Migraine

Hello all,
I am looking for a mother/family that may be going through the same thing that I /family is experiencing.

On January 10th 2008 my 18 year old son started to have problems. One day out of the blue my healthy child went into a catatonic state while sitting in class, I thought someone had drugged him with something.

To shorten a very long story….. He continued to have these episodes, we had every test ran on him with no answers. He began to have headaches with these episodes so we took him to a migraine specialist. He was diagnosed with migraines with aura. His auras are so sever and hard to deal with.

While having an aura he will loose complete muscle control not being able to hold himself up, can not move and is unable to speak. He remains fully conscious and can hear and see everything that is going on around him. His auras last between 5-10 min, a migraine may present before, after or sometimes not at all. He also has migraines without aura.

We have not been able to identify a trigger however the episodes have decreased significantly since he has started taking preventative medication. He is on 200mg of Topamax and is just starting on a low dose of Nortriptyline 10mg tonight after having 2 auras in the past 2 days.

The one today hit him fast and hard without a warning; he just missed hitting his head on his way down. He uses Imitrex as an abortive. He is getting ready to graduate and is supposed to go off to college this fall; I am so worried about him being on his own with such a disabling disorder.

Is there anyone else that is experiencing anything similar to what we are going through?

Thanks
Kathy

Edited by moderator, please break up paragraphs for easier reading.

What a frightening experience!

I'm not sure what kind of doctor your son sees for his migraines, but you need to get him to a migraine specialist. See this list:

Patient Recommended Migraine and Headache Specialists

Doctors other than migraine specialists may never have seen a case like your son's.

I'd encourage you to have your son sign onto the forum with his own account, and read, learn, and post here. If he has that experience, it may help you feel more secure about his ability to manage his own health care. I'm sure you will worry anyway, but the more confidence you have in your son's knowledge of his disease, the better.

Take a look at this article to get you started on further learning about migraine disease:

Learning About Migraines and Headaches - Where To Start

Welcome to the forum. We're glad you found us, and I hope you will come here often to learn, and to give and receive support. Best of luck to you and your son.

Nutcracker,
Thanks for your reply.
We are seeing a wonderful headache specialist that I found from the link from this site.
We had our first appointment March 5th. My son Chris had an aura and fell over right in front of her. She said that although his condition is rare she has treated it before. It usually happens in teenagers and he should grow out of it however, it can be hard to treat.
I have tried and tried to get Chris to read everything about migraine but I don't think he wants to deal with it, teenagers ya know, and hopefully he will when he realizes that he will have to take care of himself someday soon. I on the other hand have read everything I can find about migraines and auras including everything on this site. I am just looking for someone that may be experiencing anything close to what we are someone to connect and share with.

Thanks again
Kathy

Welcome to MyMigraineConnection.

This should be an exciting time for you and your son, not a scary one. I'm sorry you all have to go through this.

Migraine is a genetic neurologic disease, so I'm a little confused what the doctor is referring to when she says most teenagers grow out of it.

There is a rare form of Migraine disease, Hemiplegic Migraine. Some of HM's symptoms include true motor weakness, mimic stroke, epilepsy and other conditions and can be challenging to treat. We have information on itHERE.

An accurate diagnosis is vital. Let me know what I can do to help.

Hi Kathy

Welcome to the forum. I'm sorry to hear about your son. It sounds very scary.

I also have a teenager, 14. He isn't interested in reading about migraines either. I try to tell him about a lot of the information that I know.

My son has chronic migraines, but he doesn't deal with anything like what your son has been going through. I know how stressful it is to deal with a child with chronic illness.

What is your son's diagnosis?

You might want to post a question in the question and answer section to get more responses.

Jean Ann

Welcome to the forum family Kathy and Chris

I'm sorry you have the need to be here but I'm so glad you found us. You've come to the right place for information and support. Everyone here is compassionate and understanding.

I'm so glad you guys are seeing a specialist and they have started Chris on preventives. Does he keep a migraine diary to help track his triggers, medications or any patterns to his migraines? I enter mine into Excel so it's easy to keep updated.

Again, welcome to the forum. I look forward to seeing you around and if you have any questions, just ask away!

Welcome to the forum Kathy!

Looks like you've gotten some good advice already.

I'm sorry for what you and your son are going through. Getting a good doctor that you can work with is vital at this point. It will really help in managing this disease.

Let us know if we can help you with anything.

Kathy,

A couple of points:

1. Younger children are more likely to "outgrow" Migraines than "children" your son's age. Truthfully, that's not always very accurate. I started at 6. Guess what? Still going strong with Migraines.

2. Migraine with aura? Was hemiplegic Migraine discussed? TRUE motor weakness occurs ONLY with hemiplegic.

3. He'll still be your son when he's 60, but he is for purposes of treatment, an adult. I don't know what to suggest to get him to read. Have you told him this is an incurable disease? Let him know that the doctor isn't necessarily right about outgrowing his Migraines, and that if he doesn't take care of himself, he's going to be sorry later in life. Not too long ago, studies showed that men with Migraine are at higher risk for stroke and heart attack. Hate to say it, but sometimes, we have to scare some sense into them.

Would you do me a favor please? Please email me at the addy in my signature and tell me who this specialist is? Thank you!

quote:

Originally posted by KathyMcMom4:
Nutcracker,
Thanks for your reply.
We are seeing a wonderful headache specialist that I found from the link from this site.
We had our first appointment March 5th. My son Chris had an aura and fell over right in front of her. She said that although his condition is rare she has treated it before. It usually happens in teenagers and he should grow out of it however, it can be hard to treat.
I have tried and tried to get Chris to read everything about migraine but I don't think he wants to deal with it, teenagers ya know, and hopefully he will when he realizes that he will have to take care of himself someday soon. I on the other hand have read everything I can find about migraines and auras including everything on this site. I am just looking for someone that may be experiencing anything close to what we are someone to connect and share with.

Thanks again
Kathy

Welcome Kathy and Chris!

I'm sorry that you both are going through all this. The hosts are right, it would be interesting to get a more accurate diagnosis.

I can tell you my experiences with Hemiplegic migraines. They can be somewhat similar to what you have described. I will not be able to hold myself up, I will sometimes go into siezure like activity, not full on convulsions, but more like twitches and mild jerks. Sometimes when I do this I am fully coherent with whats going on, but I cant speak or move or anything. Other times I dont remember the episode at all afterword.

I also get stroke like symptoms where my entire left side will go paralyzed. This can last days even a week or more after for me. Sometimes I black out. Frequently a severe HM episode will leave me in a daily migraine phase for a month or more.(these daily ones arent HM they are migraine with aura)

Hope this helps!
to you both
Tawsha

Tawsha,

Thank you so much for sharing. I would love to ask you several questions like
How old are you?
How long have you been experiencing migraines?
What kind of meds are you on?
Do you have any warnings before you have an episode?
Do you drive?
Are you able to work or go to school?
Are you able to live alone or go any place alone?
Any tips on how to live with this, emotionally?
These are just a few that have popped into my head.

Thanks in advance

Kathy

Kathy,

First off I am 31. I have had migraines since I was a teen, but I had my first hemiplegic one about 8 years ago. At the time the drs thought I had a TIA or Bells Palsey. They werent sure. I now know that was a HM.

I take Depakote for preventative, Midrin and Gelstat Migraine(when I have to drive and cant be loopy!)

It is often hard to tell if its gonna be a regular migraine or a HM untill I start getting the left sided numbness and tingling. sometimes I get that just with my normal migraines anyway. I often will have a liquid feeling starting at my temple and move down the side of my face, then my face goes numb and droopy on the left side. From there my entire left side goes weak or paralized. I will get auras with both my normal migraines and my HM so I cant always use that as a guideline. I may start getting disoriented and "spacey" a bit before the HM.

Yes I do drive, And I am a stay at home mom with 4 boys. I homeschool 2 of them, (next year 3 of em) Obviously I dont live alone, I have my husband and kids who are a great help!

I go many places alone, but if I feel awful I usually wont. A medical ID bracelet is a great idea though. If there was an episode, then the medical responders know I have hemiplegic migraines, and what meds I am on. It gives the ER a way to treat me, rathere NOT to give me!

Emotionally, Just take one day at a time. I dont know how often your son has these. I may ahve regular migraines daily at times, but my HM episodes are only every couple of months. In the last 2 years they went from mayby one a year to much more frequent. It is still kinda new to me to deal with to this extent. (both HM and reg. migraines really stepped up) Dont give up hope, do try to get a proper diagnosis, and remember there are LOTS of meds to try to help get your sons migraines under control. Depakote is among about 8 different ones before we found one that helped a bit. Im still not fully under control. This end of this month my dr is trying Botox on me.

Also remember, This is only what I experience, and what I have done and tried. My diagnosis and what works for me may be different from your sons. Personally I would encourage you to get a 2nd opinion, especially if this migraine specialest isnt putting together a plan for preventative measures, and to get his migraines under control!

Another note, My 9 year old son also gets migraines. Even though he is very young, he is wanting to learn about them, and do what he can to help himself. He happens to be very MSG sensitive, and some foods containing MSG give him severe migraines. (example: Turkey will give him an almost instant migraine, though if I get an all natural turkey with no "natural flavorings" injected, he wont get a migraine) So I know its the "natural flavorings" injected that cause the migraine not the food itself. Both myself and my son try to eat MSG free. Even at 9 he is willing to give up a bunch of foods just to help himself. Which is hard, as he already has numerous OTHER food allergies!

I think Terry is right about your son, perhaps you need to scare some sense into him! He may already be scared however, and is just trying to "bury his head in the sand" hoping it will stop and go away. Different people react differently ya know? Sadly though, that tactic will NOT help him.

Anyway hope this helps!

Tawsha and TJ

Tawsha,
Thanks for your reply. Unfortunately Chris has had a lot more episodes than you have. He has had approx 38 -40 episodes since the 10th of January when this all started. Sometimes a migraine follows an episode, sometimes he has the migraine before the episode, sometimes he has a migraine without the episode, sometimes he has a episode with out a migraine. We keep a very detailed migraine diary; in fact the specialist was very impressed with it. However, we are unable to find a trigger; we can not find the common thread that connects. I feel very comfortable and confident with the migraine specialist that he is seeing and I believe that she has properly diagnosed him. I did as her if these were HM migraines and she said something like they used to try to separate and classify all the different migraines but the latest studies show that these separations and classifications may not be exact or something like that. I can't remember her exact words but she said that treatment is more important than labeling.
We are getting ready to leave for a week, Chris's marching band is going to Florida to march in the magic kingdom, and I hope and pray that he has an episode/migraine free week. I will check in again in a week.
Thanks again
Kathy

Kathy,

I will keep my fingers and toes crossed for Chris and hope his trip is migraine free! Enjoy yourselves, it sounds like a fun experience