It's a gigantic spoiler. probably around a couple of pages. So yeah, if you don't want to read, dont' read.
But then the big one struck in March.
On about March 10, I started having a migraine along the lines that I had never had one before. My current doctor uses a scale of 1-5. But the priors used a scale of 1-10 and it fluctuated between a 8 and a 9. Most of my usuals used to be between 2-4 and these I've managed easily by just gritting my teeth and maybe popping an excedrin or an advil every once a blue moon.
I went to my migraine specialist and he took an MRi & MRA with & w/o contrast and found nothing. My regular doctor before this gave me a steroid shot that brought the pain down for a few hours to a reasonable level and gave me a steroid dose pack of...toradol (don't expect me to name off all the medications I've taken in the last 6 months as I've taken over 30 different medications and I doubt I remember all of them) It didn't work. My migraine specialist, a neurologist, kept telling me there was nothing wrong with me, and he sent me over to a pain management specialist, who told instantly that I had Status Migrainous.
Let me take a small detour now on what Status Migrainous as:
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Migraine has now been shown to be a genetic neurological disease characterized by flare-ups often called "Migraine attacks." A headache can be one symptom of a Migraine attack, but it's just that -- one of the possible symptoms. Some Migraineurs (people with Migraine disease) have Migraine attacks without having a headache.
When a Migrainuer does experience the headache phase of a Migraine attack, it generally lasts from 4 to 72 hours (untreated or unsuccessfully treated). The International Headache Society's International Classification of Headache Disorders, 2nd Edition, defines status Migrainous as:
Description: A debilitating Migraine attack lasting for more than 72 hours.
Diagnostic Criteria:
A. Typical of previous attacks except for duration.
B. Headache has both of the following features:
1. unremitting for more than 72 hours
2. severe intensity
C. Not attributed to another disorder
A general rule of thumb recommended by many Migraine specialists is:
If moderate to severe Migraine pain lasts more than 72 hours, with less than a solid four-hour pain-free period, while awake, it should be considered an emergency requiring an office call or a trip to the emergency room.
Why is it important that status Migrainous be treated?
The pain of a Migraine is from dilated blood vessels in the brain and the inflammation of tissue and nerves around those blood vessels. Extended dilation of the blood vessels puts us at increased risk of stroke. Thus, it's important to stop a Migraine attack, as opposed to simply masking the pain with pain medications, as soon as possible.
SO my instructions from my pain management doctor was clear. I had Status Migrainous and the way to clear that was with two methods. One, botox. He would inject it into my skull and it would keep it clear for a couple of months but this was expensive and not covered by insurance. The other that was covered by insurance would be a live - cranial nerve blockade + chemical injection into my spinal cord (something similar to a epidural) during a live x-ray. BUt he said that he needs a secondary reference. I need to go back to my primary doctor. My migraine specialist. He needs to confirm this as Status Migrainous.
Well, you see where this leads. Do you? Well, no? I'll tell you. My doctor told me that it was not Status Migrainous. Two and half weeks into it, and still no relief.
Oh, about three days into my migraine, I get a letter at home from the company I work at, an NPO, saying that because of bad profits this year, we are cutting off such and such benefits including the one that doesn't send me to pound-me-in-the-ass-prison. No, I kid. That would have been preferable. They actually provide health care there. They cut off my short term disability. See, there's the hitch.
I couldn't go for SSRI or any other federal programs because my doctors were saying this was an unqualified migraine attack. ~_~. It was aggravating.
My migraine specialist, aside from being every saintly thing that i have set him out to be, also had his office about 65 miles away. So it was a pain to drive there and back every single time.
So we decided to try a very popular neurologist who lived about 20 miles away from us who seemed to come highly recommended. We pleaded and pleaded with my primary doctor to make the calls necessary to get me a quick appointment. She did what she could but she got me in with one of the secondary doctors working in his office but not the famous one. Oh, well. It doesn't matter, I suppose.
I got in, and as soon as I told the doctor about my condition and about the probability of Status Migrainous, she said it couldn't be it because the migraine specialist who had an office called the headache institute of Texas was saying it wasn't so.
She tried me on this medicine and that medicine.
Around the same time, I started having what I thought of as seizures. Let me backtrack again.
As a child, I had these fainting spells that were diagnosed as seizures. They had the requisite seizure activity in the brain, and the diagnosis was passed. This was when I was about 9 and something similar happened again at 16 (this time they weren't able to map the seizure activity but the same diagnosis was placed.)
At the ripe old age of 23, now, this started happening again, but with much greater severity. Before, I would slowly flop to the ground. Now, I just lost consciousness and I would fall and hit things, people, objects, walls, whatever, without regard. This was if I was standing, sitting, laying down. I just passed out. The neurologist started treating me for this as well. She tried seizure medication as well migraine medication and I was on an ever-changing dosage of medication. All-the-while the migraine is at a level 8 or 9. I couldn't read a book, I started having night mares and thus couldn't sleep. Falling heavily into walls, doors, and at times into glass objects, damaged me pretty heavily. My back and neck were/are in bad condition.
At one point, I fainted with a glass in my hand and I fell on a glass shard. It had just punctured my cheek to the extend that it had it a blood vein. I didn't notice the pain for some odd reason. A few hours later, my wife came into the house and shrieked as she saw me sitting there staring at the wall with a bloody clotted cheek. It wasn't a bad puncture, it was just a small hole but big enough to make an effect on someone who saw it.
I couldn't even hold my daughter. My wife found an internship for the summer, so we had to send my daughter to daycare because I couldn't watch her anymore because I had fallen on her multiple times now. In fact, this is at a latter point in her life (in the last couple months now) that she asks me questions such as "why I hurt her?"
So we have, march, april, and then may. Mid-may, my doctor kinda looks at me and goes, okay, get this, you have a serious condition, it is life threatening. It's called Status Migrainous. My wife wasn't there at this point. But I restrained myself. I have always told myself that I am never the litigious type, that litigation never solves anything, but I was an inch away from considering hitting her with a suit. I didn't, of course. I learned later that litigation caps for medical lawsuits in texas are capped at $250k and after doctor consults, lawyer payouts, loss of income and everything else, you barely eke out a good 20-25$k.
So I was put in the hospital and she strung me with an I.V. drip of D.H.E. 45 for 3 days straight. And that finally broke the migraine. It did it. It was gone. I still had migraines after that and the level of the migraine was no longer restrained to 3-4 but to 6 and 7s and 8s at times. But that monster Status Migrainous was gone. Hossanah.
My seizures weren't though. She referred me to an epileptologist. The rigmarole started again.
More medications, more testing, more this, more that. I found out I was allergic to Depakote in the middle of all this.
I was having about 7-8 attacks a day at a time.
We tried to find out if it was cardiological in any sense and that was found out to be nugatory.
Maybe there was some muscular problems - nope.
Skeletal problems -- nope
SInusidal problems -- nope
I ran a stress test -- do you realize how aggravating running a stress test is when passing out is? -- nothing was found wrong -- well aside from my general level of slouching, and non-exercising and such.
In the end of June, he couldn't find out the reason so he admitted me to the hospital for a week of video eeg in the epileptic monitoring unit at a premier hospital another 60 miles away from home. Why things every be close to home?
I was taken off all my meds and hooked up to measure my brain waves and put in the ritual religious medical gown and would have someone watching me every second of the day. I also saw some awesome movies and fainted and fainted in the week and a half.
But my brainwaves didn't blip in the wrong wave a bit. What the fvck?
Now isn't that odd?
But, my doctor comes in all happy-like. He says, I've got it. You've got psychogenic non-epileptic seizures (PNES). Basically, they are stress related. So, I took the MMPI (Minnesota mental personality inventory) and I was told to go see a psychiatrist and never ever see my epileptologist. Which apparently is not what a PNES patient is supposed to do. He is supposed to see both a psychiatrist and a neurologist. So there was another doctor that I wanted to kick in the shins.
So from june to august, I went and say a psychiatrist who kept changing my medications over and over again giving me lexapro and then adding remeron and then taking off remeron, and then adding effexor and then adding clonazepam.
At the start of August, I decide to go back to work. Oh, until this time, I've been paying $600 a month for my work's insurance because I work an hourly job.
My migraines have started up again recently. Of course it doesn't help that one of the triggers is that any sort of slight jolt to the head gets them going. So I sit here with a migraine that's been going on for the last 7 days with most migraine medications that don't work for me. Right now I've just popped in a Maxalt MLT and a Chloroplorozine tab into my mouth at the same time and I'm hoping the pain goes down.