Does anyone have a headache disorder

In My Humble Opinion
1

Migraines, clusters, etc.

What are they like? I have no idea or frame of reference since I have not had one. I have known people with migraines, but have not had anything nearly as bad in my own experience, so really wouldn’t know how to relate to the debilitation, nausea and disability they cause.

How do you handle a full time job if you have a headache disorder? The 3 people I know of who have migraines all work full time, but they are able to take time off when they are sick. What do you do if you have migraines striking all the time and you are out of sick days?

Do they respond to medical and alternative treatments? Are they ever minor enough you can still do day to day activity, or are they always debilitating?

2

About three weeks ago, my 25yr old son (who is staying with me at the moment) developed a blinding headache centred mainly around one eye. It lasted about 2 hours then miraculously went away. A few hours later, he got another one. Since then he’s had 3-5 such attacks every single day.

The pain absolutely knocks him out. I have in all my considerable years never seen someone suffer as much, and OTC medications have little-to-no effect. We took him to Emergency at our local hospital thinking he may have been having an acute glaucoma episode (runs in the family) but all tests came up negative and they sent him home with some stronger meds.

Since then we’ve heard about Cluster Headaches, and the symptoms described mirror his to a tee. Luckily he has been pain-free for the last 48 hours, but we have an appointment with the local GP this week to undergo further investigations. Hopefully they will be able to offer some prophylactic treatments AND some meds to seriously counter the pain he feels during an attack.

There is no way in hell that anybody could do any purposeful activity while having one of these episodes. All my son can manage is to grunt that, “It’s happening again mum” and I watch on helplessly while he writhes and cries until it’s over. Sometimes it lasts just 1 hour, more often it goes on for two or three. It’s agonizing to watch, I can’t begin to imagine how he is suffering.

3

Oxygen therapy is supposed to help at the first sign of a cluster headache. I have also heard of calcium channel blockers and beta blockers for that disorder.

4

I almost always have a tension headache, sometimes very severe. I also have an occasional migraine . . . much less since I started taking feverfew.

If you’ve never had a migraine . . . it is so much more than a really bad headache. It feels like someone’s hitting your head with a hammer, and the pain can extend through the entire head, back of the neck, shoulders and upper back. It’s a constant pounding, and is exacerbated by sound or light. You just want to crawl into a dark, quiet place and sleep it off . . . or bang your head against the wall, hoping to become unconscious. I once had one for 10 days, and it was Hell.

5

I’m sorry I wrote a lot. Just felt like I could try and describe it, but probably not necessary. But hey, you asked.

As a kid, I would get migranes, and I’ve had the fun of also experiencing cluster headaches. Only a few times have I gotten a stress headache.

Migraines for me I’ve had since I was about 7 years old. I can usually tell when they’re coming because I kinda feel “weird”- not really descriptive I know, but it’s just this sense of “huh… that’s weird”, and also I’ve had a headache of some random sorts usually during the day leading up to this. If I’m doing something or trying to concentrate I can miss that feeling. Then the pain starts. It’ll start up by my left side of my head, by the left temple, and I get this slow crawling feeling down towards my eye. It’s a slow feeling, not quite a throbbing or such, just… it’s coming. When it reaches my eye, by that point, I know what’s coming and it’s not so fun. That’s when this crawling feeling sharpens up and basically becomes like… well a dissecting needle. Basically instead of feeling it going down and across my face, from temple to eye, it feels like a straight line- from the point of my temple to the back of my eye. Just this INTESE FOCUSED Ice Pick of pain.
My vision will get squinty, and sometimes blurry, tears can come out of that eye- and it’s all totally localized, if my right side feels anything it might be a mild headache at best. But the left side is SUCH intense focused pain in a straight line just stabbing into my eye from outside the skull. I’ll also get kinda queasy, now that weird feeling is gone, and now I just feel pale, floppy, and sick. I don’t want to be wherever I am, and I just want to go away. And I know what’s coming.

It sucks, I become really bummed out, light is TERRIBLE. I shun the light, I want to crawl into a dark cold room, curl up into the fetal position and just cry. Even now in my 20s a real tough migraine will still cause me to do that. The pain sorta overrides my logical centers- I don’t care about what I’m doing, I don’t’ care who is talking to me, if I’m in class or whatever I’m doing. I just want three things: Darkness, being alone, and STOPPING THAT PAIN.

Anything else is not important to me at that point in time. I just isolate myself usually in the coldest part of the room, house, whatever and just try to wait it out. I’ve had to wait hours, and it just feels like hours and hours and hours. I try to want to sleep, push against the ground, the walls, anything to stop it, and that doesn’t help the pain. When I was a little kid, they would send me to the nurses office and my mom would have to come and take me home, and the entire time was just crying pain. As I got older, I knew what’s coming, but I still can’t help but tear up at the pain.
I’m a person who is terribly afraid of death. I don’t want to die, and I have no desire for any activities that would bring me closer to dying. If I was to become on life support and a vegetable, I wouldn’t want someone to pull the plug on me. That’s how terrified of meeting Death is for me. It’s one of my greatest fears. However, and i’ve noticed this repeatedly as I got older- while I’m waiting out the migraines- this is the only time where I would actively contemplate the idea of suicide. Death would at least be no more pain in that case- it’s the one time where I would fully understand wanting to die- and when I was a teenager, I kinda hoped if I ever had to choose to die, then i’d want myself to be in THAT much pain, because that would be the only time where I’d feel that dying would be a sweeter alternative. But in the end, I know this is temporary. And so we wait it out.
With medications, i’ve had two kinds growing up, both of them similar mechanisms- basically when I have that aura feeling, that something weird’s going down, OR if I get that creepy crawling painful feeling, I’m supposed to take the medications. The first ones I had as a kid, I can’t recall what they were, I only took them maybe 3 times or less all around 2nd and 3rd grade. All i know is they were pink/purple on one side, and Purple on the other- and looked like the size of tums. I got to take one of those in the nurses office when my mom came and got me to take me home. And by the time we walked out of the office to the car- I think I was feeling pure euphoria. Life was wonderful beautify, and I don’t think I’ve ever felt so happy and silly as I did then. My eye still I recall tingling and feeling odd- but there was NO PAIN. It was pure pure happy bliss. I think I was completely stoned out of my mind or something. I never really got that medicine afterward (but my parents said I did try to fake having migraines in an attempt once or twice to get that, but they could tell I was easily faking it).
Now, I’ve been on on several drugs, and they’re not as awesome, but get the job done. Basically- I get the headaches, that weird feeling, I pop the pill, and I still feel shitty, I want to be alone, I’m depressed, queasy- but I get sleepier and sleepier, more and more sleepy…
And then I pretty much go into a deep sleep for like 4-8 hours, and wake up with hopefully the migraine passed. And that’s about it. I basically sleep through the worst of it, and I’m up and exhausted, but I don’t usually have any more of a headache. Just… groggy and kinda tired, basically the feeling of oversleeping.

Those though are just my worst migraines. They’ve really dropped off in severity since high school (where in high school and earlier I’d get like 2-3 of those a month on average but that’s not really true, they tended to come in groups, so if I got a migraine, the odds of me getting another one in the next week went up. I tended to get them seasonally with basically like 5-10 migraines in 2-3 months and then nothing for a while, and then back again. Usually more in the spring/early summer time, with also some in the fall/winter transition as well.
I still get smaller migraines, and those I try to catch early- Excedrin extra strength early on like in that aura phase, de-stressing ALOT more my life, and basically trying to keep it calm and under control, and I can avoid most of the curling up and dying sorta feelings. If anything I’ll just have that needle point to the back of my eye, I can point you to it basically, and I’ll still have 0 attention span for the time period, but I’m functional. But basically I’m just holding on and just trying to focus on getting through everything- every task becomes super arduous and annoying from gripping the pencil to writing my name to trying to focus on the question while the pain tries to distract me…

It’s not fun.

I’ll make another Post about my experiences with Cluster Headaches, and i’ll be shorter.

6

I have been tentatively diagnosed as having cluster headaches.

What are they like? They tend to strike around 3 or 4 pm. Usually I start seeing dancing lights pinwheeling around my peripheral vision. It happens in both eyes, but usually much stronger in one. I can see the pinwheels better if my eyes are closed.

Then the pain, which is usually only on one side, and whichever side it is will continue to have the headaches for the duration of the cluster. The pain feels like a sharp, cold rod is piercing my head from my eyebrow through to the base of my skull. My eye on that side will tear up. The nausea is sudden and intense. It increases if I move my head or if I am in bright light. Flickering light will make everything ten times worse. Strobing light makes me vomit (this is true of me all the time, not just when I have a headache). I usually notice that my hands are really cold, and sometimes I get goosebumps.

It lasts anywhere from 15 minutes to 2 hours, then it goes away.

My longest stretch was having this every day for two weeks. I have not had an episode for (I think) over a year. knocks on skull

I got migraines as a teen and young adult. There are similarities, but for me migraines were even worse. I’d get blank spots in my vision, distorted vision, and the sensation that my head was puffing up like a blister. Very nasty.

7

I think all headache disorders exist on a continuum from annoying to totally disabling. I have migraines, and some of them are so bad that you can do nothing but lie in a dark room, vomiting occasionally. If someone were to have these regularly (say, a couple of times per week), then I don’t see how you could hold down a job. (I had such headaches once or twice a month for several months, when going through a particularly stressful period of my life, and it did interfere significantly with my work.) But my headaches settled down to where I can function most of the time, even though I may be in some pain (sometimes significantly uncomfortable). But even a minor-league headache will hurt my productivity to some extent. Thank God I finally found something that really helps my headaches (a particular beta blocker), because they were getting worse as I got older, and I was beginning to worry about my career (not to mention my sanity).

8

My god… that would suck. Mine come and go over the days, but never had I had a continuous one that was more than a Day. :frowning: That is NOT something I’d wanna experience…

The Clusters- these came to me after my migraines faded (in my early 20s). I currently have maybe 4-6 migraines a year, usually whenever I visit my parents home not for the holidays, but around that time in the summer. June is a notorious month for me.

But clusters- this was my junior year of college summer where I came home. Basically for the entirety of June I was getting daily headaches. They would feel like migraines in the weirdness feeling, but no crawling sensation this time. Instead I got intense pain. Pure pain. On both sides of my head- and then just around my head, I would immediately get tense and frustrated. That was the biggest thing- the Cluster headaches vs. Migraines- that was the biggest difference for me. Migraines I wanted to curl up and hide. Cluster headaches… made me VERY aggressive (which I’m normally NOT at all). Intense RAGE and frustration at the pain. Just- WHY? WHY? The hell is this happening, and why the fuck are you looking at me like that when I’m writing here with this pain? I would become very irritable, to the point of snapping and yelling at my parents who were trying to help me- but I was just so angry- so frustrated- because these things were just… everywhere. It wasn’t like my migraine on one side, no this bastard came from all angles- and just… disgusted me. Migraines always depressed me and filled me with apprehension at what was to come. These headaches just… pissed me off and just felt like no pattern to them. And they would happen EVERY day it would seem, just right around the evening- also, I rarely got migraines in my sleep. But clusters- I would apparently wake up screaming in pain at these things. Just peacefully in a dream, and then very intense pain just pulling me away and just… blah.
It was not fun. And nothing helped- the Migraine meds wouldn’t really help (the ones that put me to sleep sucked, I would become sleepy and in PAIN just… a sucky combination), the Excedrin and all that- just sugar pills. I’d take whatever was given to me, and just angry that nothing was helping, tears in my eyes and just in pain…
The only thing that really helped- was early at the onset of these things, I would go outside, crack open the window or go out at night and just start sucking in cold air. Just breathing heavy and deeply (this was suggested to me by my uncle, who was visiting and like 2 weeks into this intense pain). And it sorta helped, but it wasn’t a relief sorta thing, it was more preventative. It would stop them from really coming, but if i was already in pain, it was basically just a distract or to try to feel like i was doing something to help the irritation.

The fresh air actually started to work, the latter parts of June basically I was going outside though every evening because all day the headaches were worsening until I did that and just spent like 30 mins outside and feeling better.

Over time I realized, I never had these sorta of headaches in the past except when I came home, and never this intently, and it kinda hit me- at home I was a total homebody- i rarely would go outside, just stay in and be a lazy kinda guy. While in college I was walking around, getting to class and such. Getting air at least. So I started during the afternoons finding excuses to go out and exercise, to run errands, anything to be outside for a while. That actually brought me the best relief. The headaches started to fade, and basically since then I’ve tried to be more active, and getting out every day for 20-40 mins or so at least, taking deep breaths and basically telling myself I’m just out there trying to “Stop and Smell the Roses” so to speak. Because if I don’t, I’m kinda worried about getting those clusters again. I rarely get the clusters, and don’t really notice them as much, but if I feel like I’m having one, I def. just try to prevent it with extra strength Excedrin or such, and basically go outside and try to walk it off. Usually it helps.
Also, one final anecdote- the worst headache I’ve had probably was that summer- where I was sleeping, woke up with a cluster sort of headache, and then got that INTENSE spike into the eye- and basically had the cluster stress me out to where it induced the migraine. THAT pissed me off and depressed me and it was just weird. That feeling of intense Rage and Intense sadness and pity at myself. That was when they gave me my migraine medication- and it helped with that slightly, the pain was dulled on the eye at least- but the cluster just kept coming and coming and the depression was there too. I basically was ready to give up- I just cried and yelled both randomly that entire night into my Mom’s lap I believe. I was 20 years old or so. Kinda embarrassing, but at that moment I didn’t care. I just wanted something to comfort me and yet I was still so angry as well, basically switching back and forth and just feeling exhausted by it.

So yeah. Migraines not fun. Clusters not fun. Tension, only once or twice, they’re annoying but I don’t think I get them badly. Headaches- i get them every so often, don’t really notice them too much now, or they’re just bearable and only if I think about it do I even notice that I have them.

Thanks for letting me share.
-R

9

I’ve had migraines for 25+ years.

Hormonal, Barometric, Tension and food triggers. ( and few others.)
The best advice I have for you is to** learn what can set them off and don’t do it**. Seriously. If one does start, you need to stay ahead of the pain and cut it off before it sets in. It is thought that a migraine, or cortical depression, is like a rain cloud in your head. Every five minutes it spreads an inch or so. Cut off the storm before it is like a mushroom cloud.

For me, I keep baby aspirin in my purse for such occasions.

I’ve used shots to abort the migraines, which work wonders, but getting over the emotional thing of a quick shot to myself is very hard.

10

Yes, finding the triggers is the most important thing. For me, it’s fatigue. If I’m short of sleep over a couple or three nights, I’m likely to develop a migraine. If I’m on the edge of one, then wearing a tie and staring at a computer screen may push me over the edge. Since I’m a lawyer who drafts a lot of documents, these are both problematic … :rolleyes:

Various things help to avert it - taking a break, drinking a plain soda or ginger ale, and curiously, coffee or tea. For some people, caffeine are triggers, but not for me. They actually help avert it. Dunno why.

If it’s low-level, I can keep working, although not at my peak of work - it’s difficult to work on a written document, express myself in writing, and so on, so I tend to switch to correspondence, reviewing a file or something, instead of writing.

I occasionally get ocular migraines - queer flashing at the edge of my peripheral vision. For some people, that’s a sign that a major migraine is coming, but for me it’s never gone beyond the ocular effect.

If a migraine develops, the simplest thing is to go to bed. Longest I’ve been knocked out by one is two days. First day was spent entirely in bed, the second day I was able to get up and about, but I felt burnt out.

Fortunately for me and my job, since I know getting regular sleep is the best preventative, I don’t get them that often.

11

+1!

I took care of the hormonal cause, have barometric, tension and food triggers left.

I always carry at least 1 dose of frova with me at all times I am out of the house.

I know by what my aura does how severe the migraine will be if I don’t try to get it before it hits. I absolutely HATE the ones that sneak in while you are asleep, so you wake up with it in full on pain mode.

Take a class in relaxation techniques if at all possible. Even if stress is not a trigger, relaxing can help you focus and help in dealing with the pain anyway.

Always carry a small bottle of water and a light snack with you, oddly enough something as silly as low blood glucose can actually trigger a migraine. I will also sometimes carry one of the tiny perfume/essential oil samples [i think it is a 1 cc vial, or maybe a half cc vial] of fiore di sicilia flavor extract with me, it sort of covers bad smells or at least distracts me from them as sometimes a bad odor in the air can predispose me to getting a migraine.

12

This has been my biggest problem - I wake up with them, and can’t make rhyme nor reason out of anything I’m doing before I go to bed each time it happens. I can’t for the life of me narrow down the triggers. I have started writing down what I can remember the night before, to see if there’s some kind of pattern, but I haven’t found it yet.

Excedrin Migraine and Excedrin Tension usually take care of them. Plus curling up in the fetal position and whimpering.

13

I have a lot of the same triggers as others on this board - barometric, hormonal, food (at certain times of the month) and naturally too much sleep, too little sleep, tension (not as often though), some smells.

There are some good descriptions on this page. I will add that sometimes the day before I get one I am very clumsy and after it passes I am usually really thirsty.

I have tried the beta-blockers and topamax (first one didn’t work and the second caused an anaphylactic reaction).

If I take a Zomig, or three extra-strength Advil in time, I can usually head it off at the pass. Usually it’s just a “run-of-the-mill” migraine which while terrible, is barely tolerable by laying still in a cold room in the dark.
About once every few months I get what I like to affectionately call a “Super-migraine”. Those I have t go to the hospital for as they cause constant vomitting and I scream the whole time.

My job is extremely good at being flexible. My headaches are documented, so they haven’t given my a super hard time if I let them know that I need a few hours for the meds to kick in… so far.

I do know that my boss is unusually understanding, and could decide to be tougher about it at any time.

14

Cluster headaches. O.M. F’ing. G.

There have been days when I would gladly pluck my left eye out with a spork. I really mean that. If it would stop the pain, I’d do it. Heck, if you told me right now that if I did so I would never have another one, I’d say hand me the plasticware.

And yes, I’ve gotten out of bed, fed and dressed the baby, dressed myself, and gone to work in that amount of pain. I can’t say I had a particularly productive day, but I did it.

At some point of maturity you have to view pain from the narrator’s chair. It’s like taking your temperature when you’re sick: It’s a measure of how severe the problem is.

With headaches, the scale is off, and you recognize that when this particular thermometer says the fever is 103 degrees F, it really only means 99. You keep moving, take your meds, drink lots of water, and hope it’s a short one.

Now migraines are different, as they tend to blind me. So I can’t drive, and can’t do much at all. On those days I call in sick, and make up the hours on a better day if possible.

15

I have a couple different types of migraines. Some are the “kill me know” type. I know that if I had to deal with that type of pain constantly, I’d kill myself. Those are very rare and getting rarer, thank God. Then I have the hormonal ones, whichI just thought were chronic headaches that would last for weeks. I’d take ibuprofin after ibuprofin. Each dose would knock the pain back a little, but you could feel it back there, waiting to rush in.

Fortunately, Maxalt does a good job for me. It has some side effects, but not really bad ones, and the next day I have the migraine hangover. I tried Topomax, but had a strange reaction where I didn’t sleep ofor 12 days. My doc prescribed sleeping meds to take with it, and still no sleep. People often don’t believe that I went that long without sleeping, but I can honestly say that, at no time in the 12 days, did I have any sensation of either drifting off or waking up. I got more incoherent as time when by, meanwhile the nurse was telling me to just keep trying a little longer. Finally I stopped. I just couldn’t take it any more.

StG

16

I get migraines, usually triggered by barometric pressure changes, flashing lights, glare (like on overcast days), sleep disruptions and salty foods.

I’ve gotten pretty good at catching them early, so I can usually take OTC stuff to at least keep the pain to a minimum. If I don’t get to it in time, though, I’m in trouble. That’s when I need to hit the Imitrex.

What they feel like: intense pressure and pain from the bridge of my nose to my temple. Light, sound, and sometimes even touch can be excruciating. Things smell too strong and make the nausea worse. Food is completely unappealing, and tastes weird even if I manage to eat something. A lot of times I’ll tense up so much that the pain will extend to my neck, back and shoulder.

I don’t get auras, but I’m a synaesthete (music triggers color). I experience stronger synaesthesia and intense creativity (I’m an artist) when I’m having bouts of migraines. So I have to admit that there are payoffs, small though they may seem when I’m in the throes.

I miss the occasional productive day because of headaches, but usually I can muddle through. When I can’t, taking drugs and sleeping it off in a cool, dark room will usually do the trick.

One thing about taking Imitrex…the packaging was designed by a sadist. It’s in a blister pack with TWO layers of cardboard over the foil. So, imagine yourself with a blinding headache, eyes watering, nauseous. You’re in the bathroom, fumbling around in the dark. First you have to peel back one cardboard layer (and I have flimsy fingernails, so that means fumbling around for tweezers and using those to peel that layer back). Then you have to push that little pill through the cardboard and foil layer, try not to lose it when it flies out of the package and then finally manage to swallow it. Oh yes. I’ve taken all the layers off except the foil.

17

This. I didn’t mention these two things in my post, but these are both part of it too. That sense of the pain hovering, waiting, not really gone but just shuffled to the back temporarily. I hate that.

And the migraine hangover. Yeah. I don’t get it all the time, but when I do it sucks. Feeling wiped out and just kind of blank for a whole day after–almost as bad as the headache itself.

18

I was just diagnosed with cluster headaches today. I’ve had them exactly 8 days apart since the first week of November. :frowning: I got a prescription for the next time it begins (likely sometime around Tue/Wed of next week) and hopefully it will do a good job fending them off. :crosses fingers:

19

Wow – I didn’t see this thread before because it started when I was on vacation. I can’t describe the pain any better than ToeJam did – that was profoundly expressive, especially

That is so close to my situation it is creepy. And my triggers are the same as many – barometric, odors, stress (sometimes it is the end of stress: If I have to be focused on something for a long period, it’s when I’m done that I get the migraine). Any kind of fragrance, cigarette smoke, wood smoke, lavender, eucalyptus, and wine. Foods, not so much, but I don’t eat a lot of the foods reputed to cause migraines anyway.

I take Topamax as a preventative, and Maxalt and Imitrex injections. My boss at my previous job was very understanding; my current boss is not so, and worse, she is a conspiracy-theorist about Big Pharma. When I first started work, I told her about my migraines because I knew there would be times I’d have to take medication, and it might slow me down. She responded by telling me that my medicines were poison and doing her own research on the internet (she does not have migraines, nor do any members of her family, and she is not a health care provider) and printing me out everything she found, which was either 1. Not relevant to my condition; 2. Common knowledge to anyone who’d ever had a migraine; 3. Obsolete; or 4. Out-and-out lies.

Whenever I had a migraine, I’d have to go somewhere and hide to take my medicine, and do my best to fake normal lest she start brewing up some of her “herbal tea,” which she probably made from some weeds in her backyard, and the smell of which sent me to the bathroom to vomit.

Now I have my own office so I can suffer in peace with the lights out. I haven’t missed a day of work, to the glory of pharmaceuticals. One time I had to go to the neurologist’s office for a shot of Tramadol (there’s a spot in Valhalla for the gal or guy who invented that stuff!) and then came straight back to work. And I drink Diet Dr Pepper for a moderate, regular dose of caffeine, neither too much or too little, despite the tracts I find on my desk from time to time warning me about the evils of diet soda.

I have a dimple in my left eyebrow that the pain seems to center around like a . . . well, like an ice pick, as noted above. I asked my previous neurologist if this could be related and he said no. But it just seems a strange coincidence. That little depression in my skin is the epicenter of all the pain. And I cannot tolerate the slightest bump of my head without it leading to something. My husband regularly bangs his head on cabinet doors, the backs of chairs, whatever, and it just makes me cringe because that would be the end of me for the day. Anyone else very sensitive to bumps like that?

20

Not bumps, but jostling can cause a headache to start for me–like going over a long, bumpy road in a car. Weird stuff.

One kind of funny thing is a common sign that a headache’s on the way (for me) is that food will taste kind of moldy. Even things that don’t get moldy will have a little bit of that flavor. It’s strange. It’s not every food, but just one or two, and then the flavor goes away after the headache passes.