posted
I know that seizures are a complication of lyme or possibly bart or maybe even babs.
I do not have a clear timeline of my infection, but I do have a history of a seizure disorder and treatment for it, that predates my lyme diagnosis.
I believe that the fact that it is considered a separate condition is a mistake.
From day one (the lyme diagnosis), just about everyone in my family said "I bet that's when this whole thing started".
The light bulb went on in all our heads. It was after a camping trip.
My llmd isn't so quick to accept it though. I understand. There are issues of slander, etc.
He likes to leave it to my neurologist, while I keep asking him to take a look (at test results,records) and tell me what he thinks, if anything, this has to do with lyme/TBIs.
I'm just curious if anyone who has been diagnosed with seizures/epilepsy has developed this condition BEFORE their lyme diagnosis.
I believe the manner in which it is addressed may be different.
That may have to do with legalities, I understand that.
Posts: 797 | From New York | Registered: Feb 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I did not know it but, in retrospect, the horrible illness I felt after near whiplash-induced startle reactions - even back in grade school - were probably seizures. I just was told not to be so hyper-reactive. And I always felt so sick to my stomach and dizzy that I just kept my mouth shut until that passed.
With lyme, the "startle reactions" became much more pronounced with a startle of the slightest degree of sound, light or motion triggered violent and grunting nearly suffocating seizures.
It started to get worse when I had mono in college. If I forgot to watch the clock in class and the bell surprised me, I'd be the laughing stock of the class from jumping out of my chair when the bell struck. I became a clock watcher then, to prevent that shock to the system.
But, I may have had lyme as a child. It's hard to know exactly when anything really started. Attached ticks were just way of life in my childhood and I had one odd rash that no one could figure out, so we just trudge on.
Scarlet Fever may have also complicated things. Then mono in college and I've never been the same since. I also deal with genetic celiac (but undiagnosed for decades) and two kinds of genetic porphyria. Those surely complicate matters - although lyme certainly made them worse, too.
It can be nearly impossible to figure out which came first.
Any body system that is weak or has a deficiency or dysfunction will likely become more irritated with the addition of lyme or any infection of that magnitude.
MAGNESIUM DEFICIENCY can cause seizures, too, with or without infections.
After many years of many neurologists and E.R. doctors just throwing up their hands, I do not urge you to try to figure out what started what when - at least until you have all the support parts in place for how to carry on now.
I've seen probably 10 different neurologists in 4 or more states and none were very helpful. Quite the opposite. Just devastating in their dismissal, even with serious problems of speech and walking (and falling). The blanket dismissal - over and over - was startling.
Oh, but part of that is that also my inner ear is strongly connected as the switch for the seizures. And few neurologists get that. It took one brilliant neurotologist who diagnosed the inner ear dysfunctions and told me to get tested for lyme. Too bad he was not able to treat me, though, nor was any MD in my state.
If you have ANY inner ear/balance stuff going on, you might fare better with a neurotologist (pronounced neuro-otologist) but I'd try very hard to find one who is lyme literate. Otherwise, they really like to use steroids and that can be disaster with lyme.
One caution and why all the neurologists sent me packing: I had an awareness (but no muscle control whatsoever) during most of the seizure, after the passing out part, usually. They told me that a real seizure would have made me unconscious for the duration. I know they are wrong about that.
Some of my most devastating appointments have been with neurologists. I really don't think they would be much help to you with the question that you are asking.
Neurologists also do not concern themselves with nutritional deficiencies or with HEAVY METAL toxicity that can cause seizures. Liver conditions such as porphyria - and that connection to seizures - elude them.
Adrenal disorders also seem to have eluded the neurologists from whom I sought answers. Turns out that I do now have an adrenal problem (lyme related, true, but maybe not always) . . . and in examining photos and memory, it may have started in childhood.
Now if you know all that you need to know in order to take care of yourself, you might still search for what started all this. In my experience, that has brought some things to think about but nothing concrete that would change my life today.
For others who may have a structural reason and the brain could be seen clearly with a CT, MRI, PET or SPECT, maybe a better look would answer some questions.
But, for physiological influences that cannot be seen on a X-ray sort of thing, most doctors are not going to take a trip down memory lane to help you find your answer.
The EEG used to diagnose seizures can miss a lot. QEEGs are better but in my case since the EEGs were not sensitive enough and the QEEGs were all done by other than neurologists, the QEEGs were dismissed.
I had three different QEEGs over a couple years' time, with three different professionals: a Ph.D. audiologist; a Ph.D. who worked with autistic kids and a ND who worked with CFS patients.
Each one showed the seizures were based in the right parietal lobe and each one was triggered while I was trying to answer math questions and there happened to be some slight startle such as someone closing a door in the next office.
So, if you are looking for structural connections - of a sort, a QEEG may help you out more than an EEG can.
A QEEG (brain map) tests you while you try to think. That really makes a difference. -
[ 11-30-2010, 05:50 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Some links that have helped me (although the type & spacing in all are atrocious. See if someone else can copy, paste, edit and print for easier reading): ---------------------
posted
keebler, I thought you might weigh in. ...and I'm glad you did!
As I read through all your links (great info, AS USUAL) it occurred to me that I've "played around" with these methods over the years, the vitamins and minerals, the elimination-type diets, looking for an allergen.
We're going back to 1985, here. I've been on some kind of AED therapy continuosly since that time.
Just never was able to get off the meds. The first time I was due to stop, I found out was pregnant. The risk was less to take meds while pregnant than risk a grand mal seizure (I was well-controlled).
Another time I began having "breakthrough seizures". Then the meds were changed. I've still been well-controlled.
Where I stand now is that I am treated for two separate issues.
My epilepsy / seizure disorder has been documented, shows spikes on a standard EEG/ sleeping EEG, in response to lights...
No disability for me though, that's another long, undocumented story .
I have a chronology of EEGs that tell a story of decline. I also have a recent abnormal SPECT, which mentions possible lyme or chemical dependency or something. (That was nice, that they added that in there.)
I have a recent normal MRI, though.
I guess I don't know what kind of help I'm asking for here, lol!!
Just 'supposing that my lyme/co may have begun much earlier than I was diagnosed and just simmered all those years -I always was 'a little delicate'.
Posts: 797 | From New York | Registered: Feb 2008
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posted
ARNICA -that's a new one I haven't heard of before. I'll look into it and get that. Thanks, keebler.
Posts: 797 | From New York | Registered: Feb 2008
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