Advocacy for Patients with Chronic Illness: Raise Your Hand for Rare Disease Day

Check out this link from a blog I follow (Advocacy for Patients with Chronic Illness). If you go to this site to "raise your hand" $1 will be donated.

Advocacy for Patients with Chronic Illness: Raise Your Hand for Rare Disease Day

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.