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!).

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. 

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!!