September 16, 2009

Massage Therapy for Chronic Headaches

Massage for chronic headaches

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.

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!

September 16, 2009

A Sad Observation

Sad observations on the reality of NDPH

I started this blog less than a month ago and I’m amazed at the response that I have received so far. I wasn’t sure if there was a need for it, aside from helping me sort out all the information being thrown at me.

I’ve been keeping an eye on my blog statistics and the search terms that are bringing people to this site. I’m finding it a little heartbreaking, to be honest. I know that the answers they are finding are disappointing. I hate to be the bearer of bad news.

Here are some of the terms and questions that people are typing into the search engines and landing on my blog (and a brief explanation):

  • Cure for NDPH – There is no cure at this time. There is treatment and there is hope.
  • NDPH doctor – I’ve mentioned my new neurologist who specializes in NDPH. Dr. Rozen is looking for answers to the mystery of New Daily Persistent Headache and is known for his research on NDPH.
  • will NDPH go away / how long does NDPH last? This one was the hardest for me to see, because the answer is not encouraging. According to my doctor, some cases  resolve in a year (they don’t know why) and others can go on and on indefinitely. 5 years, 10 years, I read of a woman that had it for 30 years.

When I was initially diagnosed, I feel that I was misled by my doctor. His was very  optimistic. He didn’t mention to me that most people with NDPH are resistant to pain medication. He seemed surprised when the migraine standards (like Imitrex) didn’t work for me. It wasn’t until I found the MD Junction support group that I discovered that I am very typical.  Many people  have tried 50 or 100 different medications with little pain relief.

When you come to the end of your rope, tie a knot and hang on.

I’m not saying it’s a hopeless situation. I think that we (myself included) need to encourage each other to keep trying new things. Many people do find a solution. Many people do find a medication that helps them live a close to normal life.

We can not give up.

Things will happen in your life that you can’t stop, but that’s no reason to shut out the world. There’s a purpose for the good and for the bad.”
Crazy Pete

September 14, 2009

Will I Ever Learn?

A headache again...

A headache again...

Some people never learn. That is how I ended my last post. I was referring to myself, of course. And I was absolutely right. Less than 6 hours after posting that I was feeling better, I had a reaction to the medication and was quite ill through the night.

When will I learn to keep my mouth shut? This happens every time I claim to be feeling better. I even knocked on wood.

This is silly, really, because the treatment I am on is the least likely to have negative side effects, when compared to the other drugs that are typically prescribed for NDPH. No one explained that to my body. It seems that I took the doxycyline to close to bedtime, perhaps and I’m supposed to wait a full 30 minutes before lying down.

I know that I am sensitive to medications, except for pain killers. Pain killers only seem to make me not care about the pain. Yet, for the most part, I still feel the pain.

So anyway, I still have a heartburn like pain 4 days later, particularly when I drink coffee or eat anything acidic.  I guess I will be eating bland food for a few days until this passes.

Same old story...

Same old story...

Darn. I hate bland food. I was planning on making my favorite chili today, now that the weather is getting cooler. There is nothing I like better on a cool fall day, except maybe a cup of coffee. But that hurts too.

As far as my headache, it has been slowly getting worse since I stopped taking the medication. Very slowly. I am just about ready to try out another new pain med. I have to admit, I’m a little nervous about the possible side effects. I’m just not up for any surprises this morning.

I spoke with Dr. Rozen’ s office this morning, and he is recommending that I only take the  Doxycycline in the morning, with yogurt, to minimize the heartburn factor.

Makes sense. We’ll see how it goes…

September 10, 2009

Doxycycline and Singulair for NDPH

It seems like a strange combination of medications to take to attempt to get rid of New Daily Persistent Headache, I know. I’m trying it out  now, at the recommendation of my new neurologist. If  you would like to read up on some of the research that supports this treatment, take a look at Elevation of CSF Tumor Necrosis Factor ± Levels in New Daily Persistent Headache.

I’m warning you, it isn’t crystal clear why this would work  just by reading the research. Well, maybe if you are a doctor it would make sense. The author (Dr. Rozen) explained it all to me at length and I fully understood it in the moment. It was fascinating really, and I wish I could explain it back to you as well. I can’t! If I had on my reporters hat, I would have taken notes. Honestly, as I was sitting there listening, it was all about me.

When I mentioned the magic word cure to my doctor with hopeful eyes, he smiled. He ’s not using that word. It may not be a cure, and the science behind it may not be black and white or clear as day to someone like me, but there is good reason to give it a shot.

Ok, this is my oversimplified interpretation: Doxycyline is an antibiotic. NDPH is often triggered initially by a virus or an infection  and there is some suspicion that this is more of an immune system issue. So, treating it with Doxy and Singulair targets the inflammation in a different way then other migraine specific medications.

I’m on day 8 of this combo. It takes at least 2 months to know if it is helping or not. So far, I’m annoyed at the nausea (I’m easily annoyed) but my head pain has been under a 5 (on a scale from 1-10) for the past 5 days. I know, I said I wasn’t going to speak of those nasty pain scales this week. But how else can I explain? I haven’t had the need to take the abortive med my doc gave me to try out in 7 days.

I’m happy. I’m encouraged. Of course, it could be the fact that the weather changed that is making my head feel better. It could be that my house is much quieter now that the kids have gone back to school. It could be that I really believe it should work, therefore it is.  It could be a whole host of other things and it has only been a week – not nearly enough time to judge if it is working.

But I am okay. Today, I’m okay. So does it really matter why? I take the good days and I celebrate. It is 9:35 A.M. as I write this. Normally by this time the pain would be settling in for the day.  I’ve noticed over the past week that my pain (what there is of it) has been moving. Now, it always moves, but it usually has a focus point over my left eye and wanders around the rest of my head.  I haven’t had pain over my left eye in days.  That is so cool.

Actually, I was afraid to share all this. Knocking on wood over here! Last time I had a significant break in the pain (an entire two weeks over the winter) it came back as soon as I started telling people. Figures, right? But here I am putting it in writing that I am feeling better.

Some people just don’t learn.

September 8, 2009

The Pain Scale

Another scale to avoid!If you are living with chronic pain, you’ve surely been asked to rate your pain levels or perhaps keep a daily log to track the ups and downs. On a scale of 1-10, what’s your pain level today?

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.

September 1, 2009

The Right Neurologist

Maybe. Maybe this doctor can help me.

Tomorrow I will be heading out bright and early for a little road trip to Wilkes-Barre, PA. Shall I stop off in Scranton for a photo opp?

Welcome sign from The Office has been moved to a mall for photo opps!

Welcome sign from "The Office" has been moved to a mall for photo opps!

There are few doctors (that I have discovered) who list NDPH at the top of their list of specialties. The doctor I am lucky enough to be seeing tomorrow, Dr. Todd Rozen at Geisinger Health is actually the first that I have found. I’m sure there are more. There must be. I’m just not sure where they are hiding. It may be easy to find a headache specialist who knows what NDPH is, but Dr. Rozen sounds like “the man” when it comes to NDPH. I’ve read (from more than a dozen) of his previous / current patients that he’s a terrific doctor – and their first choice in neurologists. The one complaint? He isn’t close to where they live.  For me, he’s close enough. I would walk to Pennsylvania, seriously, if I thought my cure was waiting there for me.

Am I too hopeful? Not at all. I don’t think doctors are gods of any kind. In fact, I have almost no faith in modern medicine at all these days, at least when it comes to treating my headache. I’m just not ready to give up yet.

August 29, 2009

Antibiotics + Asthma Meds for NDPH

I had not heard about combining antibiotics and asthma meds to treat NDPH patients until I posted this video a couple of days ago. Christine commented that she had never heard of it before either, so I decided to do a little research.

A quick look at MDJunction’s NDPH Support Group explained it. Now, if I had been keeping up on the developments in the world of NDPH instead of hiding out an denying that I have it STILL, I would have known about this 5 months ago. But, this does feel like it could work or me. An I mean feelas in a gut reaction to the antibiotic idea. I know that the times I have been on antibiotics over the past 4 years, my headaches have lessened, but because I was sick with something else, I didn’t notice until after the fact and figured I was just lucky to not have bronchitis and a headache.

Anyway, instinct is saying try this….try this now!So I am off in search of a doctor who will give me this combo. Many people with NDPH get it following a virus, so I guess this sort of makes sense. I will keep researching and attempting to understand how this works, and will keep you posted.

Why it works for some ( and not for others) I don’t quite understand – but I am in good company on that one. Is it worth trying? In my opinion, absolutely. The side effects are minimal – if any, which is a big plus for me. There are several medications that I refuse to try because the side effects are severe (in my opinion) and not worth the risk.

August 27, 2009

Parenting, Writing and Loving with Chronic Pain

headachegirlThis past Sunday morning I awoke with a clear mind. My head only hurt a little and I started thinking. More than two years ago I began writing a book. And then I stopped. I was missing direction. But on this clear morning, I had it. The ideas were flowing and I could finally see the big picture of what the book would be about, specifically, how I could structure it, what, exactly it would cover. I would even laugh out loud from time to time thinking about it. I could feel how funny it would be.

And then my head pain escalated. I was no longer able to think clearly, take notes or write down anymore ideas. I crashed creatively. I crashed emotionally.

Now it’s Thursday, and I haven’t had a break from the pain this week. It’s the last week of summer, before two of my three girls head back to school. The weather is perfect. I had planned a trip to the zoo, the beach and was determined to have fun with them. That didn’t happen either. They are understanding, but I am not. They are still enjoying themselves, but I feel guilty.

I think guilt is something I  have not given a moments thought to in the past 4 years of dealing with NDPH. I have it. I’m toting it around in a bag on my back. I just never noticed how it was weighing me down. I feel responsible on some levels, for my own suffering and for the effect it has had on my parenting, my writing and my life in general. I certainly didn’t ask for this, but I often think I must have done something to cause it-or could do something to stop it – maybe if I ran more or ate only raw vegetables or stopped drinking coffee…these are all legitimate things I could do – and have tried- to make myself feel better. Maybe I didn’t try hard enough? Maybe the fact that I have successfully avoided the doctor for two years (not a real victory) because I was sure there was nothing that could be done. For many with NDPH, nothing really can be done. So I am not that far off here. 

I think it is time for me to accept that this just happened. For whatever reason, I have NDPH. Maybe it’s crappy Karma coming back to bite me. Maybe it’s because I was exposed to something toxic and I didn’t turn into super-spider like hero. But it happened. And I am here now, dealing with the mediocrity of my life because of it.

I am not the mother I was before NDPH. This is what upsets me the most.

So maybe I am not an outstanding mom in the way that I don’t do super fun things with my girls. And maybe they don’t have enough time in the great outdoors because the sun and humidity drive me crazy. Maybe they watch too much TV and don’t do enough crafty little things that make my head spin, in addition to the normal pain. But I love them. They know that. At the end of the day I think they know that I am doing my best. The relationship we have, the connection I strive to maintian, is more important than all the things we could be doing.

So, am I responsible for my NDPH? No. It isn’t my fault. And if it is, well, I am choosing to forgive myself. It is my responsibility to not give up hope, to keep seeking a cure and to stay optimistic. It is my responsibility to be sure that I tell my girls I love them everyday and show them, even though I have a headache, that I can still be a great mom to them.

And sometimes, some days, they will see the old me, the happy, fun mom who likes to dance around the kitchen with them and bake cookies in every shape and size and swing high on the swing and play with dolls and read them stories. On some days, they will have her.

Sometimes I will have myself back too. I will get back to working on the book on my low pain days, when they come.

That’s just the way things go. But sometimes, they go the other way too

Spoken by Alabama in (one of my favorite movies)True Romance.

It’s time for things to go the other way.

August 24, 2009

A Short Explanation of New Daily Persistent Heachache

People ask me all the time what NDPH is and I try to tell them in a sentence or less. It doesn’t really clarify it for them. I seem to sugar coat things and downplay the reality of it as much as possible.  I can’t stand hearing the phrase “oh, you poor thing.” Drives me crazy, really.  Yet, it is important for family and close friends to fully understand what we are going though if they are going to be supportive in this struggle.

The following video explains exactly what New Daily Persistent Headache is and how it impacts a persons life.  The woman in the video finds a drug combo that works for her (after two years), but they do go on to say that some people suffer for decades with little relief.

August 24, 2009

Plastic Surgery for Migraine Relief?

How far would you go to get rid of your headache pain? Most of us with NDPH would try just about anything to make the pain go away, but I think this maybe a little over the top for me. That’s just me. Ask me again, maybe in 15 / 20  years when I will actually want a face lift!

I originally saw this as a news story on CBS / NY this past weekend. Here is a video that explains in further detail, what this surgery entails. Please take note of the fact that around 50% of the placebo group also experienced a decrease in pain.

Obviously, more research needs to be done to prove that this is a possible cure for migraines. I don’t really see it as a cure for me, because my NDPH pain is not always in the exact same spot behind the eye or in my forehead. My pain wanders…

What’s your opinion? Would you try this (even if you didn’t want the facelift to go along with it)?