Cluster Headaches - 'Living with the Beast'

[ClusterHeads]

Started for me at age 22, im 27 now, oxygen is my best fren these days, The world needs to know more about clusters,if anyone is having a hard time,i'm here to chat.

[GoTubeYourMom]

This has such a horror movie feel to it, especially with the music and the ending... and I realize that that's exactly what this is... people out there are living with this nightmarish disease, and it's truly horrifying...

Much worse than any horror movie I've ever seen... I can't even put into words how terrifying this is...

I am so sorry to all the sufferers; I wish there was something I could do...

[drjeffolsen]

I am an episodic cluster sufferer, one of the "lucky" ones ;) I think your videos are really neat and your visuals were great at portraying the pain....if that's even possible. Thank you for your interest in our condition my friend

[chill14later]

Once it is with you it never goes away. Once the cycle of the headaches starts it could be days, Weeks, Months before it stops, But only to start up again, Like a seasonal torture, Except the beast decides the season. It may be months between headaches, But rest assured once it starts the cycle is daily, Until it just stops. I always live in fear of the return of the agony. Even though I lived through it, I am at mercy. It does what it does & I cannot stop it.

[hashplant100]

im sittin here having a fucking headache and u want to put that stupid fucking music to ur video and talk pointlessly about where u work with ur fucking annoying acceint shut the fuck up and get to the point u butter tooth britt

[bayls0303]

@hashplant100 who the bloody hell do u think u r? no doubt a brainless American. This is cluster headache not just a normal headache, i would 100 of ur whimpy headaches each day than have 1 more cluster attack IDIOT

[GoTubeYourMom]

@bayls0303 I wish idiots like you would be aware of your own stupidity... brainless American? Stop being so bloody self-absorbed and instead of being a prejudice prick, why don't you try to educate others, instead of being insulting?

But I will agree that hashplant100 is a total douche... but he's probably 12 and lacks muscles to make anything of himself, so just let him be...

[bayls0303]

@GoTubeYourMom well for 1 i am not a prick, 2 i suffer from these quite badly and one of the few woman to get this. And i am no where near self-absorbed. And you say not to insult ppl isnt that what you just done to me? nothing like the pot calling the kettle black

[Cschive]

Jesus, I'm glad I don't have that and I'm sure in hope for a cure, although I've been having a mild constant headache for over a month and a half now, surly if you can deal with this, I can deal with my puny problem. Going to see an eye doctor tomorrow though for an eye exam, make sure that isn't the problem, had a CT scan everything there checks out, (shrugs)

[ThatMattOne]

I've just recovered from my longest ever CH cycle. Up until now I've been luckier than most, only a week at a time once every year or 18 months. This time it lasted for nearly 30 days with a few attacks a day. Anyone who suffers CHs has my utmost sympathy and so does anyone who suffers with them, family and friends. God bless us all and I pray a cure is found soon. x

[Redsir]

What is the medication that you are injecting?

[T0mm4s70ck4]

I haven't seen a post about this so I figured I'd say something. I know this sounds ridiculous, but google lsd cure cluster headaches. The LSD they give you is non-hallucinogenic, and in trials it has shown to help patients. Please don't disregard this as false, google it. Just wanted to share this promising research for this terrible condition.

[marinaja5]

Thank u for this video! I'm a chronic clusterhead for 8 years now. Still no cure, still fighting the beast, less than a few years ago, so i'm glad. Glad it isn't so bad as it was. Keep fighting the beast, don't let it beat you!

[777tbird]

Nice job. I had them off and on for 25 years and been in remission now for 4 years. The pain, there are no words that can do it justice. It scares me even to think about it now. Thanks for spreading the word. Strive on brother. Sumatriptan injection saved my life. It’s too bad that it is so hard to get especially at peak cycle, pharmacy, insurance treat you as drug addict –it’s sad. Have some stored,4 years in fridge. Anyone know how long they can keep? In US is expensive.

[UltimateBroadcaster]

ive been living with the beast since i had a really bad head injury in a few years bak. it usually starts when im in the car. it feels like someone is at the bak of my eye, pulling it into the socket. worst pain ive ever been in

[smileychickify]

Thank you for this video. I am living with the beast as well for about 7 years and I am only 28. The pain is so bad and I have 4 young kids and its so hard to be a playful mom knowing that at any moment the beast might show up. I was surprised to see that there are so many people living with this. The only thing that helps me is prednisone but my doctor wont keep me on it for more than one month and I suffer for 6 months out of the year everyday with a 2 month break. I wish us all strength.

[smileychickify]

Thank you for this video. I am living with the beast as well for about 7 years and I am only 28. The pain is so bad and I have 4 young kids and its so hard to be a playful mom knowing that at any moment the beast might show up. I was surprised to see that there are so many people living with this. The only thing that helps me is prednisone but my doctor wont keep me on it for more than one month and I suffer for 6 months out of the year everyday. I wish us all strength, Thank you

[perediablo1]

Well done mate! I am a clusterhead as well, so this really hits close to home. The way he is living his life as close to normal as possible is so motivating. The restarting of the car after his attack is so symbolic and so well placed. Congratulations on a very well made video. Keep them coming. If you ever wish to do an American version, I would be more than happy to help any way I can. Thanks for all you've done!

[MissAngable]

I suffer from cluster headaches and have since about age 21. I am now 33 yr old female. I am eposodic and now coming out of a cycle (i am hoping). I am PF for about 31 hours. I was very close to just ending it all but then feel so guilty leaving my kids. It is a very hard illness to deal with and would wish it on noone! I am crying just thinking about getting another bcs I am not dealing well. Hope they do find a cure! :''(

[BlueStrikeP]

I'm 21, and the headaches started at the end of last year. mine last from 1 to 3 hours, 2 to 3 times a day. I feel like dying during, and sleeping the rest of the day away. shits getting in the way of my college career, freaking me out. I dont want to get kicked out on medical leave because of them, im so close to finishing... but reading some of the other comments I also realize how good I have it... good luck to you all

[TheGusman69]

G'day mate,I am 42 have Clustered for around 20 years with cycles lasting between 2 and 6 years at a time. My symptoms are the same as yours except that my agony lasts from between 1 and 9 hrs usually with between 1 and 2 hour gaps 24 hrs a day. The only treatment that works for me is oxygen therapy. after 20 min on raw oxgygen i am ok again with only shadows remaining. i use around 12000 litres a week and is costly but without it i just dont know how i would cope.

[CambridgeHeights]

Luckily that injection works for him. I know that treatment doesn't work for some people. It is supposedly one of the the worst pain possible. Fuck that, I'm wouldn't deal with it. I would just end it if there was no treatment.

[sheila1fy]

WOW DIDN'T KNOW SO MANY OTHERS WERE LIKE ME! I FELL SO DAM SORRY FOR SMALL CHILDREN THAT SUFFER FROM CH, GOD HELP THEM. DO ANYONE KNOW IF RESEARCH IS BEING DONE ON CH, sheila_parrish@yahoo.com. 

[KickinShadows]

31 yo M, episodic. I think it is impossible to describe what it is like, without experiencing it yourself, which is something I would never wish on my worst enemy. I heard somewhere, it is often compared to amputation w/o anesthesia. That being said, I think you've done a very good job with this video, providing a glimpse into what it is like. Just watching this brings tears to my eyes, and makes me anxious. My heart goes out to others, and your families, and loved ones, who live with this.

[Bionuker]

Moving documentary, nicely done. I feel sorry for all the people who have this horrible monster. Hopefully, one day a cure will be found.

[lolita15081985]

im 25 now and i have this monster since i was 17 ,i have it every year and it last for 2-3 weeks,,and i have like two attacks daily same time ,,and it makes me vomiting and feel totally sick ,,and i feel so depressed and i dont have the power to do anything ,not even hang out with my friends,as i feel so afraid to have it while im out :( but with this comments i feel a little support and feel comfortable to know that its not only me in this world :(

[leanmachene]

sometimes people think u are makeing it up or not, i pray for death many times when i have my attacks, question ? when i have a bad attack i seem to lose half the strenth in my left arm, does anyone else get this symtom? im always agruing with the docs cos they want to throw antidipresents at me and im not depressed just in pain, im very reluctant to take drugs the wire the brain differently, when i had amatripplin i had a bad silicon/plastic taste in my mouth i couldent get rid of.

[ltsgoyanks]

@Johaneek: in case you come back to visit, I have tried such a thing.. you cannot sleep through these HAs, in fact it is very characteristic to be awakened just as you start REM sleep. And if you need to catch up on REM and accidentally fall asleep or get drowsy while watching tv for example.. BOOM HA comes instantly. Which is a bummer, b/c I used to love taking that nap after a big meal or something like that. Nothing stops the beast... you have to ride it out each day.

[TheRasibo]

Excellent documentary, I have had cluster headaches for over twenty five years but was only diagnosed last year. When they come they are always 45 minutes long, two to four times a day (being woken by them is mental), for about three months, sometimes twice a year. As a cluster pain sufferer your tolerance to pain increases but be careful not to ignore symptomatic pains; I walked and drove for three days with a painful foot before I found out it was a broken metatarsal bone.

[Johaneeeek]

What happends if you take sleeping pills during an attack? Like strong sleeping pills...put you out for couple of hours

[rmoriarity]

My demon visits me twice a day now. Going on three weeks. Have been getting this for 19 years two times a year. All I can say is for a few weeks out of the year I am a different person and do not look forward to the next 12 hours.

[MSK2232]

how do you get this? is it genetic or what?

[09omac]

I live with beast for as long as I can remember maybe 20 yrs by now. cycle due every 2 years of CH, 8- 10 days and can last 3- 5 hrs of pain. always at the same time of the day. every 2 years but the pain is so severe that I get violent. so sorry for all of us who has it.

[dunskie]

3-5 hrs of the attack? I've never heard of anybody having attacks that last that long. The longest one I ever had in my life is 2 hrs and that was by far the longest. 45 minutes to 1 or hr. is the usual.

I could'nt imagine 3 hrs let alone 5. I would probably have blown my brains out if one ever went past 3 hours.

[clusterheadachesfree]

Hi Mike, I know the cause of the beast , i suffered for 30 years , now I know the cause , I would love to help all pepole sufferring.

Now I am free of all cluster headaches without herbs,without Oxygen,without drugs,without the beast and without pain

Contact me ,dO NOT LIVE WITH THE BEAST GET RID OF IT.

[paperchaser513]

so you got the cure eh?

[clusterheadachesfree]

As Once before Professor Peter Mentioned

"It's like the first time somebody said the earth was round - you have to step back and reconsider," he was talking about the cause of this headaches . Not to the symptoms .

I know the cause of the headaches , I know the beast.

[KingChiliPepper]

@clusterheadachesfree if you're so confident you have the answers why would you not just disclose them right here for all to see?

[clusterheadachesfree]

@KingChiliPepper ,goto my web sit and you will know why ? it is not going to cost you anything, The catch is, the beasts do not have a chance to fit it,that way. as they been doing for last 3 month.

[maladjez]

i have it every couple of months. Last friday, sat and sun it started at 1am..great weekend, it was : / today monday night i'll see what happpens. Good luck to all of you.

[Versilleus1]

Very nice documentary. As a chronic cluster sufferer myself, you have hit what life can be like constantly fighting the beast.

[Masakakihara]

i hit things too :(

too bad it only helps a few seconds

[Buizel2010]

Excellent work bro really proud of you

[maganashi]

Excellent little documentary! It covers the aspects very well, and shows us that we CAN live normal, healthy lives, as long as we can plan for the imminent attacks.

[leap2jump]

well I fully support this guy!! and his family, its great he is trying to lead a normal life as best as he can due to this condition. I am also scared of the beast being a cluster headache sufferer myself I know what he is going through, I to carry the Imigran injection and they do work! its brought great relief to me and my family, good luck m8 and let me know how you get on. I am seeing a specialist in London soon so I will let you know what he says.

[scatterp321]

it could use a few small changes in my opinion the thing is you know its coming it comes every day and not every one has the support around them this guy has i got a nice pile of pills that work sumatriptin or what ever there called but i dont have that inject and fix stuff he has

[barnsie47]

What a great video. I've suffered with these since i was 25 and i'm now 48. For so long it has felt like i was so alone. It's great to see that i'm not.

[muszkavis2]

i`m 25 it has started when I was.. 12. Closed right eye, tears, closed right nose hole, big pain of right side of head. my eye`s exploding. but it leaves after 60 minutes. I don`t take any medicines. I learned to live with it. And if someone says I`m kidding I want that person`s soul to visit my body only once :) it`s like a toothake taken to the half of my brain/face. Can`t drink cause it attacks - 3 per 4 parties. Shit attacks me in the worst places. In a bus, at work, at the parties.greets

[tiarnan76]

@muszkavis2 have you tried cranial sacral therapy?

[itsmecarl25]

@muszkavis2 when my pain is gone all i want to do is sleep.be so tired after it.wish there was a cure.

[ElfenLiedd]

@muszkavis2 I just learnt about this and am curious about how this begins int he first place? i saw a couple of video's and it makes me feel so lucky!

[ClusterHeads]

@muszkavis2 It always happens to me in the worst of places too,the beast is sneaky ;)

[OneTruePharaoh]

I suffer from CH since I was 13 and I am now 32. I ave the higher grade of pain in CH, but luckily I use Imigran subcutaneous injection (Sumatriptan), which magically forces he beast to go away instantly and totally "until the next attack of course!"

[wXLp2oo8]

This video is very well done! And so similar to my own situation, the injections too.

Love from Holland!

[DukeDuncan71]

Well done my brother in pain , well done

[maalstroom1974]

Loved it! First, you are a good cinematographer, and second, it gives a good image of the affliction.

Well done, man!

[psiloscribe]

Brilliant Dan, Thank you. Very well done.

The act of restarting the engine and carrying on with life, after the attack, was quite symbolic of how people with clusters must live their lives.