I'm a 'child' : My migraine story
Hi everyone,
I just joined this site so my sincere apologies in advance if I say something I shouldn't or that's quite frankly, odd.
I'm an older teenager, haven't turned 18 as yet. I've suffered from chronic debilitating migraines since I was 12. For me, they are a disability. I was always an academic student. I have always loved studying and the studies loved me, apparently - as that reflected in my sterling grades for as long as I can remember. I've always been in the top 3% in my classes...and as I'm sure your imagination may take you, that all began to plumet following my diagnosis when I turned 13.
Suddenly, this bright spinning world from my young eyes came to a halt as I began to realize I couldn't do things like the other kids. I was too sick to go out on most weekends. I was too sick to do any of things I loved like Art or swimming. I was too sick to keep up with my friendships. It's like I was falling through a black hole and what made my entire life as a 13 year old girl built, collapsed onto myself.
Now, at 17 summers young, not much has changed if we simplify the devasting and soul destroying process of puberty and living with a chronic condition throughout these years. I'm retaking my GCSEs even because on the day of the exams, I had terribly severe pain and could barely look at the paper. Still, I did my best in all and got Ds, Cs, Bs and 3 A's. I'm hoping to do better this time round.
Yesterday, I had my first appointment with a particular and brilliant neurologist. He's marvelous, understands me and my illness completely and tries his best to reassure me I'm not alone as he sees children and young people everyday in similar situations as me. He also said I've began to suffer from 'cluster headaches' since last year as I explain what I've been tackling with. It's a rare rare occurrence, and such one that I should honestly count my blessings for, but I cannot cope dealing with cluster headaches in additon to migraines. I can kiss my A levels, my social life and all of my aspirations goodbye if they start to take hold of my life like these migraines.
But you see, the problem is I'm depressed. It feels like even if good things were to happen to me, which they do, I will always feel nothing due to how these migraines rip away the pleasure of it. For example, on the same day, within the same half an hour of being told I got into my #1 choice Sixth Form (which is extremely competitive and prestigious) I had invasive thoughts of wanting to fling myself in front of a train. It's just not working for me.
I don't know what I expect from this thread I've created. I know most of the answers that I'm searching for, remain unanswered and some of you have probably suffered more than me for a lot longer but I'm trying all that I can to get help and encouragement. I don't want to die but at this rate, honestly can't see myself making it to 21.
Thank you for listening to my story all this way if you have. It means a lot to me. You take care.
A desperate teen.
Hi Anastasia. Thank you so much for sharing your story. It sounds like you have had to be far braver than any young person should had ever had to be. Forgive me if some of these questions are ones you feel like you've answered a thousand times. I know sometimes I think if I have to go to one more neuro-opthamologist and be told "By golly, your eyeballs are just fine... I think there must be something wrong with your brain!" after they've tortured me with flashing lights and triggered a massive migraine, I will scream.
Does your doctor have you on a good preventative regimen? You said you're turning 18 soon, and that may open the door for all sorts of drugs you couldn't take when you were younger that might be much more effective for controlling your migraine and giving you more pain-free days. What sort of medication do you take when you have a migraine attack? How many are you having per week and how long do they last?
Has your doctor discussed things like diet with you? Many people with migraine are very susceptible to food triggers. There are comprehensive lists located all over the internet, but things like processed meat, cheese, (all dairy is a trigger for me), nuts, alcohol, chocolate, bananas, citrus fruits, vinegar, raspberries, tomatoes, onions, peas, avocados, mushrooms, yeast, soy, etc. There's more I'm sure I'm forgetting. A huge one is MSG, a food additive that goes by probably a hundred other names in food labeling. I'm so sensitive to food triggers that we eat all fresh food and cook from scratch to make sure we know exactly what is going in my body. But eliminating all foods that are a trigger can cause a huge reduction in headaches by eliminating that one trigger. For me, it took me down from red level pain ever day to yellow. Eliminating caffeine is also important. Pizza (which used to be a favorite food for me) is like THE WORST food a migraineur could ever eat. Every ingredient in it (yeast, tomatoes, onions, cheese, pepperoni, canadian bacon, olives, mushrooms) is a migraine trigger on its own. Add them together and you have a whopper of a headache. For pizza, we now bake me a homemade one at home with baking soda crust, alfredo sauce instead of cheese, green peppers, and ground beef. It's an adjustment. But I like having some pain free days.
I understand what you're saying when you say you have thoughts of flinging yourself in front of a train, but you don't want to die. I think what you really want is for someone to help you. Depression is very common and goes along with migraine. Who wouldn't get depressed when they deal with chronic pain and aren't getting help to find the answers they need to get better? Can you talk with your parents or doctor about these feelings? Some anti-depressents can actually help with the migraines, too. And some therapists are specially trained to help people dealing with chronic pain. But please, please, don't do something drastic. There are so many treatments out there, and so many drugs being discovered all the time. Have you heard about the new CGRP drugs? My neurologist thinks they'll be out in 6-9 months. Some of the people on this site who are even sicker than I am have been in the trials and say they really, really help. There is hope.
