So, what about the book?

vintage books

As my long time readers know, I’ve been working on a book about NDPH for a few years now. And by “working” I mostly meaning “sitting” on it, waiting for the time and energy that only ever arrives in spurts. At this moment, I have almost completed a rough (very rough) draft of the book. I have a few things that I need to work out as far as the organization and there are a few areas that I would like to cover that I have yet to address.

The working title for the book is  Living with NDPH: My Story and Yours. It begins with my story and goes on to share the stories that I have collected from readers here over the past 3 years. I’m including a section on Lyme Disease, alternative treatments that have “cured” or significantly helped people and an appendix containing a list of doctors recommended by readers here. I hope to include a few additional resources.

Now, I have a question for you! What do you want to see in the book? What would help you most (aside from a cure)?

I am still accepting stories to be included. I have many, many that recount treatments and medication choices. What I would really love to see more of at this point is the other side  – how have you dealt with this illness emotionally? How has it impacted your mental health? What helps you get through the day? What do you wish the people around you would do to support you? Are you able to maintain your life in anyway (work, family, social).  I am also looking for first hand accounts from teens suffering with NDPH and their parents. These stories don’t have to be long and involved or even complete. If you have something you want to say, I can find a way to include it!

Please leave your suggestions or stories in the comments section or email them directly to me at alandisman (at) gmail (dot) com.

I haven’t set a publication date yet, but I hope to soon. As always, working revolves around my pain levels and the current needs of my three daughters. I’ll keep you updated! Thank you all for your continued interest and support.

Subtype of NDPH – Thunderclap Onset

I have spent the past two days sifting through thousands of comments here waiting for approval. If you are a subscriber of the blog or comment subscriber, I owe you an apology! All of the approved comments many have hit your email over the past two days…and I know there were many. So I am sorry that I clogged your inboxes, but I also know that some of the comments contained important information.

I don’t have a good excuse as to why I waited so long to sift through the spam comments and approve the good stuff.  Will you accept the excuse that I had a headache? 🙂

Here is a comment that I thought was worth sharing with everyone.

“I’ve had NDPH for 5 1/2 years now – currently in the middle of treatment for Lyme. I wanted to post this recent article published by Dr. Todd Rozen. I think that, like myself, so many NDPHers’ headache began with this “thunderclap” type headache. I’d be interested in knowing if anyone has tried this calcium-channel blocker for the headache? If anyone has, or does try it and gets relief, please come back to post. As Bob H. has mentioned, it would be great to get a study going to discuss commonalities, treatments, etc. Several NDPHers, again like me, at some point during the headache course, have tested positive for Lyme and/or reported some sort of “strange rash.” I wonder how many with NDPH have been tested through a specialty lab for Lyme or other tic-borne illnesses? Here is the link to Dr. Rozen’s article:

Warm regards,

Laura P.”

Here is the link to the article by Dr. Rozen that discusses a treatment for NDPH with thunderclap onset. If you experienced a thunderclap onset of your headache, please take the time to go through this article:  The Journal of Headache and Pain

As you probably know, I tested positive for Lyme and several coinfections about 4 years ago, 6 years after the onset of the headache. I was tested multiple times when I first had the headache, but the results were always negative. I mentioned to many of my neurologists that I had a strange rash and muscle pain in my legs, but they all dismissed it as unrelated. I don’t know for sure that it was Lyme all along, but I do know that the Lyme treatment gets rid of the head pain, at least for a while. I can typically go about 6-8 months without medication before the pain drives me back to treatment.

As for the thunderclap onset, I’m not entirely sure. I always described that first moment of onset as pain falling on me. However, it did come on all at once and it was the worst headache I ever experienced and that high level of pain (a 9 or 10) lasted for at least five days straight before lowering a little to maybe a 7 or 8 on the pain scale.

I am so thankful that I am not there anymore. I may not be where I would like to be, but at least I’m not there, in such desperate pain and shaking with fear. I guess I  am accepting it all, to a degree.

Living with Chronic Pain

Over the past 10 years, I’ve spent a lot of time screaming over what I’ve lost. It’s only recently that I’ve begun to move on from the mourning over the life I had.

Let’s try to put together something that’s good for ourselves, however small.

If you have tried the treatment presented in the study, please let us all know how it went below in the comments section. I promise to approve it right away!

Rowan’s Story

It’s rare to come across a success story when it comes to the treatment of NDPH. I found Rowan’s story today in the comment section of one of the posts here on the blog and wanted to share. I hope that this can help someone out there find relief from their pain.

“My son has recovered from NDPH and he wants his treatment documented for others. Rowan woke up on Sept. 10, 2012, age 13, with an excruciating headache which was continuous until Feb. 10, 2014.

He had done Topomax, Maxalt and other migraine medicines with no avail. Botox and DHE infusions were also tried. He was put on a low dose of Protriptyline which lessened the headaches but he was still unable to attend school and ordinary social functions. In December of 2013 we went to a new neurologist, Dr. Khoury in Dallas, TX. Rowan’s meds were bumped up to high doses of Protriptyline and high doses of Cambia. Both of these have an anti-inflammatory effect and after 6 weeks of that regimen, Rowan’s headache stopped and has not returned in the last 5 weeks.

My heart goes out all of the NDPH sufferers and please never give up hope. Regards Dr. White (Rowan’s mom)”

If you have tried these medications, please share your experience (pros and cons!) in the comment section.

Wishing you a low pain day,



An Honest Look at NDPH and Lyme

The game of let’s pretend started early.

Back when I was first diagnosed with NDPH (8.5 years ago), my doctor was so lighthearted and optimistic that I walked out of his office thinking I was just a few pills away from relief. Pure fantasy.

Six years later, I was diagnosed with Lyme, and all I received was a phone call from the office nurse letting me know that I needed to pick up my prescription and take my meds for the next few weeks and all would be just fine. Science fiction.

honest about lyme

Both doctors (and many others along the way) have been dishonest with me. They left out some very important information about both diagnoses. It wasn’t until much later that a neurologist told me the truth: sometimes NDPH never goes away. And sometimes it does. I wasn’t until I did my own research that I discovered that when Lyme isn’t treated immediately and aggressively that a person may have to continue fighting some symptoms forever.

I’ve been quiet  here for a while now. I haven’t been sharing my journey, mostly because I haven’t had any desire whatsoever to take a honest look at how I’m feeling.

It’s been 3 years since my Lyme diagnosis. At this moment, my head hurts like hell. I can’t keep track of how bad I’ve been feeling  because my brain is cloudy and forgetful all the time.  I’m exhausted. And if I were to let myself go there (which I won’t) I could be absolutely hopeless.

I have no idea what to do next. I was better for a time, but slowly it all came back.

I know that I am lucky. The simple fact that I’ve had a break from the pain at all makes me lucky. I know many or most of you have not had that much needed break, but having it, getting your life back only to have it slowly slip away again…

It’s hard too.

I have nothing to say about treatment options. I have no idea what I will do next.

I’m not giving up. I’m trying to be optimistic. But I also have to stop pretending that I’m just fine, even if the only place I can admit that I am a total mess is here, on the blog.

Time and pain have both taught me to keep quiet and pretend that all is well. To the rest of the world, I’m going about my business. I’m getting ready for the holidays, I’m buying Christmas presents for my girls. I get up in the morning and push through the day and no one is really the wiser.

I don’t want to be that person who can’t manage work or social events because of pain (but I am). I don’t want people to know how hard it is. I don’t want to deal with their looks of sympathy before they turn away.

So now you know.

I’m still struggling to keep the pain from impacting my life. And it feels like I’m loosing the battle. I wonder, if I stop pretending that I’m okay, will things get worse?

Do you pretend that NDPH  is just a bump in the road? A minor inconvenience? Or are you totally honest with yourself and others?

What if your headache never went away?

Helping people in your life understand what you are experiencing with NDPH can be difficult and frustrating. Is there a way to help them truly empathize?

A contributor to the site Empathize This came up with a comic strip about New Daily Persistent Headache that does a great job of illustrating what life is like with a constant, relentless headache.

They have given me permission to share it with you here.

ndph comicI think the ending really nails it. If I could get better I would. It addresses an issue that comes up for some of us – the implication that we are lazy, exaggerating or seeking attention.

To read the short story that goes with it, check out Empathize This.

What do you think? Maybe it needs to printed out in a brochure form so we can hand it out to the random people who suggest we try Imitrex because it works for their niece’s migraines or drink more water because it helps their brother with his tension headaches!

Oh, would that be rude?

Maybe we could just smile and say “it’s not a migraine, but thanks for the suggestion” and hand them a copy?

NDPH is a Whole-Life Crisis

There is always hope. New Daily Persistent Headache can be overcome. I am proof.

Last week, I attended a belly dance class. My body hurt through most of it, the residue of fighting Lyme and NDPH still sticking to me. At some point, in the midst of the loud music and scarves swirling, I felt something I have not felt in years.

I felt free.

Dancing with scarves at Sound Wellness, Newtown, Connecticut

Dancing with scarves at Sound Wellness, Newtown, Connecticut

I had a glimpse of a gift forgotten long ago.  Wholeness. Do you remember feeling whole? I miss it. I didn’t think it was possible. I had stopped looking for it altogether.

NDPH is a Whole Life Crisis

The truth is (no matter how much I want to deny it), NDPH / Lyme  broke me in multiple ways. It had an impact on every single part of my life over the past 8 years- my marriage, my kids, my relationships with friends, my work…you know what I mean. I bet it’s happened to you too. Friends slip away, connections weaken all around as we retreat into our own little world of suffering.

The disconnection adds to the pain. People don’t understand. They don’t even try to understand. More isolation for us. Depression. Anxiety. Anger follows.

Why? Why is this happening? Will it ever end? I just want to open my eyes in the morning and not feel pain. 

I lost myself in the pain, anger and frustration of dealing with a disease that is relentless. I lost the person I was. Have you?

It turns out, she’s still in there, waiting for me to remember. Waiting for me to dig her out from under the landfill of garbage stuffed down on top of her over the past 8 years.

Wholeness is calling. And I may not have to be totally healed physically to find it.

My headache is mostly gone these days. I don’t know the specifics of how or why from a scientific point of view. I know that the treatment for Lyme (massive antibiotics) knocked it down and then down some more. I am not pain free, but I’m good-ish. Good enough.

It’s been an awful ride.

And I owe many of you an apology. If you emailed me in the past six months or so and didn’t receive a reply, I am so sorry. I have your story. I read your email. It means so much to me that you reached out. But sometimes, when I’m fighting pain on some level, I am unable to reply in a way that would be encouraging. So I don’t respond.

I don’t want to suggest we find a really high bridge and jump together.  Yes, I have moments like that. So I hesitate to say anything at all.

Often, your words keep me going. Thank you.

I want to assure you that I am not abandoning you now that I am feeling good-ish. I think I finally have it in me to finish the book, redesign this site and (hopefully) add a support forum. I know that you need it.

If you would like to send me your story, the new deadline is July 31. I hope to get the book (in ebook format) up and ready by September 15. I will also be taking stories from here on the site and trying to organize the information provided here.

My final thought is the same as my first. There is always hope. When my headache began, I had a 6 year-old and 16 month-old to care for daily. I had to go on. I had to get out of bed every morning and give them my best. My best often sucked. But I tried. It’s what kept me going. Now, I have a teen, a 9 year-old and a 6 year-old. I have failed them often, retreating into my pain, struggling to simply survive the days, but I went on because I had no choice.

I gave up all the things that I loved and believed in – the things that made me who I am – or who I was. I left my work as a massage therapist. I specialized in chronic pain management and migraine treatment. Ironic? It couldn’t help me. And if I couldn’t find healing, how could I possibly help others? I eventually stopped riding horses, my favorite hobby. The pain was too much. I stopped dancing around the kitchen, finding joy in the movement, in the moment.

I stopped living and settled for surviving.

If you don’t have a reason to push through the pain, find one. It doesn’t have to be big. Maybe your goal for the day can be to find one thing that will bring you happiness. Maybe there is something you love to do that you left behind. Go do it. Just try. You may not do it well and that’s okay. The point is to keep trying.

Act on your hope.

Wishing you a good-ish day.



NDPH – Kevin’s Story

Man with HeadacheAll of our stories are the same, in many respects. Most of us remember the day and time that our headache began. Many of us have been suffering for years with no relief.

Our lives have been changed. NDPH has cost us all something. A hobby? A job? A spouse who couldn’t stand by and support us through the  pain?

And not all of those suffering with this have a dramatic story to share. Many just suffer in silence and push through to the next day. And the next day after that.

The following is the first in a series of stories that I will be sharing here on the blog and ultimately in my book about NDPH.


Kevin’s Story

Good evening from the outskirts of London.
I first became aware of continuous headaches at the beginning of 2011 – and put it down to at the time, lots of complex eye surgery (retinal detachments cataracts etc). After spending thousands of GBP on spectacles with tints, prisms etc a consultant at London’s Morefields Eye Hospital suggested I seek other causes for the headaches.
After an appointment with a neurologist the specialist pretty soon diagnosed NPDH.
My version of this gives me orbital pain – behind both eyes and is largely with me all of the time day and night.
My neurologist has tried the usual – spinal scans, brain scans etc etc and introduced me over the years to a catalogue of drugs – Mirtazipine, Topamax and more recently Nortriptyline (only managed to get up to 20mgs – lethargy effects were too great).
During the last few weeks i have started to develop dizzy spells and light headedness that were not part of the NPDH over the years – and i have taken a decision to try to stop the anti depressants like one of your other contributors – dizzy spells etc are really bad but i fully expected to go through this.
Can I ask if any of your other contributors have also had a gallbladder infected with gallstones? – I have this currently and are awaiting a decision to remove my gallbladder – but us NPDH sufferers are always trying to find a link to their headaches – however small that might be.
I design washroom partitions as my day job and came up with the solution for London’s 2012 Olympic stadium – I thankfully, have very understanding colleagues who allow me to put increased effort into the good days and essentially write off the really bad days.
For all of your contributors that are in relationships – naturally it is our wives, husbands, girlfriends, boyfriends etc who have to suffer just as much as us and let’s hope that the medical profession – somewhere down the line can make some breakthroughs with this terrible disease.


Do you have any thoughts or recommendations to share with Kevin? Have you had gallbladder issues related to NDPH or a medication you took to treat it? Please share in the comments!

Update: NDPH Stories and Book

I promised a book about NDPH, I know. I have 345,329 excuses. I won’t bore you with them. I’ve been collecting stories from readers around the world for ages now and in the process of putting it all together, I got stuck.

I had a Lyme relapse. NDPH came back as if it had never left. Life happened all around me. I started putting a ton of my writing energy into my parenting blog, where sometimes I feel like I am living a double life because I won’t allow myself to talk about my pain there.

So my half-finished project is still on the back burner while I try to get myself together.

In the meantime, I would like to start posting some of the stories I have received here on the blog, with the hopes that these stories will help you feel less alone in this battle. I know they have done that for me.

Thank you for all of your stories. Thank you for being there for each other in the comments section when I have been unable to respond. Your emails inspire me and sometimes they break my heart. Keep them coming.

Look for the first story in the next day or two. And watch for a little site makeover within the next week.


Surgery for NDPH

Is surgery an option you are considering to treat your NDPH?

Over the past year, there has been an in depth discussion going on here about a controversial surgery done by only one doctor in the world, Dr. Shevel in South Africa.

I have decided to move the discussion here, so that everyone can get the facts and chime in with their opinions. I have only edited out things that were not directly relevant in an effort to make the information easily accessible. You can find the entire discussion on the What is NDPH comment thread, but sifting through everything will take time.

The conversation began with a few readers looking for first hand information.

Maria responded:

My boyfriend has been going to Dr Shevel for the last 3 months for treatment. Unfortunately, we have tried everything and nothing has worked. On Monday he will be going for the operation which will be performed by Dr. Shevel. This is our last resort so fingers crossed that it works.

A week later Maria writes:

Anthony does suffer from NDPH. He went for his operation last week.  When I drove him home Monday afternoon he told me how the constant pressure that he has felt for years in his head was gone. I can also report that for the last week he has not had a headache, at all.

Dr. Shevel never gave us any guarantee that it would work, but as so many people are aware, when you are that desperate you will do anything to become a normal person again, even paying for the operation out of our own pockets due to the fact that our “Medical Aid/Insurance” refused to pay. From my perspective I have never come across a more kind and dedicated doctor.
Anthony had his stitches removed and the cuts seem to be healing nicely. We are keeping our fingers crossed that the pain never comes back.

Cal asked the following questions:

1. Had Anthony ever responded to migraine medication (e.g. triptans or DHE infusion)? These medications are vasoconstrictors, so I think a good response to them helps Dr Shevel in his diagnosis. I have had no response to any treatment.
2. Was Anthony’s NDPH of the ‘standard’ sort: sudden onset, unremitting, bilateral, tenderness over certain parts of the head, bilateral, without migraine features (i.e. auras, photophobia, etc)?
3. Did Dr Shevel diagnose a vascular or muscular component to Anthony’s headache? As I understand it, his surgery involves closing off certain blood vessels in the head/scalp. If the blood vessels are not the problem, he turns to muscles.
4. What tests were done in advance of the surgery and what conclusions were drawn from them?
5. How familiar was Dr Shevel with NDPH? It is, as I’m sure you know, an unusual and rare headache disorder.

Melissa asked:

I am wondering what sort of side effects there might be, and what is the safety factor of closing off blood vessels. It seems to me like you need your blood to keep flowing through all the vessels…

Maria’s response:

1. Anthony has not responded well to any migraine medication for many years. He has tried everything imaginable without success. Dr Shevel did recommend things like Maxalt, Cafergot and Tramecet.
2. Anthony’s headaches/migraines have always been very strange to me. He does not suffer from vomiting, photophobia or any other symptoms that I have when I get a migraine. He explains his headaches as a constant, dull, pressure that is sometimes manageable and lately have been crippling. This has affected his work (been off work 2 – 3 days a week for the last 6 months), he takes a great deal of medication to try and “knock himself out” so that he does not have to deal with anything or anyone, especially the constant pain in his head.

3. Dr Shevel diagnosed both vascular and muscular components. So they ligated the arteries where they cross the capsule of the temporomandibular joints, then they ligated the occipital arteries in the occipital area, the frontal arteries in the temporal area and the posterior auricular arteries behind the pinna of the ear. They then also cauterized one of the muscles on the top of his head that has a trigger point. Further muscles may need to be cauterized but that all depends on how Anthony is feeling in a few weeks.
4. No particular tests were done prior to the surgery, although you have to remember that this was a last resort for us as Anthony tried everything else that the Headache Clinic had to offer. Prior to the operation they do blood tests and a CT Scan.
5. How familiar the doctor is with NDPH I think you would need to ask him.

In response to Melissa’s question – Anthony spent 5 days at home after the operation. He has some muscular pain (which is normal after an op), some discomfort sleeping, as he has two cuts on either side of his head and two at the back. He takes anti inflammatories and that’s about it. Like he says, everything else he can live with for two reasons, firstly the headaches are gone and secondly the current side effects he is dealing with he knows will go away eventually. For a better understanding of what Dr Shevel does I would suggest you go to the Headache Clinic’s web site as this will explain everything.

Maria, six weeks later:

An update on Anthony is that it has been 6 weeks today since he had his operation. I am glad to report that he has not had a single headache for 6 weeks. He is however going back to the Headache Clinic on Thursday this week for a “follow-up” operation where they will cauterized some more muscles, as he still has the muscular pain. Hopefully after that he will be 100%.

Maria at 6 months:

Just to let you all know, it has now been almost 6 months since Anthony had his operation at the Headache Clinic, and still no headaches :-)

A reader asked about the cost of the surgery…

Maria responded:

The surgery is not that expensive, the biggest issue for you would be that the Headache Clinic only do the operation as a last resort, which means there are other things they like to try out before they recommend the surgery. Your best option will be to contact the Clinic directly .

Cal replied with specifics:

For international patients, the consultation and (if advised) surgery at Dr Shevel’s clinic costs around $20,000.  Patients would then have to add the costs of travel to South Africa, hotels, etc.

As I understand it, Dr Shevel only recommends surgery if he diagnoses an arterial component to a patient’s headache. He does so by seeing whether the headache (his main focus is migraine) stops when pressure is placed (using a tight, hat-type device) on various arteries on the outside of the head. This does not sound like a particularly promising diagnostic tool for a headache type like NDPH (which is generally a constant, non-pulsating ache or tightness of varying severity), but there appears to have been success in the above case. Dr Shevel’s other main approach is to fit a specially designed dental splint. I can’t imagine international patients traveling to South Africa for that.  I have not come across anyone with NDPH who has responded to them. So, the key questions are: (a) Does your headache have a strong arterial component? If so, it may have responded to triptans or to other drugs (IV- DHE) that have a vasoconstrictive effect (again, rare for NDPH sufferers). (b) Will Dr Shevel be able to accurately diagnose such through simple compression of arteries on the scalp?(c) Will ligating arteries stop the headache?

Dr Shevel is extraordinarily helpful in advising patients and clearly believes that he has come upon a real solution for some migraine sufferers. NDPH is different from migraine, however. It is continuous rather than episodic and it is often very difficult to tell whether any drug or treatment is making a difference. Further, the issue of vasodilation/vasoconstriction is even more complicated in NDPH than in migraine. Most NDPH sufferers don’t appear to have a headache that is ‘vascular’.

It would be great if Dr Shevel could advise upon, and a doctor in the US/Europe provide, the test he performs to determine if a headache has vascular components. A positive diagnosis made int he US or Europe might encourage some international patients to travel to South Africa for the surgery.

One reader’s opinion:

My biggest problem with Dr. Shevel’s claims is that no one else is commenting on them. He says he has had 85% success in 500 people, but no studies are written up. I sort of want to ignore “common sense” and just fly to S. Africa and give it a chance. Dr. Rozen, not disrespectfully, said, “desperate people will do desperate things”. He suggested there were still quite a few things for me to try before I decide I am that desperate.

This is where the conversation on the thread has ended.

I know that for myself, I would probably not choose this surgery.  I completely understand the desperation and need to feel better, but I don’t feel  there is enough evidence (as far as I can tell) that this is worth the risk of getting on the operating table.

There are some things that need clarity, such as the risks of the surgery. There are risks in every surgery, even those considered simple. Also, are there any possible long term side effects?

The one thing has become absolutely clear to me about NDPH after 6 years of suffering and four years of moderating this blog, as well as from my conversations with several doctors, is that the solution, the pain relief, is different for everyone. Some people will respond to the doxy treatment, some to nerve decompression surgery, for some people it is sinus related and for a few, botox has worked. That does not make any treatment sound very promising for everyone. It makes it simply another treatment to try and hope will work for you.

I would love to hear what you think about this surgery. How far are you wiling to go to find relief? And do you think that the pain would drive you to try something that your current doctor thinks is a bad idea?

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What Do You Need?

A cure, I know.

Over the years I have recieved many emails and comments from parents and spouses of people suffering from NDPH. The questions are almost always the same. They always contain the same desperation.

How can I help them?

What can I do?

I’m still struggling with the answer.

I want to know that the people around me care about how I am feeling on a daily basis. Then again, I don’t want to be nagged.
When I say “I’m okay.” It really means I’m dealing well. Often though, when I say that, I am met with,  “Oh!  I’m so glad you are doing better!”

That’s not what I said.

Maybe people with chronic pain have their own language. I seem to. Unless I go into great detail about how I am feeling, people don’t get it. And when I go into great detail, they get discourgaged, walk away and don’t ask again for a very long time.
Don’t walk away.
Don’t ignore it.
Don’t pretend the pain doesn’t exist, but don’t focus on it all the time.
Help me get my mind off it.
Ask me what I need, because it changes day to day, hour to hour with the pain.

If you look closely, you can see where someone is struggling. For a while, when my girls were younger, a nap would have made all the difference  in the world. Once, a friend took the time to research for me. I felt so incredibly supported and realized that I was really lacking the support I needed on a regular basis.

Our experience needs to be validated. DO NOT minimize the pain or the effort it takes to get through the day. DO NOT compare NDPH to that migraine you get once a month. It’s not even in the same ball park.

NDPH makes the people around us feel out of control, that is, if they fully get it. And maybe that’s the closest to our world that they will ever get.
Good for them.

What do you need? What would you tell your spouse / mother / friend to do to help, if you could be  totally and completely honest?

Please share your thoughts in the comments.