Is anyone else scared they're going to die having a Tonic-Clonic?

[summerf]

I'm sorry about my title. This is my my honest concern. It's my concern in the back of my head every time I wake up and people are staring at me and I figure out that I've had one.

I had one the day after Christmas. I have been struggling with herniated discs in my back either in a ton of horrible pain or having to take strong painkillers like morphine (or both, as the case has been). I've been stressed because I've been missing time from work because I just can't work either in the type of pain I'm in or in the type of mental fog I'm in on the painkillers. I haven't been sleeping well in pain. I'm on Topamax for seizures. I'd been up for 2.5 hours on the day after Christmas trying to get some work done that I was behind on before I went to the office (I carpool with my husband since I had a seizure in October and I'm not supposed to drive). I've never had a seizure after I've been up for about 45 minutes. I was laying on the couch working and kinda fighting dozing off. The place where I fight off sleep is a dangerous place for me seizure wise, and I already know this. It would have been wiser to be sitting at the table working. Anyway, I'd been up for 2.5 hours and I was getting another cup of coffee in the kitchen when BAM. Tonic clonic hit. I guess maybe the Topamax reduced the post-ictal symptoms; I didn't get the classic migraine i always get, and I was able to go to a doctor's appointment for my back (although I have almost no memory of it and it's like I was in an alcoholic blackout or something).

The problem is, that the aftermath of this seizure - as with all the other TC's I've ever had - brought with it a horrible fear that I could've died. What is that anxiety? Is that specific to me and my own anxiety problems apart from having epilepsy? Does that go with the seizure and everyone has it? I'm sitting here crying just thinking about it. I don't know what to about the feeling or who to talk to. I'm afraid that one day, I'm going to have a seizure and not wake up. So far, my husband says that my TCs are about 30 seconds long - not status epilepticus, not even particularly long TCs. I don't know why I'm absolutely petrified. I just AM.

 

[Nakamova]

I'm so sorry that you're struggling with anxiety along with everything else on your plate. For me, fear of dying hasn't been an issue (I've had about 20 tonic-clonics). I could be in denial of course, but that particularly worry hasn't been on my radar. I do think it's normal to feel some degree of anxiety, and it may also be the case that your anxiety is related to where in the brain your seizures originate, and/or side effects from your meds. Either way, you might want to talk to a counselor or therapist to get some perspective and ideas for how to put the anxiety aside.

 

[jyearta]

I hope you get to feeling better IN VERY WAY.

I have anxiety and fear, however my fear is that I will have another seizures or the feeling like a seizure is going to come on. This fear just about stops in my tracts, I on Clonazepam for seizures and it is suppose to help with anxiety also.
I have had to add Prozac (compounded) a few months ago. I tryed fighting these feelings myself, not wanting to add one more meds. to what I already take, but I had to give in and add it.
I had to think which could I LIVE my LIFE with.

You are going thru so much more than me.

I glad your husband is there for you.

 

[Fedup]

summerf

I am sorry you are having a hard time of it and these are real concerns for you, I thought along much the same lines at one time but it was the side effect of the medication. I agree with what Nakamova and jyearta said, it would be a good idea to tell your doctor about these worries.

 

[summerf]

Thank you all for replying. It helps to just know there are others that have had TCs and know how bizarre they are. I added the Topamax in the hopes that I'd never have another one, and I'm discouraged that I had another one less than two months later. It IS encouraging that almost all the noctural seizure stuff I was experiencing is gone, so the meds are helping and it's not all for nothing. I need to get myself together and remind myself that this is a process - the fact that it's better than it was is AWESOME. The fact that I found this forum is AWESOME. I have a neuro appointment on the 17th, and I'll mention my severe fear/anxiety following a seizure. Usually it's a full on panic attack, once requiring a shot of Ativan.

 

[Fedup]

summerf

It's not easy to get yourself together but you have got to try. Remember you are the important one here and you cannot let this rule your life. Everybody here has there own story and all are different in some way. I must agree this forum is AWESOME and the people on it this now includes you. Welcome aboard so to speak.

 

[jyearta]

You are headed in the right direction. You joined this forum and asking questions so as get the help you are needing.

Keep asking questions, here at CWE or your Neur. , don't stop until you find what is needed for YOU.


---HUGS----

 

[Shona]

Hi Summerf

I'm sorry to hear that you feel that way, I think you may be suffering anxiety and the best way to cope with that is being on forums and doing research. I have grand mal seizures and have had some scary encounters, I am 38 and finally getting to know what my body likes and doesnt like and that is chemicals, MSG and preservatives in food (I am fine with alcohol).

From my experiences and my own trial and errors and I am saying this to everyone. What foods are you eating. Ensure they are on a preservative free diet, read all the labels of your food, even things like turkey & beef (which causes me to have seizures) due to preservatives and colourings in it.

You may think that you are eating healthy but the fine print must be read on all labels and understand it, even some natural yoghurts are bad for you.

Try a strict preservative free diet for a month and see what happens. Keep a seizure and food diary, drink plenty of water.

I worked out on my own that Lamictal was causing me to have seizures as it has sacchrin in it and sacchrin causes seizures even in people who doent have a history of epilepsy. Avoid anything that says "diet" or "fat free" or "no sugar" avoid MSG and MSG related produces including "spices" "yeast extract".

Do research on foods and preservatives you might be shocked. Spead the word and tell your friends, if enough people stop eating preservatives then the government will ban them. I am in Australia and our government is NOT strict on labeling.

As for the anxiety, plenty of exercise, drink lots of water, make sure you dont overheat when exercising as this can cause seizures, if you feel you are over heating have asprin this brings the temperature down. I have been diagnosed with epilepsy 30 years ago and have learnt alot over the years and still learning about foods and what is good and what is not. Google: foods help anxiety and see if that helps.

Topamax gave me lots of side effects incl. dizzyness, memory loss, loss of vision at the end of the day and pins and needles in feet and hands.

Your anxiety is just a fear, you can overcome that easily buy knowledge and understanding your condition. Goodluck, I hope I helped you some

 

[Shona]

On a positive note:

Always remember, there is someone to talk to (forums & friends) and there is always someone worse off.

My family is NOT supportive at all and never have been, always treated me as the different child but there was not any knowledge and education 30 years ago.

I know one thing..... I would rather have epilepsy than diabetes or asthma. And if I get down.... I eat chocolate! That also helps with anxiety.

 

[Cint]

Honestly, I've had quite a few TC seizures, some while alone, since my ex was pilot. I have TLE stemming from the hippocampus and that can bring on emotions. Also some of the medications can do the same. I had my 1st TC on my way out of the shower, suffering 2nd and 3rd degree burns. So yes, I could have died if left there a bit longer. And then there was another time my dr. changed my med too quickly and I went status while my kids were young and my husband was out on a trip. If not for a neighbor who called 911, I may not have made it. And several other times when I've had TC's and others thought I was dying. And several weeks ago, I really could have died because I totaled my car because of a seizure while driving. Thank god no one else was injured. Just my car. But the ER dr. said it's a wonder I wasn't injured seriously.
Now I live alone, anything could happen and my attitude is "let it be."

I know one thing..... I would rather have epilepsy than diabetes or asthma. And if I get down.... I eat chocolate! That also helps with anxiety.

You are very fortunate to have only E. I have Type 1 diabetes also, so do have to watch my diet. Eating chocolate isn't the answer.

 

[summerf]

Maybe there's something to the origin of the seizure thing. I generally have the panic attack before I'm even aware what happened. I don't remember the panic attack afterwards unless it's still going on when I really regain consciousness. Sometimes my husband thinks I'm conscious because my eyes are open and I appear so, but my actions aren't imprinting on my memory yet and I don't remember later. That's where the panic attacks usually happen. I know we mentioned this to the neuro last time we went, but I'll be sure and mention it again.

Thanks to everyone ... mostly it just helps to know that other people have these too.