Journal of Migraine Sufferers


I'm just wondering if anyone gets cold sores in conjunction with migraines.ANYtime I get a cold sore, I get a migraine. It does not work the other way around. The frustration is in knowing that once I note a cold sore I can count on a migraine within 5 days, but I can't do anything to stop it. I stay away from triggers but that makes no difference, as far as I can tell. Also, re: imitrex, has anytime ever experienced nausea? I've tried imitrex tabs twice throat feels constricted, I feel drowsy, and my nausea seems worse than usual.

You can email me at Thanks,


Hi thanks for your site, it was very interesting and informative. I have suffered from migraines since about age 9. I'm 19 now. Sometimes they'll be real bad and I'll get one every day then for awhile they'll go away and won't be as frequent. My migraines seem to come as a result of stress. I'm a 19 yr old college sophomore. This past summer after my freshman year, I was back home and I worked two jobs, one as a waitress 4 nights a week, I also babysat four days a week, taught dance classes to younger kids on Sat. afternoons, took dance lessons on the two nights I didn't work, and attended nine hours of classes every morning at a local community college. I also had to try and find time to go out with my friends. As a result over the summer I had severe incapacitating migraines every day for about six weeks. I didn't want to lose my job, so I had to work through them and be polite to everyone when i just wanted to die.

Now its almost the end of the sememster here at school and I'm starting to get an increase in my migraines again, yet again I can't really do anything cause I'm so active. I'm in hall government, yearbook, dance theatre, choir, tumbling, and I take dance classes plus we're preparing to do the nutrcracker and I have my classes.

I'm taking beta blockers right now but they really don't help so we're looking for a diff approach, my migraines don't have an aura they just come on all of a sudden, and start with a dull ache that spreads. I get dizzy, tired, weak, extremely irritible and moody, and have an extreme sensibility to light and noise (this is not a good thing when living in a dorm with 30 other girls who insit on blasting their stereos and screaming down the hall to each other). If not for the headaches I would be doing the same thing though so I can't really fault them any. Its hard to find medicine because I am allergic to asprin and asprin products, and I've suffered from insominia off and on since age twelve. This has also been acting up recently.

Well any advice you or anyone could give would be helpful, also how do you handle it when people say well its just in yur head, or it must not be that bad if your going to class or whatever, I mean if I stayed in bed all day cause of the headaches as often as I get them I'd do nothing else but sleep, so since I do force myself to get up and go to class people think they're not that serious or that I'm exaggerating the symptons. If anyone does write me I will reply to you. Good luck everyone :)

So, I got away without one this afternoon. Makes me feel among the truly blessed. For the past couple of weeks, they've been attacking about two o'clock each afternoon. No, that's not correct. Each weekday afternoon. Weekends are a different story. So, every day at work, there's that brief tell-tale signal that there's a storm a'brewin' and, sure enough, a couple of minutes later, I have to leave my office and sneak into the dark, quiet sanctuary of the men's shower room. And there I hide for the next half hour or forty five minutes.

I guess that's what I really dislike about being a cluster sufferer -- oh, the pain, the screaming, agonizing, soul-wrenching pain isn't something I enjoy -- but what I've really come to detest is the bloody inconvenience! It tears me away from my desk and leaves me positively goofy when I do get back; it reaches right down into my sleep and wrenches me awake; it dances merrily all over the grave of what normal people call a 'social life'. Why, just this morning, it had the gall to attack just when I was shaving, getting ready for work. Being on a tight morning schedule meant skipping breakfast just so I could sit and cater to the whims of THE CLUSTER. I'm 49. According to some of the information I've read in this news site, I've only got another six years to go as clusters tend to peter off in males by age 55 or so. Zowie. Only six more years.

My first experience was at age 16 -- riding home from school one afternoon on the bus I suddenly felt as though I was about to vomit on the person beside me. My head was split right down the centre. I was perspiring coldly. My nose was running and my eyes were stinging. I had no idea what was happening! I got off the bus at a mall and, with much care and deliberation, made my way to a coffee counter and drank my first cup of black coffee. It was all I could think to do. I have no idea if the coffee helped or whether the attack merely ran its course but just as suddenly as I had become thoroughly convinced that I was about to expire, the attack stopped. My mother later suggested I'd had a migraine.

And so it had begun. From 16 to about 27 or so, I'd occasionally get these excruciating 'migraines'. They were devastating BUT they were extremely random and somewhat rare -- maybe three or four times a year. Then I became a Regular Member of the Cluster Club. And I've been paying my dues almost continually ever since.

I like to think of my own, personal brand of cluster headaches as being cyclical/seasonal. They have created their own pattern of occurrence that's darned near good enough to create a calendar around. Three months ON, two months OFF. Sometimes it doesn't work that way -- sometimes one cycle seems to peter out when WHAM! the next one starts. And we're off and running for another three months or so. From what I've read in these messages, my experiences are, for the most part, typical. I'll get into a more detailed description of the events themselves in a moment (now THERE'S something to look forward to!).

I'm not a joiner. I've never partaken of what support groups have to offer. I'm not really sure why. Perhaps I consider it an unnecessary perpetuation of the misery to sit and talk about it in a group. When I got into the Internet though, I typed in 'Migraine' in a search engine one day and it led me to this news group and the migraine information pages. They, in turn, led me to the 'Cluster' information. And, perusing through what other people have written and the questions they've asked gave me a strange sense of solace -- not being alone with clusters.

Don't get me wrong -- I'm still not a joiner and I still disagree that group whining serves any purpose other than serving irrelevant, self-serving sympathy. But I must admit it helped to read those articles and questions. And perhaps my experience with clusters can help someone else if, in no other sense, than that of a fellow human who goes through the same thing you do.

Probably like you, I made many visits to a number of doctors over the years. I probably created my own problems by going in to them complaining of 'migraines'. Well, there are certain remedies for migraines that sometimes work if you take the medications and the proper times. "Take this pill the second you feel the aura coming on." Aura? Hmmm. Do I experience an 'aura'? I guess I must if the doctor's giving me a pill to take when I feel it coming on.

Well, of course, I've never experienced an 'aura'. When a cluster headache is coming on it's as if I am a car that's been driven in 'Drive' but suddenly thrust into 'Reverse'. There's a gut-wrenching, silent shrieking of mental gears as the 'Brain Storm' approaches. Or, there's a metallic sensation -- difficult to describe -- but it's not an 'aura'.

It wasn't until after many years, and a number of neurological tests and various medication prescriptions, that a doctor suggested that they'd been trying to treat the wrong thing -- it wasn't migraines at all, but, rather, 'cluster' headaches. And, she was very sorry, but there wasn't any medication or procedure that she knew of to alleviate the problem. And that was that. Lithium, pregnisone and so on work spasmodically at best. Oxygen and rapid breathing may work once or twice but you can't count on them. It's been suggested that sex is a good cure. The LAST thing I want during an attack is to have someone groping about trying to initiate a sexual encounter! It's definitely a 'DON'T TOUCH ME!' period of time. OK, let's get down to the dirty, rotten bits and then I'll discuss what I do about them.

I experience two distinctly different types of attack. When a 'cycle' begins, the first attack leaps out of nowhere and beats me senseless. With virtually no warning at all, I'm thrust into the most excruciating, violent pain that nature ever devised. These attacks are real hummers! I can't stand light. I can't stand noise. I can't stand someone touching me (in fact I can't stand being in the same room with someone else -- probably light and noise have something to do with that). I can't stand to think and I seem incapable of making decisions.

This part is a bit indelicate, but we've come this far! Physically, my stomach turns nauseous although rarely do I actually vomit -- it happens but only rarely. My bowels are equally thrown into upheaval so that one isn't sure just which end of himself to aim at the toilet! I become drenched in sweat and I swear my body temperature soars to something near the point of spontaneous combustion. I can't stand a stitch of clothing touching my skin. Try as I may to remain calm and in control, I find myself writhing in pain, unable to stay still. But every shift in position causes more extreme pain. There is definitely the feeling of a white-hot sword blade being shoved through my skull. My neck becomes stiff and sore and it feels as though I have a violent toothache in one of my back molars. My breathing is erratic and gaspy. My eyes water continually and my nose runs. As the attack wears down, I suddenly get very cold (probably from the perspiration). And, when it's all over and I've regained what I like to consider my composure, I feel mentally and physically exhausted. I remain white as a sheet for ten minutes to a half-hour afterward.

Needless to say, I dislike this type of attack the most. But in my case, there are usually only a half-dozen or so of these before I slip into the next stage of the 'cycle' --the stage that lasts for the next couple of months. The attacks diminish from the violent to the merely intolerable. In these ones, I don't experience the heavy sweating but I do feel chilly as the attack dissipates. The watery eyes and running nose are still there as is the reluctance to expose myself to bright light or loud sounds. The Sword In The Skull syndrome is still there as is the stiff neck and occasionally the 'toothache'. I cannot function during these attacks. I can't make decisions, I can't talk with anyone and I can't move about without causing more violent agony.

These attacks are somewhat predictable although during the course of the weeks they exist they tend to shift about a bit. Generally, during a typical weekday, I'll get an attack about two in the afternoon. I'll get another between nine and eleven at night. I'll get another about an hour and a half after going to sleep. During the night, I may experience several of them; usually about an hour and a half apart. Rarely, as was the case this morning, will I experience one before two o'clock in the afternoon. Weekends are different in that I'll usually get one almost immediately after getting out of bed. Hell of a way to start your day. I'll usually get another between four and six and again between nine and eleven. It's the same pattern as weekdays except they throw in a couple of extra ones!

What do I do about them? For years I felt totally out of control when they hit. I had no 'game plan' and I guess I was clinging to the hope that some sort of medication would do the trick. But after going through the gamut of what's available and what's recommended, it became clear to me that there's nothing that can help. Fighting the condition only makes it worse. Living in constant fear of the 'next' attack only compounds the misery. So, my method of handling clusters is simply to ACCEPT them as part of myself.

There are two things that I do to help myself through them. One way, believe it or not, is to READ A BOOK during the attack. I sit upright on a kitchen chair and in a dim light, I prop my book on a folded Tea-Towel at an angle that doesn't cause a glare, and I concentrate on reading the words. I have plenty of tissues handy as my eyes water and nose runs. It's just as agonizing but you're not concentrating on the condition and that seems to help.

The other way is to sit upright in the kitchen chair, hands folded on the table and just exist through it. When you know that it'll be over typically within the hour, you know there is and ending coming soon. During this period, I apply slight pressure to the two main points and use slight finger pressure on the more elusive, roving pain points. As I wear glasses, I keep them on during these attacks and use folded facial tissue to stuff in between the glasses frame and my skull -- one at the temple and one over the eye that's affected. This slight bit of pressure is somehow comforting. The slight finger pressure to spots on the skull, nape of the neck and forehead only helps second-by-second as the pain seems to scamper about willy-nilly. It's really hard to pin down.

I guess the most important suggestion I can make to fellow cluster sufferer would be to accept the condition as part of your life, give up the fear caused by the memory of the last attack and accept the fact that there's another one coming (regardless what you do) and simply live through it. We know it's not life-threatening although I'm sure you'd agree there are times when we wish it was! We know that, violent as they may be, they always come to an end (whereas some migraine sufferers have to live through days of agony). Be prepared for them -- know which room of the house you're going to escape to, have the tissues ready -- preplan for the attack and have everything you're going to need ready for yourself. Work out a 'signal' you can use for friend or family so you can escape their presence without having to explain anything. And, keep looking forward to being 55!!

I am a 59 year old female who suffered in my 30's and 40's with migraine. I am now "renewing" my acquaintance with this painful affliction because my 36 year old daughter is now suffering from them.

I wish to share my experience with biofeedback. Although it has not helped my daughter, perhaps it can help someone else. I began lying in my darkened bedroom with the migraine and trying to imagine anything which would give me relief for even a few seconds. (Sound familiar?) At first, nothing worked. Finally, I pictured a small pump in my head pushing the blood forcefully downward. To my surprise, the pain went away for a few seconds.

During my most painful episodes, I would often try this for just a few seconds of relief. To my surprise, I became adept at making the periods last longer. After several months, I could successfully "cure" the headache if I caught it early and "closeted" myself in the bedroom where it was dark and I could concentrate. As the months went by, I was gradually able to do this imaging technique and receive relief without lying down. The headaches gradually disappeared. I realize the likelihood of this working for a number of people is small. But am hoping it might work for even one!

I also realize that it is possible I went through menopause and I understand this "cures" migraine in some people. However, it is worth a try to see if one might achieve a few seconds of relief with some type of imaging such as this.

My daughter has been diagnosed with a brain tumor or cyst (2 different neurologists) and told by both that this is not causing her headaches. The tumor/cyst is in the atrium of the left ventricle, but apparently no pressure in the cerebro spinal fluid at this point, so advice is to "wait and see" with future MRI's to check for any changes. Anyone else out there with similar history? The tumor/cyst is about 2.5 cm x 1.25 cm.

I am so thankful that I know I'm not the only one (outside my family) with these awful migraines. I truly am indebted to you for this tyoe of suport, we need all we can get. It's hard to explain to someone who doesn't have them, what a migraine is like and why they happen so often.

I started getting them when I was 11 and they have progressively gotten worse over the years. I'm now 25 and I've been in the ER so many times, they know my name and why I'm there. I figured with all the money I was forking out to go to the ER, I might as well try a neurologist. I had an MRI and other tests to rule out tumors or other such ailments.

I was glad when the doctor told me that I could control the pain with daily pills (verapamil). The problem was that 1 month later I found out that I was pregnant. Well, I was not about to jepordize my child's health, so I stopped the pils. They say that your migraines get worse when you are pregnant, but I was lucky and only got one my whole pregnancy.

Now my child is 6 months old and the pain has become more frequent and painful. The esgic plus and fioricet with codine have no effect on my any longer. I'm at my wits end and am open to trying mew drugs. I've found that my pain has NO triggers whatsoever. So I can't find any preventative measures.

Please advise of anything that may help. Thanks, again! ---Kim Curtis - Louisiana

Dear Ronda and evetyone else:

I'm hoping I'll find some answers here. I've been told that I suffer from abdominal migraines. I have all of the symptoms of migraine, without the headache. I know they are coming at least an hour before hand, I have extreme nausea, shaking and shivering, cold extremeties, and I need absolute quiet and dark . Any noise is brings a new wave of nausea. Relief only comes with sleep. I take gravol (dramamine) and Ativan, which allows me to get to sleep after a couple of hours.

I've been to doctors who have no answers. I've been told by a psychiatrist that these are not anxiety attacks, although a migraine doctor told me they must be. The psychiatrist says I don't have the right symptoms. Also, my sister suffers from classic migraines with headaches and finds relief with medication.

Has anyone else heard of this? Are there any drugs or treatments that work better? I can be reached at:

Thank you very much.


P.S. My doctor would like me to try a low dose of desipramine (Norpramine), but I would like to get pregnant (I have a five year old boy). Does anyone have any information on pregnancy and nursing while on desipramine? Thanks.