Hello. I'm Cetacean. Glad to join you!

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Status
Not open for further replies.

Cetacean

Pillar
Messages
68
Reaction score
0
Points
31
Hello. I'm Cetacean from San Francisco.

Chronic Temporal Lobe Epilepsy. I don't have it. It has me. Main trouble is it causes chronic insomnia daily and all that goes with it. Medications (Oxcarbazepine, Klonapin, LOTS of medical marijuana) keep it just barely under control most of the time. I spend weeks on my back sick when they do not.

Seems the epilepsy is due to a head injury from a bike-auto accident at age 5. Managed to get a long way in life with this problem behind my eyes. :brain:

I am 48, bald, blonde, and brawny; educated to an MBA, and managed to work in Japan in Japanese at a big car company HQ exporting their vehicles to Europe back in the early 90s, and to travel around the world (in one direction business class!) before the symptoms took me down. I also translated a book of Japanese spiritual poetry "Conversations with God" into English, and actually got paid for it.

Now I have much happier work doing in-home care for people far worse off than myself. It's great work if you can afford the wage. :bigsmile:


Actively seeking alternative treatments short of surgery. Currently pursuing EEG Neurofeedback. Anyone been there and done that?

Interested in sharing experiences with other medical marijuana patients.

Also wish to support other patients like myself whose illness has led to social isolation.

I look forward to meeting you all!:hello:
 
Hello, there, Cetacean!

And welcome to CWE!!!

This is a pretty cool place you've come to. Mr B has made a pretty neat home for all of us here........

RobinN's daughter is going thru neurofeedback, and MrB's wife, Stacy has used it, and still does, I believe. Hopefully when they swing on thru, they can tell you more about it.....

Now, where's Buckeye with his coffee? Mine's cold........and TeeTee better be learning to make my filet mignon correctly...... (inside joke...you'll find out sooner or later)

Welcome!

:bigsmile:
 
Hi and welcome to CWE. It's a great source of information and support, as I'm sure you'll find.

As Meetz said, Robin's daughter and Stacy have had success with neurofeedback. I'm looking into it for myself, but am finding that it may be out of my budget at the moment...

Medical marajuana isn't legal here in TX. I tried it when I lived in CO, but didn't have any success with it. I hated more than the pharmaceuticals. Being high was like having complex partials to me--forgetting what I was saying mid-sentence, wandering mind, random thoughts, etc. It didn't stop the szs, just made me not care so much ;) Not for me

Bernard has a link to a list of alternative treatments and ranks their success--you should check it out.

Anyway, welcome
Morgan
 
Yup... my daughter is doing Neurofeedback and is doing marvelous at the moment.
It is such a ray of sunshine for all of us and worth EVERY PENNY!

Welcome Cetacean - from all of my reading on neurofeedback, it can work with brain injuries. Check out some of the info we have posted around the forum, and start asking questions.

Oh BTW... I spent my early adult life after college, in S.F. Lived in Marin and worked on the Embarcadero at Landor Associates. Loved it! Trying to figure out a way to get back north.
 
Hi Ceta,

Glad you can join the group!! Your letter was really a great "get to know you".
I have temp. lobe complex seizures as well..probably from a head in in H.S. but who knows?? I am a 40 yr. old, married, Mom of 2 great teeneage children and we actually have family in San Fran. also. I hope your seizures are in a good phase right now. Before I was finally (it took a number of yrs.) diagnosed I suffered terribly from insomnia and also my seizures are nocturnal.
When you can't sleep your whole body is just screwed up! You will really glad you are in the house with a great bunch of people! Do you like to be called Ceta for short?

Michelle : )
 
FYI -

Questions To Ask Your Insurance Company About Neurofeedback Coverage

Do you cover biofeedback?
If yes, is it under Medical or Psychological Services?

Will you cover biofeedback for (your symptom)?

What rate do you pay? (e.g. 80% of usual and customary vs.80% of billed amount)

If it is covered under Medical Services, do I need a prescription or letter from my MD to say it is medically necessary?
Do I need to send the letter before I see the biofeedback therapist or can it go in with the first bill?

How many sessions of biofeedback will you cover?
Per year?
Before I see the doctor again?

Is there a limit of total amount paid out? (e.g., pay for biofeedback only to $1500 in one year or 6 months)

Do you pay an out-of-network provider?
If so, do I need to see my primary care physician to make a referral to a biofeedback provider?

What is the licensing requirement of the provider?

Would it be helpful to have the biofeedback code?
If so, it is 90901 (biofeedback).

http://www.eeginfo.com/institute/clinicalservices.html
 
Hi Cetacean, welcome to the forum. :hello:

Actively seeking alternative treatments short of surgery. Currently pursuing EEG Neurofeedback. Anyone been there and done that?

Yes, as Meetz said, Stacy has used it before with great success and is currently using it again. I cannot recommend it highly enough. Just be aware that it isn't an instant results therapy - it takes some time for the training to become a new habit for the brain.

Interested in sharing experiences with other medical marijuana patients.

You might want to check out the older threads listed on these pages:

neurofeedback discussions

marijuana discussions

Also wish to support other patients like myself whose illness has led to social isolation.

Make yourself at home here. :)
 
Welcome C

:cheers:

Come on in and I think you will find a great place to make some new friends. No isolation here.

The coffee is ready. Have a seat, put your feet up, and rest awhile. This is a great place to learn, to vent, and to laugh (my best medicine). You just have to ignore Meetz begging for the my grilled steaks and brats. :) (ongoing joke).

I am 47, not bald, black hair (I ignore the gray), and am an Accountant. Epilepsy for 27 years. I also used to volunteer as an EMT for 20 years, so I understand your comment about how helping others is so much better if you can live with the wages. Kudos to you.

:cheers:
 
Wow what a warm welcome!!

Hi Ceta,

... I suffered terribly from insomnia and also my seizures are nocturnal.

When you can't sleep your whole body is just screwed up! You will really glad you are in the house with a great bunch of people!

Do you like to be called Ceta for short?

Michelle : )

Hey there Georgiagirl, ("walkin' down the street so fancy-free") :bigsmile: Ceta is just fine!.

So great to meet someone else with nocturnal seizures, and to meet so many warm and friendly folks who have some clue about seizure disorders, even about EEG Neurofeedback. (My neurologist has apparently never heard of it. Gotta educate him.)

Thank you for the clue about EEG Neurofeedback not working right away. I got the idea it would take two weeks of treatments to show results. Believing what I want to be true. I am so eager to find out who I am without all this noise messing with my nervous system! Not to mention to fix a lot of key relationships ruined thereby before time takes the chance away.

Bernard, Robin, thanks for the links!

Buckeye, bully for EMTs!

Meetz, may your filet mignon taste better than the cow feels. :bigsmile:

Very glad to join you all!

:clap:
 
Hi Ceta! Welcome to CWE. :) As you can see, we're a pretty friendly crew. :) As for the EEG, I don't use it (can't afford it). Instead, I've been using vitamin supplements, and they've been working great. (might want to check out the alternative therapies thread....I think it's in the library) Like you, my seizures started after a head injury when I was very young (3 yrs. old). Anyway, glad your here. :) Feel free to ask questions, chime in, or just vent. :)
 
Hi Ceta! Welcome to CWE. :) As you can see, we're a pretty friendly crew. :) As for the EEG, I don't use it (can't afford it). Instead, I've been using vitamin supplements, and they've been working great. (might want to check out the alternative therapies thread....I think it's in the library) Like you, my seizures started after a head injury when I was very young (3 yrs. old). Anyway, glad your here. :) Feel free to ask questions, chime in, or just vent. :)

Thanks Skillefer!

Still working through all the valuable info and links folks.

Thank you so much!

Allow me to vent a bit then. Thanks.

Going to see my neurologist this afternoon to persuade him to sign off on the EEG Neurofeedback therapy, which, distressingly, he apparently has never heard of.

This is the high priest and grand poohbah of Neurology at San Francisco General Hospital - where they even approve medical marijuana. ...Oy.

If he doesn't approve, no health insurance.

I don't think I have much of a choice but to come up with the money even if I have to sell a kidney. My situation is clearly deteriorating. But it's nice to hear encouraging sounds about other alternative therapies.

I hope to work with Advanced Neurotherapy in Walnut Creek, -the only local EEG Neurofeedback provider - in fact it seems there may be less than a dozen in the nation. So I gotta feel lucky.

But my PCP (Primary Care Physician) has stated that he won't sign off without consulting with anything less than an actual MD practicing the therapy. The field is full of PhDs but not many MDs.

And the Advanced Neurotherapy therapist pawned the task getting that info to me off on a less-than-diligent assistant, who pawned it back off on me "don't have it handy, but you can easily find it on the internet". Not.

Trust issues with one's health care providers are not good.

I am veeery cranky. Having another early-waking morning with anger neurons firing barrages at any and all available targets again. Symptomatic of nocturnal seizures if I do not mistake my long experience.

Somehow this day will yield what I need. Just gotta believe.

Epilepsy isn't just seizures. It has ramifications in one's entire life. I've GOT to fix my brain!:brain:

Your kind support and encouragement is welcome.

Sure is nice to find people who might have any idea what I'm talking about.:clap:

:rainbownote:
 
I am really not sure if they can be of help at The EEG Institute in Woodland Hills (call info for the number or you can PM me). We work with Sue Othmer and her son Kurt is a member here at CWE. Tami is the receptionist and you can use my name if you call there (Robin Neudorfer). If anyone knows how to get around the insurance treadmill they can or offer names of MDs that might be able to steer you in the right direction.

I didn't go that route with my insurance, so I am still up in the air as to whether or not they will ever reimburse us. I figured I believed in the therapy so much that I was going to do it no matter what. No I haven't sold my kidney yet, but I have cut back in other ways.

One thing that our doctor told us at USC Neurology Dept is, use the term Biofeedback. All doctors understand that term. We were given a perscription with that treatment and I hope to use it with our insurance. I plan on putting together a report with all the facts and figures of ER, paramedics and med costs vs NFB. I think they will see that they will come out ahead of the game.
 
Somehow this day will yield what I need. Just gotta believe.


Keep believing! Medical advances are happening every day. Our turn will come. Even in the 27 years I have had E, the advances and knowledge of E are tremendous.

On those days where you just can't handle it. Give in for awhile. Sit back, stop fighting it, let the day pass without you. Then get back up the next day as if it were any other day.



Epilepsy isn't just seizures. It has ramifications in one's entire life.


You sure have that right. As you meet others on this site, you will see just how true that statement can be. The impact goes far beyond the seizures.



Your kind support and encouragement is welcome.

Sure is nice to find people who might have any idea what I'm talking about.


That is why I am here. It is so easy to talk about E with the other members, because they usually understand exactly what I am saying. They sure have been a lift for me.

:cheers:
 
Ugh...hate mucking about with insurance companies. But I would definitely listen to Robin's advice. :) Glad to see you here. :) You aren't alone.
 
Status
Not open for further replies.
Back
Top Bottom