Thursday, February 16, 2012

My Own Private War interaction with my neuro this morning made me feel so powerless and alone that the rage is simmering like rice cooking at a bit too high of a temp with spits and sputters of steam escaping under the lid. Since the "big exacerbation of '11" I've had these horrendous headaches. Way worse than any before. Focused on the right side of my head. Simply the worst. Then, last week, over Thursday, Friday, and Saturday, the head pain kicked into a whole new stratosphere. It was as if some living breathing entity had taken up residency behind my eye. Deep lancing stabbing pain. Pain so intense that my belly would roil and I would vomit. 
One aspect of my symptoms could be described as light and sound sensitivity. It sounds oh so very Victorian ladyesque. One just needs to lay a cool cloth over ones face, stretch out on the divan, and the vapors will pass. Instead it is more like the slightest noises, keyboard taps, chewing, dog nails on plywood, fans whirring translate through my scrambled egg brain into a cacophony of white noise that slowly builds until I can't hear, can't reason, can't think. At the same time the light left on in the hall or the glow around the blinds chips away at the walls I construct to keep out the pain marauders. Maybe that is the best way to explain. Think of the second Tolkien book and the battle at Helm's Deep.  Sounds are orcs, and lights are cave trolls, and pain is one of the bigger creatures, and they are all working together to inexorably destroy me.
So, carrying this Tolkien metaphor probably a little too far, I went to my doctor for reinforcements. It is important to note that I rarely ask my docs for help in any kind of 'help me, I am drowning,' kind of way. Rather I tend to do the every so often check up, tweak the meds, get me outta here type of visits. Today, I had even researched a type of headache called Cluster Headaches that are seen in MS and have many symptoms in common with what I am fighting with. I had a few papers with highlights and treatment options. I was actually, and stupidly, somewhat hopeful about seeing him.
The neuro couldn't have been less helpful. He didn't want to look at the articles I had. Summarily dismissed cluster headaches. He didn't want to problem solve what to do the next time I have a severe episode. Several times he muttered that I was already, "taking too many meds." Yet, couldn't seem to identify any that he didn't think I should take, should substitute for another, or any options to help me through this tough time. He started dictating before I had asked all of my questions. Finally, I flat out said, "Dr. What should I do the next time this happens?" He paused. Silence. Then said, "well see me in a month."
So, that is that. What is the point of going to the doctor? I have a progressive incurable neurological illness. My neuro has made it clear that he can't help me. So it is up to me and the dear crazy people who are taking this ride with me to fight the MonSter.


Jill said...

Bummer, all that research you did. Is there anything in the things I printed that you can try on your own, or is it all Dr/prescription stuff?
Love you, Jill

Sherri said...

i get those cluster headaches too... the last time it happened, i had headaches every day for 5 months... 5 freakin months!

the only thing that did any good was a combination: 3 aspirin, 2 dayquil capsules, and tiger balm rubbed into my neck at the base of my skull and a strip rubbed across my forehead....

i actually got enough relief to function....

i'm so sorry you are having these horrid headaches....

Nedarb said...

Yeah, perhaps you could see your GP about it? Hang in there, hope you're enjoying the pics.

Muffie said...

No, no, no -- totally unacceptable. You need to stand up to him, and really give him a piece of your mind! Don't wait for a month -- call him next week, insist on speaking to him personally, write down what you want to say, be firm, don't allow interruptions, and tell him off! You're paying him for a service the same as you pay for any other service.
Sorry for the rant, but I can't stand these doctors who think they're God!

Have Myelin? said...

well that was a waste of time.

i used to have raging migraines and if you have them all the time or "are on too many meds" (it's true...they do make it worse) here is what my neuro did.

i went oral steroids for a few days for to stop my migraine - i currently take topamax. i never take vicodin, hydrocodeine, etc. as they "trigger" migraines. i always ask the dr when i get a new script if it "triggers" migraines. you'd be surprise how many do.

and if your neuro is like that, can you find another one?