Anyone need advice or talk? Living with Grand-Mals and A ok still :)

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neilcw1980

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Hi....My name is Neil. I found this site through a clinic I go to. I am a 32 year old male living in Minnesota. I do have grand-mal seizures, and been having them since I was 13. Honestly, this does cause a bump in life for many. You could be the strongest person in the world and more than likely would have tough issues in life, and with life, living the ep life as I call it. Long history I could write pages about with the dealings in life, and stuff I'm going through and dealing with even as of right now. Maybe post some questions or ask for advice later. My main goal here is to help anyone I can dealing with this, and make a few friends if I can that a living with this also. I, taught by an old friend of mine, have a hard time calling Epilepsy a disability anymore, if anything as my friend taught me it's an Ability. Food for thought I guess. Hit me up if you want to talk, or need any advice. Would be very happy to help you out.
 
Hi Neil and welcome to CWE,

Many folks on here have all sorts of seizures, so having you on board will be great.
I've had E for over 30 years now and have had CP's and TC's. I had an unsuccessful temporal lobectomy and have tried 12 medications. Soon I will be having my 3rd VNS surgery. I haven't considered my E a disability, either. Just a bump in the road. Sometimes, tho, it's more like a huge boulder. ;)
 
Ty for the kindness. I having been dealing with E for almost 20 years now. I have probaly been on about 7 or 8 different meds by now, and had so bad side effect to some of them, like valporic acid. I have been thinking about having the VNS surgery, my mom an sister having been really pushing me to try it. I guess when I have my seizure, both sides of the brain go wild so idk I am researching more and more though. And your right , it can be a boulder, but heck, always loved a good challenge :) makes me stronger
 
Welcome to CWE, you picked a good place to come and get advice or help and even give advice, I have had Grand Mal for over 40 years now, so there are a lot of others here as well. Sit back with a cuppa and take a look around.
 
Thanks for this. I had my first (and so far only) seizure recently and I'm terrified of having a stigma attached to me or being told I have a disability, so what you said really hit home. I have a long history of mental illness and have only in the past few years realised that it didn't have to be a disability. I hope, if I do have epilepsy, that I can apply that outlook here too.
 
Yes, this can apply to anything and everything. I wish I would have learned this concept earlier in my life....Didn't start realizing and living like this till about 28. Ever since, things have been for the bad and good. But that's life for ya. It is a big roller coaster. Can always have some fun though :) And no problem, anytime That's what I'm here for :)
 
And I must say living this type of life has opened my eyes, mind, heart, and soul, more than i could have wished for. Now that I have figured out this concept, things may be good and bad, but are at least going uphill for now. :)
 
I also appreciate everyone's advice as my situ seems to be changing daily. So here is my update: after having a witnessed grand mal in Apr 2011, I went one year seven months with nothing. then I go into a travel agency to book a flight Nov 2012 (I'm terrified of flying) and I go down with a seizure in there. a week later on the phone with my brother describing the fight I was in back in Apr 2011 and I start feeling the seizure coming on. down I go. okay now we get to Feb 2013 I have a positive tilt table test so everyone thinks "oh you are fainting from low blood pressure and having seizures". great fine they tell me how to fix that by hydrating more and I carry on with my life. last Thurs I'm sitting on my couch and have a seizure, 5 hours later sitting in car seat I have another one. this past Tues talking on the phone to my mom I'm totally venting about the seizures from Thursday and I have another one - sitting down again.
I go in to my neuro yesterday and she says she still thinks these are being caused by stress and low blood pressure and she wants to consult with a couple of other docs. fine. today I sit on couch to watch some meditation stuff on you tube. I'm trying to relax and destress and 3 guesses? yep....I have another seizure.
I will admit that I've barely had anything to eat or drink in the last 7 days. Between my tongue hurting and being extremely depressed and stressed I haven't been able to stomach anything more than a juice box a couple of times a day.
my tongue is like ground beef I've bit it so many times in the last week. also my witnessed ones have all told me that my eyes were open. aren't open eyes a symptom of true epilepsy?
I hate the feeling of confusion after and yet I can't stop myself from trying to call people like my hubby or my mom to tell them I've just had another seizure. problem being it takes me a few tries to get the right numbers.
I am looking for anyone that has had some success in figuring out the following issues: any way to stop tongue injury and if not any ideas on quickest way to heal it? what is the best way to react after coming back to consciousness, that isn't going to make me feel so brain damaged? Let's face it, every time this happens now it makes me even more terrified than i was before. Lastly cw what meds are you on and how are your side effects? thanks for any help, insight, advice that anyone can muster for me.
'
 
:-( hockey. what a terrible thing to have to sit with. My daughter has had one grand mal and a few absence seizures, which all started recently as well. Do you have the option of seeking a second opinion vs waiting?
 
I don't know the fastest, best place to get a second opinion. There is an epilepsy clinic in one hospital in Toronto and there is a 6-8 month wait list to get in.
 
Neil, thank you SO much. I know there is a small section in this forum on tremors. But it didn't help me very much. Or maybe there is a larger one but I am new and didn't see it but I am DESPERATE! I'm 23 and I've was diagnosed about a year and a half ago when I had a grand mal seizure. I have had several small seizures since and two more grand mals. My medication was raised after my last small seizure and I noticed a good difference. But now I am having these horrible shakes. It's mainly just my hands. Which is not good for my because I work with a camera. It's really scaring me and it's getting worse. The last time I went to my neurologist he thought maybe it was a side effect of the medicine. I take Zonesimide (I may have spelled that wrong). I'm scared to death its going to ruin a career I have been working to build for the last two years. Any answers would be greatly appreciated!
 
Camryn if you go to epilepsy.com and look up your epilepsy Med side effects it does say tremor and poor coordination possible and to tell doc right away.
 
Neil i am literally brand spankin new. 24 hours in. i love this place it feels like home. i read through these posts and its like oh thats me 200%. i have been crying for the last two hours because it feels so good to know im not alone anymore!
hockey mom i have been through exactly what your talking about. it hurts SO bad trying to talk chew or sometimes even think when you have chewed on your tongue like that. even when i bite my tongue while i am eating it almost scares me and the sides of my mouth are so scared up from chewing on them too.
eat bread or anything that will dissolve in your mouth maybe cheerios. if you can get salt free saltine crackers try them. obviously chew slow.drink room temperature water or milk maybe even semi sweet tea.depending on how you like your tea. i say room temperature because the hot or cold make it hurt like crazy for me.
 
My 14 year-old daughter was diagnosed in January with generalized tonic clonic seizures. Diagnosis was delayed as the doctor initially attributed the seizures to her type 1 diabetes. EEG confirmed epilepsy. Started out on keppra but the 2,000mg dose is exhausting her. Started on lactimal and had a seizure 3 weeks in. Increased the lactimal and had bad side effects during week four. Now we are stuck at our 2,000mg keppra and 50mg lactimal doses until we see the doc on Monday to see what is next. In the meantime every day is a struggle to get up and go to school. Every evening is spent alternating between napping and homework. Weekends are spent sleeping. She is too tired to do anything or go anywhere.
 
Neil,
It's nice to hear your post and know that I'm not the only person that struggles with this, whatever it is. I have been working on acceptance for 37 years now :/. Through it all I have gone through times when I was seizure free and thought that I was in the clear, but it has been so long since I have experienced that. I forget what normal feels like and I often feel like I am a downer not just to myself , but also to those around me.
I had a baby last year and have been trying to get my medication in check ever since. I am going to the dr. Next week to try and see what is next, but as always, I'm not just scared that the medication won't work, but what side effects will be.
Feel free to pm me anytime!
Julie
 
hockey mom,
welcome! great place to be. a few ideas for your tongue, which is just hell ain't it.
if you can handle the cold, popsicles or frozen yogurt (better choice as you're getting nutrients). easy to buy yogurt and throw a bunch in the freezer for snacks.
if you can handle the heat, soup broth. this is my fave, soothing for your soul as well as your tummy. very comforting cuz lets face it, a grand mal makes us feel like shit.
if room temp is all you can stand, let fridge yogurt sit for 10 mins or so. i keep saying yogurt b/c sometimes ya can't eat for a week but it's bad in general as well as for E to get so low in nutrients, and yogurt replaces them quickly. plus it's yummy! a few other things room temp:
-bananas
-soft baking such as muffins
-cottage cheese (like yogurt let it sit out a few mins)

i found stuff like the banana and soft baking worked if i tore off very small pieces and slowly let them get soft like baby food in my mouth before gently chewing a few times then swallowing. doesn't sound like a night out but it does work. and gets easier day by day. good luck!
 
t/c

I sympathize with the tongue problem-ugh. Have had tonic clonics for 45 years now. Its a toss up as to which is worse,brain recovery or body afterwards. Time is best healer. The doc can give you a mouth rinse. That is mainly to curb infection of the tongue. Last t/c was July 2010. Have had some simple partials-like yesterday. Will take those over t/c any day!! Welcome to the forum.
 
Just a little curious and probably confused (normal state of mind these days). Many of you have replied that you suffer from t/C's and I assume take meds but it doesn't seem that anyone's seizures are under control. We have a friend (45 years old) and he has taken tegretol everyday for the last 15 years and been seizure free. Before that he took it hit and miss (younger and more carefree) and would have seizures here and there. His wife finally said get serious or I'm gone. So he did and he's been fine. On another note she still left years later but I think there are other forums for the reason why lol. It just seems that other than him there is no one else that the meds work on. It kind of leaves me feeling very scared and hopeless.
Sorry to sound like such a downer when you are all such incredibly nice and supportive people. I guess if this is the reality then its better to be ready for this outcome (meds not working) rather than the other (meds working).
I still have yet to be officially diagnosed. I know already that I'm the lucky recipient of low blood pressure so I get those fabulous episodes mixed in with possible epilepsy or pnes.
That's the next question: For those of you on meds for years who are not completely seizure free, have all of you had abnormal eegs?
Sorry again...I'm prying so you don't need to answer just thinking from my research that if you have never had an abnormal eeg then you MAY have pnes.
To be brutally honest one doesn't seem much better than the other as there's no real cure for pnes either.
Wow I am a real joy today!
Forget E meds I'm just going to ask for some good hallucinogenics and then I will write posts that totally entertain all of you!
 
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