Hello I think I may be epileptic

[Rita68]

Hi there,
I'm a single mother of a 2 year old boy and I think I have epilepsy and I'm scared.

For years I have been having these weird dejavu flashbacks and haven't known what they were. They have lasted only for a few seconds to a minute in the past and I have these awful feeling of dread come over me when they occur but they haven't hurt me or anyone so I learnt to live with them.

Two months ago I woke up with a mouth full of blood. I had bitten my tongue. Then last Sunday I woke up again with a mouth full of blood and a very badly bitten tongue. I work from home and managed to do an hour or work until things went really pear-shaped.

This intense feeling of tiredness came over me and I had to go back to bed. My son had woken up and I think I must have lifted him out of his cot because I just recall lying there unable to move and he was crying but I just couldnt get up to tend to him.

Somehow after a while I got us downstairs and then started ringing friends to help me. I finally got onto someone who came straight over. She took me to the emergency department of a hospital where I was crying uncontrollably. The doc said that it seemed like I had or was having a seizure.

I ended up at her house and she looked after my son for the day. My mother and brother drove up (I live four hours from them) and stayed the night and then drove me back to their town. The doc said that I can't drive until they work out what the problem is and I'm booked into a neurosurgeon next week.

It lasted so long. Apparently I was not making sense for ages and was repeating myself all the time. My tongue is so badly bitten too.

My father was an epileptic (he has been dead a long time) and I guess it is very hereditary?

I'm really freaked out by all this. I live in a small ski town and everyone is now talking about me and how I've lost my mind. I have a high profile job and I'm not sure how to handle any of it. I guess I should be up front about it to stop people from gossiping about me. I know it's nothing to be ashamed of but I can't help but feel ashamed. I do feel like I lost my mind. Since then I am having these dejavu episodes a few times a day now.

Being a single mum doesn't help things either. My son needs me. I'm so nervous that maybe I have a brain tumour or something. The doc said that the usual wait is 6 weeks to see a neurosurgeon but I managed to find a cancelation. I can't believe they would expect you to wait six weeks to see someone.

Anyway I'm happy to have found this forum. It should help to meet other people living with this if it turns out that I do have epilepsy which in my heart of hearts I think I have got.

I have a high profile job and I've also started a business with a friend and I shouldn't have becuase I look after my son alone. So yes I've been super stressed lately which apparently is not a good thing for epileptics?

 

[epileric]

Welcome Rita

So sorry to hear about what you're going through. I've had epilepsy all my life so I guess I'm lucky not to have to go through the stress of realizing I have it. Realize that a lot of people here have gone through what you're going through & they are mostly very supportive.

I agree with you that when it comes to keeping things straight it's best to let others know that you've got seizures. There are always those people who associate it with lessened mental capacity (to put it politely) so be prepared to set them straight.

As far as it being hereditary- that can depend on the person & the seizures. Epilepsy has so many different causes that there's no rule.

I am concerned that you're seeing a neurosurgeon right away before trying any other method of treatment. Surgery is like a tattoo in that it's permanent, for some people it works & for others it doesn't. I would highly suggest you become familiar with all the medications & other methods of controlling seizures first. After all, you've made it this far in your life without triggering a seizure, maybe you can figure out what trigger started them & go from there as to how to treat it.

The best way to do that is to keep a calendar of when you have seizures, whether they're deja-vus (partial seizures) or convulsive (tonic/clonic seizures) & as much details about them as possible. Also keep track of your sleep schedule, what you eat & your stress levels. There may be a connection to one of those Meetz (another member here) has a great list of what to keep track of.

Hopefully this link will help you with the basics. http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/ Bernards signature has a link to alternative treatments that may be of assistance to you as well. Any questions about seizures that you may have, feel free to ask anyone here

 

[Rita68]

Thanks Epileric

Thanks so much for your quick response Epileric. It's so nice to find all these people who can relate to the same challenges.

I think I'm booked in to see a neurosurgeon to get an eeg or something. Some sort of brain scan. I'm definitely more for natural therapies and have already decided that I'm going to ease up on my work and get back into yoga etc.

I've been worried about my stress levels for a while...

Also wondering if this condition can affect your general memory - ability to recall. I have a terrible memory and it seems to be getting worse, a lot worse. I've been worrying about this for a while too. I just can't remember stuff. I sometimes feel like I have early onset dementia. Cant' remember people's names etc. I hate it and would love to find ways to improve it.

Do you think memory problems are associated with some epileptic conditions?

 

[epileric]

You're very welcome

You should use the "search" button at the top of the page to search for "yoga" (or anything else for that matter). I know yoga has been discussed here a fair bit.

As far as memory goes, I am pretty sure that excessive seizures do effect ones memory. Another problem is that "bad memory" is also a side-effect of most anti-epileptic drugs (I guess that gives me 2 more excuses lol)

 

[Nakamova]

Hi Rita, welcome to CWE!

When you're first being diagnosed it's a scary time. I developed epilepsy when I was 35, out of nowhere. The unknowns can feel overwhelming, and the fear of stigma is daunting. I agree with what Eric says about being upfront about having a seizure disorder, especially when you have more information about your diagnosis from the doctors. If you are matter-of-fact about epilepsy, it helps put people at ease. Unfortunately, there are a lot of myths out there about epilepsy, so whether you want to to or not, you may need to gently educate folks around you.

Did they do any tests at the ER? Have a you seen a neurologist (rather than a neurosurgeon) yet? That's usually the first step. Even better would be an epileptologist. A neurologist would most likely recommend an MRI and or CT scan, along with an EEG. Surgery is usually way down on the list of treatment options, as Eric says. There are many less invasive ways to treat and cope with a seizure disorder.

This is a great forum for advice, empathy, and support. If you need a laugh or a place to vent, CWE has that too. I hope you feel free to explore the forums and ask questions.

Best,
Nakamova

 

[Nakamova]

Rita, the deja vu epsiodes you are experiencing suggest that your seizures may be originating near the temporal lobe an also the hippocampus -- an area of the brain involved in long-term memory and spatial orientation. Your memory issues could definitely be related to your seizures.

 

[Rita68]

Thanks so much Epileric and Nakamova for your helpful info.

I have wondered for years what these dejavu things are. I remember asking a doctor about this dejavu once and his answer smacked of 'I haven't got a clue'.

It now all makes sense these weird dream like dejavu things that happen and now biting my tongue. When the dejavu hits I grasp badly to get the full image in my head and it is kind of tantalising and is often from school days. But the full image never arrives. I then grasp desperately onto the image and then it disappears as quickly as it appeared and this awful feeling of dread and nausea kick in.

It scares me to think what I did in my sleep to bite my tongue and how that didn't wake me up. I've really damaged my tongue. It hurts to eat and to talk which sucks cause I enjoy eating and I talk on the radio and TV for work! My neck and back really hurt too. What do you think I did?

I live in Australia so I might look for some support groups over here.

I'm booked in to see a neurologist not a neurosurgeon - my mistake. As I was saying I hope it's epilepsy in some ways as this is something that can be managed. A brain tumour a little less so.

I'm finding it to hard not to drive. I drive a lot! And I'm getting very narky.

These sorts of support groups are so valuable. It normalises the whole thing and is making me feel less alone.

How do you find people treat you when you tell them you have epilepsy? I live in a gossipy environment.

 

[Rita68]

PS My stomach and neck muscles are really sore too!

 

[epileric]

I know that feeling of all muscles being sore after a convulsion. I don't often convulse (lucky me) but even during the smaller ones muscles that are involuntary react to seizures. I was at the massage therapists who was working on my back when I had a seizure, she told me that my erector spinae muscles (that connect to the discs) were flexing in rhythm.

As for not waking up when biting your tongue, remember that you weren't asleep. You were in the middle of a convulsion & anyone in the middle of a convulsion will feel, hear, see & remember very little to nothing. Afterwards when all those muscles were done flexing your body & mind were just overtired & had to rest. Nothing to be scared about, your body just did what it needed to do to recover.

As far as how people react, everyone reacts differently. I like to tell people once they know me because then they know other things about me & that makes a dif in how they perceive me. My experiences with bosses & principals (schoolmasters) has been pretty hectic though but not always. Like Nakamova said, treat it casually & people will be more likely to react as though it's casual. I do hate gossip though.

Also, you might want to watch & see if you forget things after a "deja-vu" or any type of seizure or not. I know that my seizures effect my memory. The stronger the seizure the more I'm likely to forget.

 

[Nakamova]

I agree with Eric -- you probably had a convulsion (called a tonic-clonic) in your sleep. Convulsions can be hard on the back, and the tongue as well. I know exactly how you are feeling! As long as you didn't injure yourself seriously, your back and tongue will heal in time. Avoid sleeping on your stomach while your back heals, and consider getting an ultrasound treatment to help with the pain. Soft, non-acidic foods are easier on the tongue (I remember tomato sauce was a no-go for me; hard-boiled eggs were okay).

 

[Rita68]

I'm staying with my mother and she never cooks asian style food. Tonight she cooked me Rogan Josh! Was torture! God love her...

I have another question. Today I've been very short of breath and my heart is racing. Do you ever feel like this a few days after an episode?

 

[Rita68]

I've now stupidly googled too much and I'm now panicking that I have a brain tumour. Oh my god. I am hoping its just epilepsy now and I don't give a crap about what people think anymore!

 

[huskymom]

Welcome Rita!!

The Internet is a wonderful thing, but as you said, it can give you too much information!! My epilepsy didn't hit me until I turned 45 (5 years ago) for no apparent reason. Brains are wonderous things! My seizures almost always occur at night during sleep. I never wake up while having them, but when I do, I feel as though I have been dragged through the streets. Every muscle is sore and then I am unable to focus on anything! Sounds like you have a good support system with your mom, brother and friends. I can only imagine how worried you are about taking care of your son. Once you see your doctor, he/she will most likely start you out on drug therapy. Don't give up hope if the first one doesn't work. Most of us have been through several before the right one, or combination of drugs work. Everyone is different so epilepsy affects everyone differently. Stay upbeat and hold your head high. You don't have leperepsy, just epilepsy!! :hello:

 

[Rita68]

Thanks HuskyMOm. I'm super stressed about all of this. Being the single mother of a two year old. His dad lives overseas and has nothing to do with him. I read that there is less chance of getting epilepsy when you are older and there is more chance of it being a brain tumour and really freaked myself out.

I have had these weird dejavu epispodes for many many years though and my father was epileptic. ANd I have been stressed with no sleep for a couple of years so maybe that brought on more full on seizures?

God I hope it's not a tumour. I'm praying hard.

 

[Nakamova]

Hi Rita --

The heart racing/short of breath could just be from anxiety, stress. You're also probably not sleeping, eating, and/or getting enough water, which can make you short of breath. Go ahead and write it down (along with anything else that seems strange) just in case it happens again. When you see the neurologist it's good to be prepared with written questions, as well as a written record of your history.

Since you have a history of epilepsy in the family, a brain tumor seems to a less-than-likely diagnosis. Seizures can evolve (i.e. from deja vu episodes to actual convulsions) in response to physical, physiological stresses -- like not enough sleep. There is also something called "kindling", where the more seizures you have, the more seizures you are likely to have as the brain "gets used to" seizing, and the neurons get hardwired into firing abnormally. Your lack of sleep could have been what triggered the convulsions, as well as hormonal changes too -- pregnancy often changes the hormonal balance, and an estrogen imbalance can trigger seizures as well.

 

[rangerwvu]

Hi Rita!
Glad you found us here, as you can see there are so many great people with a lot of very valuable information as well as support that can help a lot, or at least I have found that to be the case.....apologies for the long post in advance everyone!

I too was in a high profile position when I began having seizures (even though I had some stuff going on before that which I did not realize were actually 'small' seizures, but that is a whole other story lol). When you are in that type of position, it can be a bit more tricky to navigate the work issue....as if you are in the situation I had, and it sounds like you are, any potential signs of ill health or even gossip re: same can lead to the Board President or Board members questioning making a change and getting someone new just to be on the safe side. Since others here have spoken really well (and much better than I ever could) to your other concerns, I will just mention a couple of things that I did which seemed to help some re work: I ultimatley did share with 2 of the Directors that reported to me that I had been diagnosed with a 'seizure disorder' (like it or not, that wording is much less exciting in some environments so I would strongly suggest using that vs epilepsy at first..) but I also stressed that I was in the process of getting medication to the right level so that it would be well controlled. I tied in the example of someone who had developed Diabetis and having to do the same thing, etc (my nuerologist gave me that idea, thank God!)...I asked them for confidence and support via not discussing with others as well as gave them each some increased duties to help reduce mine for a while...something they gladly agreed to so they could show they could do it, preparation for the future, etc...so that might be an option for you as well. It could help reduce your stress which can be a big seizure trigger if it gets to a certain level. Ultimately, I did have a couple of seizures while at work (because I went straight into denial and did not take proper care of myself!!) and it helped that I was able to tie it into the former diabetis example and how folk sometimes fall ill if they do not take care of themselves...I may have an advantage though, I always had a 'warning' before seizures in the form of sensations I had so I had time to leave meeting rooms, etc...so that others would not witness it or I was lucky to be able to find a private place. I was horrified re: the normal embarassment but really concerned about my employment as well as my career...cant just go to another company when they have already heard about it.

Regardless of all of that, what might be key is just taking some time off from work while you get this ironed out; even though I know that might seem impossible right now with your role at the company, government, etc... but heck, if you have to, tell them you have a family member that is having health issues, anything possible if you are concerned that you might loose your job or it would impact you negatively; assign a designee, hopefully someone you can trust that you can stay in contact with to guide decisions, etc...but they can handle the direct work with your guidance and instruction from afar so to speak... Anyway, you could share some details with others later if you choose to do so once you see where you are with this...meds controlling well, whatever your situation is...that way, when you do share more about E and do gently step into the waters of educating others, they can focus on that vs concern you cannot do the job anymore and having strong reactions to that....unfortunatley, in a higher level management position, like many other professions out there, there is a different standard and normal things that can happen in life can impact your job much differently than others, fair or not. And at the end of the day, if you are having to struggle right now to do the job, you should assign a designee and take some time off no matter what. Sorry if that is harsh, but we both know it is true unfortunatley. And it would be the best thing for you.

Once I was sure everything was as well as it could be, I discussed with key Board members and asked for their support, but felt they needed to know in case they heard anything so they would not react negatively in terms of my employment. That actually went well....they watched me closely for a long while, and I knew they would, but ultimately it was ok. I did take more time off and backed down from the 60 plus hours per week, etc...I know that getting relased from employment due to E is against the law and all of that, but in reality all bets are off when you are in this type of position. Ultimately, I chose to make some changes with employment and took on smaller roles as it was the best for my health (and in reality for the company and my co-workers) and it has worked out well even though it was very hard and I sometimes can have a lot of strong negative emotion around that...hard to work toward something all those years and then give it up.

If you want to discuss in detail or bounce around ideas, or simply yell about the employment piece of all of this, please feel free to send me a message or even ask on here in larger group if you are comfortable. Everyone here can understand all of the fear and frustration! Sorry for the long post, just know this is a very hard issue that compounds everything else you are going through...and hoping anything shared might contain something useful or at least help you feel understood and less alone. Guess it was also my opportunity to vent about it as well as everyone can tell, so thanks for allowing me that selfishness I guess. All the best to you, you are in my thoughts.....
Ranger

 

[huskymom]

Rita,

You need to watch Kindergarten Cop. There is a kid who always thinks he has a major illness and in one scene he says that he thinks he has a brain tumor. Arnold Schwenegger (spelling) says "ITS NOT A TUMOR"!! LOL

 

[skillefer]

Hi Rita!

Welcome to CWE. This is a fantastic site for info, and for venting when needed. The rest have given you some fantastic advice. Now here's my two cents. While you're able to hang out with your folks...chill. Relax. Just spend some time relaxing and playing with your son. Stress is the worst thing for us. Try to make sure that you are eating well. Low blood sugar can trigger seizures, and if you're like many other work aholics you probably forget to eat. So make sure that you're eating up to 6 times a day (small dessert plate sized meals..) and that those meals have protein of some sort in them. (it helps slow down the sugar) Try to do things like yoga, walking, prayer, meditation, etc to deal with stress. Make sure that you get a minimum of 7 hours of sleep a night. (not easy with a two year old...I know.) and keep a log of when you have these deja vu feelings. Jot down what you were doing just prior, where you were, and how long it lasted. (it might offer you a clue as to the why) Lots of different things can trigger seizures. I hope this helped. If you have questions, feel free to ask.

As to how people react....the people I know have handled it really well. I'm a teacher and yes, I've had them in front of the kids at school. But they and the teachers were fantastic.

I take a medication but I also use Magnesium to kind of slow down my brain. There's info here in the archives on it. If you try it, you'll know you are taking too much when you have diarhea. It also softens stools. Let me see....what else...oh yes, your cycle can effect it too. The hormone fluctuations around a womans cycle can trigger seizures too...so you might want to keep track of that. Anyway, hope this helped.

 

[travel bug]

Hi Rita,:hello:

As a brain tumor survivor myself, I wanted to address your fears that you may have a brain tumor.

First of all, the others are right about too much information on the internet and the stress that can cause:agree:, and the fact that epilepsy can start at any age. If your father had epilepsy, that is likely to be the reason you have it. Remember: brain tumors are very rare, epilepsy, even adult onset epilepsy, is not.


Second, if your doctors suspected a brain tumor - at least a high grade tumor like a glioblastoma multiforme which is what most people think of when they think brain tumor – then they most likely would have done an MRI as soon as possible. Since glioblastomas grow very quickly, the doctors probably weren’t worried since you said you’ve had the déjà vu and dread sensation for years.

Third, no brain tumor is anything to laugh at, but the diagnosis of a brain tumor is NOT an automatic death sentence. Not even glioblastoma. Believe me, I’m not kidding myself, I know the statistics, but I also know too many people who’ve been living with a brain tumor for ten, even twenty years to give up hope. I have a low-grade, malignant oligodendroglioma; I had surgery and chemotherapy, and now my doctors are very positive about my prognosis. :tup:

I know it’s easier said than done, but please try not to think the worst. Hang in there and stay strong:rose: And let us know what you find out at the neurologists.

 

[Rita68]

Thanks

Hey Travel bug,
Thanks so much for your input. I do appreciate it. Makes me feel a lot less panicky. You can't help but think the worst case scenario. Being a single mum thrown into the mix makes it a whole lot worse.

I have a very full on life. I run a media company for the ski resorts in Aus and I stupidly started a snow travel business as well and I look after my son all by myself and I'm wondering if the fact that I sleep 3-4 hours a night, work seven days a week and I'm super stressed has caused me to get sick. I wish I could get a brain scan earlier but the usual wait in Australia is six weeks which I find hard to believe. That they could make you wait this long.

Anyway I managed to find a cancelation and get in earlier but it's still an awfully stressful wait.

Things are going to change. I'm going to reduce my workload considerably. I thought I was super woman I think. I guess our bodies can only take this treatement for so long.

Thanks for your lovely feedback. I'm so glad that you are okay x