Went to bed Friday night and wife came up 15 minutes later to find me foaming at the mouth and having a seizure. Spent the next few hours in the hospital. I’ve been under alot of stress with work (restaurant biz, busy week with Valentines) and I have been on a taper for a big race this weekend (which I didn’t do) and haven’t gotten alot of sleep as my 2 1/2 year old decides to get in bed with us alot this week. I feel fine now other than sore muscles, but now need to get an EEG and MRI done. I had a brain biopsy 2 1/2 years ago that came up negative and was merely a small inflammation in the brain that had to do with dehydration. My CT scan at hopsital came up negative for anything which was comforting. I’m the fittest I’ve been in years and have had an incredible off season. I truly hope this doesn’t ruin it.
Can’t help with advice or similar story, but best of luck. Stay healthy!
Scary, I hope everything turns out ok.
The night before Alcatraz a number of years ago I had a mysterious seizure, briefly lost conciousness and found myself- of all places- with my head wedged *under *the toilet between the wall and the toilet in the hotel we were staing in. How I got there I could not tell you- it is simply a mystery.
I was rather unnerved by the whole experience but, other than feeling dizzy and having a bump on my head, I was apparently OK. I raced the next day and it was not good. I was pretty out of shape anyway but the episode the night before made racing very unpleasent (understatment). I did somehow finish though.
Someone on ST here snapped a photo of me in the race and I looked horrible. Overweight, bloated, miserable. When I saw the photo here on the forum I knew there was something wrong with me as the fellow in the photo simply didn’t look “normal” for me. Something funny was going on.
Four months ago I had a stroke and heart surgery to repair a birth defect called a PFO. Full story here:
http://www.bikesportmichigan.com/editorials/0000134.shtml
Tough to tell if the events were related, but the moral to your story and mine is to not ignore these symptoms- they could be serious. You knew that and it sounds like you got some testing. If you continue to have problems, obviously, keep going down the formal medical road to diagnose the issue. I was lucky. My problems were very minor in the grand scheme of thngs and I would say I’ve made a full recovery, largely thanks to excellent medical care at Oakwood Hospital and fine doctors and supportive friends.
When I see these posts here on Slowtwitch that read like, “I had a ______, should I go to the doctor?” The answer is always, “Yes!”. Serious medical symptoms can;t be accurately diagnosed on an internet forum, as you already know.
I have - few times. If you have any questions at all give a call.
I went through the whole thing. Seizures, med (dilantin, Neurotin, Keppra and more).
Dude, bit or a personal question but, did they ever track down the source?
Fitness has nothing to do with this.
Without knowing more I assume you had a complex partial seizure. You need an MRI and a good neurologist. I can recommend some good neurosurgeons if you need that–I think they are more exacting than lazy neurologists but they can be too hands on, if you know what I mean. Your symptoms/scenario is common. But the causes could be wide-ranging from tumors (bad case) to partially occluded blood vessels or (commonly) scar tissue/fibrous tissue buildup. In the most common form, a fibrous lesion forms in part of the brain. This lesion “causes” aberrant neural impulses that diffuse across your brain and result in seizures, typically while you are sleeping. Drugs are used to depress these impulses but in doing so they depress the whole brain and result in some minor side-effects.
Best case is this is a freak incident and will never happen again. This may have happened before and no one noticed. You wake up and feel like shit, bite your tongue in your sleep, grind the hell out of your teeth, etc. If nothing else, you will probably end up on Keppra (750mg) which has minimal side-effects: drowsiness and is linked to depression.
Worst case is something of the tumor variety or some other funky rare problem. MRI should tell you what is going on. There are some special MRIs your physician can run to elucidate a cause. Lots of neurologists don’t bother to look hard at what causes these problems because they can just give you a scrip for Keppra and go on to their next patient. So you might have to look for a good neurologist if you want to really take a hands-on approach to fixing your problem, depending on how things go. If you are in LA, go to Cedar.
You do realize that if you cause an accident in the next 6 months that your insurance carrier might not pay a dime for you? Not sure about how this affects health insurance if you are injured while riding a bike? Might want to look into that. States also have laws that might prevent you from driving for up to 8 months (depends on the state). You need to look into this as well and you need to find out if someone has reported you to the state (not that it makes much difference on the front end but you would need to get reinstated on the back end.) Usually doctors don’t report anything to the state unless they have to.
This should be sufficient info to get you started on diagnosis and fixing this problem. Good luck!
“I had a brain biopsy 2 1/2 years ago that came up negative and was merely a small inflammation in the brain that had to do with dehydration.”
================================
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For the time being based on available information, you had a spell of some kind out of sleep; the other
information provided is certainly consistent with, but not diagnostic of, a seizure. if it was a seizure,
we cannot tell if there was onset ‘everywhere at once’ (generalized) or ‘from some particular focus or lesion’
(used to be called partial, now called “localization related” seizure. -
a seizure is aberrant brain electrical activity and may or may not give rise to observable manifestations. the
aberrant electrical activity may be seen OR NOT on surface eeg (ie, scalp). -
epilepsy is recurrent, ‘unprovoked’ seizures; risk factors include family history; febrile seizures when you
were a babby (<1), head traume (the biopsy counts), prior cns infection/surgery (biopsy counts). there’s
a huge spectrum of epilepsy: examples: a yong child with hundreds of seizures per day that will never be well
controlled, versus an elderly person who has seizures after a stroke at about 3-4/month, then gets good control
with one aed. -
a seizure may occur : after fainting (syncope) and does not constitute epilepsy; same is true of
alcohol/benzodiazepine(eg, valium, ativan) withdrawal OR acute intoxication with other agents (usu. speed-like), OR
sleep deprivation and experienced (physiologic/emotional) stress. these and certain other situations do not
call primarily for anti-epilepsy drugs (aed), but treatment, if any, of the underlying condition(s). aed may be
used briefly in some cases; AED are also used for nonepilepsy purposes (pain, mood, other sx). -
having a brane biopsy is a big deal. you must have had some unusual, unexplained symptoms
at that time–unclear why this was done or if whatever was going on makes seizure/epilepsy more/less likely.
there may be transient MRI changes following seizure, or scarring from trauma, small strokes, other things…
you may have had something like: headache => mri => abnormal signal => what could it be? (??=> biopsy??).
or did you have more systemic problems and the brain issue was part of a larger picture of illness? the result
was nonspecific inflammation, apparently: helpful to know it’s not neoplasm.
-
a cns hormone–prolactin–IF elevated, and in the absence of excessive chest wall stimulation and
pituitary tumor, is suggestive of seizure. If not elevated, doesn’t mean you did/didn’t have a seizure.
this was in fashion for all seizures 5-10 years ago and can still be valuable; it should be checked in the
ER if this happens again. -
25-30% of people who indeed have epilepsy have normal awake/sleep eeg (eeg is a brief surface (ie,
scalp) snapshot of 20 minutes of brain activity). -
normal ct head (presumably without contrast) and (?) normal exam reassuring but would followup with the
MRI with and without contrast and see a thorough, fellowship-trained epileptologist (sub-sub specialty, neurology). -
taking everything you’ve said into account, this might have been a first-ever seizure (though if it is seziure,
you may have had other, unwitnessed events) in the setting of increased physiologic stress (kids, work, training)
that calls for less stress rather than aed. the only problem with this is the brain biopsy suggesting some other,
concerning, unknown problem or symptom complex that warranted an invasive procedure with attendant risks.
also one suspects that common lab values and their interepretation re: dehydration may not always reflect the
full physiologic picture (eg, sodium, BUN, creatinine all look ok; potassium’s fine, HR 80, bp good, no tenting of the
skin: must not be dehydrated), though they’re usually pretty good. -
additional workup that may be suggested by your doctor(s) depending on age, helath, risks,
and pmh: echocardiogram (is the heart’s pump function good? are the valves working?), MRA (looks at
blood vessels) along with the MRI (looks at ‘meat’ of the organ). these are much less likely to be helpful though.
if you have had faints or other spell types though , these should be discussed along with 24 hour holter (EKG, heart) monitor
and, if the spells recur or become more frequent, either 24 hour EEG (brain wave) monitor or epilepsy monitoring
unit (eeg hooked up continually for days to check what the spells look like, if any surface eeg manifestations, and are
they likely seizures).
WOW- thanks so much for the replies. The biopsy was performed 2 1/2 years ago because I had some numbness on the right side of my body, and the MRI showed a white spot the size of your fingernail. After thinking MS, brain tumor, and brain cancer, they all ended up negative (per the biopsy) and I’m now in the training file at Shands Hospital at Univ. of Florida. At the time of that numbness, I was more stressed out than ever (job, first child on the way, etc). This week has been much of the same sans the first child. I have been a train wreck, but I’ve been training better than ever. It seems that I’ve been complaining all week about how hungry I’ve been (and I own a restaurant, go figure). I took Friday off from training and was very shaky after drinking my coffee. I went to work and had a pretty insane day. I came home and ate dinner (I hadn’t eaten anything in 8 hours except water) and went to bed. The seizure apparently happened very shortly thereafter. One final note, my sister has had epilepsy since age 15. She is now 35 and I am 38. The hopsital prescribed Keppra as most of you suggested, but my personal neurologist told me not to take it until we performed the necessary tests.
Tom, truly amazing story. Way to go and God Bless. I suppose if you can survive all that, I can get thru a little seizure. Thanks for writing that piece.
never had any as a child and then have had a few 1 genaralized tonic clonic seizure (scared the heck out of my wife and my father inlaw, thankfuly my mother in law is a nurse so she was calm) to a few complex partial seizures, 4 total incidents over the last 10 years. They have been spread out by about 2-3 years per event and for me the only common trigger has been having a virus with a slight fever and then feeling like I am about to throw up (not sure if the feeling like I am going to throw up is more an aura of the seizure or part of the cause). I have had a full neuro and CV work up and came up clean. The docs think it may just be a strong vagal response when I am sick, since the pattern has been very predictable, if I have a virus with a fever i just have my wife bring a bucket near the bed in case I feel sick and sit tight so no meds and no real impact on life. You need to go get a full work up to make sure there is nothing causing it, if there is not, it may just be one of lifes unexplained mysteries (which is what you should hope for) and really although they can be scary looking can be pretty minimal on impact on life unless they are very frequent/unpredictable, good luck and feel free to pm me if you want to connect live.
I have had seizures in the past (none for 10 yrs now) but I’m on medication. I have never had a medical explanation that satisfied me as to what the cause was but like you it happened at a time of high levels of stress. If you would like to contact me I’d be more than happy to share my story with you.
One thing to consider is if they slap the label of “Epilepsy” on you there are a number of issues that may arise. I lost my drivers license for a two year period and if I want to go off the meds I’m looking at having to give it up for a minimum of a year (maybe longer if a seizure happened during that period). Ultimately it’s up to your doctors but for me it was an incredibly frustrating process to have to go through.
On the bright side it has never interfered with my training or participating in triathlons (up to and including ironman distances) and marathons.
Best of luck
…The biopsy was performed 2 1/2 years ago because I had some numbness on the right side of my body, and the MRI showed a white spot the size of your fingernail. After thinking MS, brain tumor, and brain cancer, they all ended up negative (per the biopsy) and I’m now in the training file at Shands Hospital at Univ. of Florida. At the time of that numbness, I was more stressed out than ever (job, first child on the way, etc). This week has been much of the same…I’ve been complaining all week about how hungry I’ve been (and I own a restaurant, go figure). I took Friday off from training and was very shaky after drinking my coffee. I went to work and had a pretty insane day. I came home and ate dinner (I hadn’t eaten anything in 8 hours except water) and went to bed. The seizure apparently happened very shortly thereafter. One final note, my sister has had epilepsy since age 15. She is now 35 and I am 38. The hopsital prescribed Keppra as most of you suggested, but my personal neurologist told me not to take it until we performed the necessary tests.
this is helpful; adding to the previous data, we might summarize as follows, with ? and (?) indicating other uknowns:
2.5 years ago you had sensory symptoms on the right side in unknown distribution (all or some of face, trunk, limbs) and imaging showed a (?single and presumably left brain) finding with non-specfiic inflammation on biopsy (?after a lumbar puncture was non-diagnostic and ?other MS workup involving flashes of light and clicking sounds was unremarkable). the symptoms resolved after uknown amount of time (?completely and never recurred) after ?no treatment. this occurred under a time of stress (?that stood out among all other stressful periods). ?no followup MRI was done. ?there were no other health issues or symptoms until quite recently.
recently, again in a period of (?unusually high) stress, possible overtraining, and sub-optimal nutrition/hydration, (but NO use of seizure-o-genic herbs/meds/recreational/over
the counter drugs, and nothing to suggest withdrawl from cns despressants (alcohol, valium, others)), you had a spell out of sleep concerning for seizure, but ?without observed focal findings to suggest an area of onset and ?no incontinence or tongue bite. ER eval including head ct (and probably some other screening labs) were unremarkable. risk factors for seizure include a sister with seizures in adolescence and at least one head trauma (biopsy) but no known cns infection/tumor, etc.
of the two episodes, as described and with obvious limitations in this setting:
the first is concerning for ms (also could be “ms mimics;” stroke; transient MRI change after unwitnessed seizure or trauma; congenital–ie present since birth–scar of no clinical singifcance; other scar due to infection/trauma; various malignant or nonmalignant tumors; more) and the second for seizure (threre are other possibilities, but would consider this presumed seizure if all available description from you wife is consistent with seizure; it sounds
like she may have caught the end of it, though).
your followup studies may resolve this and provide a parsimonious explanation with a single diagnosis (eg, demyelination of neruon’s axons with two attacks, the first manifesting as sensory change, the second as seizure and a ring of certainty) or there may still be some uncertainty. the tone and content of your posts suggest you have enough experience with these kinds of realities in medicine/life to handle ambiguity, if present, appropriately–a huge plus.
i think the concepts of my prior post still apply, but would add :
-
MRI brain AND C SPINE, with/without contrast for ?changes versus prior MRI;
if so, suggstive of any particular diagnosis? depending on where your sensory changes
were in the 2.5 year ago symptoms, other parts of the spine might be helpful too. -
IFF the mri is stable/negative/normal/non-diagnostic, consider (?repeat) LP for
spinal fluid along with VEP/BAER/SSEP (light flash, click noises, electric stim in the limbs to
track timing of signals as they progress from receptors–eye, ear, sensory nerve, respectively–
to higher levels of the nervous system). The LP is looking for any sign of infection or
inflammation or abnormal cells, along with patterns of proteins that are usually but not
always (like 95%) seen in MS (and some other disorders). -
EEG; consider repeat or 24 hour ambulatory EEG if spells persist.
-
prolactin level if seizure/spell returns; helpful if elevated because suggests seizure.
-
ensure basic medical eval (medical history, exam, tests as needed) is without evidence of systemic/other problems; ensure normal b12, thyroid, lyme, other labs–likely already done back a few years ago. Phos/Mag/Calcium, something like a “chem 20” with electrolytes, renal
function, liver function. some of this likely NOT done in the er; your pcp or neuro can evaluate. -
i would hold off on the heart stuff (echo, 24 hour holter eKg, tilt, vascular imaging) unless the above is unrevealing OR there’s early cardio/stroke problems in the family.
-
your neurologist may already know a lot more about your family seizure history,
including number of sibilings and characteristics of her events. this could be important because there are some genetic syndromes that could be tested for, providing additional
certainty and prognostic information about you and potentially your kids as well. eg, there are
autosomal dominant forms of nocturnal seizures. eg, she might have something called
JME if her spells started in late child/teen years with a typical clinical picture.
so make sure you have as good an account of her situation as possible. -
from the treatment standpoint, i think the seizure risk factors and prior unexplained neuro issues/biopsy push your providers to “do something.” if there was no family history and none of the right numbness/mri finding/brain biopsy, it would be very reasonable to see how things go without medication.
with the risk factors/history, though, “doing something” may be the wise choice: it would be foolish to expose you to unecessary, small but non-zero risk (ie, increased risk of seizure) on semantic grounds (you don’t meet a ‘textbook’ definition of epilpsy, so let’s withold treatment until/if you do). on the other hand, these treatments are imperfect to begin with, have cost, and have adverse effects both short and long term.
further, if this isn’t a seizure and the spells recur with a premature diagnosis, it will be easy to say, “it’s THE epilepsy.” the result is often more drugs that, under this supposition (not epilepsy) will not help, with expense, adverse effects, etc.
diagnosis of epilepsy is a big deal with implications in every area of life (driving, fire/cooking,
guns, possibly occupation, associated health issues related to any underlying cause of epilepsy (if known), cognitive changes, and relevant to this forum, particular danger in water–open water, pool, or bathtub-- along with ‘driving’ the bike). if you have it you definitely want to know, have it characterized, take the necessary precautions, and continue to live a full life within reason. treatments can be very effective; you can drive again (a personal risk and one that society takes on as well) after some state-specific (if you’re in the US) period of being seizure free.
so it’s REASONABLE in this setting to be on a trial of keppra/other with clear discussion and
shared expectations about: how firm is the diagnosis of seizure/epilepsy? are we planning life long AED treatment, and if not, what’s the plan for re-evaluating and considering a trial off? what are the backup plans if keppra is intolerable (lamictal, depakote, dilantin, tegretol,
trileptal, topamax, others) and ongoing treatment is desired?
these are the things i think need to be considered in addressing this complex situation.
whether ambiguity winds up being low or high, it’s important to know what it is and factor
that into decisions you and your doctors make about further workup, treatment, risks, and
the like.
please message me if you have any other questions, and good luck!
Wow, thanks for all of the input. I just got back from doing an MRI/MRA and have an EEG scheduled in the morning. If this wasn’t a seizure, what could it have been? I obviously was out of it and don’t remember much except as I was fighting the EMT’s as they were trying to prick my finger. I hope this was merely a conincidental seizure, but we’ll see. The worst part is that I’m the fittest I’ve been in years and ready for a great season. It’s always something. I’ll keep ya posted. Chainlightning, my email is tagrappo@hotmail.com if you have any other info. Thanks to all of you who have taken the time to write.
yup…several. Had to stay a week in the hospital for observations. Lots of tests. In the end, they let me go and I got to keep my DL, but they told me I am at a HUGE percentage higher risk for having them in the future. The cause was a really really really bad accident. Head on collision while on a bike with a van. My helmet saved my life.
tommy
I had two tonic clonic seizures five years ago at age 32. Right before and right after our 3rd child. Probably stress and lack of sleep related, but no cause was ever determined. I’ve been through a few MRIs, eeg, tilt table test, ambulatory eeg, heart rate treadmill stress test and a couple other things I can’t remember. I started on dilantin but that was making me tired a lot and depressed. I also had a hard time getting my heart rate up while on that. My training HR was down about 15 bpm compared to prior years. I switched to lamictal and have had no problems or side effects. I’m on the generic version, Keppra, now.
Every now and then I feel weird but I’m not sure if it’s anything or just being paranoid about something happening. At the time I really thought the worlld was crashing down. I had gotten into tri’s the year before and was loving it and was worried about losing it. I don’t feel as invincible as I used to. I still tell the lifeguards that I have epilepsy and to keep an eye on me even though I haven’t had an episode in 5 years. The pool worries me more than seizing on the bike or run. After taking the winter off, my doc didn’t have a problem with me going back to training and the next year didn’t show any drop off in performace.
Best of luck,
let me know if you have any questions
Barry
Thanks for your post. All of my tests came back negative and all I can say is that I was an absolute train wreck last week. Being in the restaurant business and being as Type A as you can get, I’m pretty used to being stressed. But like you, I’m a little afraid now. It’s only been a week and I’ve been in the pool twice just praying nothing happens. Moving forward, I am going to really walk away when things are getting stressful, especially when I’m wearing a ‘cold sore’ on my lip from stress anyway. I have a sleep deprived EEG in a few weeks (only 4 hours of sleep in a 24 hour period…big deal right) so we’ll see what happens.
Take care.