Birthday Fun...and Not So Fun

Well, it's over.  I hate to say FINALLY... but I need to re-coup.  As usual, my body betrayed me.  Tuesday, the 27th, was my 33rd birthday.  Jesse decided after I opened my gift to take me shopping, then out to dinner.  It was great.  I felt ok, but as with almost any kind of exertion, I fought a headache all day.  On Wednesday, my wonderful girlfriends threw me a little birthday beach bash.  We laid at the edge of the water, sipping our "grown-up" punch, watching all the kiddies playing in the ocean.  Soon after...it starting raining!  Like monsoon rain.  Luckily my girls were smart enough to set up a tent.  So we all huddled together on wet, sandy blankets under the tent and ate cupcakes.  Yup, all 13 of us...it was so cozy.  The kids had a blast playing football in the sand during the downpour though.  Really, that's all that matters.  The kids happiness.  It did eventually stop though, and back to clear, blue skies and sweltering heat.  That's Florida for ya.  It's so hot right now, the only way one would even want to be outside is to be in or near the water.  Thank goodness, I have both a pool and the beach nearby.  Last night was the end of the celebrations.  Dinner at my mom's, with the family.  And, if you all remember, I do share a birthday with my sis.  It was nice, although family gatherings definately always throw me into a tizzy!  We are a loud group of people.  By 8pm, I was dying to go home.  I needed that peace and quiet...and darkness and ice packs and medicine!!!  I don't want to live my whole life like a hermit, or a recluse....but EVERYTIME I think I am feeling better to live normally, it bites me in the ass.  I spent the majority of my night on my bathroom floor, sick as hell and in agony.

The Versatile Blogger

I was thrilled the other day when I was reading the "MigrainePuppet" and saw that she had nominated me for this blogger award!  How exciting!  I am so new to this world of blogging, I wasn't sure if people were really even reading my posts (other than the few comments I've received).  I started writing this kind of as a therapy to me, after being inspired by reading other blogs.  I was amazed how many people suffered from migraines and other chronic illnesses and wrote about it.  It's very comforting to know you're not alone.  I was a little skeptical of having other people read my thoughts and learning such personal things about me...but I'm over that! 

So I guess there are rules to follow once one receives this lovely honor...so here goes...

Rule #1:  Thank the person who gave you your award.

To my new blogger/migraine pal, the MigrainePuppet, I thank you very much for this award.  I will try my hardest to come up with new and versatile things to blog about!  So keep reading! =)

Rule #2:  Share seven things about yourself:

1. I have been a labor & delivery nurse for 4 years.  I recently completed the task of obtaining my RNC, which is a specific certification in obstertrics.  I am cross trained in labor, "catching babies", NICU holding, and scrubbing in on cesarean sections.  I am also part of our Perinatal Loss Program.

2. I have 3 siblings.  An identical twin sister, a younger sister and a younger brother.  My mother and all of us girls are RN's.  My twin sister even works on the same unit as I do!

3. I danced for most of my childhood (tap, jazz and ballet).

4.  I wish I could sing!  I sing in the car....but I can't carry a tune to save my life!

5.  I am totally in love with my dogs!  They are both Maltese.  Milo (male) is a year and Maisy (girl) is 10 mths.

6.  I am obsessed with Chelsea Handler!  I love her show, her books and I follow her on Twitter.  I even refer to her by her first name.  She's my "girl crush" I guess.

7.  I am like the paparazzi.  I take pictures ALL the time.  My boys and Jesse get SO annoyed with me!

Rule #3:  Pass the award on to bloggers you think are fantastic:

http://singleinfertilefemale.blogspot.com/
http://keeponsmyelin.blogspot.com/
http://atyourcervix.blogspot.com/
http://headwisewoman.blogspot.com/
http://migraine-ista.blogspot.com/

There are sooo many more I love and read, but those are a few of my favs!

Rule #4:  Contact the bloggers to let them know they've been nominated.

Aresenal of Weapons

So, I am one of those dumbasses that buys everything on the market that promotes "pain relief."  Here is just a small glimpse of my "aresenal of weapons".  Others are too big to fit on my kitchen table, such as the inversion table I bought last year.  What the hell was I thinking when I bought that?!?  I can't even bend over without my head practically exploding and falling off my shoulders, let alone hang upside down!  But, on the internet, I read it reduced some peoples' migraines, so I had to buy one!  Jesse must have been a Saint in another lifetime to put up with me and my crackhead antics.  Although, he greatly benefits from it daily...so I said..."Happy Valentine's Day, Honey!"  Anyways,  my lovely photo to the left shows some of my items I have come to depend on.  I have my nebulizer (which I can only use when no one is home...all the boys in my house gag when it's on!).  In it I use "Head Aide" essential oil which consists of lavender, spearmint, rosemary, marjoram, basil and vetiver (whatever that is).  I must admit though...It gives me a headache!  Haha.  Go figure.  Almost all scents do.  Should've known better with that one too.  Next up...the device that looks like a set of small red breasts...is my "Still Point Inducer".  While laying down, it rests in your sub-occipital area.  This is one of those things that is a "hurts so good feeling."  Gotta be careful getting up though, I get very dizzy.  Then I have my trusty blue ice pack.  One of many.  By far my favorite headache companion!  There's the overpriced "special headache" pillow (blah blah blah)...that I use, but I think it's too hard, so a softer, comfier pillow goes right on top!  The lovely pink eye mask is my new purchase.  I had an ugly blue one that fit too tight around my sensitive noggin, so I traded it in for a pretty pink brocade and satin one from "Cris Notti".  Let's see...there are also my wax ear plugs I use when the noise is really too much to bear, or when I'm trying to read and Jesse won't turn down the damn t.v.!  Also my yoga dvd's...although P90X yoga is my favorite, these are for those more relaxing times....and then there is my new relaxation CD (which I have yet to listen to) that my Pain Psychologist made for me.  I am seeing her as a request from Dr. B.  Although, she really hasn't taught me anything I don't already know or practice, but we'll see.  I mean I labor women through childbirth for goodness sake...I think I know relaxation techniques!  Geez!

Can't Sleep

Ok...first off...let me just start by saying this blogging thing is annoying the shit out of me right now!  AHHH!  I keep screwing things up.  Perhaps I should'nt be replying to other people's blogs or writing my own post at 1:19am, irritable as hell, in pain and doped up.  I curled up in bed tonight with Jesse and my sweet fur babies (my other munchkins went to daddy's for the weekend) at 8:30pm to watch "The Bounty Hunter" with Jennifer Aniston & Gerard Butler.  I thought for sure I'd fall asleep at least half way through the movie since I had actually gotten out of bed a couple of times today, didn't take a nap, and took my pain and sleeping pills.  Nope...movie ends...and miraculously I'm still WIDE awake.  So I slip on my new satin eye mask, throw my down comforter over my head and close my eyes.  I ended up tossing and turning in misery for 2 hours before I decided to say f-this and got up.  So here I sit, drinking "sleepy time" tea in front of the computer with really not much to say, other than having a little bitch session.  I could let you all know that I seem to be regaining some feeling back in my right neck/upper back area...too bad it's searing nerve pain.  Off to read some more blogs and hopefully not screw up anymore replys...sorry S.I.F.!!! =)-  Sweet dreams...eventually...

Post RFL

All I can say is, one step forward....and two steps back!  (or is it the other way around?)  I am now 3 days post RFL.  Obviously, if you have read my previous post, that first night was HELL.  Yesterday was much, much better!  I had alot of soreness in my neck, as to be expected, but no real head pain.  I stayed in bed most of the day, took my pain medications, and again, surrounded my head and neck frequently in ice packs.  This procedure has produced some strange sensations.  Although, strange sensations is something I am used to.  I am always having some limb go numb or have "pins & needles."  But I no longer have any feeling from the middle of my neck down to the middle of my back.  It's gonna take time to get used to.  I can feel if I have an itch, but can't really feel myself scratching it.  Although deep pressure (like massage), I can feel.  I also feel as if my skin is "crawling."  Bizarre I tell ya. 

So this morning I woke with a strong pounding in my head.  Not so good. =(  It feels full of pressure.  I can't bend or move a certain way or if feels as if my eyes are going to pop out of my eye sockets and the top of my head is going to explode.  This is something that I have experienced frequently over the past 7 years, so I am used to it.  Guess the RFL did nothing to cure that aspect.  I have to be patient though.  It takes 4-6 weeks to get the full benefits of the procedure.  But, as I mentioned to Dr. B. in the first place, I don't see how this procedure will improve my vascular migraines, nor this other pounding headache like I have right now.  But, he tells me one step at a time.  Unfortunately, I am a complicated case (as I've been told by many), that we have to try and "fix" one problem at a time.  So, first the nerve pain, then the others.  Oh and I have so many "others"......

My Radiofrequency Lesioning

I was petrified going in the morning of my procedure.  Everything I had read about RFL said it was a torturous procedure done while wide awake with a long, painful recovery.  Of course, Dr. B. assured me that was not the case, but I tend to expect the worse and didn't believe a word he said.  I mean...the internet certainly knows more than the drs., right?!?  This would be the reason Jesse keeps threatening to disconnect our internet modem...and banning me from WebMD.  Anyhow, when I got to the surgery center, I was pleasantly surprised to find a lovely anesthesiologist waiting for me, with syringe in hand,  the second I was taken into pre-op.  She was ready to inject my fentanyl before I even had an IV site!  They couldn't get that IV in fast enough as far as I was concerned!  I longed for that relaxing, melting sensation to come over my body as at that moment I was twitching with anxiety and felt like I was jumping out of my skin.  Of course, not being able to have anything by mouth 12 hours before the procedure, I was dehydrated.  It took 3 attempts to get my IV in as my veins kept "blowing".  As a nurse, it was frustrating!  Now, I don't always get IV's right away either, but I know where my good veins are and the nurse wouldn't listen to me.  She jokingly kept saying..."Stop being a nurse and just be the patient"...although I know she really meant it.  So, finally IV in place, fentanyl on board and being wheeled blissfully into operating suite.  I was placed on the table, face down and started panicking once again screaming, "I don't feel sedated enough...don't start yet!"  Then....nothing!  I woke up in a recliner in recovery, completely dressed, sobbing and dry heaving.  I always cry coming out of anesthesia.  Apparantly I was put completely to sleep!  Yay!  (Dr. B. later told me that he does not use the old barbaric method of making the patient stay awake). So after a few sips of ginger ale and some more Zofran, I was set free.  Pain wise, it wasn't unbearable at that point.  Still the good drugs kicking in.  I felt pain only on my left side, right side...nothing.  I got home and right to sleep I went.  The rest of the day went fairly smoothly.  I took my pain meds around the clock and kept ice packs on constantly as ordered.  Then...WHAM!  Almost out of nowhere, I awoke in the evening in what I can only refer to as utter agony.  The pain in the sides of my neck is what I would describe as a deep, burning ache.  It hurt like hell.  My head was pounding so hard, I thought the top of it was going to pop off.  I had sharp stabbing pains shooting through my eyes and ears.  I could do nothing but cry and ask Jesse over and over again why I did this.  My mother's boyfriend (an ER physician) was working and I knew I could go to him for help, but I chose to wait it out.  In my mind I kept thinking "what if I have a spinal headache?" So I took every medication I had in my medicine cabinet, surrounded my head and neck in ice packs, drank some caffeine and laid flat on my back.  Eventually I fell asleep.  I awoke the next afternoon at 1pm to Jesse hovering over me, making sure I was breathing!  He does that quite often.  I am lucky to know I am being looked after and frequently checked on when I am in my medication stupor.

All the Pretty Little Pills

Here's hoping I won't need so many of these after my procedure tomorrow!!!

Grateful Today....

...for a relaxed couple of hours at the beautiful beach, watching my boys at surf camp.  There is nothing like closing your eyes and floating weightlessly in the ocean over the waves.

Present Day

As of May 2nd, I have been on a leave of absence from work.  Thankfully I work with a wonderful, supportive group of girls and everyone has been tremendously understanding thus far.  With my diagnoses of Migraine with Aura, Chronic Daily Headache (or Transformed Migraine) and Occipital Neuralgia from Dr. E. two years ago, I felt I just could not go on as I was.  I had been starting to experience other symptoms and needed answers.  After spending a week in Savannah, Ga. for my little sisters' wedding at the end of April, I felt totally wiped out.  I had mentioned in my previous post all of the testing I had had done, but never disclosed the results of those tests.  The MRI of my brain was clear, except for the venous angioma I have had for years.  The MRI of my spine was clear, except that at the thoracic region there was an incidental finding of bilateral pleural effusion.  I was then sent for a ct scan of my chest which not only validated the bilateral pleural effusions, but also showed pericardial effusion as well.  (Fluid around the lungs & heart...no evidence or symptoms of infection).  My balance test showed abnormal nystagmus (eye movement) and positive Romberg's test (loosing balance when eyes are closed).  My sleep study was normal other than showing "alpha intrusions", which apparently happens in people who suffer from chronic pain, or take medications...both of which I do!  On to my bloodwork...I have chronically low ferritin levels. (iron storage...mine ranges from 5-13, optimal is over 50), my ESR (sed rate) was elevated as well as my rheumatoid factor...(which they called positive RF).  Otherwise...normal labs.  Over the past 3 mths, I have been sent to a Rheumatologist, Pulmonologist, Oncologist/Hematolgist...and of course continuing care with my Neurologist.  So far....basically no answers other than a new diagnosis to add to my other of..."Undifferentiated Connective Tissue Disease".  I don't mean to sound so skeptical, but to me, that is like saying..."we don't know".  The Rheumatologist I am now semi-regularly seeing states that it is an "evolving" CTD, such as Lupus or Rheumatoid Arthritis, however at this point, my ANA is negative.  He suggested I start on Plaquenil to keep my symptoms from progressing, but until I have a definitive diagnosis, I chose to stay on NSAID's.

As far as my noggin goes, I was referred (finally) to a Pain Management Specialist.  He is a godsend as far as I am concerned.  He is not the drug pusher you hear about on the news or all over the internet.  While yes, he prescribes medication, he also aims at trying to fix the problem, not just put a band-aid on it.  Now...I am well aware that nothing "fixes" migraines, however maybe a longer lasting relief.  I had a facet joint injection (medial branch block) done on both sides of my upper cervical spine under conscious sedation a couple of weeks ago.  I did recieve VERY short lived relief....but that was a positive diagnostic sign.  On Tues, July 20th I am having Radiofrequency Lesioning done in hopes to improve my Occipital Neuralgia.  I am keeping all fingers & toes crossed!!!

I presume if I can get my head under some semblance of control, I may be able to find relief of my other symptoms of fatigue, muscle weakness (legs), aching, twitching, stiffness, pins & needles sensations, loss of concentration/coordination, unsteadiness...etc....

 The list seems to go on and on and on....

Dr. B. (my pain management specialist) is convinced it is all neurological and not rheumatoid based on his physical examination.  In the near future he is setting me up to have an EMG and nerve study...possibly a lumbar puncture.  Guess time will tell.  Until then, here is my current pain control regimen....

Medications:
Naproxen 500 mg (for my effusions)- daily in am
Omeprazole  20 mg (for my tummy b/c of NSAID's)- daily in am
Fiber supplement (b/c of opiod use)- daily in am & pm
Magnesium supplement- daily in am
Opana ER 10 mg- daily in am
Norco 5/325 mg- PRN (for breakthrough pain)
Cymbalta 60 mg- daily in pm
Corgard 20 mg- daily in pm
Klonopin 1 mg- (to sleep)

Other:
Yoga- as often as I can
Meditation- learning from a pain psychologist
Ice packs- I almost always have an ice pack on my head!!!
Sunglasses or eye mask- when I can't stand the light
Ear plugs- when I can't stand the noise
Lots of water- only recently (getting smarter)

Trial and Error

So I have been seeing my current neurologist, Dr. E. now for over 2 years.  There have been many ups & downs, as all of you with migraine would know.  I was recently about to give up on him as I felt as if we were at a standstill.  I'd like to share some of the treatments I have tried...and unfortunately, most of which have been unsuccessful.  I cannot for the life of me remember the order in which I was treated, however here is a brief (tried to be brief) rundown!

Medicine ( both abortive and preventative):  Cymbalta, Corgard, Topamax (again..another story to come), Lamictal, Piroxicam, Soma, Xanax, Fioriciet, Seroquel, Depakote (IV), Magnesium (pills & IV), Maxalt (sublingual), Treximet, Toradol (IM), Imitrex (Sub-Q), Demerol, Phenergan, Medrol Dose Pack (steroids), and probably more I cannot recall.

I have had Occipital Nerve Blocks with marcaine & steroids several times, Trigger Point injections with marcaine several times, and Botox 4 times.  I have tried Physical Therapy, Acupuncture, Massage, Chiropractic, and TENS.   I have had countless MRI's of my head and entire spine, Balance testing, EEG and a sleep study, as well as countless labwork.

I was taken to the ER one night by Jesse after giving Topamax another try.  Apparantly I was acting very strange, slurring my speech and not making any sense.  When I arrived in triage, my BP was extremely elevated, the nurse noticed my confusion and disorientation, and stated I had left sided facial drooping.  I was immediately rushed back to have a CT Scan to rule out stroke.  Of course, it was negative, as I knew it would be.  However, I was taken off of the Topamax again as the ER dr. told me he has seen patients go into psychosis as an adverse effect and obviously I wasn't tolerating the medication as before, as well as it was not controlling my migraines and headaches at all.

The second time I was taken to the hospital was this past October 2009.  I had taken a Maxalt (sublingual) for the second time.  I was in the car rider line waiting to pick up my sons from school.  Shortly after it dissolving, I felt my left arm get heavy and I had this terrible ache.  Then I started feeling as if I couldn't breathe.  I tried to relax as I wasn't sure if I was just making myself panic.  I got home and my mother came over (an RN) and decided to take me to the drs. office.  From there I was taken via ambulance and admitted to the hospital for 3 days.  Apparantly I had had a coronary vasospasm, as well as refractory migraine and profuse vomiting.  Which of course then made the drs. decide I needed an Endoscopy.  It was basically negative other than some Gastritis...probably from all the meds and vomiting (obviously)!

Fun times I tell ya!