Been to neurology

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Buddy's owner

Buddy's owner

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He was lovely. We explained everything and how I was weaned off carbamazepine a few years back and did well for two years then in october this year had a massive full blown tonic clonic. He was going to leave giving me any medication til we said well years ago I was weaned off carbamazepine and I did well for a few months, I had a seizure but they witheld giving me anti seizure meds then I had another seizure always tonic clonics. They then put me back on the meds. He said well that changes the picture. We need to steer clear of anything like carbamazepine that could cause another lupus flare up so he is trying me on keppra aka the dreaded keppra. He warned me about the side effects so told him I knew about keppra rage, he said he has given his patients keppra and only about 10% got the keppra rage but he said if I get that stop. He is starting me on a low dose. Going back in 6 months. I think those patients who didn't get keppra rage were lucky. We shall see lol.
 
I'm glad you got to see him! Fingers-crossed that the Keppra works for you . I do know folks for whom it has been the perfect match, with no side effects at all. If you are able, you might try taking a B6 vitamin -- it has helped some folks with Keppra's mood-related side effects.
 
I am one of those that does not get the rage associated with Keppra. I am up to 1500 mgs. daily and the only side effect I have is a rash.
I am going in today for video eeg and will tell drs. about this.
Good Luck to you with Keppra.
M
 
I had no side effects on Keppra either. Always take note of the % of people that experience a particular side effect before getting too concerned that you will be one of the "unlucky" ones who will experience a particular side effect. As an example, I'm on Fycompa and after reading the black box warning at first glance you'd think I should be a psychotic maniac running around thinking about killing people! This is far from the truth for me, and upon closer reading one can note that the 5 chance of this happening is very low.
 
Well haven't yet started the keppra. Been very poorly since saturday night. Went to the doctors yesterday had bloods taken, he didn't want to start me on my keppra til it is sorted. Anyway today it was worse the pain was a 9 so back to the doctors she sent me to a&e hours there at one point the nurse stayed with me while mum nipped outside to make sure I was ok. Anyway doctor came in examined me and said what he thought it was, sent me for an x ray and impacted bowel so got that disgusting stuff called movicon. So tomorrow mum is phoning the doctors to cancel tomorrows appointment and get my keppra sent to the chemist which just happens to be next door to the doctors surgery.
 
You're definitely overdue for some good luck. I hope you feel better soon.
 
Nakamova said:
You're definitely overdue for some good luck. I hope you feel better soon.
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I'm fine now, I can now stop taking that disgusting movicol that the doctor in a&e gave me, he said it is tasty but I think his taste buds are broken because it is vile stuff even in cordial. Orange cordial makes it a bit more bearable but still disgusting. Starting keppra after the weekend. Doctors advice. The staff in a&e even said I've been through it big time. This is the same hospital where I was told I had an ovarian cyst but when I asked a different lady in gynea funny spelling she said errr no where did they get that there is no cysts at all. Saw a friend in a&e who walked right past my bed and didn't say hello, I was in the corridor as when I went for an x ray somebody else moved into my room and every other room was full. Mum reckons there is something else going on besides what they said it was.
 
It would be nice if they got their stories straight! Glad you're feeling better though.
 
Nakamova said:
It would be nice if they got their stories straight! Glad you're feeling better though.
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Yes it would. Once my gallbladder was playing up resulting in a referral to gastro where he told me oh it's in your head, I wish I was imagining it. I had my gallbladder removed in 2012 I think it was.
 
Just out of curiosity, did they start you on a magnesium/calcium/b6 supplement after the gallbladder surgery? A lot of folks become deficient after having the gallbladder removed, and being low in mg can be a trigger for seizures.
 
Nakamova said:
Just out of curiosity, did they start you on a magnesium/calcium/b6 supplement after the gallbladder surgery? A lot of folks become deficient after having the gallbladder removed, and being low in mg can be a trigger for seizures.
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No they didn't, though by the looks of things I haven't had that issue thankfully. My seizures are usually because hormones trigger them hence why I often had at least one a month so another is overdue but started keppra now.
 
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