If I had it to do it over

[Endless]

If I had to do this whole mess over again...

(This whole mess being epilepsy diagnosis and treatment)

1. I would take doctor recommendations from friends, people in support groups, anybody who might have an opinion. It's like comparing the FDA side effects list to the one on www.askapatient.com. They each paint a very different picture of the same thing. I would not have taken a recommendation/referral from another neurologist. They refer who they know (friends), people known by what they research/publish, and if you are lucky, local reputation.
   
   
2. I would ask for my chart notes each and every time as soon as they are ready. I would review them for accuracy and proper tone. If they are disrespectful, nasty, or riddled with errors I would have changed neuros now, not later.
   
   
3. I would have been familiar with medical ethics and not tolerated any violations.
   
   
4. I would have kept a seizure journal from the start. It's impossible to answer the doctors questions without one.
   
   
5. I would have had a video EEG much sooner in the process. I clears up a lot of things.
   
   
6. I would have gotten educated on my disease more thoroughly and sooner. Even if it pisses off my doctor in a huge way.
   
   
7. I'd stick with medications longer, even if I was miserable. At least four months. Then we could see if the side effects would go away or at least get better.
   
   
8. I would have changed only one medication at a time, and do that very slowly. Then you can see what changes that medication makes in your body, and you minimize the negative side effects.
   
   
9. I would have had my teeth checked every 6 months instead of every year. Also my bones. I found out late that both may be eroding from the anti-epileptic drugs. I'd also insist on a vitamin d test ever 6 months.
   
   
10. I'd go in expecting to feel like c*#p. The anti-epileptic drugs do things to our bodies and our brains, and our minds. I would have taken this a lot better if someone would have warned me.
    
    
11. I would have looked for a "a family member with epilepsy" class or book for each of my family members. They are not doing well with the epilepsy stuff.
    
    
12. I would have added at least 2 hours to my sleep schedule, and another 2-3 hours to my resting time, above what I already needed before all this started. anti-epileptic drugs can make you exhausted. Except may keepra for some.
    
    
13. I'd get a housemate. I'd feel safer than living alone.
    
    
14. I would have safety-proofed my house sooner. Then I wouldn't have found myself outside near the road, or in the kitchen leaning over a boiling pot (thank goodness not IN the boiling pot). Both very dangerous.
    
    
15. I would have gotten brand name anti-epileptic drugs from the start, just so I wouldn't have to deal with the fallout from changes in manufacturers.
    
    
16. I would have protected myself against the many, many head injuries over the years, would have shouted out from the womb to the doctor to put his forceps away, wouldn't have let my sister drop me on my head when I was a new baby, would have run away when my mother suggested I play with the mercury out of the broken thermometer, and avoided all the other brain-altering events in my life.
    
    
17. I'd have plans already in place for when I couldn't drive (even if in that moment I could). It took me some time to learn public transit and to line up other alternatives. I'd take practice rides on the bus to learn the routes. I'd line up sams club trips with neighbors. I'd buy an electric bike or scooter from walmart and put huge baskets on it. Then I could get around even if I was too tired or sick to even walk to the bus.
    http://www.walmart.com/ip/Currie-Ezi...ooter/15773450
    
    
    Maybe a trike instead because I'm dizzy off and on.
    http://www.walmart.com/search/search...h_constraint=0
    
    
    If I was rich I'd get this.
    http://www.walmart.com/ip/Shoprider-...ndingMethod=rr

Anyway, if I had only known, my life would have been so much easier.


What would you add to this list?

[qtowngirl]

I would have been a lot more demanding of my original neurologist in that he not just sit back in his chair as if I'm one of hundreds. 'Next, next.' He did the bare minimum to fill that title on the wall instead of digging to help find anything out. What I needed was an epileptologist and he was barely a doctor - many patient complaints against him as well for that exact reason. I kick myself now for not going to the lengths I had to (travel, time off) to just get the hell out of there.
Endless- other than that I think you covered it pretty good, I couldn't agree more about the class or book for family (and friends on my part). It seems no matter what I say or do to try and explain they don't get any of it.

[julie wishes]

Well HELLO.... wouldn't it be nicer if the doctors provided proper care to begin with so you wouldn't have to write this list It is their job. Just saying.

And all the rest are excellent ideas.

[Eli]

I would have found and joined the cwe community in 2006 and not in 2011! I've learned more in the past year through my own research and cwe members then the drs ever provided.

My first "odd behaviors" (as my family called them) started when i was 6 yrs old, so it only took me 35 yrs to get a diagnosis...../sigh

If I had it to do over again I would've let another egg in the ovary line go in front of me. Thus escaping the conception that occurred that chilly Feb night in 1970....

[julie wishes]

Excellent thread... lets keep it going

[little fruitcake]

I would have gone directly to the ER as soon as my head was hit instead of letting all that blood spill on what was my brain. I would have broken more rules.

[jackier]

Great thread. If I had to start it all over again, I'd try to be a little nicer to myself. And know that I am not alone. Someone, Eli I believe said it best -since I've found this site a few months ago, I've learned more about E. than in all the Dr's appts I've had. I've always said you know your body best, but have never really applied it to myself. Now's the time to start. Take care everyone of yourself!

[qtowngirl]

Ditto on joining the site earlier. Have learned A LOT on here, as well as finding understanding and compassion you just can't get anywhere else, and it would have done me good to have found you guys years before I did. However it's been a year so far and I'm so grateful for that. Thanks guys, luv ya.

[Dolores]

If I had to do it over again, I'd be do much more aware of the effects Epilepsy & Dilantin have on my brain.
I would stop to consider that maybe I'm not stupid. Maybe I'm not fooling everyone else into thinking I'm smart. Maybe it's the E & D fooling me into thinking I'm dumb (boy it did a good job!)

I would realize i should be asking lots of questions, not leaving that up to my mom.

I would realize I should be keeping track of lots of things - my seizures, all the side-effects and especially the internet sites with people willing to share their stories and discuss what this whole dance is like, the different steps you have to take

I wouldn't be afraid

[Crash]

Wow,thats a toughie everyone so far has put down exellent,revelant answers.But if i were to go back to the start,i would have looked in to the social stigma off epilepsy far more,i just didnt get it,nor was i told about it.I wouldnt have put down epilepsy on job application forms because i thought it was the RIGHT thing to do,when its painfully obvious that its NOT!!! Also i wouldnt have got it into my head that the first set off tablets would mean me being seizure free for eternity.

And off course finding CWE,a tremendous help for OUR bunch!!!

[julie wishes]

If I had it to do over again... I would have found the best epileptologist in in my state and traveled if necessary to get the highest quality of care possible.

I would have looked for a doctor who valued my input, and included me in deciding my plan of care.

I would also have appreciated some truthful advice about the E drugs and their long term side effects... at least be given the chance to make an informed decision about whether or not I took them, and take precautions if possible to combat the side effects.

I would also have appreciated being given nutritional advice in order to support and maintain optimum brain functioning and health.

[MuayThaiFighter]

I would have noticed that I developed epilepsy at the age of 16, instead of dealing with it years later when things became unworkable. I should have been smarter and listened to family and friends. I didn't want the disorder, I denied anything was wrong. Would have saved a lot of grief if I was more educated by the doctors I had. So many really crappy Neuros, and really any kind of doctor. Really should have had my video EEG done when I was 16, considering I was fully covered under health insurance.