Dayna’s Story

My daughter’s headache began in Jan of 2010 as an occasional headache.  She took over the counter meds to help alleviate the pain.  In mid February she was diagnosed with mono.  We attributed the headaches to her having mono as they subsided a bit as the mono improved.

But, the headaches returned in July and by August she had a constant 24/7 headache.

She saw a local neurologist who prescribed a steroid pack followed by Topamax.  The Topamax dosage was slowly increased over a few weeks until my daughter realized that it was making her a little “goofy”.  She does not remember much of the first quarter of her Junior high school year.  Weight loss, loss of memory and inability to  concentrate are all side effects of Topamax.  Dayna experienced all of these.

At this time we heard about the Diamond Headache Clinic in Chicago.  Since we are near the city, we scheduled an appointment at the clinic.  Dayna was  diagnosed with migraine with/without aura.  She was immediately started on Bystolic and Amitrypitaline to try to stop the cycle of the headache.  These  meds were tweaked over time as they never really took the edge off the pain.  After a couple months of this, she was taken off the meds and prescribed Bellergral S.  This is a mix of meds that was to stop the cycle.  All it did was make her sleep for about 20 hours a days.  (By the way, Dayna was 16 years old at the onset of these headaches).

The Bellergral did nothing but make the pain worse.  So, she was admitted for inpatient IV DHE therapy at the Clinic.  She was given 9 doses of DHE over the course  of 3 days.    At the same time, several other  meds  (Vivactil, Elavil, Depakote, Norflex, Torodal, Magnesium, Depacon, Phenergran, Keppra, Benadryl & Diamond Liquid Acetaminophen & Ibuprofen) were administered to help the headache pain.  She was also given Zofran for the nausea that typically occurs while given DHE.

After all of this, the headache remained.  Dayna was released from the clinic with the same headache she was admitted with.  At the follow up visit, her doctor actually said
that is was not unusual for headaches like this to just go away due to her being a teen.  AUGH!!!

At this point, we found a neurologist at Northwestern Memorial Hospital.   Dayna’s headache changed a little by this time.  She not only had a headache but she also had shooting pains in the upper quadrant of her head.  The neurologist was leaning toward a diagnosis of trigeminal neuralgia.  So, a different course of meds were tried-1000mg of Depakote a day.   She also tried indomethacin that might help with the facial pain she was experiencing.  Indomethicin did not help.  A course of Verapimil was tried.  It did
nothing except make her hair fall out!

The protocol called for a Psych evaluation.  She was found to be fine.  I, however, was told I was too emotional.   The pshychiatrist suggested that she not be  prescribed Divalproex(Depakote) because of her age.  The neurologisist had her on 1000mg per day.

The next drug was Trileptal.  While on this, the shooting pain increased.  Dayna decided on her own, she wanted to stop all meds.  They were not helping the pain.  After consutlting the neurologist, Dayna gradually stopped all meds.  She still had a headache but at least she was not in a constant fog.

If there was a side effect, my daughter got it!

We were told that there was nothing medically wrong and she needed to help herself.  I should  also add that 2 MRIs and a CTA were all normal.

We tried alternative means.  Homeopathic remedies were tried.  I don’t know if they helped but I think they did boost her immune system.  We saw a chinese herbalist.  Dayna was drinking special herbal tea.  Each week we brewed the twigs and leaves and she drank it.  This, too, helped boost her immune system, I think.  Chinese  medicine has been around for a very long time.  Something about this tea had a positive effect on her.

Physical therapy aggravated the pain.  Acupuncture did nothing to relieve the pain.  The acupuncturist was baffled by this and told her that this method was not for her.

Through all of this, I searched every symptom she had.  One day I googled constant headache with shooting pain.  A story popped up about a young girl with a constant headache and stabbing pain.  She found help at Georgetown University with Dr. Ivica Ducic.  Nerve decompression micro surgery was done on her  and she was pain free.  This sounded too good to be true.  Anyway, I sent the information onto the neurologist.  He thought surgery was drastic but maybe nerve blocks would help.

Nerve blocks were tried.  She had a little relief for a couple hours one day but then the pain returned.  We were at a dead end again.  By this time, my daughter had a  pain filled Junior year of high school.

We contacted Dr. Ducic in early June of 2011.  He requested a medical history.  Within a few hours of receiving my daughter’s information, he called and spoke directly to Dayna.  He thought she would be a candidate for the surgery.  We scheduled the first visit to meet the doctor.

After the initial consultation, the procedure was explained directly to my daughter.  It was much like carpel tunnel syndrome surgery but on your head.  Since the worst of her pain was in the her brow area, he would work there first.

Luckily, she was able to have the surgery on 6/29/2011.  Dayna was in a great frame of mind.  My husband and I were very nervous.  Incisions were made in her eyelids in order to clearly see where the compressed nerves might be in her forehead.

The nerves in the brow area were a mess!  One nerve was embedded onto her brow bone.  several others were “adjusted” and a thin layer of muscle was removed.   We met another family in the waiting room whose daughter was having a similar surgery with Dr. Ducic that day.  She, too, was told by many doctors that nothing was wrong and she needed to deal with the pain.  Her mother was told to stop doctor shopping.  She saw the same news story I did.

When we saw Dayna in the recovery room she was smiling.  She said her headache was gone.  She still had pain, but it was different.  Over time, the surgical pain subsided.  She did take pain meds for about 3 weeks.

I have to also tell you that by 7/11, she was counseling at an overnight children’s camp for 2 weeks straight.  She felt good and had a great time with the kids.  She did experience numbness in her fore head for a while.  We are about 2 1/2 months since surgery, feeling is returning.  Oh, she had a headache one day.  Then it went
away!  I told her it must have been just a “regular” headache.

None of the physicians in our area mentioned that there might be a surgical solution for my daughter’s headache.  The headache clinic was very good at prescribing medication.  There was no mention of this surgery or even the possibility of nerve blocks helping.

At least the neurologist talked of a nerve stimulator, Botox and nerve blocks.  I told him that my daughter did not need to have a wire and a battery pack attached to
her-especially since the success rate of the stimulator is not very high.  Botox, to me, would only mask the problem.  A nerve block might help determine if there was really a nerve issue.  Even nerve blocks are somewhat blind.  If the medication is not given in exactly the correct location, it will not help.

Even after the success of Dayna’s  surgery, some of our personal “physician” friends question it.  Yes, I do think surgery is drastic.  But, it helped my daughter get her life
back.  We could have gone on with nerve bocks, hoping to hit the nerve in the correct spot to ease her pain.   The one great positive is that Dr. Ducic was able to actually see her nerves and locate the probable source of the pain.

At this time, Dayna’s headache is about 60%-70% better.  This surgery took care of the pain in the middle portion of her head.  She still has pain in her temples.  We went back to
Georgetown for a diagnostic nerve block in the temple area.  She did respond to the block.  So, she is scheduled for the temporal peripheral nerve decompression surgery in December.

Dayna is a very strong and determined person.  She finished out her Junior year with a 4.2 average in spite of the nasty headaches.  She is completing her college applications for fall of 2012.  She has told me she does not regret what she has been through.  Dayna has learned much about herself, family and her friends.  She has decided to pursue a degree in Pharmacy.

We have this blog to let other people with no clear answer for a constant headache that there may be an option out there that can help.  If this helps just one person, then my family will be happy.  Watching your child go through something like this is heart breaking.  I am so thankful for the news report I found on the internet.  And, especially, for Dr. Ducic and his team.



  1. Thank you or sharing your story! This gives me something else to think about. Still no relief for my son after much doctor shopping. An epidural has helped some and I guess he’ll be getting another soon. My son also has Tourette with OCD.
    I hope that your daughter is still doing well!

    • Joni,
      I am glad that you have another option to explore after reading thus blog. The internet was instrumental in finding help for our daughter as few doctors are aware of the surgery she had. If you have any questions, please ask.

  2. Hello,
    I’ve been experienceing very similar headache pain for over a year now. It is everyday, non-stop. I have had MRIs, CT scans, spinal tap, bloodwork, etc–all have come back negative. I live in Chicago and currently have a neurologist at Northwestern Memorial as well. I would greatly appreciate it if you sent me an email (, just to discuss the symptoms and also how the nerve decompression has worked up until this point for your daughter.


      • I wanted to ask about your surgeries. I am having my first surgery on 10/16 for the occipital area but I am having the nerves removed not the decompression. What type of surgery did you have? Was it the decompression or excision of the nerves. Did the first surgery help a lot? I cant have both at the same time because of money so I was wondering how much relief did you get from the first surgery. Were you able to exercise again. I am a runner and would love to know if that is even possible to do any kind of exercise after the first surgery.

        • Jillian,

          My first surgery was a decompression. About two weeks afterward I was able to counsel a week-long kids camp where I was running around taking care of ~50 kids. I got a LOT of relief from my first surgery but I would definitely ask your doctor about how much activity he recommends you do after surgery, especially the first few weeks. Personally, I had a lot of surgical pain after my surgeries. It was nothing compared to my headaches, but they are cutting you open so there will be some pain there. My second surgery was an excision. It took a few years for my nerves to be totally fine again. I still get twinges occasionally but I’m just about headache-free at this point. I did not start running daily until this past year, so I’m not sure what your doc will say. I know I wasn’t allowed to ride rollercoasters with the kids at camp per my doctor’s recommendation. However, that was only 2 weeks after surgery. It all depends on what your doctor recommends you do!

          I hope this helps! If you have any other questions let me know!

          • Did your headaches start in the back of the head and neck and shoot forward along the occipital nerve? My daughter’s story is the same as yours and I am curious if her situation is similar to yours. Each person’s headaches are different.

  3. Your daughter’s story is similiar to mine in so many ways. I would love love love to talk with her about the procedure that she had done. My headaches started about 10 yrs ago, approx 1 year after a few car accidents that I had been in. I have tried all kind of meds, been through PT, Chiropractor, MRI, X-Rays, etc. The one thing that does differ is that I get the headaches in the back of my head, in the neck area. I am now seeing pain specialist, who did the occipital nerve block into the back of my head. I did get a little relief, maybe a few days, but the doctor said I should get relief for about 2 weeks. These headaches are ruining my life; it affects my work and calling off, marital problems with my husband, and socially, having to cancel plans/appointments, etc. And this is SO not me. I ifeel like a puppet because I have no control when the migraines are going to hit. I live with 24/7 dull pain in neck and about once/twice per week, I get a migraine. Pain clinic is now sending me to a plastic surgeon in our area for occipital nerve decompression surgery. It makes me a little nervous seeing this plastic surgeon, as he specializes in cosmetic surgeries. So I was looking on the internet and thats when I found you. I see that you really had a good experience with Dr. Ducic. I am from PA so it would be a few hour trip but I think I’d feel safer with someone who specializes in this surgery. My email is and I would love to hear from you !! Thank you so much for your time and for sharing your story. Angie

    • So glad you found the website! Let me know if you have any more questions, I’ll be glad to talk to you

  4. Hello, I am a 19 year old female living in Flint MI. I have had sharp shooting pains in the left upper side of my head for about two years now due to trauma. I have also been seeing a neurologist who just yeterday told me there was nothing else he could do for me because every test he has possibly taken showed to be normal. My pain is extremely severe to the point where I hate to go out anymore because I dont want to be a debbie downer to the people around me. I never really have headaches, just this sharp shooting pain that never goes away. I never am able to sleep anymore due to the pain and it seems as if everything triggers it. My neurologist also tried occipital nerve blocks which failed and I have been on every medication from topamax, imitrex, nortrityline, gafapentin and etc and NOTHING worked or even came close to working. I am at a dead end which is why I chose to write you because your story is very similar to mines. I find hope that you’ve had success with Dr. Ducic and although I do live in Michigan which would be a few hours away i’m to the point where I would do anything to get my life back. My email is and I would really love to hear from you! Your story gives me hope that one day I will be able to genuinely be happy again so thank you SO much for that and for listening to what I have to say! – Sharika

  5. Dayna’ story sounds very similar to what I went through as a teen. I have had migraines all my life. Diagnosed at 2, my twin sister and I were expected to “grow out” of of them” at puberty, so nothing was done. At puberty the migraines became chronic for me, I had one everyday and missed a lot of school. Most people didn’t understand and couldn’t believe that a girl could really miss that mush school for headaches. My teachers punished me, my doctor didn’t believe me- she even wrote “hypocondriac” into my file so that no doctor would be fooled by me, or try to help. I demanded to see a neurologist, then another and another. No one would or could help. My parents tried acupuncture, acupressure, a shaman, a weird man with herbs in the woods, raike, Chinese Medicine, diet changes, sleeping changes, any type of medicine. Nothing worked. Until I met a wonderful man, Dr. Gordon Robinson, head of Neuro in Vancouver. He agreed to try Botox. It actually worked! Although wasn’t pain-free I was about 50% better! I continued with Botox for 5 years. I still believe everyone should try it. However eventually I had to quit because of extra pain in my neck. I was on the hunt again for a cure. As Dayna, I tried every medicine including all the regular drugs, a type of acid, and topamax which caused memory loss of a few years of college. I had to drop out. I heard about Dr Guyuron’s surgery and started fighting through the Canadian medical system to get it. The system may be “free” but waiting years to see doctors, or finding someone that knows how to work the system is impossible. I couldn’t. Now, 6 years later I have moved out of Canada with a different insurance and things are looking up. New surgeons and surgeries are popping up, and Dr Ducic seems to be a better choice based on reviews. I look forward to scheduling a meeting with him. Your daughters story inspired me. Your words sound like they could be my own parents’ describing me. I’m glad Dayna has had so much support and was able to beat it at such a young age. And I’m jealous that she gets to study Pharmacology- I always wanted to be a doctor 🙂 I hope she continues to live a pain-free life and cherish it as only someone that has lived through pain can. All the best to you and yours. The K you you for your blog.


  6. These stories are identical to my daughter. It’s been over 18 months of the constant headache 24/7 with over 25 prescribed drugs taken in the past 9 months. We have tried diet changes, chiropractors, massages, acupuncture, applied Kinesologist, detoxes, lyme disease treatments, physical therapy, bio-feedback, psych analysis, etc. Medication has no affect on the pain in her head. I refuse to even call it a headache at this point as it’s a pain in her head. We have another appointment this week with yet another neurologist. I plan on bringing this article along with us. Not sure how insurance is going to handle any recommendation since we are currently disputing their denial of an out of network neurologist on the 3-5 day inpatient IV treatment. That along with facing truancy charges by the school this has definitely been a 7th grade year that my daughter would love to forget. Do you know if there is a min. age for the procedure? If you have time to email me it would be much appreciated!


    • Cory,
      I am not aware of any age limitations for this surgery. I have read stories of some as young as 12 having nerve decompression surgery.

  7. Thanks again. She has the 3-5 day IV inpatient treatment scheduled tentatively for next week but we are fighting with out of network insurance costs now as our in-network providers won’t do the IV treatment. Hopefully I can convince insurance to cover nerve decompression!

    I know the struggle you went thru and it’s good to know there is a glimmer of light at the end of the tunnel for some. The “she will have to learn to live with it” prognosis from doctors just doesn’t work when it’s your daughter.

  8. Hi, what a wonderful story. Dr. Ivica Ducic is a blessing, he too has helped me with neurolyis (2013) and brachial plexus injury (2014), which were all the result of traumatic fall in 2012.

    I wanted to pass on to your readers that Dr. Ivica Ducic has gone into private practice in April 2014, his practice info here: Plastic Surgery, Nerve and Headache Institute located at 7601 Lewinsville Road, Suite 460, McLean VA 22102. The office phone is 703.992.9233. Fax is 703.992.8647 or 8675. Melanie is his RN and Inga is his Office Manager. His website remains .
    He’s truly one-of-a-kind physician, surgeon and extremely humble. Best wishes and much success.

  9. Hello. I was looking for Dayna’s email. I have a very similar story.I was in a car took me about 3 yrs to find dr Ducic but have now had four surgeries with him. This past one was about a month ago And he cut my nerves in eyes BC of forehead and eye pain and top of head pain. I spend approx 25 days out of each month in the bed. I have two young girls and husband but my mommy and wife duties are pitiful. I would love to know what length of time I’m looking at before I get relief from the cutting of my nerves. I’m here to talk for anyone. 12529453155.thanks kathryn

  10. Thanks so much. This sounds so much like my daughter. She has had a headache for two months. We are on our third hospital admission , now on our second hospital. She has had most of the treatments and tests you mentioned and was even worked up for possible leukemia. She had a nerve block on Friday with relief for four hours. It was so nice to see her looking like herself briefly. So glad you shared your story and gave us hope and somewhere else to look for help. So happy for you, your story, and that your daughter is doing so well

  11. I would love to hear your thoughts on the Diamond clinic, as i am thinking about travellng to the usa and to this specific clinic for help for my teenager daughter and her chronic daily migraines. This would be a big trip for us and I need some more convincing (or not), Would you be willing to email me? thank you and all the best to your precious daughter… I know too well what she is going through… take care

  12. This story is almost identical to my daughter’s story. She is turning 17 and it has been 2 years of medications, alternative therapies, cervical and occipital nerve blocks and now botox. We live near Boston and will be trying to get a consult at Mass General where Dr. Austen does this surgery. Please tell me how she is currently doing.

  13. My daughter suffered a concussion two years ago (her junior year in high school) and has had chronic migraines since then. She lost two years of high school and has had to return from college because of the pain. We are seeing Dr. Ducic tomorrow and I would love to hear how your daughter is doing now. My daughter also has decided to be a pharmacist, but right now she can’t even make it through one art class with her pain, so she is very frustrated and fights hopelessness for her future. Any words of wisdom or encouragement would be very appreciated

    • Hi Kelly!

      I am doing great! I’m very busy with school and everything but haven’t had one of “my” headaches in a few months. It took me a few years to be completely headache free but I will never forget what it was like to be in your daughter’s shoes. For lack of a better term, it just really sucks. I did not think I would be able to go to college and honestly had no idea what I was going to do with my life. I felt down and out about basically everything, but when I came out of surgery my outlook completely flipped. It is amazing what a decrease in pain (even a small one) did to my outlook on my life. I hope that you have a good consult with Dr. Ducic tomorrow and he is able to help you. I will email you privately and give your daughter my information. She can email/call/text me if she needs anything.


  14. My son has had a headache that started in Dec of 2014 after a fever lasted til end of May with onlyba two week break from dhe in the hospital then another fever in Sept and returned. Back in the hospital in Oct and another short break but since Nov has had a headache 24/7. He is an 8th grader who has had home schooling almost the entire year. We have tried everything and I am watching him lose his hope of getting better. I am going to reach out to Dr ducic to see if he would be a candidate. Does anyone know what the cost is if insurance doesn’t cover. We have tried so many other things , I just want to see him back to himself.

  15. Dayna,

    My pain is identical to yours, I have been having it for 2 years now after a soccer injury that kinda twisted my neck… I have done all tests and was told to undergo a Cervical surgery on C6-C7. My arm pain is gone but headache still persists. Doctors are confused and throw medicine at me like I’m a pokemon. I tried all sorts, but nothing alleviates the pressure/throb/pain. I have one more year to finish university, but can’t concentrate so im home-bound. My question to you is, did you have this vice-grip kind of pressure/pain throb at the base of you skull? How would you describe your headache? thanks

    • I apologize for not responding sooner! As for your question, my pain was always from the center of my face traveling upwards until about the middle of the top of my head. It was honestly all types of pain- throbbing, pressure, and also these things I called “spikes” that basically felt like lighting bolts were running through my face. I did not have pain through my lower skull or neck, however I have heard of other people experiencing the pain like you describe that have been helped by nerve decompression. I have also felt really similar to a pokemon. Hardest thing to do was to get doctors to try to figure out WHY it was happening instead of just treating my symptoms.

      Let me know if I can answer anything else for you!

  16. We are so delighted to have found this website last Sunday – my daughter is 16 and has been suffering almost identically to Dayna’, up and until then we thought she was a one-off. No treatment has been effective and she has had similar side effects from all the drugs they have tried her on. We have now pulled her out of school as she is so stressed. We are in the UK and I don’t think we have the decompression surgery mentioned – but I will go with your blog to our neurologist and see what the response is. Maybe a visit to the USA if we can afford it. Incidentally – my daughter has completely lost her sense of smell – was this your experience? All the best

  17. I am in tears and losing my mind trying to find help for my daughter. Her headache has just begun and I fear a long road of nothing helping as you mentioned in your story. Her headache is destroying us. She is fed up with doctor appointments already. I don’t know what to do no one is doing anything. We go to the dr we explain the symptoms we schedule more appointments more test but nothing is being done. She tells me she feels like a drill is in her head and this headache came in out of no where. I am so scared that these 6 weeks is only the beginning of a very long road. I don’t even know what to do anymore. I am beyond frustrated. Thank you for posting your story I praying we don’t have a similar experience. We live in New York but at this point I will travel anywhere

  18. Hi Dayna,
    I’m just wondering how you are doing now, a few years later? I have had a non-stop migraine for three and a half years and considering traveling to the US for nerve decompression surgery (if I’m a suitable candidate). It’s not available in Australia and I’ve tried EVERYTHING! I’d really love to hear how you are going now – and I really hope it’s positive news!!
    Thanks so much,

  19. My daughter is 10 and has been in constant pain for 22 months straight. We have tried it all including Botox and I do, like you, believe it masks the problem. I am very interested in researching this as an option for my daughter.

  20. I, too, am wondering how Dayna is doing. It’s now February 2018. I had a decompression surgery in August 2016 from Dr. Jho at the Jho Institute at Allegheny Hospital in Pittsburgh. Relief lasted for about 6 months, at which time I began to experience debilitating headaches again. I’m now using medical cannabis (CBD—the non-psychoactive part of the plant) daily, and it has provided some relief until the flare-up I’m currently having. Due to the medical cannabis, I went 5 months w/out an occipital nerve block!!! This was so promising, because the steroids have such bad side effects. I had had 13 nerve blocks in the course of 12 months, which led to my decision to have the surgery. Ironically, the emotional side effects of the steroids resulted in my having an emotional “melt down” the other night, which then exacerbated the nerve pain. Dr. Jho thinks that I may have developed scar tissue along the previous surgery site, and is willing to r repeat the same surgery in order to remove the scar tissue and do any necessary decompression again. I’m hesitant, but need to do something to get out of this hellish cycle of pain. Although I’m MUCH older than Dayna (I’m 62), I sure don’t want to live the rest of my life in pain! I have been a successful psychotherapist in private practice, and it breaks my heart to just walk away from my livelihood. My heart goes out to the young people who have experienced this debilitating condition. Dayna, please provide an update when you have a moment. Thank you! Susan (

    • Hi Susan! I am doing great! Still no headaches! I did have some residual headaches for a while after my surgery, but they subsided after a year or two. I answered your question in more detail in an email and am looking forward to talking to you. – Dayna

  21. Hi, I’m wondering if Dayna had any kind of head trauma prior to getting the headaches. I’m considering the surgery with Dr Ducic and looking for more info and it seems like so many just started getting headaches for no apparent reason.

    • Hi Martha,
      I did not have any head trauma prior to getting headaches. They honestly seemed to start out of nowhere like you said. In my case, it was a physical abnormality with the way my nerves were positioned in my head that caused me to have headaches. Dr. Ducic was able to reposition those nerves during surgery which ended up relieving my pain. I hope that answered your question! – Dayna

Leave a Reply

Your email address will not be published. Required fields are marked *

Time limit is exhausted. Please reload the CAPTCHA.