Author Topic: Clustered Headaches  (Read 581 times)

Offline Butcher

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Clustered Headaches
« on: March 08, 2012, 10:17:49 AM »
So after years of suffering an unknown illness, last year I finally got diagnosed with Clustered Headaches, unfortunately my doctor decided I was rich enough to throw all the high dollar drugs in my face which I couldn't afford. For example one which was 9 pills for $600 (I don't have insurance by the way) this was back in December in which I was doing a follow up she offered a sleep study, I guess the idea was in February I would head down to a hospital that was doing research into sleep studies and sign up.
I've tried all the gimics up to this point, changed my diet and exercise daily - even had a local plastic surgeon that had a botox treatment place locally give me a free shot in the head (I paid for the vial which was $90, not the full cost for medical not cosmedic), apparently a case study said it might calm the muscles relaxing the headaches, nothing worked up to this point.

Well for $1200 I figured perhaps a week of sleep study they can help me figure out whats going on with my sleep habits and help correct them, it came back my stress level rose when I was asleep. I can understand, I run my own business and for the past year was on the brink of losing everything - until the last possible minute I got a loan to pay off the almost 3 years of taxes that were not payed. (Long story, but for over 2 years I could not get the loan from anywhere even with perfect credit).

I figured this stress went away after January, but the clustered headaches were popping up frequently and randomly since then. Apparently it doesn't effect me during the day time, but at night time my stress level rises above 80 - if you know the charts a family members death is 100, however I am pulling a record setting stress while sleeping. After the sleep study in done in February to point this out - Clustered headaches tends to be triggered by Stress, so having a stressful sleep is what has been my sole enemy.

Anyhow done I'm ranting, this medical mystery is a total pain in my back side, woke up twice now and had headaches and I slept a good 8 hours last night - fell asleep on my usual time at 1am, nothing out of ordinary - didn't eat anything past 10pm.
JG 52

Offline jeep00

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Re: Clustered Headaches
« Reply #1 on: March 08, 2012, 10:34:19 AM »
Acupuncture. My boss swears by it, for just about any ailment. Can't hurt. Theoretically of course....
Good luck though, nothing increases stress more than knowing stress is causing an ailment.

Bob

Offline RichardDarkwood

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Re: Clustered Headaches
« Reply #2 on: March 08, 2012, 10:46:25 AM »
cannabis will help your problem.
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Offline Butcher

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Re: Clustered Headaches
« Reply #3 on: March 08, 2012, 11:50:16 AM »
cannabis will help your problem.

in california i could of had a card already, Florida - not so much.
JG 52

Offline CptTrips

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Re: Clustered Headaches
« Reply #4 on: March 08, 2012, 11:51:53 AM »

Please don't take this as rude, but are you at least 25lb overweight?

Wab
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Offline Rolex

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Re: Clustered Headaches
« Reply #5 on: March 08, 2012, 12:22:53 PM »
First, it's called "cluster headaches."

They're brutal. I went through an episode a few years back. It lasted for about six months, and I don't think I slept more than 2 hours any night. Here's what I learned.

Cluster headaches are not traditional migraines. Women are more prone to migraine headaches, but cluster headaches are the curse of men. Women rarely get them.

Less than 1% of all headaches, including migraines, are cluster headaches, but they are the most painful. They are relentless and can consume your life. They are so painful that the suicide rate for people with cluster headaches has been estimated at over 50%.

They can be triggered by a variety of things. The best treatment is oxygen when someone feels the onset of one. Any other medication only masks the pain a little.

There are two things that you must stop doing immediately to have any chance of the episode stopping. One is to stop smoking, if you smoke, and the other is to stop drinking. Cold turkey, no exceptions, you must avoid all alcohol. Those two things will increase the chance of the episode ending faster.

I had already stopped smoking and was an infrequent drinker, maybe a glass of something twice a month. That was enough to trigger my episode.

A third trigger is exposure mold. Check to make sure there is no hidden mold in your walls or floors, or on your windows during the winter. Do a thorough house cleaning. Clean all air conditioning and heater filters or buy new ones. Use an air cleaner in you bedroom.

Mine did go away and I've never had a relapse in 6 years. I've been under far more stress since the episode ended, so I never found stress to be a cause.

Good luck. Yes, people do survive them. I didn't think I would at the time, but if you eliminate the highest risk factors that trigger them, you have a better chance of the episode ending faster. Cluster headaches are still a medical mystery and there is no clear-cut diagnosis or treatment.

Offline Tac

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Re: Clustered Headaches
« Reply #6 on: March 08, 2012, 01:56:55 PM »
Strong coffee is also known to help prevent and/or stop these.

First of course, consult your doctor about trying this. If he/she gives the ok then find a Cuban cafe nearest to you and ask them about their strongest coffee and get some. Let them brew you it, you keep it in your fridge.


Offline ap1102

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Re: Clustered Headaches
« Reply #7 on: March 08, 2012, 02:25:47 PM »
Butcher, Mrs Rhino had same diagnosis with cluster headaches for many years. Trips to ER for hvy pain management a couple of times a year. She saw a neurologist last year who prescibed Enderol as a preventative. Thsi all but eliminated her headaches. When she does get the occaisional one she was prescibed a dosage air syringe that gives a dose of Sumavel. Within 2 mins of injection her headache is gone. She has been pretty much headache free for the past several months.  Im not saying it will work for you but you might mention it to your doctor. they also have discount cards for the syringes to offset the copay.

Good luck.

EZRhino

Offline FLOTSOM

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Re: Clustered Headaches
« Reply #8 on: March 08, 2012, 02:45:33 PM »
here is a small story may help you a bit......

guy i knew when i was in federal prison had cluster headaches and they wouldn't do anything to help him but give him Tylenol.

well another guy that was there was a chiropractor, long story short chiropractor cracked the guy up and it resolved the guys head aches, something to do with spinal compressions that were spiking his stress levels through the roof when he was sleeping because of the beds being so hard. his body wouldn't/couldn't relax at night or something like that.

most doctors still look at chiropractors as witch doctors or quacks and very few will recommend you go see one. so you may need to take the step on your own.

don't know if it will help you, good luck
FLOTSOM

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Offline Penguin

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Re: Clustered Headaches
« Reply #9 on: March 08, 2012, 05:16:09 PM »
That's more PT than chiropractics.  The chiropractor was right, though, a bed that is too hard will misalign your spine and could give you sleep trouble.  I've never understood why the man was never formally examined, though.  There's no sense in just torturing the fellow like that.

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Offline eagl

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Re: Clustered Headaches
« Reply #10 on: March 08, 2012, 08:29:58 PM »
A couple of things.  I've had headaches on and off and never really figured out why...  Until a few years ago when I discovered one of my main triggers.  So now I have a handful things I do and don't do.

1.  Never ever eat fish or take fish oil supplements.  These are almost instantaneous migraine triggers for me.
2.  Never ever drink red wine even though I like it, and avoid most other alcohol.
3.  Quit drinking caffeine a few hours before bedtime and make sure I drink plenty of water in the few hours before going to bed.  Dehydration can trigger headaches and going to the bathroom at night is better than headaches.
4.  Change beds or experiment with different bed types, including bed tilt angle (head up or down) until you find one that seems to be better than others.
5.  Change pillow types.  Firm, soft, thick, thin, try various ones for up to a week for each one to see if any of them help.
6.  Don't sleep as long.  I've found that I "feel tired" when I wake up before a full 8 hours of sleep, but if I force myself up at the 7 hour point I actually feel and function better throughout the day.  Sleeping more than 8 hours feels great until the headache starts sometime between 8 and 9 hours, and then it lasts all day.
7.  Try avoiding medications.  Proton Pump Inhibitors (many common reflux treaments) give me night-time headaches that will wake me up at 3am and last most of the next day.  If you take antacids, try switching to a different one even if they are "similar".  Pepcid complete works great for me, but a similar but different one (neither of them are PPIs) doesn't work at all.
8.  If you drink a lot of caffeine at any point in the day, make sure your caffeine level doesn't drop to zero.  If you drink a cup of coffee in the morning, have a diet coke or something around 3 or 4 pm even if you're not tired.  Better yet, ditch all stimulants.
9.  As others have said, ditch all stimulants and supplements.  Some of the "herbal extracts" in various legal energy drinks cause weird side effects.  For example, Ginko Biloba is supposed to cause blood vessels to dilate, which can trigger headaches or other side effects.

I strongly suggest doing a very strict food experiment.  Start on a Friday afternoon, eating nothing and drinking nothing but water for dinner.  Saturday, eat nothing in the morning and then add ONE simple food for lunch and dinner.  Make it something simple like unseasoned chicken breast or something like that.  To avoid weird side effects, take a chewable vitamin (I like flintstones because other ones give me acid stomach) and add a pinch of salt to your chicken.  The next day, add basic steamed white rice.  The next day, add peas or broccoli.  The next one fruit like apples or tomatoes.

You get the picture...  One food for each day.  If you ramp up to a "balanced" meal of protein, starch, and veggie by day 3, you will suffer pretty much no negative side effects other than getting really sick of eating the basic foods.  But you can then add additional foods and see what happens.  If you add a food and get a headache, take a step or two backwards eliminating the most recent one or two foods, and see if the symptoms go away.  I was surprised by reading how many people identify long-standing food sensitivities this way, maybe gluten, egg, or milk allergies, or maybe a reaction to something as simple as the nitrates used as preservatives in processed lunch meat.

Diets like this suck and you need to be careful to add foods in a way that gets you a balanced meal asap, but unless you are diabetic or have other underlying health problems then a day or two with a reduced diet won't hurt you other than having some strange cravings.

Finally, as someone else asked...  If you are overweight then consider getting no-kidding serious about reducing your BMI.  Research keeps coming up with more and more reasons why being overweight is bad, and the latest is that fat cells store and produce excessive hormones and chemicals that trigger abnormal brain activity (like cravings, obsessive activity, depression, etc).  Weight problems can very easily cause problems sleeping.

If all else fails and you get truly desperate, you can turn to the remedy of the ages, good old booze.  I know a few people who have been amnesiacs their entire lives, but they are "functional" because they follow a very strict regimen of 2 drinks after dinner about an hour before bedtime.  It's depressing and no doctor will ever recommend such a simple treatment because of how badly alcohol is abused in American society, but it's worked for hundreds, maybe thousands of years, as a sleep aid, stress reducer, and post-traumatic-event symptom reducer.  Be damned careful though, because it can easily get out of control and should NEVER be combined with any sort of medication that is supposed to treat the same symptoms.  If drinking, you don't get any painkillers, no anti-depressants, no sleep aids, no muscle relaxants, nothing.

Oh yea...  Sometimes the simplest solution is the best.  A simple muscle relaxant like skelaxin or any other relaxant with low side effects and low incidence of addition might also help.  They're not cheap though.
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Offline PR3D4TOR

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Re: Clustered Headaches
« Reply #11 on: March 09, 2012, 05:14:19 AM »
You don't need to go straight to prescription drugs. There are several natural muscle relaxants you can try first. A cup of Chamomile tea for instance is a time honored relaxant and sleep inducer.
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Offline IrishOne

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Re: Clustered Headaches
« Reply #12 on: March 09, 2012, 05:21:35 AM »
i used to have a roommate who got cluster headaches.    he wasnt a drinker, didnt drink soda or energy drinks, ate healthy, was in good shape, and smoked more cannibus than anyone ive ever met.   he was one of those guys who never seemed to run out of energy; was always go go go! until the onset of a headache episode.    then he'd be locked in his room in agony; wouldn't go to work, wouldn't even come out to eat.    i remember thanking god i didn't have that affliction.     i feel for those who do, seems absolutely awful  :(
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Offline Butcher

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Re: Clustered Headaches
« Reply #13 on: March 09, 2012, 08:17:26 AM »
Great information gents, Rolex you hit on a few things - for example the mold, I moved out of my previous house due to molding, I had it checked and re-checked but the house had some molding in it somewhere I was unable to find.

After two tests I frankly moved out of that house and rented it - apparently the "mold" levels were minimum, but I know I was getting headaches still from the house. My new house is in the middle of no where and had no issues since.

I do smoke and drink, I would say a 6 pack a week which I am slowing eliminating the drinking and soon the smoking, frankly I can't put up with the pain anymore. Food hasn't been an issue - I did cut myself off of every food that has been linked to clustered headaches, for example red meat, fish, bread pizza - practically everything that is "delicious" is bad - chocolate is a huge risk, however I haven't had chocolate since I was 15 (frankly don't have an interest for it).

As for Eagl:

You got some great points, I never EVER drink energy drinks unless its strictly Caffeine and Sugar - like Bawls which are high in caffeine or RedLine, nothing that has SALT in it (redbull is pure dangerous to me).
I generally sleep 7-8 hours un-attested, meaning I let myself wake up rather then force myself to sleep or awake - problem is changing any sleep habit is a major cause of headaches.

I basically have a very strict diet right now, and I take roughly 15 pills every day (herbal aids) - muscle relaxers have been my biggest aid so far, any reason I believe a headache is coming on I pop a relaxer and drink a bit of caffeine (never at night time though).

As for overweight, I am 200lbs and 5'10 - slightly overweight, but I have been losing weight due to strict diet and exercise which has been helping me cut down on the headaches, at one point I was getting slammed multiple times per WEEK let alone days.
Now I am roughly once every other week or weeks rather.

Pr3d4tor - I drink Chamomile and Grey Earl Tea roughly an hour or two before bed, it generally knocks me out if not then I use melatonine 1mg (natural herbal aid), only problem is if I don't fall asleep during this time period, it generally WILL lead to a headache.

JG 52

Offline MrRiplEy[H]

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Re: Clustered Headaches
« Reply #14 on: March 09, 2012, 11:16:24 AM »

Mine did go away and I've never had a relapse in 6 years. I've been under far more stress since the episode ended, so I never found stress to be a cause.


But to live without alcohol?  :O

This is one of those cases (at least for a Finn) where the cure is almost worse than the disease! :D
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