new onset of seizures

[Jessdenn82]

well lets see on xmas eve had a full blown t/c and when I came out of it found the ambulance was comming to my house which suprised the heck out of me cause before this I was not aware I was having seizues I have three children 10/7/22 months and from speaking to my oldest son found out that this has been hapening since aug the kids were very calm on xmas eve it was my mom and my husband that stated " thought you were going to die on you kitchen floor and we felt so helpless" and the kids were like oh she will be fine in about 10 min I feel absoulty horrible for not beleiving my kids when they told me I had been passing out since I had no memory figured my blood sugar or BP was getting low and causing these spells which now looking back I wish it would have been from that I didn't go to ER that eve cause hospitals bacially stop over the holidays however I did go the ER over new years cause I had an absence seizure as well and my heartrate was sky high they did a CT scan of my brain which was normal and put me on keppra which is making me snap at my family and have horrible mood swings and despite being on the med I still had a seizure last eve with the kids here and no adults once agian I am a RN and can't work took a temp leave from there also haven't been driving due to the safety risk I am inconviencing everyone in my whole family I am so pissed off at the world and feel like I have lost control of my life I have chronic back pain which I was taking ultram for and also have alot of trouble sleeping and take ambien but no longer taking them due to the ultram lowerng the seizure threshold I feel like damn I can't take anything and just have to suffer through all this now have been getting the worse headaches of my life that wont' go away and can't take NSAID's either because my liver enzymes go skyhigh with just half the recommened dose my husband is having such a hard time dealing with all this he is terrified that I am going to have one and not come out of it when it is just me and that baby here and I told him you dont' think I am scarred of that as well but I need him to be understanding and talk to me cause I am already so stressed out because of all this esp the money from not working, not being able to drive, having to depend on people for everything it sucks I feel like I am two I got into see a neuro dr. today however found out when I was there that since my husbands insurance changed I went and was seen for nothing and all the tests they were going to do I have to go see nother neuro dr and havie them prescribe them just so it is covered also have to find a new pcp as well and it was like great just one more thing I can't handle anymore my stress level is already so high and then the dr is like try to avoid stess ya right sure ! my kids are scared to be home with me alone incase I have another one my 7 year old asked me today mommy are you going to die can you just please stop having these seizures I wish it was that easy i just don't know how to deal with this i broke down into tears I have been an absolute basket case I am so tired all the time and the meds are just makng me more tired and the moods swings but the altrenative is having seizures don't know what is worse i told my mom today I remember when I was little they did an eeg apx 15 yrs ago cause one night I walked outside and had no memory of it not sure if it is related or what I don't know what to say to my husband asked him what do you want from me I just cant' snap out of all this and not be worried about things I feel like I am just slowly loosing things one thing at a time and am a prisoner in my own house my husband is on the verge of having a nervious breakdown about dealing with all this he dosn't understand why things and tests can't be done right now tried to explain to him it is a proccess and all the tests take time to get done and to get results back it's not like I can take a pill and be magically curred I know my feelings are normal but that dosn't make it any easier to deal with I feel like a horrible wife and mom and feel like I am pushing away the people I love the most how do you learn to cope with this

 

[Nakamova]

Hey Jessdenn,

Welcome to CWE, you've come to the right place. First, an enormous hug to you, you need it. Take a deep breath. There are things that you can do short and long-term to help.

1. Keppra probably isn't the right drug for you, given the mood swings. You'll need to get that changed ASAP, but in the meantime try taking a B vitamin supplement with B6 -- that can help with the anger. Melatonin is an over the counter supplement that might help you to sleep.

2. You and your mom and your kids and your husband are all consumed with worry right now. It's time sit down all together (maybe first without the kids, then second with them) and get some of this stuff off your chests. A crisis can be hard on the ones we love. If you need to vent (and it sounds like you do) CWE is a good place to let loose. Is there's a counselor or friend who you and your family can talk to, either separately or together?

3. You need to get a doctor(s) on board with finding the right meds to help with the back pain and the seizures. I know it's tough being between docs, but if you can, try and move up your appointment with a regular doctor and/or neurologist. There are other AED meds out there that might work for you. And while it might be hard to do this now, eventually you should try and keep a detailed seizure journal, tracking not only seizures, but also things like hormones, diet, sleep, metabolism etc. If you can isolate and avoid any triggers that can help reduce the seizures or make you less vulnerable to them.

4. It's okay to be angry and scared. It's okay to ask for help. Being proactive and engaged is one of the best ways to take control of the epilepsy and keep it from controlling you and your family

Take care,
Nakamova

 

[alivenwell]

Wow! Definitely sounds like a little stress to me. Worrying about everything just kind of aggravates epilepsy as well. The rapid heart beat sounds like a major issue to me. I'd suggest absolutely no stimulants like caffeine, tea, chocolate (tough I know), smoking, or over the counter stuff. They hide them in those new 'sports' drinks.

One philosophy I lived by when I was in a similar situation is that I cannot fall from the floor if I'm already sitting down there. I've seen chairs that have no legs which support the back. Maybe they would help minimize injury to your back. I personally use the microwaveable heating pads instead of medication for pain.

Check out foods in your diet. There are some ingredients in them that can actually aggravate epilepsy. Gluten, whey (from milk), and soy are the biggest offenders. Get enough potassium from peanuts or bananas. A lack of electrolytes can aggravate a seizure. I always have sports drinks on hand with no caffeine, Ginkgo Bilbo, ginseng (read the labels!) or some other mysterious ingredient. Soy is included in a lot of ingredients we frequently see. Just watch Food, Inc someday. It's an eye opener.

Some people can pass out simply from a low sugar level. And, while you're relatively young, you might want to start researching calcium supplements since a lot of epilepsy drugs cause osteoporosis. I'm not sure if Keppra is one of those in the osteoporosis list, but it might be worth researching.

I am taking Lamictal and have had excellent results with it.

I agree with writing down everything (or putting into your computer) as was previously suggested. The more detail you have, the more you will be empowered to get control of seizures.

 

[skillefer]

I second Nakamova's post. Just one thing to add. Right now, you are feeling frustrated and out of control. It's time to take back control. If you were a patient in the hospital, the staff would have a specific action or treatment plan. Now, you need to draw up a plan for the kids and the hubby and mom to help you. Ok? This will help your kids to get back to not being scared. So, draw up specific plans for what the kids need to do if you have a seizure. Write it out and post it on the fridge. I have an 8 year old at home. He has three specific tasks to do if I have a seizure. 1) get an adult...either my hubby, mom-in-law, or 911
2) get a damp cloth or paper towel and put it on my forehead.
3) If there's anything near me I could hurt myself on, try to move the object away.
Have specific jobs for each person in the family, and a backup plan incase certain people cannot be reached. my employer knows that if I have a seizure at school, my husband is to be called before they even consider 911. ( I really don't need an $800 ride to the hospital..just to be told to go see my doc. )

I also have a 6 month old at home. I do most of my interactions with her while either sitting on the floor, sitting in the middle of my bed, or sitting in the living room where other people are. Safety first. I don't want to drop her onto a hard surface.

Low blood sugar can trigger seizures. so it's very important to make sure that your blood sugar level is good. This is why I advocate 6 small meals a day. By meals, I mean that it should fit on a dessert plate and consist of a protein as well as a carb. All carbs should be low-glycemic...such as whole grains.

Try to get rid of all of the processed sugar in your diet. And if you drink any caffeine (tea, yerba mate, coffee, sodas,energy drinks) stop. Also, if you are on a diet and ingesting anything with aspartame or nutrasweet, like diet sodas, stop. Aspartame can trigger seizures too.

 

[Jessdenn82]

new onset

I know what I should be doing if that makes any sense I just think well what would you tell your patients but it is so different when I am now the patient tried to sit down with my husband and kids last eve and explain to them that not every seizure I have I need to go the ER for but since my husband isn't in medicine he dons't exactly agree and he is also very angry that the testing can't be done like this week he finally broke down and told me that it's not that he is scared of me being alone with the baby he is afraid of me having a seizure when only the baby is here and it lasting too long and me not making it through it told him I am sorry he feels that way and I am trying to get into dr. office as fast as I possibly can but I can only go as fast as they will let me i told him you talk to my mom you need to talk to me more I am your wife I need to know how your feeling and you need to understand that is all new for me too I have lost all my independence for the time being and i know it is for safetly reasons but that still dosn't make it any easier to cope with and he hates me being on the keppra however tried to explain to him even know the moods are really bad that is better right now than me not being on anything till I can get into another neuro dr. and thats the nurse in me talking which is who I am trying to listen too right now however the patient in me want to say oh just stop taking it cause you don't want to have mood swings and maby you just wont have a seizure but I know I can't do that and unfortuntaly dr dosn't want to take me off med right now cause I coulnt' follow up with them due to the insurance change which makes sense and he was also like u r so stressed when you see other dr you should have them give you med for anxiety too thanks alot I guess

 

[Nakamova]

Sitting and talking to your husband is a great start. You need to be patient with him (and with yourself). It can take a while to get used to the stuff that epilepsy throws at us. You might suggest to your husband that he join CWE as well -- there are plenty of caregivers here who can give some perspective and relate to what he is going through.

When you do get your next appointment, bring a list of written questions you and your husband have. Ask the doctor to explain about the different kinds of seizures, and when ER visits may or may not be necessary. It may be easier for your husband to hear it from someone else, even though you have medical expertise.

Take care,
Nakamova

 

[Jessdenn82]

new onset

Me and my mother are both RN so he does talk to her and I know that’s good but when I was talking to him and my son last night like about if my oldest is here by himself to call an adult at the start of a seizure since he isn’t the best at recalling the time so an adult can time it and know if it is lasting too long and if EMS needs to be called my husband just shut down started crying and wouldn’t say anything to me he doesn’t want to hear that I am scared or what I am scared about think I get overly scared as well cause I have seen so many of my patients come into the ER and die from having a seizure that lasted to long or cause EMS took to long to get there I have been trying not to think about these things as it just stresses me out more but the more about medicine you know and see can actually make things worse I did tell my husband about this site but think he is ready to have a nervous breakdown himself and not sure if he will talk to strangers about how he is feeling I told him I joined cause no one really knows what I am going through in my family and I need someone to share my feelings with that isn’t directly affected by the situation called the neuro dr today and even though new insurance don’t require me to have a referral the office does so now had to pick a new pcp that knows nothing about me and seeing them tomorrow then will have to get referral and can then make appt with neuro dr after that in the mean time despite being on the keppra had another t/c seizure two days ago which just made my husband even worse to try and talk to which isn’t like him he is normally so calm and easy to talk to I just think since he saw me have t/c seizure on xmas eve his outlook on things changed him and my mother get frantic if I don’t answer the phone immediately I am so tired all the time and have an horrible headache which is now going on for about 6 days my whole body hurts I can’t sleep

 

[knothing]

Welcome to CWE. I can only say sorry that you have to go through this but the good news is that you are not alone.

1. You may be a nurse but Epilepsy is vastly misunderstood on all levels of the medical community. This has nothing to do with your ability as a nurse, it has more to do with lack of education on a very confusing subject.
2. Neurologists are not subject matter experts. My 1st Neuro just put me on Keppra because it was the latest and greatest seizure drug he knew. He was just a general Neuro.
3. Keppra like any Epilepsy drug varies with side effects, adjustment time, and dosage. Also it may not work.
4. My Keppra mood swings are kept under control with 100mg of B6 per day. Even then I cannot be perfect.
5. Sadly this is something that requires patience and acceptance that it may be slow moving.
6. Educate yourself and your husband. Using this site is a great tool to educate yourself.Odds are there are more types of seizures than you were ever aware of. When I got educated I discovered I was having seizures my whole life but never knew about it. Talk about being stunned!
7. Find a Neuro that you can work with and if you can find a Neuro that specializes in Epilepsy/ Seizure Disorders (Epileptologist) you will get greater care.
8. Look for possible triggers to the seizures. This is not easy and for some people like myself there are none.
9. GET SLEEP! Not matter who you are if you do not get the amount of sleep YOUR body requires it will weaken you. If you are weakened by lack of sleep you will increase chance of seizure. Myself I only need 6hrs but when it is time to sleep I have to get to sleep. (real pain with kids)
10. Work on your support structure and your husband must do the same. Support takes time but is so worth it.

I am going to stop at 10 items. My wife is very supportive. She has asked how I handle myself so well after a seizure and I told her 3 things get me there. (I know here goes another list)
1. I refuse to be put down by it. (I put up a fight to get up after a T/C)
2. I don't remember it so I am not scared.
3. I have her to help me out.

One step at a time and you will make it to where you need to be. I hope this helps in some way.

Also don't forget to smile and laugh everyday. Sure it's not a cure but it does help a lot!!!