Forums


General Discussions

What's next for my teenage daughter?

  • By Award00

    I feel like we are at a crossroads and I’m not sure where to head next in trying to find a solution to my teenage daughter’s migraine. First, I want to point out that she does she a certified pediatric migraine specialist – the only one in our state. And, that we believe they are hormonal.

    She had her first ever migraine on 8/29 of last year it responded only briefly to any abortive meds she tried, OTC, triptans, DHE IV infusion in the hospital — all those worked for a short period of time or not at all.

    They finally put her on Elavil and Topamax and on 10/21 — yes — nearly two months later!! — her migraine ended.

    Unfortunately — it was back just under a month later and again would not respond to triptans on migranal. Switched the preventative to Depakote, which worked for a month.

    Now she has had a migraine since 1/6 – it waxes and wanes in intensity from a 3 to a 7/8 (which required an ER visit that took it took a 1 but only for 24 hours)

    We’ve switched the preventative to Inderal and are waiting for that to kick in.

    In the meantime, I feel like I really need to think ahead about what to do next. The fact that she is only 13 limits what we can do — no botox and no TMS — among other things.

    Is it time for a nationally recognized specialist or do I need to give my local, certified pediatric neurologist more time?

    It is so unbelievably difficult to watch your teenage daughter suffer day after day. She’s not in regular school anymore. She’s a competitive dancer and is continuing to miss that, as well.

    Any advice?

    Reply Created with Sketch. reply
  • By Ellen Schnakenberg

    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

    Reply Created with Sketch. reply
  • By Award00

    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!!

    Reply Created with Sketch. reply
  • By Lizzie

    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.

    Reply Created with Sketch. reply
  • By Katie M. Golden Moderator

    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

    Reply Created with Sketch. reply
  • By Award00

    @lbrush — I have read about the Reed procedure and while I know that it does not work for everyone, your daughter’s story gives us hope!!

    It has been 6 months now since this all started and, like your daughter, my daughter’s life has been turned upside down. She’s not in school and is unable to participate in life. She is a talented dancer and has been on a competitive team for 6 years but has had to give it up. She’s on her fourth set of meds in 6 months — every change comes with withdrawal and detox symptoms as well as new ongoing symptoms. So, I agree with you — if that procedure works — it’s totally worth the invasive procedure.

    I am wondering what the procedure costs. Did your insurance cover the procedure?

    There is a center where we live!!! I am going to pursue this.

    Again — I thank you for taking the time to share!!!

    Reply Created with Sketch. reply
  • By Ellen Schnakenberg

    Awardoo,

    I’m sorry as I’ve been post-surgical for other reasons than Migraine, and away. Trying to play catch up.

    Please explain Migraine stenosis. Stenosis is a narrowing of a canal, such as spinal stenosis. There is no headache diagnosis of “Migraine Stenosis”. Knowing this could be very important. Because her first Migraine never went away, I am concerned about her diagnosis. There are other that are similar (including new daily persistent headache and chronic daily headache as well as cervicogenic headache, etc) but need a different treatment. I would feel awful if you were missing that. In a case like this, seeing another doctor could be super important for a second opinion and a second set of eyes and ears.

    When you say you’re seeing a specialist, is your specialist board certified and listed here: https://migraine.com/blog/looking-for-a-migraine-specialist/

    I understand that you’re taking only the meds your doctor has prescribed for her, however it is exceedingly common for doctors to do this and accidentally put their patients in MOH. Knowing this and treating it is a key that, missed, could be the difference for her. We see it so very frequently, and it’s so devastating, that I am only wanting to be super sure. These young ones are resilient, but can’t take as much as adults where patience and persistence comes into play. As a parent, to watch them try is heartbreaking <3

    ~Ellen

    Reply Created with Sketch. reply
  • By Award00

    Ellen,

    First, I want to correct something I posted. My daughers diagnosis is Refractory migraine with with Status Migrainosis. I don’t know what made me type “stenosis”! – I clearly was having a moment!!

    Thanks so much for posting all of the links. I’ve read through all of them. I greatly appreciate this site and all of the information gathered and shared here.

    We are not running out for surgery tomorrow. However, it is something I am researching. We hate the effects that some of the medicines have had so a non medication route is worth considering.

    My daughter has lived in pain for the better part of the last six months. She has had no break for the last two months and is so worn out that, at times, she doesn’t feel like she can go on. It’s heartbreaking.

    I cannot thank you all for your heartfelt replies and the information you have shared.

    Reply Created with Sketch. reply
  • By Lizzie

    Hi, again!

    I’m really sorry to hear about your daughter, and I can completely relate to the difficulties you are facing. Chronic severe migraines are terrible for the person who gets them, but they are also really hard on the entire family, and everyone feels so helpless and frustrated!

    Our insurance will pay for it, but I am still waiting to receive all the final bills to find out if we will owe anything and how much that would be. I found the office staff at the Reed Migraine Center to be very friendly, easy to work with, and always willing to answer questions. They helped a lot when it came to talking to the insurance company and getting a sense of what the coverage would be.

    They will also connect you with people who have had this procedure done. I was able to talk to several of their former patients, and that was very encouraging. I think the youngest patient they have had was 14. Annie is 15.

    Another good thing about this process is that you will attend an orientation session with one of the doctors who will take as much time as you need to discuss the procedure in detail. Our orientation session lasted for three hours including the Q&A. The doctor was very forthcoming about risks and benefits, the history of the procedure, the patient results he has seen, etc. We had to travel out of state for this, but it was worth it. It is great that you have a center where you live.

    I will say that the worst, most nerve-wracking thing about this whole process for me was waiting to see if my daughter responded to the trial. 80% do, but I was so worried that she would be in that 20%. It was an incredible relief when it worked. I will never forget leaving the outpatient surgery center after her trial. She looked a little like a science experiment, with bandages on her head and wires everywhere (they keep the leads in for a few days). It was a bright, sunny day with snow on the ground. She started to get a migraine, activated the system, and poof! The migraine vanished. She did not even need sunglasses that day. A normal day for us when Annie had a migraine was if we traveled anywhere by car, she wore sunglasses and kept a blanket over her head. So this device is amazing.

    I’m also happy to continue talking about it on the message boards. [Message edited for personal content]

    Liz

    Reply Created with Sketch. reply
  • By ebbrodie

    any update?

    Award, your first post is exactly what my daughter (13) has gone through. First experienced Aura’s in Sept, Oct.

    First hospital visit before thanksgiving. DHE protocol for 3 days, two courses of treatment lowered her pain to a 1 or less.
    Next visit early Dec for a few days w/ some relief.
    Back in a few days later, left hospital after 4 days with no relief w/ max monthly dosage for DHE

    Told, your new baseline is a 6 or 7, take gatorade and detox off Advil, etc for 6 weeks

    No relief in sight.

    Reply Created with Sketch. reply