Migraine
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Fledgling |
Hi,
I am the mom of a 14 year old girl who has had a migraine headache for 16 months. Her symptoms have been getting worse and she is missing 2-3 days of school a week now because of dizziness and nausea/vomiting in addition to the migraine pain and eye pain. Stress about missed work definitely exacerbates the symptoms. Her 504 has been helpful. My daughter has taken the following meds: propranolol, cypoheptadine, neurontin, amatryptaline, zonicimyde, topomax, and now depokote. She has also tried several different triptans. I was wondering why they didn't work. Nothing she has tried to date has lessened the symptoms. She has had every test the pediatric neurologist could think of including spinal tap and trip to cardiologist (dizziness). We are soon trying a stay inpatient. Is there anything special i should look for during an inpatient stay? I have looked at the doctors listed that specialize in migraines, but i am not seeing much for my area. I don't mind driving some. Does anyone from my area have a headache clinic to recommend? There are certainly many wonderful hospitals around the Boston area. At 14 is she too young to see an adult specialist? I have really enjoyed reading many of the stories presented on this site and i feel we belong here. I especially liked the video clip i came across that Andrew's mom added. Thank you all. Cindy G. |
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Forum Moderator Grand Wizard  |
Welcome, Cindy, I'm glad you found us and feel you belong.
Has anyone given you the link to preventive medications? Your daughter has tried a lot of options, and I don't know how her age may limit her options at this point, but there are many, many meds being used for migraine prevention. You might want to print out the list and take it with you to your daughter's doctor. I'm so sorry about what you and your daughter are going through. We will be here to support you as best we can. Migraine Preventive Medications - Too Many Options To Give Up! Nutcracker Forum moderator  |
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Sage |
I'm blessed that my son doesn't appear to inherited my migraine disease. He's 21 and doesn't have headaches, so I don't have any personal experience.
I'd think that 14 is right on the edge of where adult and pediatric neurologists part ways. Has she started her period yet? That might be a marker. My son matured early. He started shaving when he was about 12, and was nearly 6 feet when he was 15. It felt strange to take him to the pediatrician's office, with all the toddlers and infants and new moms. I don't think anyone knows why a certain triptan works for some people and not for others. I didn't get a whole lot of results from Amerge or Axert, but I love my Imitrex. Has your daughter tried all 7? They each work on different receptors. I've never had any experience with an in-patient program, but perhaps someone else has. I've thought about it but haven't gotten to the point of doing it. It would be way out of town for me. There aren't any clinics in Mississippi. Traveling to see a specialist can be worth it. For several years, I flew from central Mississippi to Chicago. I just started seeing a specialist in Nashville. It's a hard 8-hour drive, so I fly. There aren't any direct flights, and I have to go through either Dallas or Atlanta. I spend two nights, the night before the appointment and the night of the appointment. Teri drove 8 hours from West Virginia to Philadelphia to see her specialist and stayed overnight. I'm glad you've found us. Your daughter is welcome to post. She'll probably get drowned in concerned moms, but she might enjoy asking questions. Gretchen in Mississippi |
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Grand Wizard |
Hi Cindy, and welcome. Glad that you found us!
Nutcracker gave you a good link to our list of migraine preventives. I'll also suggest you take a look at our article about the different types of migraine medications. Preventive, Abortive and Rescue Medications - What's the Difference? Welcome again!  -MJ my blog: http://rhymeswithmigraine.blogspot.com/ Why do I capitalize Migraine? Hope can grow from the soil of illness! http://www.InvisibleIllness.com "What will you do, if it does not turn out how you expect?" "I do not know. Nor shall I worry about it until it happens. I still have an action left to take; until I have exhausted it, I shall not despair." - Robin Hobb, Assassin's Quest |
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Fledgling |
Thank you all for your thoughtful and informative responses. I would like to rephrase my question on triptans. It was reading the lists of meds originally and about the difference among the meds that prompted my original question. My daughter's migraine does not go away. I would then suppose that abortives would be the most useful meds. She did try two triptans, but they didn't work. WHy? Why hasn't her neurologist suggested more? Is there something about a chronic migraine that responds only to preventative meds?
Thanks. Cindy |
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Community Moderator Guru  |
Hi Cindy!
Welcome to you and your daughter!!! I'm so sorry that you and your family are going through this. I am very happy to see you here though. Migraine is a very "lonely" disease I've found, so I'm glad you've made it here and that you and your daughter can read and post together! You said that the triptans are not working. Do you know what kind of Migraines your daughter suffers from? I'm just asking because as I'm sure you know, certain migraines such as Hemiplegic Migraine, it actually not to be treated with triptans. You also mentioned quite a long period of pain that your daughter has been in. Have you been treating her with any over the counter medication for the migraine such as Advil or Exedrin? This can lead to Medication Overuse Headache - which is when we take what can help us, too often. Also are you familiar with Status Migrainous? Its when a Migraine attack lasts longer then 72 hours with no breaks (less then 4 hours) in pain. Welcome again. I hope I have not bombarded you with too much info! I wanted to make sure I covered everything I saw in your messege! You are among friends here, as is your daughter. I'm sure some of her friends probably don't understand what she is going through. We do. I know it's hard. Please - if your daughter wants to have an account on here - we are family friendly! I hope today is a good day! If you have any other questions or concerns, feel free to ask away!!!! We look forward to getting to know you and your daughter!!  Eileen Gray Community Moderator eileen@helpforheadaches.com "The most authentic thing about us is our capacity to create, to over come, to endure, to transform, to love and to be greater then our suffering." - Ben Okri Please donate!!! Click below to donate to the AHDA - THANK YOU!!! http://www.networkforgood.org/pca/Badge.aspx?badgeId=102755 my blog: http://fireinmybrain.blogspot.com |
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Sage |
Hi Cindy!
I'm so sorry you and your daughter are having such a tough time! I am a chronic migraine sufferer--I get into LONG periods of Status Migrainous (i.e., migraine that just won't go away!). My HA specialist explained that sometimes a person gets into a migraine and their body just doesn't seem to want to let go of it! In those cases, sometimes aggressive IV interventions are needed to break the cycle. Some people try steroids at home in pill form as a cycle-breaker, too. And some members have had luck with the medication Zyprexa as a cycle breaker at home. Of course, all of these would ONLY be done with your doctor's approval and supervision! I've been inpatient for migraine a couple of times. One visit was successful and one was horribly bad. (The bad visit was with a doctor I "fired" some time ago...) From experience, I know that the doctor admitting your daughter MUST be involved in her case when she's in the hospital! If your doctor is not actually doing the hospital visits, then I would INSIST that the visiting doctor report into her regular doc daily. When you're inpatient, you receive IV medications around the clock in an effort to break a migraine cycle. Medications used for this vary, but some I know of are DHE, decadron and phenergan. Sometimes the doctors will give a medication that will make your daughter very sleepy. Please don't just assume that because she's asleep, she is feeling no pain! I am a migraineur who feels pain A LOT even though I'm sedated! Please make an effort to wake her long enough to learn whether her pain level is decreasing. You may want to ask the hospital if they can be sure your daughter has a quiet, dark room to stay in. (Some hospitals have wings devoted to HA and migraine care and there are quiet, dark rooms for every migraineur.) During my "bad" hospital stay, I was in a room with an influenza patient who was hard of hearing. She had the lights on all night and blared the TV all day! I BEGGED for the doctors to send me home! It was like  on Earth!When your daughter is inpatient, be sure the doctors are making changes to her IV meds if she is not feeling relief. Also, be sure her primary specialist is consulted and made aware of ANY changes that are made. I guess what I'm saying is that you MUST stay on top of her care and be sure she's improving! I hope this info helps!  for you both! jenny |
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Fledgling |
Wow. I have lived 16 months in the dark without all this info and help. THank YOU!! OK... Breezy's headache has been called transformed migraine or chronic migraine. Her headache pain is moderate to severe. Lately she has been missing substantial amounts of school because of more severe pain accompanied by eye pain, dizziness and nausea. So, status migrainous? i don't know. She has never gotten into the habit of using over the counter meds as we hooked up with a pediatric neurologist specializing in headaches pretty early on.
Her Dr. is recommending the hospital stay and judging from Jenny's great info, it sounds like it could be helpful. (My husband's recent death has scared me off hospitals some). The info on what to look for and ask for eases my mind so so much! Cindy |
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Grand Wizard |
Cindy, I'm glad we could help you. Please let us know if you have any other questions - we're here to help you and your daughter!
-MJ my blog: http://rhymeswithmigraine.blogspot.com/ Why do I capitalize Migraine? Hope can grow from the soil of illness! http://www.InvisibleIllness.com "What will you do, if it does not turn out how you expect?" "I do not know. Nor shall I worry about it until it happens. I still have an action left to take; until I have exhausted it, I shall not despair." - Robin Hobb, Assassin's Quest |
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Forum Moderator Grand Wizard |
As to the other part of your question, why the doctor has not recommended trying the other triptans, I doubt we can answer that. Please ask the doctor. He/she should be willing to explain. Just because your daughter does not respond to one (or two) triptans does not mean she would not respond to one of the others. You really have to try each one.
The doctor may have a good reason for not trying the other triptans, but you have a right to know what it is. Take care. So glad to have you on the forum. Nutcracker Forum moderator |
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Novice |
Hi Cindy,
I am 15 and I see an adult migraine specialist. I think it probalby depends on the doctor but I am sure there are some that would see your daughter. I went through almost 3 years of migraines 5-6 days a week. I understand what your daughter is going through. Have you tried anything like acupuncture or chiropractics? I only ask because acupuncture is what finally worked for me. I was never able to get a triptan or a preventative medicine to work for me. My doctor said that the triptans didn't work because during a migraine I got nauseaus and my stomach did not digest the medication I took. He recommended an injectible triptan or taking a antinausea pill before I took a triptan. Different preventative medications work differently for different people. For me, the ones I could take with out getting sicker didn't help and the other ones made me so sick I could not stay on them long enough to see if they would help. I hope you find something that helps your daughter and that she can finally get some relief! Michelle |
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Master |
Hi Cindy
Welcome to the site. I'm so sorry to hear about your daughter. In addition to all the great info on this site, I would highly recommend Teri's book. It is an excellent resource. My son went through a lengthy migraine attack as well. We kept trying different meds with different doctors. Sometimes we could break the cycle for short periods with steroids. Eventually, the bad cycle stopped. Unfortunately, this week he is in status migraine. Status migraine is often caused from medication overuse, but not always. I never allowed my son to take too much medication, but it still happened. I think the most frustrating part of migraines is that there is so much that is unknown. Some things work great for some people, but not for others. Sometimes drugs stop working. My son has used many different triptans over the years. Some of them eventually stopped working for him. Everytime we tried a new one it did help for a period of time. If you haven't tried them all, you should ask your doctor for another one. I don't think triptans are very effective for status migraine. They certainly didn't work for my son. They do work for him with a normal migraine. Andrew had 2 inpatient stays. He was inpatient in Chicago. If he had to go in again, I would love him to go back there. They have an all headache floor. They use the drugs all the time. They know what to expect. The treatment was not successful though, but I felt very comfortable there. My son also had a one night stay at a children's hospital. He had a reaction to the medication. I didn't feel like the nurses or residents there in the night knew much about the drug or what to expect. That made me a bit uncomfortable. We could not continue that treatment. I would find out what drugs your daughter will get, and read about them before you get there. Then you will know what to expect if anything comes up. You are the best advocate for your daughter. (Andrew had DHE at both inpatient stays along with a steroid.) I think an adult specialist is a good choice at this age. We have seen an adult specialist, but we currently have a pediatric specialist. We have traveled all over to find the right doctor for us. We currently have a 4 hour drive to our specialist. Please let us know if you go for an inpatient stay. I hope your daughter is feeling well today. Jean Ann |
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Novice |
Cindy, I hope that you find a great place/doctor for your daughter. It is so frustrating to watch someone you love suffer. My thoughts will be with you both. I have a daughter who has had periods of status migrainous as well as periods of chronic migraines begining at age 4. She is now 6 and doing much better (but seems to have rough times during the spring). I hope we can give you support and good advice on this site.
Lynn |
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Newbie |
How did your son react to the DHE? Our first hospital visit consisted of Depakote and Reglan, but now going on three weeks out of the hospital and his pain is steadily increasing (7/10). If we have to go back we are considering DHE. TY in advance.
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Master |
Hi
Welcome to the forum. My son had the 9 dose DHE IV treatment. I know a lot of people get sick from it. He was given zofrem for the nausea before each IV. Our doctor used .5 (the amount he gave in each IV) for the first and last treatment. He used .75 for 2-9. My son got extremely sick at dose 8. He started vomiting and diarrhea. His stomach was a mess after all of this. When we got him our pediatrician put him on zantac to help heal his stomach. At some point during the hospital stay he felt headache free. At that time we were told he had chronic daily headache with migraine. That relief was short lived. We did use DHE injections at home for a 2 week period. That really did help break his cycle. We used a small amount during that time. Of course, he had a severe rebound migraine when we stopped it. He also had DHE in Dupont Children's Hospital in Delaware. He began experiencing some severe arm pain. I made them stop the IV. It was in the middle of the night and a resident was there. She didn't know much about the drug. My son was the only patient in the hospital receiving that drug. The specialist was there the next morning and she agreed that he could not continue on with the DHE. I hope that helps. DHE works wonders for a lot of people. We have had both good and bad experiences with it. Good Luck Jean Ann |
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