pain causing seizures

[baci2]

Please be patient while I explain my circumstances. I was born premature and they stuck me in an incubator and put a needle in my head.  I still have the scar but it did not show up on the MRI.  When I was a year old, at a department store, I hurt my finger and had a grand mal seizure.  My mother took me to the pediatrician who yelled at her for letting me hurt myself.  After that, every time I would have an injury, I would have a grand mal seizure.  Examples, when I got bit by a dog, when I fell down a flight of stairs, when I get a really bad charlie horse in my leg.  They thought that I would grow out of it but I'm 31 and I've had 52 grand mal seizures.  In July, I had one when my back popped out in my family doctor's office (I had gone because my back had already started to hurt, then I sneezed and I heard it pop, and then it became extremely painful.)  When this happened, I had a GM right in front of my doctor.  He asked me to see a neurologist as well as a cardiologist because I have a strange heart beat as well.  The cardiologist did an EKG, a stress test and an echocardiogram.  While on the treadmill, my pulse was up to 200 after 6 minutes and they made me get off.  A week later they called and said that everything looked fine.  I decided not to see a neurologist at the time because having seizures when I hurt myself was something that I've always done and they just said that it was my body's response to pain.  Then, in November, I had a seizure out of the blue with no injury to provoke it.  My husband witnessed it.  I remembered feeling extremely dizzy (like always), and it kind of seems like the lights get a bit brighter. I layed on the floor and he said that my eyes rolled back in my head.  Then I started convulsing and a few minutes later when I woke up my pupils were fully dilated and I had urinated.  I was not awake for any of this, for this is just my husband telling me what happened.  Nor was I awake at the doctor's office, for he described the same exact thing but of course, I was unaware of what happened after the dizziness.  Because I had never had one without pain causing it, I went to the ER.  They did a cat scan which turned out normal and referred me to a neurologist who in turn referred me to an epileptologist.  The epileptologist did an EEG and an MRI.  All came back normal except he said that there is something rhythmically wrong with my heart and that I need to have more tests done.  My heart rate kept bouncing between 60 and 110 as I was laying there for about 30 minutes during the EEG.  But my epileptologist said that pain is not a trigger for seizures and that he does not want to set me up for seizure monitoring since I only have seizures 3-4 times a year on average.  He does not want to completely diagnose me with epilepsy because nothing showed up on the tests.  He did up my dose of Lamictal and told me that I cannot drive for a year or take baths alone.  He wants me to go back to the cardiologist for more tests.  Am I the only one out there with pain causing seizures?  Thank you for any patience and expertise in this area.  I feel as if I'm the strangest human being on earth. It seems as if everyone else just yells or says "ouch" when they hurt themselves.  What I wouldn't give for an "ouch" instead of a seizure.  Thanks again.

[machou]

Hi my name is Martine. Are you still having the seizures? I am having a similar situation as you? Any progress, if so please explain. Thank you.

[k4182]

I have been dealing with the same issues for the last three years. I've had 4 seizures now. I have taken time off of work to see the best of the best at the mayo clinic in Minnesota and still no one agrees. I 've been diagnosed with tension headaches, seizures, hyrniated discs, and fybromyelgia. but they have nothing to do with the seizures. ugh.

[smtlove]

Hey guys, I am with you all.  I started having seizures when I was about 14, just after hitting my arm on the washing machine.  I then did not have another one after having 3 children and 2 miscarriages until I broke a small bone in my foot which at first my husband and daughter laughed at me because I would pass out three times before they could get me into the house, only about 25 feet.  Then I had another one right in front of my neurosurgeon while he was checking my back at my two week check up after back surgery.  My daughter looked it up and it is called anoxic seizures, which are triggered by anything that reduces the flow of blood to the brain.  The report seem to say that it might only be children but from the sounds of all of us it isn't.  I too get light headed, I feel as though the room gets grey looking and I then don't remember the rest.  Well I hope this helps all of you out.  I have not been diagnosed with seizures nor do I take any special meds for it either.  I really think this is what I have.  Please let me know if you agree.

[dawn9771]

My exhaustion and stress causes my seizures too. You are not alone and it's quite frustrating dealing with doctors who think they know our bodies better than we do. I have grand mal seizures when I am tired, during my sleep, and upon awakening. I have been diagnosed with epilepsy and these types of seizures occured several years after my head injury that put me on disability. I believe it is from my injury but no one wants to believe me.

[TesseractToo]

Wow. I just had a pain related seizure 2 days ago. My good pain doctor retired and now I'm stuck with a moron who doesn't believe stuff. He must be omniscient since he knows everything. They have taken away my rescue meds for breakthrough pain. I'm in big trouble until I can find a pain management dr that doesn't suck. Fortunately the neurologist who I saw with this took the report on the seizures in stride and believed me.

[susalcapr]

I just read your post with great interest.  I am 50 and have been having what I thought were pain-triggered seizures since I was about 10, when I was diagnosed as epileptic after a grand mal seizure  that was triggered by a classmate slapping me on the back.  I had several seizures from 10-14, all triggered by some kind of sharp pain, e.g., biting into very hot food, swallowing wrong, hitting my funny bone.  Was put on phenobarbital and then dilatin.  In late teens, was seizure free and weened off of the drugs.  Since then I have had pain-triggered seizures very occasionally from a blood draw, whack on the head, etc..., with no repeat triggers until today (i.e., have had many blood draws since one that caused seizure. none causing a seizure).  

What I have learned over the years is that I can feel an episode coming and stave it off by putting my head between my legs and sitting/squatting down for a while.  However, I just whacked my funny bone.  I felt the pain intensifying (it spirals and grows), made my way to the grass, and put my head down.  I woke a few minutes later with my head down and realized I had just had an episode, but am nearly certain there was no rigor, or muscle tensing/spasms, which led me to the computer to see what it was...

Reading your post makes me wonder if I have actually been having vasovagal syncope and NOT epilepsy all these years.  I am loathe to talk to my doctor about this as what I have has always been labeled idiopathic.  My grand mal seizures in the past did involve spasms, per eye witnesses, but I now wonder about that...also, I have a very high pain threshold in general, two children via natural childbirth and not registered pain at levels most people do.  HOWEVER, certain pain I find intolerable and those are my triggers: funny bone sharp pain, quick blow to the head or back (e.g., slap on the back), swallowing wrong.  I have also just started taking Lisinopril 2 days ago for slightly elevated blood pressure and will be carefuly to see if this is affecting me negatively.