One week until the trip

Everything is set up for my visit with the doc in TN.  I have exactly one week.  Our room is booked and everything!  I am trying to stay really positive and hopeful that this time will be different.  I am going to a seminar on occipital nerve stimulator implant surgery hosted by the doc on Tuesday then my appointment is Wednesday morning.  I think we might even venture out and check out the city of Nashville a little while we are so close.

Yesterday was what I call a "couch day" because I basically spent the entire day on the couch with my ice packs.  It was the worst the evil headache has been in several months.  I could not even figure out any type of trigger that made it that way.  I am just so thankful for my wonderful family.  My husband and kids tried to keep me as comfortable as possible and I don't know what I would do without them on days like yesterday.  My sister also bought me this neat headache wrap for my birthday.  It is wonderful.  I wore it all morning while I worked today.  It stays in place really well.  Here is a link if you want to check it out:
http://www.amazon.com/AbsolutelyNew-AN905-Headache-Reliever/dp/B001R5CFB4/ref=sr_1_1?ie=UTF8&qid=1328046080&sr=8-1

Going to Tennessee!!!

After I decided to get the ball rolling with the new physician group, it really got rolling.  This doctor requires his patients to attend a seminar about the occipital nerve stimulator implant surgery before the consultation.  So I had a choice of which one to attend.  Of course I chose the soonest one, so I am going to Tennessee in a couple of weeks.  I had to send all my medical records and while going through them I realized in my medical records I have records from 3 doctors stating I need the surgery and the psychiatric evaluation stating I would be a good candidate for it.  Surely that has to be some pretty compelling evidence there.  I am so excited and nervous.  I am trying to be cautiously hopeful as the last time I did this I got my hopes up so high only to have them smashed.  Hopefully this will be much better this time around.  My official 3-year anniversary of the evil headache has come and gone, and I am so ready to get rid of it.

Happy birthday to me

Well today was my birthday.  I won't be telling you my age although I will say that I can't say I am 29 anymore now that my oldest child is 17 (besides both kids now are saying Mom, how many years have you been 29 now).  Oh well.  I have such a wonderful family and friends that have tried really hard to make my birthday special.  I really do feel loved and I am trying to remember to be thankful for the great things I do have in my life like my family and friends instead of focusing on the pain.  I am afraid the struggle with chronic pain has led to a depression problem honestly.  The pain has just touched every aspect of my life and I am sick of it.  I want my life back.  I used to have fun.  I used to be a fun mom, fun wife, fun friend, fun everything.  Now everyone has to be quiet, lights can't be too bright, etc.  I decided to quit waiting on doctors to return my calls anymore.  I decided to call the Migraine Treatment Center back and I did.  I asked a ton of questions and actually the person I talked to was very nice and tried to answer all of my questions.  When she did not know the answer she was honest and said she would have to find out and would let me know.  Anyway, my point is I decided to take a more active role in my healthcare now instead of sitting back and waiting.  I have always been waiting for someone to call me back and I am just tired of it.  I want to get better and get back to having an enjoyable life.  So I am crossing my fingers and hoping that diving in will be the right choice.  I had to fax a copy of my insurance card and they are checking it out.  They did get an approval with my insurance company for another patient there for occipital nerve stimulator implant so I am very impressed now.  I think I gave myself the best present I ever have today, a chance at being healthy and happy again.

You Tube video of patient with ONS

I found this video of a patient with an ONS that needed revision and had to fight insurance to get her revision surgery and finally got the denial reversed through her doctor who sent a 45 page letter that reversed the denial.  I could not remember how to embed the video so I guess you will just have to click on the link and go watch it on youtube.

http://youtu.be/WpqQ71VxjWI

Insurance description of HC

Hemicrania continua, also a vascular headache, cause moderate pain with occasional severe pain on only one side of the head. At least one of the following symptoms must also occur; conjunctival injection and/or lacrimation, nasal congestion and/or rhinorrhea, or ptosis and/or miosis. Headache occurs daily and is continuous with no pain free periods. Hemicrania continua occur mainly in woman, and its true prevalence is not known. Indomethacin usually provides rapid relief of symptoms. Other NSAIDs, including ibuprofen, celecoxib, and naproxen, can provide some relief from symptoms. Amitriptyline and other tricyclic antidepressants are effective in some patients.

Ha! OCCASIONAL severe pain?!?!?

They reviewed the policy for ONS again last month and still say they will not cover it.

Seems like it would actually be cheaper for me as my pain med is $650 a month and all that does is help me get out of bed and be semi-productive during the day.  By the way, none of those meds have ever helped me (except for the indomethacin of course which caused severe GI damage).

More medication hatred

Ok I am officially done playing the little game with doctors of "just try this one and see if it helps".  In response to my email the neuro wanted me to try Diamox.  Now I always wondered if I might have pseudotumor cerebri, which is what the Diamox treats.  But when I asked several doctors they said by now I would probably have been about blind from the pressure over that much time, but nobody has ever done a lumbar puncture, not that I want one though.  Oh well I said I would try anything.  The first day I took it I vomited all day long.  This was also at the time my grandfather passed away.  I was at the funeral home with the family making funeral arrangements and had to keep going back and forth to the restroom and vomiting.  That was just great.  Then I called my GI doctor to ask for nausea meds.  So at least the nausea meds helped with the nausea and vomiting.  Now I get more lovely side effects - tingling like when your hand or foot falls asleep (like with Topamax), drowsiness all day long (nodding off constantly at my desk), fluid loss from urinating constantly so that I need to take potassium, and carbonated drinks taste terrible.  Well the last one I know isn't so bad and might actually help as far as the weight loss attempts, but I am just listing them all. He wants me to try this delightful medication for two weeks.  If it does not magically cure the hemicrania continua he says he will refer me to either Mayo Clinic or Cleveland Clinic for occipital nerve stimulator implant surgery.  I am leaning more towards Cleveland Clinic.  It is at least a little closer to me (still a 12-hour drive though).  I have to drive, no way we can afford to fly out with our whole family, hotel, rental car, etc.  So hopefully soon I will have that referral.  Please everyone cross your fingers for me! 

Cervical epidural

The steroids kicked in this morning.  I was feeling much better early this morning.  Believe it or not, after that and after taking my medication (newly upped dosage starting yesterday), I had a few minutes with no pain!  It was awesome!!!  After about 3 hours I decided to go outside.  It is very sunny today.  My youngest daughter and I were walking the dog and the stabs just came on very intense.  It has been back ever since.  I am feeling sorry for myself now.  :-(   I wrote a desperate email to my neuro asking for help.  I am so sick of this whole illness.  It has been such a rollercoaster.  When the pain is better even for a little while then comes crashing back, it is so devastating not only to me but also to my family.  It is such a happy time when I feel like doing things, then all of a sudden I am going to bed with my ice pack because of the pain.  I really don't feel that I have ever done anything so bad in my life to deserve such an illness as this hemicrania continua.  Ok I will quit venting for now before I am totally wallowing in self pity here.  Hopefully I will hear something back from the doc soon.

Nervous about tomorrow

Tomorrow I go for the cervical epidural at my pain management office.  I am nervous.  I have never had one.  I have to have a driver so I am assuming this means there is some sort of light sedation involved or something.  I forgot to ask so I guess it will be a surprise tomorrow.  It has now been almost a week since I called my newest neuro's office to ask if he had come to any conclusions yet as to what options I have.  I have yet to receive a call back.  This is so annoying.  I am getting really tired of dealing with doctors and their staffs.  I thought this was going to be a much better place for me but now I am wondering again.  I have been having more and more days with the hot red cheek and more of the red irritated eye also lately.  I was hoping to talk to the neuro about how I have been progressively worse.  #*&^ I am really grumpy today! 

On a better note, I finally received a copy of my psychiatric evaluation I had to do for the occipital nerve stimulator implant surgery.  The psychologist had it all sealed in an envelope with her business label on the front.  She said she did it that way so whoever requested it would know it wasn't just something I wrote myself.  No, I am not making this up.  Of course I was way too tempted not to open the envelope and read what she said about me.  It was just a plain white sheet of paper with an office visit transcription from the day I saw her for the evaluation.  It said some things that made me laugh out loud and some things that made me wonder if she mixed me up with someone else, but at least at the end she said that I was a good candidate for the surgery and she saw no indications of any problems that would cause any postoperative complications, etc., etc.  This was the last of my medical records that I requested copies of, so now I have everything of course except for records from the new neuro doc.

I think I will go soak in a warm tub and try to relax for a little while at least.  Wish me luck tomorrow!  I promise I will try not to be a big baby.