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Friday, November 2, 2012

One month post op

I cannot believe it has been a month since my surgery!  I must say that it has been life changing in many ways.  My husband and I brought our youngest daughter on a field trip to a pumpkin patch last week and we had SO much fun!  I probably irritated them by constantly making the remark that my head did not hurt!  It was just so surreal to me.  I have not done anything fun like that without the constant stabbing pain every second and it is a completely different feeling.  We also went trick or treating with some dear friends of ours on Halloween and we had a blast!  I am so excited about going places and doing things I did not feel like doing for years.  I am still being careful though because I do not want to do anything to cause my leads to move.  I did have a little incident where my daughter went a little nutty and it was just me and her so I had to pick her up to make her get in the car.  I am hoping that everything is ok.  Now on certain settings with the stim I have started getting uncomfortable stimulation in my nose.  Yep, it feels really weird like when your hand falls asleep.  I hope that the lead in my cheek did not move around and change position.  My followup with my surgeon is in a couple of weeks so I will ask him then.  I think I am going to ask my St. Jude rep to make me a couple of more programs too.  I am back working part time also and love being back to work.  It is so different now sitting and working without saying "My head is killing me!"

Thursday, October 18, 2012

Feeling much better now

It has been about 2 1/2 weeks since my permanent peripheral nerve stimulator implant surgery and I am feeling completely different than my last post.  I have been doing a whole lot more.  I am still being very careful not to do things to cause my leads to move, but I have been up and about a lot.  I no longer have any swelling.  My darling husband has taken out all of my staples and sutures tonight, and my incisions look really good.  I will update photos soon but tonight I am too tired.  I was all worked up ready for it to be excruciating but it was not at all.  My husband was very gentle and did a wonderful job.  I would be completely LOST without him and I owe so much to him.  I feel so completely blessed to have the wonderful family and friends that I have.  I am looking forward to enjoying life much more with these terrific folks.  I have had many mornings that I have woke up with no headache whatsoever.  I have found the trick for me is to leave the stimulator on all night but at a very low setting.  The first time I woke up with no headache I felt like telling the whole world.  It is a completely new experience for me.  I used to wake up every morning to excruciating stabbing pain in my head and wish that I had not woke up at all.  I do NOT miss those days!  I am feeling very hopeful that I am beginning to get my life back.  I really feel that all of the fighting I did for my surgery was so worth it that I would do it again without any hesitation at all.  It was an emotional roller coaster for sure but what a happy ending so far!  I never would have imagined the day I read the first article about ONS surgery how my life would be so changed.  I hope my positive results and many other patients going through the same will help get FDA approval eventually for this wonderful tool for people suffering so badly with head and facial pain.  WARNING:  Topic regarding female issues:  My first major test for the stimulator is my first menstrual period since my surgery.  My periods are my worst headache trigger and usually have me in bed crying for at least two days due to the increased head and face pain.  Not this time!  I was completely surprised when it started because I did not have the blinding headache beforehand.  Now the next test will be thunderstorms.  I am crossing my fingers for that one!  It just happened to be storming the first time I saw my surgeon Dr. Rupert and I was at my worst on that day.  I am nervous and excited at the same time to see how I do through a thunderstorm with the stimulator.  I have eaten chocolate on several occasions since surgery by the way, and it has been just fine.  I love my stimulator!  I am seriously thinking about naming it because it is so dear to me (and my family!).

Sunday, October 7, 2012

Recovery is slow

I had my permanent peripheral nerve stimulator implant surgery October 1.  It was not powered up until October 3 because we had to wait until some of the swelling went down first.  I thought I would be feeling fantastic by now but unfortunately I am still VERY sore overall and having a hard time getting around.  I have learned to give up and just lie down because every time I am up and around for any amount of time my swelling increases, which causes more pain.  The headache aspect is so much better though that it is amazing.  I have only had one episode of what I call "the stabs", which the doctors call "exacerbations" since my stim was turned on.  Mostly I am just sore from the incisions and surgery itself.  I am very afraid of having my leads move as I have been hearing more and more stories of that lately so I am taking it VERY easy for as long as possible.  My husband has been extremely amazing throughout all of this.  I would not have made it without him.  My youngest daughter has been so very amazing and helpful also.  All family and friends have been great too, as well as the ONS support group on Facebook.  It is so great to have so many people to talk to when I am feeling bad, good, or whatever!  I got a new crazy haircut again, but thankfully my hair is long enough that when I leave it down it covers it up so you can't even tell.  That would not be a major issue anyway for me.  I told a doctor before that I didn't care if my whole head had to be shaved, and I still feel the same way.  My surgeon, my St. Jude Medical rep, and the whole staff that worked with me at Cool Springs Surgery Center were all wonderful.  I don't think it could have gone any smoother. 

Saturday, September 29, 2012

Permanent surgery soon!

Wow I cannot believe I have not been back to my blog in over a month.  It has just been very busy and I have not felt well.  When my trial stimulator was removed, the Evil Headache was back at full intensity all at once 1 1/2 hours later.  It was terrible.  It has been terrible ever since.  I have been at about a level 8 for most of the time since. 
We also bought a new house - yay!  Moving has been really hard with the pain though.  I had to take so many breaks and stop what I was doing so many times it was ridiculous.  I have never had problems doing normal things like this until the Evil Headache came along.  Really I need a better name for it because "headache" just does not do it justice.  "Ice pick stabbing through the face exiting the back of the head along with another stuck in the side of the head" seems like a really long name.  I get really irritated whenever someone whines to me "I have a headache".  I want to punch them really!  I am having some anger/irritability issues from dealing with the 24/7 pain, is it obvious?! I cannot even drive without being afraid that one of my "exacerbations" will happen while I am driving.  I drove my youngest daughter to a field trip recently and it happened.  I went up on the curb but thank God that is all that happened.  I have basically been letting my darling husband drive me everywhere since then.  I try to explain it, but no one really seems to understand how bad these pains are that occur with the "exacerbations" (or as I call them "the stabs").  My body just shuts down and I cannot control it.  My eyes automatically shut if I am in bright light and I clutch my head until it starts to subside. 

Anyway, after waiting not so patiently I finally got word that my insurance company agreed to pay for the permanent surgery so I will be heading back to Tennessee again very soon and when I am able I will be back to blog about how everything went.  I have a terrible fear now that after I have the peripheral nerve stimulator implant done the pain will switch over to the other side.  I wonder if that has ever happened to someone with hemicrania continua?  Maybe I should do some research.  Wish me luck!!

Sunday, August 19, 2012

Successful trial

Today I can joyfully say that I have had a very successful trial.  I was a little unsure at first because I had procedural pain and that pain was in the same areas as my pain normally is, making it sort of hard to decipher sometimes whether the stimulator was working or not because it was so sore there.  When I woke up on Saturday morning though, it was like the difference between night and day.  I had no headache and decided to try not taking my pain medication.  I was lucky enough to have a thunderstorm come that night also, which is one of my worst triggers.  I just changed the program on the stimulator and was good to go.  Still no pain meds.  I did get an answer to a question that I have been wondering for years now.  I wondered if I had the stim could I still get the bright red cheek that comes with the terrible headaches?  I did in fact get that bright red cheek but all the while I was chatting and laughing and felt much more like the old me.  I did make a stupid mistake though.  I got sleepy and went to bed forgetting to take my pain med (Kadian) that I have been on for almost a year now.  I woke up this morning sweating with chills and very nauseated.  It took me a few minutes to realize I had gone without taking any medication for 36 hours!  While I felt really bad for a couple hours this was still exciting that I FORGOT to take any medicine because my head was not hurting.  I am sort of emotional today.  My oldest daughter and I have not been getting along at all for a few weeks now and she even moved in with her biological father a few days before I went to Tennessee for the trial surgery, and now I am going back to Tennessee to have the stim removed but I don't want to chance infection so I will sadly give it up.  I am just not ready for trading in this wonderfully soothing massaging feeling in my head for the regular old pain pill taking, ice pack holding me.  Hopefully soon I will be headed to the permanent implant and my daughter will realize I am the best mom in the world (well one can only hope right)!

Wednesday, August 15, 2012

Trial implanted!

I had the leads to my trial stim implanted Monday the 13th and had the battery hooked up and the stim turned on Tuesday afternoon.  It has only been a little over 24 hours so it has not magically taken all my pain away.  I still have quite a bit of incision pain where the surgeon made incisions and then shoved wires through those and tunneled them under the skin - is that why I am hurting ya think?!  I am hoping in a couple of days I will be able to tell more of a difference.  The stimulation does feel nice.  It feels like a light massaging sensation to me.  I would trade that for excruciating pain any day!  I will post some pictures but if you are squeamish beware the bandages do have some blood on them.  I go back next week to have the trial removed and if it was at least 50% successful in relieving my pain we will plan to do the permanent implant surgery in 2-3 weeks.  At least I have a good excuse for lots of trips to Tennessee right?!  The people there are super friendly.  The entire staff at Cool Springs Surgery Center was awesome, not to mention my wonderful surgeon Dr. Rupert and rep from St. Jude, Rod - who was very patient with me and created several programs according to what I asked him for. I have one lead that I cannot use at the moment under my eye.  It hurts to stimulate it and the area is just really sensitive.  I am just going to use the other 3 leads for now and wait to see if that area feels better soon so that I can try that lead again. 

Saturday, August 11, 2012

It's almost time to go for trial surgery!

My surgery is getting so close and I am SO excited!!  They will not turn the stimulator on until the day after it is implanted because they said they will numb my head up so much that I will not be able to tell if it is working or not the first day.  Now I am excited about my head being numbed up, yay!  I will try to keep the blog updated but my laptop bit the dust so I will have to try to use the computer in the lobby where we are staying.  If that doesn't work, I will update it after we get home.  We are coming home on day two if I am doing ok so that the hubby can go back to work for a few days.  He is trying to save his days off to help out when I have the permanent surgery if the trial is successful, as I will be needing more help with that surgery since it is a more difficult surgery while the trial is just a simple outpatient procedure.  Wish me luck!

Tuesday, July 31, 2012


Yes, for once my annoying persistence has finally paid off!  I have been informed this morning that my trial surgery has been approved and if successful the insurance company has agreed to pay for the permanent surgery as well.  Woo hoo!  I could not be any more excited.  Now I have to get it scheduled.  I will try to keep everything updated here.  This only happened because 2 very nice people shared their personal information with me that was proof that the same insurance company as mine has paid for the same surgery for them.  After sending this they reviewed the info for about a week and they changed their mind.  It is sad that us patients who are suffering from so much pain have to go through so much to get relief.  Hopefully this is something that will finally help me get more of a normal life back.  I know it probably isn't a magic cure that will make me never have a headache again.  It is considered successful if you have 50% relief or more.  That to me sounds wonderful.  I believe I can handle daily life a lot better with a level 3-4 headache instead of 7-9.  We will just have to wait and see.  Wish me luck!

Wednesday, July 11, 2012

Little rays of hope

I just realized I have not posted anything since April!  That is because I have not really had anything to post about.  I have had worsened pain over the past few months to the point I have gotten emails from both my jobs because I have been so behind.  It just seems everyone in the world wants me to do something and all I have felt like doing is lying in bed with an ice pack.  I got another denial from insurance and they will not accept any other requests from my surgeon for that surgery.  They say they consider the review and reconsideration process "exhausted", to which my husband states he is exhausted from paying weekly for our insurance.  It is very, very frustrating.  I have been working on my own member appeal to send in and have asked family members to write some personal letters about how "the headache" has affected my life over the past 3 years.  But I also have had 2 things that have been somewhat encouraging to me. 

First, my local pain management doctor has his billing dept/insurance specialist talking with the rep from insurance about doing the trial surgery here locally in his office.  I had no idea they were even doing that!  I did not even know that my pain management doctor did surgeries.  I saw him for the first time on May 31.  Before then I had always seen a PA in the office except when he came in and met me and shook my hand before they put me out for him to do the cervical epidural.  He said he was not going to ask me to do any more injections as they only had such short term relief it really wasn't worth it.  He asked if anyone had ever mentioned a stimulator surgery to me before.  Umm.. yeah.  I have been battling for that surgery for a year now!  I told him how my insurance company had denied to pay for it a few times.  He says they are saying a lot of things are experimental lately and not wanting to pay for a lot of things now.  So I asked him if he could write a letter to the insurance company stating that I need the surgery and he said he would.  At no point did he say he would do the surgery!  I called the office about a month later to ask if he had ever dictated the letter and they transferred me to the billing department.  The lady there ended up being the wife of a supervisor where my husband works and he actually knows very well.  They have actually been to my home before.  My husband has done mechanic work on their vehicles.  She was extremely nice.  She said she had been in touch with the insurance rep and trying to get the surgery covered.  I was completely dumbfounded as I had no clue this had even been going on.  She said she would call me whenever she got it approved so I could schedule a surgery date.  That blew my mind!  Of course I haven't heard from her anymore and it has been a couple weeks now.  I am not losing hope though.

My second encouraging thing is a new chiropractor.  I started taking yoga classes and my teacher recommended I see her chiropractor.  She does not even see a regular doctor anymore, just goes to see him.  He is supposed to be an excellent diagnostician (is that a real word??) and diagnosed a condition she had with her heart.  He gave her some kind of supplement to take for that and she has been fine for 2 years now after being on it!  I thought it was definitely worth a shot.  I had my appointment yesterday afternoon.  This was not really like any other chiropractor's office I had been to in the past.  They always pushed me into coming for several times a week and crack my neck and send me on my way.  But he noticed lots of things no one else has, like one shoulder was higher than the other (I was told that as a child at scoliosis screening at school) and when he did the testing where you resist pushing I could not even stand up.  When he pushed I almost fell over every time.  When I was lying on the exam table he said one leg appeared shorter than the other also, one hip was pushed forward and the other backward.  After a long treatment with all kinds of things that sounded like power tools to me (at one point I was almost sure he was using a buffer on my back) he stood me up again and my legs matched, my shoulders were almost even and my headache had went down very minimally.  So he called his wife in to help him do a treatment he called "biocranial therapy".  This was painful but I think so worth it!  Usually when it rains I am useless and can do nothing but lie down with ice packs and wait it out the pain is so bad.  When I walked out of his office it was cloudy and began to rain on the drive home.  My headache was still low at around a 2!  I came home and went out with my husband to feed all the animals (we have a lot!) then came in and cooked dinner, cleaned up and started working but fell asleep while working.  All this time it was storming with lightning, thunder, etc.  I had a minimal headache, not a piercing, throbbing, make you wish you were dead headache as I usually do.  I slept like a baby.  This is without taking any melatonin, benadryl, etc.  I normally am up late at night because my head hurts so bad I cannot go to sleep.  I am cautiously excited.  It is a really sad thing, but now my husband and I are very cautious to be too optimistic about any treatments because it seems sometimes things help at first then the evil headache wins every time.  It has been trying to reappear in its usual form and I have gotten occasional more painful  jolts but it is still lessened this morning.  I know it may not be a magical cure but if this treatment brings the level of my headaches down like this all the time I can definitely be a lot more productive.  Speaking of productive, I guess I better get back to work!

Friday, April 6, 2012

Having a bad day

Yuck!  Since I got up this morning I have felt bad.  I had a cold earlier in the week but I thought I had gotten over it.  Now I have a sore throat and a swollen lymph node that makes swallowing and turning my head hurt.  My muscles are aching all over also so much that it hurts if I walk.  On top of that I am extremely sleepy.  I fell asleep on the toilet lol! I have been trying to work off and on all day but keep falling asleep at my desk.  All this on top of my head feeling as if a knife is stuck in it makes for a bad day.  Ok I think I am done whining for now!  Hopefully I will be feeling much better by Easter.

Tuesday, April 3, 2012


Well I finally got all the records in from all doctors who have treated me for headaches since 2009.  The appeal was faxed in and a hard copy mailed in as well today.  Wish me luck!

Tuesday, March 6, 2012

Insurance denial

Well I got the dreaded denial letter in the mail.  :-(.   The insurance company is claiming the procedure is investigational.  Interestingly, they only denied one of the procedure codes and not both.  I called and talked to the insurance specialist handling my case.  She is going to check with the coders and see if something can be changed and re-submit the request or else we will have to do an appeal.  More waiting in pain of course.  I had another cervical epidural yesterday.  Head is still killing me.  When I sat up in the recovery room my head actually hurt worse for a minute.  It decreased back down to its normal constant pain within a few minutes after they gave me some caffeine though. 

Thursday, February 16, 2012

Nerve blocks

I went to the pain management office yesterday for an occipital nerve block.  They had me down for bilateral occipitals but since my right side does not hurt I did not want it injected.  I asked if he could do a maxillary injection instead and he did.  When I told him my whole left side of my head hurts he said he couldn't block all of the areas in one visit but we had to find a combination that worked well like what we did this time.  I have done tons of research about the branches of the trigeminal nerve and from what I had read the maxillary branch (V2) should cover up into the temple area.  But I have numbness from under my eye to my upper lip and it does not extend all the way to the edge of my face.  Sadly this is not even the area that hurts the most.  When I pointed to the temple area and asked if the block would spread up to that area, he said no but that only hurts because I clench my teeth and I need to get treated for TMJ.  Oh if he only knew the treatments I have gone through for TMJ that were fruitless not to mention drained my savings account because insurance would not cover them.  But of course it hurts to talk and so I try to keep it short.  I told him I have already tried that. 

Also for some reason the occipital did not work like the others I have had.  I still have pain that is shooting up the back side of my head as usual like I never even got the shot.  I wonder if it is possible to miss the right spot and it not work, or is it possible to get sort of immune to them?  Anyway, the shots seem to have ticked off the evil headache.  It was really hard to drag myself out of bed today.  It is REALLY killing me.  Days like this I want to just stay curled up in bed all day, but I can't.  Curse you hemicrania continua!!!

Tuesday, February 14, 2012

Happy Valentine's Day

My husband is so sweet to me!  He surprised me by bringing me my Valentine's Day gifts while I was in bed with my ice pack this morning before he went to work.  I love Valentine's Day!  It is a great reminder to appreciate the people you love and show them how much they mean to you.  You don't have to spend a ton of money to do that.  I do hate how the holiday has become so commercialized now with everything advertised as a great Valentine's Day gift.  As for me, being pampered is a great distraction from the constant pain and frequent ice pick jabs of hemicrania continua.  It sure would be wonderful if next Valentine's Day I could wake up without a headache at all and maybe pamper my husband a little for a change.  I can always hope.  For now I am going to go smell my beautiful yellow roses again! (Yellow is my favorite color)

Friday, February 10, 2012

Results of the trip to TN

Well the trip to Tennessee went very well.  I attended the seminar hosted by the doc and there were a whole 3 patients there including me and we were all from out of state.  In his presentation this doctor actually mentioned hemicrania continua!  I was so excited because most doctors I have told my diagnosis to have never even heard of it.  And he has actually treated a woman with HC!!!  At my appointment I asked him how he would treat the facial pain.  He had me show him exactly where my pain was and he showed me where he would put leads and drew me a little diagram.  He is dictating a letter of medical necessity and we will have to wait and see what the insurance company says.  The staff said it usually takes 2-6 weeks to get the response.  It sure would be great if I just got approval right away but I don't actually expect that.  I really like this doc and hope that he can do the occipital nerve stimulator implant surgery.  He says I would have to stay overnight and they program it the next morning, then I can go home and do everything that usually triggers a headache to see if the stimulator is working, then they take it out the next week.  They make you wait 2-3 weeks before doing the permanent implant.  It was pretty ironic that the day of my appointment my head was killing me.  When my blood pressure was checked it was actually within normal limits.  That is high for me.  My BP is usually around 80-90/60-70.  I figured it was because I was in so much pain and nervous.  I was determined to go check Nashville out anyway so we did.  I always try to enjoy life with my family even when my head hurts so badly because I don't know when we might ever go back.

Tuesday, January 31, 2012

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:

Friday, January 27, 2012

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.

Thursday, January 26, 2012

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.

Wednesday, January 25, 2012

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.

Monday, January 23, 2012

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).

Tuesday, January 17, 2012

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! 

Friday, January 6, 2012

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.

Tuesday, January 3, 2012

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.