New to this and a bit scared.

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anette

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My husband has Epilepsy and also a Brain tumour. He is getting "episode" as the docs call it. Tingling, speach and Migranes. I am getting a bit scared now and don't really want to tell my Kids ( grown up with own families or in-laws in their 80s) I am a coper normaly but I just need somebody to vent to. So, I hope that I am in the right place. I hope so :) Anette
 
Hi Anette, welcome to CWE!

I'm sorry you and your husband are coping with the tumor and with the seizures. I know it can be hard to take everything in and the symptoms can be scary, especially at first. You've come to the right place though -- folks here have experienced it all, seen it all. CWE members are people with epilepsy, and also supporters, caregivers, friends, and family members of people with epilepsy.

Please feel free to vent, and to ask questions -- often, the more information you have the easier it can be to be to get a handle on what's going on.

Best,
Nakamova
 
Funny answering my own post. Having read through a few I think my husband has " simple partial epilepsy. He is at the moment having a sleep after a turn(?) Migrane and a bad back. I feel so helpless on what I can do for him.
 
Thank you very much. It just helps to know I can let go, as I don't want to worry my husband even more. Anette
 
Just being supportive goes a long way, believe me. Simple partials can often play tricks with the mind, so having someone to get a reality check from is helpful too. And keeping track of meds, symptoms, side effects -- all easier with another person to share the load and advocate with the doctors. Hugs are pretty great too. :)
 
Wow you Guys are good. I have kept a diary for a while now and looks like its stress mainly. We have done 23 years in the British Army so we have always used humour to cope with most thing. Especially when hubby went to some strange places of duty. Yes, Hugs do help even from afar :)
 
Welcome, anette. My wife could relate to what you are going through. I think that in many ways my epilepsy is harder on her than it is on me. I have lots of simple partial seizures, and even though they mostly don't interfere with my life and are kind of controlled. I have had them now for over 30 years and have several hundred a year. I rarely have the big tonic clonic seizures, though. Only about 4 or 5 in all this time.
In any case, I am used to it and do not get scared by the seizures. I imagine it will be the same for your husband as he becomes stabilized. Hang out here where you can get support for yourself from people who understand what epilepsy and seizure disorders are all about and who don't get freaked out by it.
The tumor throws a different element into it, because I think that many of us don't have any known cause for our seizures, or anything visible going on in our brains. (That didn't come out quite right. I don't think I have anything going on in my brain this morning! Maybe I need more coffee.)
In any case, welcome! Best to you and your husband!
 
Welcome Annette,

As the others said, your are in the right place.

I'm 60, only found this forum 1 1/2 ago and the help and understanding I've found is great.

I too have simple to complex partials.

-----HUGS-----
 
Thank you Arnie and Jyearta I have told my husband that I found you all and he said good. He has also told me that I make him feel worse as I worry too much which in turn worries him. Talk about going around in circles. I try to be calm but it is hard as I don't know what to do for him. I just get him to relax. I know when he is getting one as I can just look and my stomach goes into knots and within 5 mins he starts feeling crook. We are off to get his new glasses today but he had a slight loss of feeling in his arm so I wanted to cancel but he said no. He had his tumour for nearly 14 years and it is just sitting there and MRIs have been ok. He had radiotherapy so his Neurosurgeon says maybe that has in part to do with it but we are awaiting an appt from another speciallist to check. Well, he is telling me to hurry up so he must be ok :) Till later Greetings from New Zealand
 
I'm glad we can help, Anette. If your husband ever wants to vent or ask questions or anything have him post something here or send a pm. I would be happy to chat with him about worried wives, or answer seizure questions. Say hi to him, and stop worrying! :)
 
Welcome Annette, :hello:

Sorry to hear your husband is having seizure activity, but it's great that his tumor is still progression free after 14 years. That's wonderful! I have a tumor as well. I got rid of most of it with surgery and chemotherapy, but, though it is considered a low grade tumor, chances are it will return at a higher grade one day; could be next year, could be 20-30 years. :dontknow:

Anyway, fortunately, I haven't had a big seizure since a bit after surgery. I still have weird twitches, jerks, and tingling sensations now and again, but nothing too bad. But my dad who I live with and take care of still won't even let me stand on a chair to change a light bulb for fear that I might have a seizure. So yes, it seems to be harder on family.

I know it's hard to trust MRI's. When you experience new or increased symptoms, but the MRI shows no change, it makes you doubt yourself. But then when you experience something that you know isn't your imagination, it makes you feel like maybe the MRI has missed something. I think maybe both can be correct. You can have new or worse symptoms without having enough new tumor growth to show on the MRI...or at least not enough to worry the doctor. And new growth doesn't necessarily mean progression of the tumor.

All the best to you and your husband! And don't forget to take care of yourself, too!

P.S.
I don't know if you're interested, but if you have questions about the after-effects of radiosurgery or anything tumor related you can go to The American Brain Tumor Association site. CWE is better for seizure related issues, but there are some questions that are more likely to find an answers there. BTW, there are others there from outside the U.S.

http://www.inspire.com/groups/american-brain-tumor-association/discussions/
 
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Hi Arnie I have passed your message on to my husband. We are doing ok at the moment and with the positive comments coming our way we feel well " Hugged" :)
 
hi anette,
welcome, you're in the right place.

it took 19 years to find the cause of mine (right now it's a lesion but they're saying low-grade tumor is a possibility. gulp. won't know until after surgery)... removal of amygdala and part of the hippocampus. i get your husband's feelings, and my boyfriend gets yours. i'm sure the two of you could go for coffee for days!
most of the time when a partial hits me he can tell from across the room without even looking. it's so hard on him. he gets so scared. but, what he does, and the best you can do, is just go through it with us. he stays beside me and watches for signs it's getting worse/better, and when it's done it's all hugs. if it turns into a grand mal then he's prepared.
i've thought lots about how hard this must be on the people around us. i hate being me but would not want to be in your guys' shoes either.
HUGS to both of you, and keep us posted.
 
Hi qtowngirl
Thanks for your kind words. My husbands tumour sits inside the brain and no surgery is possible but as it is just hanging in there, its ok. Yes it is scarey but when you guys go through it but then....we love you and thats all there is too it. Ha, would love to go for coffee or a Wine ( hubby not allowed to drink and i won't on my own :) ) in wonderful Canada :) I am original from Germany, hubby from the UK and emigrated to NZ in '95, we love it here. My first choice was Canada, hubby said too cold lol Do you know when your surgery is? We will be thinking of you and sending healthy vibes all the way Hugs back at you
 
ah crap, no surgery possible? how frustrating, sorry to hear. fingers crossed there's no changes!!
funny, wine works for me! it's backwards again - i'm not supposed to drink and my bf doesn't care to drink alone.
so... canada ey? it's great here - only 5 degrees today, sunny and nice, and it's usually one of our coldest months. global warming ey.
i know nothing about new zealand, except the name is pretty so i imagine the country is too :)
surgery is this summer unless i get a 'someone cancelled' call and in that case i have no idea. but planning for roughly five months. catch 22, i want lots of time to prepare but it's also more time to fret (lol cry and pull my hair and...).
may i ask why your husband's tumor is inoperable?
 
Hi again :) The tumor is in the wrong place to get too but its just sitting there. Hope you will have a definate date for your surgery. Your summer is our winter. New Zealand is awesome, just bring it up on your pc ( something else to look at) We have tropical areas, rain forrest, glaciers and just wow! but I am biased lol One day we will make it to Canada, if the Bankmanager hasn't lost his sense of humour!
Fingers crossed for you and yours
 
hi

hello , I am so sorry you have to go through this as well as him . If I wew u I would have a group meeting with your children and tell them about this . I am sure they love their dad and should have the write to know about this .It may make it easier on you . I am 41 my father 64 he has been sick for the past 4 years and its a day by day process but my brother and I were told quoit a few years ago and it is not the best thing to know but now I call him everyday and my mom is also a nurse .Even though I am the one with seizures I have a lot of anxiety because of my dad . I hope I helped you out a bit . jenn p.s. sorry I don't remeber names when I write to people .
 
Hi Jenn Yes the kids ( 30 and 36 yrs) do know about everything as we are very open about it. It is just they have their own worries and I don't want to add anymore. As a family we have been through heaps of stuff and are close. My in-laws are in their 80's and his dad had a stroke two years ago, still mobile and obstinate!. I try to keep it calm for them, they live at the end of our garden. :) We have good and bad days but I have found since reading this site that I am the lucky one and I love my hubby very much and together we can make evry day count. Thanx for your words. :)
 
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