New info

I had an appointment at my pain management doctor's office today.  I found out that I do in fact have arthritis in my neck by the MRI done, and also by the nerve conduction study done there is an issue with the C7 nerve on the right.  I had been thinking maybe I was having carpal tunnel symptoms on the right  but this could obviously be caused by that nerve.  They are starting me on a medication called Limbrel.  I was told it was an antiinflammatory so I immediately looked it up.  I cannot take NSAIDs anymore so I was just not going to get it filled.  But it actually sounds good.  It is a "medical food" product according to the website and is not actually an NSAID so is not supposed to cause GI issues.  Who knows maybe it will help the headache.  One can only hope!

Mornings

Blah.  I hate the word itself now.  Just felt like griping this morning.  I don't think I have ever described what my days including mornings are like.  This illness is really destroying the joy I used to get from mornings.  Some people are morning people and some aren't.  I never really claimed to be a morning person but I did used to enjoy getting up early to start my day so that I would be done with my work earlier in the day.  The hemicrania continua has turned mornings into something awful.  I can't just get up and cheerfully start my day anymore.  I set an alarm the night before but when it goes off immediately my head is killing me.  I get up and bring my ice pack back to bed with me, setting and resetting my alarm several times until I finally realize the pain is not going away so I might as well get out of bed.  I make myself some coffee, check my email and then usually get to work.  I work a couple hours until the girls wake up then stop.  Next is breakfast and then school work.  After school work, lunch and chores are done I am back to work late in the afternoon.  Next a break for cooking and eating dinner then back to work again.  Some nights I work until 11:30 or midnight.  People are amazed when I tell them what I do every day with my condition.  They say they don't see how I do it.  I really don't know how, I just keep going.  But that has been my life for quite a while now since I have had this.  I just keep going through life, not necessarily enjoying any of it, but what is the phrase I am looking for?  Ah, yes.  I just keep on keeping on.

New symptom

I have had this new weird symptom for about a week now.  I have had this weird tingly feeling on the back of my head in the area it hurts on the left side.  This causes me to think of nerve damage.  I have always heard that damage to a nerve can cause tingling/pain/numbness.  My husband says my occipital nerve is "worn out" from hurting so long!  It feels just like the tingle you get from using a TENS unit.  Now if that is what you get from the occipital nerve stimulator, I can definitely deal with that better than the pain.  Too bad it hasn't replaced the pain.  Now I have both.  On top of that I think I am getting my daughter's cold because my throat has hurt since last night.  Yuck!  Hopefully that will be better by the holidays.  My poor baby still has a little cough, but she doesn't feel bad anymore at least and no fever for several days now, hooray! 

Oh by the way I started writing!  Yes really.  Being an author has been a lifelong dream of mine but I have started many projects that never were finished.  I have a really bad habit of not finishing things!  I figured if I told people about my project I would be more likely to actually finish.

Did I already say I have the best husband in the world?

My husband found me an ice pack with a velcro strap, yay!!!  That might not be so exciting to most folks but for me I could almost cry tears of joy.  Now I can keep my ice pack on my head and have my hands free to type for work (or blogging of course!).  It even stays cold for 8 hours out of the freezer.  My youngest daughter was a little disappointed at first that it was already "invented" in her words because she wanted to grow up and invent an ice pack with a strap for me, but then she was very happy as that meant I can do more things with my ice pack on instead of just lying on the couch. 

I do miss having large holiday get-togethers with family and friends but I just can't handle the noise and stress.  My oldest daughter turned 17 last month and she only asked if I would make her a cake instead of having a big party.  We did not go anywhere Thanksgiving either.  I plan to at least go visit family for Christmas.  Hey maybe we can have some lovely family photos with me wearing my snazzy ice pack! :-)

Still no news from the headache expert folks.  Guess I will be having that anniversary after all.  On the bright side, my pain management doctor has started me on a different long acting medication that seems to take the edge off like the short acting stuff did but without such dramatic highs and lows of pain relief and it lasts around 5 hours or so instead of 1 or 2.  It also does not make me as mean and irritable as the old medication did.  I try not to think about it but I can't help but wonder if anything would actually bring the pain down even half its normal level.  I really don't believe that there is a medication out there that will.  Of course there are plenty of medications that can make me go to sleep so I don't feel it, but I just want to feel better and go on about my day instead of sleep through the day.  Even the strong long acting meds seem to have no effect on the "stabs" that I get on top of the constant headache.  Oh well as I am stab free right now guess I better try to be productive.

No news does not seem to be good news

I am playing the waiting game once again.  My head is killing me as I sit here.  I couldn't concentrate enough to work and I couldn't lie still with my ice pack anymore.  The Celebrex was not a miracle cure unfortunately.  I called and left a detailed message for the new doc.  I got a return call from his research assistant yesterday evening.  She was calling to let me know they "haven't forgotten me" but he is still in the process of talking with all of his colleagues and trying to come up with a plan for what to do next.  I am just not patient anymore.  I did not want to have my 3-year anniversary of the Evil Headache but it looks like I will.  That will be January, only a month away now.  Before I went to see this new doc I had been researching on the internet (as usual!) and discovered this group named Migraine Treatment Centers.  Anyone heard of them??  They seem to be a network of physicians specializing in pain management who actually implant occipital nerve stimulators, spread out in different states across the country.  They have a physician in Tennessee, which is not that far from me.  I had called to get a little more info and talked to someone who suggested I see the doc in Tennessee.  I was asked to get my medical records and fax them to them so they could schedule me.  I have not been able to get all of them yet and received a call from them today checking to see if I still wanted to see the doctor.  It just seemed like a kinda telemarketer type call.  I am just a little nervous about letting just anyone implant something so near my brain.  I had almost completely decided to let a neurosurgeon do it instead of a pain management physician, but.... if this doctor is more available and possibly more used to getting insurance approval....  I don't know.  I'm not sure what to do so I did nothing LOL.  That is me.  I am on the no-plan plan I guess like Polly in Along Came Polly the movie.  Guess I will think about it a little more.  Now maybe I should try to get some work done.

Edit 1/31/2012: I have definitely changed my opinion about neurosurgeon v pain management physician doing surgery.  I have had the opportunity to meet and/or talk to different pain management physicians now and I must say that they all seem brilliant and have much better bedside manner than any neurosurgeon I have met or talked to.

Feeling a little hopeful again

Yesterday my wonderfully hunky hubby drove me to an appointment with a new neurologist in Birmingham at UAB.  I really like this doc!  He wants me to try Celebrex, which I am a little bit scared to do I admit after my encounter with the Indocin, but he says it is much easier on the stomach than the type of anti-inflammatories like Indocin.  I am trying it while he talks with some of his headache specialist buddies at Mayo and Cleveland clinics.  If the Celebrex does not magically cure me it is probably on to the stimulator.  But this doc is completely different than the last one.  He says that I am a special case as I cannot tolerate the Indocin and he really doesn't see me NOT being able to get a stimulator!  But he only recommends 2 places getting the surgery done - Mayo Clinic or Cleveland Clinic.  Hmm.... that would be very interesting to see how me and my family handle traveling for that.  I'm not really sure how we would do that but whatever it takes I don't care.  I'm sure we could figure it out if it meant a chance at having fun mommy/wifey back again!  Of course a clinical trial is still an option we are considering, and I am on a waiting list for one for Mayo Clinic and my new doc is going to talk to the doc who added me to that list.  Maybe I will have more good news soon.  At least this is a much more upbeat post than my last one!

Maybe I'm the one...

I was thinking of the song Psycho by Puddle of Mudd and can't help but think of my latest conversation with the "insurance specialist" in the NC doctor's office.  I love the doctor and the fellows that I have spoken to and also every other person on staff that I have spoken to and/or met.... that is except for the insurance specialist!  For some reason it just feels like she has a strong dislike of me!  That is where the song comes in, feeling somewhat paranoid.  I have no idea why she would dislike me but she just is very short with me.  When I told her that I had talked to a few people that fought insurance companies and got the occipital nerve stimulator implanted, they got it through the appeal process, meaning I can't appeal anything until they submit a request, she said "Well I just don't believe that, these people must not have understood exactly what you are talking about" to which I calmly replied yes, we had extensive discussions and it is the same exact surgery, to which she replies she still doesn't believe it, like I am just making things up.  She then says "Well maybe you can just go to whatever doctor they went to" at which time I say that I would like my medical records so she promptly transfers my call to the medical records department.  The person there of course was very nice and helpful (go figure).   Oh well, starting over again is a little depressing but I have been waiting since July and she has done nothing.  She talked to a representative from my insurance carrier and faxed some medical studies about occipital nerve stimulation to her.  I spoke with the insurance rep who actually was much nicer than her who was confused as to why only research info was faxed to them.  They need the doctor to actually request coverage for my surgery before they can review and make a decision.  The insurance specialist at his office will not because she says it will be immediately denied.  I feel like this one employee is causing the doctor to lose money.  Maybe they will figure it out eventually.  At first I thought about calling and speaking with the office manager about it but then I just decided to forget it.  We chronic pain patients already are on thin ice with some folks thinking we are nuts already, like we are imagining our illnesses and they are "all in our heads".  I don't have the energy to talk to another person unless I have to.  I know that is sad but it is true.  I don't want to talk unless it is a person who is important to me I am talking to, as each word actually hurts my face and head to speak.  Anyway, enough whining from me today.  I am going to try to add a link to the YouTube video for that song.  Of course for you other headache sufferers you might want to turn the sound down like me! 

http://youtu.be/pDdeOncpD5E