I woke yesterday and today with cluster headaches. I am an episodic sufferer and the condition started in 2001 with annual bouts that lasted up to 13 weeks each year usually commencing about this time. For the last 4 years I have been cluster free ... until now. I dread this onset. I know I am one of the lucky ones and that lots of sufferers, the majority, experience far worse bouts and over many, many more years without interludes. Still, it is pain that saps your soul.
I was more afraid of the medications prescribed for cluster headaches than the pain so I elected to be med free. I did consider oxygen but, in the end, I decided against that too.
If I feel the onset of an attack I drink a litre of water and exercise. The water helps and the exercise distracts. Usually I end up just sitting like a puddle of pain for up to two hours and feel relieved when it is over.
I am episodic and the headaches escalate to a peak at six weeks or so, usually occuring a couple of times a night (it coincides with rem sleep) and twice in the day. I suspect were I a permanent sufferer I would have no option but to choose a medical option. I know that I will see an end to the bout in three months and then have most of the year free and so it is manageable.
Also I know that cluster headaches will not kill you (they can make you wish you were dead and some people do suicide) but the medications to prevent or alleviate the headaches may well be life threatening.
I am not brave with pain but I think that folk who know it, as you do, know there is a point to which you can bear it, understanding that other avenues need to be explored beyond that point. For now, for me, I can bear it I just dread it.
May I ask why you have decided not to use oxygen? It is by far the safest, easiest (other than portability issues) way to handle a cluster attack.
My husband cannot use most of the usual medications used to treat clusters, vasoconstrictors didn't prevent the attacks and the dosage was too high for his body to handle, they tried topamax, prednisone tapers, even lithium. In the end, anything that affects the brain chemistry seemed to hit him far worse. The "lowest" lithium dose almost sent him to the hospital. So, he stays with slamming an energy drink, if outside of the house, Sumatriptan injects or the preferred O2 method.
The turning point for us in dealing with his headaches was knowing what it was. He'd dealt with it for years, missing work, having doctors tell him it was sinus infections, migraines or even one said "The pain's not that bad." He literally thought he was going crazy until he saw a 1 minute segment on some morning talk show.
That said, while I haven't experienced what you do, I've watched my husband suffer, for hours, days on end. He'd waking up like clockwork every night just to rock back and forth for hours, hit his head with his fists into walls, pull his hair, scratch at himself all trying to make the pain lessen. When it finally lessens enough for him to get to sleep, the night is over and he has to get up and try to function in his zombie-like state. It's heartbreaking to watch which is why I'm so incredibly thankful we always have a tank full of oxygen next to our bed.
I hope you find a method of treatment that works for you soon. I wouldn't wish cluster headaches on my enemy.
Last edited by XLMuffnTop; 09-05-2012 at 10:50 AM.
My daughter suffered 8 months of tension headaches. We had to take her out of school for part of it. We went everywhere and saw everyone. What finally helped was Amitriptyline to help her sleep and, most dramatically, was acupuncture. After having one treatment, on a Friday, she came home - did not reach for an ice bag and went back to school on the Monday. Looking back it seems that a very stressful academic team triggered anxiety and the headache. It eased over the summer and was back in full force when she made the switch to high school.
We also treated her twin brother later for cluster headaches with acupuncture.
What can I say - we have intense kids :-)
From what I researched pure oxygen is also toxic. I am not a *your body is your temple* sort of person so I hope I am not sounding like that =) I am 60 now and so many little things affect me that I am reluctant to tamper with the balance any more than age and weight are doing. I smoked for years and since I gave up (ten years ago) I believe I am seeing the wages of it. To add another buzz to the mix seemed like a risk.
On a practical level, I now live in Germany. I have not looked into getting the oxygen here, although I did when living in UK. I will shamefully admit that, as I seemed to be on a cluster sabbatical, I thought I would not have to delve into that again.
My sympathies and empathies with your hubby. Sometimes rocking, and resignation is all we can do in the end. At the start of a bout I do everything, the whole exercise regime, the prevention things, the ice packs, hot showers, hot packs, treadmill, stepper, skiprope. After six weeks I am just sitting there, knuckles pressed to whatever part of my head or face that is being poked with red hot irons. That is the exhaustion setting in. You cannot easily get woken from REM sleep for weeks and still function well or with any energy.
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The turning point for us in dealing with his headaches was knowing what it was. He'd dealt with it for years, missing work, having doctors tell him it was sinus infections, migraines or even one said "The pain's not that bad." He literally thought he was going crazy until he saw a 1 minute segment on some morning talk show.
I was lucky really, incredibly lucky. During my first bout I was just petrified I was dying in small stages and I telephoned the NHS hotline. I think I got an absolute star of a responder who, once I described the symptoms said "Oh, that sounds like cluster headaches". And I love the internet where I then I found the OUCH forums.
I believe my brother suffered from cluster headaches, I recall his agony and symtoms. This was in the 1960s though and nothing much was known about clusters, especially where we lived in Africa. They drilled his sinuses once, and gave him drugs that knocked him out mostly. He was a wonderful man, bright and funny, who ended up sad and hopeless.
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and, most dramatically, was acupuncture
Froggydawgy, I did try acupuncture and it did not help. I am not at all sceptical, I used to suffer from kidney problems with recurring pain every few months. I tried acupuncture for that, after suffering for seven years with it, and I never again had an attack.
There is so much we don't know about stress related illnesses. They have connected clusters to that, to serotonin problems, to malfunction of the hypathalamus, to problems with a particular nerve in your face. They have associated it with SAD (which makes sense if connected with serotonin I guess plus my bouts occur with the onset of Autumn). But really they suggest all sorts and a lot of it is just hard to prove. I would love if acupuncture had worked, I am a fan.
I can understand your concern as your mention of oxygen toxicity piqued my concern and interest regarding my husband as well. From my husbands adventures in Cluster headache and information gathering, he was on friendly terms with a gentleman who was a Navy aviator and scuba diver and has worked with researchers regarding oxygen therapy for cluster sufferers.
I have provided a link where he discusses oxygen toxicity and how it doesn't really apply to the use of o2 for cluster sufferers. It is a post from late 2007 but all of the information is still valid. I believe my husband has fired off an email to him to confirm as well.
You may wish to continue therapy without O2 but I thought you might like more information.
Thanks so much for that link, I saved it and the other link for therapies in case I need to present it to my doctor here for reference.
I was thinking about this a lot today, having woken again to cluster symptoms, though it aborted after attacking my nose and brow quite suddenly. I wondered if your husband would identify with this artwork I did years ago when I was suffering more constantly. For me it reminds me that, if the clusters are to return, perhaps I should take more action and the subject of oxygen is again fresh for me. I would pursue it.
I just read a study saying that drinking more water proved to decrease the number of migraines/similar headaches in those that consistently get them. It might be worth a try- and it couldn't hurt! I'm sorry you're experiencing them, and I hope you find something to help.
Water can help with standard headaches. I get a headache when I'm dehydrated.
These headaches are in a league beyond even migraines, which I suffer from. When my husband suffers from one, you can physically see it on his face. It is unilateral and for my husband always happens on the left. His left eye begins to droop and water uncontrollably. Then it's the most intense pain... ever. It's described as a hot poker in the eye and women have said it's worse than childbirth. Some poor people suffer from multiple a day, sometimes as often as 8. I actually don't think it should be called a headache as it really gives the wrong impression of what it is, and it's so difficult to understand the pain.
Sinoia: I know my husband has some cluster artwork around somewhere. Unfortunately we have stacks and stacks and portfolios full of artwork. I'll try to find some this weekend.
I actually do drink a litre of water straight off when a cluster starts. It is questionable if it helps or not but, in the case of ordinary headaches which can be due to dehydration, it is recommended.
Mine are right-sided, same thing though, droopy, weeping eye etc. In a full blown bout I usually get attacks twice a night and up to three times a day. During the night the attacks begin with rem sleep cycles. During the day I have no idea what triggers them, they start suddenly and usually last about a half hour to forty minutes.
The one thing about the pain, though, is that you *forget* it, physically, much like a woman *forgets* the pain of childbirth. You know it was excruciating, you know you dread it, but until it happens the next time and you truly remember it, it is forgotten. What gets to you in a bout is the tiredness. Sleep deprivation is a whole new torture on top of clusters. You get so when you look in a mirror you wonder who the heck that grey, haunted person is.
Calling them headaches is a little misleading. They are pain in the head but not headaches as people know them. I used to suffer from migraines, in my teens and they are not like that, those are bad too though. When I have a cluster attack I am always thankful that the suffering lasts, for me at least, usually under an hour, especially at the height of a cycle. The less intense attacks can last longer but I would absolutely dread a full on session for as long as a migraine lasts.
Having said all that I woke at five this morning with just shadows. I am feeling full on positive about it today! =)
I'm a migraine girl, but I can certainly empathize with you all.
This may sound a little crazy, and counterintuitive, but there's this nasal spray called Sinus Buster you may want to look into. It's basically pepper spray for your nose. The inventor is from my area, and discovered it on accident while teaching self defense. He got Mace'd right up the nose during a cluster, and when the burning/tearing/nose watering cleared, his headache had subsided. I tend to save it for sinus headaches and really bad migraines, because I just don't like the burn.
Someone mentioned something like that on one of our forums and there was a mixed reaction. I held off because I could get nothing definitive on it and I am fundamentally a right little coward with stuff like that!
I am going to guess that if I get to the stage where desperation sets in I would go for it, to be honest. At that stage you would actually do most anything for surcease.
Put it on the checklist though, just in case, thanks =)
I just got out of a 2.5 month cluster headache. I've never experience that before! I've dealt with migraines and tension headaches since I can remember, but nothing lasting more thana few days. This summer was INSANE.
Right now I am in the process of finding a daily medicine and episodic medicine. I've tried ten, yes ten, so far. Pamerol at night seems to be helping, but I still can't exert myself without going into full-blown death headache mode. I'm starting Botox injections in my head and neck tomorrow, and praying that helps.
Chickie it honestly does not sound like clusters. Have you been to the neurologist and scanned, because it could be something else and a different approach required?
Cluster Headaches
