Crazy as a Loom

Friday, October 10, 2014

Update for all my blogger friends.

So many of you have followed my 3 year journey with this headache.  Yes, it has been three years this month.
From the fall, to the first horrific surgery, to the second and third surgeries, you have been there supporting me and sending me good wishes, and support, at times when I thought I could not do one more day of it.
I have had times.....weeks even....of such a lowkey headache, that I thought I was in heaven, only to be reminded of its power when it came roaring back, putting me on my spot on the couch with Roy, interrupting my life, wreaking havoc with my plans, forcing me to my knees too often for me to count.
I have been angry, sad, mystified.  Why?  Where is this coming from?  My neurosurgeon has read my latest MRI and said it looks terrific (as terrific as a head can look after they have been in there with drills and such THREE times)
So what is going on???
He suggested that I look into my sinuses, or actually have someone else do it.
So off to the ENT I went.  He ordered a CT scan of my sinuses, which I have not received the results for.  He put me on a 5 day course of Prednisone, to see if I got relief.  He said that will tell us if your sinuses are the problem, it just won't tell us why they are the problem.
Well, I just finished the 5 days......and it was lovely.  I had nothing more than a THREE the whole entire 5 days, and even into the 6th.  I found myself thinking and feeling normal things, like I was almost NORMAL.  There is no way to convey the relief that washed over me, even knowing that it might be brief.  I wrapped myself up in it, relished it, dreamed of a future that has seemed almost impossible to imagine.
Last night, before my "presentation" on weaving rag rugs and Crazy as a Loom, at my weaving guild meeting, I realized it was back.  Like a low key hum at first, then louder and louder.
I was so happy to fall into bed when I got home, knowing sleep was the only escape.  This morning, FULL TILT SMASHER right between my eyes, over my forehead, over my nose.

One one hand, I am relieved....maybe this is the answer.  On the other hand, a little voice says, "oh no, what will they do to you now???"

But larger than that is the question, which boggles my mind.......WHEN, dear God, WHEN, did my headache (which has not changed in character......facial from hairline to tip of nose, temple to temple) WHEN and HOW can it be that it went  from my Chiari and basal invagination issue to my SINUSES???

What???   Were both issues there together, and one missed the entire time??  Did one pass the torch to the other, and when?
But looking back to 2011, when this started, I was weaving selvedge on the Union on a sunny, October afternoon, about 8 weeks after my fall.  My headache started, little did I know that it would be with me every day for three years.  At the time I said to L, "this selvedge is bothering my allergies, and giving me a headache."
The nightmare began right there.   What is that saying on my sidebar, " You will never untangle the circumstances that brought you to this moment."

Oh, true words, how poignantly you strike my heart.


Denise at Autumn Sky said...

I remember you talking about the pressure changes and how they made your headache worse. Sinus pressure???? If the walk down this possible diagnosis helps, I say Hallelujah!

Country Gal said...

I do hope they can figure it all out and you can finally get relief ! It was being in prednisone for a trial of my Arthritic pain that caused my ear infection and sever Sinusitis as it is a steroid and it lowers the immune system, prednisone masks pain . I am off of it now and all is good but at the time I felt like my head was going to explode and the pain in my face jaw teeth and head was unreal . Please be careful being on prednisone . Thanks for the update and I do hope they can find a cure for you to put you back on track once and for all ! Thanks for sharing , Have a good weekend !

Country Gal said...

P.S I was put on heavy antibiotics to get rid of the infection of Sinusitis in my sinuses for a month of three pills a day and it worked ! It was my dentist that caught the infection in an full facial x ray and of my teeth !

JC said...

Thinking of you and hoping they can figure it out.


amyfibre said...

Not advice, but thought I'd pass along something my neurologist said. I have frequent migraines -- not triggered by food, but often triggered by sinuses, weather, stress, lack of sleep, and mild dehydration.

According to my neurologist, once my body started responding to stressors with migraines, that became the path of least resistance, so that anything that my body interpreted as a stressor came out in a migraine.

Even when I can't find a logical link between the stressor and a migraine, I find that he seems to be right. That's just how my body responds to something being "off" -- either environmentally or internally.

Regardless, sending light and love, and hoping you find answers and relief.

C-ingspots said...

Wow, I cannot even imagine the endurance and patience you've shown throughout this entire process. Dealing with pain, and doctors that don't really know how to handle it, must be overwhelmingly frustrating. Steroids can have complications, but then everything does. They also tell our body to just stop reacting to whatever it is that is irritating it. A great way to rule out options. Yes, they do subdue our immune system, but if it gets worse, they'll probably blame infection and treat accordingly. But if the steroids help, an allergy to something could be the answer. I pray that they find the answer and get you the relief that you deserve.

Susan said...

It is mind-boggling that you have borne up under that much pain for three THREE years! I cannot imagine, nor do I want to, what it's been like for you. I do hope that somehow, someway, the real cause is found and you get relief. You are in my thoughts.

Karen said...

Hmmm... Hilary. Try one thing for me. Take two Benadryl. Tell me what that does for you.


Acorn to Oak said...

I've dealt with horrid sinus headaches for years. They can be totally debilitating. I've even had surgery...which did NOT help. I've made changes to my diet and learned tricks that work well when I catch it early. I've even learned that gluten can be the cause of severe migraines and headaches for some. That doesn't seem to be the case for me but my sinuses can be irritated even worse by weather pressure changes and changes in humidity. Some tricks for me...if you might be interested in trying them...a neti pot, caffeine/coffee followed by a Claritin D and sometimes Ibuprofen (the caffeine helps it work better...weird but's even in a med that has caffeine/aspirin/Ibuprofen...but that makes me feel awful)....those are some of the most helpful for me. Good luck! I hope they finally get to the bottom of this and that it's something simple that doesn't require any more surgery. Take care!

Cait Throop said...

Hilary, has any doctor ever asked you what you do for a living? When we were there my sister could not stay because her sinuses started acting up and it did get me thinking. All that fiber dust. I know that weavers can get white lung like coal miners get black certainly seems like it could affect your sinuses. Anyway, just a thought. Gary has chronic sinus... xoxoxo

Hilary said...

You're approaching the end of this headache. You'll find the right combo that works for dealing with it and you'll be SuperSuper Woman (because you're already Super Woman through it all) once again.

Where did that cookie jar come from?

Pam in IL said...

I've only been following your blog a short time, but I can totally relate to what you're going through. I've been dealing with it since 1983 following a serious car accident. The headaches and sinus problems are horrible. Unfortunately, nothing has helped me. Please know that you're in my thoughts and prayers.

Penny Shepherd said...

Hilary, I just read your blog for first time today. I see you have been on a long and terrible journey. I see you had a fall and then it started to paraphrase. Have you every had a good check of your neck muscles? Particularly the scalenes. I treated a patient who had fallen from a ladder and began to have these problems, they found Chiari but could not resolve headaches or dizziness. Treatment of the muscles resolved her headaches and dizziness and normal function. Just a possibility that neuro docs and ortho docs don't usually look for.

Daryl said...

you've gotten a lot of good advice .. but you havent gotten mine .. yet .. my advice is dont listen to any of this advice .. wait til the ENT gets the results .. i can understand how no one looked at your sinuses .. why would they? they did a scan and saw the whatsits in your head/neck and rightly assumed it was the cause .. in the world of specialist missing a something is easy since no one today is Dr Kildare or Marcus Welby they are all focused on their area of expertise .. i am rooting for the sinuses to get drained and relieve this once and for all .. and i say this with empathy since i have just gotten over a raging case of sinusitis combined with bronchitis ... xo

Nancy said...

You must be desperate for relief. I so hope a cause is found soon.

Rosepath said...

I remember having a headache right above my eyes when I was about 10 years old. I woke up screaming and was taken to the emergency room. A diagnosis of Pott's Puffy tumor (yes, it's for real, google it) was made and my sinuses were drained and I took strong antibiotics for 6 weeks. I remember diving into a swimming pool the day before and something getting into my eye. Do you think that maybe some fiber got into your sinus? This is just a shot in the dark to maybe try to help you.

Thistle Cove Farm said...

Sinus and pressure change can both hurt something fierce. Hilary, praying for you, always.

Vicky said...

I have always loved that quote- so much. Yes, its the plain and simple truth.

Each doctor looks at "the problem" through the eyes of their specialty. So in cancer world, I have found, the surgeon always thinks surgery is the answer, while the radiation onc., thinks radiation will solve everything, and my medical onc., thinks chemo will take care of it! I pray you may be on a new path of discovery with a new set of answers that may help!

Country Girl said...

Can they put you back on the steroid on a low dose until it all gets sorted out? At least you'll get some relief. Yes - it does seem like three years. Three long and weary years as I watched you bravely face pain and circumstances that would have made lesser people (myself included) throw in the towel. I found out just how amazing a person you really are.

Welcome to my world.

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