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 Brandy on July 14, 2013 at 6:11am
Madaline,
Try not to let the hair loss bring you down. I know easier said the done. But that is great that you have been able to excel in school. Don't let this disease bring you down. There are several options out there to cover up the hair loss if you choose to. I was working on my Masters Degree and working full time when I was diagnosed with Alopecia and I didn't think I could but I got through it and I know you will too!
Comment by Rici* on July 14, 2013 at 4:55am

Dear Madeline,
first: I want to give you a big hug.

Seems like it's all getting too much for you at the moment. I guess your migraine and the stress and worries your hair loss cause are even reinforcing each other now and I guess it's hard to manage to not let them take over your every day life. I also experienced my hair loss as sth that made me afraid of not having any control over my body. I lost my hair during my bachelors studies. One of my first and best decisions was that I would just study slower, take more time so I can handle and take care of myself and still pay enough attention on my courses. Could that maybe be an option for you, too?

I do not know what to say, I wish I had: "the magic solution" ;), But there is no use in driving yourself into a burnout. you would get even more problems. That you actually noticed and ask for help here already is a huge and good step!!!! So now the question is how to stop this downwards spiral? What are the things that make you feel good? Do you have time for these things? How could you get more time? Who could help you, be at you side?

Another thing I learned during the last years is that it is OK to be selfish and to say no. I do what I know is good for me, and sometimes people that don't know me well might think that I am boring, ignorant or selfish or whatsoever... but I know that I just listen to myself and don't force me through things that wouldn't do me good. But I also understood that self care alone is not worth anything. you need other people to take care for you and other people need you to take care of them. In you home you now need a lot of understanding and support from the adults living there, but they also need your support. Unfortunately I have no idea on how to get an atmosphere in which both sides feel good, exept: communication. My parents often have NO clue of what I think. At the same time I have no Idea of what they think (and if i think i know i might be wrong). So we had to learn to communicate better. And we did. It took a lot of time and energy. Talking about things again and again, really expressing what my problem is and how they can help me, so they can understand it... isn't always easy.

Madeline, I wish you strength, courage, optimism, and the support you need.
big big hug

Comment by Chris on July 14, 2013 at 1:04am

Madeline,

I too have suffered with the same symptoms that you have described, although my alopecia did not set in until much later in life. Through journaling I was able to identify the cause of my headaches - lack of sleep. When I go a week or more with an average of 5 hours of sleep per day I am guaranteed to get a cluster headache within 1 month. I was really astonished at how clock work like the headaches came on. I suggest starting a journal and record everything, what you eat, how much you exercised and of course when you start/end your headache. Over time you hopefully find a pattern and be able to change your habits to avoid the headaches. Also pay attention to little clues that a headache is about to set in - for me my vision in my left eye starts to diminish. As soon as this happens I take 3 advil and go to sleep. When I awake I have managed to sleep it off and may have just a mild headache.

As rfharp indicated take care of yourself first - establish patterns and use your bed for sleeping only, no homework, tv, phone in the bed. This will signal your body/mind that it’s time for bed.

As far as the alopecia goes - it takes time to get used to your new look and I have to admit that I am still not fully comfortable with it after 8 years. What has gotten me through is having a strong support group (My wife and kids) and knowing that my outward appearance does not control who I am.

Wish you all the best and continue to reach out for support!

Comment by rfharp on July 13, 2013 at 10:05pm

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.

Comment by Valeri Caputo on July 13, 2013 at 9:11pm
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 : )
Comment by Captain Jack on July 13, 2013 at 8:23pm

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

Comment by Jean on July 13, 2013 at 7:04pm

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!

Comment by Nathan Paul Prince on July 13, 2013 at 5:56pm

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!

Comment by Cinder B. Rand on July 13, 2013 at 5:42pm

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!!!!

Comment by willow on July 13, 2013 at 5:24pm

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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