Thursday, August 19, 2010

Oh Lazy Day

I am sitting here, drinking coffee, reading blogs...totally unable to motivate myself.  I woke up feeling exhausted after a rather fitful night of sleep (I should say, no sleep).  My legs have really been bothering me this week.  I don't know if it's related to this somewhat vague diagnosis of Undifferentiated Connective Tissue Disease or what.  I kind of took that diagnosis and threw it out the window.  Mainly just concentrating on my head troubles.  Maybe there is something to be said for this CTD.  My legs just ache down to the bone.  I feel a need to have constant pressure on them...or move them.  Last night while watching a movie with my boys, I made Brendan (my oldest) lay across my legs.  Then in bed, made Jesse do the same.  It was either do that, or move & kick all night long. Which I did anyway.  Jesse literally found me laying under our mattress one night to get relief.  I crave pressure. 

My tremors in my hands are getting so bad, I am noticing difficulty writing.  I shake doing any fine motor skill.  I was scrubbing in on a cesarean section once and the doc told me to lay off the coffee!  Well, I shake & twitch without coffee.  I hate to admit, I have been heavily relying on xanax to help.  Scares me because the more I take...the more I need to relax me.  I do not know if the tremors are related to my other ailments or genetic.  Probably both.  My grandfather had essential tremors and my father has been on Parkinson's disease medications for his tremors for years.  Maybe that's whats next for me.  =(

I saw Dr. B yesterday.  It was my 6 week follow up for my Radiofrequency Lesioning.  We both were basically in agreement that it did not completely help my head.  However, I do seem to be feeling better this week in that aspect.  But...between the RFL and my Botox kicking in...I feel like I need a neck brace!  It's taking all my energy just to keep my head upright.  I lean on things as much as possible.  So now I am having some intense shoulder and neck muscle spasms as a result.  Oh joy!  It is ALWAYS something! (boo hoo).

Dr. B's very strong recommendation...send me to the Michigan Headache & Neurological Institute in Ann Arbor.  He has some pull there, and says they're one of the best.  I gotta do some research, then decide.  So we'll see...

But for's a lazy day for me!  Too tired & sore to do anything.  Then of course...the guilt sets in.  But not guilt.  I was uplifted by a post I just read from "The Tramadol Diaries."  So off to "Eat, Love and Pray" today!

Monday, August 16, 2010

Another Good Day

Spent another good day at surf camp with the boys yesterday.  I am thrilled to say, I have been headache free for 2 days.  I don't remember the last time this has happened!!!

Wednesday, August 11, 2010

Back to "Normal" Living

Yesterday I finally went back to work.  I was nervous the night before and when I woke.  Scared I couldn't get through a 12 hr day with no pain.  Once I got there though, I was ok.  I work with such a supportive group of people, I knew I could do it.  Plus Jesse had told me to call him immediately if I felt I couldn't get through the day and not to force myself.  He even said if you have to quit..."I'll get a second job."  Obviously I don't want to quit my job, but having the knowledge that I could walk away if I absolutely needed to was comforting in a weird way.  We were pretty busy at work so all the running around and catching babies left little time for me to acknowledge my head.  I guess working is a good thing for me.  When I am home, I tend to notice every little twinge of pain and dwell on it.  I have realized over the past 3 mths that I have no coping skills of my own.  I may need to get help with that.  As a nurse, I can teach my patients copings skills, but I can't wrap my head around it when it comes to my own problem.  So after being at work for over 12's an understatement to say I was exhausted.  I literally felt sick from fatigue driving home.  But I am taking it slowly, only working 2 days a week to re-adjust.  And I remained headache free for most of the day...only needing to drink some caffiene and take an 800mg motrin.

I just came back from an appt. with Dr. E.  It went well.  Now I kind of feel like I don't want to go see another Specialist at this point.  We had a really good talk and made a new plan of action.  Plus, he said if we don't progress, he is sending me to Tampa to the "House" of migraines.  I did actually see the dr. he is referring to once, but she agreed with his plan of care, so I never went back.  I also got a round of Botox while I was there.  Still not quite sure if it really helps, but my insurance covers it, the dr. believes in it...and it leaves me wrinkle free so I keep doing it.  In a few minutes I am going to take a Sumatriptan injection with a Xanax to try and banish this headache that is now starting to creep in.

Monday, August 9, 2010

New Doctor & Going Back to Work!

I had my appointment this morning with my new primary care physician, Dr. W.  I really liked her.  Thank goodness!  I was so hoping I would.  She was extremely thorough with me...more so than any other PCP has ever been.  She did a complete head to toe physical and went over my medical history extensively.  Even at the end when I started sobbing like a lunatic, she handed me some tissues and was very sweet.  She gave me a referral to a new Migraine Specialist.  I don't necessarily want to "fire" Dr. E. (yet, anyways), but I do want some other opinions.  Dr. W. said she'd leave my complicated head up to the neuro's!  Good choice on her part!

So tomorrow is a big day for me.  Back to work after an over 3 month leave of absence.  I am petrified!  I know it's like riding a bike, and I know my job well, but I am still nervous.  I am praying for a no migraine or headache day!  Pretty tall order considering I have one almost everyday.  As long as it is somewhat bearable and I have no vision loss, I think I can do it.  Since being discharged from the hospital I have had a headache most of the time.  There have been times where it has gone away, but come back again.  I am sure most can relate to that!  So today I picked up my new prescription of Sumavel DosePro and just took an "injection" to see if it would help.  Again, I want so badly to be pain free when I wake up at 530am!  Well, first of's such a weird delivery system!  It kinda hurt...and it left a dime size indention in my thigh that bled for 30 minutes!  I hated the feeling the medication gave me, as I do with all triptans, but took an ativan and got through the initial side effects.  Now, I am just itchy all over!  Is that a bad sign?

Sunday, August 8, 2010

The Fight Continues...

Last weekend I had a terrible migraine attack.  Well, when I woke up Monday morning, it was still there.  I had tried all my meds in my cabinet, plus the ones Dr. E. called in for me on Sat.  I did my usual ice routine in the dark.  Nothing was relieving the throbbing, pounding pain.  These headaches tend to feel as if someone is inside my head twisting and banging on my brain while intermittently stabbing it.  Nice and graphic, eh?  I also couldn't seem to get a handle on my blood pressure, even after a double dose of my Corgard.  Obviously pain elevates BP.  Anyway, as soon as I woke up on Monday morning, I called Dr. E's office to see if I could get in and maybe get a shot of Toradol or something to get the pounding to go away.  It had to stop as I needed to return to work on Tuesday!  So they scheduled me to come in at 240pm.  After a hellacious hour wait in the waiting room with bright lights and a blaring tv, I got taken back.  Don't migraine specialists think to make their waiting rooms more suitable for migrainuers?  By this time I was back to wanting to die.  I was crying, feeling so helpless and defeated as always.  Nothing takes this pain away!  I re-explained the events of the entire weekend, the pain, the vomiting, etc.  I also made mention that in 3 weeks I have had a 13 lb weight loss.  I am sure due to meds, pain, vomiting, anxiety, etc.  Well Dr. E. and his ARNP bluntly said..."You look sick."  Well no shit!  So I was sent over to the hospital and admitted (very relunctantly on my end I might add).  For 5 days.  Diagnosis: Status Migrainous, Hypertension and Dehydration.  Finally something was being done.  Even if it was the day before I was to go back to work and "normal living".  So while I was there, I received IV hydration, and a plethora of IV medications such as Potassium, Decadron, DHE, Depakote, Morphine, Zofran, Ativan.  I also finally had a lumbar puncture done.  Although, results were send out, so still pending.  The second to last night I was there, a cardiologist was called in because my HR was dropping to the 40's and some arrhythmia's were showing up on my telemetry monitor.  Go figure.  I had an echocardiogram and everything was stable.  I do have mitral valve prolapse, but have since childhood.  My medications were changed and I was discharged Friday afternoon.  Yesterday I was a freaking basketcase.  I could not stop crying!  I am assuming it was medication related.  I like to think it was anyway and not just me completely falling apart.  Today is a much better day and I am "getting by."  Still had a headache yesterday, not so much today. I am going to see my new primary care physician tomorrow morning and I think I am going to take the step to ask for a referral to a new neurologist.  I need that new set of eyes and ears.  I can't continue on this path.  I am tired of fighting.

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......