Alopecia World
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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 Shari on July 13, 2013 at 5:04pm
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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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Comment by Tim Irvine on July 13, 2013 at 5:20pm
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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
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Comment by Jo-Anne on July 13, 2013 at 5:20pm
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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
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Comment by willow on July 13, 2013 at 5:24pm
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I suffer from chronic headaches. There are a few things you can try. I take a migraine medicine called Relpax. There are a few variations of them. You take them as soon as you get the aura, sensation of the migraine, including clusters. Even though clusters are said not to be a migraine, I would beg to differ. My husband and I both get clusters, and we have a little nickname for them, which I don't think I can say on this forum. Usually we find environmental sinus issues can be dealt with sinus med's. If you can figure out what your triggers are, you may be able to avoid some things. Often it is allergy/diet/stress. Which on the latter, being in school, with all the stresses, compounded by the stresses at home, compounded by the recent alopecia problems, is a hell of a load to be carrying. Some relief could be had via a form of meditation, just to quiet your mind, and soul. I often find doing so in the tub, with a facecloth of hotwater on my face a great way to relax, along with helping my sinuses, and or headpain. Another thing you could try is eating as much cayenne pepper as you possibly could. Either dipping into the powder with a peice of cheese, or adding it to whatever your eating. It helps by opening the blood vessels, and increasing your blood pressure. It is a natural simple trick I have used throughout my life. I believe part of the headaches are alopecia directed. That is my opinion as I started having the headaches/migraines when my hair fell out. Things will get better, easier. Your at a hard time in your life, and when the stress decreases, your hair may just grow back in, and the headaches can stop. Believe it, get some good rest, and try to give yourself some compassion, you'll get through it. I send blessings that your parents lay off for a while, so you can breath a little easier. Hopefully the summer's rest, will help you get a bit of R n R.
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Comment by Cinder B. Rand on July 13, 2013 at 5:42pm
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Hello Madeline, wow May is certainly very recent for you. I know it is very hard in the beginning but...I think you will be surprised as time goes on how it affects you but not in a negative way. I lost all of my hair 6 years ago in May and I lost it all in a matter of weeks and then it just continued all over and has never even made an appearance since it left. Of course all of the devastation I felt and I cried and we all know the feelings over it, if, we have been through it. Then I don’t know I just started embracing the whole thing. I have met so many fabulous beautiful people. For me, it has been a journey that I now know will be one for the rest of my life. Yes, people around do not know what to say. They are at a loss. I have one aunt that every time I see her or talk to her she starts crying. It’s funny I always have to comfort her about it. This year I have decided to go out once in a while without a piece on. But, with that said I have many pieces and I never have a bad hair day, a bad eyelash day and so on. Your friends will hopefully become more sensitive about what you are going through and if not, you’ll make new friends. Plus you have all of us and in my opinion we are one of the best support groups ever!!!! We share, we love and we have tons of compassion (as you have seen). You’ll be great, you’ll see. Peace!!!!
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Comment by Nathan Paul Prince on July 13, 2013 at 5:56pm
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wish I could say more, but I can wish you a groovy day, and losing your hair is just one facet you cansee in the mirror - it does not negate the other groovy experiences you will enjoy in life! Big hugs from Calgary, Alberta!
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Comment by Jean on July 13, 2013 at 7:04pm
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Madeline,
I have 2 teenage kids and I know I yell too much. They tell me I do all the time! I didn't see if you mentioned anything about counseling. If you are not getting counseling, I suggest that you do so. Your parents have no way of knowing what is going on inside your head. A counselor will help with that. Please know that you have the entire AW community behind you! Let us know how things go for you!
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Madeline....
This is the first time I can remember commenting on the blog. And frankly I can count on two hands the number of times I have written on any blog. But your story struck a nerve and I felt like I needed to join everyone else. I agree with all the comments shared. I watched my Dad suffer with the cluster headaches for most of his life. I pray that they will subside and ultimately be in your past. As far as alopecia, I started with Areata when I was in the 5th grade. A dermatologist treated me with intense ultraviolet treatments and you know the spots filled back in. Than after serving my country in the Navy for 24 years, a month or less after my retirement I lost all my hair. Totalis to Universalis. I have a few white hairs trying to come in but nothing significant. All I can say is stay positive. And believe me when I say this Tim is spot on when he speaks of the weeding out of those along the way. Stay strong and focused on your goals and you will succeed. And as my father always told my brothers and myself "if this is the worst thing that happens to you you will be lucky" Don't let anyone or anything "steal your dreams". Our thoughts an prayers are with you.
Captain Jack
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Madeline,
I feel for you. I too suffer alopecia and cluster headaches. My headaches I have suffered as long as can rememberand my alopecia just diagnosed in Jan of this year (with 70% loss so far). I am 37 years old and although I am the parent I absolutely feel the same....but for me it is screaming toddlers and a household that never stops. I understand your sruggle with the stress and the pain and I feel terrible for u. The one thing that I have found gives me some peace in all the crazy is yoga when i can spare 20 min at night.....it gives me some quiet time for me. It helps clear my head which I find to relieve a little stress and slow my headaches a little cause it gets the blood moving better. If for nothing else please know that someone else out there does understand you. I really hope things get better for you : )
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Madeline,
I am not a Mom but do have a niece. I will give you the same advice I gave her. You have to live for yourself. You have to find a way that being different is OK. Be proud of it, make it a banner you wear for the whole world to see.
As for your headache. You need to take care of yourself, get rest and stress less. I know that it probably what lots of people tell you. But as a type A, perfectionist I know that in order to keep going and doing your best pick your battles and let everything else go. Find something that relaxes you. I have a ritual of nightly take long hot showers and in the morning when I get up for 5 minutes I do deep breathing meditation. I then plan my day of what I know I can do and leave the rest to get done another day. Lots of water and healthy foods help my stress levels and keeps headaches away.
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