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5frogs posted:
Hello all! I'm glad I have been lurking and keeping up on the advise and tips of others.

Two days ago while at the local Arbys I had my second episode. Filling cups one minute and coming to in the ambulance. I was standing when it hit and I fell hitting my head, arm, knee, and biting my tongue really bad.

My husband rushed to get me on my side while calling for help. He could not believe the ignorance of people working at this store. They were yelling at him to not touch me and to get our children away from me. He held his own though! He yelled back that he knew what to do and that I was not a LEPER. Ha ha! My children did really well they stayed out of the way and didn't freak out. Since this was the first time they witnessed an episode and they are only 5 and 8 I am extreamly proud of them!

So now The E.R. told me to go to my N/S. When we tried to get an appointment his office refused to see me stating I needed a neuro not a surgeon. The neuros in that office wouldn't make an appointment without a referral from the surgeon. What a joke! The surgeon sent a referral and now they want to "review" it before making an app. I wonder if this has something to do with why its taken so long to get an app. with the neuro before. And now driving 3 1/2 hours to these app. will top the cake. Since I'm blind and can't drive anyway I get to disrupt the lives of others more.

Anyway Now I'm back on meds again and I really don't mind to much. So Now that I've had 2 episodes in 10 months does this mean epilepsy? well in your opinions? I wanted to hit a chiropractor to help my back but this last episode may have helped. It doesn't hurt as much now..

So I hope all is well with everyone in epland today.

Cathi
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dancer86442 responded:
Hello Cathi,

Glad to hear you have been 'lurking'. At least You admit it! I Know we have even More Lurkers.

Yes, 2 seizures do mean Epilepsy. But, Drs Still like the new term 'seizure disorder'. So sad you had to go thru all them hassles to get an appt. It has never been that hard for me. Usually, if needed, Insurance only requires a General Practitioner's ref.

Please, do not start thinking of yourself as a 'burden to others'. Your blindness & Epilepsy are what make you 'unique'. Not a 'disruption' in the lives of others'

I'm Proud of the way your Hubby & Kids handled the situation. Please take time to chek out the books available for all ages on Amazon.com. epilepsytalk.com & efa.org have lists of good books too. Course you may have already heard all this.

OK, you know the drill. Start a Journal! Learn all you can! Personally, I would still see a chiropractor Specialist. He may be able to keep your seizures under control, too.

Will talk more later. Hugs!

Love Candi
 
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saxofone1 responded:
Hi Cathi,

Badges of Honor to your kids for remaining calm!!!! Also to yor husband for taking control of the situation. I think his calmness helped the kids to remain calm. Support is a wonderful thing.

I had a similiar experience yrs ago at a local Taco Bell. The people panicked and called 911. They knew me but had never seen me have a seizure. I had to assure the paramedics that I was fine. I then told the workers not to do that again. At that time, my seizures were very simple/mild.

I used to feel that I was a burden to my mom but it turns out that she needed me to help her understand my ep, and recognize my potentials.

I have seen many books about ep for all ages on Amazon as Candi mentioned.

I don't understand the circle the doctors are putting you through. So unfair to you, and very likely unncecessary. I hope it is resolved soon.

Candi has already posted most of my thoughts. Try to keep a positive spirit. Please keep in touch.

angie
 
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BlazingTiger responded:
Hi Cathi,
We both have very similar conditions as I am legally blind myself. I know how you feel about asking others to take you places, I have to do the same thing. unless there is public transportation in you area. Even that can be a big challenge. As I sit here typing I wonder what type of blindness do you have & Do you use a mobility cane or service dog?



First thing is your husband did an excellent jobs of handling the situation. Kudos to the kids. As far as the restaurant they should be ashamed of themselves. Most people are ignorant when it comes to educating one self. You don't need to be a medical professional to handle a person with seizures just an educated person. Talk about a run around you are getting from the dr.s. Sorry to hear you went through all of this. to answer you question about the 2 episodes. Unless it is diagnosed as another type of seizure type such as PNES. than yes 2 or more seizures is equivalent to epilepsy. I know about back issues 5 pinched nerves to be exact. I would strongly recommend you going to see the chiropractor. I go to a chiropractor as well.

Jason
 
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5frogs replied to BlazingTiger's response:
Hello again!

My vision loss is confusing to me still. I know my optic nerves are flat not rounded as they should be. Vision aquity in the right is 20/200 and the left is 20/50. But VFI or field of vision is 28% in the right and 41% in the left. Loss of color vision is apparent in both eyes. Since I am new to all this vision and seizure processes, I am currently using people to get around. My children think its cool to be the seeing eye dog for me. I have 2 dogs at home but they are getting old and have minds of their own. I suppose someday I will need something more permanant.

My husband is great. He has a step sister with seizure disorder so he knew the ins and outs. Kids are really more resiliant than people think. They get grilled about the protocal to follow every day now.

I have appointments with a neuro in a week and with a SSI eye doc the day before. I'll keep in touch on this forum as I'm positive I will have more concern and questions. Thanks to you all for your insight and tips!

Cathi
 
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dancer86442 replied to 5frogs's response:
Cathi, In our Resources we have a link for Questions for DRS. Please write down what you want/need to know & take it w/ you to Both appts. It is sooo Easy to forget what we want to know, especially when DRS don't give us as much time as they should.

Remember, although Proper seizure first aid is a Necessary 'evil' Your kids still need to learn More. Check out the books on Amazon.com. Take note of Authors/Titles & visit your Local Library & talk to the Research Librarian about the availability of any books. They will either find a Library that does have them & borrow them or they will look for Used Books that will be cheaper than buying brand new. There are Books for All Ages Listed.

Yes, ask us any questions you want that they don't answer. If we Don't know the answer, I will personally Try to Find the answers for you. I got lots of Groups I can ask & Google/Yahoo Search always seems to have answers. Plus side: Jason can relate & may have even more Input for you. So Please keep in touch.

Love Candi
 
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5frogs replied to dancer86442's response:
Hello epland!

So i went to the eye doc for SSI and again all I got was 'How strange" from every one in the office. Every eye doc I've seen in the last 19 months says the same thing. They are perplexed at my condition and they don't have any ideas what to do for it. The closest answer I got was from a neuro-opthomoligist who at first thought it was a vitamin deficiency. After uping my vitamins for 6 months (didn't help) she said well lets check for L-HON. I won't get the genetic test results back til maybe in March next year. It's part of a study so it wouldn't cost anything to find out. Nothing can be done for L-HON anyway so no hurry I guess.

Then I finally got to see a neuro. After all the run around I got making an appt with her she spent over an hour with me trying to get a good background/history. She didn't like the dosage of meds I was on telling me thats a dose for an anerexic teenager! She is switching me off 1,000 mgs of levetiracetam a day to 400 Vimpat twice daily over the next several weeks.

She also sent me straight to the eeg test. She said she didn't want to mess around since my episodes have lasted so long each time. She took bloodwork to check my liver and levels of meds. All in all I say she was on the ball and even told my hubby to shut up so I can talk for myself. He got offended of course but admitted she seemed competent. Ha Ha!

When she took her scope and looked in my eyes she had the weirdest look on her face. she then said 'strange, I'm not an eye doc and I can see your eyes aren't normal.' So now back to the neuro-optho for me. I told my Hubby welcome to the merry-go-round.

Any way enough rambling I'm going to research vimpat a little more.

Have a great day everyone!

Cathi
 
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dancer86442 replied to 5frogs's response:
Hi Cathi,

Been the usual Mixed reviews about Vimpat on other groups. Works for some & not others. But, no real bad side effects have been noted. So, guess that is a Plus. Most common Complaint: Expensive! Sounds like your new DR IS rite on! Glad to hear that!

You would Think that when DRS find something 'Strange' they would want Answers. Hope the neuro-optho tries to find answers for you. I realize that what may be happening has no 'cure' but, at least you will Know for sure.

Ramble, anytime! I'm Listening! Hang in there! Hugs

Love Candi
 
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saxofone1 replied to 5frogs's response:
Hi Cathi,

I hope this new doc is the start of positive answers for you and the family. I can hear your husband now shouting questions at the doctor. My mom was the same way when she would take me. I had to let her know that I could do the appts w/o her and that I would give her an update of what was going on. "Everythings fine, mom. No new worries." Often I wouldn't tell her that I had an appt. Not even a general follow-up.

Anyway, I was on Vimpat for about a year. I hated it. This med kept me dizzy, dopey, sleepy for the next few hrs after I took it. Sometimes I experienced double vision. Didn't feel comfortable leaving home until after I had slept it off. I later chose to take it after I did my morning errands( Starbucks, pharmacy, walks,etc). I checked this out with my doc and he said that was okay just as long as I took it at a regular time so that my levels remained balanced. After a hospital stay(ep monitoring unit, emu) where I did fine w/o it, I requested that it be discontinued. My doc agreed with me.

Because of the feelings I had, I suggest that you ask your doc if it could be prescribed for bedtime. That way you could sleep off those unpleasant side-effects.

I did start off with a low dosage but those uncomfortable side-effects were felt immediately. We all respond to the same meds differently so there is an equal chance that you won't experience such discomforts. This is simply a forewarning of what to look for.

I wish you well. Do keep us updated on your progress. Ramble whenever you feel the need.

angie
 
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5frogs replied to saxofone1's response:
Hi all!

Ok I've been taking vimpat 150 am and 150 pm along with weening off levetiracetam now at 250 am and 250 pm. Next week it will be vimpat 200am and 200pm and nothing else. So far so good. I've not noticed any side affects as of yet. Unless actually having more energy is a s/e. People respond different alright! I have not been tired at all during the day and my house hasn't been this clean for awhile. Yahoo for that. Of course having a bit of neuropathy in my vision I can't tell if its normal or a s/e of the meds. It didn't change from before so I would say no.

I am only slightly concerned going off levetiracetam (since I'll still be on vimpat), since my episodes only happened after weening off it. Will the vimpat be enough by itself? I guess time will tell. I try not to worry about it but I can't help it sometimes. I think after school starts again will be more nerve racking for me. My youngest will be starting kindergarten this year so I will be alone more out in the boonies of Utah. Nothing but oil rigs and sagebrush where I'm at. Oh well I'm not really complaining as it might sound. I just don't like the unknown. I'm not used to it yet, all these changes happening all at once.

So I hope all is well with everyone else today.

Cathi
 
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dancer86442 replied to 5frogs's response:
Hi Cathi,

Have you considered adopting a Dog or training a Dog for seizure Response.? I'm sure you have read previous posts about dogs, since you tend to Lurk.

Energy?? What is That? :0 JK. I got the same 'rush' when i tried Felbatal. I Loved it! Then the drug company went & recalled it. It is back in use again, but, since I am borderline osteoporosis, & it has a side effect of possible bone cancer, I think I'll stick w/ my Pheno's.

One Day at a Time! You will soon, hopefully, not have to make anymore changes. My Prayer for you! Hugs!

Love candi
 
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5frogs replied to dancer86442's response:
Candi,

I thought about a service dog for my vision loss and didn't realize that one could serve for seizure activity until you mentioned it. I have spent time researching it the last few days. I haven't seen anything that doesn't make sense except what is the possability of training for seizure and blindness in one dog. That would be awesome if it could be done without overwhelming me and the dog. Ive only found one pro trainer in Utah so far but I'm looking for more. I know a girl that used to train dogs for 4-H years ago.

I have an aussie who is going to be ten this year. Had him since birth, and I have a border collie who is 4 or 5. Kinda late start for training them but the collie might could work.

Anyway still no known s/e of the new meds. Totally on Vimpat and thats it now. I was wondering if going from never dreaming to having more than one a night could be a s/e though? I haven't read it any where but maybe? I can't decide if I just don't sleep as deep now. before I wouldn't even move at night. Now I toss and turn making my back pain worse and I have 2-3 dreams every night that I can remember upon waking. I wake every time my hubby rolls over or gets up. I'm still not tired during the day though. Yet anyway.

Jason,

I forgot to mention in my response to you, My optic nerves are flatter than normal but they are extreamly pale too. The opto said that they almost never recover from being this damaged. Also my pupils don't dialate properly or evenly. Could explain why my night vision stinks as well.

Best wishes for a great day for all!

Cathi
 
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dancer86442 replied to 5frogs's response:
Hi Cathi,

Your Border Collie would be a great dog to train as dual service Dog. I don't think it would overwhelm you or the dog. Not only Very smart dog, but, may even have a 'sense' for seizure detection. Ever note the BC acting protective of you b4 a seizure? By protective, I mean: overly affectionate or sticks by your side more than usual. Pay attn to the BC's body language/attitude & note if you have a seizure that day.

Did you broaden your Search for a trainer? Possibly Colorado or California?? I know one Lady who took her dog from Canada to Florida to be trained. Just be Very Careful about who you select. There is a Lot of 'scam' trainers out there. If they say they can train the dog to Sense a Seizure, then you Know they are Scamming you. There is no way to train any animal to Sense oncoming seizures. Training should be Response/Assist Only!

I believe I noted some members on FB NSDF site noted dreaming as a side effect of their meds. I do believe Vimpat was one of those meds. This is a New med & so there is a High possibility that not all side effects have been noted by the drug manufacturers, yet. Or it could be a side effect that is 'unique' unto you. Make sense??? Another 'symptom' to note in your Journal & definitely, inform your Neuro.

When you awaken due to Hubby's tossin/turning do you go back to sleep? Have you tried any natural solutions to help you sleep at nite? Here is one we shared on NSDF: 1 cup of fresh squeezed Orange juice. 1/2 tsp of Himalayan (pink) salt, 1/2 tsp cream of tartar. You can chek on-line for other natural drinks for sleep aides. I had another site saved w/ 3 additional drinks. Then a kid spilled my drink on the comp & fried it.

Using Hubby's comp & I really hate to save a Lot on his comp. Not sure if/when I will ever get a New Lap Top or tower Lots of money spent this mth on New A/C, New tires for the truck & a Toyota Turcell being repaired. Next is New tires for Hubby's Motorcycle. I don't work except to babysit 1 kid & that sure ain't gonna get me a new comp anytime soon.

Hope you had a Great Day. I did!

Love Candi
 
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5frogs replied to dancer86442's response:
Hello again. I'm not sure if my bc would work now. she was kicked in the head by a horse about a year ago and seems off ever since. she won't even chase a ball anymore. She would rather chase the Aussie who chases the ball. More research to be done. I haven't noticed any unusual clingy behavior from either dog before a seizure but I have only had two. One started while asleep and one while out to dinner. Unless I'm having some I didn't know about.?

I like to have a warm cup of tea right before bed. Just green tea or something herbal. Works for me. I am sleeping better again at night now. I think the meds have almost adjusted in my system now. Still very energized all day. which is great! I have noticed my mind is 'confused' at times. Nothing serious but I can't find the right word, or how to spell some words usually bigger but frequently used, and sometimes i get days of the week and times of the day confused. (Noted in my journal already)

I can see why one child won't get you very far very fast. Im just happy to not have to pay someone else to watch my three little ones. I bet that would make a dent in my checkbook! LOL

I am sad by the loss of my central air which went out earlier this month. Only I cant get it repaired. It is too old and we can't find parts. Plus the wires were all melted in the unit. Lucky it didn't start a fire! I hope I have no ill affects from the heat in my house. I know some do and some don't.

Well I posted longer than intended again! I just love to chat and I have no other contact with adults except for my hubby. He is ok but doesn't get why I get lonely so much. He is not a people person and I am.

So have a great day everyone!

Cathi
 
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dancer86442 replied to 5frogs's response:
Hi Cathi,

Bet ya thought I would Never Reply. :0 I come Cheap as a babysitter. I understand the Struggles of being a Single Parent. I, myself, never needed a babysitter for my son. But, when in GA one of ZZ's classmate's Mom's got a Job & needed someone for her 2 kids. Then we moved to Utah & it seemed a # of Ladies wanted to work the summers for the National Park we lived in. I had 11 kids one yr. But, I was Cheap back then, to. I could have made a mint. But, they were Low Income & I based My Pay on that. The kids were Happy. I was Happy.

Hubby said it would cost to much to repair ours. He found a good deal thru a local merchant, I think. Thank Goodness. Temps are 3 digits & climbing.

No problem Chatting. I'm pretty much the same. Hubby & son only Talk if they want something. Shoot, he talks more to my Best GF of 35 yrs, then he does me. But, what they discuss they are both Knowledgeable about. And All I know is Kids & Epilepsy Support Groups. My Neighbors are the same way. Course I don't wanna be a part of their Daily/Nightly Drama, either. Lots of Both! :(Hope your past few days have been good to you. Hugs!

Love Candi


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