Epilepsy connected to other conditions?

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!!

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

9 Replies

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  • Sorry I forgot to mention on previous Scans they have found white masses on her brain also!?

  • Hi Jan,

    I have multiple conditions but not sure that they are actually related to each other apart from the epilepsy is being cause by a low grade but stable temporal lobe tumour.

    I luckily still have both kidneys but came close to losing one due to severe infection caused by a 'stuck' stone, I seem to excel at producing them (one of my few talents and one I wish I didn't).

    If the neurologist doesn't have time to fully explain during a consult you could always write or e-mail his secretary with your concerns and the neuro will usually have more time to reply in better detail which will, hopefully, allay some of your fears.

    The alternatives are to speak to an epilepsy nurse or a GP. The other option of course are the help/support lines here at epilepsy action or one of the other epilepsy charities or as you say there are other signs in the brain showing on scans then one of the brain injury charities may be of help, headway or brain trust.

    The best advice will always come from a medical professional. Before you go to the appointment it may be best to actually write down your concerns, preferably in order of concern (worst first) then the question is less likely to be forgotten at the appointment.

    I know this isn't necessarily the type of answer you wanted but hopefully will help in some way.

    Wishing your daughter well and hopefully some improvements in her condition sooner rather than later.

    Kindest regards

    Sporan

  • Thanks Sporan for your reply I have done some of what you say but one I haven't tried yet is to actually right to the consultant via the secretary.

    Thank you I'm sorry to hear about your tumour hopefully its curable!

    Which is why I need some answers to my daughters symptoms they have tested her for several things through the metabolic consultant she see's to no avail as yet, they keep testing for Fabrys disease as she has all the symptoms but all results are negative! Not that I want her to have anything but at least we can move forward and see some light at the end of this very long tunnel and hopefully cure her so she can carry on her life as normal as possible!!

    Take care xx

  • I know exactly what you mean about the 'not knowing' and the not wanting to get a bad diagnoses but the feeling that any firm answer is better than no answer at all.

    I do hope that soon you do get a proper answer and that treatment for what ever is found can be started and improvements quickly follow.

    Thank you for your thoughts and wishes on my tumour but unfortunately the location is such that even awake surgery will leave me incomplete. Radio therapy and or chemotherapy need to be targeted based on the actual tumour cells which requires a biopsy which id again pretty risky given the location so at the moment its a balancing act with problems experienced against any possible gain from the risk of biopsy and radiotherapy. Luckily it has remained stable in imaging size now for three years although the effects continue to increase with time. The surgeon has told me that at some point it will change but the when is unknown and I may live a normal life span if not a normal life.

    It does make it difficult having what amounts to a time bomb waiting to go off with no idea what time is on the clock but realistically we all have the same issue from birth, after all I could accidentally walk in front of a bus or be the victim of another form of accident the only difference being the percentage chance is far higher for me I guess.

    Still enough of me. I do hope your daughter soon gets the help you both need and you must remember to look after yourself as well. Often the carers and close family get left out of the 'kind thoughts' etc. when in reality it is often times the carer that has the hardest time. I can only imagine how hard it is for my wife caring and supporting me so my thoughts and wishes go out to you and your family as well.

    Best wishes and kind regards

    Geoff xx

  • Hi my 7year old has a Tumor mass in the brain and has been diagnosed with tubular sclerosis!!! It causes benign Tumor like masses in all the organs the more you have the more severe it is. One of the other symptoms are lighter patches on the skin, my daughter on has one which causes her epilepsy. Hopefully you will get some answers soon.

    Good luck

    Clare

  • Hi JanStott

    This sounds like a tough situation for you all to find yourselves in at the moment. I hope your daughter is feeling better soon.

    It is great to hear that she is being cared for by the medical teams at the moment and that they are trying to find a cause for what is happening. This should help the doctors to make sure she is getting the most appropriate treatment for what has happened recently.

    It is also important that the epilepsy doctors check that she is currently on the right epilepsy medicines. If they are not able to do this whilst she is in hospital, it would be worth you contacting her epilepsy doctor/epilepsy nurse to ask for a review. More information about getting the right treatment can be found on our website: epilepsy.org.uk/info/diagno...

    When your daughter is considering pregnancy in the future, she could ask the epilepsy doctor for a pre-conception counselling appointment. This will give her an opportunity to look at the epilepsy medicines she is on at the time and make any changes if needed before she tries to get pregnant. More information about this can be found on our website:

    epilepsy.org.uk/info/women/...

    I hope things improve for your daughter soon. If you want to talk about what is happening, or if we can be of any more help, please feel free to contact the Epilepsy Action helpline: epilepsy.org.uk/info/suppor...

    Karen

    Epilepsy Action Advice & Information Team

  • Thank you so much for your replies 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!

    So sorry to hear about both your children's illnesses it must be so hard I know when my daughter was going through her kidney problems at 9yrs old it was so hard you feel like you want to change places with them, I wish you all well and Take care xx

    Thank you Karen Epilepsy Action, I will pass on your information to my daughter when she is feeling up to it as I have to be careful hard as it is not to interfere to much as she says she can sort it!!

    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

  • Hi JanStott,

    As I am 60 they had trouble doing the lumbar puncture due to narrowed spinal spaces (used to do a lot of heavy lifting).

    It was done at a second appointment by use of live x-ray feed and I have to say, whilst not the most pleasant experience, it was far more comfortable and much quicker than the initial attempts.

    I am glad it is being done by an anaesthetist as because today there is much more common use of epidural's the anaesthetists as a result are far more adept at getting the needle into the spaces and exactly where it is needed.

    I wish your daughter well and hope things soon progress well for her.

    Kindest thoughts

    Sporan

  • 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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