Thursday, September 23, 2010

Bad Headache No. 5 2010

Equipment Malfunction

Today has not been a very good day.  It is just a little over a month since my last Bad Headache Day, and I'm in the midst of another one.  The Headache has been rebellious and I am still not over it.  What is really bad is that I have had an equipment malfunction with my headache controlling occipital stimulator.  I tried most of the morning to get The Headache under control, finally resorting to very strong pain medication, and had to call in sick today.  I'm not very happy at all about that.

I don't change the settings on the stimulator unless my pain changes.  As pain increases I start changing up the programs.  I had not messed with it since coming back from Arizona.  When I tried to turn it on today, the LCD display that shows me which program I am using did not light up.  I could hear it beeping, and THEN it turned itself OFF, as in no occipital stimulator working at all.  Panic!!!  Disaster!!! Woe!!!  I messed with it, replacing batteries, shaking it a little, poking the buttons and finally my head buzzer started up again.  Whew!  The display never did light up.

I called St. Jude/ANS but by then The Headache was going into the horrific stage in spite of strong medication.  I couldn't find my rep's name so I just called their general customer service line, and they got me to research department.  Yeah!  My name and address were in their database!  I think they are going to ship me a new controller since the tech dude couldn't get it to work either.  I wonder if somehow being scanned at the airport has ruined it.  I worry that my current settings will be lost, and they work so well most of the time.

Later this evening (or technically yesterday evening)  I tried to turn down the stimulator, and it started beeping randomly and then turned itself off again.  Panic!!! Disaster!!! Woe!!!  It took almost an hour of poking buttons but I got it started again.  I guess I'm going to have to be "over" stimulated until I get a new controller, because by the time I got the occipital stimulator restarted I was in a world of hurt and I don't want to repeat that.  Even the right side of my head is ouchy now, wishing I was through with this episode already.

The Legs and The Belly are also being non-cooperative today.  Maybe its the fall equinox that is setting everything off.  The hives are worse even with the increased thyroid medication.  I was so hoping that the change in dosage would do the trick.  Sigh.  The problems all seem to feed off each other.  Have debated going to the ER, but just don't want to face the wait once I get there.  It's going to be a long week.  Patience, patience, patience.

On an unrelated subject - just so I'm not the totally self absorbed whiney person I want to be tonight - my sister brought over some homemade pickled okra.  I'm not an okra fan - it's just too slimey for me  - but her pickled okra was crisp and crunchy. She threw some jalepeno's in with the okra so it had a little kick to it.  Hoping there are some left by the time I can really eat something of substance.  My sister also makes some delicious home made ketchup and she does it all without a recipe.  I shall never be that type of cook - I'm so envious of her cooking skills!  I can only follow in her footsteps if she writes it down!


  1. Thankgoodness for tech support!

    Sorry for your head pounding madly in your brain!!! Dear one I pray so much for comfort for you!!

  2. I wish I could cook without a recipe! I'd love to be one of those people to just create amazing dishes. But...I hate to cook, so that'll never happen! with this ONS, do you have a constant "buzzing" in your head? Still researching, trying to decide if that's a route I wanna go. Although, this new neuro I am seeing seems very old school and conservative. Not sure if that is gonna be good or bad.

  3. JBR: Yes thank heavens for tech support! Unfortunately there was no functioning for them to troubleshoot. Broke is broke.

    Jessica: There is a "tingly" type of sensation on the left and left rear side of my head - different types of tingly depending on which program I use. Most of the time the sensation reminds me of what it feels like to have a pair of glasses perched on top of your head - in fact I have a hard time knowing if I have pushed my glasses up on my head - I have to feel the top of my head to see if they are there - weird, huh?

    Some people don't have theirs on 24/7 like I do, because they have episodic headaches where mine is a constant headache that gets worse at sometimes but never stops. I don't even notice I have the stimulator on anymore until the pain gets worse and I need to change the settings.

  4. Sorry you're feeling so badly!

    I hope a good night's sleep helps you to feel better. WAY better.