Looking ahead to surgery, but fear is setting in.

BIGMAN131307

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No more of the Terrible Twos. Now you're into the Thrilling Threes!

maybe this will be the next procedure you undergo:
http://www.stephanieclairmont.com/fecal-transplantation-ibs/
I've heard of that before. From what I know it's kinda like a feeding tube for your intestine.

But it needs a lot of testing to make it viable. My PCP is very traditional. So I usually get the by the books standard testings / referrals, etc.

Maybe down the road, for now trial & error.
 

zombelina

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My repaired brain is 3 today. :)

It's been a long three years. But so far no CPS or Tonic Clonics. The only thing that gets me is my IBS. Now if I could get that situated, I'd be golden. But it's a real roller coaster
of "good" days, bad days, and really bad days. It seems like whatever I try just wont work, or work for long.

Well at least one part of my body is working correctly.
Wow congrats on 3 years!
 

zombelina

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I honestly feel
That I may be that tiny percent that gets almost completely cured from VNS. I've only had a few partials. I owe my recovery to maintaining a very healthy lifestyle, including a very healthy diet, exercise, and ALOT of natural light!
That's so exciting! I'm glad it's been a success for you.
 
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Bigman
Stress is the number one enemy to everyone in terms of health management.
The anxiety does crappy stuff and one does not feel ok.

Its a constant battle for my girl when Autism and anxiety intertwine and the feeling of impending seizure activity makes her life very uncomfortable. The added complication is also IBS issues as you would understand.
Diet and lifestyle is important but also finding what works for you is going to be your job.

Perhaps try and keep a record when you feel these headaches are you drinking enough water? Is there a pattern in your lifestyle . What is not invasive with Trileptal that you could use for the times when those headaches are awful. It may be something simple that is missed....

What is a natural anti-inflammatory that fights inflammation? eg curcumin its not just for arthritis but its a potent anti-inflammatory and promotes digestive and liver health.
The liver is the organ for our bodies detox.

Look into what could complementary with the Trileptal.

Also well done, you have been so proactive to improve your quality of life.
Kudos.
 

BIGMAN131307

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What is a natural anti-inflammatory that fights inflammation? eg curcumin its not just for arthritis but its a potent anti-inflammatory and promotes digestive and liver health.
The liver is the organ for our bodies detox.

Look into what could complementary with the Trileptal.

Also well done, you have been so proactive to improve your quality of life.
Kudos.
Well for the curcumin, I can eat more sushi. lol I enjoy my sushi with ginger.

Another way I can deal with my IBS is all natural and very simple. But it does has a draw back. I find that if a Nap for an hour or two after I eat my stomach doesn't get as flared
and painful. Once I get up I still go to the bathroom. But I just get the urge to go, then go. The bad pain is not there, and I'm not making several trips. The draw back is sleeping after eating can cause undesired weight gain. :(

Well it helps, but it can also hurt. I just need to find a happy medium I can live with.
 

BIGMAN131307

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months!

This past month has been a real stresser. Just dealing with my IBS and headaches
is stressful enough. Then you throw in my computer not working right, not once
but twice. That's a mix for WWIII for my head.

Physical problems that I can see and immediately fix are fine. It's the ones that are not scene, that drive me up the wall. That's why have one rule for my computer for everybody.


Well I managed to get the unknown gremlin out of my computer. :) After a few hours of trial an error. :(

The second stressful problem I had to deal with was my internet.
My computer wasn't connecting. Although the modem appeared to be working fine, my computer didn't show a connection. After close to an hour on the telephone with my ISP,
it was decided that my modem was faulty. The next day I got a new one from my ISP. Once installed, and about a 10 minute telephone call it works. "Knocking on wood" It's working. :)

Well I have an appt later this month with another doctor who may be able to help with my
headaches. Hopefully a little improvement is better than none.

Other than that my IBS has been wavy ride of the good, the bad, and horrible days.

The brightest light in my life, no seizures in sight. :)
 

BIGMAN131307

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months. :)


This weather rollercoaster of humidity is making the summer horrible. :(
On the days I feel so/so it's lousy out. While on the nice days I feel like crap. I can't win.

I'm fed up of medications to treat problems. I don't want to take any more medications. They just seem to bring on more problems, or make things worse. The FODMAPS diet is a good idea, it doesn't work for everybody. I follow it the best way that "works" for me.
My PCP believe my digestive issues is both IBS & excitable gut. Which just makes the problem worse. IE: My stomach growls, I check the clock 5PM Time for dinner I think.
Now stomach goes from growl to aching spasms of terror. :( This is a daily occurrence. This just keeps me stressed out with headaches everyday.

That's the main reason I'm staying with my Trileptal. In the back of my mind I worry that this will bring on seizures at some point.
 

EDBRAD

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Hey Bigman, Congrats on passing that 3 year and beyond mark. Thats great. I just had my surgery back in Jan. so I just hit the 6 month mark. Im tagging along way back behind you and it sure has been a treat not having to deal with those seizures. One thing I have found that started helping my IBS about a year ago was greens, kale specifically. Either cooked greens or as a kale salad. If I dont have a serving or two every nite, I pay the next morning. It doesnt stop me up or nothing like that, it just keeps me regular. Some literature you read will even say kale is not good for IBS, but it has worked like a champ for me. It is something you definitely have to develop a taste for. I am an old hick so I grew up eating plenty of fresh greens all the time. I use an orange vinagarette on the salad. The slightly sweet taste kinda offsets the sometimes bitterness of the kale. It is something you might try.
As far as the surgery, they took parts out of the right lobe so I guess that will make me a left brain screamin liberal activist or even more of one. You take good care of yourself
Ed
 

truegrit

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As far as the surgery, they took parts out of the right lobe so I guess that will make me a left brain screamin liberal activist or even more of one.
Ed
I don't care who you are that's funny
 
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Very happy to read this response... I am also looking to have surgery with my left temporal lobe... At first I was all for it... Just anything to help with these seizures but the more research I do and people I talk to I'm getting so nervous and afraid. I am glad your surgery was successful! Good luck with your future ☺
 

Music36

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Jadelivesepilepsy,

I had the laser ablation surgery on my left temporal lobe two years ago. The laser ablation surgery is less invasive than the traditional lobectomy. My surgery was successful. Have you researched the laser surgery? I must be honest in that I had side effects to deal with, but I definitely feel it was worth it.
 

BIGMAN131307

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+ and still chugging along. :)

Still juggling my headaches & IBS. :( But that is something I'm thinking is the lesser of the evils. At least now I can have the freedom of driving (when I want). The only obstacle for not driving is car & $. lol

Hopefully everyone can get to a seizure free or a more manageable point soon. :)
 

seagull

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For me constant head aches and I vomit with it could not cope.The head aches would deprive me of driving as much as e but I glad you happy with outcome and get car soon
 

BIGMAN131307

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months!! :)

Only issues are the headaches & IBS. :(

I recently seen my PCP. I was given a Rx for Amitriptyline to try for my headaches. The description of how it works, and possible side effects didn't sound too good for me. I reluctantly agreed to take the Rx. But I explained I was waiting to check with my Neurologist first.

When I got home I looked it up, and wow.

Just from http://www.mayoclinic.org/

Side Effects

Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor immediately if any of the following side effects occur:
Incidence not known
Abdominal or stomach pain
agitation
black, tarry stools
bleeding gums
blood in urine or stools
blurred vision
burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings
change in consciousness
changes in patterns and rhythms of speech
chest pain or discomfort
chills
cold sweats
coma
confusion
confusion about identity, place, and time
continuing ringing, buzzing, or other unexplained noise in ears
convulsions
cool, pale skin
cough or hoarseness
dark urine
decrease in frequency of urination
decrease in urine volume
decreased urine output
difficulty in breathing
difficulty in passing urine (dribbling)
difficulty in speaking
disturbance of accommodation
disturbed concentration
dizziness, faintness, or lightheadedness when getting up from a lying or sitting position suddenly
double vision
drooling
dry mouth
excitement
fainting
false beliefs that cannot be changed by facts
fast, slow, or irregular heartbeat
fear or nervousness
fever with or without chills
flushed, dry skin
fruit-like breath odor
general feeling of tiredness or weakness
headache
hearing loss
high fever
high or low blood pressure
hostility
inability to move arms, legs, or facial muscles
inability to speak
increased hunger
increased need to urinate
increased ocular pressure
increased sweating
increased thirst
increased urination
irritability
lack of coordination
lethargy
light-colored stools
lip smacking or puckering
loss of appetite
loss of balance control
loss of bladder control
loss of consciousness
lower back or side pain
mental depression or anxiety
muscle spasm or jerking of all extremities
muscle tightness
muscle trembling, jerking, or stiffness
muscle twitching
nausea and vomiting
nightmares or unusually vivid dreams
overactive reflexes
painful or difficult urination
passing urine more often
pinpoint red spots on skin
poor coordination
pounding in the ears
puffing of cheeks
rapid or worm-like movements of tongue
rapid weight gain
restlessness
seeing, hearing, or feeling things that are not there
seizures
severe muscle stiffness
shakiness and unsteady walk
shivering
shortness of breath
shuffling walk
sleeplessness
slow speech
slurred speech
sore throat
sores, ulcers, or white spots on lips or in mouth
stiffness of limbs
stupor
sudden loss of consciousness
sweating
swelling of face, ankles, or hands
swelling or puffiness of face
swollen glands
talking or acting with excitement you cannot control
trouble in speaking
trouble sleeping
troubled breathing
twisting movements of body pain or discomfort in arms, jaw, back, or neck
unable to sleep
uncontrolled chewing movements
uncontrolled movements, especially of arms, face, neck, back, and legs
unexplained weight loss
unpleasant breath odor
unsteadiness, trembling, or other problems with muscle control or coordination
unusual bleeding or bruising
unusual tiredness or weakness
unusually pale skin
upper right abdominal pain
vomiting of blood
weakness in arms, hands, legs, or feet
weight gain or loss
yellow eyes and skin

Get emergency help immediately if any of the following symptoms of overdose occur:
Symptoms of Overdose

Clumsiness
drowsiness
low body temperature
muscle aches
muscle weakness
sleepiness
tiredness
weak or feeble pulse

Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:
Incidence not known

Bigger, dilated, or enlarged pupils (black part of eye)
black tongue
bloating
breast enlargement in females
constipation
decreased interest in sexual intercourse
diarrhea
hair loss, thinning of hair
hives or welts
inability to have or keep an erection
increased in sexual ability, desire, drive, or performance
increased interest in sexual intercourse
increased sensitivity of eyes to light
loss in sexual ability, desire, drive, or performance
loss of sense of taste
redness or other discoloration of skin
severe sunburn
skin rash
swelling of testicles
swelling of the breasts or breast soreness in males
swelling of the parotid glands
swelling or inflammation of the mouth
unexpected or excess milk flow from breasts

Other side effects not listed may also occur in some patients. If you notice any other effects, check with your healthcare professional.
I think this Rx is a pass for me. I'd rather deal with my headaches & IBS than add any more problems to the mix.

Now to lift up the moods. I did an update to the "Brain Warriors"

Play the video as you read the revised lyrics.
[ame]http://youtu.be/oy_B6T8Nd_w[/ame]

"Brain Warriors" Redux

I lied awake and dreaded active nights
I felt alone
Wondering if those many pills
Could cure the unknown
When I closed my eyes I realized
They came my way
I was shaking in the night alone
Whenever, where ever

Were the brain warriors
Don't need to seize no more
Were the brain warriors
And maybe each tnight
Maybe each night they'll stay gone

I felt the twitch comin' over me
I couldn't bear to explain
I felt the voices callin' me
Callin' my name
It was the same each night, feelin' the pain
That was comin' my way
I was shaking in the night alone
Whenever, where ever

Were the brain warriors
Don't need to seize no more
Were the brain warriors
And maybe each tnight
Maybe each night they'll stay gone
Were the brain warriors
Don't need to seize no more
And maybe each tnight
Maybe each night they'll stay gone

With the surgeons cut, came the seizures end
This time
Breaking the seizures chain
Bounded together for change

Brain warriors
Don't need to seize no more
Were the brain warriors
Maybe each night they'll stay gone
Were the brain warriors
Ain't gonna seize no more
With the brain warriors
And maybe tonight
Maybe each night they'll stay gone
Brain warriors
Maybe each night they'll stay gone
Brain warriors, forever
Brain warriors
Maybe each night they'll stay gone
Brain warriors

:)

The first version can be found here: http://www.coping-with-epilepsy.com/forums/f36/lyrics-inspired-epilepsy-24657/


Hopefully everyone can find some good in life to put smile on their face. As you can tell
I connect to music. :)
 

EDBRAD

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Hey Bigman, I hate to hear that you are still having headaches after 40 mo. Mine have eased up after about 7 mo. but don't know if I am looking at a temporary reprieve or what..... Thats quite a little list of side effects, but then I see they also have the standard disclaimer "Some side effects may occur that usually do not need medical attention" That would of course include death. You dont need no dang doctor, You only need a coroner. And then there are those uncontrollable urges to horde firearms and for tough guys to want to wear those frilly 2 piece outfits. Its kinda tough for guys our size to fit into frilly 2 piece outfits, especially if you are also trying to horde firearms. You take good care of yourself and let me know if you find any new magic for the IBS.
Ed
 

BIGMAN131307

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months.

Neurologist rescheduled my appt. so I will need to wait and ask about the Rx for Amitriptyline. Other than that, everything has stayed the same. All the same
stresses :( , but no seizures. :) :)
 

seagull

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I been on that off and on only time felt rough when I was put on major high amounts before diagnosis was made on epilepsy then immediately taken off it.Apart from super which not nice I had none of the said side effects.At points in life I had dreadful pain and given very mild low dose and not a problem.Not sure if I would take it in morning but night time help me get sleep pain free.
have doctors ever mention acupan it non narcotic but designed for the serverer pain of cancers but now given to other sorts of pain
 

BIGMAN131307

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Pink urine? That's a new one. lol

But I don't think it's right for me.

https://www.drugs.com/uk/nefopam-hydrochloride-30-mg-tablets-leaflet.html
http://www.netdoctor.co.uk/medicines/aches-and-pains/a6147/acupan-nefopam/
Not to be used in

Children under 12 years old.
People with a history of convulsions or fits, for example due to epilepsy.
People taking medicines called monoamine oxidase inhibitors (MAOIs). These include the antidepressants phenelzine, tranylcypromine, isocarboxazid and moclobemide; rasagiline and selegiline used in the treatment of Parkinson's disease; and the antibiotic linezolid.
 

BIGMAN131307

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months still going.

This time of year gets a bit crazy. Stress levels are up, and all over the place. No seizures in site. :) But the IBS is still holding me tight. :( If my health improves or at the very least stabilizes here, I'll be ok.
 
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