sent to Dr. Bryan Cooper in Greenville, NC.  Dr. Cooper has done extensive research on headaches and migraines which has led to a great understanding on how the occipital nerves at the base of your skull are directly linked to the pain causing nerves in the temples.  Block the paths of the nerves and you block the path of the pain.  And, yes, it is as simple as that.  Now, part of it depends on the type of headache you have.  It doesn’t work in 100% of all cases, and sadly, lately, it has not had the usual affect on me, but when it does work it feels like a miracle.  You just have to remember that they will wear off, and that can be crushing the first time it happens after being migraine free for three months.  The injections themselves are not bad, if you don’t mind injections or if you can find your happy place.  If you have problems with injections, practice finding your happy place before you go.  You will receive approximately 8 injections in your head–2 in each occipital nerve and 2 in each sub-occipital nerve.  The first on either side are the worst of course because there is no lidocaine.  The rest will be better because your head will get increasingly number as you go.  Just keep telling yourself this is worth is.

There is a there type of injections that I am aware of, but have not experienced–Botox.  If anyone has experience with these I would love to know how those go.

I wish everyone a safe, Happy Halloween!  Happy poking

-Jen

Calling in Sick…Again

I started a new job the week before last, after almost a year and a half of not working.  It has been an exhausting task, and certainly not one free of migraines.  But so far I’ve been able to manage the two without a complete collapse.

If you count the job I started last October and had to quit after a week because of another ‘status migrainous’, I’ve lost three jobs to migraines.  No, I’ve never been fired from a job because of them, but I have been dropped of the payroll, been suspended pending a doctor’s note stating I won’t have any more migraines, and just forgotten about altogether by the manager who does the scheduling.  Needless to say, I was a bit nervous about getting back out in the working world this go round.

Whether you have a regular 9-5, work part time, or stay at home, migraines are going to affect your work in some way.  In the past I have had great difficulty managing the two.  So what is different for me this time?  I can be perfectly honest and say that this time I have to make it work.  Previously I had my husband’s income to fall back on when my migraines interfered with work.  But this time is different.  My husband is unemployed–laid off almost 20 months ago.  I am now the only one in the household bringing in a regular paycheck, and that only increases the stress.

For the most part I’ve been able to make my headaches tolerable with my magnesium regimen.  I nearly panicked one day when I realized I’d forgotten to take it before I left the house and had no more in my purse.  But once I calmed down I was able to make it until lunch, when I was able to run to the GNC three stores down.  It still didn’t get rid of the headache, but it help me make it until it was time to go home.  Unfortunately I can’t close my office door, or hide out in a break room.  I can’t put on my sunglasses to block the light coming from the massive windows in my warehouse-style store.  And I certainly can’t ask my supervisor to go home a few hours early.

If nothing else this job is teaching me that I have a resolve that I never knew I had.  My breaking point is much higher than I thought was.  I still crash when I get home.  Some nights I barely make it to dinner before I fall asleep for the evening.  But the big difference this time is that I somehow manage to get up when the alarm goes off.  Although I’m barely functional, I’m at least functioning, barely.  I don’t know how long this will last, but I’m going to ride it out as long as I can.

A Moment of Weakness

I mentioned in an earlier blog that I had discovered that chocolate was one of my triggers.  Well, it had been a really rough week and somehow I convinced myself that I had to be wrong about chocolate.  It had been so good to me for so many years.  How could it suddenly have gone bad?  It couldn’t hurt to have my favorite chocolate ice cream.  And besides, I’d earned it.  So, I ate it.  And no sooner than I had gotten up to put the bowl in the dishwasher was I crying in pain.

So this begs the question, how do I replace my last remaining comfort food?  I gave up Cheerwine (for those of you outside of a two-state radius of North Carolina it only the best cherry flavored soda ever) when I gave up caffeine.  I did discover Fanta, but it’s not quite the same.  Chocolate was all I had left.  And since there are no recovery clinics for chocoholics, I’m stuck figuring this one out on my own.

This is where you come in.  I know all of us have had to find replacements for foods that ended up being triggers.  One reader replaced his beloved peanut butter with almond butter when he discovered the peanuts were triggering migraines.  So I’m curious.  What foods have you had to give up?  Have you found a replacement or were you able to stop cold turkey?  Do any of you have experience with giving up chocolate?  How did you do it?  I hope that we can start a forum to share ways we all have discovered and overcome our food triggers.

Write on!

0-10 in 8 ounces Flat

Okay, so it was more like 3-7 (you know, those obnoxious 0-10 scales your doctor is constantly asking you about), but you get the idea.  I’m talking about food triggers.  I can’t necessarily say that we all have them, but certainly a majority of us have at least one food or ingredient that makes our headaches worse.  I’ve been doing some learning about mine.

If any of you were to ever know me, or even have a long conversation with me, you’d find out quite quickly that I am a literalist.  I have the disadvantage of tending to take everything at its literal truth.  Case in point: my new headache doctor tells me I must cut out all caffeine, from that day forevermore.  Well, I think to myself, chocolate has caffeine so that must mean I have to cut out chocolate as well.  So, for almost a month I’m nearly headache free (which for me means I was around a 2-3 on the lovely scale–which I personally object to for its subjectivity–at a constant, with a few forays into the 4-5 range).  After about six weeks my nerve block injections start wearing off, so we make an appointment to go back to see the doctor.  I had a decent headache the night before the appointment, so my husband convinces me to cheat a little.  I had spent the last month discovering how many things contain chocolate, and how few things made the craving subside.  So I have my Milky Way Midnight and am in heaven, for about five minutes.  And then there it was, that terrible pain we all know as migraine.  I assume it was the caffeine.  My doctor, however, didn’t.  He told me I could eat as much chocolate as I wanted, but maybe it was one of my triggers.  I listened to the first half of the sentence, and ignored the second.

Fast forward to two days ago.  After my second set of injections I hadn’t had nearly the success that I had had the first time.  In fact about three months ago I started another migraine cycle, with constant 5+ pain.  Two days ago I was actually feeling pretty good.  As I said about a 3-4.  I felt like I was finally breaking the cycle.  We made our voyage to Krispy Kreme (one side note I must make–it is a sad commentary on our economy when Krispy Kreme has started making smaller donuts).  Our usual plan of action is to get our two dozen plus four to eat at the restaurant.  So we’re eating our hot donuts, washing them down with a nice bottle of chocolate milk, when suddenly that familiar feeling returns.  My mind asks the question, “what the hell did I just do to make this happen?”  And I looked at the bottle of chocolate milk.  The couple of days prior I hadn’t consumed any chocolate.  There was no milk, so no Oreos, and we’d been out of chocolate covered donuts for a week.  Did I mention I’m a chocoholic? So, the chocolate milk is the only thing that it could be.  Maybe I should have been listening to the second half of that sentence all along.  Needless to say, my chocolate fast has been reinstated.

There are multiple ways to discover if you have food triggers.  The old standard is to stop everything for a month then slowly reenter things back into your diet.  It’s almost like going back to your toddler days when your parents would only introduce you to one food at a time to make sure you weren’t allergic.  There is an easier, or at the very least faster way to go about it these days.  There is a blood test that test not only actual food sensitivities, but also sensitivities to chemical food additives like Aspertame and MSG.  The only disadvantage is that speed costs money.  I’ve been dying to take the test ever since my doctor told me about it, but my insurance won’t cover the $350 it costs to take it.  Once you’ve received your results you can choose to work with a dietitian to develop a meal plan that works with your sensitivities.  I’ve spoken with her several times, and I look forward to working with her, not only to help my headaches, but also the other things that go on with my body that would be benefited by a decent diet.  And having a decent diet is something I’ve been wanting to do since my migraines went into overdrive five years ago (did I mention I procrastinate with my literalism).  If you want more information about the test and custom diet the website is http://www.leapdiet.com.

So, remember to think about what you’re eating, and have a Milky Way Midnight for me.

The difficulties of writing a migraine blog…

are that you collect a lot of research material while you’re waiting to see your neurologist.  As my migraines tend to be more ophthalmic in nature I haven’t really been able to read my research yet, but I hope good things will come of it.  I’m also keeping this entry short, since computer screens are one of my worst triggers (go figure).  But I hope to pass on a migraine relaxed week, and I’ll continue to bug you with random Tweets.  :-)

The Dreaded Migraine Onset-Part One

While this portion of onset discussion deals more with relief obtained through physical means, I feel I must mention that any medication suggestions were made by my doctors to me, and that I recommend discussing anything with your doctor or pharmacist before making any medicine changes.

Legalese aside, migraines do happen.  At some point they actually begin.  I’ve forgotten that point of late, but I am told they must start somewhere.  So, I thought I’d discuss some of the things that I do when a migraine starts.  I would love some input from readers as well, since I’m sure once I get rid of this one a migraine will start again at some point.

As I mentioned at the beginning I wanted to focus this blog post on the physical things we do.  Some seem obvious–go in a dark room and lay down.  Well, some of us don’t have that luxury.  I personally believe that the sun is a spotlight aimed directly at my apartment windows.  And, like a spotlight, it moves as I move through the apartment.  As such, I use a mask.  I bought it six years ago when I had a roommate who liked to stay up and watch TV until 2 or 3 in the morning.  It is one of the best $10 investments I’ve ever made.  You can buy them at Sharper Image or stores of the sort for gobs of money, but keep your eye out at Bath and Body or the Body Shop.  You’ll find one much cheaper there.  Heck, you may even find one at Walmart these days.  These masks will also come in handy if you’re at work.  Now, you may work in the kind of place where migraine behavior is frowned upon and you must keep on trucking no matter what (retail comes to mind, but I’m sure there are other places where naps are frowned upon).  Well, I say take your mask to the bathroom, make the occasional upset stomach sound when a coworker comes to check on you, and relax for a few minutes while your meds kick in (if you didn’t think I was unconventional before, I’m sure you do now).

So that’s the light.  For me the next most important thing is an ice pack.  Freeze that headache away.  And, if you have the proper ice pack, it can sometimes double as a light mask.  I was lucky enough to find an ice pack with a fabric cover with a piece of elastic to keep it on my head.  I will cry when the elastic breaks, then I will head to the fabric store so I can perform surgery.  I could not make it through a severe migraine without my ice pack.  For those of you who have never tried one, a word of caution.  It will hurt like the dickens when you first put it on.  Give it a few minutes.  Eventually everything will go numb and you’ll feel much better.  You may even be able to fall asleep.

Sound.  Now here’s a funny one.  Because of other things going on in my brain, I don’t like absolute silence.  But, I can’t stand sound when I have a migraine.  If I’m going to watch TV I turn the volume down to a point where I’d swear it was blaring for me, but my husband is pulling out the Miracle Ear.  When I lay down with a migraine I turn on a fan.  It gives me enough noise that the silence doesn’t bother me, but I don’t feel like my ear drums are going to burst.

So, curling up in the mostly quiet darkness with an ice pack is my way of trying to send the migraine away without meds.  Although I will be discussing them in a later post, I thought it important to talk about the non-medication alternatives since we don’t always have access to our meds–”No, I don’t need my purse, we’re only going to the store.”  And, too, even though we’ve taken them, it always helps to have additional ammo in the arsenal.

Again, please share some of your tactics.  It’s only through sharing that we learn new things, and that new thing may take a week-long migraine and make it a 3-day one.

Stress, It Causes Migraines

Did I mention stress causes migraines?  Even at this moment my adorable 14yo puppy dog laying on my lap trying to make me feel better is causing me stress, though I wouldn’t consider him the cause of my migraine.

The stress of my current migraine came two weeks ago.  I already had a migraine, but it was on it’s waning days.  And while I love my adoring public (at least I hope you’re adoring) I don’t particularly feel like sharing the exact details of the stress which caused the onset of this attack.  Only know that this is one of those times when you wake up in bed the next morning, think “WTF”, and then really freak out when you realize it wasn’t a dream after all.  Yes, it was that type of stress.

There are certain things that are recommended for stress-induced migraines.  Meditation is one.  While, with my million-mile-a-minute mind, true mediation has always been difficult for me, I found in this situation that simply being able to take the focus off  of my situation helped.  For me personally I find a little bit of pressure-point therapy just at the top of the bridge of my nose helps me focus outside of my current situation, reducing the stress that I am currently feeling, or at least the pain mildly so,.  If you are one the types of people who can go full Lotus and lose yourself, I congratulate you, and would love one day to join your ranks.  Until that day I’ll have to stick to my pressure points.

In appropriate situations music helps me with my stress.  As I’m sure all ‘migraineurs’ are aware, music is a double edge sword.  Music rids us of the awful noises going on around us, while creating awful noises all around us.  When in a hospital, for example, the sounds of doctor calls, and gay-ful visitors just outside your room give you the feeling of icepicks in your ears, while your favorite album on your iPod doesn’t do much better.  And if you’ve been in the hospital for more than a day or two, being closed off from the world with earplugs makes you damn-well paranoid about when the next prodding nurse is going to come in and ask where your pain is on a scale from 1-1.0000000001.  So when it comes to music I try a sliding scale of application.  I’ll start with a more white noise application–enough to relax me, but keep me aware of what’s going on around me.  If it eventually develops to a hospital stay, I will use the earplugs to sleep, since I figure that’s more important that staying up all night waiting for the next nurse or aid.  I find that they’re rather leave you alone during the night if possible anyway.

I realize these are only two possible things that can help with your stress.  For me, currently, the rX variety has left me at a loss of words, and the puppy couldn’t be more happy.  So, we shall take up on this topic again.  And, I encourage you all to share some of the things that work for you.  For a a highly stressed gal like me, I can always use some pointers!!!