What you learned from this forum that no Dr. never told you

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Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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jyearta

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I have so many.

I learned about triggers, how important is to take meds. every 12 hours, where and what kind do meds. container to carry in my purse.
Compounded vitamins and other meds.
Most of all the feeling I'm not alone, there are people who do understand me.
 
Everything I ever wondered about after being diagnosed...love this site! Comfort in knowing others understand what you are going through and when you have a bad day you can come here to chat with someone.
 
Everything. I would read articles on here. Then run it by the Epilepsy nurse and she would say, "Oh yeah you need to do that" sigh.

Either way im grateful for CWE, not only for the information but for the amazing people I've got to beat this E stuff with.
 
I learned I had epilepsy. I self-diagnosed from this forum.

When I told my PCP and neuro they didn't believe me, and then I had an extremely abnormal EEG.

How sad is that?
 
well... over the years... Ive learned alot about epilepsy. The dr who I am now seeing, doesnt have half a brain... but because of the lack of neuro's in the area... Im pretty much stuck with him til further notice...

The only thing I am thankful for to my dr now is him giving me a VEEG and me going from two anti seizure medications, down to one. But again.. there was alot I didnt know. I had to find out for myself that by taking sudafed prior, with two seizure medications, I had no problems.. but now Im down to one one medication, It lowers my seizure threshold and I cant take it becuase of seizures coming about. I had to put the pieces together.. but it took me mentioning it to the nurse. Kind of made me feel like I should have been told this prior.
 
When I 1st started having auras (a couple months after the seizures returned) I told my neuro about the funny feeling I had in my head. He said they were auras or warning seizures but didn't go into a lot of detail about them. I learnt heaps about what simple/complex partial seizures are from this forum.
 
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I thought myself a lot about epilepsy over the years but here I have learned more importantly about not being on my own. It is not easy living on your own but its harder when you have epilepsy with nobody who understands your feeling. Ya I have learned a lot about about not being alone or afraid.
 
Basically, CWE reiterates things I learned from my first epileptologist at the EpiCare Center I used to go to. That care center was equipped with an epileptologist, a neurospychiatrist, neuropsychologist, and neurosurgeon(s) dealing specifically with epilepsy, which is very difficult to find now. Unfortunately that center had to close down about 12 years ago and now that dr. practices in Boston. I now see an epileptologist here in Denver, but it isn't the same.
 
I also leaned HERE what type of E. I have. I was 1st. told I had absence seizures, back in 1972.
With me stating I have absence seizures then listed my symptoms, several
people here likely corrected me that I have simple partials to complex partials.

At my Neur. visit after finding this out, I told her I had learned what my type of E. I had, she asked What did I think I told her that on this forum I found simple pArt. and complex partials. She agreed and LOOKED like why would I think I had absence seiz.
 
It's amazing what I've learned here, that doctors did not tell me. From taking B complex and magnesium, setting cell phone alarm for medication time, avoiding caffeine & aspartame, and so much more. I'm so thankful I found this site-learning that there are others who understand is priceless!
 
One thing would be that there's a whole lot more to E than "just" having seizures.
 
That each E diagnose is unique and should be treated accordingly, but its not.

That there is hope outside meds but that meds work for many...

that we should be exploring all options in conjunction with or without meds, that we should not allow the docs to add med on med on med, without FULL thought….it’s proven more often than not - not to work......yet it works for some..

That we need to step back and really look at the 'options’ for treatment.....ALL options….

Oh gosh, I could go on....
 
So many to mention, but with out this site I would have been lost. Getting the on set later in life, 45, is a little hard to understand. It has been wonderful to come here and discuss what is bothering me, or just to know that what I am going through is understood. Thanks everyone!! *sniff*
 
That there are others who are frustrated and waiting for a diagnosis but still living with seizures all the same. The support here is amazing. Thanks to all.
 
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