Understanding Cluster Headache: A Q&A with Dr. Stewart Tepper

Dr. Stewart Tepper explains the unique primary headache disorder that causes short attacks of incapacitating head pain.

[robertrondholz]

Whoever called this thing some type of headache definitely never had one and because of that people don't understand what we feel. I wish everyone could feel the pain for 5 seconds than they couldn't believe what we endure, I don't need sympathy, just some understanding. I pray for cluster heads.

[AderynBach]

I just started a cycle. It's torture.

[bencostanzo]

As a sufferer, I found this really interesting. These attacks are debilitating, and it’s great to hear there are next gen treatments in the pipeline!!

[ClusterHeadSurvivor]

I am a survivor of cluster headaches. I have survived suicide attempt and 4 brain surgeries.

[byee]

Whenever I tell people I get cluster headaches they look at me like I'm a wuss and say well take some tylenol. When I say instead get really bad migraines even though it's way worse than that they look at me with atleast some empathy. Not many people know what cluster headaches are at all.

[sokbok]

Its definitely not a migraine or a headache, lets call it what it is, ACUTE FACIAL NERVE ATTACKS. This guy gets it and Im grateful. This past weekend I had 2 incredible attacks that lasted over 4 hours and took me beyond any rational definition of pain. The pulses from beyond. Living nightmare level. If you are suffering from this, I recommend counting, over and over. Dont let the pain hijack your inner voice, just count. Dont do it alone, get sumpatriptan nasal spray, emgality, steroids, oxygen. GET HELP. Yes psychedelics work for many people, but not for everyone. Implanting stuff in your brain is an intense prospect. You will be stronger because of these. Grateful for peace. We are in this together.

[jamiecurnock]

I've had chronic clusters for around 5-6 years so i understand the desperation people feel. Mine have finally started to ease into a more episodic pattern but they still kick my ass on a semi regular basis.

For those suffering, stay strong and remember no matter how bad they are or how often they come, they WILL end and you will be able to rest, appreciate the down time and don't let them beat you.

[goingoingone]

Omg it’s so relieving to find people that can understand what I’m going through. These attacks are awful just awful. It’s ruining my life.

[kelly]

I wish my Daddy could have gotten some sort of effective treatment before he succumbed to his final "suicide headache." Days before he shot himself, he told me he would rather eat a bullet before having another headache. I never realized how horrible they really were and my Dad was the strongest man I'd ever known. I never believed that something like a headache could beat him. It breaks my heart knowing how badly he suffered. His doctors pretty much labeled him as a "frequent flyer", someone seeking pain meds and told him there wasn't any treatment for his condition. It seems like someone could have been able to help him get some relief so he didn't have to resort to killing himself. My heart goes out to all of you who have to endure that pain. They say the future for cluster headaches is exciting and promising. Hopefully a cure is on the way!

[kindajabbour]

you are anazing doctor i never heard such valuable infos God bless u

[romanyroberts]

After being misdiagnosed for most of my adult life, I was finally diagnosed last year. Topiramate, Sumatriptan injections and Oxygen have saved my life.

[mirandaanthrop]

I have had cluster headaches for 11 years I am a women a mother and wife. They completely bring down bed ridden for weeks and in and out of doctors office and emergency room. I have had doctors refuse to treat they send me away and I have been accused of being a drug addict many times. It is the worst pain ever and not having someone to back me up is very hard

[thedorske]

Great to see hope on the horizon (treatment wise)...
I just finished a cycle lasted over 12 months. was an extreme one. i've had clusters for around 15 years now.. Any treatments / preventatives i try either dont work or they lose effectiveness quickly. With triptans, my attacks rebound with fury..
Soon ill be going in for ketamine infusions.. one week in hospital..


"You don't know your own strength untill being strong is your only option"
stay strong everyone.

[MSMUPOM]

Most of us will have burned ourselves at some time in our lives, and should be able to relate to this. Even if it was only superficial, you will no doubt remember that sudden, sharp stab of pain that follows when part of the body contacts a hot surface, causing the reflexes to jerk the affected area away from the heat source. Now imagine that at the back of one eye, but instead of lasting just a fraction of a second, it carries on relentlessly for anything from fifteen minutes to three hours. This is a pretty good analogue of a typical cluster attack in my experience; not so much of the nature of the pain, but of its intensity. It's an excruciating syndrome that cannot be ignored and during which it is quite impossible to function normally.

One of the worst aspects of cluster headache is that sleep is one of its main triggers, and sufferers often go to extreme lengths to avoid dozing off. Ultimately it is futile, of course, and this is one of many reasons why the disease is so disruptive and places such a heavy burden on the patient. Even when the episode comes to an end and remission begins, it can still take several days - even weeks - for the body to fully recover from the severe sleep deprivation.

Ironically, despite being one of the most painful conditions known to medicine, the attacks are completely harmless as far as researchers can tell. They cause no permanent damage to the brain or any of the tissues involved. But patients are sometimes so maddened with pain that they inflict significant physical injuries upon themselves, and it should be remembered that the soubriquet 'Suicide Headache' has been earned - not invented. This really is a terrible affliction and it is reassuring to see the medical profession taking it seriously at last.

[Lonelysoulloves]

I've had cluster headaches for 13 years now I just wish it would go away and never come back I'm a big guy and I can tolerate pain but this put me down

[christopherle]

I suffer from cluster headaches and have been for years. In fact, I'm suffering from one right now and I'm searching on YouTube for possible solutions. I can't go to the doctor because by the time I'm able to get in front of one or even be referred to a specialist (which takes about a month), the headache cycle in over and I have nothing to present with. Forget the ER, they'll just turn you away.

All I can say is that after watching this video, I'm so thankful I'm only an episodic sufferer and not a chronic one.

[TACTICOOLJOE]

Didn’t realize other prior experienced these other than myself, honestly thought something was wrong with me. I get them here and there, they last around 1 and half to 2 hours. Worse pain I have ever felt being military and law enforcement. I don’t wish it on anyone. I honestly feel for the people that have it everyday. People who have never had one, do not get it and will never get it. Oh just take some Advil or Tylenol. Nah it won’t work much less phase it. It’s definitely a rare disorder. Glad to see I am not alone.

[alexanderkatsuleas]

I’m so tired of having these headaches every day for years now every morning these headaches wake me up every day at the same time I only haven’t blown my brains out because I have my family my baby to live for

[alexandriaschiro]

I'm having my second episode. First one was a year and a half ago, same season. I didn't know what was happening the first time. I thought I had a tumor or something, it lasted 2 weeks, had 2 moderate attacks during the day and it was worse at night, excruciating. It lasted about 2 weeks. It was unbearable and I've given birth! It was way worse. Having my second episode now, it's been 8 days... 3 a day. 7.5/10 on the pain scale, still awful but not as awful as those night episodes I had. Praying it doesn't get worse. I feel like my ear and eye is going to rupture, but I think it helps knowing that I don't have a brain tumor this time.

[stevebubbs]

Micro dosing of Psilocybin (Mushrooms) or LSD helps with mine
hugely