Wrong diagnoses

Well it has been a little over a year since my last post.  It turns out I have a lot more going on than what was thought at first.  Apparently I have lupus which has been the cause of all my problems like the unexplained joint pain and fever and overall feeling as if I have the flu every couple of months or so.  Apparently the lupus has affected the peripheral nerves in my head and face.  I fear that it has been so many years before a proper diagnosis that it is too late and irreparable damage is done.  I experimented more with the kratom and found the right dose.  It was a huge help.  Unfortunately it has now been banned in Alabama so that option is taken away.  I hate taking pain medications.  I swore I would never get back on the long acting morphine again.  It made me have terrible mood swings and rages.  It was a roller coaster of lows and highs with the medicine kicking in and wearing off.  I have no idea what I will do next.

Still searching for that magical cure

There is not much to update really.  It has been almost a year since my last post.  My neurologist told me at my last visit I had the atypical form of trigeminal neuralgia.  Of course I immediately did lots of research.  I am wondering if I actually have all 3 conditions or are some of the doctors wrong??  I am thinking of trying a new doctor but really just don't feel like seeing any! I have still been on Neurontin and I can tell it does help especially with the facial pain.  I can tell when it wears off in between doses.  I am trying something new called kratom, which is herbal.  It hasn't seemed to do anything so far.  I will continue to experiment.  I am also considering trying an essential oil blend recommended to me by someone who has chronic migraines also.  I can still tell the stim does still help just not as well as when it was new.  I just need to fill my toolbox with different things.  Finding the perfect combination is the hardest part though. 

Oh blog, how I neglect thee!   I cannot believe it has been so long since I added anything to my blog.  I have just been very, very frustrated with my headache condition.  I weaned off all narcotics last year because they were affecting my moods severely.  I was becoming so irritable I could not even stand myself!  Without the fog of constant painkillers my headaches came back to the forefront unfortunately.  I have been still on my quest for something to cure me but still have not found the magic solution.  I have tried many herbal and natural things.  I tried leaving many things out of my diet (again).  I kept going back for new programming of the stimulator but have still been having quite a bit of pain so my surgeon asked me to go back to a neurologist to see if he/she would have any more ideas.  I went to a neurologist in my small town because honestly I am just so tired of driving to see doctors.  He, in my opinion, is a jerk.  He tried me on a medication (Vimpat) with a sample kit.  I did have reduced pain for a few days so he wanted me to continue it.  I was happy to try it until I went to pick up my prescription at the pharmacy.  After insurance and after the discount card I received at his office my prescription was over $300 (for 1 month supply).  I just could not afford that amount.  I went back to him and told him I could not afford it so he decided to try me on Depakote.  He kept upping the dose of Depakote until I was finally at the maximum dosage and it was doing nothing (other than making me gain weight unfortunately) so I decided to stop the Depakote.  When I went for my followup and we decided to stop the Depakote he told me he was out of ideas and basically blew me off.  Now I lost my Imitrex connection as he would not continue prescribing it if I was not constantly coming to his office for followups, even though he himself said he did not know what else to do!  I now went to a new neurologist who I am not sure if I like either.  (I am beginning to believe I do not like most neurologists - they seem to be an extremely haughty bunch)  He tells me I am so wonderfully lucky that yes, I do in fact have 2 headache conditions - the hemicrania continua AND migraines.  The migraines seem to be affecting me worse than the HC at the moment.  He did thankfully give me a new prescription for Imitrex and started me on Neurontin.  The first day I took Neurontin it just so happened that I had a terrible migraine and was so sleepy from the medication that I basically stayed in bed all day.  However, the next 2 days were wonderful!  I had really low pain on both days.  I don't know if it was the new medication or just that the weather had completely cleared up (we had severe storms the few days prior) or maybe a combination.  I am trying to keep a positive outlook and hoping the Neurontin will help with the migraines AND HC.  I asked about trying Botox again since the migraine aspect is what is so terrible lately so he is trying to get approval.  He also wants me to get a CT scan since I have not had one in so many years.  I contacted my surgeon's office (the one who did my implant) to see if he needed to do Botox because of the implant.  He believes that a V2 nerve block (that is a branch of the trigeminal nerve) will help me more than Botox most likely so wants me to do that.  I have it scheduled for next week so we will see.  He says that the injections of Botox are so superficial the neuro can do those if I really want it.  I am up for anything so I am going to do it all!  Hopefully I will have some wonderful fairy tale like news next time I post.  A girl can dream, right?

As good as it gets

Yesterday I brought my kids to a birthday party at the skating rink.  I predicted to my husband before we left that I would probably have a migraine by the end of it.  Sometimes I hate being right.  I guess it is the combination of the loud music, flashing lights, noise, etc.  I have been feeling very sorry for myself lately since I have been having so many headaches again recently.  Yesterday after driving home I took Imitrex and basically glued myself to the couch for the remainder of the day.  For some reason I remembered the line from the movie "As Good as it Gets" when Melvin is in the psychiatrist's office and turns to speak to the patients in the waiting room saying "What if this is as good as it gets?"  I feel the same way.  After all the conventional and unconventional therapies I have tried to get rid of or at least decrease the number of my headaches, I feel like I am trapped in this vicious cycle.  Immediately postop after my stimulator implant life was so much better.  I have slowly slipped back into a cycle of nearly constant headaches.  At first I tried pinning it on things such as the weather (which is still a huge trigger for me), certain foods, even being out in the sun too much.  Sadly, the list keeps getting longer again until I am left doubting the list is actually a list of things causing headaches and is actually a list of things I just happened to be doing on the days I had headaches.  I visited my St. Jude rep to adjust the settings on the stimulator and I was prescribed Imitrex, which actually has aborted 2 of my migraines, which I am still thrilled about.  Unfortunately I am still having headaches!!!  I am going back to my surgeon next month for a followup.  Maybe I should ask about Botox again.  Sometimes I think I would like to go to a deserted island for a week but it would be my luck to be stuck on an island full of noisy tropical birds or screeching monkeys!  I just don't want to be the mommy saying "Shh mommy's head hurts" anymore.  Hopefully soon I will find some type of relief.  I guess it's time to do some more research.

My poor forgotten blog!  I have not updated in so long I am ashamed.  After my surgery I had such wonderful relief!  Unfortunately over the past few months lately I have been having many migraines again.  Gone still are the stabs so that is a huge victory in itself.  I am considerably disappointed from having so many migraines again though.  I am currently on day 7 of a daily migraine.  :-(   My rep from St. Jude is on vacation.  He did leave a number on his voicemail for another rep to call while he was out, but since he is going to be back on Monday I decided to wait and contact him since he knows my history, etc.  Hopefully he can make me some new programs that will zap away these hateful migraines!!  If not, I am afraid it will be back to the drawing board for the migraine portion.  I am NOT saying that my surgery was in vain.  It has been a HUGE blessing.  I do not have daily pain anymore as I did for years.  I have many, many headache free days, which was something I only dreamed of before the stimulator was implanted.  I have tried eliminating "trigger foods" but there are still 2 things that cause a migraine regardless of what I eat, do not eat, get enough exercise and sleep, etc.  They are weather changes such as barometric pressure drops before a storm system and hormonal fluctuations.  Nothing I can do about those two sadly.  Hopefully I will find an answer soon.  I did some research about areas with the most stable barometric pressure.  The 2 US cities with the most stable barometric pressure are Honolulu and San Diego.  I also found that the Atacama desert in Chile gets only about 1 inch of rainfall a year.  I tried to convince hubby we need to relocate but he is unconvinced as of yet.  My daughters on the other hand were very easy to persuade moving to Hawaii could be a good thing for the family!

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!"

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!).