What's next for my teenage daughter?

Award00

Oh, I am so sorry to hear your story. You are not alone though, and I want you to know that. My son was diagnosed as an infant and was chronic by age 4. We got him back to an episodic pattern where he has remained until possibly just recently again. He's going to be 29. My daughter was a Migraineur from childhood when hormones became a problem. In her case, it was her thyroid that set things off, but then reproductive hormones became an issue too. It was tough, but she is managing right now.

Please understand that this is a tough spot. There are no quick fixes and these can be life changing. Migraine can be a serious disease, just like any other. It tears us up inside when we see our kids unable to do the things they once did, or want to do, but we need to help them understand that this is a serious illness and you need to dedicate the time it is going to take to get better management. Once that is accomplished, then her life will hopefully change again.

Only you and your daughter can decide if it is time to try another specialist. I often tell patients that it's really nice sometimes to get a second opinion. Sometimes it really is true that two brilliant heads are better than one, and specialists can work together to help a patient and actually appreciate it! But, you must have patience.

The fact is, it usually takes about 3-6 months to try a single preventive medicine properly. Not doing it properly means you may be discarding a helpful medicine by mistake. This is where the patience comes in. Trying things one at a time is really important so you know what caused a good result, or a side effect. This actually is a time saver. There are so many meds to try, that to do it right would take literally 25 years. This means hope for your daughter because of so many options. Getting a good start with a top notch doctor is going to be key for you.

Have you figured out her triggers and is she managing them well? Have you maximized all her health? Other problems can exacerbate and trigger Migraine. Are you giving her choices to make so she doesn't feel out of control during this difficult time? This is really important. Are you acting as a good example for her so she can learn how to be a positive but proactive patient who knows how to work as a team member to get these Migraines under control? These are all important things to consider, and places where you might be able to make some positive changes yet while your doctor helps you with medications and treatments.

Do you know about medication overuse headache? Also called MOH, this can be a big problem, and it's vitally important to keep it from being a problem for your daughter. I've even known kids to sneak acetaminophen or ibuprofen to make the pain better, without their parent's knowledge, and end up in MOH and chronic Migraine. Here is more information about MOH: https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/

~Ellen

Ellen,

Thank you so much for your reply. This was just what I needed to hear. We do feel alone in this -- I don't know anyone else dealing with such a serious migraine issue. So, it's great to hear from someone who lives in my shoes.

I know we need to give the new meds -- Inderal and protriptyline -- time to see if they will work. The Depakote worked beautifully for a month and we hope this will do the same.

Despite that, I do think it may be time, or at least getting close to time, to get a second opinion. Her doctor is not very progressive -- e.g., hasn't yet looked into TMS and won't even refer her out for it. It may take a while to find someone and get an appointment so I probably need to start looking now. Because she's only 13, we are very limited. There is a certified migraine specialist in our hometown but she does not see children under 15. We are likely going to have to travel.

With regard to triggers -- because she has refractory migraine and she has a migraine for extended periods of time, it's been difficult to determine whether there are triggers other than hormones. When she has gotten one -- it has always been on a hormonal day. We have no idea if there are other triggers or things that are exacerbating the situation.

As to MOH -- she only takes the meds given to her by her migraine specialist. While from what I've read, many people end up chronic after MOH, my daughter's very first migraine she ever had was refractory with migrainous stenosis. So, it's complicated 🙁

Again, thank you for your heartfelt reply. It helps to know that we are not alone!!

Hi! I felt I had to write to you to let you know my experience with my daughter. A year and a half ago she started getting severe migraines once or twice a month. Over the next six months, they increased to daily migraines, 8-16 hours in length. We had MRIs, trips to the pediatric neurologist who specialized in migraines, trips to the pain clinic at the children's hospital, behavior modification, special diets, medications, chiropractic, etc. She has been on so many medications. Abortive medications did not work at all. Preventive medications, including anti-seizure drugs, had little effectiveness. My daughter (I'll call her Annie) was unable to attend school for the last several months of the school year last spring. She missed all of the fall semester in 2013 and spent most of her time in a darkened room. Then I heard about the Reed Procedure (Google it!), and we investigated it. It is nerve stimulation that involves placing leads on the occipital and supraorbital nerves. The stimulation is provided by a battery implanted in her hip. She had the surgery in Dallas on January 9, and from that day on she has been migraine free! It is a miracle for us. She is totally off all her meds and is back in school living a normal life. I can't say enough about this procedure.

The procedure works on 80% of the patients who try it. Because it is not a sure thing, they will do a trial procedure first, an outpatient procedure in which all the wires are on the outside of the body to see if the patient responds to it. Annie passed the trial, so we knew that the permanent surgery would work.

I can tell you from being on other migraine forums that some people are very negative about this type of procedure because they see it as being "invasive." I guess technically, it is more invasive than medications and behavior modification. However, my experience has been that this is anything but invasive. Let me tell you about what I think is invasive. It is invasive to have to see the neurologist once a month, to attend weekly sessions at a pain clinic, to constantly be fiddling with neuro meds that don't work and have bad side effects, and to deal with school officials who do not understand migraines. My daughter had the quality of life of a terminal cancer patient. She had no relief. Even when the migraine passes she was "hungover" and had trouble focusing. The stress was unbelievable on the family. Now, she is back to a normal life and in school every day. She can participate in physical activities. She can ride in a car without having sunglasses on and a blanket over her head. She is losing the weight that she put on due to nine months of neuro meds that caused weight gain.

I will add something else. We live in a major metropolitan area with a nationally recognized children's hospital. Our pediatric neurologist who specializes in migraines had never even heard of this procedure. What I have learned from this experience is that you cannot rely on doctors to stay current in their field and know what options are available for migraine sufferers. Annie's neurologist thought we should continue to experiment with medications before pursuing surgery (after 18 months of experimentation!) Meanwhile, my daughter's life was passing by, and I was wondering how she would be able to finish high school, go to college, or get married. You can spend months and years trying to solve the migraine puzzle with meds and lifestyle changes. It is disheartening to see so many people on migraine forums who have suffered for years or even decades. I hope you will consider investigating the Reed Procedure. It could change your daughter's life. Good luck to you. I will keep an eye on this thread in case you want to write back with questions.

Awardoo,
That is absolutely fantastic news! Your story also shows that you have to be persistent in your own health care. Even if you feel you've "tried everything" there could be other avenues to explore, you can't give up! I'm so excited for your daughter and your entire family.

For anyone else reading this thread, the device implanted is also known as an Occipital Nerve Stimulator. Here is some basic information about Migraine Surgery:
https://migraine.com/blog/curious-about-migraine-surgery/

Thanks again for sharing and best of luck to you all!
-Katie