Dr. Asking my goals

Heavy Kevy

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Besides confirming my pharmacy my Dr always asks what my goal is. When I first started with him my goal was to stop the GM’s. He has done excellent with that. After over 100 PM’s though I’m considering risking the chance of a GM for better control of all the PM’s.
I always kinda wonder why he consistently asked that question.
Still don’t think it’s worth it though.
 

Janus

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What a bizarre question. It's like a David Lynch scene.
 

Porkette

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Hi Heavy Kevy,

Now that is a weird question I've had many different Drs. since I was a kid dealing with my seizures but I never had a
Dr. ask me that kind of question in the past 50 yrs. Wishing you only the best and May God Bless You!

Sue
 

Heavy Kevy

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Hypothetically:
Would you risk 2 GM’s a year for 0 PM’s
Or
0 GM’s for 25 PM’s a year
🤔
 

XxBlaqkxX

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I'm not sure what your doctor's reasoning is here and why they'd ask that. Most times seeing the specialist the goal is always to be as seizure free as possible from what it seems. Not..."Oh, what would you rather have/risk?" Weird.
 

BIGMAN131307

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Besides confirming my pharmacy my Dr always asks what my goal is. When I first started with him my goal was to stop the GM’s. He has done excellent with that.

After over 100 PM’s though I’m considering risking the chance of a GM for better control of all the PM’s.

I always kinda wonder why he consistently asked that question. Still don’t think it’s worth it though.

For everybody the goal is to be completely seizure free. Being able to live the most "normal" life possible without the constant worry of a possible seizure happening.

In your case your Dr has got your GM's under control. Which is great progress so far. But you are still having many PM's.
Seems like your Dr wants to know what level of control you want, and be "happy" with.

IE:
1. No GM's, but some PM's
2. No PM's, but possible GM's

That is your choice. But you also have to consider medications, side effects, recovery times (after seizures), etc.
___________________________________________________________________
In my case I went through 14 AED's (still on one), two rounds of video imaging, 5 Drs, gall bladder and RTLS to get to where I am now.
As of 5/13/2022 it's 8yrs since my last "seizure". Although I do having daily headaches, which can be seizure activity. I haven't had any
CPS or GM's. Which is great progress. My only regret is I took the long road to get here. I could've had surgery back in'03, but I wasn't
mentally ready for it. There was still many AEDs I could try, and the thought of brain surgery was scary. So I opted to go the AED route.
Bad choice on my part. Here is a list of my AEDs side effects battle. The earlier AEDs didn't help, and I dosed out.

Phenobarbital
Tegretol
Tegretol & Dilantin
Tegretol & Neurontin
Tegretol & Lamictal

Taken off meds, because my then neurologist said I just had migraines. A few years dealing with seizures (CPS), I had two grand-mals seizures.
My new neurologist started me back on meds.

Dilantin
Trileptal & Dilantin
Trileptal & Depakote (severe stomach/groin pain)*
Trileptal & Topamax (severe stomach/groin pain)*
Trileptal & Zarontin (severe stomach/groin pain)*
Trileptal & Zonegran (severe stomach/groin pain)*
Trileptal & Keppra (severe stomach/groin pain)*
Trileptal & Lyrica (severe night seizures / bloating / weight gain)
Trileptal & Vimpat (bad rash on arms, legs, and stomach)
Trileptal & Onfi (severe tiredness, stress)
Trileptal (severe dry scalp)

The AEDs did a number on my health. Around '07-'08 I needed to have my *gall bladder out. So along with seizures, I was dealing with IBS & UC.
By '13 my seizures seemed to be getting worse. I didn't know if I was coming or going. I was having CPS at all hours of the days. That caused me to lose track of days. So I decided I needed to do the surgery. I had a second video imaging session to verify the focal point was the same. After
a meeting with my Dr and surgeon I had surgery in '14. I'm still taking Trileptal and the side effects it causes has gotten worse, I'm still seizure free.
________________________


It's not odd that your Dr wants to know what your goal is. Your Dr wants to improve your quality of life.

What level of improvements do you want?
Less seizures, no side effects?
Less seizures, some side effects? Are there some side effects you can live with?
No seizures, no side effects?
No seizures, some side effects?



**sorry for the long post, but I felt it fits** :)
 

Heavy Kevy

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Thanks.
I really appreciate you sharing all of that.
I chose no seizure no side effects. Please 😄
Unfortunately I’m not eligible for any kind of surgery. I’m happy to hear the surgery had a positive result for you. We definitely went through the same list of medication. There’s no way I’d risk having a GM for less PM’s. I’ve needed shoulder surgery after one and didn’t even fall out of bed. I just remembered feeling like I got hit by a bus for a month.
Dr. Appointment Wednesday. I was feeling the best I had in years. Went 4 months seizure free. I could actually recognize the first time prescribed antidepressant working. At least better than a bong hit😎. I did have a nocturnal seizure a few weeks ago. Knew immediately what had my stressed I really don’t want to change anything despite my two daytime seizures last weekend. One requiring stitches and lots of bumps and bruises. I’ve had a bad head cold (could be a trigger?) and possibly felt an aura before I toppled down the stairs. Probably was over tired as well. Maybe just a break-thru.

Thanks again.


Ralph Waldo Emerson
  • “Our greatest glory is not in never failing, but in rising up every time we fail.”
 

Heavy Kevy

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I asked the Dr. today about “goals” he kinda chuckled when I pointed out he has asked multiple times. Gave me a pretty vague answer. Almost jokingly pointed out, “I could make it that you never had another seizure”.
Simple answer….Quality of life ✌
 
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