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 mononucleosis. 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.
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 on Channel 10, WALB-TV, Georgia. 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% 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.