Hello everyone, last Wednesday evening, I was home watching a T.V. Show...it's one I love and needed to go to the bathroom during an add break. Finally here is the ad and off I trot!! The next thing I know is, I am waking up on the floor in the bathroom, very shakey, sore and not knowing what had happend. I know that a new show was on the T.V. but have no idea what time I went/and out of the bathroom.
Fortunately, I had an appointment with my Neurologist the next day (Friday), so all day Thursday I slept on and off, had the shakes most of the time and forunately, my wonderder daughter came to see me and my sister came over and cooked a lovely dinner for me. I was so confused as I hadn't had a seizure since August 2009 whilst still in hospital after surgery. I have had numerous 'focal' seizures' before we knew what they were and the Neuro had 'uped' my meds and I have been good ever since.
Apparently, because I have had a lot of stress in the last number of months,(had to leave my home and husband), find somewhere to live etc, this is why it happened!
I was and still am rather shocked and a little anxious as I never had a seizure since getting home from hospital (except for focals). So now I cannot fly to see my sister as I was to go today and NO DRIVING for 3 weeks, when he will do another EEG.
Has anyone else had this happen when you are 22 months post op?
Thank you all for your support in the past, I am so very grateful for your help. Lesley.
Oh Lesley..did the neuro doc say you had a grand mal seizure? Did he up your dosage? I truly believe stress has something to do with having a seizure. When I feel the high stress level, I go right to bed until I feel better. I haven't had another grand mal since my doctor up'd my dose, but I know exactly how you feel...it's so scary. Keep the Faith, dear friend.
Ohh Leslie. The floor is not a good place to wake up on. :(
I live alone too. Luckily, I can feel mine coming on. For me; when I get stressed, my seizures worsten and I get them more often. Perhaps your body is changing and your meds need to be altered or even lowered (?). I was on tegretol for 2yrs, then it started to have an adverse effect on me. I was getting siezures again and the doctor took me off of it (eventually).
I hope you get better, soon. :)
Dear Louisa and Bem, thank you for caring! The neuro isn't sure as I don't remember anything at all, just waking up on the floor! And, yes Ben, it's not a good place to wake up. Bruised face and shoulder...doesn't look good!! LOL
I am having an EEG in 3 weeks time and in the meantime, he is keeping my Keppra at 1000gm morning and 1000mg at night and see how we go. I have to eat more than I am doing and try and find an outlet that I want to do...no idea just yet but I'm working on that. Thank you both and my dear friend Louisa, I hope you have a wonderful "Mother's Day" today.
Sorry that happened Lesley. I"m sure even bruised your face is still just as beautiful. I’ve not had a seizure so I can’t speak to those, but I just wanted to tell you that I was thinking about you! Be well my friend.
Thanks so much Trish! It means such a lot to hear from you my friend.
Hello Lesley, I am new to the group, sorry to hear about the seizures, how are you now? Are you still on Keppra? I was very moody and put alot of weight on with Keppra, but besides the weight who cares if yo don’t have a seizure I was unbearable to live with. The doctor changed me to Topamax. Moods changed within two weeks much calmer. No seizures yet!!! One other bonus I lost 12 kilos, it is one of the many, I mean many side effects!
Hello danni.p. Thank you for your message, good to hear from you! I’m doing ok thanks, the last partial seizure was last Monday, so am hoping I won’t get any more now. I take Keppra and have been real good on that; just had to increase them and am now on 1.500mh every morning and 1000mg every night, so, so far…so good!
Excellent new about the new meds for you…keep it up!!! So glad you also lost that weight danni; It is strange, as I have lost from size 14, to size 8/10!! Amazing, though I know I lost more when my husband and I started having trouble.
Take care my friend, luv Lesley.xx
How are you going with your seizures? You know I had never had a sezure until after my radiotherapy, and then they started. I was so annoyed! They stopped about a year later though and I was free of them for about 12 years but they decided to come back for a visit, and now I have full blown epilepsy again (for the last year)…very, very annoying! I take 3000mg Keppra daily as well as Topamax and Tegretol. I wish I had lost weight like you did. It’s made me put on soooo much! Very demoralizing.
I hope you are keeping them under control, and doing the same for your stress levels. Keep well and think positively
Hello Maria, good to hear from you! Yes, these darn seizures ARE annoying…never knowing when it’s going to happen. Today, I start on a mixture with Keppra and a new on (for me) Epilim. Will be taking 2000mg of Keppra and 200mg of Epilim at night, then 2500mg Keppra in the morning for 4 day. Then 2500mg Keppra and 200mg Epilim in the morning and the usual night dose, so hopefully, this will do the trick! I do hate messing about with the meds as I get the dizziness for the first few days, however, I’ll try anything to fix them! Maria were you free for 12yrs on the meds? and then they started again?, how terrible! I lost a lot of weight when I was in hospital for nearly 3 mths and then late last year, the problems with my marriage started(or got worse) and when I get upset, I don’t eat, so have been upset for some time. Am getting better slowly but surely, so I guess the weight will go up again even though I don’t want it to…no way will I be able to get new clothes now that I live along and have no financial help from my ‘husband’!
Will keep in touch Maria and I am usually close by if you need a talk or ‘chat’ in the ‘chat room’. Many thanks and take care.xx
Hi Lesley. I tried Epilim but got nowhere with it. I was actually medication free for the 12 years that I was also seizure free…thats why I was so annoyed when they came back. Thought my life was back to normal! I can understand marriage problems causing you not to eat, even though I do the opposite…I crave sugar when I get stressed, of all things! I am glad you feel you are getting better. It sounds like you have a positive outlook on life, even though I gather you wouldnt have while going through the marriage dramas. Men! Hopefully once youre meds take effect, the seizures will stop altogether. Try not to stress over them to much…I know thats easier said than done, but it definitely does make them worse.
P.S. I didnt know there was a chat room. Am learning something new every day…
I am not an expert, but I can say that what you describe is exactly what happened to my son prior to his embo.
He had a pulmonary AVM, and it was what they referred to as high postural. If he sat up or stood up too quickly, approximately 1 minute later he would go completely catatonic. They did some testing, and they found out that the shunt would drop his blood pressure and oxygen levels significantly, and it took about a minute for the issue to build. It looked exactly like a seizure, even though his neuro was clean.
Happy to report that he has not had a single issue since his embo…
I hope you are feeling better Lesley and try to keep the stress levels down (I know, easier said than done!!).