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14 y/o day 5 if migraine
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My child has never experienced a headache Tylenol or Motrin would not cure until five days ago out of nowhere. No food changes, family trauma, nor has he eaten anything from another country or been out of the country.

He simply just woke up with it and since it has not broken even for a moment in 5 days. We had 3 ER visits, none of those medications but a dent in it. He saw neurology yesterday who admitted him for further testing. MRI and spinal tap were negative for meningitis. All other tests show nothing. Still medications are not working. He was given these medications in this order Fioricet, Reglan, Benadryl, Imitrex, Toradol, Solumedral (sp), Zofran (given before this last medicine so he did not get sick) and is currently on DHE.

The pain has gone from a 10 to a 7 and never lower than that. Then it spikes back up to a 10 two hours later. DHE was started nearly one hour ago via IV and so far no relief at all.

Im so frustrated we do not have any answers and nothing helps to relieve him and no one knows why all of a sudden he woke up this way and five days later is the same way absolutely miserable.

At this point we really do need a Dr. House type of doctor to help figure this out and give him some relief.

Any suggestions or experience on further testing and or medications to try is appreciated.

Nearly 10 years ago I posted on a forum for severe pediatric scoliosis and found out about a then investigational surgery since approved by the FDA that changed my middle child's life when five other surgeons gave,me little to no hope of a "regular" life.
 
Posts: 4 | Registered: 09-13-2012Report This Post
<Nancy Harris Bonk>
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Hello and welcome to our forum family! Our goal is to provide everyone with the information and support that we all need to manage our Migraines and/or headaches. To that end, we consider this a “safe harbor,” where nobody tries to sell us anything, and we all use “family-friendly” language so parents are comfortable letting their children read the forum with them.

Please take a few minutes to review our policies and guidelines along with the other information in the START HERE folder. For information about Migraines, a good article to begin with is Learning About Migraines - Where to Start.

I'm sorry your boy is going through a rough time right now. You mentioned he has had "headaches" before this episode and had been able to take over the counter medication (OTC) to relieve his pain. Do you know how often he was (is) taking OTC? You see, if we take any type of pain medication OTC like Advil or Tylenol or prescription more than two or three days a big part of his problem may well be medication overuse headache (MOH), aka rebound. You can read more about MOH in Medication Overuse Headache: When the Remedy Backfires

Has he been diagnosed with Migraine? Did he by chance have a cold or virus when his "headache" started? Sorry for all the questions, but the more information we have, the better we will be able to help you. There is a type of headache called New Daily Persistent Headache, NDPH, which is no fun and your son may not yet meet the criteria, but is might be something to look into. Let me give you that information; New Daily Persistent Headache - The Basics

Something else to think about is this, not all neurologists are Migraine specialists and not all Migraine specialists are neurologists. And what's more neurologists may be fine doctors, but have a hard time being experts in one area. This is because they treat so many conditions like MS, epilepsy and stroke. A Migraine specialist is just that, an expert who treats one condition - ours - Migraines and headache disorders. When you get a chance, take a look at article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists

I hope this helps, let us know how he is doing, OK?
 
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I do not believe it is medication overload as the other times he had a headache are very few and far between. Also I am the one to always hand out medication. I would say previous headaches may 2 to 3 times a year. Outside of what is going on now, he is a very healthy child. The doctors kept mentioning his low heart rate but he is a runner so that is normal for someone who runs cross country.

He has not been sick with a cold, allergies or anything. Doesn't have any rashes or bug bites. Before Sunday everything was normal. The hospital asked of any family trauma or changes that would stress him. His grades in school are awesome, he has tons of school work but always has because he takes AP courses.

I will look into both the NDPH and see if I can find a migraine specialist in our area. So far that has been the diagnosis but then the neurologist thought it may be something else because nothing has worked in so many days to take the pain away. He can't walk on his own but says that is because he is so dizzy and vision is blurred when he gets up. The nurse just paged the doctor again because since taking the DHE he says the pain has gotten worse.

Thank you for the information.
 
Posts: 4 | Registered: 09-13-2012Report This Post
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Have you asked them about trying Magnesium sulfate by IV? It was pioneered ( I think) by one the migraine clinics down in Texas. I have personally tried a lot of the meds you mentioned he'd been given. Not the DHE though, and none of those things work for me if the pain gets that high. Magnesium sulfate though? Will drop my pain 4-6 notches in an hour. The ER tend to scratch their heads and look at me like I've lost my mind when I ask for it, but hey it's not a narcotic and so they don't object too much.

I'm not a dr., just a lowly biochemist. Obviously you should discuss this with your son's medical people, but it's a thought. I think it's also a relatively low risk treatment.


Amy
 
Posts: 360 | Location: Virginia | Registered: 06-22-2009Report This Post
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Is DHE steroids? If not, have they tried a "steroid pack"? Someone else on here (I think it was) talked about that being the only thing that helped them in the ER. Hopefully, it wouldn't cause him to not be able to do cross-country, but his getting well is more important regardless.

I hope he gets better really soon!!!

And, hey, "it's not lupus". Wink (I hope I got that quote right, as I don't watch that show. I was told about it by someone else.)


--:: Light-triggered constant silent migraines helped by migraine glasses and nortriptyline (preventive). ::--
 
Posts: 69 | Registered: 06-16-2012Report This Post
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DHE isn't steroids. DHE is short for dihydroergotamine mesylate, which is an ergotamine med.



Dragondrool
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Posts: 6478 | Location: Montana | Registered: 01-11-2007Report This Post
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I surely appreciate the replies and suggestions. Wow mag sulfate would have never in a million years crossed my mind but I have jotted that down in his journal for future issues. I was on that menopause in a bottle (my name for it because of the hot flashes) with my third pregnancy.

The only steroid he had was Solumedral (sp) which did nothing. Running is not on my mind right now. We have to focus on his health, there will always be ither cross country or track meets in the future

Today seemed to be a turning point for him. I finally saw him smile, he walked to the restroom unassisted for the first time in days and he said once the DHE.side affects wear off his pain is at.a level 3.

So it seems the accumulation of the DHE is working though it has icky side effects. He did vomit last night with his first full dose even with Zofran pre-medication. Today he wad pre-medicated with Reglan and Zofran prior to the treatment. It now causes him to still have nausea and burp for 20-30 minutes after receiving it but no vomiting. He just completed his 5th dose this evening so has 4 more to go.

If things continue to be like today he can be discharged Sunday. Nortriptyline will be goven tonight to see how he tolerates it before sending him home with it.

He is not aware of his aura yet because this came on so suddenly and in such a severe nature but I now have the journal. I do remember him complaining about a week before this began that he could not tolerate his contacts so he opted to wear his glasses for a few days, so that may be a sign to look out for.

Im learning more about this daily to assist him as best as possible.

Again thank you for the replies. The suggestions have given me more information and prepared me more for when the doctors come around for morning and evening rounds on what questions to ask.
 
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quote:
Originally posted by dragondroolHOST:
DHE isn't steroids. DHE is short for dihydroergotamine mesylate, which is an ergotamine med.


I can see why it needs the abbreviation! Razzer Gotta love long med names.


--:: Light-triggered constant silent migraines helped by migraine glasses and nortriptyline (preventive). ::--
 
Posts: 69 | Registered: 06-16-2012Report This Post
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So glad to hear your son is doing that much better!! Such a relief! I hope he continues to get better and that the nortriptyline preventive works for him.

I currently take 40mg of nortriptyline (after titrating up, my starting dose was 30, but I later had to up it to 40 [doc said I can up it as far as 50 before the next appointment]) and it is definitely helping keeping the migraine away some days and others keeping the symptoms relatively mild. I haven't had any side-effects on it, which is a miracle since I've had bad side-effects to lots of other meds in the past. Everybody is different, though, and I know some ppl have had side-effects from it and for some ppl it hasn't worked for them. All the migraine meds are wait-and-see, since none help every single person. Make sure the doc tells him what time of day to take the meds, as my doc has me taking them at night instead of in the morning (good thing I read the label on the pill bottle, as I had just assumed it should be taken in the morning - night works better for me to be consistent with time taken, though, so it worked out well).

I set up a permanent daily alarm on my cell phone to go off at my med time so I don't forget to take it. If I think I'll be out late at a show/event/etc., though, I have to remember to take the pills with me. I take them at 11:30p, so usually am home, but I've had to take it late when out at two shows and had to bring the pills with me to a wedding (didn't get home until 1:30a, so am glad I took them with me!). Of course, your kid hopefully won't be out that late! Wink

I hope that when he is feeling better, your son will want to research migraines so he can know more about what happened to him, as well as want to keep a journal to see if he can figure out his trigger(s) - although, I sure hope this type of episode never happens to him again!


--:: Light-triggered constant silent migraines helped by migraine glasses and nortriptyline (preventive). ::--
 
Posts: 69 | Registered: 06-16-2012Report This Post
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He was discharged today. 5 days inpatient on his first admit ever, he was beyond ready to go home. He woke up and said "Where's the doctor, Im ready to go home". His dosage for the Nortriptyline is 20 mg in the evening but if needed we can increase it. He still seems to have some light sensitivity. He wants to return back to school tomorrow, I would rather he have a full day of rest at home first so we will see.

Hopefully these will not be a frequent occurence for him. For any future ER visits I have the mag sulfate noted to ask for that. Has anyone tried Botox? Not something I would immediately ask for as he hates all needles but would like to have input on how that has worked for those who use it for migraines.
 
Posts: 4 | Registered: 09-13-2012Report This Post
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That's so good to hear that he is home! I hope the nortriptyline works for him. Remember, it may take several weeks to start to work, so if he has another episode, it doesn't necessarily mean it isn't working.

I hope he rests before going back to school, but that is great that he wants to get right back into things! He must be a good kid. Smiler

I meant to mention this in my last message, but realized I forgot it: You said he doesn't recognize his aura yet. Does he have migraine with aura? Or were you unaware that not everybody has aura before the migraine? I wasn't sure, so just figured I'd mention that, since some people do think that everybody gets a big aura to warn them plenty of time before the migraine hits. Migraine without aura is more common than migraine with aura. There are other types of migraines, too.

Hopefully, your son will be good to go and not have another episode any time soon!


--:: Light-triggered constant silent migraines helped by migraine glasses and nortriptyline (preventive). ::--
 
Posts: 69 | Registered: 06-16-2012Report This Post
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I hope he's doing much better.

The not tolerating contacts thing could very well have been a sign. I've had many attacks that were heralded by visual issues. I might get a sensation like I'm seeing a brief movement out of the corner of my eye. My eyes might feel a bit funny in a vague, general way, or might blur out a bit. Usually if I get visual aura it's a light flickering. Only twice have I experienced the zig-zag fortification scotoma that they like to show in migraine overview articles.

As for your son "not recognizing his aura yet", it might be that he's having migraine attacks without aura. Even if the not tolerating contacts issue was an aura, he could be having a mix of attacks, some with aura, and some without.

It's been a while since I've seen percentages, but fewer people have aura than don't have aura. I believe the last numbers I saw said that only 20-25% of migraineurs have aura. It could very well be that if he's not able to pinpoint any kind of aura for any particular attack that that attack didn't involve any. I'm glad you've got a diary going, because that's going to be great in the future. I find that my ick log is a great tool for helping to focus my thoughts about specific attacks and start to see aspects of attacks I might ignore. After a while, I'll start to see patterns emerging, and that guides treatment, sometimes in a big way.

I've never had Botox for migraine. While I'm not sure, my *guess* is that they wouldn't consider it very early as an option for a 14 year-old. They're likely going to want to exhaust a list of options that have been used more with children, where there's some track record of efficacy, side effects, and so on. Botox for adults with migraine is fairly new, and you can bet it hasn't had much if any study for use with children. My guess is that it would be a "back pocket" med, saved as a last resort kind of thing. Of course, I might be mistaken about that.



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Posts: 6478 | Location: Montana | Registered: 01-11-2007Report This Post
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