Crazy as a Loom

Friday, May 4, 2012

A.M. rant


It is nearly 7 months now that I have had a constant, 24/7 headache.  It seems impossible to be true.   But it is, and wishing it weren't so doesn't really help.
So I try not to go there.
Sometimes people say things like, "I don't know how you do it."
Well, that's easy.  I have no choice.
I suppose I could curl up in a ball someplace, but lying on the couch watching Jerry Springer really isn't an option.  I am not a fan of daytime TV, and lying down usually does not improve my head pain one tiny bit.
And to be honest, even kicking back in my own living room to get through bad days is not an option that makes any sense, because my mother's TV in the back of the house, is a dull roar that drives me fairly insane.
So, no, that's not a plan of action.
Keeping going is the only thing that works for me.  Acting 'as if' everything is ok.  Sometimes I just move a whole lot slower than usual for me, and I get a whole lot less done.  And I squint.  Probably making permanent furrows in my brow, which honestly, doesn't bother me one freaking bit at this point.
And I ask L a LOT, 'did I do this already?'

Trouble is, the rest of my body feels pretty good.  I have no other big complaints.  So trust me when I say that having this headache mess with my life on a continual basis makes me pretty angry at times.  Angry and frustrated.
It would be easier, somehow, I think, if I knew WHY I was having this headache.
After months of MRI's, CAT scans, lab work, doctor's appointments, injections, etc, I still have no real answer, or at least nothing that makes any sense.
The probable answer is that I have a 'new daily persistent headache'.....yup, that's a diagnosis.  And the reasons for it are many, and the treatment for it is obscure and sketchy.  According to everything I read, it is likely to last 3-5 years.  That would really suck, to lose  the quality of these good years to a headache.  Because you know I'm not getting any younger.
Oh, yes, I try to tell myself that it could be worse, that so many other people have much worse medical issues to deal with.  And that works, to an extent.
But the pain between and behind my eyes is sometimes so intense, that any reasonable argument is lost, no matter how hard I try to accept it as the truth.
I get up every morning, with HH in tow, I prepare for the day.  Sometimes early, like today, I sit on the couch with my cuppa tea, and tears come unbidden.   Necessary you might say.
And always, I try to plan my day, create an agenda, purpose, distraction.  And luckily, the studio is a busy place with lots of things that need to be done to pay the bills and make it work, so there is no lack of content to fill my hours.
That's how I do it.  Somewhat desperately, at times.
Last week, the acupuncture seemed to help.  This week, HH rages on unaffected by needles stuck in my body, oblivious to my despair.   Bastard.
You can only imagine how I hate HH.
And how intent I am on living my life in spite of him.  It's a "he".......how could it be otherwise???  I couldn't blame this on one of my own.
My one wish would be that there would be ONE doctor who would take this mystery on, who would orchestrate what I did next, what test, what procedure, what treatment I tried.  Call him a lead investigator......that's what I want.
But of course, that doesn't happen.  You go to your GP, he does what he does.  It doesn't help.  Then you are left to decide what you would like to try next.   I have 30 years of nursing experience, which may or may not make any damn difference at all.  What do lay people do, I ask you??   With no background at all?   I'll tell you.......they are fair game for our medical system.   That's what.

I have been asked if I would consider that maybe it is Chiari after all.  And my answer to that is this:
One doctor said he thought it was Chiari.  Two neurologists and one neurosurgeon said that was bull, and not even to be considered.  Then there is the fact that I have had this all my life, why now?  And why two months after my head injury?
And then there is the simple fact that if someone said it was Chiari, there is not much chance that I would ever agree to the surgery that fixes it.  I have researched it along the way, and it is just too risky and too traumatic.  I can function now, and after that surgery, maybe not so much.

Now that I have unloaded my grief and frustration on you, and probably bored you to tears, let me just say this.......I am so grateful that you listen, that you comment, that you support me on this roller coaster ride with HH.  It does mean a lot to me, it really does.

Sometimes it feels that I always have someone to talk to about it, even now, at 7am, on a rainy Friday morning.
Thanks, for being out there.







25 comments:

Valerie said...

I'm so sorry.

As a retired physical therapist, I know exactly what you mean in wondering how lay people find their way through the healthcare maze.

I wonder if there's any biofeedback or relaxation training that might be of help to you? Lord knows, you seem to have tried everything under the sun.

Here's hoping today is a better day.

Janet said...

One last thought, allergies?!?

Daryl Edelstein said...

I wish you could kick HH to the curb ... you need a Dr House .. some amazing diagnostician

HH didnt begin right after your accident, umm , is it possible between the accident and the onset of HH that you did something more to your neck/spine/head? Something not big, something that just happened and you kept going? Something that might have added to something smaller that happened due to the accident? Just noodling here ... puzzle solver in me finds this very bothersome that no one can point to a specific cause .. gentle hugs ...

thecrazysheeplady said...

I am so sorry. I was so hopeful with the acupuncture :-(. Head injury (I'm new here...)? What about the football players with head injuries in the news. One of their doctors? Call the NFL :-D.

Abby said...

I suffered a severe back injury nearly 12 years ago - and live in constant pain. My heart goes out to you and like you, I understand about "you go on because there's no other choice." Pain may be a constant companion but, it is not a friend. As for your headaches, the head injury does seem like the most likely culprit but, have you considered the possibility of TMJ? (temporomandibular joint dysfunction - possibly even brought on by your accident?)

Trish at Tangled Threads said...

You continue to rant when you need to. I will continue to visit every day and read all that you write. And think about you. I wish I could do more. Trish

joyceetta said...

Hilary
I'm pleased you felt comfortable writing what you did this morning on your blog. I don't have any medical answers for you.....wish I did. But, I do know how valuable it can be to have an outlet for frustration and anger. I hope you will continue to use writing for that purpose.
And....just wondering....did you ever consider my suggestion several weeks ago about looking into someone with Upledger Cranio Sacral training?

claudia said...

I am grateful that you feel you cn confide in us.
I have no suggestions as a lay person for a next step. It's seems that when I have something to take care of it, is akin to pullng teeth to get any one to agree that I have something(?!?).
My prayers and high hopes go to you for some kind of relief from somewhere...anywhere.
(((((HUGS)))))

Anonymous said...

Hi Hilary,
just keep on writing, hopefully it helps you to "vent" or share. I can only read and offer support when there is something to say. I love your work, both weaving and writing. Sometimes being focused on what you love, helps with pain.
Lee Anna

Anonymous said...

Hi Hilary,
just keep on writing, hopefully it helps you to "vent" or share. I can only read and offer support when there is something to say. I love your work, both weaving and writing. Sometimes being focused on what you love, helps with pain.
Lee Anna

Karen said...

Don't give up, keep trying your options.... something IS going to work and it WILL go away. Don't give up on the Acupuncture yet and throw in the massage if you can. Your head muscles won't release their grip unless you get the rest of your muscles to relax.. hard to do when you're in continual pain.

mudmaven said...

Rant on - whenever needed. We're here to listen even if we can't do anything to help, we can listen and sympathize and send good thoughts your direction. ~chris

Anonymous said...

For a starter, you haven't bored us. On the contrary, it's amazing to hear your courage and determination in the face of this monster attacking you. And you're right, what choice do you have but to carry on. Still, it's courageous and you are inspiring. Please keep writing about HH. Keep being honest. I'd like to think we can help just a tiny bit by standing by you, listening and caring. Headaches are miserable, headaches wreck life. Hang in there and don't give up on looking for an answer. Becky

Montana Wildflower said...

I was going to suggest what Janet did? Is it possible that allergies may be exacerbating the problem? Not that they are the cause, but because you are feeling so much more miserable right now than you were last week. There may be a lot of sinus pressure right there between and behind your eyes.

(((hugs)))

Gayle said...

Yes, yes, YES, Karen is right add massages, as many as possible. Find a really healing, therapeutic person.

I love everything you write, EVERY day. You are such an inspiration. Your photos are the best! Loved Roy-Boy on the walk. What pure love he is. The kitties renew my soul. Well, everything you share is so precious to us all. TY, Hilary.

Gayle

Teri said...

Unfortunately the medical system is frustrating. Some hospitals have special departments that work with head injuries, wonder if there is one in your area.

Country Girl said...

I know it's far, but one of the top Headache Clinics in the country is Diamond Headache Clinic in Chicago.

There is also the NY Headache Center in Manhattan but Diamond comes up in the search for the best.

xoxoxo

Frank's Corner said...

http://www.upledger.com/content.asp?id=61

I still think you might benefit from cranial sacral therapy. If you want to try it, find someone who has done extensive training with the Upledger Institute. It won't matter if they are a chiropractor, osteopath, or p.t. The training is the same. I had a herniated disc in my neck and this was what helped me the most. And, I have had patients who have benefited greatly from this work. It is very gentle but powerful.

Sue said...

As a self-educated lay person, I can definitely say that the medical establishment does not seem to be terrible interested in helping folks with chronic pain. I've been dealing with my back issues for 15 months now. Got fired because I couldn't sit for the 3 hours stretches my job required. Nothing has helped so far, so I just keep on going. You're right that curling up, while an option, isn't a viable choice. Some days are tolerable, some days are hell. You've got to get through them all. Chin up. Hopefully HH will take a permanent hike soon.

Cupcake Murphy said...

This would NEVER bore me. Never. I have never met you but I think about you every day and hope pray wish for you to have no pain.

Tammie said...

I'm always checking in, praying that today you'll have the answer and the cure for your headache. Well, not today, but maybe tomorrow. Praying for tomorrow.

hugs

ain't for city gals said...

I have always told myself if I ever had pain or illness that was out of control I would go to Mayo Clinic...they gather info and work as a team. Also, have you thought about Botox..it does help with migraines.

Jill of All Trades said...

Yes vent, vent, vent! I've too thought allergies. Used to be, before I got my allergies under control I had constant headaches for days sometimes, not as long as yours. I know it is frustrating, but know we are here with the shoulder to cry on!

Anonymous said...

Rant on! Let it go! There are obviously many out here concerned and willing to "listen"....and many that hope you find relief or a solution. We may not respond daily, but we're here....reading and hoping for the best for you.

Fran in rather damp Maine

Porch Days said...

Talk to us anytime you need to. We are all pulling for you. I'm sure you have checked out everything BUT - have you had your eyes checked and could it be blood pressure?

This from Wikipedia-
"Unfortunately, NDPH can be very disabling because it often does not respond to preventive or abortive medications. Some cases have shown successful preventive treatment with Neurontin (gabapentin) and Topamax (topiramate). Doxycycline has also proven effective in a small study. [1] Otherwise, since few successful treatment regimens have been devised specifically for new daily persistent headache, most specialists work with the same medications prescribed for chronic migraine."

Have you tried migraine medicine?

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