Hemiplegic Migraines?

A couple of weeks ago, I had my second full blown hemiplegic migraine.  My first ever was in November.  This one was worse. Instead of it paralyzing just one side of my face, it ultimately paralyzed both sides of my face and started affecting my swallow reflex.  That's when I decided to head to the ER as I had only seen the neurologist once so far, and he never addressed what to do incase of another hemiplegic migraine.  All he gave me in way of pain medication was Toradol which did nothing for the daily migraines much less these.  Then to top it off he never returned my phone calls when I would call him to tell him it wasnt working.  I am needless to say waiting to see a new neurologist.  Well, anyway, on the way to the ER, I began to get some movement back in one side of my face and not wanting to deal w/ the ER staff (plus my fear that if I got there and the movement was back they'd think I was just wanting drugs) I had my husband bring me back home to see if it continued to get better.  I had taken the medicine that I had before I went to the neurologist that seemed to help w/ the bad daily migraines (I just didnt' take it daily, just on the ones I couldnt handle).  I figure that it had started to take effect.  Several days later though, I was still suffering some of the effects from it, esp the nausea, headache and facial numbness.  Just no paralysis.  I ended up in the ER anyway.  And I ended up calling the neurologist.  Ugh!  But I had no one else to call that knew what to do!  Of course he was rude like he was during the office visit!  And basically said I should have called during the week.  He also tried to tell me he never got my phone calls!  What BS!!!!!!  I told him it was awful funny, he did respond to one call about the concern I had about a chemical at work that I was exposed to and in the same phone call I had stated that the medication wasnt working.  However, his nurse did not address that issue when she relayed his message to me!  I also told him that I only called him as a last resort and to find out whether I should go to the ER or if he thought Urgent Care would be ok!  Of course urgent care didnt want to touch me as they couldnt make sure that I hadn't had a stroke, so they said they would just send me to ER.  I had really hoped that the one in November was going to be the only one I had.  I havent been able to work in 4 months due to the nature of my job and the frequency of the regular migraines on top of the hemiplegic type.  Even when I dont have a migraine, I am so ill from having so many that I can barely function.  I still worry that there is more going on than they have found.  I have lost 20lbs during this as well as my other symptoms besides the migraines.  Yet when I go a doctor, they only look at the migraine and how to prevent them, not the cause, if there is one.  I understand sometimes there is none, but I worry that mine may be a symptom of something else.  And all my PCP does now is ask me what I want him to do.  I want to scream "I want you to find out what is wrong w/ me and fix it!  You are the doctor!  Not me!"  Nobody has done any tests besides what was done in the ER the day of my first HM, besides when I went to an ENT and Gyno.  I took it upon myself to go to them.  They actually did something to make sure it wasnt anything related to their fields.  Nobody else has done as much as a blood test.  I am sooooo scared!  And nobody will listen!  Like right now, my legs hurt so bad, for no reason!  My blood pressure spikes and it use to be really great!  I am loosing my hair!  I use to have enough hair for 3 people!  Not anymore!  And to top it all off, I get a text from a lady at work telling me I need to get off all my medicine and come back to work!  That its my medicine doing it to me and that i'll feel better if I just quit taking it.  All because there is one medicine I take that she use to and it caused her to have headaches.  People dont understand!  They think its just simple headaches!  I tried to tell her this is more than just a simple headache.  Medicines dont generally cause headaches that paralyze your face temporarily!  Even my dad use to think that, until I sent him a link to a website about hemiplegic migraines.  He called and apologized to me.  Of course the only person who has seen me when this has happened has been my husband.  But again, I still wonder if that is really all that is going on or if that is even it.  And if it is, how do you even know when/if they are under control?  How will I know when it is safe to go back to work or will it ever be safe to return to where I work (if they let me, due to the safety risk)?  I am really having a hard time coming to terms w/ this diagnosis, but I dont know if its because of the questions I have or because I honestly fear there is something they are missing!  Can anyone tell me what kinds of tests they had done to diagnose them?  Sorry this is so long!