ADVERTISEMENT
Andrea_McBride

Newly diagnosed

Hi,
I've just been diagnosed with absence seizures at age 28. I've been struggling with the diagnosis. To begin with I thought, hay it's just a name and it will get better with meds so it's a positive thing, but now for some reason I can't accept this.
My meds don't seem to be working so far and all I keep thinking is why me, why do I have to have this, I don't want it. I find myself crying and depressed at the idea of having to take medication for the rest of my life and the fear of having seizures in front of people. My husband is very supportive but my family don't seem to understand it and I feel very alone at the moment. I just can't accept that I have this. It's also crossed my mind that if it had been spotted before then maybe it wouldn't have been so bad and easier controlled although I know this isn't the best thing to do.
I'm sorry for sounding like I'm just moaning but just needed to vent. Just don't see a way of being able to accept this at the moment.
I'm keeping a daily diary on here plus down on paper but my memory is rubbish and often forget if I have had a seizure or not plus half the time I don't even know if I'd had one at all.
I am very grateful for this website though and am finding that gaining information is helping.
If anyone can relate to what I'm going through then I would really appreciate some tips on how to accept it and how to learn to live with it as I know that's what I have to do.
Thank you
Andrea.

Comments

Re: Newly diagnosed

This is the place to vent. There is no judging in here.

First, it is completely under stable to feel that way. Epilepsy is such an ugly word and it carries stigma nd undue shame. The good news is that epilepsy is not a death sentence and it is just like having any other condition. You don't see people with diabetes to cancer hiding, they go on with pride and courage, and so should you.

I understand your feelings, I totally do. I have kept my sons epilepsy hidden from family and friends because I am afraid that he will be treated different or that people may be afraid of him, but to my surprise, those that know have been nothing but supportive and caring, people are more compassionate and understanding than in the past.

I, like you, went to a phase of anger and even denial (that still lingers) but I am happy and thankful for my son medication that has fully control his seizures. He has been on remission for precious 9 months now. There are new therapies, devices, even surgery. Having epilepsy is not having a death sentence, and there are FAR worse things out there. If you see things on that light, you will feel much better.

See, when I take my son to the pediatric neurologist, I have to wait in the waiting room and see all of this poor families tending to wheel chair bound children that will never talk, play or have friends. I thank sweet Jesus for my problems and thank my lucky starts for my sounds cards. Yes, epilepsy sucks, no doubt, but you have a supportive husband and medical care, things to be grateful for. Many people here are alone and cannot afford insurance or medicine. So all things considered, you are lucky :) also you got 28 years seizure free! A lot of folks here have had it since birth, so more to smile about.

Please know that I am not trying to minimize your feelings, i am simply trying to point out all of the wonderful blessings. It will take sometime to be able to find the correct dosage and treatment, so please talk to your physician or neuro about increasing, switching or adding medications so you can have better seizure control.

Last, I wanted to add that these feelings will subside and that you will come to terms with this. I know I did. My son was scared about his diagnosis and I told him that there is nothing to be fear but fear itself. It has brough us closer too. I will tell you what I told him:follow your dreams and carry on. Do not let this stop you.

Best wishes!

Re: Newly diagnosed

You tagged it merelo.

I have to say that in some peoples posts I may seem like I am comming from another angle but I try to show them that if they have dreams follow them they may have to take another road to get there but dreams and success is highly possiable.

Joe

Re: Newly diagnosed

Thank you merelo. I greatly appreciate you taking the time to respond. I count my lucky stars every day that I don't have anything more serious and that I have a very loving and supportive husband. Which makes me even more angry with myself as I know I have so many things to be grateful for. I just can't help feeling like I want to take my brain out, throw it away and replace it with a better one. I honestly didn't think I'd feel like this when I first had my diagnosis confirmed as it had been suspected for a while prior. I live in the UK so I'm very lucky that I have the NHS available for me to take advantage of, otherwise there would be no way I could have afforded the EEG, MRI and meds, so again a huge thing to be thankful for.
I understand what epilepsy is and what type I have but I'm still searching for answers and explanations. I'm not sure what I'm hoping to find or even if I will find anything, I just feel like I need more answers.
I have another appointment with my neuro, but not until January so I'm hoping she would be able to give me some more info then.
Thank you again for every one who replies as sometimes it just helps to have someone to talk to.

Andrea

Re: Newly diagnosed

Write your question wn or your neuro to make the best out of your visit. Do not be afraid to ask, it is thir job. You don't like the medication, tell them. You want an MRI, ask for it! You want to know how this will affect your family plans, ask!

This site is a wealth f information. I come here for answers, inspiration and to find other people with similar concerns. I ve been very lucky and have found other other parents to communicate with and share tips, updates etc. people here are very cool.

Last, you are the same person as before the diagnosis! Dream on

Re: Newly diagnosed

You are 28 which is great. You have been diagnosed with absence seizures. Which is also better than other types of seizures.

As for epilepsy. It has a stigma and it has been around for many years.

You posted Newly Diagnosed but you did not say how long ago. If it was withing the last few weeks your body is still adjusting to the medication. Understand that medications will need to be increased or decreased or coupled with another medication before they can get you where the medications control your seizures.

You are not the only person that says "why me" I asked that many times. One of those times I got an answer "Why not you".

If you truely look at what epilepsy is it is a handicap which can not be seen. Go to one of the biggest intersections in major cities and look at everybody crossing the street. You will see hndreds some with canes others in wheel chairs some wearing glasses others with hearing aids all of those are also handicaps. Those can be seen. In that same number of people there were also many people who have handicaps which can not be seen epilepsy is one of those. Diabeties is another and don't forget heart disease or cancer. I know that many of those also asked "Why Me" We all have things we are to deal with in our life and we were never promised the road we take will be smoth sailing. The roads have bumps and the sea has waves.

There are people here that will listen to you and try and help you deal with your issues. We look at your post and think back to what we said or did or medications we have taken and any other issue that we had trouble dealing with. At times I say what has happened to me during my life and dealing with epilepsy. You see there are many people who have epilepsy who have their seizures controlled. There are others who are seizure free. My cousin is one. She had seizures when she was a teen. I am not sure for how long but right now she is married drives and is happy doing what she wanted. She also finished schooling and is a PTA (physical hterop[otist associate).

As for it not being spotted it could be difficult for some to spot. I know as they say Been There Done That. I have Pettie Mal, Grande Mal and focal motor epilepsy. There are many types of seizures that will land in those and absence seizure is one of them. Back when I was in 6th grade I was being written up almost weekly for day dreaming. Yet I was one of the top 5 people in class when it came to pop quizes or tests. I can say many of those day dreams to the teacher could and probably were absence seizures. 

Be glad that doctors have specialized and in their specializing it made drug companies speacialize with the mediactions they are making. Now medications are dealing with types of seizures rather ten claming down the entire nervious system they hit certain areas which means you are not all druged up an walking around like a zobie.

I was in denial but I also wanted to prove to people that I could do anything other people could do and I set the bar up higher for me than I did my brother or friends. In other words I made myself work harder to prove someone with epilepsy could do what other people could do.

I would suggest you go to the top of this page and go to the diary watch the video and use the diary. If you do it can help your doctor because the added information could help him with different procedures medications or the coupling of another medication. One of the first questions your neuro will ask is "How many seizures have you had" Well the diary will have that. You can also give your doctor permission to bring it up to view the graphs and other things it has.

My neuro added vimpat to my keppra and I used it and still may since we increased the dosage.

The medications that are being used not only reduce the number of seizures but they also reduce the time in the seizure and the time it takes to get back to normal.

I hope you get answers to your questions and understand that many of us have had many of the same questions and many more. Do come back and tell us whats happening and how you are doing dealing and living with epilepsy.

 Joe

Re: Newly diagnosed

Thank you for your reply Joe.
Good question " Why not me " and I honestly couldn't answer that.
I was diagnosed a month ago and put on lamotrigine as my husband and I were planning on starting a family in the next few years and was told by my neuro that this was the best one to be on. Which is another concern of mine and something we may have to give more thought on now.

Re: Newly diagnosed

So a month ago you were diagonsed and the doc pt you on lamotrigine. You are probably going to see him again in a few months. He will be asking questions and one of the first will probably be "How many seizures did you have" He will want to know if you have felt any differences. Any side effects? What he is doing with his questioning is looking to see if the dosage he has you on will do the job of controlling your seizures. The more information he recieves the better he will be to find procedures and dosages or medications that can get you seizure free.

As for medications. Drug compannies are creating newer medications which treat typse of seizures rather then drugging the entire nervious ststem down. By all means tell your neuro what plans are especially when wanting a family. He will generally set you up with meds that will not enterfer with development. I think I suggested using the diary because the information in the diary will help the doc

What ever you do stay in touch with your neuro and if you have a good relationship he will help you in several other areas. 

I hope this helps and by all means do post how things are going and let us know what is happening. If you have questions ask them. Many people have been around and we had questions or have been around long enough to know what we have seen or done.

Joe

Re: Newly diagnosed

Been there, done that, and fully understand it. This is a great place to vent, and don't feel like you are alone. Another great place to vent is the community on Google+. You can follow it from the homepage here. We would welcome you into our family!