Cluster Headaches Community Group
Share information on what is known about and how to treat cluster headaches.
Hello everyone, I've just recently joined Daily Strength and just had a thought to see if there were any Cluster Heads on here and guess what there are. I'm posting today because I've read these threads and I don't see anyone saying what our neuro has told us so I'm going to share because I know this pain and I know ways around it. You will probably think I'm crazy but I've lived with a cluster head for over 10 years now, I know their cycle, I know what it looks like to see the devil and I have held him down as he suffers through the pain so I'm going to see if I can help. As you can probably gather, I'm the wife of a Cluster Head but I've done so much research, I've been to Johns Hopkins and listened to the discussions, I've seen the test groups but we have a wonderful Neuro doc and he has been the difference.
I'm not sure if you've heard this but they generally follow Daylight Savings Time, they are also referred to as "alarm clock headaches" and trust me I know why. They have found that they typically hit the tallest, most fairest of all males in the family (Bobby is 6'7" and fair skin), these people typically have hazel or blue gray eyes. They come in "clusters" that can last six weeks to 16 weeks and each episode, which can happen 6 to 12 times a day for 15 minutes to three hours at a time. There are triggers and I'm not sure but again I've done the research and I keep Bobby away from these things and it helps big time. The following are triggers for him, lunchmeats of any kind, if it ain't real meat don't eat it, salt, soy sauce, cheese, beer of any kind, perfumes, extreme temperature changes, changes in altitude (being on a plane), red meat, pepperoni, smoke, fog from a fog machine (he's a drummer), campfires, and the absolute worst one is HUMIDITITY, OMG this onset is immediate. Cooking on the grill, please back away from the smoke. Oh yeah, and keep your windows closed and turn on the AC because you cannot handle breathing in fresh air during allergy season. And for the love of GOD where sunglasses, direct sunlight will bring on the shadows.....which as you know are bad enough.
There are specific things that people will try to tell you about these headaches, they will tell you that your crazy, that your pain isn't any worse than a regular headache, blah, blah, blah, they are nuts! They have no idea what they are talking about if this is what they say to you. If you go to see a Neuro and they say this to you get up and walk out. I should tell you that my best friend Tim had these, may he rest in peace, and there is real truth as to why they are referred to as a Suicide Headache. So when they hit my husband, it became my duty to take care of these once and for all.
Here's what I've found:
Oxygen Therapy ---- this is and should be your 1st line of defense. Pure 100% O2 and you must have a non-breathing mask (meaning no holes). If you begin immediately at the onset of the headache or if you think "was that a shadow" get to the O2. We do not use a tank because they scare the crap outta me so we have an Oxygen Generator which is great because it never runs out!!! Highly recommended keep pushing until you get a prescription for Oxygen. One other good thing about the oxygen is that you can keep a copy of the script in your wallet and in every car you have so that if you get an attack while driving, you can pull into a fire station show them the script and they will help you, this also works on cruise ships and at Disney World in case you wanted to know.
Verapamil - this drug can be a little crazy but it's a maintenance drug, he takes to keep the headaches manageable. This is not a drug that takes away the headaches this is a drug that helps the Oxygen work and keep his blood pressure regulated.
Topomax - I don't like this drug, not one stinking bit and either did he, we called it DOPOMAX because it made him a walking zombie.
Toradol, Vicodin, Oxycodone, Demoral, Codeine, Percoset, and any regular pain killer - if it helps one time, please consider it a freak accident. These are incapable of stopping this pain.
Imitrex - don't even bother trying these unless it's the injectible because that is the only one that will work. The pill takes between 35 and 45 minutes to break down in your blood, you don't have this much time, the nasal spray hurts him terribly because it's going right to the occipital nerve which is the root of your problem, the injectable gets right in to the blood stream, yes I know it sucks because it's a needle but please get over it, you know how bad this pain in. The needle works within 5 minutes! That's right 5 minutes and I've got my husband back.
Red Bull - this is also unexplained but so true. You need to increase your heart rate as fast as you can, so pop the top and down it, that's right straight down, ok I'll let you stop half way through but I'm telling you these have the ability to stop an attack right in it's tracks.
Red Gatorade - this has the same effect as red bull but it cannot increase your heart rate but it keeps the headache at bay while your searching for your medicine or trying to get to the oxygen.
If your cylce seems like it's been going on forever and nothing is helping, call your neuro and ask for a week of steriods, you need to break the cycle of pain and steriods work, sometimes.
Just so you know, I can sit across from him at the dinner table and see them coming and I can't tell you how many times I've said "Eat quicker, he's here"....now when he's in the cluster he says "only four places tonight huh, no unexpected guests".....His voice changes, his face changes, he gets VERY HOT over his left eye, his eye droops, and you cannot stop the watering, you might as well take stock in Kleenex because you are not stopping that!
Well I've rambled on enough but not many people know what I have found out about these and it's scary, whether it's you, your spouse or your child and if I can help you I will. As a caretaker of a cluster head, this effects me just like him because I'm scared that I will lose another best friend but I won't let that happen. I've danced with the devil and I'm going to make it so he's afraid of me!
Good Luck, take care and if you need me, please post.
Oh one more thing, check out www.clusterheads.com, these are a great group of people that you can join, they have a get together once a year, great people with great advice!
I'm not sure if you've heard this but they generally follow Daylight Savings Time, they are also referred to as "alarm clock headaches" and trust me I know why. They have found that they typically hit the tallest, most fairest of all males in the family (Bobby is 6'7" and fair skin), these people typically have hazel or blue gray eyes. They come in "clusters" that can last six weeks to 16 weeks and each episode, which can happen 6 to 12 times a day for 15 minutes to three hours at a time. There are triggers and I'm not sure but again I've done the research and I keep Bobby away from these things and it helps big time. The following are triggers for him, lunchmeats of any kind, if it ain't real meat don't eat it, salt, soy sauce, cheese, beer of any kind, perfumes, extreme temperature changes, changes in altitude (being on a plane), red meat, pepperoni, smoke, fog from a fog machine (he's a drummer), campfires, and the absolute worst one is HUMIDITITY, OMG this onset is immediate. Cooking on the grill, please back away from the smoke. Oh yeah, and keep your windows closed and turn on the AC because you cannot handle breathing in fresh air during allergy season. And for the love of GOD where sunglasses, direct sunlight will bring on the shadows.....which as you know are bad enough.
There are specific things that people will try to tell you about these headaches, they will tell you that your crazy, that your pain isn't any worse than a regular headache, blah, blah, blah, they are nuts! They have no idea what they are talking about if this is what they say to you. If you go to see a Neuro and they say this to you get up and walk out. I should tell you that my best friend Tim had these, may he rest in peace, and there is real truth as to why they are referred to as a Suicide Headache. So when they hit my husband, it became my duty to take care of these once and for all.
Here's what I've found:
Oxygen Therapy ---- this is and should be your 1st line of defense. Pure 100% O2 and you must have a non-breathing mask (meaning no holes). If you begin immediately at the onset of the headache or if you think "was that a shadow" get to the O2. We do not use a tank because they scare the crap outta me so we have an Oxygen Generator which is great because it never runs out!!! Highly recommended keep pushing until you get a prescription for Oxygen. One other good thing about the oxygen is that you can keep a copy of the script in your wallet and in every car you have so that if you get an attack while driving, you can pull into a fire station show them the script and they will help you, this also works on cruise ships and at Disney World in case you wanted to know.
Verapamil - this drug can be a little crazy but it's a maintenance drug, he takes to keep the headaches manageable. This is not a drug that takes away the headaches this is a drug that helps the Oxygen work and keep his blood pressure regulated.
Topomax - I don't like this drug, not one stinking bit and either did he, we called it DOPOMAX because it made him a walking zombie.
Toradol, Vicodin, Oxycodone, Demoral, Codeine, Percoset, and any regular pain killer - if it helps one time, please consider it a freak accident. These are incapable of stopping this pain.
Imitrex - don't even bother trying these unless it's the injectible because that is the only one that will work. The pill takes between 35 and 45 minutes to break down in your blood, you don't have this much time, the nasal spray hurts him terribly because it's going right to the occipital nerve which is the root of your problem, the injectable gets right in to the blood stream, yes I know it sucks because it's a needle but please get over it, you know how bad this pain in. The needle works within 5 minutes! That's right 5 minutes and I've got my husband back.
Red Bull - this is also unexplained but so true. You need to increase your heart rate as fast as you can, so pop the top and down it, that's right straight down, ok I'll let you stop half way through but I'm telling you these have the ability to stop an attack right in it's tracks.
Red Gatorade - this has the same effect as red bull but it cannot increase your heart rate but it keeps the headache at bay while your searching for your medicine or trying to get to the oxygen.
If your cylce seems like it's been going on forever and nothing is helping, call your neuro and ask for a week of steriods, you need to break the cycle of pain and steriods work, sometimes.
Just so you know, I can sit across from him at the dinner table and see them coming and I can't tell you how many times I've said "Eat quicker, he's here"....now when he's in the cluster he says "only four places tonight huh, no unexpected guests".....His voice changes, his face changes, he gets VERY HOT over his left eye, his eye droops, and you cannot stop the watering, you might as well take stock in Kleenex because you are not stopping that!
Well I've rambled on enough but not many people know what I have found out about these and it's scary, whether it's you, your spouse or your child and if I can help you I will. As a caretaker of a cluster head, this effects me just like him because I'm scared that I will lose another best friend but I won't let that happen. I've danced with the devil and I'm going to make it so he's afraid of me!
Good Luck, take care and if you need me, please post.
Oh one more thing, check out www.clusterheads.com, these are a great group of people that you can join, they have a get together once a year, great people with great advice!
My doctor told me NOT to use oxygen, but I'm not sure he's right. You're right, the verapamil is maintenance; the imitrex just minimizes the pain to barely tolerable. My partner, however, last night suggested I try something like red bull. Then just this morning, trying to find out about the relationship between daylight savings time and cluster headaches, I see you suggested red bull. I'll buy a bunch of them and keep them with until the devil goes away again.
I'm now 47 and have suffered cluster headaches since I was 16. The cycle lasts 2-3 months, then they disappear for about 3 years. My last attack was about 3 years ago. Then in early January of this year, the "shadows" started and by mid-Feb., I was having them once a week.
Anyway, I will print out your suggestions and take them to my doctor...and if this goes over 3 months (which it rarely does), I'll try steroids. thx, -russ
Regarding your doctor's recommendation NOT to use O2, I've never heard our Neuro say that, he's told us that's the 1st life of defense always and generally 95% of the time it stops the headache immediately, the imitrex shot which is now available in generic WOO HOO, is injected into his thigh the other 5% and within minutes, no joke he's back to normal.
Good luck and I'm here if you need me :)