New Daily Persistent Headache Support Group

Hello everyone,

I have been suffering from NDPH for about 8 years (although it came on so slowly I don't honestly know when it started) and it has had a very severe impact on the quality of my life. I am now 18 years old and essentially it ruined my entire high school career (grades, friends, sports) and it got so bad that I had to come from college for the second semester and attend community college, not to mention it ruined my social life and my ability to think clearly and be productive at all. It actually got a whole lot worse than that. but I'll save you the pain of listening to a seriously depressing situation. I have seen just about every kind of doctor there is (chiropractor, psychologist, psychiatrist, neuroligist....etc) with no relief whatsoever. I am currently seeing Dr. Nissan at the Diamond Headache Clinic because I live in Chicago and while he is a great doctor the only relief ive ever gotten was from a 5 day stint of Methergine (vasoconstrictor) from him. His regimine for me as of now is 60mg Cymbalta and 10 mg Bystolic and 2.5 hours of cardiovascular exercise per week.

Like I said before, none of this is giving me any relief so after hearing great things about Dr. Blake on this forum I finally made the trip to see her. She is a wonderful doctor in every way possible. It is immediately apparent that she is very understanding of your condition (which hardly any doctors I've seen are!), and she is EXTREMELY knowledgable about the subject. She then evaluated me for the Nerve Decompression Surgery and decided that I was a good candidate. Immediately following this appointment we traveled to Dr. Perry's office who is also a top-notch physician, both in his knowledge of the subject and the manner in which he communicates with his patients. To put it simply, these are the two best doctors I've ever had, hands down.

And now onto the most important part of the matter, the actual diagnosis and what they told me during the appointment. Dr. Blake made the diagnosis because of many factors but the main thing that she did was apply pressure to the base of my Occipital Nerve, which consequently sent pain along the nerve up on top of my head reaching almost to my forehead. No other doctors had bothered to even touch my head or do any inspections like this. Also, she proceeded to tell me why there has not been much published on the subject: Big Pharma decides which studies get done, and this would essentially cost them alot of money to eventually lost some of their longest costumers. (However, some physicians from Harvard are collaborating with her and she said this is the big stamp of approval they've been waiting for).

Then at Dr. Perry's office, I sat down with him in a sort of conference room in which he showed a Powerpoint presentation describing the procedure along with statistics and pictures of the surgery. This was VERY informative and the statistics show that about 80% of the 400 people they have operated on have had at least half of their pain go away. Also, once the procedure is done regular pain medications such as aspiriin will start to work! He also stated that every single person that they have operated on has in fact had their Occipital nerve compressed by the neck muscles and the scar tissue that formed. However, once the surgery is done, in order for the pain to go away, the nerve has to heal once the pressure is taken off. Its my personal hypothesis that the people who didn't get relief from the surgery are the people whose nerves had been permanently damaged, and that the surgery in itself was actually very successful, but who knows I'm not a doctor.

I am going to get a nerve block in Chicago (couldn't do it that day because my flight was the same day) to confirm the diagnosis after which I will go forth with the surgery. These two doctors actually get at the real CAUSE of the problem and not just fight the symptoms, which makes all the difference.

Also, one last thing!

Dr. Perry said that this condition was often do to a birth defect of sorts in which the nerve goes through neck muscle instead of around it which is why there is so much pressure on it, which I thought was very intesesting.

If anyone has any questions feel free to PM me, otherwise good luck to everyone and if you have exhausted all other options you absolutely should go see these two or Dr. Ducic or Dr. Bray who also treat this condition similarly.

Welcome to the group! Best of luck and please keep us posted.

Hi and welcome to the group. I am glad that you had such a good meeting with the doctors and have a new approach to try. A number of people in this group have had the decompression surgery with Dr. Perry. Some have gotten great results, others are in the group with no benefits. I wish I knew why it worked so well for some and not others (I think we all wish we knew that!). I hope that things go well for you with the nerve block.

I hope the surgery helps you! My husband has been through both with Perry. He is still left with his "original" headache. It's been 2 years since the last (frontal) surgery was done. The surgery seems to mainly be successful for people with migraine, not NDPH. Keep us posted of your progress. I wish you the best!

Any update, reliefpitcher? I see you joined us on another thread. Best wishes.

Very eager to learn how you are feeling?

Sorry you are having a tough time with this. We also have private messages here that folks can contact you through. Often insurance will cover exams, both physical and psychological, which relate to a surgery, even if they don't cover the surgery. I have had two psych consults (one when beginning with my pain doctor and one to submit with a nerve stim trial pre auth to my insurance) and for both I just made the appointment with the doctor, paid my copay, and they billed my insurance.

The insurance as usual paid only a percent of it (mine was billed as nearly $1,000) and the doctor wrote off the rest (didn't back bill, as most doctors have agreements with insurance to not do this). You will likely need to ask this specific doctor about the possibility of using a different doctor. I'm assuming they are having them write a letter for your insurance (saying you have no psych issues which will hinder the surgery) and certain doctors know exactly what the insurance is looking for. Even if its just for them, they are probably looking for certain things so they use a certain doctor who knows this.

There is usually more than one they will work with though due to location, insurance, etc, so definitely ask directly. You are the doctor's customer so there is no reason to be afraid of asking for their help when needing (as long as you aren't calling daily and pestering and such...this is a legit question which they can likely answer over the phone after consulting with a certain staff member).

Definitely go through the appeals process...they don't have it easy, but there are several levels to go up. If your doctor can directly speak with the insurance that is suppose to be the most helpful, but also for the patient to submit appeals (such as how much this should save them in the next 5 years or whatever, how the illness affects you, study data on the procedure, what you have already tried, etc). Typically they deny this stuff as it is not FDA approved, and therefore considered experimental (and most plans exclude experimental treatments). Best wishes.

Post edited by: tortoisegirl, at: 11/06/2012 06:17 PM