My name is Kathy and I am a 44 year old mom, wife and grandmother. I work full time and take care of my grandson every weekend and he is 2. I have had migraines with and without aura since I was 14 years old. However my life took a grand tour and introduced me to the wonderful world of clusters and occipital neuralgia as well back in 2008….then threw in chronic migraine on top of that!!!
I would like to share a happy story of one who has lived this living nightmare. I so understand and I know it is difficult and frustrating to explain to someone why you get headaches, how it feels and what your thought process is while dealing with a headhache and your work and your family and grocery shopping and the phone and …..
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So as most of you here as well have had this experience…let us try preventitives!! Okay…here we go…tried everything and had some of the most amazing reactions to medicine. Topamax-got glaucoma in both eyes, Indom. and Calen plus 3/4 pitting edema,other preventitives…..did not work. I could continue to list, but you get the idea. Not a fan of ….let’s try this. But I would/will/do for relief. I always say “If this could just break” my husband,who is nurse, does understand as he has had 3 migraines in his life! He laughs because I can get three in a hour!! We deal with alot of things with humor in our house. My kids are 22, son who also gets migraines, 19 daughter who also gets migraines. They soooo understand now why when they were little I would say, please…ssshhhh…..just for a bit. They get it now!
Abortives..all – don’t work except for fioricet and Imitrex injections. Well medicine overuse since you start taking 2 fiorcet to get moving along with the Imitrex injections and then later when the next cluster comes…..you debate..should I wait?? How many today?? Oh what should I do??? So you wait and thank goodness you did cuz here comes a doozy!!! Pain scale 1-10…really cuz I think this one is a thirty at least and I have to make sure I take medicine now so I can drive home from work as it pretty sunny today! (When I took Toradal my boss would give me injections, at work!)
Greater occipital injections(GON)….the first one worked for 2 months!!! Not a single headache with the GON shots and lidacine in the right temple and eye area! That was Rochester, NY at the Flaum Eye Institure with Dr Friedman! Called to schedule another appointment and she has left and OH…btw…your insurance refuses to pay as experimental so can’t schedule unless you are paying. Freakin Fantastic! Went to Cleveland Clinic….apparently migrainers are all addidicts and that is okay cuz we do cleation therapy and you would have to stay in town and come everyday (and pay co-pays) get an apartment and not work….REALLY??? Who can do that??? Besides, here is my medicine bag…I WANT TO BE OFF ALL MEDICATIONS….The percs and darva and oxys….really????? No Thank You…They don’t work. I don’t want them!
So, I have a fantastic Neurologist and we decide to go to Philadelphia at Thomas Jefferson Headache Facility. I went and the appointment was great!
While I was there I started getting a really good cluster and the Doctor caught it. I was not going to say anything till she was done talking, but she said…”Your getting one now, right?”, I said yes and she put me on oxygen for 10 minutes and it does work for some. It did not work for me and at this point I was at a 9. ( I always just jump right up there!!) She went and got the GON and lidacine for my head and did the injection into the GON. My husband sat in on this one and said, “WOW”, you hardly flinch. I know it is going to help me and that is all I need to think about! Really? Shots in you skull make you happy? If it works it does!!!! Put me on lithium at 150mgX2, keep doing fiorcet and Imitrex for abortives and we will get you in here for IV Therapy.
Oh and we are switiching you to DHE for shots and no more Imitrex and no more fiorcet. OOOOKKKK….this better work cuz I can at least get some relief from them.
OK…..A week stay inpatient….will insurance pay? Start trying to get this figured out since they are the only ones in the United States with this new therapy. Is it going to be paid? Can I get time off of work? Will this work? Will this work?
Get admitted on May 15, 2012 and hooked up to Lidocaine, Reglan, DHE-45, bendadryl, some other things, but what happens astounds me!!!!
I feel GREAT!!!! Not just, oh…no headaches….I FEEL GREAT!!!! So, IV from May 15, 2012Tuesday- to May 19, 2012 Sat. and discharged home with mexiletine 150mgX3 a day also added to my mix! So now I take Savell for my fibro as well, Singular and Xyzal for my asthma and allergies, Lithium, mexiletine for headache prevention, libid for the intenstinal spasms, and melatonin.
Today is Wednesday and I still have not received a headache. It feels amazing and wonderful and scary all at the same time. Hoping that some of the community will be able to use the information as well.
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