Friday, January 30, 2015

John Hopkins Update

So my appointment arrived.  Wednesday morning we were set to drive to Baltimore only the weather had other ideas.  A winter weather advisory was issued for ice and snow.  So Tuesday night I scrambled to book us seats on Amtrak. 

Luckily we booked the train as upon waking Wednesday my car was covered in ice and basically frozen solid. The train basically raised the cost of the trip substantially, between the local train tickets and taxis needed in Maryland as well.

You don't realize how many people have problems until you see the waiting room of such a place.

I watched as all the doctors came to greet their patients, most seemed warm and friendly.  So was hoping mine would be too.  But I get the one specialist who didn't even crack a smile. Throughout the appointment when I talked to the guy he looked at the ground.  A tad stuffy might be a way to describe him. 

He didn't truly listen to what I was saying.  This was evident when I received his report which included the wrong details such as my right fingers experience numbness/tingling when it's my left.  Or that walking brings on the attacks more than anything when I specifically stated numerous times sleep brings the worst attacks on. Back to the appointment....

He sat down at a computer, basically rambled off question after question.  The amount of paperwork I had to fill out before the appointment made me wonder why he even bothered asking all the questions again when the answers were sent to him weeks ago.  I was told my case file would be extensively reviewed beforehand, if they didn't think they could help me they would not even accept my case nor bother having me come all the way there.  Which now looking back seems rather bogus.

Long story short his diagnosis Migraine Spectrum Disorder, turns out there is such a thing as vertiginous migraines which causes vertigo unlike regular migraines associated with pain.  It has also created a chronic subject dizziness also known as space motion disorder.  Basically my brain can't seem to compensate for  damage, a damage that no one is quite sure how to came be the first place.  Was it the migraines that caused the damage, or damage that brought on the migraine disorder. They don't have an exact answer as to what brings on the disorder but was told my past concussions, ear damage, low blood pressure could be contributing factors.

He had no explanation as to why I experience numbness or tingling in my left fingers or feet during dizzy spells.  Nor why I have significant imbalance or why I even failed some of their tests.  And he had no magic pill to offer. So why bring me all the way down there to tell me that. Something they could have easily just decided from reading my huge medical file, no?

It's hard to understand how a migraine disorder could bring on dizzy spells and vertigo when doing such things as using the computer, watching tv, reading a book or even simply trying to sleep.  Even the doctor wasn't able to fully explain the how or why of it.

When asked if I would ever be able to work on the computer or read for long periods of times again, he said maybe with time but he could not say for sure. There are medicines they could try such as anticonvulsants, migraine medicine, diuretics, beta blockers, etc. but nothing is guarantee as some people see good results others don't.  It would involve me basically being a research mouse of sorts. Ironically many of the medicines come with dizziness as a side effect. So some could actually hurt more than help.  Mild exercise was suggested such as Tai Chi or Qi Gong. Suggested trying vestibular physical therapy again even though it made me very sick when I tried it a few years ago.

I asked him if he realized how debilitating this is. Explained to him I needed a better explanation as to how to heal the migraine disorder but he had none. He just kept saying it would take time, even though I've given it time over five years now and it hasn't gotten better. He kind of just looked at me blankly. 

He said he would type up a report, both my primary doctor and I would receive copies.  From there she could handle his suggestions.  My doctor happens to be out of the country until March, but I know she isn't going to be happy about it as she wanted my care to be handle by an expert in that specific area not fall on her. I read the report it offers little insight but as to what I already listed above. And gives her little to work with.

All the cautious optimism I felt beforehand quickly faded.  In some way felt as if I was right back at square one with no concrete solutions. Such is life I suppose.

Ironically in the past two weeks since then I've learned of two women with very similar issues.  Both traveled the country to see the best including Hopkins, Mayo Clinic, etc, all were told they just don't know the origin of it nor how to completely fix it either.  It just makes no sense with all the technology we have these days yet still so much remains a mystery. Honestly just like the specialists I don't know what to do.

After the appointment there was such a sense of hopelessness, felt so defeated.  The train ride home felt incredibly long when all I wanted to do was curl up in bed and have a good cry.  Truth is crying can be so freeing at times as it helps release all the pent up emotions.  It's a cleansing of sorts.  Making way for other energies and emotions. And questions such as....

Where do I go from here?  Since my visit that's what I keep asking.  Yet there is no easy answer, seems as if it's going to be a process of trial and error.  The quick fix I was hoping for is just not available.  At this point my intuition feels it might be time to turn to more eastern philosophies and alternative healing ideas. 

The journey for healing continues, where it will take me is any one's guess.  Faith, hope and love will hopefully guide me along the way.












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