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Cluster Headaches
#1

Cluster Headaches

I am posting this thread out of sheer desperation.

My little sister is the most important person to me in the world. She has been through several mental health issues and injuries through her life, and battles through each and every one of them like a champ. I won't get into the specific details of her life... I just want everyone here to know she is my favorite person I will ever meet. She radiates positivity, she shares so many similar interests as I do, and we have so many memories and inside jokes together... she just kicks ass to me.

About seven weeks ago, she started getting a headache every night at about 6:15 PM. Same time, every night. In the past, she has been somewhat of a prima-donna, so initially I thought it was some sort of performance. She would double over and hyperventilate, and slap her hands against her forehead. It would last for about ten minutes, and she would seemingly shake it off and return back to normal. No real traceable root event that caused the headaches.

But it continued. And they started getting longer and more aggressive. She would scream like a god damned banshee... She moved back into our parents place (she is 22 years old) because she finally went to the doctor. The doc immediately noticed the fact that the headaches come at the same time every day, and diagnosed her with CLUSTER HEADACHES.

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The term "headache" does not adequately convey the pain severity of the condition; the disease may be the most painful condition known to medical science.[10] The pain occurs only on one side of the head (unilateral), around the eye (orbital), particularly above the eye (supraorbital), in the temple (temporal), or in any combination. The pain of CH attack is remarkably greater than in other headache conditions, including severe migraine. The pain is typically described as burning, stabbing, boring or squeezing, and may be located near or behind the eye.[11] Those with cluster headaches may experience suicidal thoughts during an attack as a result of the pain.[12][13]

Edit- Below is a video of a cluster. This girl slaps her head to distract herself from the pain, which I try to prevent my Sis from doing. Odd how the Boyfriend hits her head, but I guess it works for her. Other than that, it is identical to what happens to my sister (WARNING- super awkward to watch, very sad)





She describes it as if a hot firepit poker is getting jabbed through her eye on the front, and another is jabbing through her temple to the side. I always sit with her through her headaches in order to give her her shot of medicine and her oxygen tank mask, which provides a bit of pain relief (but still no preventative medication as per our doctor). She gets pulses of pain every 30 seconds, and the headache episode lasts from 15 to 35 minutes. She initially had one per day, but now she is getting 6 per 24 hour period. It is springtime here in Western Canada, so the flowers are blossoming and allergies are at an all time high... hopefully it will end soon.

1/1000 people suffer cluster headaches. Here is an interesting fact from the Wiki page posted above:
Quote:Quote:

Robert Shapiro, a professor of neurology, says that while cluster headaches are about as common as multiple sclerosis with a similar disability level, as of 2013, the US National Institutes of Health had spent $1.872 billion on research into multiple sclerosis in one decade, but less than $2 million on CH research in 25 years.[59] Due to an occasional association with suicidal thoughts, cluster headaches have been colloquially named "suicide headaches."[12]

The reason me/my mom/my dad/my brother or my sister in law sit with her through every one is because a quarter of sufferers will attempt suicide due to the pain during an episode. When I finished school a month ago I returned home to visit, and had no idea what a cluster consisted of. I left the room for a few seconds and in that time she had already stabbed her wrists with scissors to distract herself from the head pains. Now I bear hug her and give her a wash cloth to bite into while she has episodes. My sister already has said she will not have kids because apparently 1/15 children of sufferers will inherit the gift of clusters.

I hope they are not 'chronic,' in which they will haunt her every day. Most people go through seasonal episodes and enter periods of remission. I haven't slept more than three hours in two weeks because I generally pass out at the foot of her bed after she gets middle-of-the-night episodes. I am an absolute zombie at work and so is the rest of my family, who has all moved in to my parents house to see this shit through.

Anyways, sorry for droning on here about the cluster headache issue. If anyone here has any advice or experience, I would love to hear it... As I said before, we are all desperate. Thanks so much for reading this, guys.
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