NDPH Weekly Update – Desert Dreaming

This desert home looks like heaven to me! Its for sale...I

I knew it was raining Tuesday morning before I even opened my eyes. I couldn’t hear the rain, but I could feel the pain that the rain always  triggers. It happened again today.

I need to move to a desert oasis, free from humidity and moisture. Really, I do.

I want to tell you that I had a great week, because I did, aside from the pain. Two high  pain days isn’t that bad (right?). I did find myself huddled on the kitchen floor at one point, but only once, and it was from stomach pain that I suspect was the result of the meds. I stopped the Doxycycline and the pain went with it.

So what was so good about this week? Well, I entered a contest to be The Good  Mood Blogger (please take a moment to vote for me ). My friends and family have pulled together for me, bringing in close to 400 votes at last check! I need to stay in the top 20 of applicants to make it to the final round. At that point, I will have to make a video of myself and submit a resume and writing sample.

Truthfully, it is incredibly difficult to be in a good mood when dealing with constant pain. I’m still here. I’m not giving up and I’m smiling as I write this, even though I feel like someone is hitting me in the head with a hammer at the moment.

It is amazing to me, what can be tolerated.

All the world is full of suffering. It is also full of overcoming. – Helen Keller

I do have a secret. it’s one you have heard before. Gratitude. I know it may be hard to find something to be thankful for when you have NDPH. I KNOW. Look harder. Look more carefully. The more you can be thankful for, the better you will feel emotionally. It will strengthen your resolve to go on and to keep fighting your battle.

Desert home, Sedona AZ...a little out of my price range...

Desert home, Sedona AZ...

So this week was a good week. I will deal with the rain and humidity. Just dreaming of my desert oasis will have to be enough for now.

I am thankful for all of the incredible support I’ve received over the past days. It means more than anyone realizes. I am so thankful to my readers as well. Thank you for reading, commenting and for all the emails. You have made this little site a success by visiting.

I am here for you, to support your in your struggle, whenever you need me.

All you have to do is ask. 🙂

Thai Yoga Massage for Daily Headache

Can Thai yoga massage relieve the pain of your chronic headaches or New Daily Persistent Headache? The following video highlights one woman’s experience and relief from chronic daily migraines. She experienced a 95% improvement and had suffered from daily headaches for 15 years.

To learn more about the practitioner featured in the video, see thaivinyasa.

See my previous post for more information about other forms of massage therapy for NDPH.

Life with NDPH Weekly Update

Cute little Min Pin all dressed up.

Cute little Min Pin all dressed up.

Since I refuse to keep a daily pain diary (daily bringin’ me down diary) I’ve decided that I will at least take a look at how I’m feeling on a weekly basis.
Since I also suffer from mommy brain (an inability to remember random and not so random life events) my weekly NDPH update will hopefully not be too depressing.

Basically, if I don’t remember being huddled up in the fetal position on the kitchen floor in pain, it was a good week.

So this was a good week. I think. Well, wait. Monday was really awful, now that I think about it. It was the last day of a bad 3 day high pain spurt.

Today, I’m doing well again. Headache is around a 2/10.

So, the big question is: Is the Doxycycline / Singulair working for me? I’m not sure yet. It hasn’t been a full two months, but I have adjusted to being on it and no longer have any bothersome side effects, as long as I only take it once a day. Twice a day and it really starts to give me trouble.

I’m such a sensitive girl.

I’m actually feeling well enough to write again, at a more consistent pace. So for me, if I can manage my life, kids, house and still find time to write a little (preferably a lot) then I would say this treatment is more of a success then I expected.

I just want my life back.

This little min pin pup wants to come live with me. I just know it.

This little min pin pup wants to live with me. I just know it.

Here’s the downside. When my pain gets really high, like on Monday, I don’t handle it as well as I have in the past. It’s as if being pain free has actually weakened my ability to cope with the pain physically and emotionally.

I get ticked off, to be honest. As in  WTF is this pain doing here. It’s all about fear. I’m afraid I won’t have those good days again, that the meds aren’t working at all, that I’m going to feel horrible every day for the rest of my life.

I snap out of it as soon as the pain dies down. I rarely felt that way in the past though. I was always able to accept and move on a little bit better.

A side note: Since I posted cute puppy pictures in a couple of previous posts, I thought I would share pics of  a breed I simply adore(but would not dress up): the miniature pinscher (or min pin). I had to stop myself from adopting one this week. I already have a very complete animal family here at my house, including a 100lb+ Labrador sweetie…but I think she might be lonely.

Never Give Up

From time to time I am able to conjure up some words that sound, well, almost wise. Some days I can inspire. Today is not one of those days. My head hurts too much.

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 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!

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

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…

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.

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.

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.