Welcome to the World of Dr. House
It’s been awhile since I’ve had the strength to write here. While I’m striving to stay away from self-pity, I can’t shake my profound feelings of grief and frustration.
Since my last post, I have seen an ENT (as the migraine specialist recommended) to arrange an ENG and hearing screening to rule out possible causes, other than migraine, for my dizziness, near-syncope, vertigo, and tinnitus. Everything came back normal, however, the ENT now has me on a mix of drugs to rule out Meniere’s disease: apparently the only way to diagnose is to treat and see if it works. Welcome to the world of Dr. House.
I really can’t tell if the medicine is working or not. I’m still dizzy, still feel like passing out, and my ears still ring – though perhaps less than before. The most common side effect it seems, other than more weight loss from losing water, is that my ear now hurts.
The most painful thing for me to accept though, is that the hospital visit I’ve been debating upon since the migraine specialist recommended it is now no longer an option. I called him yesterday to ask some questions regarding the length of the stay and his expectations on the probability of the procedure breaking my cycle. However, once I told him the severe reactions I had to the DHE in the Migranal he gave me, he said he could no longer recommend the stay as the IV would likely produce the same (if not worse) results.
I hung up the phone feeling there must be some other type of IV that could work. The ones I’ve tried haven’t and, this other, well, I’m not allowed to try. Am I destined to an ever-changing but continually ineffective regimen of prescription preventatives and abortives?
Expectations Too High?
Last Friday, I finally saw a headache specialist. Instead of the results, optimism, and high spirits I expected to carry out hand-in-hand with new advice, I left the office disappointed and discouraged.
After driving three hours across Texas to meet with a $300/hr specialist, I had anticipated some treatment, some new information, something. Perhaps my expectations were too high.
Acting upon the advice of my specialist, I am now off Topamax and onto Bystolic: a blood pressure medication also used as a preventative. While I feel better mentally (no more Topamax personality takeovers,) my migraines have not changed in spite of the new preventative or the 6 bottles of Migranal I was told to use every 8 hours for 3 days in hopes of breaking the increasingly persistent Migraine cycle. In fact, the Migranal seemed to make things worse. After every administration, intense nausea set in and I almost blacked out – weaving to and fro, grasping desperately for something to cling to as my vision disappeared into black spots.
Other than new medications, he did advise I see an Ear, Nose, and Throat doctor in order to have an inner-ear balance test as I have such extreme vertigo and lightheadedness. His last word of advice? A hospital stay for intensive IV treatment lasting an undetermined amount of time. As I was given no guarantee it would work, slim chances that even if it did work the relief would be temporary, and my insurance deductible of $5K is no where close to being met – I’m having to ponder this a bit.
Insurance Debacles
When you’re the sick, the last thing you want to do is fight with your insurance company. You’re tired, fatigued. You don’t have the energy to spend thirty minutes to an hour on the phone haggling with someone who doesn’t have the authority to do anything for you anyway. The truly disgusting part is – they count on that.
While at work on Thursday, a notice popped up in my email: You have a timely message waiting for you from Humana.
I assumed it was another routine “we’ve processed a claim for you” email but decided to check it out anyway. The last two weeks had been exceptionally difficult ones for me and I’d seen my neurologist several times before she referred me to both a pain management clinic here in town and a headache specialist in Houston. (My parting impression: she’s run out of ideas and apparently I’m someone else’s problem now.)
Turns out, the message from my dear insurance company was informing me that my last visit to my doctor wasn’t fully covered by my $50 specialist co-pay. While at the office, for lack of anything else to try, she suggested an injection in the back of my head. I agreed since we had already attempted multiple IVs, IM-shots, investigatory blood work and even a cervical X-ray of my neck to no avail. The shot (an occipital nerve block) worked for my newest pain, which had begun at the back of my head in the last month or so, for about 24 hours but did little to touch my original migraine. And now, my insurance company was informing me that the 5 second injection – that one little shot – was a surgical procedure and therefore my $5K deductible applied on top of the $50 office visit co-pay.
Now, I work in health care. I understand the puny reimbursement rates doctors receive from insurance companies if they bill with an injection + drugs type of billing code. But, I never dreamed this type of injection could possibly be considered a surgical procedure.
The bottom line? I’ve spent over $2K on co-pays, Rxs, and an MRI in four months attempting to “break” this migraine cycle. None of this applies to my deductible or my max out of pocket. And, after thirty minutes on the phone, I just didn’t have the strength to argue any more. Makes me wonder though – what’s the point of having insurance?
Grief and the Search for Whatever Lies Beyond
Through three and a half months of the migraine that just will not go away the hardest thing for me to face is that I’m depressed.
Hard to believe that that’s what I have the hardest time handling in the face of ten different medications, numerous side effects, IVs, injections, blood tests, an MRI, specialists, and of course – the chronic (now – official) intractable pain.
It’s not so strange though: in the depths of migraine madness I can no longer seem to reconcile the image of who I am with the person I’ve lately become. The person I remember is chipper. Outgoing. Optimistic. She laughs. The person staring back at me, tries.
It’s hard to do or be any of those things when every morning is accompanied by a relentless, pulsating nightmare of confusion, nausea, and pain.
I’m exhausted. And angry. Frustrated about the many – simple – things I’ve had to give up to the monster in my head for the sake of a peace I still haven’t found. Music. Lights. Singing. Yoga. Red wine. Beer. More than one margarita at a time. Running on Saturday mornings around the Lake with my SO. Chocolate. These are things I loved.
But most of all, I feel guilty.
Guilty because my disease could be so much worse than it is, and I should feel grateful that I’m not faced with one of hundreds of ailments that people all around the world struggle honorably with daily.
Guilty because I can’t pull myself up and shake myself off and be the chipper, bubbly personality every day that I (and those who love me) know, love, and depend on.
For those who know, however, It’s difficult to function in the usual manner in a state of constant, severe pain. It’s not so easy to “manage” when all energies feel drained by mid-day.
What do you do when you can’t get out of your head because your head won’t stop screaming?
An Acid Trip without the LSD
At 6:15 p.m. this evening I had my first classic aura “experience.”
No real warning, unless you count the relentless ringing in my right ear or the disconcerting feeling of driving through an ever-narrowing tunnel on my way home.
Shortly after arriving home I situated myself on the bed, hoping a little rest would ease my pain and allow the rest of the evening to flow smoothly. It is, after all, Friday night, and I owe it to my S.O. to be full of cheer – to be “on,” as they say – to show him a little fun.
Within just a few moments, I noticed two slightly off center, not quite circular pink dots following my trail of vision. The ringing in my ears grew louder as the dots grew larger, then smaller – brighter, and then less intense in color. Then, in one shot they scattered across the ceiling in a burst of tiny, little dots and disappeared from view.
Immediately following the pink dots was a phenomenon I’ve only seen in Disney movies. My eyes started pulsating in time with my headache and the ceiling and walls (along with the pictures, fan, and everything else in sight) began to move along with the beat. Bump . . . BUmp . . . .BUMp . . . .BUMP. . . . Not content to move strictly up and down – the ceiling began spinning, slowly, in time with the beating.
Just as quickly as it began – it stopped. Only to be replaced with a spiraling black and white snake in the corner of my right eye. Just as it reached the center of my field of vision – it vanished.
All of this took no more than five to ten minutes at most. Another ten minutes and the pain became more severe.
Ah, it’s a good thing I read! This time, I really would have thought I’d lost my mind.
The Cheshire Cat
Living with a persistent throb becomes easier with time. It hurts more some days – less others – but it becomes easier to ignore as the days go by. The persistent, yet rather dull (2.5 on a good day, 3.5 on a not-so-good) throb is easy. The sound of pulsating blood even begins to feel a little comforting after a while. Though annoying, the persistency I can handle - it’s the spikes that get me.
When they’re short, steady, or slow; I can manage. Armed with my mixture of peppermint and lavender oil and some deep, yoga inhale/exhale style breathing, the peak of migraine fury will only throw me off a few mere moments.
But, when they show up like a cheshire cat carrying a bag of tricks containing dizzy spells, sliding ceilings, hot flashes, ice pick stabs of severe pain, odd smells, baskets that grow disproportional sides, and strange sensations of being larger than the houses one is driving past - I must admit my small arsenal is no match.
Luckily, this not only severe but also makes-you-wonder-if-you’re-nuts type of pain has lessened due to my medication. Rather than three or four times a day, I only see the Cheshire Cat about 5 or 6 times a week. That’s progress.
I did, however, find myself standing over the bathroom sink this morning asking myself if I had already brushed my teeth. Now, that, my friends, is Topamax. 
Low Blood Pressure a Culprit?
A new study released yesterday in an issue of Neurology states that people with higher blood pressure may be up to 40% less likely to suffer from both migraines and headaches. Apparently the “stiff arteries associated with high blood pressure” may decrease the risk of head pain. http://www.sciencedaily.com/releases/2008/04/080414161552.htm
As a person with (typically) below average blood pressure, I find this interesting.
Just yesterday, I was voicing my concern to my S.O. about my ever-increasing blood pressure. Since beginning my migraine drug cocktail three weeks ago, my blood pressure has steadily risen from 102 over 60 to 120 over 70 to 125 over 82.
Perhaps this means my body is trying to make this medication work for it. Perhaps it means something serious. After all – one risk factor for stroke shouldn’t be traded for another.
Of course, there is evidence that any kind of pain – and particularly one as excruciating as migraine pain – can spike a blood pressure reading.
http://www.healthcentral.com/high-blood-pressure/question-answer-27970-63.html
While my daily, unrelenting head pain seems to have let up from a constant 4 to more of a steady 2.5 – 3.5, the spikes of pulsating, drilling agony seem to have increased in intensity from a 5 to anywhere between a 6 and 7.5. Perhaps this, too, and not just the medications, may have some part to play in the increased blood pressure.
A Little Hope
After a day full of drugs: a (second) 500mg I.V. of Depacon coupled with a 60mg I.M. shot of Toradol and a 12.5mg dose of Phenergan to top it off; I begin to feel a little better.
This morning was the morning to increase my Topamax to 50mg per day. And, though I awoke with an instant pain of around a five on a ten-point scale, it is now 3 hours later and the pain has tapered down to a persistant and throbbing – but dull – 2.5.
While this could very well be the result of my morning cup of tea – caffeine has some instant (though fleeting) pain relieving effects – I’m hopeful.
Pills, IVs, but No Relief
At 3 p.m. yesterday, my neurologist’s office called. “Are you close enough to make it in by 3:45?” I hung up, shut down my computer, and left work.
The Frova hadn’t worked. 10 pills down and no relief. Not even a little, not slightly, none – at all. As I had now had this particular migraine for at least five days straight (don’t ask when it began – for some reason, pain is often difficult to pinpoint its beginnings,) it was decided I needed an IV to abort it quickly.
After being pumped full of enough liquid to bathe a baby in, I was told to lie still for five minutes. “It should kick in within thirty minutes to an hour,” said the P.A. “Go home, take 25mg of Phenergan, and get some rest.”
“Should I take my next scheduled dose of Frova?” I asked.
“Yes. Go ahead and take three Advil with it, too.”
Just as she closed the door, she stopped. “Oh, one last thing. Make an appointment for another injection tomorrow. This doesn’t have a very long half-life and you’re probably going to need at least one more.”
Five minutes passed. I made an appointment for two days later for a second injection (I do have to work - I can’t spend all my time in doctors’s offices) and went home with high hopes that maybe the pain would finally stop – even, if only for a little while.
Ah, optimism. So useful in keeping us going and yet so often disappointing. Granted, I didn’t take the Advil – I figured one more medication couldn’t possibly be all that helpful at anything other than giving me an ulcer – but I did take the Phenergan and the Frova.
The pain didn’t stop. It didn’t even loosen its grasp.
Morning Run
Though my wish was not granted, the weekend went well. For the first time in four weeks, I found enough energy to get up and run Saturday morning. Three miles – felt like the hardest thing I’ve ever done. Stomach churning, head pounding . . . but I did it.
Afterward, the pain came in rushing waves – breaking, one on top of the other, until finally it dulled to a persistant knocking.
