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Wednesday, May 7, 2014

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?