Posts by Teena:
I thought it was time for an update – a long overdue update. I am currently in the middle of my clinical rotations for pharmacy school. There is a light at the end of the tunnel after almost six years of college! I am traveling all around Indiana and Illinois for my rotations with a quick pit stop in Kenya for 8 weeks in October and November. I am on track to graduate in May 2018 with my PharmD from Purdue University.
As for my headaches – I am going to do a quick Q&A answering the most common questions I am asked by families.
Q: How are you doing right now?
A: I am great! I have not had one of “my headaches” in probably over a year. I cannot remember the last time I had one. As with age comes new triggers for headaches – since I turned 21 I have found that red wine is also a big trigger for me, so I only drink white if I have any at all.
Q: Why did you decide on nerve decompression surgery?
A: Having surgery was our last resort option. It was the next thing we could think to do after a long list of things that did not end up helping me. It was the first thing on the list that had any lasting positive effect.
Q: Is the surgery covered by insurance
A: For my specific plan, it was covered. Every insurance plan is different and every doctor codes things differently. If you are considering the surgery or any other procedure, make sure you have an open conversation with your doctor and reach out to your insurance company to see what is covered and what isn’t for your specific plan.
Q: Did you also consider nerve stimulators?
A: Nerve stimulators may have been next on the list for me if the surgery had not worked. However, because I was 16 we were very hesitant to try that because I was still growing. I had a neurologist at the time that also did not think it would be a good idea in my case. Nothing against stimulators! I have heard that they work for some people, but in my case we thought surgery was the safer option.
Q: My child is having problems with friends/ it seems like they don’t have as many friends as they used to. Did you go through that?
A: Yes. Besides the headache pain, the psychological aspect was the worst part of this situation. I could barely go to school, let alone go hang out with friends, so I was stuck at home most of the time. My friends seemed to drop away one by one and looking back I can’t really blame them. As a 15 or 16 year old, its difficult to stay friends with the girl with the mystery headache disease when the worst headache you’ve had has been treated with Advil. In the moment it was an awful experience, but I am who I am today because of it. I did have a few friends that stuck with me through the headache craziness, but I am no longer friends with most of the people I was when I was 15. My advice to any person going through this is to find your support group- whether that is family, online support groups, or me (I am tied to my email and you can always talk to me). My advice for any parents whose child is going through this is to make sure they know that you are there for them. Never stop asking questions and don’t stop until you find something that works!
If you have any other questions, feel free to send me an email!
A note from Dayna’s father. The website is called “My daughters headache”. It
is devoted to the children who are afflicted with this problem, most of whom seem to be girls,
but also to the parents. Dayna and my wife Teena seem to be inundated with contacts from
moms. We have yet to hear from a father or a husband. They seem to be in the background. So
I wanted to give you my perspective. I want the fathers to read this. When your child is sick it
effects everyone in the house. This was certainly true for me. When Dayna got sick it hurt. I felt
helpless. I felt unsure of what to do next. I didn’t know what to say or how to act or react. At
first it was, oh well sorry you felt bad today. Then it was missing school and the slow and steady
realization that we were dealing with a much bigger problem. It got worse still. It was not
cancer or some other well known disorder. It was a headache. When Scotty Pippen got
migraines and missed a Bulls game I laughed. But this wasn’t a migraine. It was debilitating,
not only for Dayna but for me as well. When your child is sick and in pain. When nobody
believes her or your wife that the symptoms are real, it becomes surreal. My daughter was
vibrant and full of laughter and fun. She did well in school. She read so much I thought she ate
books. Then suddenly she was on the couch and unable to read or smile. It was real. To me it
was unnerving. I found myself leaning on my wife for answers as much as the doctors. I also
found myself getting upset and sometimes even distant. I wanted to take the pain away and give
her her life back, even at the cost of my own. But there was no deal to be had. There was
literally nobody. Few who would even believe it was real. Try the bio feedback they said or
more drugs. A sixteen year old zombie is not the answer or a cure. I always laughed at the
axiom that some doctors had to graduate last in their class in medical school. Until I met them.
It seemed like most of them fell into that category and they seem to live at headache clinics. At
its worst (I believe it was when I set up the camera and took hours and days worth of video of
Dayna on the couch) I felt truly lost along with my family. I sat with Dayna. I remember putting
my head on her lap and promising that I would never stop looking for an answer. I would never
give up. I would never leave her to this monster that had taken her from me. Then came the
internet. My wife never stopped searching and ultimately came across an article about a teenage
girl in South Carolina who was helped by nerve decompression surgery. Teena found the child on
facebook (a miracle?) and asked if she could talk with her mother. Mothers again? From there it
was the connection to Georgetown University and Dr. Ducic. And from there two surgeries. I
never prayed so hard in my life as I did during surgery that she would find relief. She did. It is
not perfect and not complete, but the monster is gone and Dayna was allowed to move on with
her life. As fathers we sometimes find it difficult to express our emotions. I privately cried with
relief (a lot). When she felt better I told Dayna that she had to start this blog. That she was given
a gift when so many others were still on the couch fighting the monster. It was hard to find the
article about the girl in South Carolina. It would be easier for people to find this blog. I hear of
fathers in the background doing other things while your wives and daughters are searching and
fighting. I know it’s not because you don’t care or are not concerned, but because you don’t
know what to do next. Read this and understand that you are not alone and there is hope. Put
your head on her lap and tell her you won’t give up. Then consider all the options including the
decompression surgery. Contact us through the blog and talk to us. Never give up. You are not
One year since my first surgery and six months since my last surgery and I’m feeling great! I do get a few headaches occasionally, but these are in check with OTC medications. I’m just thankful that if I have a headache now it will go away! I have also noticed that I am more sensitive to some things now; it seems like I have become almost lactose intolerant. Whenever I have cheese or most other dairy products I get a headache. So as long as I stay away from cheesy pasta and ice cream I’m ok 🙂 The doctor has said that it can take up to one year for nerves to settle back down after the surgery, so these random headaches I experience are not without a cause. Sometimes I can feel my nerves moving around and getting back into place. Even taking into consideration those random headaches, I’m feeling the best I’ve felt in years! In other news, I graduated high school with honors and will be going away to college in the fall. I can’t wait for August!
December 18, 2011
Dayna’s second surgery was 12/16 at Georgetown University. The surgery was done by Dr. Ivica Ducic.
We were hoping for the best and so far so good! Like before, she was smiling in recovery and had no headache pain. Today, 48 hours after surgery, she is still feeling good. The incisions are starting to irritate her and she is having pain around them. But, the headache pain that she had had for over a year and a half finally seems to be gone.
December 29, 2011
Dayna is doing great! Her incisions are healing. She still has surigical pain but that is lessening each day.
We returned home on 12/20 and spent the evening talking, laughing and playing cards. It was so nice! We have not been able to do that since the headaches began because Dayna spent most of her time in pain.
The recovery after the temopral surgery has been fairly quick compared to the first surgery. Her incisions are behind her hairline just above her ears and are about 1 1/4″ long. She had very slight bruising at the hairline. But, unless you know her, you would not have noticed it. The swelling was minimal.
Dayna is on her Christmas break and has been able to enjoy herself. Last year she was in the hospital on IV therapy for her headache. This is such a welcome change!
This is the best Christmas present any of us could have gotten. We got our daughter back!
I should mention that she has been accepted into the Pre-Pharmacy program at Purdue University. We are all very excited!
I have wanted to write something on the website for a while but I was so busy with college applications and school that I didn’t have much time. First off, I just want to say that Dr. Ducic really saved my life. The headaches coupled with the ridiculous amount of medication I was on, most of which made my headaches worse, really took a toll on me. I was depressed and not myself. The worst part about having chronic headaches is that people just don’t understand how bad it is. “Just take an aspirin” is something I heard quite often. If someone can’t see what is ailing you, then they decide that it doesn’t exist. That mentality was particularly true for most of my doctors. Once they failed to find a cause, they decided nothing was wrong with me and I would have to just “grow out of it.” Obviously, they didn’t look hard enough, because Dr. Ducic knew exactly what was wrong with me. Granted, the surgery was really exploratory in nature and there is no test to find out if your nerves are compressed, but he was very confident that nerve compression was the source of my headache from the first time I talked to him. I only wish that neurologists and headache clinics would take a look at Dr. Ducic’s research on nerve compression and the results of the surgeries he has performed; this surgery could save thousands of lives.
I had a constant headache throughout my junior year in high school. Looking back, I’m not sure how I even passed junior year. As a result of my medication, I don’t have much of a memory from August of 2010 until about November of 2010. It also gets a little foggy from March until the beginning of June. I was unable to read text for most of the second semester of school, which made studying for AP tests and final exams pretty much impossible. Fortunately, my teachers where very understanding and I have some friends who very graciously helped me get my homework done; at one point, a friend of mine basically became my pre- calculus teacher. The entire time I was sick, my mom would continue to type my symptoms into the computer and see what came up. Our recent Google searches were things like “stabbing pain on side of face,” “chronic headache,” “chronic migraine,” “teenage headache,” and “constant 24/7 headache.” Searching around like this was how we found out about Dr. Ducic (It also made my doctors hate my mom because she was always throwing around crazy solutions for my pain and possible diseases during my appointments). I am extremely lucky to have only gone through this for a year and a half. Most of the other people I have talked to suffer for years, sometimes even decades, before they find something that helps them. This is the real reason we started this website; my parents and I want to help people get better. If we can help one person get their life back, then everything I have gone through is worth it. I am not saying that everyone’s headache is a result of compressed nerves, but I think the more people talk about a cure and research it, the more people will become aware of possible treatments and cures for chronic migraines and headaches.
As of today, I am doing amazing. I can read again (YAY!!) and am doing very well in school, besides having a major case of senioritis. The first surgery got rid of about 70 percent of my pain. I still have a constant headache on the side of my head, around my temples, but that should be taken care of with my surgery in December (we are counting down the days). I am finally almost back to normal! My mom just put a package in the mail for Dr. Ducic and his team containing a nutroll (an amazing Serbian dessert) and a card. After my first surgery, she vowed to send him one if he cured me. In retrospect, I’m glad that I went through all of this. When my life started to be taken over by the side effects from my medications, I began researching the medications themselves and wondering what really made them work. I also started looking into a career as a Pharmacist. I am currently interning at a local pharmacy for school credit and I love it! I can’t wait to start college in the fall. My decision letters from all of the colleges I applied to should be arriving in December. The realization that all of this is coming to a close is very exciting, but it also makes me think about all the people who haven’t found relief yet. Hopefully this website, and others like it, will help others who suffer from chronic headaches find a cure. Thank you to everyone who has read my story. Keep telling your friends about it! The goal is to help as many people as possible find relief!
Dayna is back to being herself.
The headache in the center of her head is not there. (Although, she has had a couple headaches that have gone away.) The shooting pins have stopped. She still has a “headache” around her temples. She is scheduled for nerve decompression on those nerves in December. We knew at the start of oll this that more that one procedure might be necessary. Dr. Ducic works on the area with the most pain first. Thankfully, the frontal surgery took care of both her headache and the spkes of pain she was experiencing.
Occasionally, the nerves tingle in her forehead. She has mentioned just a couple times since her surgery.
It is wonderful having our daughter back. She has submitted her college applications.
January 2010 – Dayna, our 16 year old daughter, began to have occasional headaches in January 2010 that eventually turned into a single constant 24/7 headache by August 2010. Over the counter medications did not help the pain.
August 2010 – Dayna saw a neurologist and began taking prescription medications that did not relieve her headache.
October 2010-December 2010 -Turned to the highly recommended Diamond Headache Clinic searching for relief of the 24/7 headache. The goal was for Dayna to have relief by her winter break from school. If she did not, she would be admitted to the Diamond Headache Clinic for inpatient therapy. Her diet was modified and biofeedback techniques were learned. Nothing eased her pain. Eventually, Dayna was hospitalized when different medications did nothing to relieve the
pain for intensive IV treatment. The treatment was not successful. Many different medication were given in the hospital. None relieved the pain. Dayna was released with the same 24/7 headache. Upon her release, she was prescribed medications that proved unsuccessful while in the hospital.
January 2011-June2011 – Went to a chiropractor thinking she may have a pinched nerve. She had little relief. Moved onto Northwestern Memorial Hospital for treatment. Not only did she have a headache at this time but she also developed spikes of pain in her face. Treatment for the headache and facial pain began. Nothing was successful. Some of the medications actually made her pain worse. Homeopathic medicine & Chinese medicine helped her immune system get back to normal after being on so many medications. Physical therapy was a disaster!
Medications that were prescribed thus far: Steroids, Topamax, Bystolic, Amitryptyline, Bellergal S, Voltaren, Ataraxm, Diphenhydramine, Indomethacin, Verapmil, Depakote, Midrin, Frova & Benydryl
April 2011-June2011 – Read about Nerve decompression micro surgery for relief of migraine. Few doctors do this procedure. We contacted Dr. Ivan Ducic at Georgetown University and got her paperwork in order. Dayna fit the criteria for surgery. On June 29th Dayna had surgery on the brow area of her forehead.
June 29, 2011 – She woke up in recovery and her headache and facial pain were gone!
For more details, click on Dayna’s Story