Looking ahead to surgery, but fear is setting in.

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Bigman, are you still on your anti epileptic medication?

If yes, any ideas when you'll be taken off it/them?
 
Yes, I'm still on my Trileptal. 900MG AM & 1200MG PM
I can come off whenever I chose to. But I am at no rush to do it.

I've been on 14 different AEDs for over 20+ years prior to my surgery.

This is how I look at it. When I go seizure for as long as I was on AEDs,
then I will go off meds.

5/13/19 will mark 5yrs after my surgery. Why should I rock the boat?
 
Bigman, are you going to have a Fifth Anniversary Party?
(If you do, you have to invite CWE). :)
 
It would be good, but I'm going to PT for my shoulder & neck. So I would be too pooped to pop. lol

So far I don't feel much of any improvement. The PT is just wearing me out. My arms feel like I pitched a double header, while head banging to AC/DC. lol
 
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and counting seizure free after RTLS. :)

Well no CPS or other seizures in sight. :) Just my headaches. :(

I finished my orthopedic doctors recommended PT. My shoulder "feels" a little better. But it's still not in the correct position. So that needs to be addressed. The PT didn't do a thing for my neck pain. If anything it made it worse. So as I'm concerned I don't plan on going anymore.

I'm scheduled to see my orthopedic doctor in a week or so. Hopefully I get more information
then.
 
Yayyyyyyyy!! 5 years is awesome. :)
Good luck with the shoulder. And the headaches -- does anything help with them (pain relievers, neck massage, coffee) or make them worse (bright lights, lack of sleep, coffee)?
 
truegrit said:
Yayyy! I just hit two months
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That's great. Take each day/week/month as they come. :)



Nakamova said:
Yayyyyyyyy!! 5 years is awesome. :)
Good luck with the shoulder. And the headaches -- does anything help with them (pain relievers, neck massage, coffee) or make them worse (bright lights, lack of sleep, coffee)?
Click to expand...

The best I can do to any "relief" is sleep. But that needs to be in a cool, dark, quiet room,
with a cold cloth on my head.

Some things that make them worse are: IBS, stress, heat, agitation.
 
That's awesome Bigman
Looking forward to seeing your next update in 4 weeks.
Good luck with the headaches and other medical issues
 
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Months!!!

Well I'm a month past the 5yr mark. You think I should go back to kindergarten? lol

So my shoulder seems to be feeling a little better. But I'm still going to see a neck/spine
specialist about my neck pain. Hopefully it's just arthritis, and nothing else.

Other than that, I'm dealing with my IBS and headaches.
 
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62 months+ still CPS & Tonic Clonic seizure free!!

Well I sen the neck/spine specialist a couple days ago. It looks like it is just arthritis and strained muscles. Not much I can do, just keep it moving. I was told to do the exercises I
was shown at PT. The only other option is Cortisone shots. But I should try the PT exercises first. The doctor was pleasant, and not trying to hack me apart. lol

Because I didn't hurt my neck or shoulder, it has to be the years of AEDs use. At my last
physical my PCP put me on Vitamin D3.


Now that I got that issue figured out I can focus on dealing with my IBS and headaches.
 
BIGMAN,

You have spoken about your IBS and the FODMAPs diet. I was diagnosed with IBS years ago and it has gotten worse in recent years. I keep having to eliminate more foods from my diet. I’ve been avoiding seeing the gastroenterologist because the tests I’m going to have to go through again along with additional tests. I, finally, saw the doctor yesterday because my stomach is getting worse. He wants me to go on the FODMAP diet. I was wondering what your experience has been like on that diet. I’ll be having a colonoscopy and endoscopy in a few weeks. I am way overdue for these tests.
 
I was also wondering do you have Celiac disease. I might have it. I’ll find out when I have the tests done.
 
Music36 said:
BIGMAN,

You have spoken about your IBS and the FODMAPs diet. I was diagnosed with IBS years ago and it has gotten worse in recent years. I keep having to eliminate more foods from my diet. I’ve been avoiding seeing the gastroenterologist because the tests I’m going to have to go through again along with additional tests. I, finally, saw the doctor yesterday because my stomach is getting worse. He wants me to go on the FODMAP diet. I was wondering what your experience has been like on that diet. I’ll be having a colonoscopy and endoscopy in a few weeks. I am way overdue for these tests.
Click to expand...

First thing to remember the FODMAPs diet is a guide. It is a tool that works for some people. Is it worth trying, yes. But don't expect miracles. From my experience it is a hit or miss. You may or may not have better luck.

https://www.ibsdiets.org/fodmap-diet/fodmap-food-list/

Ex.

Bad List: Onions, Mushrooms
Good List: Rice

Raw or cooked Onions are bad for me, but onion powder is ok. So I avoid or eat onions sparingly.

Raw Mushrooms are ok for me, but cooked mushrooms can be bad.

While Rice is supposed to be good. But for me and can go either way.

Stress is also a factor in my IBS. If I'm overly stressed out, my IBS flares up more.

I'm also over due for an updated colonoscopy and endoscopy. But I had other appts to get handled first.
 
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