Migraine

My daughter has been having chronic migraines since she was 5 years old she is now 12. They have caused her huge pain to the back of her head, drops, confusion lasting for days, memory loss, dizzy and have been ####.

This week my daughter has been put into emergency for what they thought was seizures but they are now telling me it is part of basilar migraine. The symptoms are she is losing consciousness that is lasting any where from 30seconds to 6 minutes. During these attacks they have reported that she has right side weakness. When she comes out of these attacks she has no knowledge that they have even happened she continues on with her conversation.

Has any one else experienced these symptoms. Can they slip into comas? My local doctor has never heard of a migraine causing this it is the neurologist that has diagnosed.

My daughter is on the following drugs to cure this problem. Valproate and Topamax.

Any thought or suggestions this is so scary for a parent.

Edited by moderator: Oops! Please remember to use family friendly language.

Hello Mouse and welcome to the forum family! It's great to have you here! When you have a moment, please stop by the Start Here Folder for important information and guidelines about the forum. Also, a great article to take a look at is:

Learning About Migraines - Where to Start

My heart goes out to you! I can only imagine how difficult it is to watch your daughter suffer with these symptoms. I think it may be a good idea to get her to a Migraine Specialist so they can help treat this form of Migraine:

Migraine and Headache Specialists - What's So Special?

I'm going to give you some links to some articles that I think you'll find helpful and will give you some answers to your questions:

Basilar-Type Migraine - the Basics

Topamax Profile

Welcome again and please let us know how your daughter is doing.

Thank you, so much for the links. On an update my daughter is still in an out of hospital.

We are getting flown in the next couple of days to the city for more tests.

Her migraines are really bad and the pain in her head is just sad to watch a child go through. My daughter never had migraines until she had meningitis when she was 5. From that age on she has had them on a constant basis. Her whole schooling has been affected and her hospital visits have been a lot.

MRI is always clear and they are still saying migraine is the cause.
EEG are also always clear.

If their is any one reading this that have lived through this type of migraine or similar please any tips would be appreciated.

Currently she is having these attacks that can last up to 20 minutes non responsive (unconsciousness). When she comes out of them she is perfect and continues on as though it never happened.

The doctors tell me just to look at it that she is in a happy place where she can get away from the pain.

Thank you for any one that is reading this and any suggestions would be greatly appreciated.

Thanks

Hello to both you and your daughter, Mouse.

I've had a small handful of migraines starting at the back of my head that I strongly suspect have been basilar-type migraine. I did bring it up with my former neuro, and he said it was possible, but never really did firmly commit to a diagnosis, because it could've just been a variation on my more garden-variety migraine, too. I've never lost consciousness with any of those suspected basilar events. I have blacked out with some of my other migraines, though not in some time. Usually, though, it's a short-lived blackout for me, and I'm only out for a few seconds.

I'm sorry your daughter is having such a rough time with this. I really wish kids didn't have to live with and deal with migraine, particularly when it has to manifest itself in such ways that are so hard for parents to watch. My heart goes out to both of you.

Hi mouse,

Welcome to MyMigraineConnection.

Sounds like you guys have been through an awful time. I'm sorry you are going through this.

Familial Hemiplegic Migraine (FHM) is a rare form of Migraine disease often starting in childhood that is difficult to diagnose. It can often be confused with other vascular conditions, stroke or epilepsey. It is vital to have a complete medical exam and history taken to help with a diagnosis. Some of the symptoms may include confusion, loss of consciousness or even profound coma, hemiplegia (paralysis on one side of the body)to name a few.

It may be time to consult a Migraine and headache specialist. It’s important to note that neurologists aren’t necessarily Migraine and headache specialists. Take a look at the 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 information helps, please let us know what else we can do for you ok?

Hi,

I don't know much about migraines at all, but have you ruled out a Chiari One Malformation? I think it is a rare cause of migraines, and it happens when the brain doesn't quite fit inside the skull properly. It may cause low blood pressure, and episodes of fainting.

Hi Kiti,


Welcome to MyMigraineConnection!

When you get a minute please read our START HERE folder for information and guidlines on our forum policies.

Learning about Migraines is another good place to read up on Migraine disease. You can find that link HERE

Hello I would just like to update everyone and I hope it is ok to continue on this thread.

My daughter still has the terrible headache/migraine that I explained in early post but now my daughter has developed a seizure disorder that looks like clonic tonic and was put in an induced coma and on life support. They than brought her out of the coma and after three hours the seizures started again. This time she was wired to an EEG and it came up non epileptic. These seizures continued every night for three weeks straight as she went to sleep. It breaks my heart as a parent to watch and to hear that this is supposed to be caused from stress. As a parent how could I have missed this?

My daughter has been reviewed by the psychology team of the hospital and they are telling me that they do not agree with the neurologist as my daughter is not stressed and they feel that their be an organic cause. They just can’t find it.

My daughter tells me all the time that she is not stressed that she has parents who love her, great friends and loves school. Yet she continues to have seizures and terrible headaches.

Please does any one have any advice? As parent watching what can I do? Has any one had seizures that are brought on by long term chronic pain?

I am currently trying chiopractic, and also doctors are lowering her long term drugs of valpro and topamax to make sure that medicine interation wasn't to blame. They would not address the issue of bad migraines yet I believe so much of this is the cause.

Oh my dear, I am sitting here crying as I read your post. I had been through a terrifying time with our boy years ago, and my heart goes out to your family and your child. I wanted to write to you because I read that you are trying a chiropractor. Let me share something with you that's important. Shop around. Not every chiropractor is the same, has the same 'specialities', diagnoses the same way. I know this because I spent a year trying many. You know, it's odd...people (like my mom, and my mother-in-law) stick with physicians who do nothing for them, they just have this comfort level, I guess. Try one chiropractor who happens to be lousy, and it can turn you off of the entire practice forever! Anyway. Through lots of trial and error, I found one who specializes in Atlas Orthogonal. Here in NJ, there are only about 8 doctors who are actually board-certified in this speciality. We were all migraine sufferers, me, my husband, my son. We don't like meds, nothing religious or anything, just would rather not. Let me tell you something: one set of x-rays, an exam, an adjustment that I didn't even feel, and for the first time in YEARS, no headache. Believe me, don't believe me, I am just saying that this guy did the trick. I found out he suffered from a lifetime of migraines, about 25 years, and when he was cured by the same method, he dedicated his life to helping others. You can call me if you want, or write. I don't want to go putting his name in this post since I don't want anyone thinking I am advertising him. He deals with kids all the time. He is a lovely, patient man, who has opened his office on his day off to see any of us. And I even got my mom to go see him. And my dentist and his twins. Go figure. Good luck, I hope things are looking up dear. Lydia

Take Heart, Mouse!

It took our first neurologist months, x-rays, and a 24-hr EEG (that actually took 3 days) to decide that my daughter's seizures were actually being caused by a pinched nerve at the very base of her skull.

My daughter and I are both migraineurs. Kat's pony had thrown her in July, & she had landed on her hard-hatted head. The seizures started soon after. She almost always went right into a migraine right after a siezure.

She and I had been going to this neurologist for migraine treatment anyway, so he added siezure management to Kat's treatment plan. As I said, it took months for him to figure out the cause. But, as the nerve healed, the siezures slowed, then stopped altogether. No permanent damage.

Kat was 15 at the time. She is only one case - anecdotal. But, Maybe this will give you a little hope for your daughter.

BTW, Kat is now 25, and has been migraine-free for about 2 years.

Rebecca, The Island Mama

Thank you so much to all that replied and the advice that was offered. I am not sure if any one interested but I would like to do a little update. The seizures have stopped and I hope that they never return. Her diagnoses at the moment are still basilar migraine with???. The seizures stopped when all the medicine were lowered.

My daughter has had great success at the chiropractors and the pain of the daily headaches has stopped. Her migraines are now manageable and she gets approx 2 only a month with vomiting etc. The falls have stopped and unresponsive has also stopped. How much of this was pain related or medicine related I will never know…

Since lowering of the drugs the only problem that we have have left is that she sleeps all the time. Latest thoughts are maybe she may have narcoloepsy and possible cataplexy. Both these disorders can look like seizures but not be. Does any one know it migraines/headaches can go hand in hand with narcolepsy/cataplexy? I have the official sleep test in the future.

My daughter is only 13 years we have been through so many tests and I hope that one day we get some answers.

Mouse,

Thank you so much for the update on your daughter. I'm so relieved and happy to hear that things are starting to look a bit brighter for her. I was able to find the following article on our sister site MySleepCentral.com and it listed Migraine in association with Narcolepsy:

Narcolepsy - Prognosis

I hope this will help you get started. Good luck and please continue to keep us posted.

I'm thrilled that your daughter is seeing such great levels of relief through her work with the chiropractor. That is very good news. Getting a definite diagnosis is great, too. Here's hoping those seizures stay gone for good!