Anyone else been given the 'gift' of cluster headaches?

I bring this up because I have episodic cluster headaches and a new 'cycle' has started for me.

I've had cluster headaches for 7 years. First time I got one, I was alone, and I thought I was dying. It is a nightmare. For those of you who don't know what they are, it goes something like this:

Arterial spasm and inflammation pushes directly on the Trigeminal nerve, which causes it to grind directly against your skull, around the temporo-parieto-frontal junction. It causes sharp, burning, electric stabbing pain from the top of your head down through your maxilla, sometimes into your teeth.

It is widely considered to be the most severe pain a person can endure. I can personally attest to this. No cluster patient has ever reported worse pain, including broken bones, severe burns, child birth, and cancer pain. (I can't imagine cancer pain, but at least painkillers knock it out.)

Because of the cause of the pain, traditional pain medications don't work. They have something to do with the circadian rhythm, and so they tend to come at the same time each day, in 'clusters'. Hence the name.

As the nerve rubs against the bone, it wears away the myelin sheath, and they become more painful each year.

a 10 on the "kip scale" (made specifically for CH), generally means the patient needs to be to put on suicide watch. People have killed themselves either during an attack, rather than wait out the 2 hours. Or they kill themselves in fear of future attacks. It's not extremely common, but common enough that they used to be called "suicide headaches".
When my attacks it, I can't sit still in the dark like a migraine. I pace, jerk my legs, and hit my head on the wall as hard as I can. It's almost involuntary.
bummer.


Just curious if there's any other clusterheads on here.

reply to post by DarwinVsJesus


Thank God I don't have this. How in the world do you cope? Is there any medication that helps with the pain or prevents the headache in the first place?

Wow, suddenly my sprained back is less of a big deal.

S&F, maybe someone will see this and can offer advice.

reply to post by DarwinVsJesus


A good friend of mine has also had these for many years. This year he has been given bottles of oxygen taken through a mask to minimise the pain and help them pass. Rough guess is that with more oxygen in the blood there is less demand on the body to pump blood which leads to less stress on the system causing the pain.

He also suffers from severe back pain caused by trapped nerves, couple the two and he is completely zonked out.

He recently had injections (into his brain) that have reduced the suffering and they are always an improvement but a bit hit and miss regarding the level of improvement.

The trick is to find a doctor who understands this problem rather than one who only understands the symptoms.

Good luck, keep us posted and I'll chat with my friend for more info.

reply to post by DarwinVsJesus


I too have been blessed with cluster headaches.

And I can assure you that they are worse than childbirth. I had 14 hours of unmedicated back labor, so I know. I saw 3 different doctors to try and get help for these headaches, but all they could offer me was antidepressants and birth control pills.

After much searching, I came across a study, which I will try to find later, that suggested people who suffer from migraines and cluster headaches, often have low melatonin levels. Since there are no known side affects, I started taking it. It could be anecdotal, but I have only had a couple episodes since I started taking it. That's been about 5 years or so.

Good luck with yours. I hope you find something that helps.

I've had them for 9 years. I have the chronic variety so no remission period. They come in high cycles and low cycles for me. In the low cycle I get 2 or 3 a week and they're not as bad. During the high cycle I get them daily, or even multiple times daily. I also have regular "run of the mill" migraines as well, but in comparison those aren't too bad aside from the hour or so of partial blindness I get before I have one. The cluster headaches have no warning for me. I'll just be walking along and bang it suddenly feels like someone stuck a lance through my eye.

ETA: I know we're not supposed to talk about drugs on here but the only thing that has really worked for me was a certain 3 letter substance that makes you see strange things. One dose and I didn't have a single headache for two months.

ETA2: I can usually keep myself in the low cycle with daily vigorous exercise. It apparently works on the same principle as using oxygen. When you really exert yourself it can increase the amount of oxygen in the blood which can in turn help with the headaches.

Unfortunately I know exactly what you are going through. I struggled with the "suicide headaches" for about 10 years. They first began at the age of 18, until that point I had not had any type of headache my entire life. To this day I have never had what most refer to as a traditional headache, only the clusters have come and only on the left side of my head. What you say about them is very true, it really makes one question the limits of pain that a human can endure and for me made me question a lot of things about existence and why it was happening to me. Sweating, shaking, vomiting, loss of vision, and yes strong urge to just make it end all come with the territory. It has been over 5 years since I have had one, after doing many things I still get nerve pain on my left side but have learned to control it.

Its different for everyone but I'll write about a few things that really helped me along the way. One doctor I saw who was immensely helpful said it is all about breaking the cycle or breaking patterns. (My first attack at 18 I got one every single day for an entire summer, it was miserable) As you said traditional painkillers really have no effect. I was given every form of immitrex/maxalt pill, nasal spray and ultimately injectable. However, it would not always work and the side effects from that medication make one feel very strange and even worse at least for me. What finally seemed to help was a calcium channel blocker medication and making changes with my diet. I've found that any increase of inflammation in the body tends to aggravate the nerves. Mine were also particularly disturbing because they would last a very long time unlike most cluster headaches. 8-10 hours was not uncommon, sometimes I would pass out and wake up with the headache still there. Definitely a nightmare. They are also much more common in men and young men. I also had my wisdom teeth removed and a root canal done where the nerve was literally touching a filling. That is the tough thing about these headaches, there can be so many factors. However, the dietary changes for me were a very massive improvement.

I removed dairy and meat from my diet, I found that there are foods which cause inflammation and foods which can reduce it. Balancing pH in the body seems to be important, as is staying hydrated and keeping a semi regular sleep schedule if at all possible. I was also introduced to biofeedback and trigger point massage which I found to help alleviate the tension in the nerves and trying to avoid stress or think positively. I had one spell where I was so afraid to get another headache that I would pretty much bring one on just by thinking about it. I should also add that there are herbals that can't be discussed here which have been known to help. One other poster mentioned one and the other is more common, less intense and green.

I also found this site to be very helpful. It is a worldwide support group for sufferers. There are many shared experiences and remedies and is a great place to help ease the suffering a bit.

ch.com

I really wish you the best man, no one deserves the kind of pain that these things bring, no matter what. Sorry to hear you are entering another cycle. Stay strong man, maybe ask your doctor about the calcium channel blocker if you have not, I know at the time I found it many doctors didn't know or didn't believe it would help. I think it is traditionally a blood pressure medication.

reply to post by smyleegrl



I have sumatriptan injections. They only give you six per month. The six shots cost 1500 goddamn dollars.
I have good insurance though.

It says to only take four per month. (for migraine sufferers) But we clusterheads get to break the rules.

Considering I get four a day, I save it for the bad ones. instant relief plus chest pain. #'s scary strong.

Most clusterheads use oxygen 100% at 15 liters/minute for 15 minutes. I don't because we smoke in our home and I'd not like to risk turning into a toasted marshmallow.

The thing about clusters is that they aren't always intensely severe. Many are though. It starts with an incredibly painful 'stabbing and burning' in one eye, it literally feels like someone shoved a hot iron rod in your eye and is pulling it out (pressure). Every time it comes on I am shocked at how much it burns. Within 10 minutes, you're in a full-on attack. For me, it feels like someone is hammering a hot, electric railroad spike in my skull. The thing that's weird, it actually feels like there is a physical object being forced into my skull, breaking through the cranial floor, and down to my neck, pushing tissue out of the way the whole way down

very weird. And I know i'm going to get them, every day, at 9am, 130-2 pm, 430-5pm, 8 pm, and sometimes another around midnight. I know i'll get them, I just have to wait for them. It's really a bizarre condition.

Originally posted by Roxxo
I've had them for 9 years. I have the chronic variety so no remission period. They come in high cycles and low cycles for me. In the low cycle I get 2 or 3 a week and they're not as bad. During the high cycle I get them daily, or even multiple times daily. I also have regular "run of the mill" migraines as well, but in comparison those aren't too bad aside from the hour or so of partial blindness I get before I have one. The cluster headaches have no warning for me. I'll just be walking along and bang it suddenly feels like someone stuck a lance through my eye.

ETA: I know we're not supposed to talk about drugs on here but the only thing that has really worked for me was a certain 3 letter substance that makes you see strange things. One dose and I didn't have a single headache for two months.

ETA2: I can usually keep myself in the low cycle with daily vigorous exercise. It apparently works on the same principle as using oxygen. When you really exert yourself it can increase the amount of oxygen in the blood which can in turn help with the headaches.

edit on 19-5-2013 by Roxxo because: (no reason given)

My father gets them chronically. I remember once when I was a kid, I watched him bang his head so hard he cracked the basement door. He then broke two of his fingers with a hammer, because that was better than the head pain.

Originally posted by veritaslibertas
Unfortunately I know exactly what you are going through. I struggled with the "suicide headaches" for about 10 years. They first began at the age of 18, until that point I had not had any type of headache my entire life. To this day I have never had what most refer to as a traditional headache, only the clusters have come and only on the left side of my head. What you say about them is very true, it really makes one question the limits of pain that a human can endure and for me made me question a lot of things about existence and why it was happening to me. Sweating, shaking, vomiting, loss of vision, and yes strong urge to just make it end all come with the territory. It has been over 5 years since I have had one, after doing many things I still get nerve pain on my left side but have learned to control it.

Its different for everyone but I'll write about a few things that really helped me along the way. One doctor I saw who was immensely helpful said it is all about breaking the cycle or breaking patterns. (My first attack at 18 I got one every single day for an entire summer, it was miserable) As you said traditional painkillers really have no effect. I was given every form of immitrex/maxalt pill, nasal spray and ultimately injectable. However, it would not always work and the side effects from that medication make one feel very strange and even worse at least for me. What finally seemed to help was a calcium channel blocker medication and making changes with my diet. I've found that any increase of inflammation in the body tends to aggravate the nerves. Mine were also particularly disturbing because they would last a very long time unlike most cluster headaches. 8-10 hours was not uncommon, sometimes I would pass out and wake up with the headache still there. Definitely a nightmare. They are also much more common in men and young men. I also had my wisdom teeth removed and a root canal done where the nerve was literally touching a filling. That is the tough thing about these headaches, there can be so many factors. However, the dietary changes for me were a very massive improvement.

I removed dairy and meat from my diet, I found that there are foods which cause inflammation and foods which can reduce it. Balancing pH in the body seems to be important, as is staying hydrated and keeping a semi regular sleep schedule if at all possible. I was also introduced to biofeedback and trigger point massage which I found to help alleviate the tension in the nerves and trying to avoid stress or think positively. I had one spell where I was so afraid to get another headache that I would pretty much bring one on just by thinking about it. I should also add that there are herbals that can't be discussed here which have been known to help. One other poster mentioned one and the other is more common, less intense and green.

I also found this site to be very helpful. It is a worldwide support group for sufferers. There are many shared experiences and remedies and is a great place to help ease the suffering a bit.

ch.com

I really wish you the best man, no one deserves the kind of pain that these things bring, no matter what. Sorry to hear you are entering another cycle. Stay strong man, maybe ask your doctor about the calcium channel blocker if you have not, I know at the time I found it many doctors didn't know or didn't believe it would help. I think it is traditionally a blood pressure medication.

edit on 19-5-2013 by veritaslibertas because: (no reason given)

edit on 19-5-2013 by veritaslibertas because: (no reason given)

I'm on CH.com, I am so grateful for that place. I eat a vegan diet for ethical reasons. (was at the marineland demo yesterday, that # was CRAZY, john holer is a monster).


I see a headache specialist here in buffalo. I can't take things like verapamil because I have a congenital heart defect. Ventricular-septal defect in case anyone is wondering. That's a whole other terrible thing. Some idiot doctor gave my mother accutane when she was pregnant with me. Now, for the rest of my life, I can't run for more than 20 feet without my heart going ape#. My resting heart rate is 104bpm, and I got teased so much in school for having scars that I was pulled out of gym class.

and I can't sue the people who made accutane. But I guess I'm lucky I didn't wind up with lobster hands or something. (some people did!!)

There's a lot of treatments I can't try. Steroids are out. But I did get the nerve blocker in my skull, it helped for 4 days and cost me 400 dollars. I'm a dirt poor college student, so that's out.

One nice thing my doctor does for cluster headache patients is this:

If ever we're having a severe attack and can't treat it ourselves, we can walk into the busy clinic, no appointment, and get help. He's a good doctor.

Had them since I was in second grade.

Going through my third trial of neuro solutions. I get to start back at the basic anti-depressants and work my was up to Botox after 3 or 4 other medications.

One new thing I haven't seen mentioned here that seems to be slightly helping is taking Magnesium & Riboflavin daily. These are well studied and have been shown to help reduce frequency or intensity and are all natural.

The other really major thing is getting on a proper sleep cycle and making sure you get enough hours in.

Also if you can get a sample/RX try out Cambia. It is a new powdered medicine that you throw in a little water and drink it like a shot. It is one of the few RX that actually has a different ingredient. I am out but I believe it was a form of potassium. I feel like 99% of the RX offerings all have the same exact ingredients so they all do the same thing, not work. No clue on price but looks like it should be fairly cheap & worth a try. The two times I have taken it at early onset it seemed to help a lot compared to anything else.

I have tried Oxygen, Topomax, Maxalt, Treximet, Cambia, Amitriptyline, Naproxen and a few more.

reply to post by DarwinVsJesus


Is that the 'needleless' one that comes in a teal/brown hard case? I just got 2 samples of it and I tried to ask them how much it would cost for a RX and they did not want to say. From the look of the sample case, and the product itself it seems like it would cost maybe $100 but is it really $1500 for you?! That is insane!

reply to post by DarwinVsJesus


Ah sorry to hear that, I forgot the name but yes verapimil is the one I was given. Good to hear about CH.com. It was a huge relief for me at the time I found it there was no one around me who could relate. In hindsight most of my attacks occurred during periods of stress and anything that can help alleviate that seems to be somewhat effective. Yeah my diet is partly based on health but also ethical, I just can't see any reason to eat an animal when there are other choices. I have found though that it is important to supplement certain things. Omega 3 for example. Hemp seed oil is a pretty good vegan source. I'm sure you are familiar with all of that.

Man, accutane is nasty stuff, I've heard way too many horror stories about the damage it has caused. I have the sumatriptan injections as well and yeah the cost is outrageous. I think mine was about $800 even after insurance. What an inflated price for a little plastic box... I too avoided the steroids and also the anti-depressants as another poster had mentioned. Its so great you have a doctor who understands and is willing to give attention. I think most just dismiss this condition as a regular headache and don't sympathize very well. I can relate to the broke student thing also, the healthcare system in this country... well that's a whole other issue.

I'll also second the suggestions of melatonin and magnesium. Those two things have helped me quite a bit health-wise. I had always heard good things about magnesium easing chronic migraine problems and it could have been a factor in helping with mine.

reply to post by ohiwastedmylif


Yeah many of those medications for Cluster headaches and migraines are absurdly expensive. One of the things my doctor gave me in high school was over a $100 a pill. Luckily he had no shortage of free samples, not that they actually worked for me but still. Every time I've tried one of the prescriptions it would work the first time I tried it and then never work again.

I started having them when I was about 10 years old or so. I did not get them very often back then, but I'd never experienced such intense pain.

They came with a vengeance when I became pregnant the first time. My thought was, it must be something hormonal? But I've been checked out many times over the years and the only thing wrong with me is hypothyroidism, for which I take synthroid. I also get my levels checked every 6 months by a reproductive endocrinologist. The endocrinologist is actually the one who explained to me that I was experiencing migraines.

This really came as a shock to me. My symptoms were atypical of what I always witnessed from other sufferers. Once in a while I would get the "suicide headache". But, my biggest complaint was everyday, starting at 3pm(ish), the OTHER symptoms would begin: nausea, lights, sounds, smells, dizziness... I couldn't do anything but sit in a dark quiet room with a cold wet rag on my face. This would last all through the night, every night. That's how I lived my life and figured it would eventually go away. But the headaches did not always accompany the symptoms. So I never considered migraines as the issue. In fact, I think I may have even called him crazy for suggesting it, lol.

Anyway, he naturally wanted to push a pill on me and I objected. It took him sitting there for a good 20 minutes describing the mechanism and benefit to my particular situation. So, I gave it a go. I've never gone back to those issues, until a while back when I tested myself to see what would happen if I didn't take it anymore. I slowly cut my dose back over the course of 3 months and within another 3 months I was right back where I started ~ complete misery. So now I just accept the fact that some preventative medicine is okay to take and there is no shame in that.

I don't know if it would work for anyone else here or if you've tried it and didn't like it for whatever reason. But it may be worth mentioning to your doctor, if you're not getting relief on your current treatment. It has a generic form, even without insurance it's not as expensive as some of the alternatives.

Topamax ~ my life saver! Without it, I would need a lobotomy

I could never quite explain this pain to anyone in a way that they could comprehend. Then the other day as I was drinking an ice drink I had a tortuous never-ending moment of brain freeze. THAT is what the pain is like except amplified to an extent that one can't imagine and it goes on and on and on. On top of the knife plunging into the back of your eye over and over. Thanks for the suggestions on here - going to try the melatonin. Daughter has just started in same eye and same scenario as me.

I've been on topamax. It made everything taste like metal, and I forgot everything everyone said to me.I naturally have an eidetic memory, so this was a bummer.

now I take zonagran. It doesn't help, but it made me lose some weight. I take lamictal as well. and wellbutrin. and adderall. and gabapentin. what a treat.

The thing about clusters is that they are not the same as migraines. I welcome a migraine. It's easy to deal with. Clusters are just the stuff of nightmares.

I started getting them at 17, and for five years I seriously considered drilling a hole in my left temple during each and every attack. I just thought if I could drill a hole in my skull it would make the pain leak out. Glad I never did it.

Originally posted by ccseagull
I could never quite explain this pain to anyone in a way that they could comprehend. Then the other day as I was drinking an ice drink I had a tortuous never-ending moment of brain freeze. THAT is what the pain is like except amplified to an extent that one can't imagine and it goes on and on and on. On top of the knife plunging into the back of your eye over and over. Thanks for the suggestions on here - going to try the melatonin. Daughter has just started in same eye and same scenario as me.

It does sort of feel like a brain freeze. A burning, stabbing, sharp, electric brain freeze where your eye is being pulled out and every bone on one side of your face is being crushed.

really. There is nothing in the entirely world that is more painful. My wife is jewish, and I wouldn't even wish this # on old Adolf.

I've found very high doses (in excess of 10,000 IU daily) of vitamin D3 to be helpful, somewhat.

I don't have an official diagnosis but I suspect it is possible that is what I am experiencing. However, mine is not worse than childbirth, and I hope it never gets that far but they have gotten worse.
I get several different types of headaches, but the ones I suspect are cluster headaches are super intense, sharp, feel like an exposed nerve, but thankfully go away fairly quick.

When I say exposed nerve, I once had an exposed nerve in a tooth and it was the worst tooth ache I ever had. However the location feels like it goes through the back of my head and into my sinus cavities and then up.

I know for a fact that you are not exaggerating when you say you pace and hit your head on the wall. My brother-in-law gets cluster headaches and he told me before that he has hit his head against the wall quite a few times. He said he would do that because the pain of hitting his head actually let him forget about the pain from the headache for a few seconds, which in a sense was actually kind of a relief.

My he and my sister lived with us for a while before moving to the East Coast, and I remember numerous times seeing him sitting outside with a tiny Tupperware container against his right temple. He filled it with water and kept it frozen just for that purpose. He's a smoker, and he said that sometimes the cigarettes would bring a bit of relief, which shows how odd cluster headaches are, because cigarette smoke and ice cause blood vessels to contract, which would make just about any other headache worse. For some reason they bring him a bit of relief.

My sister has told me that she doesn't know how many times he would try to get some sleep at night, but would suddenly jump out of bed, cursing like crazy, and just pace up and down the room. He has told me he gets practically no sleep when he goes through a spell. I don't know how long a spell usually lasts for him, but I remember it seemed like one spell he had lasted for at least 2 weeks, probably longer.

As for myself, I don't get cluster headaches, thank God. But, I do get what is called migraine with aura. It starts out with me seeing a small rainbow-colored squiggly line in the middle of my vision, and then the line grows bigger and bigger as it works its way outward in my field of vision. The odd thing is, when the line works its way out of my field of vision, that is when the pain comes. The only way I can begin to describe it is, just imagine a headache made out of lead. That probably makes no sense, but that what it's like. It is a very thorough pain, that feels like it goes from the outermost surface of your head, all the way to middle of your brain (I'm not saying that's what it is, but that's what it seems like).

It is a very heavy, hard, almost debilitating pain. One good thing about this type of headache is I have about a 20 minute warning, beginning when I first see the little squiggly line. My wife is a certified holistic practitioner, and she made a tincture out of Jamaican dogwood for me. It sure makes it more tolerable. Because of the tincture, I don't get to where I am nauseated to the point where I have to meet the toilet face-to-face, and I more easily lie down and rest until it goes away.

I know cluster headaches are far worse. My wife has told me before that Jamaican dogwood has been known to help with cluster headaches. She made some tincture for my brother-in-law and mailed it to him, but thankfully he has not gone through a spell in a while, and has not had the chance to use it. I wish I had a first-hand account from him about whether or not it works, but at the same time I'm much more glad he isn't going through that pain.