Intolerant to What????

Here we are on the 20th of  December, and I think I'm close to finding a cause (and a solution!) to the second worst headache of my life.  It appears though I'm not going to like the answer.

After months of suffering (on and off), with this headache humming along at about a three out of ten, one day I had lunch (chicken noodle soup and a piece of white bread and butter.)  My headache exploded  immediately after eating. I was back to a seven out of ten.  I thought of what I'd just eaten and it hit me "I'm intolerant to gluten, but where did this come from out of the blue?"

After a bit more research I realized the gassy stomach ache that I once had my neurosurgeon checking to see if my two distal catheters were entangled, were also a possible symptom of gluten intolerance.  That stomach ache inexplicably started right after my last shunt surgery in 2013.  My research continued, gluten apparently can cause migraines, could this sensitivity date back to 2006 when my migraines started out of the blue?

I also have this itchy place on my abdomen from time to time for a number of years, but no big angry red rash.  Could this also be a sign of my gluten sensitivity?

I never related the itchy spot on my abdomen, with the occasional gassy stomach, with the occasional migraine, or to this monstrous four-month-long headache. (I knew I got migraines from foods I ate, but gluten  wasn't on my radar as far as foods to avoid.)

Gluten is found in only three things, wheat, barley and rye.  I dislike rye bread, so I know that's not the cause. Over the years I've eaten a lot of  whole wheat bread thinking it's good for me.  I did a one-time experiment recently and ate a bowl of beef-barley soup.  No headache.

It appears I may not be intolerant to everything containing gluten, but solely wheat.  How inconvenient.  At Whole Foods I found some Hemp bread, that should be fun to try, but I'll be careful as to when I try it. And how do you make pasta without wheat?  I found some wheat free pasta at Whole Foods of course.

Although it may turn out that this latest nasty headache is terribly inconvenient, it also may not be related at all to my shunt or hydrocephalus.  For that I'm eternally grateful.

Yes, I have to deal with yet another set of headache-related problems, like anyone who suffers from hydrocephalus. However, the fact it isn't shunt-related makes me feel like 'One of the Lucky Ones.'

And now a dry cough

With this second worst headache of my life (that's still going on) I've now developed a dry cough.  The last time I had a dry cough for any length of time, it turned out there was a  break in the proximal  catheter of my ventriculo-peritoneal shunt.  With the combination of a headache and a dry cough, if you look at my history I suppose I should be concerned.

However, I'm not.  I don't have the sense or feeling of anything poking me from the inside, like Edwin.  Thus, all I can think is - to use one of "their" words - all's stable with my shunt.  Besides, I'm "One of the Lucky Ones", I seem to hang on to these things far longer than the average of ten years.  I'm expecting my "new" shunt placed in 2013, to last 27 1/2 years.  Just like the one before it did.  I don't believe or expect anything less.

The second worst headache of my life continues......

Fortunately now it's not every day all day, nor is it a 7/10 (most days) when it does return.  However, it's still annoyingly there.   My forehead and frontal lobe still hurt, and it still hurts to lay on the back of my head.

I suggested to a friend the other day I do a DIY frontal labotomy, she thought that was a bad idea.  I agreed, reluctantly, remembering the frontal lobe was responsible for all things that made us human: emotional expression, problem solving, and memory (among others.)  It's also responsible for our personality and ability to communicate.  I like my personality, so maybe I'll hold off on the DIY frontal lobotomy at least for a while.

I'm going to see an Otalaryngologist (an ENT) next week.  Maybe he can tell me why, besides the headache I've just not been feeling like myself.  In August I had big black bags under my eyes.  Now the blackness of the bags is gone, but the bags remain.  The sinuses in my cheeks hurt, and there's also sinuses in ones forehead (a-ha!) Last Tuesday I felt dizzy (off balance).  I vary between sniffing so my nose won't drip, to having a gallon of  goo run down my throat.

Although my Neurologist took a C-T scan of my shunt and said everything was OK, who knows, the ENT may send me back to my Neurosurgeon.  Oh the joys of hydrocephalus being the lens through which all physicians see things through.

Second Worst Headache of my Life

The headache started on my birthday, August 30.  I rated it a seven out of ten. The last headache I rated a ten out of ten the pressure from the build-up of cerebral spinal fluid had gotten so bad, it put me in a coma.  September 2, I went to a previously scheduled appointment with my neurologist and we talked about the headache.  She gave me a six day course of steroids and told me to go and get a C-T scan.  The C-T scan showed nothing wrong with my shunt, but did show an arachnoid cyst.  ("A WHAT???") I thought.  I found out they're brain fluid filled sacs that live in the area between you brain and your skull.  The headache continued, but so did my life.  It wasn't a migraine, I had no sensitivity to light, no throbbing, just this sense of pressure the size of an orange (maybe a grapefruit) from my hair line to the front of my ears.  Sometimes it would creep down to my forehead.

The steroids helped for two of the six days I was on them, then the headache returned to a level seven.

By the beginning of the third week of the second worst headache of my life, I thought I would hit my head against the wall if it would do any good, but I knew it wouldn't.

By the fourth week, the pain level at least lessened, but a new feature made it more awkward.  It was painful to lie on the back of my head. I e-mailed my neurologist and asked if the cyst could possibly be growing, as I had discovered its existence was noted in an MRI I had in 2003.  I also told my physician that I asked my Mum if this was something I'd had since I was born, and she said no physician had ever mentioned it to her when I was an infant.

My neurologist again said exactly as she said before, nothing more, nothing less.  The cyst looked
"stable."

My neurologist then gave me a three day course of two prescriptions, an NSAID (that doesn't react nicely with another of my prescriptions,)

The other is a phenothiazine.  This class of drug is normally used to help with nausea for Cancer patients but remember I have no nausea, (this isn't a migraine).  Hilariously enough, nausea is one of many unpleasant side effects. (Huh?)  Between the two I can expect: drowsiness, lightheadedness, dizziness, blurred vision, upset stomach, nausea and vomiting.  Lovely.

Alternatively, this compound is used to treat mental instability (!!) some kind of red blood cell
disorder and last but not least neurogenic pain.

Ah, now we're getting somewhere, yes I'm in Pain! However, the nausea-stopping, mentally stabling, red-blood-cell correcting drug, treats pain caused by a dysfunction of the nervous system.  Wouldn't a cyst in your brain, that is of unknown age or origin, that you more than likely didn't have at birth be considered a DYSFUNCTION OF THE NERVOUS SYSTEM?????

Edwin

Edwin is the name I gave to the old fractured catheter I have in me.  He runs all the way from my neck to my abdomen, but the painful fracture runs right along my sternum.  During my last shunt surgery (August 2013) Edwin was disconnected from my old shunt and just left to decay further.

Now Edwin is approximately eighteen inches of brittle silicon tubing abandoned in my chest wall and abdomen.   His name is the same as the middle name of my current neurosurgeon.  Pieces of Edwin will only be removed when they become more troublesome than they are now.  As Edwin continues to break apart (he is a now a 29-year-old piece of once-flexible, now brittle tubing), his additional pieces could pierce a nearby internal organ (liver, bowel, stomach), or appear externally through an already existing hole or through my skin.

Though the chances of any of these thing happening are rare, Edwin does continue to poke at my sternum, where the original fracture is. I think the pain is due to inflammation of the tissue surrounding my sternum.

My "New" Shunt and the Weather

I call it my new shunt because next month it will have its two year milestone.  My last one was with me for twenty-seven and a half years.  I'm going to be flying back from Seattle that day.

There seems to be so much that affect this "new" shunt, especially changes in air pressure.  I can get a nasty headache from flying, but I also call my shunt my own personal barometer.  I can tell when even a rain storm is approaching.

I thought that would be the extent of it, until it started to get really hot and humid.  With lots of heat and humidity comes a feeling of light-headedness that I haven't experienced before.  It's for that reason I know I'm not experiencing anything Sun related.  Besides at the time, I had only been sitting in the heat for ten minutes, and I had already prepared with SPF 30 sunscreen, a hat, and sunglasses with UVB protection.  I don't think the feeling was "all in my head" either.

Hydrocephalus Association Fundraiser

Although hydrocephalus affects as many people in the U.S. as juvenile diabetes or Down's syndrome, it receives a lot less attention.  Each year the Hydrocephalus Association organizes a fundraising 5K walk in various cities.  I will be walking in this year's walk and hope to raise money to help fund research for a cure.  Hydrocephalus is managed by putting a shunt and catheter into the brain to drain excess cerebral spinal fluid that the brain (for whatever reason) is unable to do for itself.  Shunts were invented in the 1950s, and although the design has improved, the basic premis remains the same.  A shunt is just a management tool for hydrocephalus, not a cure.  That is why we walk every year to raise money for research

I was born with viral meningitis which damaged the meninges surrounding my brain.  These membraines are responsible for regulating the one pint (or so) of  CSF that passes through the brain daily.  Once my meninges were damaged, I developed hydrocephalus.   I had my first shunt put in when I was nine weeks old.  Please help me raise funds to find a cure, not just an improvement to the proverbial "wheel."

As always, if the link doesn't work, please cut and paste it into your browser, it will lead you to my donation page.  Thank you in advance.

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1129992&supId=421274808

I Guess I Should Consider Myself Lucky Rather than Neglected....

Two weeks before my next neurologist's appointment I get a phone call saying she can't see me that day (for whatever reason.)  I'm rescheduled for another appointment in October.  So instead of seeing my neurologist every four months, it will turn out to be every seven months.  I guess I am one of the less-needy of her patients.  The Neurologist want to see me twice a year; the Neurosurgeon once a year.  Not bad for a gal who was born with viral meningitis and still has a shunt for hydrocephalus.

I really AM one of the lucky ones

I just came back from get-together with my hydrocephalus group.  There was just a few of us.  I was not expecting to see one of the attendees.   He is in his twenties, and just had a seizure the other day, and a shunt-o-gram to boot.  A shunt-o-gram involves injecting radioactive fluid  into the valve of the shunt then waiting two hours as physicians watch to see if the fluid passes normally through the shunt.  If it doesn't pass normally, it would indicate a blockage.

I have not had a shunt-o-gram in thirty years, and have not had a seizure in thirty-seven years.  Sometimes I have to remind myself, if I think I got a bad lot in life, I really didn't.  It could have, and could continue to be a lot worse than it is.  I must remember to count my blessings.

Norway

We went to Svalbard to watch the total eclipse of the sun. The atmosphere was as clear as you would want it to be, but the weather was cold!  It was  minus twenty degrees Celsius, and even with hats, gloves, scarves, long underwear, etc., it was still cold. However, seeing the eclipse was great.

I experienced a new adventure with my shunt and hydrocephalus after staying in the Snow Hotel in Kirkness.  The Snow Hotel is basically an igloo, you sleep in an enormous cotton pillow case inside a military grade thermal sleeping bag on top a block of ice, inside your ice room.  When I awoke the next morning, I felt very dizzy.  I wondered if the below freezing temperatures had somehow changed or froze the settings of my adjustable shunt.  After gathering up our sleeping gear we went to the breakfast room which was at regular temperature.  Once I had been there for a while (less than 15 minutes) the dizziness dissipated.  It was very strange.  I haven't yet found any professional literature on adjustable shunts being at below freezing temperatures for extended periods of time, and the effect it may have on them.

A Less Common Complication of Hydrocephalus

I've had a stomach ache for 18 months. My neurosurgeon says either of the distal catheters may be causing the pain.  The new one  (almost two years old) or the old one almost thirty years old.   Once he figures out which one is causing the pain it will need to be trimmed.  If it's the old one he'll need the assistance of another surgeon to disentangle the old catheter.

The good news is the old shunt lasted 27 1/2 years.  The bad news is the complications of the remaining, aging catheter will be with me forever.  This may be just a hiccup, or this may be just the beginning.

Iceland was fun and Greenland was amazing. Who knew that rock and ice could look that beautiful.

Hydrocephalus and Travel

I got in a car accident last Thanksgiving.  In the Emergency room they were not only concerned about a concussion or a possible brain bleed, but also that the shunt I have in my brain to treat hydrocephalus may have come dislodged.  Luckily it hadn't.  They sent me home with only a dull headache that lasted until December 18.  Then the headache went away for a few days.  However, as soon as I got off the plane for our Christmas trip to Seattle the headache came back for a couple of days again.

The same thing happened after the plane ride home.  The headache came back for a couple of days.

I hope the headache doesn't come back when we go to Brussels in March, or then just as I recover from that headache (or maybe before that one's even gone), we get on another plane to Oslo a few days later.

Nothing seems to help this headache, in fact everything I've taken thus far seems to make it worse.

There lies the "beauty"in shunts used to treat hydrocephalus.  They don't always work perfectly, especially when they've been knocked around a bit.

For those of you out there who don't suffer from hydrocephalus, or don't have a child who does, consider yourself lucky.  It's a life of headaches, migraines, brain surgeries, disabilities (both visible and invisible,) and always waiting for the other shoe to drop.  Even if you haven't had anything but doctor's visits for years, sooner or later that other shoe will always, always drop.  It's just a matter of time.  Another brain surgery or other difficulty is always around the corner.

The transition from  a child with hydrocephalus to an adult with hydrocephalus is daunting. You need to know the signs for yourself that your shunt is blocked, infected, or otherwise failing.  You also need to be mindful, unlike me, that if your head gets hit hard (like in a car accident) your shunt could come dislodged.

I've been dealing with this for 44 years,   Compared to others I've met, I've had very few brain surgeries, my husband and I just experienced our first one together, and this year we celebrate our tenth anniversary.

If all of today living with hydrocephalus had  been born a few decades earlier before shunts were invented, I wouldn't be here at all.  However, because I consider myself to have come through relatively unscathed,  I suppose I'm one One of the Lucky Ones.