In need of support

It's days like these when I really need support. I don't really know what to do with myself. My family needs me, and they are constantly upset by my lack of contributions to the household. As a teenager, I'm sort of at the whim of the adults in my household, and they don't always understand what's going on. I have cried countless times today, and probably will again.

I was diagnosed with alopecia in May, and it has progressed to about 60% loss. I also have diffuse hairloss, and my ponytail is about half the size it was before. While some regrowth has occurred, the spontaneity and unpredictable nature of the disease frightens me. I just don't know how to handle this one addition to my other health concerns.

I suffer from chronic cluster headaches, which began last autumn. I thought that they were migraines, as did the headache specialist. I was getting a migraine every couple of days for months (it took 4 to get in to see him), sometimes lasting for a week or longer. They would fade in and out all day, to the point that I wanted to leave school and never see the light of day again. Despite the headaches, I attended school and took the highest level classes despite the pain. I was loaded up on all the high-tech drugs for them, and I ended up sleeping about 3 hours per night due to staying up late on homework (migraines inhibited my ability to concentrate on just about anything). Well, they never went away, and then the alopecia showed up. I also suffer from anxiety, which obviously didn't help the alopecia one bit.

So, recently I found out that my migraines are actually cluster headaches. They are headaches which last from 20 minutes to 2 hours, and they always affect one side. A person can have 1-8 cluster headaches per day (I average about 6). The headaches tend to occur several to many times a day for a period of days to weeks, and then disappear for a variable amount of time, usually weeks to months. They are nicknamed "suicide headaches" or "birthing headaches" because people killed themselves due to the pain and they are comparable to the pain of childbirth.

So basically, I just don't know what to do. I'm a perfectionist, and a student trying to get into highly competitive colleges. But at this rate, I feel like I'm going to burn out. I can't sustain this pain, especially not with the burden of parents (who seem to lecture and raise their voices about everything imaginable on a near hourly basis), homework, and other everyday events.

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Comment by Jo-Anne on July 13, 2013 at 5:20pm

Oh hunni I just want to give you the biggest hug ever. Sound like a lot of this is due to stress. Have you tried relaxation techniques ? I was 15 when I had my biggest hair loss about 75 per cent. I wish I could give you what I now see, this is the only life we get so make the most of it. That means enjoying it, concentrate on the things that make you happy and try to block out the negatives. Having goals is a good thing and we should always have them but not to the expense of your health. I know it can feel like no one else understands the pressure you are under but a lot of people do. It's how you handle it that makes the difference. Have confidence in yourself xx

Comment by Tim Irvine on July 13, 2013 at 5:20pm

Madeline,

Alopecia, for all it's mysteries, has never felt like a disease to me, only a condition I couldn't control. I have had it since age 5 when it started as Areata, and progressed to full on by age 14. The earlier years were the hardest. But today I can't imagine life with hair any more. To me, this is my normal. While you have many more challenges than most should have to endure with your headaches; you seem to find a way embrace the challenge and defeat it.
As a newbie to Alopecia, my best advice would be to not let it rule you. Don't let it keep you from living life.

As a child I hid myself away from many public activities to avoid explaining it to people, therefore missing out on many things. There came a point were I made a pact with myself that I would not let Alopecia ruin my life anymore and I would be the best "me" God intended me to be.

Alopecia gives us a gift of seeing people. Truly seeing people. When you are the bald headed kid/teen/girl, you know who your friends are. They are the ones going out of their way to be around you. They are the ones who stand by you.

I often think of the people Alopecia had weeded out of my life for me. And that's a pretty good thing.

From your post I tell you are determined, smart, and not afraid of a challenge. Those are qualities that will serve you well with Alopecia. I believe what you will deal with from Alopecia pales in comparison to the pain you are suffering from with your headaches. But I also believe you will handle it better than many of us have.

Best of luck on your journey! Tim

Comment by Shari on July 13, 2013 at 5:04pm
As a mom of a teenager I can tell you we yell a lot and expect a lot without giving enough thought to what your going through. Sometimes we forget how stressful being a teen can be. It's probably because the stress of being parents can overwhelm us at times.

I know your parents love you unconditionally and I pray you will feel better soon. These did imitating headaches plus the AA and stresses of school and not sleeping must be paralyzingly for you at times. Take care of yourself, get rest and try not to let stress take over. Without health you won't be able to accomplish your goals...keep your goals in sight but stop to take care of yourself so that you can continue to move forward with your dreams. You will get there...keep the faith and have hope.

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