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Epilepsy Research UK
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Kepra and lamotrigine. Possible bleed on her brain, she is having a lumbar puncture today.

Hi my daughter takes max dose of Kepra and lamotrigine 400mg her Neuro has increased her dose again last three times he increased it he said that's the max dose you can take of lamotrigine!! (because she wants to have children eventually she is 28 years old apparently this is the only drug she can take whilst being pregnant for epilepsy.)

She has actually gone worse has had 3 Tonic Clonic's seizures and full body jerks since Sunday and was admitted to hospital last night with severe pains in her head and violently being sick they did a CT scan but couldn't see anything they have now said it could be a possible bleed on her brain and she is having a lumbar puncture today!!

Previous Scans they have found white masses on her brain also!?

My daughter has been on and off being poorly since she was 9yrs old she only has one kidney which she now has kidney disease of and the epilepsy started about 4 years ago.

Has anyone had symptoms or experienced anything like this? I'm worried sick please help if you can

Many Thanks for reading this xx

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Hi Jan, sorry to hear the news of your daughter... May she recover soon... Just an enquiry, many don't enjoy the medicine Keppra, or it doesn't suit them due to constant reactions. Are you sure the Neurologist isn't causing a reaction of the two drugs together; perhaps change to another one or get a second opinion. I have never been on both but I have heard many say Keppra doesn't suit them. Keep us posted.

Les

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I am so, so very sorry to hear this. I never got in with either drugs let alone mixed together. They gave me bad side effects & did not stop my seizures.

I am now 35 & I gave birth to a little boy in February. I have been seizure free for 5 years thankfully & I take the drug pregabalin. I know some medications is not good during pregnancy but I was absolutey fine & our son was born a very healthy 9lb 10oz plus I breast fed him. I do hope that the doctors can support & help both you & your daughter. Good luck. Xx

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Hi Jan, I was diagnosed with grand mal temporal lobe epilepsy in September 1999, having my heart stopped for 4 minutes after a 2 and a half hour seizure. I was diagnosed with Tegretol which went up to 1000mg per day, causing extreme panic, social fear, intense anxiety and depression. I found myself in 2010 joining the Church of Jesus Christ of Latter Day Saints. My blessings after baptism told me join the gym, since then I've found myself qualifying for level 2 & 3 personal fitness training. This has given me a serious understanding of my emotional stresses, realising that it's a mental affliction, but to control my epilepsy, is through my heart & soul. The strengthening of my heart from good breathing routines, with my regular cardio vascular exercising (ie) rowing, riding, jogging and cross training. And the opening of my lungs, from the cardio respiratory exercising (ie) body weight, free weight and resistance machines has taken the panic stricken thought away from my mind with my epilepsy. The strengthening of my muscles has again weakened my nerve activity. Your heart & soul controls your mind, good nutrition (ie) fruit, carbohydrates, protein and fat, again strengths your beliefs and faith. I have given up my medication, if I do feel a wave of nerve activity, i'll just get down and do a repetition of press ups, breathing in my nose as I decrease, and out of my mouth as I return up, fully oxygenating my body, raising my natural highs of the chemical endorphin, creating confidence and riding my mind of my de ja vue epileptic thoughts. Fitness is the key to controlling epilepsy.

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Really sorry to hear what your going through, you must be so worried. I know they don't tend to prescribe it as much these days as they worry about spina bifida in babies. But I took a low dose of epilim (sodium valproate) for both my pregnancies. My children are now 11 and 9 and are perfectly fine. I still take epilim and am fine too. Fingers crossed your daughter will soon be well xxx

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Thank you so much for your replies Carley, Spikeysusie, Darren & Les xx

It means a lot it is so frustrating not knowing and I know what you mean Geoff even when you do know it has its trial and tribulations!

Really pleased you went on to have a healthy baby boy Carley & Susie too I told my daughter this morning to try to raise her spirits :) Its so hard when your children are poorly you just want to change places with them to take all there worries away.

I wish you all well and Take care xx

Update is they tried 3 times to do a lumbar puncture yesterday but couldn't do it :(

so I have just spoken to her again and she is going to theatre as an anaesthetist is going to do it now! She is at our local hospital Stepping Hill which im not happy about as her Neuro consultant is at Salford Royal Hospital I wish she was there instead where they know what they are doing and about her symptoms etc

Thank you again everyone

Take Care xx

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Oh dear Jan, I feel so sorry for your daughter. I am also 28 and currently trying to get pregnant.

I tried lamotrigine and keppra (high doses) as a teenager and neither helped me. However they are both ok in pregnancy. I now take epilim (sodium valproate) and it is this which carries a risk for pregnancies. BUT it is the only drug that controls my epilepsy. I was completely controlled for 7 years. When I got to about 25 it seemed sensible to try to reduce the dosage (lower dose, lower risk). I got down to 800mg (pretty low dose) but then last year I had 2 seizures. I put the dose back up to 1000mg. After consulting with a neurologist my husband and I started trying for a baby deciding the risk was still pretty low.

After 3 months we hadn't got pregnant and then found out that a new report had come out suggesting the risks were even higher than previously thought. We stopped trying and again consulted with the neurologist. In the end we decided that I had been on 800mg for a couple of years with no seizures and so that was a fairly ok dose for me and that the risk of changing meds and having lots of seizures while pregnant was a much worse option for me and the baby. I have just reduced my meds back to that and we have started trying again. Now just waiting a couple of weeks to see if we have been successful... :)

I really don't know that your neurologist knows his stuff about this. Try to see someone else.

Love and hugs xx

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Just read your reply and was suprised to see the neurologist she sees is from Salford royal as so is mine!!! He is brilliant. If she can get to see him it would be great. His name is Dr Clough. He has been so nice with us. Talked us through the pros and cons of all the options but let us decide. He even patted me on the back and wished me luck as I was leaving the last time I saw him! He is the favourite consultant I have had, only started seeing him last year :)

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Hi

Thanks for all your replies :)

My daughter's update is she is still in hospital it isn't a bleed on the brain, she has had a lumbar puncture and MRV scan to rule this out. She still has the severe headache and sickness she is only just starting to drink a little but can't keep anything down at all she hasn't eaten for 2 weeks now the headache is being controlled by IV morphine and paracetomol plus anti sickness she is very weak and is dizzy when going to the toilet or sitting upright, her last tonic clonic was a week ago so thankfully she hasn't had anymore but has developed absent seizures which is pretty scary :(

The Neurologist at hospital has started reducing the lamotrogine by 25ml every 48hrs until she gets to a level where the side effects stop!!

Dr Mohanraj is hopefully back from holiday today so hopefully he will be able to lease with the hospital my daughter is in.....................

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Hi all still no further nearly 4 weeks on!!

Jen is out of hospital now she has tried to eat but is still being sick and her headache is only controlled because she is taking strong painkillers managed better than when she was in hospital. Jen has been told she has Toxicity (an overdose of lamotrogine through no fault of her own) she increased as per her consultant's instructions.

Friday Epilepsy nurse rang her back further instructions from her Neurologist is now to increase Kepra as she has already decreased lamotrogine twice and still the same, still not been seen by her Neurologist though I just can't work out why to me this is serious but no one seems to be doing anything, whilst her epilepsy nurse was on the phone she said that her neuro thinks she may have an infection as the sickness has carried on throughout!! GP appointment booked for bloods on Monday!!

Totally pi**ed off that no one gives a damn!!

She has lost 22lb in weight in 4 weeks had 8 tonic clonic seizures.

I'm going to have to go private but not sure what type of consultant I should take her too as she has had 1 kidney out and has kidney disease also plus has had an internal rectal prolapse 6 years ago too :(

Lamotrogine is now reduced to 125mg am & pm

Kepra is increased to 1500mg am & 1750mg pm

and she can go with Kepra to max of 2000mg am & pm

Clobasam is 10mg 3 times a day

Since the increase of Kepra she dizzy and uneasy on her feet.....

Any advice very, very welcome please??

Sorry to go on and on....

Thank you so much to you all xx

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Hi Jan, so sorry to read about your daughters illness, it seems so unfair that one person has to go through so much. I take Kepra and have done for nearly 3 years now, to start with I felt awful even though I was introduced slowly to it I felt dizzy, sick and very clumsy but after about 3 months these feelings reduced and I now have no side effects with it, this was the first drug I have tried for epiliepsy (tonic Clonic) and then had lacosamide added so I cannot comment on other meds but every time I have an increase the same effects come back. I hope that you can get to the bottom of it and your daughter gets her life back. Don't give up, try and find an epilepsy support group near to you, I've found the support tremendous when your feeling really low and just to hear others advise/ideas really helpful. Good Luck

Bev

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Hi Jan, I was just reading your daughter's whole sage, sounds horrible, I'm so sorry you and your daughter had to go through that. I really hope it's all sorted now though! I was on Keppra and Lamotrigine together, both very high doses, but we found that the Keppra was doing nothing to help, only making me worse and always being very dizzy and uneasy on my feet, because the side effects were so strong. Obviously it's different for everyone and it sounds here that the Lamotrigine was causing a lot of issues, but maybe if you decreased the Keppra, your daughter may not be so dizzy and uneasy on her feet, just a thought... You also say about moving hospitals, I had to do that several times, so I know the feeling. Have you ever considered the National Hospital for Neourology and Neouro-Surgery? It's in London. I go there now and my epilepsy neurologist and nurse are both absolutely lovely. It's on NHS too, so you wouldn't have to pay, just a suggestion... Also, (sorry a lot of also's...) if you still haven't seen someone and she's still having seizures, you could always possibly maybe next time she has one, you could take her to A&E, coz then they have to at least do something right there and then. You've probably tried that, but I know from experience that if on your notes it says you've been to hospital several times coz of seizures, you're seen quicker. Sometimes the system is ridiculous, but that's the way it is, unfortunately... I hope she's feeling much better though and this advice was not needed, however if not, I hope it helps! :)

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