Finding a Doctor to Treat New Daily Persistent Headache

Is it possible there is a treatment out there for NDPH that your current doctor is not aware of? If you are being treated as a migraine patient, then chances are there is more that can be done.  From my own personal experience, and the countless emails I have recieved over the years from fellow NDPH sufferers, I know that this headache will not go away with a migraine medication.

Finding a doctor who understands and specializes in treating NDPH is tough. There are not that many of them, unfortunately.

For me, finding the support of a knowledgeable doctor was vital. Dr. Todd Rozen at Giesinger Medical in PA was that doctor for me. He may not have a cure, but he offered many options.

Previously, I had seen a doctor at the New England Center for Headache in Connecticut. They are knowledgeable about NDPH, but I don’t feel that they were at all cutting-edge. They can help you get an accurate diagnosis, but beyond that, I do not feel comfortable recommending them based on my personal experience.

I would like to put together a list of NDPH doctors, and for that I need your help. Will you take a moment to leave a comment and share with others any information you may have about a doctor who specialized in treating NDPH?

If you are looking for a doctor in a specific part of the country and don’t know where to go, leave a comment as well and I will try to find a recommended doctor for you.

Please take a minute to help! Share any information that you think will help our readers here.

Closer to Fine

Last month, I hit the seven year mark with NDPH. I also reached my 40th Birthday.
I didn’t really want to celebrate either of them. Do you blame me? 🙂

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

Does Botox Work for New Daily Persistent Headache?

Can Botox injections stop the pain of NDPH?

I’ve heard this same question asked consistently over the past seven years. The answer differs, depending on who you ask.

Although I considered it, I never got around to trying it. I kept putting in off and trying other things instead, because I am cautious. At the time I was considering it, insurance wasn’t covering the cost of injections to treat headaches, even though there was some evidence to prove that it is effective.

  • I’ve heard NDPH patients rave about how it works for them.
  • I’ve heard others say the injections didn’t even touch the pain.
  • I’ve heard accounts of temporary paralysis of the eye muscles.
  • I’ve heard people say that the treatment worked for a while, then stopped working.

Is it worth trying? I would say yes, if there is a chance it could stop your pain. Be sure to evaluate all the risks before you make your decision.

Have you already tried botox injections to treat your NDPH?

Please share your experience in the comment section below.

Thankfully Recovering

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

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

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

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

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

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

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

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

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

Amy 🙂

Can NDPH be Cured without Medication?

I received another personal story this week that I would like to share. Although I did not find a cure for NDPH with this method, it may work for you. Clearly, relief comes in different forms for different people.

The following story is from Auli Peltonen in Finland:

“Hi Amy and all people who suffer severe headaches every day!
It’s been just about six months ago when I healed from my daily, terrible headaches and now I feel up to sharing my story;
Just like everybody who suffers this awful condition of headache, every single day, some days you can tolerate it and some days you just want to jump from the roof.
I had my headaches for 188 days and that felt so terrible, I wouldn’t wish it for my worst enemy.
Well, you all know what I’m talking about…
From the beginning, I was very eager to find out what’s causing this pain, saw so many doctors I can’t even count them anymore, tried too many medications, some of them made me feel even sicker, tried acupuncture, massage, exercise,
all different doctors and medications…nothing helped!
I was told by chief physician that they can’t do anything else for me but try different medications and hope something would help. I was totally depressed and amazed by the fact that they “turned their backs” at me.
I was supposed to stop gradually one medication and start a new one, then I decided to have a little break from medications;
I felt that I was pumped up with all these meds and wanted to cleanse myself for a while before starting a new medication again, I figured it couldn’t hurt me since headache was there every day anyway…might as well take a tiny break.
AND THAT’S HOW I HEALED!!
After I stopped all medication, it took about one week for all the other side effects to go away and suddenly I woke up one day and didn’t have any headache!!
The feeling was so unreal, I bet you can all imagine how amazed I was…”listening” to my head, when would it start again. One day pain free, then second day pain free, third day…
Now it’s been a little bit more than half a year of pain free life 
It took quite a while for me to realize that this is normal state, headaches are not coming back, I can finally live my life again!!
What I’m trying to say; try to be brave, loose the medications totally for a while, give your body some healthy times without any meds and hopefully your head will thank you like it did to me.
What do you have to lose?
I wish you all better times, be critical, doctors are not always Gods.
-Auli “
Thanks for sharing your story Auli, and I hope you continue to enjoy good health!

Physical Therapy for NDPH: A Success Story

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

Up and Down and Down Again

The Cast of Stand By Me

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

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

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

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

Pie eating contest in Stand By Me

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

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

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

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

Lyme, NDPH or Both?

Pain and Isolation

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

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

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

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

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

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

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

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

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

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

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

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

New Year, New Diagnosis

Chronic Pain

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

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

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

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

This time, I tested positive.

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

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

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

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

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

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

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

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

Stress, Anxiety and Headaches

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?

Please share in the comments.