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

Insurance sucks

Well I went for my appointment with pain management yesterday.  The PA I saw was great.  She was very nice and actually appreciated that I brought a printout describing my condition and a sheet with all the treatments I have already tried.  She wants to do a nerve conduction study for the nerves in my neck and also an MRI of my neck.  The insurance company requires preauthorization for MRI and they did not give it when the request was made.  They called the facility wanting to know how long I have been taking my pain medication.  What in the world does that have to do with whether or not I need an MRI done?  Now I have another thing to wait on, which is whether or not they will give authorization to do the MRI.  I wish I did not have to mess with this insurance company but it does beat paying cash for everything I guess, which there is no way I would be able to pay for all of these tests and doctor visits.  I just wish they would pay for things my physicians believe that I need without all of the crap we have to go through to do it.

Still waiting

Nothing much to update today but I felt like posting so here I am!  I am still awaiting insurance approval.  The insurance specialist from the dr in NC spoke with the representative for my group of insurance and she wants them to fax reports of studies that show how well the stimulator works and they will think about changing the policy supposedly.  I am trying to be optimistic but I just don't see that happening because 1 patient needs it.  I wanted them to just go ahead and submit a request for authorization but the insurance person basically refused stating it would immediately be turned down.  So what?  If there is nothing requested I cannot appeal a decision!!!  That is how I have heard most people that fought insurance got their surgery approved.  I am on a waiting list for a clinical trial but that isn't supposed to begin until next year.  I just feel as if I am at a standstill yet the pain has been progressively getting worse.  I scheduled an appointment with a pain management group and it was for this morning but they called stating that they would have to reschedule because the PA I was supposed to see is out sick today.  So now I have another week to wait on that.  Ugh!  I just can't seem to get any help at all.  Every day I go on about life and pretend to be normal when I have to go out into public but in reality feel like cowering in a dark quiet place 24/7, or else screaming!  I am hoping pain management will at least help me keep my sanity while I wait on possible surgery.  Nearly every night I curl up with my ice pack and tell my husband that I can't do this anymore, but in the morning I get up and start over again anyway.  I am determined to get better but honestly getting more and more tired from dealing with the 24/7 pain.  Hopefully relief isn't too far away.  I left my full time job as I couldn't handle working for those jerks anymore.  I already had some work that I did on my own anyway, just part time though.  It was nice at first until bills started rolling in!  I am starting a new  job though where I can choose my own hours, and I definitely feel like this has been the best choice I have made in a very long time.

My baby is 7 today

My little girl turns 7 years old today!  We are having her party tomorrow.  Normally this is such a wonderful happy time for me.  I love making my kids special character cakes and decorating for their party.  Unfortunately I am kind of dreading it because the thought of being around people talking and expecting me to talk, and kids being noisy has me wondering if I can make it through without going insane from pain.  On top of that last night I had terrible abdominal pain after taking my pain medication.  This is not the first time it has happened.  I have done research on this and I feel like it is a sphincter of Oddi spasm but of course I am not a doctor so cannot diagnose myself.  I am just afraid this chronic pain medication use might be doing something to my liver and pancreas.  Ugh, it has definitely turned into a love/hate relationship between me and the pain medication.  I just want to be off medication period.

Tough day

Ok, so I am feeling really sorry for myself today and needed to vent.  It has been a really, really bad pain day.  On top of that the insurance specialist from the doctor's office called and said that my insurance company would not do a precertification or predetermination for the surgery so we have no clue whether they would consider paying or not.  My husband called the customer service number and I eventually just got the phone myself to talk to the (rude) customer service rep.  I explained to her the situation and what the surgery was.  She said if it says in the medical policy that it is considered investigational (which it does on the website) then there is just no coverage.  Period.  So there is no hope???  Who knows.  The insurance specialist is gone for the day, doesn't work on Fridays, and Monday is a holiday.  So it will be at least Tuesday before I can possibly get in touch with her again.  I have to get the procedure codes she used when she contacted the insurance company before I call back and talk to the rep for the group policy. 

All of this has just made me really upset today.  I am sort of unsure why.  I knew it could possibly be a long, hard process to get the insurance company to pay for the surgery.  I guess it is just because everyone I talked to on the phone today just seemed to be so completely nonchalant about it.  Oh well, sucks for you doesn't it?  That is basically the vibe I got.  I guess if they had to live their day to day life feeling like a knife is stuck in their head they might be a little more sympathetic.  Most people hear the word headache and think of taking medication, lying down for a little while and then feeling all better.  Nope, not for me.  I actually daydream of going back to the point in my life when I had migraines.  I would give just about anything to be able to only have a headache even once a week.  This constant day and night pain more of the time severe than not is probably going to drive me insane.  It has been over 2 and 1/2 years now.  I honestly believe that if I did not have a family I would not be alive today.  Without people who loved and depended on me I just wouldn't deal with this pain anymore.  I try so hard every day to enjoy my life, I mean really, really hard.  I put on a smile and pretend to be perfectly fine every day.  Everyone says "I don't know how you do it."  I honestly don't either.  I guess the hope of one day being able to have the surgery that seems to be my last hope has been one thing keeping me going.  I can no longer enjoy reading a book to my daughter, dancing, singing, playing, exercising, long conversations, laughing a lot, going to the movies or a concert.  I'm sure there are many more things but in this pain filled haze my brain isn't working right today.

Frustration

I am frustrated to tears today!!!  When I saw the doctor in NC he suggested that my doctor prescribe me a new medication that he thought worked better on head pain and had less side effects.  I called my headache specialist's office the Friday of 2 weeks ago and the receptionist said she would pull my chart and ask him. I never got a response so the next Monday I emailed him.  Still with no response by Wednesday I called again.  The receptionist stated that he had been very busy and maybe would get around to reading my email that day or possibly the next.  Still no answer today (1 week later) so I call again.  The doctor is not in the office (of course).  The receptionist pulled my chart and he had written a note on my chart saying that he doesn't know anything about that medicine so he wasn't going to prescribe it, the doctor in NC could prescribe it.  Problem - that doctor did not want to prescribe medications for me since he is 3 states away and thought that my doctor who has been treating me all along should do that!  So I said if he isn't going to do that I need a refill of my normal pain medication.  I am allowed the HUGE dose of 2 tablets a day for 24/7 pain.  The receptionist stated that the last prescription he had written for me in February was for #20, take 2 a day.  I was holding the bottle while talking to her, which states #60.  I explained that #20 would only last 10 days since I am supposed to take 2 a day.  Am I supposed to go to the pharmacy every 10 days???  I called the doctor's office in NC to check on insurance approval and of course had to leave a voice mail.  Maybe I will hear back from them sooner than the other doctor!  I just don't know what to do anymore.  I am in so much constant pain and can hardly do anything anymore.  I just really need some relief.

More info about the beginning

As far as my comment goes about getting to that later in my first post regarding not being able to eat healthy - My eating habits are drastically changed since February 2010.  I had been taking indomethacin since the end of November 2009.  This medication was the only thing that gave me days at a time of being pain free.  Unfortunately it wreaked havoc in my GI system.  It caused ulcerations throughout the GI tract so bad initially I was diagnosed as having Crohn's disease triggered by the indomethacin, then eventually it was decided the medication itself was what caused all of the ulcerations.  I could not eat without agony.  I spent a couple months basically living off soup or baby food.  I was hospitalized twice and almost had a hemicolectomy.  Boy am I glad I avoided that!  Also added to the first hospitalization my mother was on her way to pick up my oldest daughter and they were coming to visit me in the hospital when she was hit by a drunk/high driver and killed instantly.  He still has not gone to trial by the way.  Medically and mentally I am not the same.  I can never take any type of anti-inflammatory medication again or aspirin.  I love to eat lots of vegetables but unfortunately that causes me problems now ever since the damage caused by indomethacin. That is why I am tired of medications and want to go ahead with the stimulator.  I am hoping to get off medications.  Aside from the head pain I have always been essentially healthy.  I have had migraines since age 12 but they would only last a day and I had one maybe once or twice a month until I woke up one day with a headache that would not go away no matter what I did.  I don't want medications to mess me up anymore.  I cannot live without pain medication at this time, however.  If I did not take medications I would be completely nonfunctional.  The medications dull the pain enough so that I can still do some of what I need or want to do, but sadly not anywhere near what I want to be doing.   I have to limit any time going out into public, driving, being in noisy environment (as much as possible having kids at home!), etc. because afterwards I eventually end up lying on the couch with my ice pack and crying until I go to sleep.   This includes birthday parties, holidays, etc.  I really would like to get back to a normal life.  Hopefully I will not have to fight too hard with the insurance company to get the trial stimulator.

What the...

Ok, so now something totally different is happening.  Now the right side of my head has been hurting this afternoon.  Strangely enough the right side of my head hurt and my left cheek was red and hot.  What is going on with my crazy body??  Tonight however I am back to the same ol' headache on the left and red hot cheek.  I wonder if I need to ask to have leads placed on both sides if I actually get to have the stimulator placed?  Now I am wondering a little bit about my diagnosis.  I have read a couple of articles about a person having hemicrania continua with side shift, but it seems to be very rare.  Up until now I have never had a doubt.  All the symptoms matched.  Who knows?

New Doctor

Well I got to meet the doctor in NC.  He is awesome!  He even talked about how there is about a 100% chance of needing revision because of lead migration and he tries to secure the leads very, very well.  He is really nice and wants to do the surgery but says my biggest problem will be getting the insurance company to pay.  He is submitting for preauthorization for a trial implant so we are going from there.  I am pretty sure I will have to appeal.  I am trying to stay hopeful though!  Everyone there was very friendly and nice.  I really like the doctor and staff.  I actually talked to a fellow there and she answered questions I thought about after the doctor had left the room.  She was very helpful and knowledgeable also.  I will have to have some hair shaved off but I don't really care.  Heck I would shave my whole head if it meant relief from this pain!

Addicted to ice packs

Is it a bad thing to be addicted to???  It seems I can only go a couple hours without using one for the past few weeks.  I guess I jinxed myself saying I didn't have bad days all of the time.  I need an ice pack that stays attached to my head all day long!  Can't wait to meet with the new doc and see if he can help.

Going to NC

I finally have my appointment to see the dr in North Carolina that does the occipital nerve stimulator implant.  I am so excited!!!  Only now I have to wait a month....

Ironically I am having a bad pain day today :-(

Bad days

Yesterday was a bad day for the HC.  I spent the day on the couch feeling like I would pass out every time I stood up.  Fortunately I do not have that many days like yesterday, but unfortunately I cannot control when they come whether it is inconvenient for other people or not.  If I did have days like those all of the time I don't think I would be so tolerant of unsympathetic people.  They suck!!!

Things I have tried

Well I have been making a list to bring to my doctor's office with me tomorrow of all the things I have tried for the head pain since 2009.  I was surprised when I got to the end because I had forgotten how many things I had tried.  I am quite sure I left things out though since my memory isn't all it used to be.  Anyway, just thought I would share my list. 

On an exciting note at this appointment I am bringing this list and a referral sheet for a doctor I found in North Carolina that does the occipital nerve stimulator implant!!!!  Hopefully my dr can get me referred and I can get in to see him soon.

The list:

Antibiotics given by Urgent Care doctor when headache first started for "sinus" problems, although no sinus symptoms present

Ice

Heat

Triptans

Excedrin

Advil/Motrin

Aleve

Tylenol

Aspirin

Migranal

Topamax

Steroid Dosepak

Botox injections

Imitrex injection

Chiropractic care

Indomethacin - the only relief but caused GI ulcers, at first diagnosed with Crohn's disease by Gastroenterologist thought to have been triggered by the medication

TMJ dysfunction treatments:  bite split and bite splint adjustments, muscle relaxers, Valium

Radiofrequency thermoneurolysis for temporal tendinitis

Elavil (amitriptyline)

Panlor DC

Lortab and Lorcet

Esgic Plus

Ergonovine - caused severe chest pain, constriction/coronary artery spasm per Cardiologist

Zonegran

Trileptal

Nubain

Occipital nerve blocks

Gone to Eye Doctor yearly to make sure eye strain not a factor

HeadOn OTC topical treatment

GelStat migraine OTC sublingual

MigreLief (magnesium, riboflavin, feverfew)

MigraDefense (riboflavin, magnesium, feverfew, guarana, butterbur, white willow, griffonia, actisorb [black pepper extract, ginger root extract, rosemary leaf extract, turmeric extract and cayenne extract]

January 25, 2012 edit:
Now I have also tried these medications:
Carbamazepine (Tegretol) - did nothing
Nucynta - did nothing at several different strengths
Celebrex - did nothing
Methadone (severe nausea and vomiting and inability to stay awake) but did nothing for the pain
Diamox (side effects of tingling hands and feet, nausea and vomiting, severe drowsiness) two week trial ending today- no effect whatsoever on my pain
Kadian (my present pain management) at least takes the edge off pain so I can get out of bed

I also had a cervical epidural which actually helped symptoms in right hand and arm that I thought were carpal tunnel, but no effect on head pain at all except for reduced pain that lasted 3-4 hours

Chicken coops are dangerous

Well I finally got an answer to a question I have had for years.  I always wondered if I hit my head really hard on something if it would magically cure my head pain.  NO!!!!!  It does not.  I hit my head (on the pain side of course) really, really hard on a beam while tending to chickens in the chicken coop this morning.  Trust me I did not see stars.  I saw nothing at all for a few seconds!  Now the pain is worse so there goes that dream.  Oh well, at least now I know!

Getting started

I should first warn anyone reading this that this is my first attempt at a blog.  I do tend to ramble on at times and I am trying to work on that.  I am just basically aiming to describe what daily life is like dealing with chronic head pain (I try not to call it a headache anymore as it is just really worse than a regular ol' headache to me.  My sister has nicknamed it "Damian").  I have the diagnosis of hemicrania continua. To me this feels like a migraine daily with 30-50 times a day of so-called "ice pick pains" or "exacerbations" which basically to me feels like something being driven into my head (like an ice pick, screwdriver, whatever object you want to imagine here) through the temple to the cheekbone area for me.  Add to that a flaming red/hot cheek and sometimes a droopy looking left eyelid (yep only the left side so that is a great look). It does get difficult most days trying to maintain my full-time work status (at least I work at home), mommy/teacher (we are homeschooling again next year), household duties and I have to admit I am severely lacking in most of those areas at any given time lately (thankfully it is summer so school is kind of on the backburner right now).  Lucky for me I do have the greatest husband/hunk on the planet who does a lot of what I do not feel like doing when he is not working his full time away from home job plus doing mechanic work at home.  I also have the best sister on the planet and best best friend on the planet who are very understanding and listen to me complain/whine a lot.  I also lately have had the chance to talk (through e-mail/forums) to some really nice folks who are very helpful and understanding also.  My family is the biggest reason I want to get out of bed every morning.  My biggest wish is that we could take a family vacation to the beach and the kids would not have to listen to me complain and I could enjoy the bright sunshine without holding my head and wanting to run to the shade.  Of course running would be on the top of the list of things I do not normally do anymore.  Actually physical activity worsens the headache quite a bit so that is definitely a no-no.  Add to that the inability to eat healthily (I will get to that later) and that is a recipe for weight gain/disaster especially in a 30-something year old I suppose.  Am I rambling yet??