Decisions...Decisions

Good morning everyone!  I say that because it's 730am and I have been up for about 2 hours now!  Which is very unusual when I am not working...which I have yet to do in over a month.  I continue to be on my leave of absence for the rest of this week and the beginning of next week.  I follow up with my Neurologist next week to plan my next step.  Right now...it's totally stressing me out as I have had quite some time to think about my current work situation and I have had some opportunities arise...so I have decisions to make, that only I can decide.  I honestly DO NOT know what to do!  I'd love the Man upstairs to just tap me on the shoulder and whisper into my ear and tell me what to do.  My decision could either turn out to be great for me or terrible for me...but I will never know if I do not take that leap of faith.  However...it involves my livelihood and the wrong choice could be detrimental...or a blessing.

How does one choose?!?

On a different note, Wednesday I had my EMG and nerve conduction study.  To say I was nervous is an understatement.  I tend to have severe anticipatory anxiety...and in reality it wasn't that bad.  The electric "shocks" throughout my left leg were a little uncomfortable...but I tolerated it quite well.  I barely felt the zaps to my arm...and the needle portion of the test didn't phase me a bit.  Sad to say...I am used to lots of needle pokes and have almost become immune to them.

The reason being that I hardly felt any of the currents going through my left arm is because I do in fact have neuropathy in that arm.  Really still not quite sure why, but it explains the aching, numbness, tingling and weakness.

As far as my legs, all came out all clear.  The Neuro that performed these tests concluded that the problem with my legs going numb is most likely stemming from a problem in my spinal cord and not my peripheral nerves.  So that remains a mystery.

He prescribed an elbow brace, which I have yet to find one that I'd be willing to wear, to keep me from bending my arm and causing further nerve damage.

I tried on several at the store. One was this hideous long, bulky black thing and I could still bend my arm, so I figured that is defeating the purpose.  I then tried wrapping an ace bandage around my elbow, which he suggested as an alternative...but after 5 minutes, my arm was blue and obviously cutting off circulation.  So I took it off and haven't tried it since.  Obviously I just need to wrap it looser...but I am being stubborn.  I can't function with my arm being straight all the time!  I am left handed for goodness sake! 

What I am wondering, and will have to ask my doctor next week...is the neuropathy and nerve damage permanent?  I can't remember that from nursing school...I suppose I could Web MD it.

As I mentioned previously, I was given prescriptions for Amitriptyline and Verapamil to control my head.  After several weeks of the Amitriptyline and titrating up and weaning down on it to find the right dosage for me...I have come to the conclusion it has proven to be ineffective.  Not only has it done nothing to improve my chronic headaches, it is also not controlling my anxiety issues as the SSRI's did, and the side effects are so tough to take.  So my doctor told me if I felt that it wasn't working, I could stop it.  It's been 3 days now without it.

That's what I really like about her...if a med isn't working, she is quick to say get rid of it as opposed to keeping me full of drugs just for the hell of it.  My goal is to take as little as possible.  Previous physicians have had me on a bazillion pills that were not even doing a damn thing!

I am continuing with the Verapamil ER 120 mg every night before bed.  I have tolerated it well with no side effects.  The only issue is I have been very tachycardic with my heartrate consistently between 100-150 bpm.  I am thinking the calcium channel blocker is not controlling my blood pressure and pulse quite as well as the beta-blockers did, but it could also be the rise in anxiety.

For the anxiety I have been taking Xanax as needed.  I used to take it almost every night as it helped me sleep, but over the past 2 months or so, I stopped that habit because I was building a high tolerance to it.  However, over the past week or two, I notice I am needing to take it during the day sometimes to calm me down and hopefully lower my heart rate.  I am pretty sure I will need to go back on an SSRI next week.  Which I am content in doing.  I've been taking them since my twenties when I was experiencing panic attacks and agoraphobia.  If only one also worked as a Migraine preventative.  As far as I know, none of them do...but does anyone have any information on that?

So my current treatment plan has really dwindled on the pill popping front...and I am excited about that!

I am taking:
-Verapamil ER 120 mg QH
-Magnesium 400 mg daily
-Xanax 0.25-1mg as needed
-Baclofen 10mg as needed
-Norco 5/325mg as needed
-Phenergan 25mg as needed

Notice:  only ONE daily med!!!  Whoo hoo!  The Mag I do take daily...but supplements don't count to me!  I actually started the Mag again to help counteract the inability to go to the bathroom due to the the other meds...plus it is supposed to be good for me.
In regards to the Baclofen and Norco, my Neuro would like me to stop taking them as the Baclofen hasn't done much for me and the Norco causes rebound HA...but out of desperation I take them as rescue meds until my current prescriptions run out.

That is one topic I plan on bringing up next week...rescue meds!  Essentially...I have none that she has prescribed for me...and I believe rescue medications are just as important as preventative medications when dealing with the unpredictableness (is that a word?) of Migraine and chronic headaches.

I just have no idea which ones I could take.  Not only did I not tolerate Ergots and Triptans...this Neuro won't give them to me anyway because of the Basilar Migraine issue...they're contraindicted...but opiates sometimes make it worse, although if I take enough they just knock me out.  I have never tried Tramadol, which I have heard some of you take...wonder if that would help, or maybe go back to Fioricet?  Who knows!  Now I do know those can also cause rebound HA, but I am VERY careful about that.

Any suggestions would be awesome....I love to hear what other people are taking to try and control their symptoms!

Wishing...

...I was back on the beautiful, sandy beaches of Barbados!

What A Weekend

This weekend was spent babysitting my three nieces while my sister was on a mini-vaca in Puerto Rico.  My friend, Kelly came along with her gang of four.  That left two adults with nine children!

It worked out quite well.  Kelly took care of the seven bigger kids the majority of the time, while I laid around and was on baby duty.  I am used to juggling the care of multiple newborns at once...so it was a piece of cake with two.  I have a routine at work with my babies.  Change diapers, vital signs and meds, feed and back to sleep for 3 hours. I tried to get Kathryn and Sydney on that schedule and for the majority of the time it worked, except the sleeping part.  They wanted to "play".

We took the whole group to the park down the street, watched the older ones kayak at the beach in Jen's backyard, set up sprinklers for the younger ones to run through and baked a ton of cupcakes.

I ate more this past weekend than I have in quite awhile.  We ordered pizzas, sandwiches and made homeade macaroni and cheese with hotdogs.  When I say we...of course I mean Kelly!

It was nice to get away and feel like I was living a little outside of the four walls of my bedroom.  But...by the end of the 3 days...I was ready to go back to my little hole.  I now remember what it was like to get up every couple of hours in the middle of the night for feeds...and didn't miss it.

I have to say though...since being home...I am missing those sweet faces, baby toes, ruffled little butts and their yummy smells.  I could snuggle all day long with a baby sleeping soundly on my chest, burying their little faces in the crook of my neck.  I am definately in my element that way.

On to some updates about my ever puzzling health.  I continue to be on a leave of absence from work.  While my employers and co-workers are nothing more than supportive, I have this tremendous amount of guilt and anxiety about not being there and letting everyone down.  So I am a little stressed about that.

I went and saw yet another Neurologist yesterday...and loved her!  Let's see if we can make it past the honeymoon phase and last long term.

She...and I kinda like the fact that she is a she...took the standard medical history and did the usual neuro exams.  She said my symptoms reek of something neurological but it could be difficult to pinpoint the cause.  She informed me that sometimes people have symptoms and never find out what is causing them, in which case we just treat the symptoms.  That is kind of difficult for me to accept as I want an answer to this mystery.  I had more labs drawn and next week I am having an EMG and nerve conduction test. 

When I was discharged from the hospital a couple weeks ago, I was put on Amitriptyline.  I had worked my doasge up to 50 mgs every night before bed, but I am not tolerating the side effects very well, so she decreased it to 25 mgs every night.  I still woke up groggy this morning and feel like it is sucking the moisture out of every cell in my body.  Hopefully it'll get better.

She is switching my beta-blocker to a calcium channel blocker.  While this will not help with my daily chronic headaches or my numbness and tingling she is hoping it will keep my basilar migraine attacks at bay...keeping me from any more admissions to the hospital.

I explained to her what happened with the Botox and how Aetna has now denied coverage because of my hospitalization due to migraine and them assuming it is not effective.  She offered to write a letter to Aetna explaining that I was not actually hospitalized for migraine but for other neurological symptoms.  See why I loved her?!?

It also didn't hurt the fact that she called my previous doctor "sloppy" and was disappointed in the fact that he was prescribing medications specifically contraindicted in basilar migraine. I got some satisfaction out of her basically calling the guy an idiot.

What I liked the most about her was that she listened.  She listened and believed every word I said.  Rather than just put my symptoms in this neat little box of complications from basilar migraine she is investigating further causes.  Migraine doesn't cause your legs to be numb, blue and cold.  They look like they belong on a corpse.

For the next 2 days I am off to be pampered.  My dear friends are cutting and coloring my hair and giving me a massage and pedicure to help me feel better.  I love having close friends in the spa industry! 



Basilar Migraine or Not?

Not sure where to begin with my latest update...or lack there of because I still have no answers. 

Surprise...surprise.

On my birthday, July 27th, I noticed strange sensations in my left leg and foot.  I shook it off and thought it was because I sat on my ass in a 10 hour computer class all day.  It was numb and tingling...a "pins & needles" feeling. 

Over the next week or so, I noticed it getting worse...and it was not going away.  While it is very annoying...it was also beginning to be painful. 

Eventually I started feeling the same sensations in my left arm and hand.

On August 17th, I had my second 10 hour computer class.  I realized throughout the class that I could also not hold up my left arm or write.  I am left handed, so not so good.

It just so happens that sitting next to me was my Neurologist's wife, our hospital Stroke Coordinator.  While we chit chatted about our common history of Migraine, I told her the other symptoms I started experiencing.  She sent her hubby a text, and he called me with an appointment for the following morning.

He was of the opinion that my left sided deficits were due to Basilar Migraine.  While yes, my head hurt as it does every single day, I did not feel like it was Migraine.  Although he explained it was still probably symptoms of one even though I didn't have any aura as I usually do.  That kinda made sense so we came up with a plan.

He gave me 2 IM injections right then and there.  One was DHE, the other, Reglan.  I was to come back to his office every 8 hours for the next 2 days to have the injections.  So...I did and I wanted to jump out the window.  I felt like I was crawling out of my skin.  I felt so jacked up and anxious.  I now realize it was from the Reglan and I will never consent to getting that medication again!  For a week I had full blown panic attacks.

Anyways...he also sent me for yet another brain MRI...which was normal as always.

Over the weekend he sent me home with a "rescue cocktail" of Lortab 10/500 mg and Ativan 2 mg to take every 8 hours.

They did nothing for my symtoms, as I knew they wouldn't.

On Monday the 22nd, he called me and asked if my arm and leg were magically cured...of course, they were not.

So...he had me direct admitted to the hospital for "Status Migrainosus".  Which I still did not believe I was experiencing...but really, who am I?

So I VERY reluctantly went.  All the while continuing to have severe panic attacks from the Reglan.  I was quite literally a basket case! 

I was given cocktails of IV Depakote, DHE, Phenergan and Benedryl for 3 days.

It sucked.  The DHE made me so sick.  But if there is any bonus...it was I couldn't eat or keep anything in my stomach and I lost 5 pounds!  Gotta keep looking at the bright side, right!?!

I also had an MRA/MRV the 2nd day I was there.  The results came back with a possible blockage in my left transverse sinus (back of brain).  So the Neuro (oh and not mine because he failed to come see me at all while I was in the hospital, even though he admitted me) explained that I would need a CT Venogram to confirm and if there was a blockage, I would need a shunt placed.

I had the CT Venogram on my 3rd day there.  The report came back as asymmetrical transverse sinus, probably congenital. I was told that could be normal and that a shunt was now not necessary.

I had had days of medications that were not helping my symptoms and my diagnostic tests appeared to be normal, so I requested to be discharged on Wednesday.

I continue to have left sided weakness and numbness and tingling.  I continue to have my usual daily headaches and all the other wonderful accompanying symptoms I have been experiencing for years.

I have yet to have a follow up with my Neuro, and I have been calling everyday for a week, with no return phone calls.

I went and picked up all my medical records, discs of MRI's and reports of all my testing and sent it off to a specialist up north...so hopefully I will hear something next week!

I got a kick out of reading the progress notes written by the neuro who saw me in the hospital.  He made numerous mention of decreased strength and sensation on my left side...yet no one seems to think it is abnormal for a 34 year old female to be experienceing this, nor is anyone coming up with a plan of care.  Again it was said to be a characteristic of Basilar Migraine.  Really?  Since July 27th?  Doubtful.

I went and saw my Rheumatologist so I could  feel like I was being somewhat proactive.  He, of course, said he believes it all to be neurological, however ran a bazillion labs, which I hopefully will get the results on Tuesday.

Meanwhile, I have been off work since August 9th and have no clue what I am supposed to do now.