Saturday, January 15, 2011

Diary of a Cluster Headache Sufferer

I am, right now, suffering from a cluster headache. No need to explain, you can go the Wikipedia page and read up. Needless to say, it sucks. And unlike migraines, there is no behavior that seems to bring me relief.

I haven't had them in years. I got them in January/February-ish for three years in a row, then four years of nothing, and now they're back. I get them throughout the day, but they usually crop up when I'm sleeping. Pain levels are mild in comparison to others with cluster headaches. My worst pain registers only a 6-7 (if we assume that 10 is agonizing, I-want-to-die pain). It's always on my left temple, but I sometimes feel pressure on my right temple. I have no other symptoms other than stiffness in my neck. I think other symptoms like nausea are just associated with the stress response.

Symptoms:

I've never noticed this in the online literature, but my urine has been affected by whatever this is. It's strongly odoriferous. I've found studies showing that people in bouts of cluster headaches show abnormal levels of various chemicals in their blood, indicating some other underlying issue of which the headaches are merely a symptom.

I eat a complex breakfast every day, take a vitamin cocktail with multi-vitamin, Omega-3 complex, flax oil, vitamin C, and vitamin B. I take huge amounts of protein, fiber, and a small dose of creatine daily. I drink one V8-Fusion every two days. My blood chemistry should be magnificent, but the stinky pee indicates a broadly physiological problem.

Since I've started taking the magnesium supplements, I haven't had any nighttime headaches. If I stay late in bed, I will still definitely get a morning headache, but it will come late. For example, today, I slept till noon and was awoken by a headache, but even now, it is very, very mild. A slight annoyance more than anything.

This is unique, as far as my memory goes, so I'm leaning towards attributing it to the magnesium. When I last had headaches, it was an off/on sort of thing. I either had the headaches, or I didn't. There were no real degrees of suffering of which to speak.

A further update on the Magnesium supplements. I feel confident that the Magnesium is having an effect. I have had one more full-blown headache, and three strange pseudo-headaches. The pseudo-headaches are in the right spot, and feel very similar to a headache, but they're marked primarily by a sense of pressure and discomfort, moreso than any pain. I've gotten three of these in the middle of the night. I seem to skip a morning or night headache, and have skipped both of them once. I have upped my bedtime dosage of magnesium to 800mg. That's 800mg at breakfast, and another 800mg at bedtime.

A couple of 4am headaches have also semi-confirmed that alcohol is a trigger. If I take NyQuil, or any drug dissolved in alcohol, I'm much more likely to have both a night and morning headache.

Melatonin: 12mg daily around 11pm-12am, just before bed. I'm on my eighth day with no sign of significant help at night. During the day might be affected. I'm not sure, and I'm continuing to take the melatonin, but throbs of pressure or sensitivity seem to have been lessened, but only during the day when I'm standing and doing things. Night time headaches still come in full force. NOT EFFECTIVE.

Capsaicin: I am NOT paying $14 for a squeezy bottle of overpriced, holistic nasal spray that's little more than spicy salsa. So I went to the store, bought some habanero hot sauce, smeared some in my nose and drank a quarter of the bottle. No difference whatsoever. NOT EFFECTIVE.

Breathing exercises: I tried Yoga-like breathing exercises. No effect. NOT EFFECTIVE.

Changes: Be it changes in temperature, pressure, what have you. Changes seem to at least alleviate the immediate pain. I once spent 45 minutes just getting into and out of the shower. SEMI-EFFECTIVE.

Caffeine: Caffeine used to have a positive effect on my headaches, but no longer. This bout appears to be immune, but previous years were positively effected by a latte or two. POSSIBLY EFFECTIVE.

Dietary Changes: I lived primarily on instant breakfast for two days. No difference. NOT EFFECTIVE.

Pain killers: I haven't tried prescription level drugs, yet. I have tried all OTC drugs and the only one that seems to have any effect is straight up ibuprofen. I'm 6', 210 pounds, so I take a hefty dose: 800mg, and that's usually enough for me to feel alright for a day, but even if I take 800mg right before bed, I could be up with severe pain one hour later. Preemptive Advil just before bed seems useless. The best use for the Advil is the post-headache neck stiffness and general aches. NOT EFFECTIVE.

Sex/Masturbation: If ONLY it were that easy. No difference. NOT EFFECTIVE.

Magnesium supplement: Magnesium appears to have had an effect. I take a double dose (800mg) in the morning with my nutrient slurry (shake mix, protein, fiber, creatine, flax oil) and vitamin cocktail. I then take another single dose (400mg) at around 11:30pm, before bed. I still had my morning headache, which would hit between 9-10am, but the 3am headache was skipped. I don't know if my headache cycle is merely ending, though. It's difficult to say if this is directly attributable to the mag pills. (Update below)

YET-TO-BE-TRIED CURES:

Oxygen: Apparently pure O2 provides relief for people. I'm going to try this, but I have no clue where to buy oxygen. Dammit. I think I'll have to go to a doctor.

Verapamil: Apparently very successful as a long-term treatment. I might try this.



CONTINUING WORK:

I'm going to switch to magnesium gluconate because of higher bioavailability, but the oxide variate appears to be helping. Apparently, magnesium absorption requires vitamin B, which is gotten from animal products. My diet has been near vegetarian for a couple of months, just because, and I'm wondering if this happens every year. Perhaps my patterns just drop animal product ingestion without my really noticing, which causes B levels to drop, which causes a drop in magnesium absorption.

This makes we wonder if cluster headaches are more common among vegetarians and vegans. That would be an interesting study.



UPDATE: 2/28/2013

I am beginning to believe that my cluster headaches are caused by a much wider underlying physiological state than first believed.

Basically, sunlight, magnesium, vitamin D, vitamin B, melatonin, and testosterone are all linked. A more common symptom of this time of year is known as S.A.D., or Seasonal Affective Disorder, which essentially means Winter Sadness Disorder. This disorder is similarly affected by the listed variables, and much like migraines and cluster headaches, depressive symptoms and bipolarism are frequently comorbid with S.A.D.

I am not depressed or bipolar, but I do feel a lack of vim and vigor, a lack of get up and go, if you will. My exercise level drops off, I have a harder time working, and on and on.

My nightly dose of Magnesium Gluconate seems to keep the headaches at bay, with the only symptom being an occasional sensation of pressure on one of my temples combined with minor neck stiffness. I have started also taking Vitamin D and taking every chance to expose my skin to sunlight in an attempt to boost testosterone levels.

I appear to have my cluster headaches under control, but for many who get them all year, my results may not be valid. I know as far beyond doubt as is possible -- with what amounts to a complex anecdote -- that magnesium helped alleviate my headaches. Unfortunately, because I have hit the point where something works, further experiments will provide no data without me actually doing blood tests.

If you also suffer from cluster headaches in the winter, try magnesium first, then the other listed ideas. If you suffer from cluster headaches all the time, I would recommend as your first step looking into your overall physiology, starting with testosterone levels. I do not think that there is a single "cause" of cluster headaches, and in all likelihood migraines as well, and they are instead a single symptom of broader problems.

UPDATE:
I was just made aware of a website called www.clusterheadaches.com. They have a forum that you should check out if you haven't already done so.


UPDATE: 11/14/2014

I can provide you all with some inside info about this post. Cluster headaches and the change of the seasons into shorter, colder days is undoubtedly linked with cluster headaches. During the summer, the traffic to this page drops off significantly and is rarely among my top pages. Around October, traffic begins to pick up, and by January, this is always my most popular page. Get outside. Wake up early. See the sun as much as you can. It's a depressing time of year. Make the best of it.

22 comments:

invagrantly said...

that seriously sucks, hope you recover soon!

Aaron MC said...

Thanks, Invagrantly,

My headaches always pass within a month or so. I've had them for about 20 days, now, so I should be good soon. Then, eleven months or more of freedom.

Anonymous said...

I've had a chronic cluster headache for over 7 years now. It varies in intensity, but is always there. The Dr's are useless. The best treatment that I've found is a magnesium/ vitamin D3 regimen that makes the pain tolerable. Best to all cluster headache sufferers.

Joseph Micara said...

I am in a cycle now and have had clusters since 1981. This last time skipped three years and i thought i was in the clear. Thanks for your post as I will try the magnesium supplements. I have tried it all and hate to use some meds, they tend to mess up my stomach. Thanks again.....Joe in NY

Joseph Micara said...

I am in a cycle now and need to sleep ! I have suffered from clusters since 1981 and actually was good for over three years. But......they're back. I have tried some other stuff like kudzu root and doses of melatonin and thanks to your blog will try the magnesium. Thanks.

Anonymous said...

I've had clusters since 2004. I've tried the melatonin, magnesium and B complex vitamins and I can stop the headaches for nine months. Now, I'm starting a new cycle and I'll prove the same method again. My neurologist gave me Imitrex but I haven't tried it yet. Hopefully I'll stop the headaches with the same this time.

Aaron Martin-Colby said...

Anonymous,

Thanks for the supporting information. If you try anything else, I would very much appreciate further reports.

barry said...

I've had episodic CH for 18+ yrs. By chance, I'm also a designer-type person.

There's a whole bunch of threads on the forums at clusterheadaches.com about vitamin D regimens that are helping. I'm on the regimen now and I don't know if it's the vitamin cocktails or the verapamil, but something is easing this current cycle I'm in.

Verapamil works for a lot of people. It has some unfortunate side effects (your GI system will hate you) but it's worth it, and it's cheap. Oxygen is cheap too, and it's an effective abortive for most attacks if you get it going in time. For the bad ones, just shoot imitrex (or generic injectable sumitriptan) and the cluster goes bye bye in like 2 minutes.

Aaron Martin-Colby said...

Barry,

Thanks a lot for the info. I wasn't even aware of Clusterheadaches.com. For some reason, it never showed up in my Google searches. How odd and disappointing.

Regardless, I'm going to add the link in my post for anyone else who comes by this page.

Rob Twigge said...

thanks....this truly confirms the testosterone and magnesium theory in my opinion ..i am overdue for my next cluster period and am hoping the beast never shows its ugly mug again i have been casually popping magnesium phosphates and vitiman b as a shot in the dark preventative as well as drinking more water and less beer cutting out dairy except cheese and yogurt and trying! to cut out sugar and gluten...good luck fellow clusterheads

Rob Twigge said...

thanks....this truly confirms the testosterone and magnesium theory in my opinion ..i am overdue for my next cluster period and am hoping the beast never shows its ugly mug again i have been casually popping magnesium phosphates and vitiman b as a shot in the dark preventative as well as drinking more water and less beer cutting out dairy except cheese and yogurt and trying! to

dan pace said...

Clusterbuster.com Stop the pain. Stop the cycle.

Anonymous said...

Great posts. I've found similar results with magnesium supplements - I just went 18 months without a headaches (the longest I've gone in over a decade) and the headaches I'm getting now are mild in comparison. I'm very healthy and eat very cleanly, yet still can't seem to stop them. It seems ridiculous that there's so little research being done on CH's.

Charlotte said...

My headaches are weird because my local Naturopath said they sound more like cluster headaches but so far only two of them were that painful. The first one was back in January. Also I am female. I went to the er for the first one and was diagnosed with migraine. I have normal mri. Ibuprofen is a no go, I have acid reflux. I am breastfeeding too. I recently started doing magnesium along with a bunch of other stuff. Today I started scenar therapy. The magnesium seems to help not only with this but also with restless legs syndrome as well. I think you have to take it for a while though too and I heard the spray works better so I am doing both. Time will tell how the scenar therapy plays out but since I have only had one headachr so far that I would rate above labor pain and it was before I started all the supplements, I am optimistic. I also think nuts, seeds and olives/olive oil aggravate the intensity so I am down to basics, salmon salad with ginger and veggies, I cannot eat fruit. I am not a vegetarian, but at the timr the severe headache hit I was in that arena. But that day I ate sauerkraut, and quite a bit, I read that is bad bad bad for headaches. There must be a spectrul between migraines and cluster headaches.

Aaron Martin-Colby said...

Charlotte,

Cluster headaches are more common among men, but women get them too. As you seem to be encountering, I think that the headaches are part of a broader problem.

Try keeping a food journal. Track EVERYTHING that you eat. Maybe you can find your trigger foods. It may also reveal foods that help.

Make sure to try different types of magnesium. They are absorbed differently. A multivitamin may also help.

I suspect that migraines and cluster headaches are very similar. Perhaps they manifest different in men and women because of our different hormone levels.

Charlotte said...

Thank you. I will try other magnesium if necessary but today has been a break thru. Since I commented today I would have had several bad headaches especially at this time...which I need to be sleeping. No headaches. Just a small amount of needling in the temple but not excruciating. I really think chelated magnesium glycinate is working. It probably works better since I gave up olives and nuts and did the scenar therapy.

Aaron Martin-Colby said...

That's fantastic. It's too bad that olives are a trigger food, because olive oil is like manna. I spray it on everything.

joe said...

What is the scenar therapy ?

Aaron Martin-Colby said...

Joe,

Scenar, or skenar, therapy is a pseudo-scientific procedure that supposedly alters nervous signals within the body to achieve healing. It almost undoubtedly does not work.

Anonymous said...

I know this is an old post but I still want to share my experience as a Horton patient. I am male, 30, Scandinavian, and for me, masturbation is the only effective treatment once the attack has started.

Preventive medication and other preventive methods should of course be tried first but for me none of them works flawlessly.

And now the slightly gross and overly descriptive part: Orgasm itself doesn't help – the idea is to keep yourself near the edge of cumming for as long as it takes for the attack to decline.

The other point about not cumming is that once you get the next attack, it's even more difficult to make things work, if you've had an orgasm too recently. It's damn difficult to concentrate in that situation to begin with, let alone to prolong the operation. Anyway, I have to picture the most extremely arousing things imaginable for me to get it done. And if the attack has been underway for too long, this method doesn't work anymore, because the required concentration is unreachable.

I've gotta emphasize, it's not at all about pleasure but merely the only way to overcome the attack. The whole scheme is totally twisted but what can you do.

Anonymous said...

I'm a sufferer of over 20 years - go to Cluster Busters forum and try their busting techniques - they work. Changed my life

https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl

Anonymous said...

Mate google the vitamin d therapy and give it a solid go. Changed my life from insane trips to hospital for oxygen (it works as an abortive) and mad heavy doses of verapimil and steroids.