catamenial epilepsy

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Hello , I have just recieved a copy of a  letter from a nurologist about the diagnosis I have recently been given. Non epileptic disorder which I find is a stupid name because people think " oh Its in your head".  Any way I have always said that Its to do with my peroids , now in this letter it says Non epileptic attack disorder ( some of these are catamenial) so I am thinking how can some be that when my seizuers co inside with the build up to my period which to me could only be catamenial epilepsy !!!!!!!!! is it me??? , bit confusedrolleyes. because if it is this then I can be treated for it with contraception surley , then I can go back to work , but I have now been reffered to a Nuropsychologist , I have said that I am not depressed or harbouring any deep rooted feelings if I was then I would admit it so i could get the correct help. I just wish they would listen to ME , they arent hearing me. Any one else having the same problem?.  

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  • Posted

    Hello hazel70459.  I have been diagnosed with Catamenial epilepsy.  I have been through many treatments.  Just recently, within the past year, I have finally gotten a handle on my catamenial seizures (seizures and auras that occur around ovulation, before my period starts and then as my period has ended.  Large doses of progesterone cream have helped my auras and ability to focus, tremendously.

    You have said that you are able to see seizure patterns that are related to the change in your period.  Q: Do you have auras (sensations that come just before having a seizure)?  These sensations and association to your menstrual cycle are not in your head. (log the seizures and start & end of period on a calendar and show to your neurologist. 

    The latest treatment I had for the Catamenial epilepsy seizures is called VNS (Vegus Nerve Stimulator).  Since I am able to notice my auras, I am able to use the VNS devise to calm my seizures before a gran mal seizure occurs.  Perhaps you may want to talk to your neurologist and have them look into the VNS and, also, the use of high doses of natural progesterone cream for seizure control. IMPORTANT: Estrogen and the use of "synthetic" progesterone may be dangerous and may actually "cause" more seizures in women with Catamenial Epilepsy.  I wish you all the best.

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    • Posted

      Thank you sooo much for taking the time to reply to me. I do get a pressure on the right side of my head days before a period which they have put down to migrain, plus before I have a seizure I get a nausea feeling and then it happens. A doctor in A&E said to me that I could be fitted with the maridian coil which will balance me out. I am now thinking of asking   my doctor to put me on contraception now as I dont know how long I will be waiting for my appointment. I am on my period now ( nice for you to know ha ha ) not much of a break from seizureseek. But I am feeling positive that now I can get help. Thankyou again.
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    • Posted

      hazel70459,

      About getting a "migraine" before your period begins, that might be due to dehydration or low potassium.  I have found that, for me, either taking Potassium Chloride pills and drinking LOTS of water.....or.....lately, I have noticed drinking Coconut Water helps me, a lot.  You never know? Maybe ask your doctor to see how your potassium levels are or just try drinking some coconut water (if you have access) and see if it helps.

      You never know...Glad I was able to help, a bit and take care.

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    • Posted

      Hello Thankyou for replying. I only drink water as i have never liked hot drinks. been eating bananas daily. havent been able to get an app to see the doctor  yet as i was going to ask about contraception to see if it will stop seizures , had another today finished my period tuesday. definately is a pattern. I have been keeping notes and videod seizures . staying positive at least I know it isnt life threatening.How are you? apart from the cream are you on any medication / contraception that helps?.
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  • Posted

    Hi I have epilepsy and NEAD and I have been put on a medication clobazam which can be taken PRN (when needed) to stave off  grand mal seizures. If you have a pattern or warning prior to your seizures perhaps you could discuss whether this would work for you at with your neurologist/GP.  
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    • Posted

      Hi, Nicole,

         How can you have both epilepsy and NEAd? Do you know doctor's view of what causes NEAD. Hold on. It is a terrible memory of something in your past life that can not be remembered. So it is a fight between your unconous mind and your conous self. Excuse my spelling.  All in your head etc. You imitate a epilepsy seizure. Mind over body. I wouldn't wear the label NEAD. I was on clobazam it didn't help, just side effects. I was on four epilepsy medication at one point. The side effects were horrible to deal with. I get a aura, seeing the colour green. I have tonic and clonic seizures. Very painful etc. They happen ,run their course and I get on with my life. It's just a part of me now. I sought out help and I was label. Doctors act like they are god like  but they don't know every thing about the human body. DEAD is a swipe under a rug.If you truly also have epilepsy I am sorry and hope the best for you. Seizures are the pits in the cherries of life.

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  • Posted

    Replying to Hazel170459. I was diagnosed with temoral lobe epilepsy in 1987 when I was 22 but for a variety of reasons decided not to medicate as I was going into my final year of university and did not wish to be 'drugged' up. I am now 48 with 3 children and am persuing the hardest battle of my life as my health has been so poor that copious amounts of reading and thankless consultant visits has amounted to me realising my problem is CATAMENIAL EPILEPSY despite the fact the neurologist I saw went so far as to say ' This woman has no form of epilepsy whatsoever' despite him requesting my original diagnosis made at the top London hospital for such things! He suggested psychotherapy which I took as I felt so ill I wanted them to see I would play ball. The clinical psychologist I saw agreed that after working with me extensively that my symptoms were there regardless of my mental state at the time.I now await official diagnosis and have applied to se seen back in London where they have ownership of the TLE diagnosis.  I fit all the criteria for catamenial epilepsy...left sided TLE, seizures linked to cycle particularly in the luteal phase but reckon I have the C3 pattern which is right across the ovulatory, menstrual and luteal phase when charted. Fantastically and interestingly as I had stumbled upon Catamenial Epilespy in my readings I also was put on emergency Progesterone only contraceptive pill for 3 weeks whilst awaiting a Mirena coil fit. The effects of this tablet confirmed my suspicions that this was catamenail epilepsy as I was so much better on this tablet, my hair stopped falling out in handfuls, the raynaulds decreased massively - I had kept telling the doctors...'this is the epilepsy playing up' but they all looked puzzled...I begain to understand the anticonvulsant properties of progesterone and realised many of my awful symptoms was likely a massive progesterone deficiency. I suspect I have anovulatory cycles and so get no progesterone from the corpus luteum being broken down. This has been going on for years and I would describe living in an ongoing state of feeling ' which way is up?'...like the body is having to work super hard to constantly rebalance itself, like being in a snowstorm. At its worst I have felt an actual sense of going to die which was terrifying. I was hospitalised in A&E for 3 days due to Fibrin degradation products in my blood...high D-dimer of 800+ which suggests too much oestrogen flying around.

    So, hang onto what your gut instinct is...I have been certain there was something wrong with me. My mother had sudden early (age 33) cessation of menses and no HRT at the time. 10 years later she diagnoses herself with the super-dangerous Addison's disease which is adrenal failure as the doctors kept missing it! Her endocrinologist says it is highly likely I would have an endocrine problem due to her history. What i do understand is that in women with TLE the hormones get all messed up by the seizures. Over the years since 1987 to 2012 when I became acutely ill I have had regular senses of collapse, profuse sweating with no apparent cause,  a sense of poison pumping round my blood like being poisoned internally - a truly vile feeling. I have had my fight and flight response in a switched on state for months at a time which was exhausting and yet I toughed it out and 'got on with it' as my symptoms were so weird. I recall after daughter no 2 that I would get up in the morning and not know how I was going to get through the day. My body was so weak. I reckon it has all been a progesterone deficiency. So for now Zelleta contraceptive pill is keeping me sane...an accidental discovery but so effective I said I will delay on the coil fit until I get diagnosed properly. I know Progestins (synthetic progesterone) has a different effect in the body to natural and I would prefer the natural bio-identical stuff and the Mirena. But first i need a doctor who has even heard of this condition and what to do with it! Good luck and knowing just how frustrating this all is..

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  • Posted

    Hi I also believe I have epilepsy that's linked to my cycle. I've been reading lots about natural progesterone and how this can help but my neurologist knows nothing about this and it isn't readily available in the Uk. Please can you inform me where you buy your natural progesterone cream?

    Many thanks

    Sian 

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