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!