Oh goodie gumdrops....new symptom

[LJ-Bain]

I have now started vomiting up bile during or (just after?) my seizures.
On Sunday I was retching after my seizure and had troubles swallowing and threw up a glass of water.
But today during a cluster of seizures I vomited during 3 of the seizures.

No stomach bug to speak of. With 3 kids I have lots of experience with those.

But hey! Maybe I'll lose even more weight and I'll get to buy new summer clothes! Yippee!

My doctor did talk to his neurologist friend and his friend that in his experience people "like me" usually do have epilepsy but that eventually they do get caught on an eeg during their seizures. Not so me.
He is not willing to look at my case.
I don't blame the neurologist. I wouldn't want to touch my case with a 10 foot pole either. Especially with 7 others washing their hands of me and one specialist keeping silent.

On the plus side it's a nice sunny day. Slept with the window open last night and could hear the frogs croaking with a cool breeze flirting with my curtain.

Off to work soon. Hopefully I don't cluster there. My poor baby boy just ended up falling asleep on the tv room floor since I was clustering for so long. My mom is coming soon to care for them and drive me to work.
My life is dramatic and so very boring at the same time.

 

[PFunk]

You hang in there!!

Are you still on any AEDs? It sucks that you have to wait till August to see your epileptologist. Have you been able to talk to them over the phone?

Vomiting is pretty common, but a terrible weight loss program. I'm sorry to hear that this new sympton has started. I feel like a puky pete after TC's. At least you're not peeing your pants Thats what I tell myself..... Now watch me pee my pants the next time something happens.

Keep your headup and keep enjoying the postive things in life.

 

[jyearta]

You are a real trouper.
Raising children and working.:clap:

I hope you get to feeling better and I'm glad you have a mother to help out.

 

[Nakamova]

So sorry about this latest fun symptom. Do you think it's abdominal epilepsy? http://en.wikipedia.org/wiki/Abdominal_epilepsy

 

[LJ-Bain]

Hi everyone.

Still on Keppra until September P-Funk!
Found out my epileptologist is going on another holiday to Israel for 2 1/2 weeks. I would like to go on as many holidays as he does, geez. But I guess his job is more stressful than mine so I'll give him that.
His nurse said she'll try to see if she can get him to refer me to a psychiatrist in my area since my local hospital won't take me on an outpatient basis. I called a mental health info line and apparently this is unusual and she referred me to another number but they had never even heard of pnes. Shocking. Another self referral clinic is closed for renovations. Bad timing.

jyearta - Am I a trooper? Thanks! I just think of it as going into survival mode though.

Nakamova, thanks for the abdominal epilepsy link but it doesn't quite fit. I have seen somewhere though that vomiting and retching can be connected with mesial temporal lobe epilepsy.

Epilepsy or pnes, either way my seizures are chronic and here to stay.
I might as well get over it. This is not a pity thing just a wake up call to myself.
Seizures and I might as well become friends...they stop by for enough daily unexpected visits to qualify!

Hanging on by a thread but still hanging on.

 

[Nakamova]

Hanging on by a thread but still hanging on.

Time to practice your knots and macrame...

When you talk to the mental health folks, you might want to ask about CBT, since aside from meds, it tends to be the therapeutic mode of choice for non-epileptic seizures. Even if they haven't heard of P. N. E. S., they have probably heard of CBT.

 

[LJ-Bain]

Thanks Nakamova, as always.
I will look into it of course! The path I have been on has been trying so I'll take anything.
In the end though, I know that there are people out there with bigger issues than me...like those dealing with fatal illnesses, poverty, war... so I should question what I really think is important and to remember to count my many blessings.

 

[PFunk]

LJ, your perseverance is an inspiration. You're right things can always be worst, but don't discredit the courage you have shown. You're up against a lot but your pushing through, day by day, week by week. For you, for your family, your still pushing. That takes strength. You're children see a mother who loves them dearly and will let nothing come between them. You instilling them with your strength, teaching them to face adversity and showing them the power of your love... so keep pushing!!

The medical system seems broken. How can your epileptologist just abandon you while your still having seizures. Epileptic or none epileptic, something needs to be done. To many are abandoned by the medical system. It's so sad.

 

[Nakamova]

Once an epileptologist decides that someone is having non-epileptic seizures, they wash their hands of them, and just assume that a psychiatrist or psychologist will take over from there.

 

[LJ-Bain]

Nakamova, I know. It is so true. But then when they don't you're kinda left nowhere. It's been educational.

P-Funk: Sometimes I wonder if I'm just bull headed! But no one wants to live a life of misery. It's human nature to push on. Thanks for the supportive words! If you ever met me I'm really a quiet, easy going, unassuming person. Maybe my husband would say differently though! I preach about my experiences here but most people have no idea what I've been through.

Has anyone heard this little story about the two frogs?

Two frogs fell into a deep cream bowl,
One was an optimistic soul;
But the other took the gloomy view,
"I shall drown," he cried, "and so will you."

So with a last despairing cry,
He closed his eyes and said, "Good-bye."
But the other frog, with a merry grin
Said, "I can't get out, but I won't give in!

I'll swim around till my strength is spent.
For having tried, I'll die content."
Bravely he swam until it would seem
His struggles began to churn the cream.


On the top of the butter at last he stopped
And out of the bowl he happily hopped.
What is the moral? It's easily found.
If you can't get out -- keep swimming around!