Researching an odd symptom...

One of the beauties of a site like this is that it can be very validating. Not only can we get information but it just helps to know that there are others that feel like we do.

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My migraine story is not as remarkable as that of many people here. For a very long time I went undiagnosed because I seldom had a severe headache. (And we all know that migraines are bad headaches, right?!)

I actually thought that I had some kind of recurring virus. Several days out of almost every week I would feel like I had been hit by a truck. I would be very tired, mentally foggy and very nauseated. This might hit me a couple of hours after waking up with a stiff neck. At that time, my doctor tried what he could, eventually settling on giving me an antinausea drug to help me through when I really couldn't afford to be absent.

Gradually, as I got into the perimenopausal years, my symptom pattern changed, though probably for a mixture of reasons. I developed severe premenstrual dysphoric disorder (PMDD). Despite being a generally quiet and spiritual person, for 1-2 weeks out of each month, I felt such rage that I truly felt like self-injuring, killing myself or killing others. I would scream swear words at the top of my lungs when no one was around. This went on for 10+ years.

During that time, I occasionally had what I assumed were migraines, horrible, painful unilateral headaches. However, these were so infrequent that I didn't seek treatment for them. Instead, I sought help for the PMDD and the viral-like illness that often hit right after my period.

I also developed nocturnal myoclonus, the cause of which was never identified. (I still take medication for it.) My sleep was frequently interrupted with one of my limbs or my whole body shaking, jumping, jerking. I sometimes had vivid hallucinations around sleep. I was also found to have an abnormal EEG, but my neurologists were never convinced that any of my odd experiences were seizures.

This was fine with me. I didn't want seizures. Nonetheless, I tried a multitude of medications for the PMDD, including anticonvulsants, just in case they might help. I got minimal relief - but, thank God, I eventually "outgrew" the PMDD part of my illness (i.e. I went through menopause) .

However, the recurrent viral-like symptoms continued. My doctor sent me for many tests and admitted that she didn't know how to help me - pretty much everything was normal except my EEG. I finally had such a bad migraine that the diagnosis became more obvious. For three days, I had the usual symptoms but could not bend over without one side of my head throbbing unbearably.

All of this is background and, perhaps, not of great importance. However, I share it in case there is someone else out there with similar symptoms who might benefit from learning of my experience.

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There is, however, one particular symptom I am really interested in researching with this group.

Sometimes I get "migraines" where the primary (or only) pain is somewhere other than my head. It often begins with a recurring, excruciating, stabbing pain in one part of my body. It can be in my arm, my leg, my side, my neck, etc. but only one location per episode. Sometimes it goes on intermittently for hours, sometimes a couple of days.

It is often hard not to audibly gasp because the pain is so sudden and severe. I would describe it as "nerve pain" because the skin in that area may hurt and be acutely sensitive to cold. It eventually lets up but, somewhere in the process, my regular migraine symptoms start up: nausea, fatigue, brain fog.

Every doctor I've seen but one has had no idea what to make of these stabbing pain attacks. One neurologist said it was migraine and gave me an article on arm and leg pain that some migraine sufferers experience in the prodromal phase. Interesting. Validating...sort of. Not sure if it's the same thing.

And I've never heard anyone say, "I have a migraine in my arm." Not all of my migraines are like this. But I'm curious - do any of you experience anything like these stabbing pain attacks?

Please comment here if you do. Perhaps, if there are enough of us, it will someday lead to a greater understanding of our disease.

Thanks. I wish you all many blessings and much healing.