Friday, May 6, 2016

Neurologist meeting; finally

I finally carved out some time to go see my neurologist. I had to wait outside his door for almost an hour, but he eventually came, and was surprised and smiled pleasantly when he saw me. I hadn't seen him for a year. He invited me in, opened up my file on his computer (I didn't have an appointment, remember), and talked with me as he ate his lunch. I apologized for stealing his lunch hour. He knows it's impossible to see him if you rely only on "the system" for your appointments. I told him my next scheduled appointment is in August, and things have been getting so bad that I resorted to barging in on him. He was so nice about it. Gave me his lunch time.

I told him about the constant, daily headaches. I told him about all the Excedrin and Advil I take daily just to survive the pain. I told him about the medicinal marijuana (he knew about that, of course, because he is the one who submitted the license request, as I was weaning off the Fentanyl). He didn't know that I didn't use the marijuana drops almost the entire time, that I just started two weeks ago.

His main response was:
"In no uncertain terms, you must wean off of the over-the-counter medicines." 
There is a name for what is happening to me: "medication overuse syndrome". It's well known.

He actually warned me of this over a year ago, but I was working on the Fentanyl weaning, and could not handle taking away my migraine pain relief.

He said that until I am off all the over-the-counter medcines, he can't investigate the source of the migraines. We can't get a proper reading on the frequency of the migraines until we know that they are not being caused by overuse of medicines. Right now what I am apparently getting are called "rebound headaches". Thing is, I take the medicine so much because my head hurts so much. How am I supposed to wean from that? Just have my head splitting open with no relief?

Yes, says my neurologist. He told me it's going to be hard, but just for a week. Not like the Fentanyl withdrawal which took 10 months. But this has to be cold turkey. No cutting doses... anyway a lower dose does nothing for my headaches.

He suggested to hospitalize me for the process. He said that they can give me a few different things which are not analgesics to help the pain and weaning process. I flatly refused to be hospitalized. No way do I want to spend any time in that hospital (or any, for that matter), doing what I can do unsupported medically at home. I hope. He warned me that it will be damn hard. Different completely than Fentanyl; it's an entirely different process in another part of the brain than where the opiods hang out. He said that if the pain gets too bad and I'm not handling it, I can go to the ER and get the cocktail that will help the withdrawal any time. I just have to explain what I am doing there, and that Dr. Ezra is my doctor.

I was crying buckets.
Like I said before, there is a special awful place for headaches. I have had lots of pain over the years... migraines included, but in a separate category. All the pain I've had in my hips, belly, thighs, you name it... it just effects me differently emotionally. I cannot take headaches. I am scared to start weaning. I am on a steady diet of Excedrin/Advil, almost every day. Overuse syndrome is defined by taking that stuff twice or more a week. Yah.

How the he^^ am I going to wean off these medicines? I know you are saying "if you could do the Fentanyl, you can do this". But it's not the same. Headaches are unbearable to me.

I am presently involved in helping my friend (who is currently hospitalized) and taking care of her daughter (6 years old). I love her daughter- it's a labor of love, not at all a burden, but there's not a lot of time to wallow in my headache pain without being able to get it under control.

I have to do it, though- I have to get off these medicines. My neurologist was 90% sure that the headaches will be less frequent when that stuff is out of my system. I have a headache at the moment, too. And I am so in need of Excedrin. I did take yesterday, because I am not yet in a position to wallow in my headache, as I said. Yesterday was a very long day. All the daytime hours were spent at the wheel, driving round-trip to Tel Aviv to the hospital so my friend could see her oncologist (taking the train for her is too taxing physically). Evening hours were back here in Be'er Sheva, checking her in to Soroka hospital. She is sick, but hopefully she'll be better with antibiotics. I got home from Soroka at midnight, with her 6 year old daughter. Yeah, we're tired. Understatement of the year.

I don't know when I'll start the weaning, but I have to deal with it. My quality of life has so vastly been reduced with these daily headaches (which sometimes turn into full-blown migraines, like twice a week). Next week holds our annual Israel Independence Day cook-out/picnic with a huge group of very close friends. I don't want to be 'out' for that. But I also don't want a headache. But even if I start now, it won't be over by Thursday when the picnic is.


You know how it's been so impossible to get an earlier appointment with my neurologist? That the secretary wouldn't budge from my August appointment, no matter how many times I called? Well, *presto*, sitting with the doctor, he gave me an appointment for three weeks from now. Only through him. It's enough to make one crazy. A magical appointment slot. Something from nothing. I've been so desperate for so long, week after week not being able to plant myself at his office on Wednesdays at 3, and now somehow the appointment fairies opened up a time for me.

So by the time I see him in three weeks, I better be off the medcines. Or don't go to the appointment. He- very kindly but firmly- said that he cannot take care of me as long as I am taking OTC medication. He cannot evaluate any source or do any clarification tests (MRI) until I am off the medication. Only then would we have a pattern of headaches without the meds.

Then, says Dr Ezra, we need to work on getting off the sleeping pills.

How did this become my life?
How did I become this person with the medicines? I was never like that before I got NF. I never took anything, didn't have migraines very often. 

Pain shifts one's world. One's entire universe shifts when one is suffering with constant pain. It's not at all the world of the well. There is a barrier to that world. That's where I'm at... and it's gonna get worse when I stop taking the headache medicines. 

I keep having more hurdles to jump before I can appreciate what well-being feels like.

How did I get in so deep? And this is *after * going off Fentanyl.

I am still taking the marijuana drops, three times a day as prescribed, but it does nothing for me or my headaches. I think I need a bigger dose, but I am wary of going higher. I don't want another thing to wean from in my future. Or maybe it'll wind up being totally positive for me and I won't ever have to go off. But optimally, it's clearly better to be on no medicines at all, and especially not long-term. It will be helpful to have the marijuana drops while I am trying to go off sleeping pills.

I've been on the sleeping pills for almost nine years now. Nine year anniversary of NF is coming up.

On a good note, the day of my waking-up-from-coma anniversary, which falls on the Jewish holiday of Lag B'omer (in about a month), is planned to be a great day this year! Robert & I are going to see Elton John in concert here in Tel Aviv!!!!!!! It's an amazing story how we are going to be there....

I had mentioned on Facebook that I wanted to see Elton John when he comes, but the tickets are too darn expensive. Well guess what? Our dear friend Ken Quinn took up a secretive mission to send us to the concert! He corresponded/spoke to a ton of friends, asking if they are interested in donating to the cause of sending me & Robert to the concert, and not only collected enough for the *close seating* tickets, but also for a pre-concert dinner! Un-buh-leive-able!! The word 'gratitude' seems too overused of a word to express how I feel about this... but yeah... humble gratitude, amazing warm loving thankfulness, and feeling like the most blessed person on the planet to have these people. And to have fantastic Elton John tickets!! {{grin!!}}

Our friends are a blessing in a zillion different ways, and our community is amazing. I can't imagine where I'd be without you all....

We're going have to do this again... the weaning... I need your support... I don't want to do it. I am scared, upset with myself, frustrated, and, well, *really* scared... of having my head splitting open with pain and having no recourse. Well, there is the emergency room and the "cocktail" in an IV drip that could help me. But how, when, how and when??



  1. You will do this. You will do this. You will do this. Hugs from Jerusalem.

  2. Man things we can do. Maybe now is the time to go to Chaya's house. Or we will set up a round the clock assistance schedule. Or check into a hotel or anything for this to happen because happen it must.

    1. Thank you, my dear friend.
      I am going to think it over on Shabbat.
      I love you.

  3. Sending love and strength to you! You are right...there is a "special place" for migraines.

  4. Sarah, you can do it. Advice: start on Friday morning, through Shabbat, day three is the worst. Worst. Then mild improvements.

    I know you're a caring and loving person, the week you're down will be hard for you and your family. Don't take on anything else, that week.

    Sending you gentle hugs and continued strength.