14-year old son with severe debilitating migraines

novasquared Community Member November 21, 2007
  • Hi,

     

    I have a 14-year old son who has severe migraines.  He has had them since he was 8 or 9.  His doctor has used various terms in relationship to his headaches:  status migraine, intractible migraine, chronic daily headache ...

     

    His headaches typically last 5 days or longer (he had one headache that lasted over 6 months 3 years ago) and are at levels from 6 - 9 for the last few months.  We rarely see even a couple of hours of the headache going lower.  Anytime the headache is above a 4 or 5, he loses his vision.  He cannot read, see faces clearly, or even read fairly large signs.  In addition, he gets both sound and light sensitive and any change of level (up or down) causes even more severe pain.  When the headache finally breaks, we will get from 1/2 day to 2 days break before he gets a new headache.  Between the intense headaches and the loss of vision during the headaches (which once it occurs does not go away until the headache is back down to a 2 or so), it is almost impossible to get him to attend school or complete schoolwork.  When his headaches are bad (7 or more), he often ends up staying awake all night because of the pain even with the headache even after taking Tylenol with Codeine.  Then when he finally gets tired enough, he crashes and is  almost impossible to wake for 8 - 12 hours.

     

    We have seen many doctors about this (two pediatric neurologists at Kaiser, two-pediatric neurologists outside of Kaiser, several pediatricians, and a chiropractor).  We are now seeing a doctor at the only headache clinic in our area that will treat pediatric patients that I am aware of.  He is very kind and keeps working with us to try new things.

     

    We have tried many preventatives and drugs to stop the headaches, including herbal remedies like ferverfew and the suggested vitamins, etc.  Nothing seems to be affective at preventing the headaches nor stopping them once we start.  If we give him a shot of Torridol, it stops the headache for 4 - 6 hours but then it returns, sometimes worse than before.  Tylenol with Codeine helps some of the time, but not consistently.  We have tried treating him with steroids (not prednisone, but similar).  Although the steroids don't appear to help while he is taking them, once the course of steroids is complete, we can get a shot of Torridol.  Then the headache will be gone and stay gone.  However the last time, he had another headache after 1.5 days.

     

    The school is hounding us because he is not getting an education.  We tried sending him to school with a headache and they kept him for a couple of hours and sent him home because he was, of course, non-functional.  They don't understand/believe that this is how he is almost all of the time.  I hate to have him miss so much school and education.  I also hate to make him suffer more than he has to when he cannot learn in this condition anyway.  He misses most school and fun activities.  He loves being in musical theater.  But his headaches have made him drop out of two plays.  He is not well enough to participate again at this point in his life.  He rarely gets to participate in fun things since in a 3 week period, we are lucky if we have 3 good days.

  •  

    Both the doctor and I feel at least some of the headaches are stress-related.  But that does not seem to account for all of them.  We have not been able to identify his triggers.  They may be weather or seasonally related.  But, I am not sure.  We have him in counseling to hopefully help him learn to deal with stress more successfully.

     

    This is tearing me up because I don't know what to do for him or how to help him medically, educationally, emotionally, ...  He now has the feeling that nothing will ever help make him better unless he gets lucky and grows out of it.  I have so many questions.

     

    How do I help him not give up?

     

    Is he getting the right medical treatment?  He has "status migraines", but no doctor has ever treated them aggressively the way everything I have read says they should be treated.  He is also a pediatric patient.  Does that meant they should treat it less aggressively and that it isn't as dangerous for him?

     

    What do I do about his education?  Do I push him?  Do I just accept that we do what we can and worry about making it up later? If so, how do I convince the schools that this is the right course?

     

    How do I figure out how much of this is psychological and how much physical?  And then what do I do?

     

    He doesn't take responsibility for his own well-being.  He won't take meds unless I remind him.  If he is hurting real badly at night or when I am at work, he will not get up and take the pain meds unless I tell him to and then somtimes he resists it.  How do I get hime and/or help him take responsibility for the parts he can control?

     

    I am a working, single mom.  I feel guilty when I leave him alone with his headaches.  (Every one in my family works too.)  I keep in close touch with him via im and phone during the day.  The school has questioned the safety of this situation.  But, I have to keep working to keep a roof over our heads, food on the table and very importantly, the medical insurance that allows him to get decent medical treatment.

     

    I can't be the only parent who has a child in a situation like this.  I am hoping to hear from other parents dealing with these issues and how they are coping with them.

     

    Thanks for listening,

     

    Jeanne

     

15 Comments
  • Nancy Harris Bonk
    Health Guide
    Nov. 21, 2007

    Hello, and welcome to MyMigraineConnection.com!

     

    Would you do me a favor when you SharePost and use a bigger font? Your SharePost was very difficult to read and I didn't want to miss any details.

     

    I'm so sorry to hear about your son. The two of you are going through a very difficult time, let's see if we can help you....

    RHMLucky777

    Read More

    Hello, and welcome to MyMigraineConnection.com!

     

    Would you do me a favor when you SharePost and use a bigger font? Your SharePost was very difficult to read and I didn't want to miss any details.

     

    I'm so sorry to hear about your son. The two of you are going through a very difficult time, let's see if we can help you.

     

    My first thought is to find another doctor. I bet you are tired of dragging him to new doctors but it is imperative for your son to get the right diagnosis.

     

    The only pediatric Migraine specialist we have on our list anywhere near you is in Texas. Some patients find they need to travel great distances, eight hours or more, to find the right doctor. We do have a list of Patient Recommended Specialists you can click  HERE to see. There are some Migraine specialists listed on the directory from CA.

     

    With your son's temporary vision loss, has had his eyes checked by an opthamologist lately? I'm also wondering what his head pain feels like. For instance- stabbing, burning or more throbbing and pressure like. Has he had MRI's and CT's to rule out other conditions? Sorry for all the questions. Just trying to give you as much information as I can.

     

    Basilar-Type Migraine is a Migraine that has aura symptoms originating from the brainstem and/or affecting both hemispheres of the brain at the same time, but with no motor weakness. This link explains things in detail- Basilar-Type Migraine - The Basics.

     

    It seems difficult for some fourteen-year olds to be "in charge" of their own health care. My thirteen-year old needs to be told to take tylenol when he has a Migraine. He just doesn't seem to "get it" that he can do it himself..... 

     

    Thank you for creating a SharePost.  SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

    We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. I see you made it to the forum. Great.To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

    Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information on the main page of our site, http://www.MyMigraineConnection.com.

    If you have any questions, please feel free to post them to the forum or send me a message through my profile.

    Welcome again,

    Nancy Bonk
    MyMigraineConnection.com Expert

    PS: If you receive this message from more than one of us, please excuse the overlap. Thanks!

    • novasquared
      Nov. 21, 2007

      Hi Nancy,

       

      Thanks for your post.  I have such a hard time seeing him in pain nearly constantly and with such a low quality of life.

       

      Is there a way to change the font after the fact?

       

      I would be happy to go to another doctor for a second opinion.  I just havn't been able to locate one.  I have seen both of the pediatric non-Kaiser...

      RHMLucky777

      Read More

      Hi Nancy,

       

      Thanks for your post.  I have such a hard time seeing him in pain nearly constantly and with such a low quality of life.

       

      Is there a way to change the font after the fact?

       

      I would be happy to go to another doctor for a second opinion.  I just havn't been able to locate one.  I have seen both of the pediatric non-Kaiser neuroligists I can find in my area.  We have Stanford Medical Clinic/Children's Hospital, Oakland Children's Hospital and UCSF all within an hour of my house.  You would think there would be someone.  Dr. Peter's does not think there is anyone else in the area to get a second opinion from.  We have talked about sending him to Diamond Clinic in Chicago.  If I had hope they could do something different with him, I would be willing to do that.

       

      He has not seen an opthamologist recently. But the school nurse had a machine to test with and he tested with 20/20 vision at a time with no migraine.  Should I have him seen when he is well or during a migraine or both???

       

      He describes the pain as something sharp pushing from the inside out usually on one side of his forehead,  a stabbing pain.  Most of the time the pain is one-sided.  It can occasionally switch sides or be two-sided.

       

      He has had one CT scan, a couple of MRI's, a spinal tap, lots and lots of blood work, allergy tests, ...

       

      I just saw the article on doing endocrine testing.  I don't think we have done that.

       

      You mention aura when you talk about Basilar migraine.  Robert does not get an aura.  When the headache hits, it just hits.  Once the migraine hits a 5 or so, he loses his vision as described in my sharepost.  Then, the vision remains at that level until the headache goes away or gets back down to a two or so.  He stays in this condition for days/weeks at a time.  So, I don't think the vision loss is an aura symptom in his case.

       

      Again, thank you for your comments/suggestions.

       

      Jeanne

       

       

       

       

       

       

  • Anonymous
    JeanineH
    Apr. 30, 2014
    WOW, Jeanne. My name is Jeanine! No really, it's true! CRAZY! My 14 year old has missed the last 6-8 weeks straight of school, accept for the six days off and on where she goes, then crashes from pain and misses the next 3 weeks. I cannot express to you in words the meme se gratitude I feel that I have actually searched and FOUND "OUR STORY"--it's like NO ONE...
    RHMLucky777
    Read More
    WOW, Jeanne. My name is Jeanine! No really, it's true! CRAZY! My 14 year old has missed the last 6-8 weeks straight of school, accept for the six days off and on where she goes, then crashes from pain and misses the next 3 weeks. I cannot express to you in words the meme se gratitude I feel that I have actually searched and FOUND "OUR STORY"--it's like NO ONE believes my teen, they all want to consider depression, or poor social skills, when if they backed up the diagnosis, they'd notice by the dates, these types of things they're seeing are in fact as a DIRECT RESULT of the migraines themselves. They've changed my daughter....I am at my ropes end. I am at the point is eat dog poop standing on my head in front of an audience ANYTHING TO MAKE HER PAIN FREE!!! Same story for us, 8th time at hospital they FINALLY gave her IV dose Maxaren/Torodol and voila: I HAD MY DAUGHTER BACK... 4-6 hours later she was back in her room, under her covers crying like a baby in PAIN. migraines in teens are soooo common that it's like the world doesn't get it, just because they're normal doesn't mean every child can live to endure this pain. I'm sooo afraid everyday. She's is Top Of Her Class, gifted almost I' hate watching her life get turned inside out due to pain that she shouldn't have to have... Oh my gosh, I just still cannot believe I found someone who understands. PLEASE Jeanne, if you are STILL ON THIS WEBSITE EMAIL ME through here, or message me through here, or find me on social media PLEASE!!!!!!!!! I would love to talk/write to someone that understands. We could support each other and so could our children?.. Thank you SOO MUCH for sharing your story!! I cannot thank you enough!
  • Anonymous
    dalpal
    Aug. 09, 2008

    ACUPUNCTURE!!!!!!! don't expect medical doctors to understand alternative therapies that work.

  • Anonymous
    Eduardo Sala
    May. 06, 2008

    Hi I also have a 14 year old son. Today he had an episode of headache combined with lost of coordination and he was not able to talk well and identify objects accordingly. The doctor told me he had a severe migraine, it is the first time he has a headache !! could this be posible or is there something else. What should I look for....

    Thanks a lot

    • Anonymous
      userlevel6
      Jun. 23, 2008

      I know the social stigma may have caused you to never even consider this, but if it was my child, I'd want to know about every possible solution.

       

      http://www.druglibrary.org/schaffer/hemp/migrn1.htm

       

      I use for treatment of Chron's disease symptoms, illegally because of laws in my state, but the alternatives I've been offered appear much worse. ...

      RHMLucky777

      Read More

      I know the social stigma may have caused you to never even consider this, but if it was my child, I'd want to know about every possible solution.

       

      http://www.druglibrary.org/schaffer/hemp/migrn1.htm

       

      I use for treatment of Chron's disease symptoms, illegally because of laws in my state, but the alternatives I've been offered appear much worse.  Don't let medical tyranny keep you from learning what doctors in most states can't tell you.  Seek knowledge and make informed decisions based on fact not fear & loathing.

  • Chris
    Mar. 13, 2008

    Sorry to hear that! Before Hallie came down with the status migraine, she had a terrible cold for two weeks and was so achey she did not go to school. I gave her Tylenol everyday, for the aches and pains. She had a headache during that time too, but I did not worry about it then because she always gets headaches when she is sick. I now think that giving her...

    RHMLucky777

    Read More

    Sorry to hear that! Before Hallie came down with the status migraine, she had a terrible cold for two weeks and was so achey she did not go to school. I gave her Tylenol everyday, for the aches and pains. She had a headache during that time too, but I did not worry about it then because she always gets headaches when she is sick. I now think that giving her Tylenol so much contributed to her condition. I've since read that too much otc pain killers can lower your ability to produce serotonin. I thought she may have been in some sort of severe rebound, but her migraine is still there. I've read the definitions for "transformed migraine." That does not seem to apply, because she is still nauseous and cannot keep things down well. We are 4 1/2 months into this migraine and she is so tired of hurting all the time. Yesterday the barometric pressure dropped considerably and that really spiked her headache and nausea. Is your daughter feeling better yet? Was she prone to headaches before? I wish you the best of luck and hope she recovers soon. Chris

     

  • Anonymous
    dominique
    Feb. 24, 2008
    my daughter caught epstein barr virus in november, since then she has had continual severe head pain, vertigo and photophobia, they are thinking it may be status migraine... undiagnosed as of yet. but i totally sympathise with you and would love to hear from you and chat about our kids, because i too feeling really low and miserable and just wish i coukld help...
    RHMLucky777
    Read More
    my daughter caught epstein barr virus in november, since then she has had continual severe head pain, vertigo and photophobia, they are thinking it may be status migraine... undiagnosed as of yet. but i totally sympathise with you and would love to hear from you and chat about our kids, because i too feeling really low and miserable and just wish i coukld help in some way. dominiquefisher1@msn.com
  • Anonymous
    Chris
    Jan. 28, 2008

    So sorry to hear of your son's migraines. My daughter, who is 12, is in the midst of a status migraine. I never even heard of them before Oct 07. Today we hit the 3 month mark. We've tried a myriad of drugs, and then no drugs, not even vitamins. The nausea and vomiting were so severe we had to seek a new neurologist. Now she is on metoclopramide to...

    RHMLucky777

    Read More

    So sorry to hear of your son's migraines. My daughter, who is 12, is in the midst of a status migraine. I never even heard of them before Oct 07. Today we hit the 3 month mark. We've tried a myriad of drugs, and then no drugs, not even vitamins. The nausea and vomiting were so severe we had to seek a new neurologist. Now she is on metoclopramide to control the nausea and vomiting, and amitriptyline. We spent the morning in the ER because she had spiked up so high. Now I am glad I took her because she was dehydrated.  We've tried diet modification, which lessen the spikes, but we cannot seem to break the status migraine.  Have you had any sucess eliminating food triggers?

     

    We live in a small town. Our local school has been very accomodating. They let her go to the alternative education room, and often keep the lights off. She only stays for an hour most days, if she goes at all.  My daughter also loves acting, but had to miss out on the Christmas play. She had the lead too.

     

    Have you made any progess since your post in November 07?  

    • novasquared
      Jan. 28, 2008

      Hi Chris,

       

      Thank you for asking about my son.  Actually, we are finally making some progress.  My son is now taking Depakote and Metaprolol.  He is now having more good days than bad.  It took about a month to really see it start to make a difference.  He is starting to be more active now, including taking up roller skating.

       ...

      RHMLucky777

      Read More

      Hi Chris,

       

      Thank you for asking about my son.  Actually, we are finally making some progress.  My son is now taking Depakote and Metaprolol.  He is now having more good days than bad.  It took about a month to really see it start to make a difference.  He is starting to be more active now, including taking up roller skating.

       

      Robert has been through headaches that last multiple months, one over 6 months, another about three.  He has often had headaches that last weeks at a time.  The depakote seems to be what made the difference.  Since about Christmas, his headaches have lasted 1 day or less and he has had more good days than bad.  We still see 2 or 3 headaches a week, but most are hours and not days/weeks.  I am hoping he will be able to stay that way.

       

      I know how heartbreaking it is to watch your child suffer for days/weeks on end and not be able to function normally or lead a normal life because of the pain.  It is so hard to sit back and know there is little or nothing you can do.  The medications that are supposed to abort the headache, have never aborted his headaches the way they do for many.  We have finally found Frova, it is helping more than anything else so far. 

       

      Suggestions:

       

      - don't be afraid to ask the doctor how long before you should see a difference (note:  it takes longer than you would like in most cases).  Then, if it doesn't work in that time, get him to change the medication.

       

      - research the available medications.  If the medication is not working at all, make sure they are trying different families of drugs, not just drugs in the same family, especially if you have tried several in the same family.  We had not tried any antiseizure medications with Robert until now and we have dealt with his headaches for years now.

       

      - Schooling is really hard with status migraine.  Don't be afraid to look at alternatives if this turns out to be long-term.  Online school is much easier on Robert.  He has more alternatives as far as controlling light, sound, when he does the homework, etc.  We were lucky and had one close by that is run by a public school district.  So, it is free.  You might have something similar in your area.   actually belive the content in the courses is better than what he got in the regular school.

       

      -  If you choose to stay in the public school system (and there are many good reasons to do so), make sure you get a 504 or iep plan for your daughter to make sure they make allowances for her headaches.

       

      There are many people on this site that are more expert than I am.  But if you need a friend to listen or want someone that you can call and talk to once in a while, let me know.  I will be glad to give you my contact information privately.

       

      Jeanne

       

       

    • Anonymous
      Chris
      Feb. 01, 2008

      Dear Jeanne,

       

      I am glad to learn your son is improving! That is very encouraging. It's been  hard to keep upbeat. My husband actually broke his leg, falling down the stairs,  while carrying Hallie. He is fustrated because he can do so little to help her now, not even get her a glass of water. 

       

      The school situation is changing next...

      RHMLucky777

      Read More

      Dear Jeanne,

       

      I am glad to learn your son is improving! That is very encouraging. It's been  hard to keep upbeat. My husband actually broke his leg, falling down the stairs,  while carrying Hallie. He is fustrated because he can do so little to help her now, not even get her a glass of water. 

       

      The school situation is changing next week. She is going to be tutored at the admin offices for 2 hours every morning. It will be quieter there, and they are going to set her up in a space that is not too bright and they are getting a " soft" lamp.  She hates for her peers to see her now, especially if she has a flare up because it's so difficult to walk. 

       

      We see her pediatric neurologist again next week. I will try to discuss more agressive treatment plans to break this status migraine. Thanks for the suggestion to explore medications by class. I don't know what we haven't tried. It seems like every thing,  but I'll re-evaluate this weekend.

       

      We are in Maine, and the closest headache clinic is in Connecticut, about 5-6 hours away. That is going to be the back up plan. She takes anti-nausea medicine 4 times a day, but still loses much of what she eats and drinks. I cannot believe she has been this nauseous for so many weeks, it's crazy and I think it hinders her recovery. 

       

       When your son had a status migraine, was it accompanied by nausea and vomiting? How did they break?  This is Hallie's first intense migraine, and the standard abortive treatments failed her too.  Intravenous DHE, compazine, and metoclopramide all brought the pain down a few notches, but were short term relief only. 

       

      I'm on the way to pick Hallie up at school now. Thanks for replying, I really appreciate your advice. It seems like her doctors don't know what to make of her situation. I don't think most of them have ever seen anytyhing like this in a kid before.  I do like the new neurologist and at least he has not suggested it's all in her head and seems open to changing treatment plans to help her.

      Kind regards,

       

      Chris  

  • Nancy Harris Bonk
    Health Guide
    Nov. 27, 2007

    Teri just called me from Dallas and said Dr. Krusz would be happy to see your son. He is one of the best!

     

    Click HERE for his information.

  • Nancy Harris Bonk
    Health Guide
    Nov. 21, 2007

    I have a few thoughts I'd like to share if that is ok.

     

    If you are thinking about taking Robert to Chicago a better plan would be taking him to Dallas to see Dr. Linder. Here is my thinking:

     

    San Jose to Chicago is 2165 miles. San Jose to Dallas is 1700 miles. Still a long way but well worth the miles.

     

    The Diamond Clinic...

    RHMLucky777

    Read More

    I have a few thoughts I'd like to share if that is ok.

     

    If you are thinking about taking Robert to Chicago a better plan would be taking him to Dallas to see Dr. Linder. Here is my thinking:

     

    San Jose to Chicago is 2165 miles. San Jose to Dallas is 1700 miles. Still a long way but well worth the miles.

     

    The Diamond Clinic does NOT have a pediatric Migraine specialist. Yes, it is "The Diamond Headache Clinic" but never make a decision about seeing a doctor based on a clinics reputation. The doctors reputation is what you need to be concerned with. Dr. Steve Linder deals ONLY with pediatric patients.  

     

    That is the route I would go if he were my son. A long trip but to find the answers and treatment plan will be well worth it.

     

    And as far as the eye doctor goes, yes it might be a good idea to see an opthamaologist because they can look at the eye and optic nerves. The school nurse cannot do that. Good to hear about the 2o/2o though.

     

    Let me know what you think. Happy Thanksgiving. 

     

    • novasquared
      Nov. 22, 2007

      Hello again Nancy,

       

      Thank you so much for taking the time to respond to me and share your thoughts.

       

      If I decide to take Robert out of state, I will certainly take him to Dallas to see Dr. Linder.

       

      Meanwhile, I looked at the links for recommended specialists in California.  One of them is Dr. Jerome Goldstein in San Francisco (about 1 hour...

      RHMLucky777

      Read More

      Hello again Nancy,

       

      Thank you so much for taking the time to respond to me and share your thoughts.

       

      If I decide to take Robert out of state, I will certainly take him to Dallas to see Dr. Linder.

       

      Meanwhile, I looked at the links for recommended specialists in California.  One of them is Dr. Jerome Goldstein in San Francisco (about 1 hour from my home).  Although he does not specialize in pediatric patients at his clinic.  He is participating in a study of 12 - 17 year olds.  This indicates he must see a fair number of pediatric patients with migraine, I would think.

       

      What do you think about visiting him first since he is relatively local?  At least I could get a second opinion.  Or would you go straight to the doctor in Texas?

       

      I am going to have him seen by an opthamologist.  I would like to have them see him both with and without a headach and perhaps document exactly far out of whack his vision is during a headache.  This might help me in dealing with his school even if nothing else is found.  And it is another rule out.

       

      I am also going to have a dentist look at him for any dental problems and/or TMJ in case anything there could be contributing towards his headaches.

       

      I will also go back to Dr. Peters and ask him if Robert has had the endocrine tests indicated in the article on Migraines and hypothyroidism.  If not, I will ask him to do those tests as well.

       

      Also, you pointed me to the article on Basilar Migraines.  Robert does indeed have some of those symptoms, but his headaches endure for days, not an hour.  And, as I explained, his vision loss does not seem to be aura-related.  It is more like part of the actual headache.  However, it would certainly explain why his headaches have not responded to the meds that he has been given since most would be contraindicated if this is the actual type of headache he has.  Given this information, do you think this is still a possibility?

       

      Jeanne

    • Nancy Harris Bonk
      Health Guide
      Nov. 22, 2007

      More blood work certainly can't hurt (except the ***** in his arm) and checking his thyroid and growth hormones may be a good idea.

      I think I might just head to Dallas given all the problems your poor son is having. While a pediatric neurologist may be a fine doctor, he doesn't necessarily deal only with Migraine disease/headache disorders...

      RHMLucky777

      Read More

      More blood work certainly can't hurt (except the ***** in his arm) and checking his thyroid and growth hormones may be a good idea.

      I think I might just head to Dallas given all the problems your poor son is having. While a pediatric neurologist may be a fine doctor, he doesn't necessarily deal only with Migraine disease/headache disorders and children. The pediatric Migraine specialist, Dr. Linder in this case, sees only kids, making him the real expert. I can't imagine the impact of taking him that far away, but he is such pain and having such a hard time in school I think that is what I would do.

      I wish I could provide you with more information about his aura and pain, but I'm not a medical professional so I will leave that up to the pros.

       

      Try to have a Happy Thanksgiving.  I'll be thinking of you two.