My Experience with Cluster Headaches

By Winslow

I live with cluster headaches, also referred to as trigeminal autonomic cephalalgia (TAC).

According to the American Migraine Foundation, cluster headaches are said to be, “the most painful of all headaches. They have been described as “suicide headaches.”

What sets these “headaches” apart from a typical migraine is the specific attack on the trigeminal nerve (which is cranial nerve five). This nerve controls sensations of the face. Due to this, the pain associated with cluster headache often localizes to the face particularly around and behind the eye. The inflammation or irritation of this nerve also causes an autonomic response in the form of symptoms like red, swollen and/or teary eyes, runny or stuffy nose, sweating or flushing of the face, drooping of the eyelid, or a sense of fullness in the ear.

I have had migraines all my life, but I didn’t start getting cluster headaches until my mid-twenties. I was amazed when I read that they were called, “Suicide Headaches.” This is a completely accurate description. I am not generally a depressed person. I do not suffer from any mental illness or anxiety but when I get cluster headaches; that is the only time I am ever suicidal.

The pain and other symptoms are so intense, my brain’s only thought is ending the agony. I have a theory that cranial nerve five is somehow associated with mood stabilizing cognitive function and therefore when is irritated, throws off emotional homeostasis. I am not a neurologist so that is just my theory. But, what I can tell you for certain is that cluster headaches are one of the worst experiences that a person can face. With my kidney disease (medullary sponge kidney) I have constant kidney stones. These stones are unbearably painful at times, but I’d still rather have a kidney stone than a cluster headache.

My cluster headaches require a completely different strategy to battle than my normal migraines. Below is a list of things I have found to help me endure the agony until the cluster headache passes.

– Utilizing both hot and cold temperatures. I know I look insane when I am treating my cluster headaches. I typically have something cool over my eyes and I lay the back of my head on a heating pad. I alternate this to try to calm the irritated cranial nerve and soothe the swelling accompanied with clusters. (Note: DO NOT fall asleep on a heating pad. When using it on your head, keep it on the lowest heat setting and alert someone that you are lying down on a heating pad in case you fall asleep).

– My local dollar store sells small, portable ice packs. I have an entire shelf in my freezer dedicated to these little life-savers. If you battle cluster headaches, I highly recommend getting a good heating pad and some ice packs.

– I have found that taking allergy medicine helps. If I take it in addition to my prescribed medication, it can alleviate the other symptoms associated with an irritated cranial nerve (Note: Do not start or stop any medication without first contacting your healthcare provider).

– Using a nasal rinse such as saline spray helps, too. It aids with the pressure and stuffiness and using peroxide in the affected ear helps relieve some of the pressure. (I pour a small amount in my ear and let it soak for a minute and then wipe it out with a tissue)

– Taking a hot bath while putting ice packs on my neck and a cool clothe over my eyes helps dissipate the intense throbbing. My trick is I pour some water over a washcloth and put it in the freezer for five minutes (long enough to get it cool, but not to freeze it) then I get into the hot bath and turn the overhead lights off and use a tiny nightlight instead.

– A healing resting area is an essential to battling cluster headaches. Using something such as a box fan to create white noise and covering your windows with a black out curtains (or you could even use an extra blanket) and having a cool temperature will help you be able to rest and get rid of the cluster headache.

– When I get cluster headaches, it is typically because my metabolic state is off in some way. Drinks like pedialyte or electrolyte stabilizers such as sodium chloride tablets can help your body fight the cluster headache. (Do not start or stop any treatment without first contacting your healthcare provider)

– Maintaining a regular schedule. Lack of ANYTHING triggers these horrible headaches. If I don’t get enough sleep or hydration, if I get too hungry- BAM there’s a cluster headache. Be sure you are practicing adequate self-care.

– If you do ever get suicidal with your cluster headaches, please reach out to someone. Also, it helps me to leave little notes for myself when I get these. These notes remind me of little good things I want experience again. They remind me that cluster headaches are temporary and I have to fight for my better days. I recommend everyone have a few post it notes displayed around your home written with things that will help you battle the hard moments.

– Don’t be afraid to say NO. If you have a cluster headache, DO NOT force yourself to push through something you don’t want to. You are allowed to say NO. Cluster headaches are one of the most painful things a human can face, and if someone else can’t understand that then why are you pushing yourself to please them anyhow?

If you battle cluster headaches, let me just say that I am so sorry. Know that your pain is validated and understood. Remember to fight through the bad days because the good ones are more than worth it!

Wishing you hope, healing & happiness.

– Winslow E. Dixon

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