Sunday, August 1, 2010

Change is a Comin'

WARNING...long winded post!  Sorry...had alot to say today! =)

I'm not sure if anyone noticed, but I changed my subtitle.  It used to say "Trials and Tribulations of Migraine with Aura, Chronic Daily Headache and Occipital Neuralgia."  Now it just reads "Migraine Disease."  As an RN, Migraine sufferer and Google junkie...I thought I was pretty knowledgeable about all this migraine stuff.  I've listened to doctors, read books, read the internet, listened to friends, read all of your migraine blogs...etc...etc.  One book I hadn't gotten to reading however, was Teri Robert's book, "Living Well with Migraine Disease and Headaches."  I am now reading it on my new Barnes & Nobles Nook that Jesse got me for my birthday.  I am realizing it should have been the first resource I went to when I started having these damn chronic headaches.  I changed my subtitle because, now that I think about it, I am not quite sure what type of Migraine Disease I even have!!!  When I go through the classifications according to IHS, I feel as if I fit into every category!  I have been told by different doctors that I suffer from Basilar Migraine, Migraine with Aura, Transformed Migraine, Ocular Migraine (correctly called Retinal Migraine) and/or Occipital Neuralgia.  All of which have different treatments.  So which is it?  Certainly I can't possibly have all these types!   I also realized from Teri's book that I am using some terminolgy wrong.  As a nurse, that is not exceptable to me!  Although I have to admit, unless you are having a baby or coding, I don't know much of anything else!  So, Teri...if you ever read this post...I will try my best to use correct Migraine terminology!  You have taught me so much so far! =)

So, since I am talking about migraine....I may as well tell you, I had one hell of an attack this weekend.  Maybe one of my worst. I guess the best way to tell you all how it started would be to be quite candid.  Although it is embarassing!  I'll give you the short and sweet version.  I have been experiencing horrible abdominal issues.  I am sure from my meds, although I have always had some issues, even before migraines took over.  On Thurs, after my mom's bday celebration, I had taken some laxatives (maybe too many).  Well, I was up all night with fluid coming out of every orifice.  Nice, eh?  Anyways, as I posted previously, I spent the night on my bathroom floor because I was so sick.  Well around 2am Friday, a terrible headache started to set in.  On Friday night, I thought I was dying.  If I wasn't, I wanted to.  It was at at least a 9 out of 10 on the pain scale.  I could not move an inch without feeling as if my head was going to explode.  I did not want to make an ER trip, so head packed in ice and every medication on board, I finally passed out.  Woke up yesterday, still there.  I was shaking, confused, unsteady...the works.  I took my blood pressure several times and it was continuously elevated.  Like 140's/100's high.  Finally I gave in and called my Neuro.  He called me in some Reglan.  He told me to take 20mg of that with a Benedryl, and to take 40mg of my Corgard.  Ok...I don't know if it was the Reglan or what....I started panicking...feeling like I was crawling out of my skin.  Now I know that happens with IV Regaln...but not sure with PO.  I took another Benedryl and a Xanax and passed out.  Thankfully.  So this morning I guess I am ok.  A little on edge, been on the toilet a few times already with tummy issues, and my head pounding is down to about a 5.  I have to soldier on though...gotta take my munchkins to surf camp.

What confuses me about my headaches is that they don't fit into any typical Migraine classification.  Sometimes I get aura, sometimes I don't.  Sometimes it's visual and olfactory (I tend to smell rubbing alcohol alot), sometimes it's not.  Sometimes it's total left vision blindness, sometimes it's not.  I said before, my left pupil dilates, but now I am not so sure that my left pupil is actually dilating, or that my right pupil is actually constricting.  The most confusing part to me is the pain.  It is never unilateral.  It is always bilateral.  It is a throbbing, pounding, heart beating in my head kind of headache.  It occurs at the back and top of my head.  I often get intermittent sharp, stabbing pains throughout in various places. It's as if the top of my head is going to blow off and my eyes are being pushed out of my eye sockets.  I can't move or bend over.  I always experience nausea and sometimes vomiting.  I sometimes get diarrhea.  I am always phonophobic and most of the times photophobic.  Sometimes my nose runs, sometimes it doesn't.  I always get tired, disoriented and confused, slurred and slow speech when I have a severe attack.  I get pale and cold and numbness and tingling in my lips, sometimes hands.  My daily headaches are not as severe, but same type...although no constant accompanying symptoms. 

Personally, I am thinking I need a lumbar puncture to rule out intracranial hypertention.  But no doctor ever listens to me.  Hence the reason I am going to see a new primary care physician on Aug. 9th.  Then go from there.  Possibly then on to a new Migraine Specialist......


WinnyNinny PooPoo said...

I had every possible diagnosis in the first nine months of The Headache, and they still aren't entirely sure they have it nailed three years later. Perhaps you are on the cluster/trigemenial neuralgia end of the spectrum? I never had a scintilating scotoma until I had hemicrania continua, and I had migraines for almost 30 years.

The jabs/jolts can be a sign of one of the indomethacin responsive headaches maybe mixed in?? I use a combo of benedryl or vistaryl and phenergan to help with pain. My headache specialists says a lot of people get "cold" with extreme pain. I freeze.

Glad you have found Teri's book and it is a great resource for you! But very sorry you had such a bad weekend. From experience - don't let the pain go on so long if you can make it to the ER.

S.I.F. said...

Hopefully someone can help you to find some answers soon lady!

Jessica said...

I do think there is something to the Occipital Neuralgia theory as I have pain all along those nerves at the back of the head. Which is where the stabbing pains come from. But who knows!?! Also, I don't take Indomethacin, so not from that. Or are you meaning a rebound headache from my other meds? Still...who knows! I am very careful to limit my weekly med intake for fear of that!