Hi everyone - what happens to my boyfriend is that he has seizures that seem to start as partial and then they always end up in a grand mal. He doesn't have seizures very often (4 total episodes since he was diagnozed a year and a half ago), but when he does they are really bad. His last seizure in my dorm room was like this - he said he felt weird, then he sort of slipped away into a staring session but it lasted literally two hours - then he vomited and said he felt better and i thought he was fine but then he went out of it again and had a very violent grand mal - I called 911 and he had 2 more grand mals in the ambulance. He basically was having some kind of seizure for about 4 hours straight and he remembered hardly any of it afterwards - I've done research on epilepsy and this seems rare, like most people just have seizures for a few minutes then its done with, and I wonder why he has such bad seizures- another note - he sounded like he was really struggling to breathe - he was making these horrible gasping noises - the nurse was trying to get a tube up his nose and she was like "DO IT NOW!!!" It freaked me out and depressed the hell out of me.
I have really bad anxiety about this. It's hard cause I don't want to make him anxious or stressed cause I know that can be a cause of it! So I'm left just kind of ruminating about it in my own head. I'm worried that if I'm not with him he could die from seizing for so long and that he will stop breathing or his heart will give out. Does anyone have any suggestions about how I can deal with this anxiety and constant worry that something really bad is going to happen, or also anything physical that he can do to prevent seizures so this will stop happening? He is on Keppra now and he doesn't drink or take drugs. It's just so hard wanting control over this and not being able to, and I'm not even the one with epilepsy! I'd love to hear you guys' thoughts about this.
I am so sorry he had such a long cluster of seizures. When you have them longer than 30 minutes of clusters like that it is status epilepticus. It is not as common as those that last a few minutes and it is a medical emergency.
Did he see his neurologist after this last bunch of seizures? There are meds to use for this kind of thing, Diastat is a recal gel that can often stop prolonged seizures or clusters. Ativan is another or oral valium (Diastat is a valium).....Sounds like he needs to ask for emergency meds. Taken when he first got that weird sensation might have helped him.
It is so hard to watch someone you love go through this. Educating yourself is so important. Keep doing those searches and learn all you can. He is lucky you were there!
mom of 2 teens who have battled seiuzres.
Thanks so much for your reply, Kayakmom! He did go see a neurologist at John's Hopkins after this episode, but the doctor doesn't seem to really address the real dangers involved with epilepsy, he just kinda says all the same stuff you would read at any generic website about it. My boyfriend did have a bottle of valium that he is supposed to take when he feels the onset symptoms - he took two doses of it and this still happened, but we figured out later what we gave him wasn't enough for someone his age and size. I guess there is nothing really more I can know, when it comes down to it, this is something out of my control, and that is the hard part. Epilepsy is such a tough disease for everyone it affects!
Sorry the neuro was not much help. If he is not listening and working with your boyfriend he can try a second opinion. Glad that you found he needed more ativan...be careful if he needs it often, it loses affectiveness if over used!
mom of 2 teens who have battled seiuzres.
I know exactly what you're going through. My boyfriend, now ex had the same kind of experience with multiple grand mal seizures one after the other. He is presently on 500mg of Dilantin, and his body seems to metabolizing the med fast. With this high dosage he became irritable, angry, confused with speech and completely changed as a person. The neurologist has no answer for him regarding this. At age 29 he was diagnosed with Epilepsy out of the blue with no explanation why... With all of the action going on, he ended our 7 year relationship like there was no tomorrow, and ran into the arms of a stranger who he felt understood him the best. She did not persist on medication, nor did she nag him about anything and he liked that....After 5 months with this girl his relationship ended... I actually need advice. What am I going to do if he wants to get back together? He has already began to apologize to me for being a jerk and that he understands that he's made a mistake that he can never ever go back and change. The hurtful and painful things that this man has said and put me through was incredible. He never used to be like that with me. He hasn't asked me to get back together with him, because I know he is so embarrassed to, but he constantly drops little hints. What am I going to do if he does???
Good luck with yours and let him know that you love him, but try not to nag too much. They have a lot to deal with and any extra sometimes makes makes it worse even if you mean well.
That's interesting, my boyfriend's personality has also changed a lot lately because he is on Keppra and it makes him very angry. He also talks to me in ways that he never used to before he was on this medication. It's painful, but I try to understand it from his perspective, even though it's hard sometimes. I'm sorry you had to go through him having grand mals together, it's a terrible thing to watch and really frightening. As for getting back together, I think that if you truly love this man and can forgive him sincerely then it's worth a shot. As for me, I try to stay away from guys that hurt me and then want me back, cause I think if they do it once they might do it again, it just seems to be a pattern in people. Of course, he sort of had extenuating circumstances ,but I'm not so sure that condones it. If you have doubts or aren't sure of how you feel about him, definitely don't pursue it unless you really love this guy. That's the advice I'd give whether he had epilepsy or not.
I totally understand about the whole nagging thing. I got epilepsy when I was 17 and because everyone was worried about me I lost a lot of freedom. But although it drives me crazy sometimes I completely understand, and I know it's because the people who nag me care about me. I sometimes think epilepsy is worse for the people who care about me than it is for me, because of the stress involved and the trauma of seeing the seizures and worrying about my side effects. Worrying about my epilepsy gave my Mum panic attacks this year, so you have to be careful not to stress out. She ended up in ER. It think she's an extreme case though. Although it's annoying sometimes it's nice to know they care so much. But what I will say is that if your boyfriend is experiencing major mood swings etc with the drugs he's on, it's vital you consider a change of drug. A good quality of life is what we're all trying to achieve here, and there are loads of drugs out there.
that's very interesting - I also have been having panic attacks about his seizures. They're better now cause I weened off caffeine which apparently was a big trigger. But I kind of got obsessed with researching epilepsy, and I learned all this stuff about SUDEP which I convinced myself was going to happen to him though logically it isn't very likely. I just realized that worrying about it isn't going to change what happens - all I can do is be as prepared as possible for when and if it does happen, but when it comes down to it, it's his life. I do nag sometimes, but that is because he has a horrible memory and doesn't take as good care of himself as he should, so he deserves it
Oh My God Your The First Person Ive Heard Talk About Quality Of Life.i'm A 36 Yr Old Single Mum Of 3.ive Had Peti-mal Fits Since I Was 6yrs Old.then I Had My First Son At The Age Of 21.
When He Was 12wks Old Had My First Gran-mal Seizure.(my World Fell Apart) But Because I Already Had Peti-mal Seizures Everyone Expected Me To Just Get On With It.
In Fact I Had Lost All My Self Confidence,i Didn't Even Want To Bath My Son,i Was Frightened I Would Hurt Him.i Then Had Another Fit A Fortnight Later.i Carried On Having My Peti-mal Fits Daily,but Had No More Gran-mal Seizures ...for 12yrs.
Then I Had 5 In One Day.all I Rem Is Saying To My Friend That I Thought I Had A Very Bad Migraine Coming On As I Had The Sensation That I Could See Lightning Flashes Shooting Accrss My Brain.(it Was As If I Could See Inside My Own Skull)very Weird.i Then Went Home To Bed Got Up The Next Morning Had A Bath And My First Of 5 Very Big Gran-mal Seizures Started.
I Dont Rem Even Leaving My Friends House Which Was A Good 12 Hours Before My First Fit,and I Woke Up In The Middle Of The Night In Hospital A Day And A Half Later Unable To Move Which Such Bad Backache,but For Some Reason I Lay There Felt The Cathater That Had Been Inserted While I Was Unconsious And Came Up With The Idea That The Reason I Was In There Must Have Been That I Had A Kidney Infection????it Never Crossed My Mind That I Didn't Know How I Got There...i Was Very Confused And Had Bitten A Large Bit Out Of My Tounge And Couldnt Speak Properly.i New People But Had Trouble Rem Some Of There Names,anyway The Next Day This Dr Comes Around Talking To His Juniors About My Gran-mal Seizures And Im Thinking To My Self "what On Earth Is He Talking About?" ((no One Had Even Told Me Why I Was In There))
Totaly Teriffied I Wanted To Sign Myself Out.which I Eventually Did.looking Back I Was In No Fit State To Make Any Discisions,but I Went Home To Face The Damage That Had Been Done To My Body While In The Fits.i Had Damaged My Discs In My Back,bitten Off A Large Peace Of My Tounge,hurt My Knee(it Would Give Way Every Now And Again Afterwards)and Worst Of All Patches Of My Memory Seemed To Have Just Vanished.people Were So Good They Tried To Remind Me Of Diff Things I Did But It Was Like They Spoke About Someone Else.i Didnt Have A Clue.
I Have As Of Today On A Normal Day ((about 80 Peti-mal Seizures A Day.on A Bad Day I Have A Peti-mal Seizure About Every 40 Sec.))i Have Had Every Anti-convulsant You Can Think Of Plus The Vns(which Is Now Turned Off)as That Didnt Work Either.
I Am Looking For Any Info On Diff Epilepsy Treatments That Are Unusual.i Am Currently A Bit Of A Guinnea Pig In The United Kingdom.i Am On A Perscribed Drug Which Is A Stimulant.i Don't Have Seizure Control But I Do Have A Normal Quality Of Life...now.i Have Normal Conversations Now Can Go Shopping On My Own,take My Children To School So Therefore Am Pretty Much Like Any Other Mum Of 3.
Im Looking For Anyone Else Who Is Using Stimulants Legaly Or Ileagaly To Control Or Have Found A Reduction In There Seizures By Using The Stimulants.aparently My Last Eeg Is Frightening.i Have Nothing Left In The Uk To Try,please If Anyone Can Give Me Some Sort Of Light Please.
As I Have No Options Left And Im Very Worried What My Future Holds For Me....
WOW SORRY GOT A BIT CARRIED AWAY...