Help

I made a huge decision today....then it was shattered.

I scheduled myself to go to Michigan Head Pain & Neurological Institute on March 21st for an evaluation & their inpatient program.

Well I just received a call back to inform me it was denied by my insurance company.

So...I am asking you all for names of Headache Clinics.

Willing to travel anywhere...as long as my insurance is accepted.

I am waiting for return calls from Diamond & Jefferson Headache Clinics.

Already heard from Houston Headache Clinic & they also do not take my Aetna.

Damn HMO!

Help...help...help!

Pissed

I am scheduled to work every Tuesday, Friday & Saturday.

This past Monday night I was still trying to endure a debilitating headache that had been lingering for days.

The one that I was prescribed scary pain pills for and steroids for.

Well those didn't work.

Once I get in that cycle of excrutiating pain, not much helps to decrease it.  If anything, the meds mask the agony, but once they wear off, I am right back to square one.

It's a vicious cycle.  One I am certain most of you can relate to.

Anyways, I called work at 3am Tuesaday morning to let the girls know that I didn't think I could make it in at 7am for my shift.  Luckily, the unit wasn't too busy, so I was able to be cancelled.  Which means it isn't a call-in and wouldn't count against me.  Now I am lucky in the fact that I do have FMLA to use for my head...but rarely ever use it.  Only when I am desperate.  So...I took some more pain medication and happily rolled over back to sleep.

At 1230pm my clinical manager called me and apparantly (as we nurses call it) the "bus rolled in" and the unit was slammed.  So she asked me (or rather told me) to come in.  Now, I could've easily said I couldn't and have used my FMLA to save my ass...but I don't ever do things the easy way.  Number one...I don't want to jeopardize my career I have worked hard for...and number two...I cannot bear to leave my co-workers in a jam.  So through tears I said I'd be right in.

I took a moment to sob and feel sorry for myself, then hopped in the shower.

I made it to work by 2pm.  Surprisingly enough, I was ok for awhile.  My medication was masking the pain, my starbucks gave me a little pep...and being busy keeps my mind off of my noggin.

But it wasn't long before I felt the tremendous pounding and knife-stabbing pains.  I was so nauseated and dizzy...but kept plugging along as always.

Towards the end of my shift I was beginning to feel paincked and desperate though.  Nothing was taking the pain away for real.  So I consulted with one of the OB/GYN's I work with and he suggested calling my primary care physician for advice.

I kind of  gave up on the new neurologist I'd been seeing, so currently only have Dr. B. handling my head.  So I thought I'd give my PCP a try.

Well...O.M.G.

BITCH!

She called me back at the hospital and I quote "I can't do anything for you.  Don't bother going to the ER because they won't help you, and I don't treat headaches at the hospital.  You already take (enter narcotic), so I don't know what else you think I would give you."

Let me just say...I never felt so low in my life.  Not only was my doctor telling me she couldn't and/or wouldn't help me, she eluded to the fact that I was drug-seeking.

For the record...I have plenty of drugs in my medicine cabinet to keep me high if that's what I wanted.  I'm not drug-seeking.  I was more or less hoping of the usual IV cocktail that has broken the cycle the last 2 times...Decadron, Depakote & DHE....along with a bolus of fluids.

So that all said...my mission today...if I get up the strength & motivation...find a new PCP.

Oh and did I mention she also made a snide remark about me finding a neurologist & sticking with him.  Ok...in 7 years I have had 2.  And...I will keep looking for new ones until I find someone I am comfortable with!

Sometimes doctors just SUCK!

Inspiration

My dear blogging friend, Steph from Head Wise wrote a post yesterday about creativity and displayed some of the artwork she had been working on.  When I saw her migraine photos...something totally resonated with me.  There was something so tragic and desperate about them....they were me.  Well, I was inspired to try and create something of my own.  While I don't think it measures up to Steph's photo...I gave it a shot!




Steph




Me



Rollercoaster Rides

This past week has been a total rollercoaster ride.

And not a fun, exciting, thrilling ride.

Last Monday I went to see Dr. B., the Pain Management Specialist who had done my MBB's & RFL.  He has been discussing the option of an ONS with me for quite sometime.  I have been holding off on that option as a last, last, last resort because it scares the hell out of me.  His advice last week was to either go forward with a trial stimulator, or make the appointment to go to the Michigan Head Pain & Neurological Institute, as nothing we are trying here is effective.

That being said, he prescribed me some heavy duty medication to try in the meantime.  So heavy duty...I am embarassed and ashamed to even mention what it is...or that my problem has come to this point.  It's a medication I was VERY reluctant to even try...but out of desperation...I took it.

I took the meds Monday, when I got the prescription filled, then held off on Tuesday, as I worked a 12 hr. shift and do not take medications while I have to work.  Wednesday I took another pill because inevitably after working 12 hrs. and taking no meds, I was in dire straights....as I usually am on those days after I work.

Now on Wednesday, after I took that magic little pill, I was expecting some relief.  Well none came.  I packed my head in ice as per my usual and tried to rest. 

At 1230pm, Zachary's school called to tell me he was in the clinic with a sore throat and a temperature of 103.4....so much for ice & rest.

Up I went to get my little sicky from school, and while I was at it I went and got Brendan from the middle school early because with how I (and now Zacary) was feeling, there was no way I was making 2 trips out.

So home we all go...Zachary falls asleep the second he walks in the door, and back to the ice packs I go.

Thank God for Jesse, because when he got home from work, he did homework with Brendan and made him dinner.  Zachary and I just moaned & groaned  in bed together all night.  And I mean alllll night.  His temp was up & down and he was screaming because he could not swallow.  So mama got not sleep.  Not good for my pounding, throbbing head. 

So up Thursday morning, took Brendan to his orthodontist appt., then Zachary to the pediatrician, all the while wanting to bang my head against the wall to stop the stabbing pains in the back of my head.  Zachary's throat cultures came back positive for Strep, so he got on some antiobiotics and is now back to his ornary self.

All the while, I felt like I was on a downward spiral with this headache.  Now the pain medication Dr. B. gave me was prescribed 1 every 12 hrs around the clock...but I never take narcotics around the clock.  It's just not possible when one has to function as a nurse and as a mother.  So I had been taking it as needed.  Not sure if that was when things went haywire or not.  I called Dr. B. at this point.  He called me in a Steroid dose-pack and instructed me to just take the other pills q12 hrs. until I felt better.

Friday morning I was feeling 95% better than I was.  I don't know if the first, large dose of steroids fixed my head or what.  Either way...I was thankful.  I went on to work 12 hrs. on Friday and 12 hrs. on Saturday, relatively pain free...also narcotic free.  Then yesterday (Sunday)...woke up with that relentless pounding...which has stayed since.  It is a pounding so intense it feels as if my eyes are being pushed out of my eye sockets, with random knife-stabbing pains.  Now this is nothing new to me...but obviously these meds aren't working....even a little.  But I also can't figure out if it's the meds making it worse.

After much debate and research I gave Dr. B.'s office the ok to try and get a stimulator trial approved through my insurance company.  I am still petrified...and haven't 100% made up my mind but I don't want to be 33 years old and relying on all these drugs...esp. dangerous narcotics.  It's a slippery slope.

Gotta love ice packs!

Smoothie Recipe #1

Mango Smoothie

Place 1 cup chopped ripe mango, 1/2 cup low-fat

milk, 1/2 cup ice, 1/4 cup plain low-fat yogurt,

and 1 tablespoon honey in a blender.

Blend until smooth.

Yummy!

Next Step

Just came home from an appointment with Dr. B. 

Since we agreed on the fact that I got no relief from my last medial branch block, I am not going forward with anymore radiofrequency lesioning of any more nerves.

The probable next step is...

Drum roll please...

An Occipital Nerve Stimulator trial.

SCARY!

The thought of having something mechanical that may eliminate my pill popping intrigues me.

However the thought of an implantable device freaks me out.

I was given a DVD for Jesse and I to watch so that we will have a better understanding of what I will be getting myself into.

The other obstacle will be calling and getting approval from the insurance company.

I would almost be willing to pay cash rather than deal with all that bullshit...but I am pretty certain my bank account doesn't have close to enough in it!

On to the topic of my gluten free diet...

Basically all I can say is ....What diet?

I have failed miserably.

At work this weekend I consumed  gluten with every meal!

I do plan on getting some healthier foods this week when I grocery shop though.

I am excited to try some new smoothie recipes I got yesterday.

I will post them as I make them so you can all try too! =)

To Be...Or Not To Be...

Gluten free???

Yikes! 

Not sure if it's in me...as I LOVE all things gluten.

A dear friend at work said to me today...

"When you're miserable enough...you'll try it."

Well...I think I may have reached that point of desperation.

Tough Guy




Don't mess with Zachary!

 

Still in Limbo

Had my follow up appointment with the Rheumatologist. 

All lab work came back within normal limits.

I suppose I should be elated over that fact.

But...I'm not.

I still have no answers.

And why in the world does my lab values keep fluctuationg anyway?  One visit they're elevated and out of whack...the next they're normal.  What the hell.

It just adds to my confusion.

What is interesting in my situation is that all the Neuro guys think I have a rheumatological condition...and all the Rheumy's think I have a neurological condition. 

Hmmm.

I am beginning to feel as if I have a psychological condition.

So this Dr. is calling it...

"Central Pain Syndrome"

I seriously think they make this shit up.  They just throw everything against the wall & wait to see what sticks.

Arrrrgh!

So last Thursday I did go forward with the left sided medial branch block.  Had a great visit with my friends "Fentanyl" & "Versed"...but still had a hell of alot of pain.

Not quite sure what that was all about. I didn't feel that pain before...only after the RFL did I have any real discomfort. I don't know if it was because it was actually directed at my most problematic area or what.

Being sick has also made things worse.

And...I cannot seem to kick whatever this is! 

So right now...I am back to bed. Sudafed on board, a box of tissues to my left, hot peppermint tea to my right,  new ipad on lap, eyes popping out of my head from pressure, head thumping, occipital nerves burning...

Good stuff.

Sense the sarcasm here?

So fucking over it.

P.S.  Here is some info on Central Pain Syndrome...not that I have it or anything...
http://www.ninds.nih.gov/disorders/central_pain/central_pain.htm