1. I have had NDPH for __8__ years.
2. It started after: June 2007, just before my son’s 1st Birthday.
3. After the headache started, it took 5 years to get a diagnosis for NDPH.
4. My pain level is steady/fluctuates: Fluctuates.
5. My typical pain level ranges from: Anywhere between 2 to 9 (maybe 9-3/4 on some days…)

6. In addition to pain, my symptoms include: Irritability, dizziness, nausea, fatigue, depression.
7. Treatments I have tried include: Acupuncture, acupressure, massage, chiropractic, oxygen, biofeedback, ice packs, electro-stimulation (TENS) Botox (5 times), nerve block injections (3 times), TMJ splint, meds, meds, meds and more meds. Cannibis, alcohol.
8. I take 8 vitamin supplements and thyroid meds each day for prevention and tramadol, hydrocodone, ice packs and cannibis when the pain becomes unbearable
9. When the pain gets bad, I: have to lie down with an ice pack, ear plugs/muffs in a dark room.
10. The most frustrating part about having NDPH is: Having little to no patience when my children get a little too loud or don’t listen. I fly off the handle much too easily. My kids are 10 and 8 and only know me as being irritable, short-tempered and in pain.
11. Because of NDPH, I worry about: Losing hope. I can’t imagine ever reaching the point of ending my life but losing purpose and responsibility is a real factor.
12. When I tell someone I have NDPH, the response is usually: “oh, like a migraine? I get headaches sometimes too. You should try (fill in the blank).”
13. When I see how little research and information exists on NDPH, I feel: Dejected. Like it’s a rubber-stamp diagnosis because doctors don’t really know what it is.
14. Having NDPH has affected my work/school life by: Causing me to pass up on promotions, advancements because I can’t add more stress to my life on top of NDPH. Who knows how much money I’ve passed up by telling my bosses ‘no thank you’ or not pursuing new/other positions?
15. Having NDPH has affected my family life by: changing who I used to be. I was happy, outgoing, helpful, patient. Now my kids only know me as being Headache Dad. My wife is frustrated because she’s seen how much I have changed over the last 8 years (we’ve been together for 20).
16. The one word that best describes my experience with NDPH is: Hell
17. My best coping tools are: Ice, quiet.
18. I find comfort in: Reading, movies, television, playing with my kids when I can.
19. I get angry when people say: “you need to see my doctor/chiropractor. They can fix you.”
20. I like it when people say: “I’m sorry. That’s terrible. Let me know how I can help.”
21. Something kind someone has done for me in relation to NDPH is: My company has really tried to accommodate me and put me in a position to keep me on board until I’m more healthy. They see my value and don’t want to quit because I can’t handle things anymore.
22. The best thing a doctor has ever said to me about NDPH is: We’re still learning. Someday there will be a treatment that works.
23. The hardest thing to accept about having NDPH is: No known cause/cure. It is related to something. Too many people are suffering the same way for there to not be a connection.
24. Having NDPH has taught me: Not to complain about the little things.
25. The quotation, motto, mantra, or scripture that helps me cope with NDPH is: One day this will all be over.
26. If I could go back to the early days of my diagnosis, I would tell myself: Don’t take all of those meds. They were throwing anything and everything at me to just get me back out the door and on to their next patient.
27. The people who support me most are: My family, wife and kids. My parents. Even my employers (I have missed some days over the last 8 years but for the most part I still work everyday, except when I filling out questioners on the clock). ;o)
28. The thing I most wish people understood about NDPH is: Just because ‘you don’t look like you’re in pain,’ doesn’t mean you’re not miserable all the time. It’s amazing what you can get used to… I really do try to do all that I can to keep up with everyday life, but some days are worse than other and I need some down-time.
29. Migraine and Headache Awareness Month is important to me because: Awareness. I am truly floored by seeing how many people are affected by the same thing I am yet every time you tell someone about NDPH the majority of people have never even heard of it.
30. One more thing I’d like to say about living with NDPH is: Someday. Someday this will be figured out. They will find the root cause and then one day they will find a real treatment, solution.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

Here’s how to share your story. And you can read more readers’ stories here.

Migraine Background

My diagnosis is chronic migraine headache with (occasionally) aura, light and sound sensitivity, lightheadedness/dizziness, and nausea but thankfully without vomiting. I am 17. I was diagnosed with episodic migraines when I was about 5 years old. I’ve had them ever since I can remember and my parents say that I started complaining of them as soon as I could articulate what was going on. I find the fact that chronic pain and illness in general is so unknown. But maybe that’s a side effect of such a widespread thing. All the people who experience it are forced to isolate themselves, so we don’t ever see them.

Migraine’s Impact on Sidney’s Social Life, School

This illness has taught me that I’m very comfortable being by myself and that I don’t need a constant companion to be happy. But, it’s a catch 22. I can actually be SO comfortable by myself that ‘alone time’ can stretch on until I’ve isolated myself too much. I will list the affected areas in the order they have been most impacted:

1) My social life. Since my illness started 4 years ago I have moved once. I had already lost most of my friends before I moved but I was able to hold on to 2 really essential people I care about. Since moving, I haven’t been able to make any friends.

2) School. I should be graduating this year, and the two really good friends I mentioned earlier are. But because of my migraines, I have fallen at least a full year behind on school, if not more.

Coping

I would have to say that at this period of time, I’m not coping very well, and that my main coping source comes from my pets. My relationships have pretty much been beaten down to my parents. I’ve been surprised by how much closer this has brought me to my Mom, and how it’s made me realize how similar I am to my Dad. My parents show their support by continuing to put up with me. I don’t always (most always) make it easy and I can’t put into words how much I appreciate that simple fact. I have one really good relationship with a health care provider and the others are just okay. I really like my neurologist (who is actually a headache specialist), and the others (like psychiatrist and therapist) are supportive but not really knowledgeable of my illness. They each support me in the ways that they know how, and that’s all I can really ask for.

Nerve Stimulator: Relief… Until it Stopped Working

I got the neurostimulator trial in June 2015. The electric leads go from the occipital area in the back of my head and over my ears to my forehead just above the eyebrows. [The leads are external, as this photo shows, only during the trial.] The rechargeable battery is about the same size as a pacemaker and was implanted in my non-dominant shoulder. My scar is about an inch long and is easily covered up. Usually for the first year, the stimulator needs to be readjusted for intensity and duration. This implant is very similar to what someone with chronic back pain would get.

During the trial and for the first few weeks I had the implant, my pain was kept at 5/10 at the most, and 0 pain at the least. I was singing hallelujah! Then after my grandmother died in the beginning of September, the stim stopped working. I don’t know if stress, or grief, or this crazy idea that my body learns to reject any type of treatment provided, but that was a big blow to take.

Now, for any of you that might want to check this out, there are two problems to consider: 1. You have to be referred or seen by a headache specialist. 2. The stim is VERY EXPENSIVE! My co-payment was about $10,000 with insurance paying much more. That being said, I hope there are some of you out there who can use find relief from this treatment.

Sidney’s Advice for Others With Migraine

My advice would be to make sure you like your provider and you feel that they are actually helping you. I’ve found that any Dr. I didn’t like, I didn’t feel was giving me proper support. Also, don’t be afraid to change providers if you’ve come to a standstill in your care. Even if you really like so-and-so, you need to actually feel like they’re helping you and things can get worse if this stops.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

Writing for the American Headache Society, headache specialist Brian Plato, D.O, says, “It should be noted that “regular” TENS units should not be used in place of the Cefaly.” He does not explain why.

Headache specialist Alexander Mauskop, M.D., said in a comment on my Migraine.com post about Cefaly, “My patients haven’t had much success with Cefaly. To save them money, I suggest that they try a regular TENS unit, which can costs as little as $50. It is not as cool-looking or convenient, but it offers more options in adjusting the current, frequency of stimulation and duration.”

Dr. Mauskop wrote on his blog that he was unsure whether Cefaly has an advantage over a regular TENS unit. He speculates that Cefaly could be better because of its convenience and that the current “may have specific frequency, strength and wave shape, which provides better relief. However, an electrical engineer could easily hook up the Cefaly unit to a monitor and figure out and publicize these settings.” (To my knowledge, no one has done this.)

Many patients point out in forums that their doctors and the instructions with their TENS units say not to use them on your head. One said that a regular TENS unit may be too strong for the forehead.

That’s all I can tell you. I cannot give a direct recommendation either way. Even if I could, I don’t have enough information to form a solid opinion. My best advice is to talk to your doctor about it.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

The strength of the moment was reinforced when the first presenter of the day, Dr. Dawn Buse, asked everyone in the audience with migraine to stand. Three-quarters of the room stood. She then asked everyone who had a loved one with migraine to stand. I don’t believe anyone in the room remained seated.

“These people care,” I thought so many times throughout the conference. I saw so many doctors, physician assistants, nurse practitioners, nurses and psychologists who are passionate and enthusiastic about headache medicine. They are frustrated about lack of funding and the stigma of headache and migraine, but they care deeply about and are dedicated to their patients. They are excited – ahem, cautiously optimistic – about the CGRP drugs that are in development for migraine as well as the neuromodulation treatments that are on the horizon (like transcranial magnetic stimulation and vagal nerve stimulation, both of which are noninvasive and should be available to patients soon).

This is the third year I’ve attended this particular conference and the fourth headache conference I’ve been to. The energy felt different. Maybe it was because I felt better and was able to engage more, but the enthusiasm and optimism seemed stronger than I’ve noticed before. Even more encouraging was the number of people new to headache medicine, mostly fellows in their early days of specialization, who attended the conference.

Yes, research for migraine and all headache disorders is underfunded. Yes, the arsenal of treatments is still nebulous and it’s hard to pin down what might help any individual patient. Yes, the stigma is still enormous. Yes, there is still a small portion of patients for whom it is difficult to find the right treatment. But the field is making progress and it’s being led by enthused and engaged providers who truly care for patients. The number of academic headache centers is on the rise, as is the number of fellows being trained in headache medicine each year.

I was already full of hope about the future of migraine treatment. This conference reinforced that my migraine and headache hope is well-placed. The tide is turning. It’s one of the many things I’m giving thanks for this week.

Want even more hope? Watch this interview with headache specialist and researcher Peter Goadsby. It’s well worth your eight minutes. (Many thanks to  Timothy for sending me this.)

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

That’s right, there is growing interest among neurologists throughout the world who want to treat patients with migraine. My headache specialist described general neurologists who have spent their careers treating a wide variety of neurological disorders other than migraine who are now seeing migraineurs as half their patients. The switch is partly because of those exciting treatments I mentioned above as well as Botox and Topamax.

It got me thinking. Maybe a reason there have been so few doctors treating migraine and headache is because there haven’t been very good treatments. If you were in medical school and choosing a specialty, would you want to enter a field where you had to tell so many patients, “Sorry, I can’t help you,” while also knowing there were few treatments in development and next to no research funding to investigate the physiological mechanisms of the disorder? Beyond those with a personal interest, I expect most people choosing that work would have to thrive on challenge.

Thankfully, some people fit that bill. They’re the doctors I have relied on so heavily. They’re the ones who have brought the field to a place where the future is beginning to brighten. It isn’t perfect, of course, and much work remains. Migraine research continues to be underfunded and treatments options are relatively sparse, even with the new ones in the pipeline, which could fizzle out before they get to patients.

Still, I like how the pieces add up:

the research that’s in progress
+
genetic discoveries about migraine
+
an increase in academic headache centers in the U.S.
+
more doctors knowledgeable enough to treat migraine patients successfully
+
fundraising for research
+
awareness-raising
=
hope many more migraine patients will find relief in the near future

And I hope that an increased interest in migraine means more attention for all headache disorders. Migraineurs may be the majority, but we’re not the only ones who know what it’s like to have our lives turned upside down by a poorly understood illness with limited treatment options. In fact, we’re better off on those fronts than people with many other headache disorders.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

Cefaly does not currently have a procedure code (also called a CPT code), which is required for an insurance company to cover any medical device or procedure. A company representative told me FDA approval is the first step in the long process of getting a CPT code. They expect it to be one to two years before Cefaly has a code.

Hope is not lost! Some migraineurs have found that their insurance companies will cover Cefaly the way they would any TENS unit using an established code for those devices. Google tells me those are E0720 for a two-lead device and E0730 for a four-lead device. The problem? Cefaly only has one lead, which may trip up some insurance companies.

HomeCare, a magazine for the home medical equipment industry, says that to have a TENS unit covered for chronic pain, your doctor must submit a statement of medical necessity and “must determine that the patient is likely to derive significant therapeutic benefit from continuous use of the unit over a long period of time. The physician’s records must document a reevaluation of the patient at the end of the trial period and indicate how often the patient used the TENS unit, the typical duration of use each time and the results.” Unfortunately, the article also says TENS units are rarely considered medically necessary for headache disorders. (This is general industry information. What you encounter with your insurance company may be different.)

Don’t give up without checking with your own insurance company. Enough migraineurs have received positive responses that it’s worth a try. Please let us know if you have success and, if possible, which code your insurance company is using.

Update on Cefaly availability: As of April 9, 2014, the order page of Cefaly’s U.S. website says, “Order intakes on hold for a week because of limitation in the supply chain.” This notice apparently went up today, so I hope that means you’ll be able to order from them next week. I’ll keep an eye on the site and let you know if anything changes.

April 15, 2014: Cefaly has removed the “not currently taking orders” notification from their website. They appear to now be shipping previously ordered products and taking new orders.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

The FDA has approved the Cefaly for migraine prevention in the U.S., according to an announcement from the agency yesterday. Purchasing details aren’t available yet, but it shouldn’t be too long since it is already being manufactured for other countries. It will be available by prescription, which I expect means it will also be covered by insurance. You can order one now at Cefaly.us. The device itself is $295 and a pack of three electrodes costs $25. You must send them your prescription before they will ship your order. I don’t know what this means for eventual insurance coverage.

Here’s an excerpt from the FDA’s press release that describes the studies the approval was based on:

The agency evaluated the safety and effectiveness of the device based on data from a clinical study conducted in Belgium involving 67 individuals who experienced more than two migraine headache attacks a month and who had not taken any medications to prevent migraines for three months prior to using Cefaly, as well as a patient satisfaction study of 2,313 Cefaly users in France and Belgium.

The 67-person study showed that those who used Cefaly experienced significantly fewer days with migraines per month and used less migraine attack medication than those who used a placebo device. The device did not completely prevent migraines and did not reduce the intensity of migraines that did occur.

The patient satisfaction study showed that a little more than 53 percent of patients were satisfied with Cefaly treatment and willing to buy the device for continued use. The most commonly reported complaints were dislike of the feeling and not wanting to continue using the device, sleepiness during the treatment session, and headache after the treatment session.

Neither of these studies are new and still have the limitation of being short-term, but I’ll reiterate that it’s worth trying out. Even more so now that you won’t have the additional expense of ordering it from Canada and your insurance may pay for it. I’ll keep you posted on it’s availability.

Here’s my experience with it, including a detailed description of what it feels like:

• Cefaly External Neurostimulation Device for Preventing & Aborting Migraine Attacks (Jun. 20, 2013)
• Cefaly: What it Feels Like & My Early Experiences With It (Jun. 24, 2013)
• Cefaly for Migraine: Diminishing Returns & No Long-Term Relief (Mar. 10, 2014)
• External Nerve Stimulation Device for Migraine Prevention Receives FDA Approval (Mar. 12, 2014) — this my write up for Migraine.com, which covers the facts and summarizes the research

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

The Cefaly can be used to stop migraine attacks in progress (and to stop other types of headaches, according to the manual, though all the published research is on migraine) or as a daily preventive. Since I have (had!) migraines every day, I hoped for both. Not only did I experience diminishing returns of acute relief, I never noticed a preventive effect. Stopping it did not increase my migraine frequency, severity or duration.

I’ve heard from about a dozen of you who tried the Cefaly. No one reported relief even as significant as I had early on and half couldn’t use the device because the sensation in their foreheads was unbearably painful. The Daily Headache readers tend to have chronic and/or severe chronic disorders, so we’re unlikely to be a representative sample. Maybe it’s less effective for people with more severe headache disorders or our propensity toward more significant allodynia (sensitivity to touch) makes it more painful than normal. (If you’re worried it will be painful for you, see if someone you know has a TENS unit you can try. The Cefaly is different than a standard unit in its electrode shape and preset programs, but you’ll get an idea of what it feels like.)

Do I rescind my recommendation? Somewhat surprisingly, no. As long as it’s in your budget (it is returnable, but you’ll be out shipping to and from Canada and a 20% restocking fee), I say go for it. We all respond to different treatments and several headache specialists have told me that even a 10% response rate in early research is encouraging. If you want to explore nerve stimulation without invasive surgery, want a drug-free treatment or haven’t had much luck with standard treatments, the Cefaly is, at the very least, worth a try.

I still have mine and will try it again soon. I’m hopeful that a few months without it will be a sort of reset.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

You can learn about my experience with occipital nerve stimulation and what the research says in my posts on Migraine.com from earlier this summer. If you’re curious what I had to say when I still thought mine worked, check out the archive of my nerve simulation posts on The Daily Headache.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.