VEEG testing
 

:eek: I had my app. at Dartmouth-Hitchcock yesterday and will be going for VEEG monitoring on Mon. Dr. said it will be a 5-7 day stay. Said it is unusual to start having epileptic seizures at my age (47). I have heard from other people though going through same thing. I will stock up on books and maybe a puzzle or two to keep busy. This all rides on ins. co. agreeing that this procedure is necessary.

Garney

Good luck with insurance, Garney :)

I started having seizures probably when I was 45 but was diagnosed when I was 46 and had my first VEEG in Oct., 2005.

Take some good books and maybe some needle work (do you do any needle work?) puzzle books - something to do with your hands in bed - something to keep you occupied. Oh - it's BORING. And you'll have hospital food :eek:

Will they let you have have a lap top? What a blessing that would be! Good luck -- we'll be thinking about you and wishing you the best.

Garney I am so glad that you get to have this procedure. Ellie just went through it very recently so you might want to read up on what she posted. Like Jingle said, bring as much stuff as you can to occupy yourself. Find one of those things at Bed,Bath and Beyond to hang off your bed so you can easily reach everything that you want. A laptop is great too!

Please keep us in the know about what is going on. We all have our fingers crossed for you.

Hi Garney,
I wish you the best of luck with the veeg. I had one done and my neurosurgeon put the electrodes directly on my brain it was amazing what they could find in detail with this test. I found reading doing puzzles in books, and doing a lot of writing to friends made the time go faster.
You might want to get it in writing from your ins. co. that they will cover you 100% before you have the test done. That way they can't come back and say we didn't approve of the test being done. I've done that each time I had surgery just to play it safe.
Tell your Dr. to flash different color strobe lights one at a time to see if certain colors maybe triggering your sz. There is the possibility that it maybe all hormone related.
May God Bless You and I wish you only the best.

Sue

Veeg
 

Porkette,
Thank you for the info. I am hoping that they find something. I didn't even think hormones, but I have been having periods of hot flashes and waking up with my pj's wet. I will mention this to Dr. Actually I will right this down to mention to him, because I forget what I want to tell them about when I have my app.:confused:


Garney
(Cathy)

Hi Garney,
I know everyone is different but my epi told me that the sz. could increase or decrease for me when I started to go through menopause. I found that my sz. increased greatly do to hormones changing so much and I ask myself if that's the reason why I had a TC sz. this past Jan. I've always had absence and cp sz. until I started going through menopause.
In regards to your veeg your Dr. may cut your AED's back while your having the test done to help cause a sz. My Dr. had me drinking diet soda and eating potato chips and slices of pepperoni because these were the foods and beverages that caused me to have sz. I wish you the best of luck and May God Bless You!

Sue

When I was having my VEEG they reduced my meds very much, very quickly.

Because my sz always came in "timed" clusters and I had no triggers I told them that would have no seizures. My epi-neuro said that every one told her they would have no seizures.

When the tech was attaching the thingys to my head I told him about having timed clusters and no triggers and knowing I would have no sz. He said, "Everyone says they will have no seizures."
I had 2 seizures within 4 days -:p - just what they wanted.

Waiting to hear about Veeg today
 

Jingle,

i am with you on that one. I too am afaid that I will not have any activity while in hosp. I am hoping for at least one seizure. will let everyone know outcome. Am still waiting to hear if def. going in this am. If not, then tomorrow.:(

Garney

(((Cathy))) I understand how it feels to sit there and WAIT - how awful.
I sure hope you get into that hospital - 100% insured - that waiting can end and you (oh, how awful to say) have seizures. :eek:
God bless you.

VEEG No Go
 

jingle,

Well here I still sit at home at 2:30. I am told that the dr. did not sent report until 11:45 today!!! I called admit, and they said They could noy do anything without ok from ins. The bed that was reserved for me is now occupied, but they think the person is leaving later today. Unfortunatley I would have to be there by 4:00pm in order to get hooked up. Even if ins. ok's this afternoon, we live 2 hrs. away.
Dr. Thadanis nurse asked if I was getting anxious or upset by all this, and I said of couse I am. She told me that I can't be doing that because not a good thing. (could bring on seizure) Well at this point I will hope for tomorrow, and that a bed will be available.
Keep you posted.:(

Garney
(Cathy)

:( Well, rats, rats, rats :(
I just HATED seeing that you had posted. Isn't that awful ??

Of course, I'm sitting here waiting for my hospital to call me and arrange the same wretched thing. :(

Veeg
 

:) I hope you have better luck then I am having:)

Talked with admit this am, and she said ins. still pending and she would call me later. My husband called ins. co., and they said they don't have any hold up on their end. Trying to get to the bottom of all. Not going in and then find out that ins. isn't coving it after all. :(

Hope you hear soon.
Garney(cathy)

What I did was got the procedure code they use and called the insurance company myself for approval. I do that even when my doctors say that they did to be sure. I don't know your type of insurance, but I have Aetna PPO (open access plan), they paid most of it. I paid $150 co-pay and was billed later for around $1,400 (the total bill was like $7,000).

Make sure when you see them pick the cotton swap off of the wooden Q-tip and scratch it on your head, if you feel pain tell them to stop. Trust me on this one! They only need to remove the dead skin, some get carried away and remove even more and it will stay like an open sore (like when you smash your hand on something and it peels skin off) with a metal electrode atop it for several days.

Pick up some Johnsons First Aid Cream and bring it with you. Also bring a fragrance/alcohol-free lotion facial cleanser. Once you're about to leave, tell them you'll wash your own face (use lotion cleanser). Once you wash, immediately apply the first aid cream to all of the red spots.

I'm not sure if you live near an Ulta beauty supply store, but their signature products run about 9 dollars each (buy two get one free) and they have extremely gentle face wash and toner. I use it always now, but did use for EEG/VEEG and EKG (stickers peel my skin off, too).

If you find my VEEG post, I pretty much told the blunt end of it all. I figure online they tell the gist of things, doctors tell the technical part and I am here to give the nitty gritty!

If you have any seizure increases with your cycle (or even the time your cycle used to be) tell them and try to schedule it for one day BEFORE your cycle or when it used to be. If you have any videos that would increase seizures, bring those, too. Bring anything that would trigger a seizure (order coffee, alcohol, etc). The faster you have one, the faster you get to go home.

Keep us updated!!

*Hugs*

Ellie

awwww dang it now. I hope that you can get in ASAP. Still keeping you in my prayers.

Well - I made it ........ My hospital finally phoned me. I have an appointment before the crack of dawn on March 6 (yes, MARCH 6 :( ) starting with PET, then a long series of MRI, then a trip on the gurney to the hospital room to start the VEEG.

Last time I waited 3 months so I suppose this is better :p

They've phoned my pharmacy to issue a new prescription for Topamax ...all is well.

Go, Garney, Go

Yea for Jingle! Now how about insurance? Have they agreed to it?

Julie - In our case I don't think the hospital would have phoned without the insurance papers in their hands. Bless their hearts - we've had incredible luck with that stuff... never one problem.

As much as I hate the wait I'll have time to get new PJs. Open down the front are necessary and sort of wide sleeves too. When I had this done in Oct., 2005 I bought 7 new sets in, of course, size S. Then I quit smoking and not one set fits. Not one ! And I used only 3 sets. Now I'm starting over ...... I don't use PJs at home. uggggggggghhhhhhhhhhh

I had a pinhead epi specialist put me in the hospital for only two days, in the middle of my cycle, when I have catamenial epilepsy, and when I had finally gotten on the right AED...... PLUS, my seizure threshold is decreased by stress, and I had the two most relaxing days in a looongggg time when I was in the hospital doing nothing :D Needless to say, I didn't have any seizure activity. I was actually ticked that I had to go in in the middle of my cycle, but that was when the bed was open. What a waste of time! The epi then said I wasn't experiencing seizures. Doh. My general neuro had a good laugh over that, since she had seen me at the ER experiencing status GM seizures a few months before that!

So......the VEEG is what it is, and the results can vary. Ihope yours tells you something!

I'm hoping that since we haven't heard from Garney that she is in the hospital! Keeping my fingers crossed.

Veeg results
 

To All,

I entered Dartmouth-Hitchcock on Tues. afternoon for veeg monitoring. Boy those little suckers hurt. Actually its putting them on that hurts. First night they took me off newest med put on. the next morning had an episode. The dr. was called and he came right down. After looking at eeg strip said they did not appear to be epileptic seizures. That night took me off all other meds. Came home Fri with diagnosis of non-epileptic seizures and off all meds except Ativan.
We talked about other possibilities, and said stress related or hormonal or both. I had mentioned several times that I had been having mainly night sweats for about four-five months, but in recent weeks started having a lot during day. Wants me to get levels checked by primary card dr. and also try seeing a counselor to see if stress related. I said I would do both.
Since being home and off meds. I do feel clearer, but still having trouble at times with trying to get out what I want to say, either mixing the words up or forgetting what I wanted to say. Also feel weakness in legs, like I had just run a 10 mile marathon.
Will see dr. in about a month back at Dartmouth. Said if seizures continue or change in any way to call. Going back to work on Mon. Said I could drive again. I haven't driven since Oct2. My husband wants me to wait a week or so. He is very confused about how the episodes are just going to stop:confused: I guess I am also weary. Any way I guess time will tell.
Thank you all for the info and good wishes. Jingle I hope you get in sooner than March 6. Are you on a cancellation list? I will be thinking about you.
Best to all.

Garney:hug:

Oh Garney -- I hope this is the best for you. It is the ONLY thing that matters I don't understand any of it.
I don't see any diffference between a non-epileptic seizure and an epileptic seizure. To me - a seizure is a seizure.
And I don't understand you being taken off your meds permanently that fast. ~sigh~ But we all know I'm not very smart. :o
I'm wishing you well. Please stay in touch. God bless.

Gosh sweet Garney, I'm with Jingle, a seizure is a seizure. I hope they can give you more answers once they analyze the data. I will keep you in my prayers. Big hugs dearie.

Oh, Garney, I'm worried about you! How are you feeling and doing? I can't believe the doctor just took you off all your meds.....I'm assuming because your seizure episodes weren't showing up as abnormal neurological spiking? Is that why he said they "weren't seizures"? Had the medication been helping prevent your "non-seizures"? Dang, who cares what's causing them as long as you are having them, if the medication was working!!

FWIW, I suspect more and more that my seizures are due to chemical imbalances and not something inherantly wrong with my brain. My endo changes some endocrine meds and I've been having nocturnal panic attack-like seizures (partials? simples?) and "head trembles" almost every night. I have hardly had a single good night's sleep in two weeks. (I see my neuro tomorrow). Changed my body chemistry slightly and blammo. Oh, and sure, stress makes it worse. But that doesn't mean that I therefore shouldn't be on my two AEDs!

I really hope you are okay without your meds. Personally, I would seek out a second opinion, but all that matters is how YOU are doing. Take care!

Footprints -- Of course, I'm very interested in every word that's said here. You said you were in hospital for veeg for TWO days ?? Good grief. No wonder you didn't have any. Being taken off meds for two days doesn't have to have a big impact that fast.
Even at my age (61 then) my sz came at an almost catamenial (impossible) schedule and I've had no triggers BUT my hospital told me I would be there for 7 to 14 days. Seven to Fourteen. They expected it to be 7 days before they forced me to have a seizure. I did have two within 4 days so they could do MORE MRIs and let me go home.

Garney -- All of us want to drive so much but what if you have a non-epileptic seizure while driving? That's so scary. I know it's none of my business and I'll shut up now. But I'll keep praying for you.

Off meds
 

I went back to work today.:eek: I am still having episodes of feeling out of the surroundings then back. Also still other symptoms as before. This has been going on since I left the hosp. I am guessing maybe it will take time for all meds to get out of system? As some of you have mentioned, how safe will it really be to drive. I am a bit hesitant, I will not drive this week though. I think that this has now turned into a wait and see what happens next.
Footprints how terrible that you are going through that . I hope you get answers tomorrow.
Hope everyone has a good week:grouphug:

Garney