Hello and Good day fellow Cluster Heads, friends and families.
I wanted to post some videos on Cluster Headaches for reference for fellow survivors and people wanting to gain some information on the disease and also what us survivors endure daily if your chronic like me or episodic.
Here is is my YouTube channel "ClusterHeadSurvivor"-Please follow my channel. Add me as a friend and or message me
Now here is a collection of videos from YouTube.
Some of these people I have emailed in the past and spoken to. Some not. If I am posting your video and you want it removed, just message me and I will remove it as soon as I can. I am only posting for educational purposes to help others.
This video is Dr.Peter Goadsby. A Neurologist who coined the term "Most painful disease known to medical science." I have great respect for him dedicating his life to helping others. Listen to his comments "Childbirth is a doddle compared to Cluster Headaches"-imagine giving birth without pain meds several times a day for rest of your life....At the very end he discusses the very last chance for CH Chronic survivors like me.DBS. Which I have had.
This video is a discussion and explanation of Cluster Headaches. Headache specialists
This video is a documentary of Cluster headache survivors. It is hard to watch, even myself as I know what he and others go through
A fellow survivor,having an attack.
One of my favourite videos. Well done, explained. and I am in this video
Excellent perspective for episodic survivors. For me, its hours in between
There are many many more excellent videos out there. I hope this sheds some light on what Cluster Headache Survivors endure, or know if you are one that your not alone, support is here.
If you are recently diagnosed by a neurologist. Best advice I can give...is research research research. I spent 3 years educating myself and the remaining 4+ now ongoing education with this disease and it has no brought me forth to where I am today.
If you have a family member diagnosed, a friend or co worker etc. Please educate your self.
There is no magic pill we can take, no potion. They are real. No one is faking any of this and as a survivor I can speak based on the cluster head survivors out there that yes they are that bad and debilitating. We may not want the world to see. Each person having an attack will experience different feelings and emotions. Some don't want anyone there, some only family. It depends on the person. Offer kindness, sincerity, be supportive. Running away, is disheartening and very hurt full. If a survivor during an attack asks you to stay or leave, respect their wishes. I know during attacks my wife or so comforts me by a simple hand on the shoulder. It shows how much they care and love me. Its not fake and its very sincere. They are just letting me know they are here,supportive and loving.
And during a bad attack it for me is comforting.
I myself if in public like to hide. I am large guy and can scream loud. Its embarrassing and humiliating. I remember being at a car show,unable to leave where I was parked and had 500 people stare at me. It was almost as bad as the attack. Now after 7+ years of being chronic. Vanity went out the window a long time ago. Since I am chronic,disabled. I hardly go out much in public and if I do, its short. Most of my attacks are at home luckily. My son ended up living with the attacks. My beautiful wife married into them. It takes a strong woman to marry a sick man. I am beyond grateful. I thank God everyday for my wife and son.
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