I’m still being treated for Lyme (one year and four months). The details of my treatment aren’t important at this point.

I still have pain. I try to deny it. When all the pain seems to go away, I am so happy that I go around telling everyone that I am finally better. Then it comes back and I pretend it hasn’t. I pretend to be fine until I can’t pretend anymore. Then I get so angry that I cry, because I’m not fine.

Today, as I sit here writing this, my head feels like it’s going to explode. I would almost welcome the explosion if it meant the pain would stop.

I’m closer to fine. Really, I am. I’m closer than I have been in years. It’s progress, even if it isn’t a cure. I can’t help wanting a cure. I don’t want to admit that 7 years is a long, long time to feel like hell.  I don’t want to admit that there is a part of me that fears that it will go on forever.

I hate the pain. Sometimes I find myself hating people who have no pain at all and complain about stupid, stupid things. I find myself jealous of what other people can accomplish because they aren’t distracted by pain. And then I feel shame, for feeling hatred and jealousy.

I’m just being honest. Are my feelings so unique?  I think it’s part of the process of learning to live with chronic pain and never truly being fine with that reality.

And now I’m complaining again. I usually try to be upbeat and encouraging for all my readers here, but maybe we all need to vent.

Do you feel like complaining? Ranting? Getting it all out? Has NDPH ruined your career? Your marriage? Your dreams?  Do you feel like less than you want to be? Less than you should or could be?

I do.

Tell me about it, so I don’t feel so alone in this. I will certainly understand.

Wishing you a low pain day, as always-

Amy

My daughter walking on air at the New York Botanical Garden.

It has been 11 months since I was diagnosed with Lyme and nearly 7 years since my New Daily Persistent Headache began. I think I am finally recovering. I think I am ready to rebuild my health.

I still have headaches, but not daily. Sometimes not even weekly. That alone is something to be tremendously thankful for – and I am.

I haven’t come out of this without a few battle scars. My mind is not crystal clear like it used to be. Okay, maybe it was never crystal clear, but now I have trouble remembering things, occasionally I type words that are different than the words I mean to type and things get generally mixed up around here. And no, I’m not that old that this could be chalked up to age.

By the end of the day I have trouble walking up the stairs because my legs hurt (typical Lyme). And 11 months of antibiotic treatment has left my digestive system in a bit o a mess.

I’m done complaining. It’s been a long road. I’ve accepted that I will never be who I was before this. It’s okay. I don’t have a headache today.

It’s strange sometimes. It’s been so long since I have felt well, that I am not sure how to handle it.  I feel a little bit like an ex-con who is trying to fit back in to society after 7 years in prison. I fear that I will be thrown back into pain at any moment.

This is the best problem I’ve had in ages. I’m so thankful for it.

Wishing you all something to be thankful for this holiday season. 

Amy

The Cast of Stand By Me

Over the past couple of months I’ve had relief from my head pain. I’ve been making plans to get back to my life. I’ve been thinking ahead, not just considering how to get through the day.

Most of my Lyme symptoms have gotten significantly better. Some symptoms have completely vanished. My legs and joints don’t ache constantly and I can see that I’m making progress.

Except last week, when the head pain came back. I’ve been on antibiotics for five months now. The head pain was with me for several days last week. This morning I woke up to it.

Just like old times. My head has hurt all day and it is crazy to me that I just accept it, like an comfortable old sweatshirt pulled out of the bottom of my closet.  I’m thankful for the break I’ve had from the pain. I’m worried that it will be here tomorrow again, just like old times. I don’t want to be so comfortable with the pain. It shouldn’t be expected in my life, yet it is.

Pie eating contest in Stand By Me

I start a new antibiotic tomorrow. If I drink alcohol while taking it, it causes projectile vomiting. I don’t know why, but every time I think of it, I remember the movie Stand By Me and the pie eating contest. And the projectile vomiting. And I laugh. I may have to have a glass of wine just to see what it’s like. It would certainly entertain my kids. Well, maybe not.

Ah, the things I do for entertainment. I think I might watch the movie again. I guess it’s a classic now (am I really that old?).

Thanks for standing by me through this.  This is a long road we’re on, eh?

I’d love to hear from you all. I’d love to hear that someone out there is getting better, but if not, a simple check in would be great.

Pain and Isolation

I’m two months and two weeks into my treatment for Lyme Disease. My headache (which I would have had for 6 years this week) is slowly diminishing. I have head-pain free days. I have days that are mostly pain free, give or take a couple of hours. My headaches, now only occasional, haven’t been past 5 on the pain scale in the past two months.

I should be jumping for joy, right? Well, I am, kind of. And I’m scared, too, because it could come back, or the arthritis in my joints could never leave, or the brain fog could never blow out to sea, or any one of the random Lyme symptoms could be with me forever.

I am optimistic. My first doctor insisted after thirty days of treatment that I should be fine and refused to treat me further. So I found a LLMD (Lyme Literate Medical Doctor) who is now treating me carefully, aggressively and will not give up.

A constant headache is a symptom of Lyme. Lyme tests are accurate only 60% of the time.  Think about that. Do you have any other symptoms? Achy joints? Muscle pain? Has your eyesight deteriorated? My doctor said that it is often possible to run from your symptoms for a long time – as I did – but eventually they catch up and overtake you.

You may think you are crazy (also a symptom) or suddenly have ADD or early onset Alzheimer’s.  You may have tingling in your face or chest pain.

All I can say is this: I have had Lyme all along. I know this now. For 5 years and 9 months I tried to treat a headache exclusively. If there is any chance at all that you could have Lyme, regardless of what previous tests have told you, please, please seek out a LLMD.

The treatment for Lyme has been rather brutal for me. I can stomach the massive doses of antibiotics but sometimes the pain is overwhelming, the fatigue makes it difficult for me to get my kids out to school in the morning and it is, in a sense, more depressing than the headache I have come to know and deal with.

I guess I knew how to push through that. This is new pain. I keep telling myself it will go away, I am getting better. Everyday without head pain should be celebrated because it is progress.

I can’t help be a little angry, a little cranky sometimes. Ultimately, I hope, I have found my cure.

I just wish I could cure all my readers here as well.  Thank you for all the support, comments and emails over the past months. I deeply appreciate it.

Living with chronic pain is a life altering, isolating experience. I hate looking at the past 6 years of my life, knowing how the pain was a shadow that went everywhere with me, my constant companion.

What will a pain free life look like? I hope to find out soon. I hope you do too.

Chronic Pain

On New Year’s Eve, my doctor called with the results of my most recent blood tests. The past few months have been difficult for me. In addition to the headaches, I began getting twitches, buzzing, creepy nerve feelings in my legs, then my arm, then my face. And the mind fog…which I just assumed was a progressive stage of mommy brain…has become worse.

I found a new doctor, thinking this was most likely unrelated to my headaches and didn’t feel that I had any time to wait to see Dr. Rozen or the ability to drive myself across two states feeling this way.

The new doc  sent me for blood work, including a test for Lyme. In the almost six years that I’ve suffered with NDPH, I’ve been tested for Lyme at least three times. I remember sitting in my first neurologist’s office and telling him about the strange rash and the leg pain.  The leg pain often increases with the head pain, though not always.

I remember discussing Lyme Disease with each doctor along the way.

This time, I tested positive.

Initially, I thought that this must be new. I must have been bitten over the summer. But the more I read, the more I think about it, the more I wonder if Lyme has been the cause of my headache all along.

I keep looking back at the past six years of my life. I’m at a loss for words to explain what I am feeling. There is hope, regret, anger and fear all wrapped into one.

The hope of being free from head pain, completely, for real, is rising up in me, offering me  a life that has been gone for so long. I realize I’ve been squashing this hope for some time now, tired of the constant, continuous disappointment that comes with trying new medications or alternative treatments.

The reality is that Lyme Disease is no picnic either. It isn’t always a simple treatment, but at least you know your enemy.

I don’t have many answers right now. I think this is good news for me, though I am not entirely sure.

I guess we’ll just see how things play out from here. I started treatment late on New Year’s Eve and I hear it takes a fair amount of time to begin to feel better.

Is it obvious that I don’t feel like myself?

If you have NDPH, have you been tested for Lyme as well?

Is anxiety making your headache worse?

Are we underestimating the role of stress in New Daily Persistent Headache?

One of the first things my doctor asked before giving me a diagnosis was “Were you under a lot of stress before the onset?” I answered “I don’t think so.”

To me, my stress level was always about the same. High. But that’s normal, right?
Recently, I looked more carefully at my answer, which was difficult because I had to look back more than 5 years for the answer. And these days, my memory is a little foggy. Which I blame on the headaches and not my age, thank you very much.

I began thinking about this a couple of weeks ago, after a visit to my new eye doctor. I quickly explained to her what had happened last time I went for an eye check up.

I had a panic attack, out of no where. I passed out cold in the chair while the doctor was looking at my eyes. It was a scene. I was embarrassed.  It was more normal (maybe) when I passed out in the dentist chair. It didn’t happen often, but it was always sudden and unexpected.

My eye doctor, who is a 38 year-old mom of three girls (just like me) shut the door and began telling me her story. She suffered from anxiety and headaches as well. She didn’t have NDPH, but she did have very frequent migraines. Life was overwhelming. Recently, she started taking a medication that is intended to lower blood pressure, but has been found to alleviate anxiety.

And her headaches are gone.

She suggested I talk to my doctor. The medication is Atenolol and a quick search will show that it is used successfully by many to treat anxiety, without the funky side effects or mood altering fogginess that comes along with meds like Paxil or Prozac. It doesn’t cross the brain barrier so it doesn’t really treat depression or anxiety in the typical way.

It treats your body and alleviates the pain, achiness, that feeling in your gut like someone just scared the life out of you. It treats the stress that your body feels. It lets your body relax, if not your mind.

I haven’t tried it yet, though I plan to. It makes sense on some levels for me to give this a try.

And looking back, I remember the day my headache started. It was that different from any other day, but perhaps it was the final straw that pushed my stress level over the edge.  An old friend had called to wish me a belated Happy Birthday. It was a friend who always gave me grief about one thing or another, always on my case for some reason.  Then, I received a call informing me that my grandmother, who was recently admitted into a nursing home, was being left there alone for the Easter Holiday and I was furious. I decided that my husband and my girls (2 at the time) would drive four hours to spend Easter with her.

So I didn’t consider either of these things massive stress.  BIG Stress is losing a loved one, changing jobs, moving or a sudden illness, like NDPH. What I remember most is anger over both situations. And I can’t say that I am talented when it comes to handling my anger, ever. I keep it in. I smile and deal. I rarely tell people how much they irritate or hurt me.  I never have.

Is peace what we need?

Could anger have brought on such pain?  Pain that still doesn’t want to go away? I have no idea. I’m reaching for any possible solution I guess. I think that our response to stress is not fully understood. I would love to hear your thoughts.

I’m curious, as always how stress and anxiety affects your head pain.  I’m I alone in this? I struggled with anxiety and panic attacks from time to time before having NDPH, but it wasn’t a problem at the time the pain began.

What was your experience? Does stress NOW make your pain levels rise?

I have made it through 5 1/2 years of almost constant pain. There are days that I think I can handle anything at all because of this experience and that the rest of the world is just full of whiny wimps crying about their colds, allergies, acid reflux and irritable bowels.

Do I sound a little bitter? Yeah, I’m working on it.

I might as well be wearing a cape and tights. I am a wonder to myself. Except when I’m in tears from the pain, beating myself up for eating a little brownie and triggering misery in exchange for a few minutes of chocolate heaven. Or when I realize I lost another day to the pain, unable to push through it and get work done, or enjoy a beautiful day with my kids.

So I’m weak and invincible. I’m angry but hopeful. I know that I am better now than I was 5 years ago.

From what I have seen and experienced, it seems that as the years go buy, we go through some kind of mourning process. First, we can’t believe this is happening to us.  How could this be happening? How could the doctors not know what to do to help me?

Then we deny it and try to go on with our lives. When we realize our lives are just not what we want them to be, we hit bottom.

Depression sets in.  It only makes things worse. So we get up again and try to put things back together. We try new meds or alternative treatments. We keep going.

We keep going. We may be sad for the life we wanted and don’t have. Sad for the precious time our pain is stealing from us. But we go on.

Acceptance. At the 5 year mark I hit acceptance. I hear of people having NDPH for 10, 30, 40 years. If that’s what I’m in for, so be it. I’ve made it this far.

I’m not saying that I’ve given up. I’m saying that I accept this situation for what it is and that has been empowering somehow. This is it. I’m going to deal now. It still effects me daily, and people don’t understand, but I can handle it.

At least most of the time.

What about you? Are you sinking, swimming or treading water?

The New Pup

There is really good reason I haven’t been around for a bit. Unfortunately, it is not because I am cured of NDPH. It’s because I have taken on a freelance writing job that is a bit more long term than I am used to.
It’s almost like a real job.
And, yes, I still manage my three kids.
And my headaches.
But the truth is, my head hasn’t been as bad this season. At least, not as bad as it usually is in the spring. I’m not sure why, I’m not asking any questions. It could very well be the weather. It’s been a beautiful spring here this year, very unusual.
Anyway, my new gig is as a beat reporter (that term just makes me laugh a little) for an online news website that is hyperlocal. I don’t even have to leave town for my job, which is a huge deal for me. My beat is schools, so it really is a terrific fit.
My kids love it, except when I work on the weekend, then they complain. But they may find something to complain about anyway.
They also let me write a parenting column, which I really enjoy. It’s called Adorable Chaos, so check it out if you are interested.
Once in a while, I’m just a little humorous. I still have not been able to find the humor in this headache situation, but I try.

My update,  in summary is “hey there, hope all is well, my head still hurts (I’m sure yours does too), but I’m managing to work more, be back soon and oh yeah, I got a new dog. “

That cute little pup at the top of my post? She’s our new little love. We adopted her just a few weeks ago. Isn’t she cute?

The Derby Racer, At Rye Playland

In my mind, my life has always been spinning. Around and around I go. The same thing happens again and again and again.

At least that is how it seems.

It just keeps spinning.

Sometimes spinning is  fun, like the ride I loved as a kid, The Derby Racer. It gives you the feeling that you are cantering free on the back of horse.

Going around in circles can be a nightmare when there is no brake to stop the ride. My headache is that nightmare.

The pain came back again. Slowly, it fell over me, like a shadow, like the sun setting, the pain fell down on me.

It feels like a darkness, a shadowy sheet that hangs over my life and causes me  first, irritation, then aggravation, then agony. And then it begins to fade, slowly back to aggravation, then down to irritation.

It goes in circles, but I want it to stop.

I feel like I am back where I started. What are my choices? What do I try now? What did I do or not do that brought this back? Is it completely out of my control? It cannot be. It cannot be.

Do you wrestle with this idea as well? That there must be some reason? There must be something you can do? Something, somewhere must be to blame for every up and down and around and around again?

And so I hate this headache again. And here is where I get stuck spinning in anger that I cannot make it stop, that no one seems to be able to make it stop.

Riding free...

And going around like this, of course, gets me nowhere.

So now you know my frustration and the cyclical nature of NDPH in my life. I know I should be thrilled that I had a break from the pain. It is so much more than many people with NDPH get.

But it isn’t good enough.

I’m not settling for it. I don’t even want to speak of it out loud.  I want my life back. I want to be free.

But it has come around for me again.

.

We all could use a break from our headache...

Ever since this awful headache first began nearly 5 years ago, I’ve held on to the belief that it would leave me just as rapidly as it arrived.

We are all looking for a cure for our pain, or even a little temporary relief to give us a break from the agony.

Last winter, I had a full two weeks pain-free. I thought it was over forever. I was wrong, but still hopeful.

It’s happening again. I seem to have caught a break. I’ve been out of pain entirely now for a least a week, maybe more. I haven’t been keeping track, because my life has been so busy. I’ve just been doing things.

I’ve been making plans, as if the pain isn’t going to come back to rule my days.

My break from pain follows three months on the Doxycycline / Singulair combo, followed by treatment of a long-term sinus infection that I didn’t even realize I had.

Then I quit smoking. As a reward (HA!) I needed a major root canal and had massive tooth pain for the week of Christmas. My dentist is a compassionate man. He gave me lots of hydrocodone for the pain. I was unable to determine if I even had a headache by that point!

I have never had a doctor claim they could cure NDPH. They seek to help, of course, but they don’t fully understand what causes New Daily Persistent Headache, so how can they offer a cure? In fact, I would be rather suspicious of anyone who promised a cure. But maybe that is just the skeptic in me.
Chiropractors are sure it’s all because of my spine. Massage therapists believe it’s all in the trigger points and muscles. My acupuncturist was certain it was my out of balance meridians. The Naturopath said it was all in my gut, and my digestive system was the root of my problem.

I tried their cures, with minimal success.
BUT my very first MRI, taken close to 5 years ago showed that I have Spheniod Sinus Inflammatory disease. Or somehting like that. My first neurologist never bothered mentioning it. It went untreated, which is kinda… really… bad. Spheniod Sinus Inflammatory Disease can be “devastating” if it isn’t taken care of, according to my current doctor.

I only found out about this when my first doctor packed up and moved to another state. I was called and informed that I needed to pick up my records. Nice.

So, whether or not the sinus issue was a major player in my pain for 5 %$^!* years, I may never know.

If my headache will return as if it never left, I don’t know.

All I know is this:

The doxycycline / singulair combo brought my pain down significantly. I switched to minocycline after a month or so because of a few side effects.  I had very few high pain days after beginning treatment. On the pain scale, a 4/5 was about as high as it went and only once a week.

I have food triggers. Chocolate brings on the pain fast and furious. I can save myself a week of agony by staying away from it.

My 3 delightful (and loud) daughters are absolutely not triggers! They were home with me 24/7 when the pain left. The noise level they maintain can surely annoy me, but I can now confirm that it in no way is the cause!

Smoking (previously my pain management plan) had a negative effect on my condition.  ( I know, I’m shocked too!!!)

***You should know that I have quit smoking several times in the years that I’ve had the headache. This time, my motivation was not to get rid of the headache, but to help the rest of me feel good while I was dealing with the headache.

I didn't have a headache when I helped my youngest daughter build her first snowman!

I made the decision recently that I simply can not live like this anymore. It’s completely unacceptable.

I want my kids to know me as the strong woman I once was. I want them to see me healthy, or at least dealing well with the chronic pain. They deserve better than what they have been getting lately.

If the pain returns, I’m not going to give in. I’m going to keep trying to find another break.

Over the years, I have heard from people who have found their cure. For some, its surgery. Others have been misdiagnosed. Still others find a medication that keeps it in check.

I heard from one NDPH sufferer that found a cure by “throwing everything he could find at his headache.” He bombarded his system for months with every natural / alternative healing method he could find…and it worked for him.

It seems to me, from the people I’ve spoken with and read about, that those who find relief or “cures” are the ones who are relentless in fighting against it.

So here are a few one word resolutions for 2010, for those of us fighting this battle with NDPH:

RELENTLESS

FEARLESS

(It won’t kill you, but don’t let NDPH and the fear that it will never go away steal your life)

HOPEFUL

Wishing you a year of healing-

Amy