Validation

It has been a symphony of droning lawn mowers on this holiday Sunday.  I try not to focus on my head.  For the first time in months I haven’t been logging migraines.  After six years of so doing, not recording migraines is freedom to me.  I have taken my power back.  How long I can rebel in my older age against the tools that neurologists use, I don’t know.  It seems all for naught, as migraine pain is pretty much disregarded.  If you don’t respond to any or all of the treatments, then you must be doing something wrong.  Endless months of an average of 20 days a month of mostly sixes on pain scales is seen by the doctors as “you seem to be doing okay”.  Well, no I’m not.  Having headaches nearly everyday is bad enough.  Worsening into even as low as a 3 on a migraine pain scale can be debilitating.

Truth is, migraines are incurable at this point in time.  There are things that can help the sufferer feel better, but doctors have cried foul in the last five years whenever I’ve ask for 20 – 30 pain pills a month.  “Causes rebounds” they say — or they invoke the latest phrase “medication overuse headaches”.  Then why do the migraines continue on in their near never ending stream if I don’t use pain pills?  What is wrong with this picture?

I believe I am done seeking help for migraines anymore.  What help?  Basically I interpret lack of pain relief as lack of humane care.  I could be in a zen spot all day looking at birds (per my last neurologist) and while that might make me feel better about my migraines, it doesn’t do anything to make the migraines feel better.

And now I feel like I have an ace up my sleeve.  Recently diagnosed with spinal stenosis, I was automatically given pain meds and more, no questions asked.  All this because an MRI validated the pain I was in.  There’s no such measure to show migraine pain unless you have something visible going on in the brain — tumor, traumatic brain injury or concussion to name a few. 

My back can hurt like holy hell, but the migraines can too.  So why is the back pain addressed with pain meds (surgery is going to be scheduled as soon as all the pre-authorizations come in) but migraines are not?  It isn’t fair.

However, just a few weeks before my back pain was officially diagnosed, I began using marijuana.  My regular doctor never prescribed anything for my back, not even after I asked for prescription ibuprofen or a stronger muscle relaxer since we were embarking on a 21 day road trip.  I didn’t dare ask for pain medication.  That seems to be a big no-no at this clinic. When I returned from the trip and called to say my back was worse, I was sent to physical therapy.  Three weeks in, with the back still locking up, pt only made a dent of a difference, so I scheduled another appointment with my pcp.  I was immediately referred for an MRI, but it would be another 10 days to get one scheduled.  Still no meds prescribed and was told to continue the pt.  So at this juncture I’d endured ten weeks of pinching pain affecting walking, bending, sitting, standing.  Ten weeks too many.

Instant validation from the MRI.  There’s  calcification and arthritis narrowing the spinal cord.  I’m not a doctor, but maybe the MRI should have been done when I came back from the trip?  Instead I was thrown in to physical therapy.  I went for four weeks and they still wanted me to come back for more.  It turns out no amount of pt would have unkinked the spinal cord.  I could have saved the $80 a week in co-pays for the pt till after surgery. 

But at least finally, an MRI showed that I had a reason to be in pain.  I was believed!  I’ve become so used to being in migraine pain with no validation, that I was afraid to stand up and say that the back pain really, really hurt.  I wondered if I had a low threshold for pain tolerance and began doubting myself when I wasn’t progessing through pt.  Now I know whole heartedly that I’m not an exagerrator.  I just wish there was some way to show that my migraines are real and that they hurt. 

I’m afraid I’m at another juncture of having to find another pcp.  My husband is very upset with the current one.  He has been witness to what I’m going through and he feels I’ve been failed.  One step at a time though.  Surgery first, then pcp search.  I know there’s an opioid addiction crisis, but where does that leave some of the rest of us?  I believe we have a right not to be in pain.  And the pcp had the MRI results a full nine days before I met with the neurosurgeon, yet I was offered nothing.  It seems like an injustice to me and I know I’m not alone in this.

Disclaimer:  This blog and post are my opinions only.  Seek the help of a physician for any problem.

Marijuana is legal in my state.

About andreamarjulie

Just trying to navigate a life circumvented by chronic migraines. Sometimes I write about managing with those, but at other times I am prone to deviate a bit.
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