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

Physical therapy can help alleviate head pain.

I recently received a personal story from a reader about her struggle with New Daily Persistent Headache and the treatment she used to lead to a recovery.

I’m sharing it here with the hope that it will help someone reduce, or even eliminate their pain.

From Carla in San Antonio:

” I was diagnosed with NDPH back in January 2010.  My headaches started late November of 2009 and after visiting several neurologist; I was finally given the correct diagnosis.  The reason I am reaching out to you and everyone else is because I want to let everyone know that there is hope out there.  I lost an entire year of enjoying my 3 yr old because I was in bed with so much pain.  I was extremely sensitive to noise and well, 3 year olds make plenty of wonderful noise.  Maybe it’s premature but I’ve been NDPH free for 2 months.  That in itself is a miracle.  I wanted to let everyone know what helped mine go away and maybe give some hope out there to those who are still suffering.

The doctor that diagnosed me was Dr. Randolph Evans from Houston.  Then my follow up doctor was Dr. Yanko Yankov from San Antonio.  I’ve been through every test (MRI, MRA, MRV) and have taken so many medications including the worst one, Topamax.  Dr. Yankov shares a facility with a physical therapy team.  I asked him if we could try physical therapy as part of my treatment and he definitely thought we should give it a try.  He is a wonderful doctor with an amazing bedside manner.  We basically treated what could be some triggers.  I had a lot of tension in my neck and back so I went to physical therapy.  I was given massages and treatment to ease the tension and I also saw a chiropractor for adjustments.  The physical therapy was the trick.  I started going 2-3 times a week and eventually went down to once a month.  I saw results within the first two weeks and I dwindled off my medication.  I also had a tendency of grinding my teeth so I went to an oral surgeon (Dr. John Young- San Antonio) that made a “proper” mouth-guard that I wear every night.  The headaches never fully went away until recently but I noticed incredible results and my headaches were more manageable and less frequent.  I hope this is helpful to anyone out there.  I understand how incredibly painful it is to have this condition and how it can test your faith.  Try to find the triggers and alleviate them one at a time and hope your pain improves and eventually goes away.”

If you have any questions for Carla or for me, please leave them in the comments section.

Wishing you a low pain day-

Amy

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?

Is a book on NDPH needed?

I’ve been toying with the idea of writing a book about New Daily Persistent Headache for years.  There doesn’t seem to be one clear place to find information about it, and advice is scattered around the web, in forums and on a few random blogs.  I would like to write the book that I wish I could have read when I was first diagnosed.

I have recieved countless emails over the past two years from people all over the world suffering, looking for help and support. I’ve collected dozens of stories, many similar to my own.

I need more! If you would like to share your story, or be interviewed for the book, please contact me in the comments below or via email. I’d love to hear more about your thoughts and struggles, the medications you have tried (successful or not) and the alternative therapies you’ve explored. I want it all.

The focus would be on personal stories as well as treatment options.  I’m hoping to consult with a few well known neurologists that treat NDPH.

What are your thoughts on this? Suggestions? Ideas? Please share your opinion in the comments section and participate in the poll below.

As always, wishing you a low pain day,

Amy

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?

This is me, the morph. I mean Marf. Oh whatever...

The typical look of  New Daily Persistent Headache…

It all started when I was a teenager. I drove my sister out to Long Island to see a doctor we not so lovingly nicknamed “Dr. Psycho” because she was just a little odd. Well, ok, she seemed way off to me, especially when she looked closely at me with strange amazement when I walked into her office, as if I had just landed my space ship on her front lawn. I left my sister in her care and returned an hour later to be assaulted by this woman, holding photographs of bizarre looking people with freakishly long arms and fingers and long skinny faces.

She said I was a morph. Or at least that is what I heard her say. She said it was dangerous to be a morph, because they often die instantly from aneurysms.

“All things considered, not a bad way to go,” I thought. I was 20 years-old. Perfectly healthy. I was convinced that it was this woman who needed a doctor – not me.

“But I don’t look like that!” I insisted. I still insist, 18 years later, because denial is a tough thing to rid yourself of. I agree, I’m long. Long legged, long fingered, long faced. Paint me green and I could pass for the wicked witch of the west for sure.

But a morph?

So then I went to see Dr. Rozen, who knows a whole lot more about NDPH than my previous docs. After he talked with me, examined me, checked the flexibility of my neck (indeed, I am freakishly flexible) he left the room. When he came back, he said something odd. I thought it was odd.

I don’t remember the exact words. Something blah blah New Daily patients all look alike blah blah blah, you’re a morph.

Seriously. I almost feel out of my chair. NDPH patients are typically long, thin and super flexible. Not like elastic woman flexible, but I think the term is hyper flexible or hyper mobile or something like that. I refuse to confess to you how long it took me to understand that the word was MARF and not MORPH.

They are often athletic, often  gymnasts and dancers. Dancer, that’s me.  Specifically, we are hyper-flexible in the area of the cervical spine.

So, I used to do this dance move (that I was very proud of) where I would spin and release my head to swing from shoulder to shoulder. I can still do it. It’s side show freaky.

I just did it for my kids and they love it.

Yes, now my head hurts more, in case you were wondering.

Unfortunately, I was unable to locate any photos of “morphs”, like the ones Dr. Psycho showed me all those years ago. I did notice that many people with Marfan Syndrome look…well…kind a normal. Just long, like me.

These beautiful people have Marfan Syndrome

The truth is, those truly suffering from Marfan Syndrome live a shortened life span. They can die rather young and suddenly, from heart and lung problems if it goes untreated.

I’m going on memory here – sorry if all of my facts are not crystal clear after consulting Dr. Google.

It isn’t good. That’s what I am trying to tell you. And I don’t have a clue if I need to be treated in some way for this. I don’t know if I really have it.  I guess I can just add it to the list of issues…because it simply was not enough to have to attempt to have a sunny out look on life while suffering from a five year long headache…now I have to worry about dropping dead on the spot at any random place and time….

Yes, I am being dramatic. Did I ever tell you I studied at the American Academy of Dramatic Arts? Well, I did. But in this case, I am not exaggerating.

Here is a video I found at the National Marfan Foundation that can clarify the syndrome for you. I fear I am not doing an adequate job explaining the problem through my ramblings:

For the record, I do not have hammer toes, although I will admit that my feet are the most hideous part of my body. I do, however,  have some strange stretch marks…I thought that was where the aliens had inserted the tracking implant…heh.

I don’t understand how these symptoms relate to having NDPH. I guess that the majority of people with NDPH have these symptoms or characteristics, even if they are mild.I don’t know what the connection is or if the connection brings us any closer to a cure for New Daily Persistent Headache.

So, my question for you, NDPH friends in misery, is this:

Are you you like me? Are you naturally long, slim, narrow? Do you have piano  fingers that you can bend back in strange ways? Have you wowed friends and family with your freakish flexibility? Is your mouth very small (as in your palate) requiring you to have the palate spreader before braces? Would you walk into walls if someone swiped your 2-inch thick glasses? I swear, I can’t see well enough to brush my teeth without my glasses or contacts.

If so, please let me know. I am feeling very lonely here in the circus sideshow. The bearded lady is about as friendly as she looks…

Now seriously, if you would like more info about this very serious condition or if you suspect that you may have it, please take a look at the National Marfan Foundation.

And my apologies to any who may have been offended by my above freak show comments. I was sincerely feeling like an alien for a time there. I am adjusting and learning that I am not all that odd…well…uh…at least not because of this.

Ooooo! Oooo! Looky here! I figured out how to add a poll. So vote! And tell me more in the comments section – pretty please?

Do you need an iPhone App to track your headache?

You may already know how I feel about tracking my pain levels on a daily basis. I don’t like to do it. I don’t like to focus on the pain because it makes it more difficult to tolerate.
There are some very good reasons to keep track of pain levels as well as how much  medication I’m taking on a regular basis. I cannot commit to tracking my pain levels long-term (let’s not go overboard here), but for the sake of figuring out what medications are most effective I’m willing to try.
Of course, this will keep me from living in the state of denial, which (much like the states of New Mexico or Arizona) I find so incredibly inviting.

I don’t have an iPhone, but I do have a cute little iPod Touch that works just as well with the iHeadache App. Don’t fear BlackBerry users, there is a version for you too. Did you think you were getting out of it so easily?

Description of  iHeadache (from the website):
iHeadache captures real-time information that will aid you and your physician in making an accurate headache diagnosis and optimizing your treatment plan.

iHeadache screen shots

iHeadache will help you track:

• Headache Symptoms
• Acute Headache Medications
• Length of Time Disabled
• Duration of Headache
• MIDAS disability scale
• Sends your reports to your doctor

Clearly, this application could be helpful in determining how well my current treatment is working. I wouldn’t have to depend on my (flawed) memory. I decided to give it a test run.

I also decided to ignore the MIDAS disability scale, because I always feel like I’m “failing” it! I refuse to consider anything about myself “highly disabled” as they so nicely put it. So there.

It does not (at this time) include preventative medication tracking, which I think would be very helpful and I’m hoping they will include in future versions of the application. It could also use a section for tracking triggers – all triggers – food, weather, stress etc. That would make it worth so much more (in my opinion).

Here is a little sample of how the iHeadache iphone app works. It is currently priced at $9.99.

What do you think? Is it worth your time, effort and money?

Happy puppies...

I really want to share some words of encouragement, because I need a little lift and my previous post  (a sad observation) depressed me. Sad puppy topped it off.

So today I will be sharing the inspiring words of others. And happy pups. I hope you enjoy.

Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength. – Unknown

New Daily Persistent Headache is tough. I think it’s an awful diagnosis. Living with it could break you. Putting yourself back together again and living your life through it takes great strength. Pat yourself on the back for trying. Be determined to be stronger than NDPH.

To wish to be well is part of becoming well.
- Seneca

If you are feeling low today, know that you are not alone. If your pain is off the charts and you just don’t want to go on like this, you are not alone.  Your headache may seem overpowering, but you are stronger. If the thought of trying just one more medication makes your stomach turn, you are not alone. Try it anyway.

Hope is like a bird that senses the dawn and carefully starts to sing while it is still dark. Anonymous

On a high pain day (like today), I get discouraged. I start wondering why I even bother trying to find a solution, an end to the pain. It seems even worse today, because the past few weeks have been wonderful for me. My pain has been low enough for me to do whatever I want or need to do. People around me have even noticed that I look better, healthier.

The pain may be back, but now I have a taste of what life would be like without it. My head may hurt now, but I will not let it get me down. My life is waiting for me. And so is yours.

Never give in, never give in, never; never; never; never – in nothing, great or small, large or petty – never give in except to convictions of honor and good sense – Winston Churchill

Massage for chronic headaches

Long before I had any idea what living with chronic headaches was like, I had a desire to help people who suffered with them.  My older brother was diagnosed with cluster headaches before he turned 20 and I had witnessed his excruciating pain on several occasions. I watched how the headaches effected his life. I noticed that he tried not to talk about it, but that it was clear from his appearance when he was back in a headache cycle.

I decided to leave my job in corporate America and train as a massage therapist. I studied a wide variety of methods and am certified in several pain management therapies including  Neuromuscular Therapy (NMT) and Myofascial Release (MFR). My specialty – headache treatments. Yeah, a little ironic.

Using these modalities, I can honestly say that I was able to end a client’s migraine headache in progress on several occasions. I once had a client call me at 6 a.m. on a Sunday morning for treatment. I was able to successfully bring a cluster headache cycle to the end, but was left wondering, was it ending anyway?

Neuromuscular Therapy and Myofascial Release: Can they cure NDPH or your chronic headaches?

There was a time when I would have answered absolutely yes to this question. At this point in my life, after having NDPH for 4 years, I have to answer – maybe. It depends. It’s worth a try. These therapies will very likely help you manage and minimize the pain to some extent.

Neuromuscular therapy targets trigger points in the muscles. It is a deep tissue massage and can be a little painful for some people. The therapist works on an individual muscle or muscle group (completely from muscle origin to insertion), not just the trigger point.

Trigger points in the SCM muscle refer pain (from the x) into the face and head.

What is a trigger point?

• Active trigger point:  actively refers pain either locally or to another location (most trigger points refer pain elsewhere in the body along nerve pathways). An active trigger point in your neck or shoulder can refer pain to your head, jaw or face.
• Latent trigger point : does not actively refer pain (yet), but may refer pain when under pressure or strain.

Here is a video from an Neuromuscular Therapy trainer. This is a general description of a version of NMT that he created.

Myofascial Release appears more general and does not treat trigger points directly. The therapist will use their hands and arms to soften and warm the myofascia, followed by careful stretching. Think of fascia as the plastic wrap that holds everything in place in your body. Myofascia is the fascia of the muscles. This is usually not uncomfortable. (It is my personal favorite as a therapist and a client, because you feel great for a longer period of time then you would after a simple therapeutic massage.

The following  video will show you a little bit about  MyoFascial Release. Unfortunately, the video does not focus on the neck and back, which would be addressed in a headache treatment. Not all therapists will be this thorough in evaluating your pain history and some may combine myofascial release techniques into a more traditional massage.

If you are considering either of these therapies to treat NDPH or chronic headaches, be sure that you find a highly qualified, licensed massage therapist. This is not part of basic massage therapy training. A therapist needs to take additional courses to obtain a certificate in these therapies.

If you have any questions for me regarding Neuromuscular Therapy or Myfascial Release for chronic headaches, please feel free to ask!

I hate to do it. I hate to keep track of my pain levels.  Everyday, I have to evaluate how I felt, how well I was able to function and if I ate something (like a brownie) that triggered more head pain and made everyhting worse. It forces me to focus on the pain when all I want to do is forget about it, distract myself, and go on living. 

Keeping my eye on the pain scale takes away my ability to minimize the pain at the end of the week. I have to look at the chart hanging on the fridge and say “not a low pain week, huh?” If it isn’t there, staring me in the face, I can say instead, “Not such a bad week. ” Luckily, my memory doesn’t serve me too well. It’s only after a week of really intense pain that I may start to say I’ve been having a few bad days.

After all, it could be worse.

It surely has been worse.

So this week I’m not going to mention my pain on a scale of 1-10 to anyone. I am not going to discuss high pain / low pain days. I am simply going to enjoy this week as best I can. I am going to be as productive as possible. I’m going to be enthusiastic. Ooops. Let’s try that again. I’m going to be enthusiastic!!!

I don’t quite feel it yet. I’ll keep working on it.

In the meantime, I am trying out some new meds, for the first time in 3 years. So far, I’m….oh, wait. I just said I wasn’t going to refer to any pain levels. Well, you’ll have to wait for the next post for an update (which will likely be a rant about side effects). Let’s just say I’m having a good week. And my fridge is only home to pictures of my darling daughters and the number for my favorite pizza place.