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.
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!
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.
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.
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.
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?
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?
I’ve been toying with the idea of writing a book about New Daily Persistent Headache for years. There doesn’t seem to be one clear place to find information about it, and advice is scattered around the web, in forums and on a few random blogs. I would like to write the book that I wish I could have read when I was first diagnosed.
I have recieved countless emails over the past two years from people all over the world suffering, looking for help and support. I’ve collected dozens of stories, many similar to my own.
I need more! If you would like to share your story, or be interviewed for the book, please contact me in the comments below or via email. I’d love to hear more about your thoughts and struggles, the medications you have tried (successful or not) and the alternative therapies you’ve explored. I want it all.
The focus would be on personal stories as well as treatment options. I’m hoping to consult with a few well known neurologists that treat NDPH.
What are your thoughts on this? Suggestions? Ideas? Please share your opinion in the comments section and participate in the poll below.
Weird title? I know. Living with this headache is weird and horrible, but on some levels, I feel invincible.
I have made it through 5 1/2 years of almost constant pain. There are days that I think I can handle anything at all because of this experience and that the rest of the world is just full of whiny wimps crying about their colds, allergies, acid reflux and irritable bowels.
Do I sound a little bitter? Yeah, I’m working on it.
I might as well be wearing a cape and tights. I am a wonder to myself. Except when I’m in tears from the pain, beating myself up for eating a little brownie and triggering misery in exchange for a few minutes of chocolate heaven. Or when I realize I lost another day to the pain, unable to push through it and get work done, or enjoy a beautiful day with my kids.
So I’m weak and invincible. I’m angry but hopeful. I know that I am better now than I was 5 years ago.
From what I have seen and experienced, it seems that as the years go buy, we go through some kind of mourning process. First, we can’t believe this is happening to us. How could this be happening? How could the doctors not know what to do to help me?
Then we deny it and try to go on with our lives. When we realize our lives are just not what we want them to be, we hit bottom.
Depression sets in. It only makes things worse. So we get up again and try to put things back together. We try new meds or alternative treatments. We keep going.
We keep going. We may be sad for the life we wanted and don’t have. Sad for the precious time our pain is stealing from us. But we go on.
Acceptance. At the 5 year mark I hit acceptance. I hear of people having NDPH for 10, 30, 40 years. If that’s what I’m in for, so be it. I’ve made it this far.
I’m not saying that I’ve given up. I’m saying that I accept this situation for what it is and that has been empowering somehow. This is it. I’m going to deal now. It still effects me daily, and people don’t understand, but I can handle it.
At least most of the time.
What about you? Are you sinking, swimming or treading water?
NDPH success stories are few and far between. It is rare that we hear of someone getting 100% better. I recieved this story as a comment recently on an article I wrote about NDPH on Hubpages. I thought I would share it here as a full post, with the hopes of helping someone out there. He used Cranio-Sacral therapy, which I have written about before and have some experience with. Although I have heard some NDPH suffers say that it didn’t work for them, it is certainly worth a try.
“My son (11 years old) caught a virus and developed a headache on January 11, 2010. His symptoms seemed to be ‘strep like’. He had an upset stomach, a rash on his tummy and headache. His strep culture came back negative but was treated with an antibiotic for 10-days. After the 10-days, the only symptom that remained was the headache. Then he was tested for Lyme Disease. The test came back negative, but the pediatrician put him on doxycycline anyway. After 10-days of doxy, his headache was excruciating.
Another trip to the pediatrician and they sent him to the emergency room for a spinal tap. Spinal tap fluid tested clean – no sign of infection. Ordered a CAT scan – came back clear. Admitted to the hospital for high test drugs (DHE-45 primarily) and they were treating it like a migraine. The headache did come down in intensity, but was not eliminated. We began seeing a Pediatric Neurologist who continued to try and treat him with several different migraine medicines (many…including Maxalt and Amitriptyline). We went to neurologists at Hopkins, Children’s Hospital, University of Maryland Medical Center, the MidAtlantic Headache Clinic, and Sinai Hospital searching for a diagnosis and treatment plan. He had an MRI and an MRA/MRV – all of which indicated nothing abnormal.
On March 10, 2010, he was diagnosed with New Daily Persistent Headache. We began treatment with Topimax and slowly and methodically ramped up to 150mg – but there was no relief.
His headache got worse every day with no periods of relief, and when it became unbearable we’d go to the hospital for a few days of DHE. He also began experiencing a heightened sensitivity to sound and developed phonophobia. He started wearing noise cancelling headphones and soon became addicted to them…needing them all day and even slept with them on. Any noise became very painful , and he wanted total silence. We finally began looking into alternative medicine. We started having an acupressurist come to the house. She provided him some stress relief and relaxed him a bit so he could sleep better at night.
Then we saw an alternative medicine therapist that performed Craniosacral Therapy (http://www.integrated-therapies.com/Therapies/cran) On May 3, 2010, he had his first Craniosacral Therapy treatment. His headache drastically improved after the first treatment. His headache was gone after the 2nd treatment on May 6, 2010. After one treatment for his hearing, he was able to take off the noise cancelling headphones. The therapist (who we refer to as the ‘healer’) continues to work with my son on the hearing sensitivity as he needs to retrain the cochlear nerve in his ear to regulate sound again. I should also mention that the alternative medicine therapist reviewed the MRI (that 5 different neurologists had already reviewed) and showed us his collapsed eustachian tube (which contributed to his hearing problem) and tissue at the base of his head that was ‘twisted’ and under ‘tension’. Why did none of the neurologists see what she saw? Our healer said they look for different things…like cancer, shadows or tumors. She looked for structure and was able to prove using the MRI the things she described and felt during her craniosacral therapy treatment.
He has his life back. After spending 5 months at home, not going to school, seeing multitudes of specialists and 2 hospital stays, he is finally returning to normal.
I write this post to hopefully reach people who can benefit from our story. When he was diagnosed with New Daily Persistent Headache, I surfed the web and read many a blog with sad stories with no happy endings. We are fortunate to have found treatment that worked for us. We hope that this information is helpful to you and that you too find relief from your headache.”
Thank you to “Dara” for sharing the story of your son’s struggle to inspire and help others. I think this story shows that we should never give up, no matter how many different treatments you have tried. Hopefully my NDPH cure – and yours – is out there.
