Migraines Are Ruining Our Lives

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Migraines Are Ruining Our Lives

Post  warriorqueen on Mon Dec 08, 2014 7:07 pm

Hi everyone,

I stumbled across this forum after looking for some sort of support group. My son is 13 and has been suffering from severe migraines for the past three years now. We've tried everything that insurance would allow, and that I could think of. He has had MRI's CAT scans, child neurologist, nutritionist, reiki, taekwondo, tons of meds, and a therapy to no avail. I've missed work, and went through my meager savings in trying to care for him. He is not considered disabled so there is no help for him from the school.

We are at the point now where he is a teenager and I feel that he should want to get better. He refuses to do the things that help, i.e. meditate, exercise, stay away from certain trigger foods, keep a journal. Today he is suffering because on Saturday he snuck and ate heaven-only-knows how many brownies in addition to some pork. Chocolate and pork nitrates are triggers for him.

I'm at the point now where I am unsympathetic. And I think it is beginning to show. I also suffer from migraines although not to his extent. However, I do what I need to do to keep it moving. He seems to have no tolerance for pain and I need to know how to deal with him. His room is a mess, his grades are horrible and I can't punish him because everytime we start to have a discussion, he starts twitching and then he has a headache. I feel like I'm being manipulated. I know the pain is real but I am flat out of caring especially since on the days when he feels well, he does NOTHING to prepare himself for the bad days.

I've given up. I don't know what to do. I need someone to support ME. And tell me how to end this nightmare. He's starting to notice that I am a little cold and I don't want him to think that I don't love him because I do. I'm just tired of this chronic illness. And I'm especially tired of his loser attitude. I've had enough of his pity party. He starts highschool next year. This has got to stop!

warriorqueen

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Re: Migraines Are Ruining Our Lives

Post  tortoisegirl on Mon Dec 08, 2014 8:23 pm

Welcome! I'm sorry you're having to deal with this; it sounds like quite a tough situation. What about a family therapist, maybe someone with some experience working with teens with a chronic pain condition? They could hopefully advise you on how to help him. Also, to get down to the root of the problem of why he doesn't want to put a little work into something that could have a big reward...are those lifestyle changes things you both know significantly helps him, or just general things that are known to help some folks with migraines?

With a doctor's note, chronic migraines should definitely be considered a disability to the point of getting him some accommodations (504 plan I think they call it). There are also some programs for kids/teens with chronic headache conditions, often inpatient, which focus on coping skills. At least a few of the major hospitals & headache clinics offer them. Although it may be tough love to the extreme, many programs emphasize pretty much forcing the kid to go to school each day. If he knew that with a migraine he couldn't stay home, putting some effort into it could help.

Having been a teen myself not too long ago, I could see if it also came down to him wanting to feel normal...not having to go to doctors appointments, try meds, restrict his diet, avoid things his friends may be eating, etc. It does sound like there is a behavioral issue aspect however. There is a difference between punishment and this is what is required when you live in our house however, especially if he does have some pain-free days.

How often are the migraines occurring, such as how many days a month? That could help sway our answers. Does he at least have a good treatment plan for acute attacks? Although preventing them can be tough, there are a good number of abortive options now, although I imagine at 13 there are less (depending on how aggressive the doctor is). Are you currently working with a doctor or are things at a standstill?

Note there is a big difference between a true headache specialist (only sees headache patients) and neurologist (treats many different conditions) when it comes to experience level. Many of us tougher cases have gone through a long list of doctors to find one who was truly helpful. Another route may be a pediatric pain specialist, if such a thing exists in your area and they take non-terminal cases. They could have some resources for the behavioral aspect. Hang in there! Best wishes.

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Re: Migraines Are Ruining Our Lives

Post  Seaine on Tue Dec 09, 2014 11:21 am

I wonder if he may possible have depression, which could affect his behavior and ability to deal with the migraines? My younger sister has a chronic pain disorder and my mother is frustrated with her because she seems to have great difficulty making the changes that could help her. I recently told my mom to focus on one thing at a time with her, starting with her likely depression. After all, if someone is depressed how can they even begin to fix other things in their lives, especially something as difficult and overwhelming as chronic migraines? You are probably aware that depression often occurs with chronic pain conditons such as migraines. Who knows if the pain causes the depression, or if there the health issue itself also causes the depression in addition to the migraines.

I know you have tried many things but I will tell you one more thing which you may not have tried yet... artificial food coloring. I've suffered from chronic daily migraines for 15 years, and only two years ago I discovered that artificial food coloring was contributing to about 90% of the pain and symptoms. Don't get me wrong, I still have my migraines but now they are manageable. Not only was my pain reduced by 90%, but my nausea was almost completely eliminated along with the IBS I used to have AND, most importantly, my emotional issues. It may sound crazy but once I stopped eating food dyes, my depression and irritability almost completely disappeared. I used to have difficulties handling social situations, getting easily upset and depressed all the time. Food coloring has been linked to behavioral problems in children - there have been no studies examining their effect on migraines but let me tell you I don't need a study because I already know! Just a recommendation for something that has helped me immensely. When I say food dyes I mean anything with a number; red #40 yellow #5 etc. They are required by US law to be declared on food labels.
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Re: Migraines Are Ruining Our Lives

Post  Mini on Tue Dec 09, 2014 3:45 pm

It is easy to understand that you feel extremely frustrated and helpless at not getting anywhere with helping  your son to deal with migraine better. But I can assure you that no matter how hard you think it is for you it is much, much worse for him.

Not only he has to deal with en excruciation pain, which he does not understand he is also still a child. He is also a teenager watching his friends having fun, and enjoying life whilst he is excluded from all things he should enjoy at his age. He is in a bad, bad place.

There are many reasons why he finds it difficult to help himself (BTW things like meditation and some other remedies you suggested, are useless in treating M.

I agree with what other said, mainly that he needs a proper doctor who understands migraine, and who can built relationship of trust so you can begin to try various combination of treatments that might work for him. There are several things to try. Something might work for him.

Hopefully, as he grows up his M might disappear, as is the case with many boy sufferers (not so with girls).
Don't be surprised that he is rebelling against your suggestions, he might be resentful because he needs more love and understanding. I am sure you love your son, but does he know that? Maybe you will get better results with him, if you control your frustration better, and show him how much you love him. Talk and vent your frustrations by talking to friends, or here. Take up meditation, or some other pastime to calm yourself.

But do your best not to get angry with him. Be angry with the condition, not with him. He shows his frustration by being rebellious, this is what teenagers do. You accuse him of pity party, perhaps he feels sorry for himself, or perhaps he feels that you don't care.

As mothers, our job is to carry on, regardless, even when we are furious and angry.
I am sure you care for him deeply, and that he loves and appreciates you too, even if he does not show it.

Teenagers are always difficult, even when they do not suffer from migraine.
The pain of migraine is horrendous, it is depressing and scary, you have no energy to do anything, many of us struggle with housework, many of us never see our friends, many of us become depressed. But we are grown ups, he is not, he does not know how to deal with his anger appropriately. It sound to me like he is feeling very down.
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Re: Migraines Are Ruining Our Lives

Post  Migrainegirl on Tue Dec 09, 2014 4:15 pm

There are a lot of good suggestions here. It sounds to me like he is doing the typical teenage rebellion thing. Pretty normal for this age. Unfortunately he is rebelling against the rules he sees you as having set, and therefore eats and does things he shouldn't.

The good news is this is self defeating. He's the one who suffers the pain of the migraine. The best thing is to let this be his problem. He has to take ownership of wanting to feel better and do the things he likes doing. If he sees it as a power struggle with you, it could go on a long time.

Just tell him, his migraines are up to him. You will be there to support him, but he has responsibility for his own actions. And dont get upset when he blows it, because he will. He's a teenager.
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Re: Migraines Are Ruining Our Lives

Post  MarkoMak on Mon Mar 09, 2015 1:58 am

i can't say for sure if LEDs are any better than fluorescents but I imagine they will be! If it were me, I'd go for it. LEDs can be adjusted to any color in the spectrum and with a little research you may find the right type of LED (a bulb that switches colors/has many adjustments), and the right color pattern for less eye strain.

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Re: Migraines Are Ruining Our Lives

Post  sailingmuffin on Tue Mar 10, 2015 7:07 pm

Hi,

I'm so sorry to hear your son is having such a rough time. I got my first migraine at age 12, but they only became chronic at 17- now in early thirties. I was a junior in high school when mine became chronic- I was eventually diagnosed with Chronic Intractable Migraine/New Daily persistent headache.

Does your son go to public or private school? If he goes to public school, then getting a disability qualification and starting an IEP/504 plan shouldn't be a problem. You just need a letter from his doctor stating this and what accomodations he might need- leniency in attendance, ability to make up work or tests missed due to migraine. If he is private school, see if the school will work with him so that he is able to do his work. I was at boarding school when mine became chronic. I was allowed to turn in work late,but I knew that the work still had to be done. I'd go ahead and get the ball rolling on this part.

It sounds like both of you are a little "burned out." Would it be possible for both of you to talk to a therapist or even his doctor and just put everything on the table? This way, it would be harder to escape the discussion and someone else would be there to help. This is just a thought. I know it must be hard for both of you.

I'm quite sure your son wants to get better. However, he probably wants to feel normal as well. It sounds like he is probably just as frustrated, confused, and tired of dealing with the migraine monster that he doesn't know what to do anymore. Yes, he needs to take responsibility for his actions.

It definitely sounds like you both need some help. Is there a headache specialist in your area. The other thing is that some of the preventative medications can make you feel depressed and it is possible that this and pain are just making the situation worse. Have you considered a headache clinic. I'm pretty sure that some will take children.

I wish I could make this go away, but I can't.

Feel free to vent anytime. Please keep us posted.

Pain free days,
sailingm
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