Another EEG

The sleep-deprived EEG came back inconclusive. Since my last brain surgery in 2016, my sleep hours have increased (on average) from seven to eight-and-a-half hours. Sometimes I sleep ten-plus hours a night. Since November, I always feel fatigued. Now waiting for scheduling of a 3-day EEG. That just sounds nasty. Imagine sleeping with electrodes on your brain for three nights.

EEG Test Improved Immensely During the Past Twenty-Five years

Sleep EEG Wednesday, in the afteenoon!! I had to be awake from 3:30pm Tuesday until 3:30 pm Wednesday. It was more like from 11:30am Tuesday. I did sneak in two hours of "rest" from 1:30am-3:30am Wednesday. Late Wednesday morning my Mum phoned to make sure I was still awake. I told her:

"This is the worst medical test I've ever had." Her response:

"That's saying a lot. You've had a lot of horrible things done to/for you throughout your life."

I responded "I think I prefer brain surgery."

Probably the lack of sleep, talking. The test wasn't too bad. They paste the eletrodes to your head now. Back in the day ('70s, '80s) they used superglue.

Selling Wristbands to raise research money for hydrocephalus

I have blue wristbands that have the words "Strong and Brave" imprinted on them.

Anyone who has hydrocephalus is strong and brave.  These wristbands would work for anyone who's current or former military, a firefighter, a police officer, or has gone through any emotional trauma.

The cost is $5.00 each, free shipping within the USA.

Please contact me at Felicity.Gorham@comcast.net if interested.

Some Sage Advice I Heard Recently

1. Get Up
2. Move On
3. Keep Fighting
4. Don't Get Exhausted by Your Efforts

I Swear I Have Two Brains

The first one is the one everyone else has.  The second one is in charge of my headaches and has a mind of its own!

Since 2013 I've had an adjustable shunt, it's changed me into a walking barometer.  Right now the sky is blue and the sun is shining, but I have a weather migraine.  Because of these migraines I usually know, with more accuracy than our local tv weather guy, if there's a thunderstorm approaching.

I'm betting there's going to be one later today.

My 'other brain' is responsible for: regular migraines, which I usually get after eating something on my 'do not eat-it will give you a migraine' list.  Until recently I couldn't eat cheese without getting a migraine two days later.  However, now I appear to be able to eat most white cheeses?  Why only white cheddar and not yellow cheddar?  Ask my 'other brain'.  How did I suddenly become able to eat pizza at all (including triggers of cheese, cured meats, etc.)? Why can I eat some pizza and not get a migraine and still get a migraine if I eat others? I'm not in charge of that.

I've also suddenly developed a sensitivity to gluten, which by-the-way only exists in wheat, barley and rye.  Why can I eat whole barley (as in the rice-looking grain) but not something made from barley?  Why can I eat some wheat bread and not others.  These gluten headaches appear immediately after I've eaten something that offends-you guessed it-my 'other brain'.

My 'other brain' has also decided I can't lie on the back of my head, or sit in a recliner without getting a headache.  I have to put a tiny pillow behind my head while in the recliner, and use a small travel tempur-pedic-like pillow to sleep with.  Just the sort of thing you want to deal with while getting a massage, or about to try to meditate your poisonous thoughts away.  Apparently the 'other brain' doesn't understand these headaches aren't relaxing, and they add more to the poisonous thoughts.😒

I don't think an 'other brain'- ectomy is available currently, but maybe with the advances in modern medicine, who knows anything can happen.  I survived infant viral meningitis, I'm thriving well for someone who acquired hydrocephalus as an infant.  I'm actually blessed.😇

A Treatment for a New Type of Headache

I went to my latest tri-annual neurologist appointment.  All appears well in my migraine world .   In fact apart from a spate of bad headaches over the past few days, and a week of them at the end of May, my migraines (all three types) appear to be diminishing. 😊

However, I've developed yet another rare type of headache; Occipital Neuralgia.  This headache is caused by a tightening of your Occipital nerve.  The nerve runs from the back of your skull all the way to your eyes.  However, I also feel the pain in my trapezius muscles, the back of my neck and my right eye.  😩

I tried all manner of home remedies; cold compress for my eye, warm compress for my back and neck, neck exercises to loosen the tight muscles, meditation, relaxation exercises and lastly taking muscle relaxers. Although I am careful not to take too many, remember the end of the movie Sixteen Candles? Woops, might've just dated myself there. 😮

My neurologist suggested I see a physician in Pain Management (been there before!).  The treatment for Occipital Neuralgia appears to be injecting a long-lasting pain reliever at the point where the Occipital nerve starts at the base of your skull.  Now doesn't that just sound lovely? 😒

Yeah! Back To My Normal

I went to see my neurosurgeon yesterday.  Having two shunt revisions in one year, I was seeing my neurosurgeon more often than my neurologist.  It's almost been another six months since my last shunt surgery (11/22/2016) and I'm feeling no symptoms of a malfunction.

As a result, my neurosurgeon declared I was free and clear from seeing him for another year.  Of course, we agreed within that year if I start to have symptoms of another malfunction I will make an appointment to see him sooner.

I was told by someone close to me "Hope for the best but expect the worst."  I've decided to hope for the best.  I hope this shunt lasts at least the average of  ten years, if not more.

Add Another Physician to the Team

My Neurosurgeon suggested I go to a Neuro-Opthamologist, because I've had this headache on the back of my head for over a year now.  At first I and my neurosurgeon believed the headache might be caused by an arachnoid cyst I have in my fourth ventricle.  However, when the cyst remained stable, I believe my neurosurgeon thought to send me elsewhere to look for clues to the origin of the headache.

The headache is different.  It mostly appears when I rest my head, or lie down on any surface (the  recliner, dentist's chair, massage table, floor mat, you name it.)  It's met with immediate pain in the back of my head.   I need an extra tiny pillow (thanks Vanessa for making it for me 😊.)

It didn't say on my appointment reminder how long my appointment would last (ten minutes like with the neurosurgeon, 20 like with the neurologist).  I researched it the morning of my appointment and found out it was going to last almost THREE hours. I'm certainly not used to that.

My appointment consisted of many different eye tests, with and without my glasses, questions about my health history, (meningitis/hydrocephalus/migraines), and the same neurological tests I've been through thousands of times in my forty-six years.  The neuro-opthamologist determined the cause of this specific headache to be Occipital Neuralgia.  What?!  Apparently it's: "a condition in which the Occipital nerves that run from the top of your spinal cord up through one's scalp are inflamed or injured.   The N-O was unable to determine the cause of the inflammation:  Was it previous damage due to a lifetime of hydrocephalus, whiplash from one of my car accidents 2013-12014, or just plain anxiety. 

He was also unable to tell me anything I could do at home to relieve the pain, which when at its worst runs from my shoulders to my eyebrows. I found a good stretch that helps most of the time.  Meanwhile I wait to hear if I need to see a pain specialist, who will inject a nerve-blocking agent in to my occipital nerve(s).    Another exciting medical adventure awaits.

Bonus undertaking, I get to see the Neuro-Ophthalmologist yearly from now on.  

Feeling Like Myself Again

I hadn't been feeling "normal" since the middle of September, However, after going to all my exercise classes for the past three weeks, I finally realized I now did feel like myself.  as a result, I felt ready to take down all the get-well cards I received after surgery. 

Starting to feel better.....but

After a shunt revision, laparoscopic surgery on my peritoneal region, and the worst cold in five years, I am starting to feel better.  I'm not sleeping 12 hours a night any more, more like nine or ten.

However, today I awoke with a monstrous headache of unknown origin.  The barometric pressure isn't currently changing, so it can't be a weather migraine.  I don't remember what I ate two days ago, but after taking two migraine pills the headache was as bad as when I awoke.  I tried an Advil cold & sinus (taken for a gluten headache,) no relief.  I then tried 4mg of  Zanaflex (a muscle relaxer) and a nap.  When I awoke, the headache was STILL with me, but down to a dull roar.  I've eaten regularly today, so maybe this is just a headache, that all people with hydrocephalus suffer with.

Despite the headache, I was able to get out and run some errands.  Most of the time I don't let a mere headache get in the way of my life.  The last thing to try is some mindful meditation.  That might help to relax the headache away.  Hopefully there won't be a repeat tomorrow.

Maybe this will be the last hurrah, after this headache I can start to get back to feeling like myself. :-)