coping with diagnosis at age of 22

[charmschool]

Here's my story (wondering if anyone can relate):

I was having problems with nausea and vomiting for a year and horrible headaches. I had always had episodes of fainting throughout my life but they never discovered why. Doctors also claimed that I experienced panic attacks, but I knew that they were much more because I would pass out. Doctors claimed that they couldn't find anything wrong and I took a leave of absence from university.

I started having seizures when I was alone and my mom didn't believe me- I could come to and find I had knocked things over, and was extremely confused. I had just assumed it was fainting again. They kept happening and finally my mother witnessed one (she used to be a nurse so she understood and knew immediately what was going on). I finally saw a neurologist (this one was horrible and wasn't well versed in epilepsy so I was put on the wrong meds and kept having seizures). Changed neurologists, had a proper EEG and was diagnosed with primary generalized epilepsy with tonic-clonic episodes.

After dealing with these episodes for a year, the only "side effects" I see in everyday life is a tremor in my hands, looking like I have the "chills" and shake occasionally, and now speak with a slight stutter.

I'm living on my own and just started back at school (a new school unfortunately). I'm only 22 (about to turn 23) and have started having them in public (luckily my mom has been with me when these have happened). When I do have them, I thrash a lot, bite my tongue, and the worst part, am always incontinent (luckily I'm not incontinent outside of when I have seizures), and have short term memory loss for about 45 min. I want to get my life back on track but am almost scared to go out in public after a year of dealing with this. My mom has to drive me everywhere but luckily I'm within walking distance to my new school.

I'm currently on Lamictal 800mg, Keppra 1000mg, and Ativan for after my episodes.

I'm wondering if anyone has advice for me, concerning meds, what to do when they happen in public, and if they also have incontinence and what they do for that when they have seizures in public.

I'm so glad to find support on here because I feel like no one knows what I'm going through, especially people my own age.

 

[KaySara]

What a miserable lifestyle for now but it will get back on track. And you have your mom nearby to help when necessary.
I was 45 and having tension, a tight band around my forehead, when reading. I would stop reading and relax and it would go. One day I wondered 'what would happen if I didnt stop reading?' Next thing I awoke on the floor and my daughter had rang the ambulance! I was being ushered into it and taken to hospital. I had an EEG exam and MRI. My daughter said I'd had a grand mal, she didnt know at the time what it was, she though I was possessed by a devil!! I was devastated at my age, not to be allowd drive, not to drink, to lose alot of my independence. My next door neighbour was very ill with cancer and I realised this but I was also very sorry for myself..... Now, nearly 20 years later I still have fits, at the present time they are during the night when I am asleep, I sometimes wet the bed, not always, and I know I've had a fit because I am so tired next day and have no appetite or my husband will have felt me shake. It is not a pleasant illness but no illness is. We just have to learn to cope. What I want to know now is are there any natural supplements, vitamins I should be taking which might help relieve the effects of the seizures??

I go out in public alone always, I travel abroad by plane alone. I must do as my family live abroad and I wish to visit with them. I live with my husband, he drives me around town, or my daughter or son who live nearby does. I do miss my car.......

No, I am not your age, I wasn't even near your age when the illness came on me but I do suffer the ill effects.

 

[charmschool]

Thank you so much- no, you are not my age but you know what I'm going through. I too have family abroad overseas and I want to visit them desperately! I'm with you- I miss my car so much. That equals freedom to me since I'm in a city with hardly any safe public transportation. Not being able to drink is sometimes amusing to me because when I go out with friends I'm the one that remembers everything that happens and can tell them stories but I do miss an occasional glass of good wine.

We do what we can to cope and that's all we can do for now.

 

[KaySara]

Good to hear that. My husband and I moved to Australia just oveer 3yrs ago to join 2 of our children and all our g'children to a city, I am afraid to walk to the town with all the busy traffic flowing everywhere. I feel a burden to them but they assure me I am not. We emigrated from Ireland. Remainder of my family and friends are still living there....I have visited them a few months ago and hope to do so next summer, their summer. I wish for my illness to be controlled with medication, what else! I am assured by my docs that one gls of wine is not harmful but I am reluctant to try it.

 

[mrsbobo]

Hi charmschool,
I have two types of epilepsy generalised like you and another . Have has it since i was a kid. I was put on many medications through the years . It is nothing to be embarrassed about I used to feel that way too but as i got older I understood that it was nothing to be ashamed of it was out of my control. I had seizures at work , in the middle of a busy street , and had falls and breaks to parts of my body. Just listen to your GP and write a diary of everything you feel when taking the medication, also note your weight make sure you take that regularly too and your blood sugar levels.

 

[QueenieKP]

As I have said before of people can't see someone be incontinent and feel compassion for how embarrassed and upset that individual might feel ...

SHAME ON THEM!

I am a little housebound at the moment as I am on a lot of sedating meds.

But generally (I'm 38) I travel about locally by bus (thought I let people know where I am going and how long I will be gone for).

I was diagnosed at 17 dropped out of school, lived like a hermit. Had a baby at 18 became even more hermit like beacuase I was worried about the baby getting harmed. All my peers had done their a levels and were off to UNI and I felt a complete failure.

But while I was a hermit I took my a levels (took me 3 attempts because we kept moving).

I did my degree part time (took 8 years because sometimes real life stuff interfered).

I gave up the hermit life style because where ever I had a seizure I was likely to hurt myself I just took some reasonable precautions like we're a medic alert, going out with someone early on, I have always been 'out' about my epilepsy and made sure people knew what to do.

It's hard now but you will develop your coping mechanism.

Best of luck.

Q

 

[Cint]

I go out in public alone always, I travel abroad by plane alone. I must do as my family live abroad and I wish to visit with them. I live with my husband, he drives me around town, or my daughter or son who live nearby does. I do miss my car.......

I go out in public alone, I now live alone and travel alone, too. I was first diagnosed at 22 years of age, some 30+ years ago. At the time, I was in the travel industry and had planned to travel and see the world. I was also married to a pilot. He was the one who was able to travel and see the world and I lived 1500 miles from family. No one except neighbors and friends available to drive my kids or I around when my husband was out on trips. My kids grew up with it and learned to deal with a mom who has E.

 

[charmschool]

Thank you so much for everyone's support and sharing their stories- it means the world to me!

I'm trying to at least have a sense of humor about all of this. For example, my pill box is huge (4 rows, 7 days a week) and I call it my personal advent calendar- there's a prize 4 times a day! I also want to add sequins to it haha

I'm now in my 5th year of college but hoping to graduate soon. I have to speak to all of my professors and let them know my situation in case I seize during class. Several of my professors didn't know what epilepsy is! (really wishing I was back with my friends at my old university who love me no matter what- they've been really supportive through this whole process)

Let me backtrack a little bit- I was in school in DC where when I had a seizure (undiagnosed then) I was walking on the street alone at night, had it, came to and I legitimately had 3 people step over me! I'm now in school in my home state of Tennessee where while they would help me if they saw me having a seizure, they wouldn't really know what is going on.

Do you tell new people you meet that you have epilepsy in case you are with them when you have an episode?

 

[QueenieKP]

Personal advent...that is awesome!

Deffo add sequins and maybe a surprise skittle!

Q

 

[QueenieKP]

Ps add sequins to OUTSIDE of pill box is attractive decoupage way NOT inisde. Consumption of sequins is PROPABLY HAZARDOUS to health.

This is a public safety announcement bought to you by Queenie

Xxxx

 

[Lbueno]

Do you tell new people you meet that you have epilepsy in case you are with them when you have an episode?

For me, I guess I would say it depends. I'm not even sure what it depends on, so that sounds stupid (from me). I'm 23 and mine started when I was 17. Not being able to drive, for me, is the hardest part of dealing with this. I feel like I don't have a life because it is so hard to get around and go places to meet new people and such. I don't have full grand mal seizures, though. With my seizures, they last about 20-30 seconds (on average, but can be longer) and I know what's going on. So, I usually just wait until it's over and then just go on with my day. I can't imagine how I would feel if I were having full seizures in public. I would be scared as well to go out. As for your comment about drinking - my neuro told me, basically, a drink here and there is OK, but don't overdo it. Of course, it's different for everyone, though. I can certainly relate, though. I left college for a while as well. I just started back last semester - only one class, though. But, I guess it's a start :/ Hope you're doing well, Charm

 

[notime]

Hey,

I am sorry for the trouble you are going through, but we can sort of relate. I am 22 years old, and I have primary generalized seizures and I assume they're tonic seizures without the shaking, but nobody has ever witnessed it. I rarely get out to do anything, but mine usually happens when I wake up and so forth. My advice to you is to ask you neurologist to refer you to a neurologist with additional training in epilepsy (epileptologist) which is more specialized in the treatment of epilepsy and perhaps will be able to help you better. They may also have an epilepsy center in your area, have you checked it out? Perhaps a referral there would be good too.

I have never had a seizure out in public, but I can understand how embarrassing it can be. I tried taking Keppra XR (generic + 3000mg daily) which failed to control my seizures at full dose then my neurologist added an additional medicine Lamictal and I am at 100mg. So far, my seizures got a little worse and went from few months to one month. I haven't had a seizure in a month, either the medicine is working or it's close to happening again which I hope not.

You may find this helpful, try ordering a medical bracelet online which says you suffer from epilepsy. So, the paramedics doesn't take you to the hospital unless there is an injury or something. Have you thought about talking to a therapist? Depression is harsh, but I couldn't get transportation there or afford it so I do without. If you do see an epileptologist, then he may consider prescribing depakote which is an older medicine. The side effects suck, but my neurologist assumes it would control mine if these medicines failed. Have you had that medicine before? I am waiting to lose weight, since it has weight gain as a side effect.

I hope this helps you though, that's about all I can say.

 

[KaySara]

Went to bed this afternoon for a nap and woke knowing I'd had a fit due to state of bed... I am now feeling quite ill so will get back on line in a day or so when I feel better and offer positive advice.

 

[Juju26]

Life doesn't always go as planned.

I changed majors, so I was 27 when I supposed to graduate in May of this year, but the loss of independence is still the same.

Six months ago I had a car, money in the bank, a college internship and was looking for a job....now all of those things are gone and I'm still not back in school, I had two unconscious seizures in September, that brings my total to 13.

But don't let your losses stop you from gaining, I still take public transportation to get where I need to go and plan on going back to school in January. My mother doesn't want me to, but I can't let having epilepsy stop me, even it means taking the bus to school and having a seizure in public....

Don't let epilepsy keep you from achieving in life.

 

[mrsbobo]

At first we are all embarrassed especially when we experience incontinence after a seizure but there is no need to worry its a part of life and many people have epilepsy and we shouldn't be ashamed of it. Take your medication the way your neurologist tells you, if you think that you are having side effects from any of this medication tell you doctor because I was having falls on the lamictal and it just so happens that there was an ingredient in there that didn't quite agree with my epilepsy and it caused me to get dizzy and fall to the ground. Keppra makes you depressed but the minute you see that do something you enjoy that way it will make you forget. I get the slurred speach even if I am feeling fine but its all part of epilepsy. Don't be afraid to go out tell your friends and family about your epilepsy where a wrist band with your condition written on it if you are alone and someone sees you they know what to say when the call the Paramedics . I have suffered many seizures in public and incontinence yes I was embarrassed but it was out of my control and lucky I was out of it. But I suffered a lot of stares a few days later when I returned to work but I put those people in their place . But go out enjoy your life don't let epilepsy stop you. If you take your meds you'll be fine and if you don't feel well one day sit down don't continue what your doing because thats what i use to do and i broke my feet, injured my back and much more. Also get a good nights sleep you need to sleep well when you have epilepsy . And most of all but hard to do stay stress free because no matter what the doctors say STRESS plays a big part .

 

[KaySara]

Thank you all for your useful posts. I am heading on holidays tomorrow and I still have packing to do.... I had a slight fit during the night which has taken all my energy and am leaving all preparation until early tomorrow morning!! We dont leave until noontime so I hope to have it all done by then...no energy or appetite today...what a nuisance but the husband is a great asssistance so all will be prepared and once credit card and ticket is in my pocket I will cope........Thanks once again for all your positive posts...

 

[KaySara]

I am lucky in just urinating in public and always carrying a bottle of water which I exclaim...'Oh I've spilt my water!!' when I've come to, ha haha....but usualy it occurs during the night when asleep so now I wear a nappy....and it doesnt occur all the time, in fact rarely but it is a nuisance...its the loss of energy, the feeling of illness and of course loss of driving licence which is a great disadvantage but we must get on with life and when the fits havnt occurred we are feeling grand, arn't we??
So lets hope I enjoy this holiday which is a cruise from Sydney to NewZealand, and I shall report all when I return........xx

 

[EC77]

I had my first seizure at 18 just before I was due to start university. It really knocked my confidence, I didn't want to leave the house or be around strangers for the fear of having one. I found being open and upfront with friends & people I met meant I never felt uncomfortable. I was 23 when I was put on meds & my driving licence was taken away, I had just started work as a primary school teacher, bought my first house with my boyfriend & wanting to look forward to my life. You are lucky your mum was supportive, I felt mine (who is also medically trained) felt embarrassed & that I shouldn't talk about it. I have a pendant alarm in the house that is linked to a 24/7 call centre. When I'm out I wear a medi bracelet. The main thing is don't feel embarrassed, be honest & educate people around you & you will find it easier to go out and continue living your life. I only joined here yesterday, it's a big thing to be able to hear people going through similar things, I hope it helps. Good luck.