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 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.
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!
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.
So I am a firm believer in chiropractors! I worked for UPS for years and I went every other week. I went about 2 weeks after the episode to a new one and he did not listen at all. I had told him I couldn't breath when I lay down from rib pain. First thing he said was lay flat on your belly! ouch! So not being able to breath then twisting me into a pretzel and pushing on my chest was the most awful feeling.
I never had that problem with the one I used to go to. He was the best. I am going to see if I can get in to him the day I go to the neuro. I haven't been to him for about 7 years so hopefully he will. He always was a good guy too. He had a cash discount and only got paid what the insurance paid. If there was a balance after he wrote it off. Good guy...
I'm going to check into the tea you mentioned also. Sounds interesting. I like to relax with a cup of tea after the kids are asleep. I had started school for massage therepy a few years ago and learned even the colors you wear can affect your moods. Who would have thought? Thats why I want to paint my walls all green and blue. Too bad the hubby won't let me. He likes the 70's fake wood.
Anyway Thanks for your help yet again and sorry for rambling a little. I think I'm just looking for something to do besides TV.
I've been loitering around to continue learning and understanding.
I am now officially off all AED's but I still want to see a neuro. Due to my location I am waiting for kids to get out of school for the summer for an app. I'll have to have my mother in law drive me to SLC about 3 1/2 hours away. It will definatly be an all day trip!
Any way I am doing ok for the most part. I still have back pain from my episode in Aug last year. Should I be worried about unknown injury? Also when I started lowering the dose of meds I got a pain in my left foot that is sharp and painful. It starts and stops suddenly about the arch of my foot and radiates up the back of my leg to my knee. As the med amount got lower and stopped it happens more frequently and severe. I've taken note of this in my journal thinking it may be s/e or withdrawl? Who knows.
My hubby is still concerned for me. He says I still Jolt in my sleep which wakes him up. I don't wake or remember these jolts so I just write it down for the Doc. Also I've been wondering about exercise. I really need a overhaul physically so is it better to start now or wait for my body to adj to no meds? Well in your opinion? I've been watching what I eat and drink already but I feel the pounds aren't going to come off while I sit around. I know getting to a healthy weight is important as both my parents are diabetic. I would like to prevent this complication if I can. I don't want extreme results that may cause stress.
I wanted to get some opinions about these issues before I talk to a Neuro. And to just give a quick update (or not so quick, lol) Keep up the great work! You all are AWESOME!
Well I actually miscounted the pills. I had enough for the 500 mg dosage a day for 3 weeks. I was on this already for 2 months so he switched it to a 500mg alternating with half or 250mg for two weeks. Then just 250 mg a day for two weeks then 250 mg every other day for the rest. I think I have the pills I just hope it's not still too fast.
I liked the GYN too. He was very helpful and I got the impression he may have more personal experience with ep.
Well some good news came in the form of a gyn. I got in same day for a routine yearly and he was leary about me weaning off under my own supervision too. So he called the ns and not surprising he got right through. (Deep irritated breath)
At least now I have a plan to wean off the meds safely. Ive been having this 'movement' feeling in my abs area. It feels like fetal movement and its been continuous all day for a week or so, The doc thinks it's a s/e of a lower dose. Can a s/e suddenly start 8 weeks after starting a lower dose? I know it takes weeks to adjust but I thought it was 4-6. Just another depends on the person thing? Also would it be in just one area of muscle not all over?
I've been trying to read drug facs closer but it's been difficult so far. Any imput would likely help. Thanks again for humoring me and my questions!
Oh ya, the gyn also suggested having a refferal even if not required by insurance.( None needed for me personally) And even ask the reffering doc to make the appointment. He said its a trick to getting in faster to a specialist! I hope it works.View Thread
Ok no dr yet. The pharmacist agrees its to fast for too much meds. I feel lost right now. My gp is booked for 3 weeks. Plus he has never seen me for any s/e of my surgery. He may even not want to change the dosage prescribed by another. I'm not fond of him anyway. He didn't want to even take staples out of my head after surgery. Oh well, I'll keep trodding along until something works out. The pharmacist mentioned maybe cutting the pills I have in half but also recommended asking a doc first. So (deep breath) I'll keep trying to get ahold of my neurosurgeon or to get into see my gp or a neurologist. I only have about a weeks worth of pills left so I'm hoping for success somewhere. Thanks again.
Hello! I hope all is well in your neck of the woods. In mine it's ok I guess. I had no luck with finding a neuro yet. The NS I've seen wont return my calls so I wondered if you can answer a question for me. I know your not a doc but, how long should it take to wean off meds? The amount I'm at now is 500mg of Levetiracetam at noon. In two weeks it will run out with no refills. Is this too high a dose to stop all at once? I know it was mostly for prevention in my case to begin with I just don't want any further problems if it could be helped. Thanks!