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!!

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!!!

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)

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.

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.

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.

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?

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!!!

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??