I've been dealing with these headaches for 24 years. Mine are episodic. I will still have doctors tell me I'm wrong and they are just migraines. 1 doctor finally believed me and prescribed me sumatriptan. It took me over 20yrs to find that doctor. Thank you for bringing some light on this rare disease.

Ashley I’ve been a cluster head for 25 years wanted to end my life so many times done everything to help the pain #1 thing that has been a God send is exercise as soon as I feel one coming on 10 minutes of getting your heart rate up and boom gone everytime. Hope this will help other cluster heads. God bless

Thank you Ashley and Lindsay! Great interview!!

Yay for cluster awareness! Thanks for the awesome info. - chronic migraine and cluster patient

I can't ride in a car when I get a cluster headache it's SO fuckin scary. I get extremely light headed and sick like I'm going to puke and the anxiety is on a whole other level. I also had to quit college and many many jobs because of cluster headaches and everyone just thinks your a addict seeking drugs

Great job !

Cluster headaches makes my blood pressure go's up really high with the pain from them

Hi Ashley thought I'd say a quick hello and thank you for what you do. I've had cluster headaches since I was 17 I am now 53, I managed a 22 year career in the British army and some how managed the cluster headaches most times I would report sick with them and be given another strong pain killer which as you know doesn't have any affect at all. It wasn't until 8 years ago that a civilian doctor placed me on oxygen treatment that I've now been able to manage them.

Stop calling it a headache for one. That's a mass mass understatement and pretty much kills off any further interest from people as to what your condition is.

thanks for the nice interview. Looking forward to reading the book and Im inspired to attend Sept. conference to meet others who can relate

Wow! Yer in America!! The first time is frightening. Like Ashley said snuck in,passed by. WOE!!! Then it was on. Tried everything. By the 4th one which was the same day. I went to ER Cuz " am I having am anurizem? Im 62,, ? They didn't know what it was. yeahhh. Who knows what they ER gave me the 2nd time. Did that help? Or did it just stop. So many things to try. When I was having 7-8 a day I turned to Mushrooms. Helped,yes... but now I find ive been using Diclofenac Sodium Topical gel 1% . I rub it all over the pain and nerve .its been helping emensly. Dr. Don't help. He'll give me the injection 1 month not the next. So this cuts the time down probably 80%. God Bless you all ☺🌻

I am chronic. No cycles, all year long. Oxygen is a MUST HAVE, . Find some relief in Chiropractic.

I walk back and forth hunched over, usually I moan and cry and say god help me. I step up and down, rock my head up and down back and forth cry some more. Blow out the buckets of snot that from my clogged nostril. So I do all that and I just keep walking back and forth in the same spot in my house, front door thru living room into kitchen to back door and then back to the front door and I do this over and over sometimes like 200-300 times till it starts to subside a little. I've been to the doctor hundreds of times and taken like every fricking medication there is and honestly nothing has helped.

im going to make a petition to change the name from cluster headaches...the name needs to reflect the pain we go through. had 4 just last night alone. 10 last weekend

Its the worst pain ever.

would love to purchase Ashley's Book but cant find it on Amazon

weird it only happens during winter for me.

Can you please upload a video about hemicrania continua? I was diagnosed with it about 8 months ago and the pain is so severe I actually had to stop going to school my last year of law school. it's a constant pain in my left temporal area and it never stops (unless I'm asleep). I tried indomethacin, botox and steroids injections an so far nothing has helped

Eish it's crazy hey l have been living with cluster headaches since 2014 and l don't take medication coz non of it really works

I’ve had almost the same experience with neurologists. Initially diagnosed with migraines as yes it’s related to your period this was in the Netherlands in the early 2000’s. Mind you I’ve been having these attacks for over 12years now, living of paracetamol and codeine. About 10 years later I see another neurologist (male) now in London UK, and still going with the migraine scenario. Now it’s 2019 living in NYC and in attack again. So I’ll try my luck again and see another neurologist this time a female Susan W. Broner, MD. I’m telling her the same story about the symptoms and how they did changed over the years. However this time I’ve had a picture of what my face looks right after an attack. This showed my bloodshot red swollen eye. Anyway long story short after 25 yrs I’ve got rediagnosed with Intractable episodic cluster headaches. I was started of with prednisone, verapamil and ondansetron for the nausea. I’m in my next cluster right now, and will try the oxygen

I've had mine for 1 1/2 years now 3-4 times a day everyday. Ive tried everything recommended and nothing seems to work. 3-4 times a day im laying on the bathroom floor puking my guts out cause im in so much pain and the last for 1-2 hours at a time. Any suggestions ?

Here's some ways to relieve the pain during the attack. I've had clusters 45 years. Apparently a lot of people haven't come across these. 1. Take a really hot shower immediately. Avoid the hot water directly on the right side of your head for more than a few seconds. Mainly along your shoulder and back. It relieves the tension from your muscles cramping from the pain. I end up in the showers for 10-20 minutes. 2. A hand held battery operated massage machine. Momemedics brand. Force it into your nerves, pressure points, down the neck, down your back inside your clavicle. If you feel a bound up muscle balling up right near the clavicle focus there. As I describe it, this does not remove the pain, but distracts you from it. It's an override, so to speak. It works. It soothes your mind, and calms you. 3. Breath deep and slow. 4. Short imigram with a spray bottle. I crush imigran tablets and mix with water, then spray directly in my nose, and allow it to drip down my throat. I have to take 1/20 the quantity of large tablet, and have far faster relief. It's a far cheaper way than buying the ridiculously expensive inhalers 5. I'm gonna try a novacaine shot today, and shoot key points along the nerves. 6. I found a long time ago with a girlfriend that sexual climax often works to drive the pain away immediately. Sometimes it doesn't, but most always it works magically. I suffer from 3 a day. Lasting from 15 minutes to an hour. My techniques that I've learned over the years have taken me from panic, fear and anxiety during anticipation to feeling control, and calm during and attack and during the rest of my day. The machine and shower also reduces the relentless during a headache. I'm still wiped out physically though for a month. The desperation I experienced years ago, is gone.

Meds doesn't work for cluster headaches at all

Let me tell you something we are gods special friends that suffer terrible pain but in next life we are not ordinary people. For example we could be jesus or apostles

it hurts so bad.. I have one now.. I want to die.