Help me...Adult On Set Epilepsy.

[ColieJaleh]

Hi whomever takes the time to read this,
My name is Colie and I was recently diagnosed with Epilepsy in late April of this year, 2011. Before April I had never had a seizure in my life and I am going on 23 years old, since April I have had atleast 40, but there probably has been more. They are a mixture between tonic-clonic (Grand Mal) and Absense (Petit Mal) seizures. I started on Keppra but quickly learned it wasn't right for me after I experienced overwhelming depression, nausea, and extreme fatigue. I also heard voices due to the medication, all the while still having seizures while taking it. Then I was admited back into the hospital only 2 weeks after being diagnosed because I had a seizure that lasted longer then 5 minutes, they gave me dilantin and I was severly allergic to it which in turn brought on another grand mal. They decided to drop the keppra back on me until 2 weeks ago (now august) when I was taken back into the ER because I had back to back seizures totaling 13 in one night, upon arrival the medics had to revive me because the seizures caused my heart to begin to fail and my breathing completely ceased. My boyfriend of 5 years, who has been with me since the first seizure because we live together has basically been my caretaker and unfortunately has been subjected to all this as well, which isn't easy for him either but he's been amazing.

It's getting to a point where my memory and motor skills are becoming greatly affected to the point where I wake up at night to complete and utter confusion as to where I am, how I got there, and sadly for my boyfriend, who I am sleeping next to. Which just the other night caused me to have a psychotic break where I ran screaming for the door because I thought I was kidnapped, which ended in me passing out after I head butted my boyfriend.

In one night my life changed completely and it is chipping away at my will power and strength. I feel completely alone and neglected by my doctors because I don't have health insurance, so now not only are my bills through the roof, but doctors brush me off because they know I can't pay. I'm trying to find different doctors but so far no one wants to take a chance with the poor girl. My boyfriend is working tirelessly to get me on his health insurance, like I said, he's been amazing. But I still feel alone, and I don't know how much more I can take. I was a fun loving, goal oriented, optimistic girl before this battle started and since then the meds have overtaken me and I feel like an empty shell of a person and a burden to the man I love. And since my last episode of seizures, and near death experience, I feel like death is a constant shadow behind me, following me.

I am hoping someone with Adult On Set out there can help me somehow. Or someone who had relief after having a whole lot of seizures. My doctors tell me the amount of seizures I am having is incredibly dangerous and that I have had more seizures in these past few months then most epileptics do in a lifetime. I want to enjoy my life and be able to have it somewhat back to normal soon but my life before epilepsy is now seeming like this distant memory and now I am this walking talking liability.

<3 Please Help.

 

[Nakamova]

Hi ColieJaleh, I offer a big welcome to you, and enormous hugs too. You and your boyfriend are shouldering so much right now -- not only the seizures themselves, but the diagnosis, the meds, the financial pressures, and the unknowns. I'm so sorry that a lack of health insurance is making it hard to get the medical care you need and deserve.

A few questions: Have you had an EEG MRI/MRA done? Did the tests indicate any cause for your seizures? Do you have a neurologist who is managing your case? Have you discussed trying meds other than Keppra or Dilantin? Have you been referred to a counselor who can help with the financial issues? If you are having trouble getting proper care, I suggest you have your boyfriend call your city counselor, or state rep to find out what resources are available to you.

I hope that you can get stabilized soon. The Keppra is so clearly the wrong med for you, I hope the doctors can come up with something to do the trick without the nasty side effects. They probably defaulted to the keppra and the Dilantin because [ordinarily] you can get up to a working dose very quickly. (With some of the other anti-seizure meds you have to ramp up very slowly to avoid allergic reactions). Any idea what might have brought the seizures on? I had my first seizures when I was 35 at the time. They seemed to come out of nowhere. Although I was under some stress a the time, I don't know what exactly pushed me over the edge. My seizures are currently controlled on Lamictal, but I started out on Dilantin and then tried Zonegran, before ending up with my current med and dosage.

I'm glad you found CWE; you're not alone here -- members "get it" about you're going through, and we can offer tons of support, empathy, and advice. I hope you feel free to ask questions and vent.

Best,
Nakamova

 

[ColieJaleh]

Thank you so much for responding. I am on Depakote now, I take 1000mg a day of it so far but i've only been taking it for a 2 weeks since I got out of the hospital. I have had several EEGS/MRIS. They haven't found anything substancial on them but they say that it's normal and a lot of times the EEG doesn't see much unless I have a seizure while hooked up to it. They found some lucencies on the MRI though and they are looking into it but we will see what they come up with.

My boyfriend has been amazing but I feel like there is only so much he can do. It's nice to know I have people on here who are warm and understanding. It is nice to have family and friends but none of them really know how scary it is. And to be honest I am so scared. I am afraid I won't live to see the next day most days.

 

[Nakamova]

I hope the Depakote gives you some space to process everything that's been going on. Don't worry about asking friends and family members for help, and letting them know how scared you are. You'd be surprised at what people can handle, and how much they want to pitch in. Can you ask a friend or family member to call you every day at a set time? That can be a good way to offload some of your fear and frustration (giving your boyfriend a break). You don't necessarily have to talk about the tough stuff either. You can use it as something to look forward to, a moment when you can focus on something other than your current situation, when you chat about something superficial, music, movies, gossip, whatever. And it can be helpful to have a friend come with you to doctor appointments -- again, to give your bf a break, as well as to help write down any questions you have and the responses you get.

Writing down stuff can also be helpful. If you can, note how you were feeling in the days and months before your seizures. Write down a timeline of what has happened since. track any symptoms or possible side effects. It can help to get a handle on what has happened and what is happening, as well as providing practical info for any doctors you might see.

 

[alivenwell]

There are phone numbers for various pharmaceutical companies that you can call for potential financial relief. I know they're posted in here and I'll look for them. They may have stipulations on income.

This is such a wild trip, isn't it? It's a catch-22. If you worry, stress could cause another seizure. Then that seizure may cause you to worry more. I listen to music, hang out with my dog and try to take it easy when I'm stressed. Within the past year, I started walking up to 2 or 3 miles or lifting weights 2 or 3 times a week.

 

[Blue Cat]

Welcome and know you're not alone. I can't believe how supportive my husband has been through all this, and that people really want to help loved ones and rarely get the chance, so accept the love and help. I hope all stabilizes for you.

 

[Ruth]

Or someone who had relief after having a whole lot of seizures. My doctors tell me the amount of seizures I am having is incredibly dangerous and that I have had more seizures in these past few months then most epileptics do in a lifetime. I want to enjoy my life and be able to have it somewhat back to normal soon but my life before epilepsy is now seeming like this distant memory and now I am this walking talking liability.

You came to the right place for help and support. This forum was made by Bernard for his wife Stacy, who has epilepsy. It was made out of love and that love permeates throughout the whole forum.

I was diagnosed 62 years ago, when I was 6 years old. I am now 68. I have always had a positive attitude and I have always faced my challenges that have come my way.

You have to think about the life you have now, not what it was, you are not a liability to any one. Have your soul mate join you in this forum. He can learn a lot here.

For instance, have your soul mate ask his insurance company if you can get insurance with them if you are married.

I have had serious seizures over the years. Do not let them get to you. That will only make it worse. Think of the positive things in your life.

That is what I am doing. I have just found out that I have early onset stage of Alzheimer's. I accept it and I am thinking positive. I went straight to my neurologist when I realized how bad my memory was becoming. I asked to be tested. I took the first step in getting medicine for it.

You do the same thing, you take the steps one at a time to get control of it. One thing you can do is take Complex B Vitamins from otc. This is the second step: get control of your emotions. Stress can cause more seizures, you have to calm down. That will lessen your seizures.

I hope I have helped you. Cares and HUGS

 

[motorbill66]

ColieJaleh,
I have adult onset Epilepsy too. Over the last twenty odd years I have had everything from a severely bitten tongue to a broken leg. It ain't easy, but I believe someone else has said what keeps me going. I'm still going, and I decided long ago that I wasn't going to let this mess change my life any more than it absolutely has to.

I used Depakote for many years, and it was great stuff for control but it, like every one of our meds, has side effects. I won't mention them here, as once you know it's all too easy to start obssesing and looking for them. Some effects are quite subtle and take a long time to become noticeable. That's just my take on it. Others might have more wisdom. I now use Lamictal, but while adjusting to it there were also a lot of objectionable effects. It's a bit better now, but not like "The good old days" before seizures invaded my life.

I have never had as many seizures as you have had in such a short time, but I'm 63, and had not established a properly theraputic dosage of Lamictal when I came under a lot of stress and exhaustion, resulting in four seizures (I only have Gran Mal monsters) in a five hour period. Then the next morning at about four I had another while in the hospital. The neuro on call said I was dangerously close to Status Epilecticus, and could have easily been a gonner without intervention.

The point is, hang in there. You're going through the worst of it right now. It DOES get better. I know it's really scary. Everyone here has been scared out of their wits by this. YOU are the most important thing in your life right now. Take advantage of every bit of help and support you can get, and take loving care of yourself. You really do deserve a break. The people on this site have already been wonderful for me, and I've only been a member for about a week! Before that I had spent 23 years trying to coppe alone and with the support of my wonderful wife. People really do care, but only someone who is in the same position can even begin to understand what it's like. And that is something we all need. Good luck, and don't let yourself give up. THAT is the worst disease of all.

Bill

 

[Ruth]

Hi Colie,

I forgot to add that I was going through my dangerous seizures. I was tested for Diabetes to see if that was the problem. It is a simple blood test. It turned out that I have Diabetes. As long as I stay on my Diabetes diet, my seizures are not dangerous. Ask to be tested for diabetes. It cannot hurt to go on a diet for diabetes. I am on the Glycemic Index Diet. Now I have them far and few between. That is another positive step you can take.

Bill is right, do not give up on yourself.

 

[qtowngirl]

Welcome ColieJaleh,
So sorry to hear about your introduction to this nightmare sweetie, but please believe Bill, it DOES get better. The wham! out of nowhere is so scary, we all know exactly what you're going through right now, you came to the right place.
Unfortunately though you didn't just get tossed in, sounds more like slammed in, and for that (((BIG HUGS))). I know it's terrifying and you just want to go back to being you, but at this point the best thing (and easiest thing fortunately) you can do is educate yourself on what is happening to you. Medical websites, books, forums such as this, etc. will give you the knowledge, and consequently the strength, to push forward every day, even when you swear you can't.
It will also help you learn how to stand up to doctors when things aren't working and you want answers. It's so important to have a doctor that is trained and useful, as so many aren't; I'm so sorry to hear about your situation with docs and money - makes me want to say 'move to Canada!' On the other hand having a supportive boyfriend who sticks by your side no matter what is more of a blessing than anything - I have one too =) Love is a powerful thing, we're so lucky!!
Everyone above had some great suggestions too, like can you get on his insurance if you're married (only if you're ready of course!), and being tested for diabetes - though if the ER docs were any kind of doctors you would have been put through the whole gamut of tests already (diabetes, thyroid...). And also like Bill said, YOU are the most important thing in your life right now. Don't worry about feeling selfish about it either my dear, it's just the way it has to be. It's something you come to learn - stress causes seizures - and worrying about other people and not you is too stressful to bear when we're falling apart. Loving yourself (I know it's hard-you just want to throw in the *!@*! towel) becomes a part of what we have to do.
And on the days you don't feel you can... that's what we're here for. I know the road ahead seems too long to even put one foot on, but we all thought that at some point and now some of us are decades in! I'll say again sweetie you came to the right place, everyone here knows how you feel. Please do keep in touch =)

 

[bazpa]

Hi Colie,

It seems hard when this starts for everyone. For some strange reason the seizures don't scare me. I was really sick for 4 years, with no answers to why, so when I first found out, I was just relieved to know what was wrong. Maybe because I was having these all night, and half the day, and I don't remember having the seizures very often, but I do know afterwords, because I have to sleep, can't talk correctly, and am off balance. Kind of reminds me of younger days when I drank too much. I wonder if where your brain is affected has anything to do with being so scared? I am so sorry you are having such a rough time. You are the same age as my daughter, and I would never want her to go through this. The meds are what has been the hardest for me, and seems for some of us takes a long time to figure out. I have been on medication for 10 months, and still am not finding the right combination, or dose that works for me, or doesn't have intolerable side effects. Maybe the Dr. could give you something to relax a bit, as you really don't want to be stressed out of your mind if you can help it. Easier said than done-I know. This is a great place to be. I have learned more here than any doctor, or clinic has informed me, and everybody is so nice. They understand more than your family will-this is hard to explain to anybody, unless you experience it. If you need to vent or talk-this is the place-nobody has ever minded me acting like a huge 47 year old baby! I am more frustrated than anything. Will keep you in my thoughts.
Do you live in a state that allows insurance to domestic partners? My daughter worked for me, and was able to add her boyfriend on the policy as they lived together. If so-they legally have to let your boyfriend put you on his policy. You might want to check your state laws, if his employer is dragging their feet about this. Sometimes there are certain times for open enrollment, but I would think that would have something to do with how long you have shared living quarters, and be determined by your state laws.
You would have less stress if you also were not worrying about huge medical bills. Good luck sweetie.

 

[jyearta]

:agree: Colie, I too want to welcome here. I glad you found this forum.

I just want to add to the other post--that it was here that I learned so much that has helped me. I was diagnosised 40 years ago. And with my doct. they didn't answer some of my simples questions that would have may my life easier.

I don't say this to scare you, I say this to encourage you. No one can understand more E. more than ones here who have been down this road and are willing to share in order to help others.

As you have read the post before me, you saw how kind, helpful and careing this group is.

You are never alone in this.

 

[Ghots]

I am sorry to hear what you are going through and do indeed wish you the best of luck in getting your situation under control.


I had just become an adult a few months before my diagnosis after my first seizure and I was just a few weeks away from enlisting in the military. However, I was automatically disqualified from joining the branch I wanted to join, along with every other branch as well.

I was in despair. I really was. I felt hopeless. I became very depressed and withdrew from my normal social life and ceased to even try to have fun. I just watched tv and slept. After a few months, I regained focus. I began to get myself back together. I started to go out again. I stopped hiding the fact that I have epilepsy from my friends, I stopped treating it like a secret. I stopped letting myself be discouraged because my original goals were not going to work out. I looked for new opportunities, chances for new experiences.

I say all this leading up to this: Keep your head up! So far you have survived an exhausting ordeal and that alone is something to be thankful for! Don't give up. Never give up. Persevere. If you had goals before that this has indefinitely affected, you can find new avenues to venture down and still make something of yourself. Seizures are an obstacle that may changes parts of your life, but that doesn't mean they change who you are! I won't pretend that everything is always going to be roses and candy but I will tell you that there is always HOPE. Don't give up, never stop believing in your personal power to overcome.

Best of luck and God bless.

 

[alivenwell]

As a follow-up to an earlier post, I am attaching a link sent out by Bernard that lists numerous manufacturer's toll free phone numbers for assistance to acquire medication.
It is post # 16 in the following link:

http://www.coping-with-epilepsy.com/forums/f23/when-you-cant-afford-medication-1452/#post18513


Personally, I am finding ways to beat stress. I found that exercise (even just walking) has helped me get rid of emotional stress and sleep better. If you do exercise, is it possible to find an exercise buddy? Or, better yet, a seizure alert or seizure response dog? My dog is from the pound and she is extremely sensitive to everything. She followed me everywhere. That kind of friendship is priceless. My seizures practically disappeared after I acquired her. I did not make that connection between walking her and getting rid of stress.

I tell everybody I know about the epilepsy. I keep myself busy by reading a lot, playing piano, gardening (good to get dirty, I say!), and hanging out with my dog.

Hopefully, your medications will eventually become a magic formula as mine eventually did. I only take brand name drugs and that alone has made a huge difference.