kelly wrote at 2013-02-12 19:38:37
I was 42, had my 4th and final child and went and I had my Merina fitted in July 2011, I did experience the following side effects over time, more spots, loss of libido completely, and then on the 12th March 2011 - 4 GRAND MALs in one night, everyone had gone to bed and it was around 10pm, I went to the loo and had just finished went to reach the toilet roll with my left hand but my hand froze and would not quite reach it, I felt my eyes pull to the left and it felt like my head was turning / pulling to the left and looking over my left shoulder, my eyes were really pulling left and I felt my self begin to slide of the toilet, I remember saying “no” as I though that I was dying and was petrified with the most ultimate sheer fear, I was very scared and thought of my children, and that’s what I remember, I don’t know how long I had been on the toilet floor (I had not managed to clean my bum or pull my clothes up). I then vaguely recall reaching for the lock on the toilet door, I don’t know how and I do not remember but I next recall leaning over our bed and saying “I think there is something wrong” (he later told me that he had heard me clambering up the stairs slamming the stairgates, he said it sounded like I was really angry or was extremely drunk but at the time waited till Id got upstairs.
I then immediately slumped onto the floor and proceeded to have a Grand Mal on the floor of our bedroom, during which time he called an ambulance and was putting me in the recovery position. I was laid on the floor and during my post ictal period struggled to speak but could hear him. This must have been the second seizure as the first will have been in the downstairs WC. I remember seeing the black shiny shoes of the paramedics near me, they tried to get me up but I then had another Grand Mal in front of them. They took some readings whilst I was on the floor my blood pressure was very low (its normally low around 90 / 60, my usual pulse is around 60bpm) but was lower than usual, thy did my blood sugar and then put me in the ambulance, I had started vomiting, was post ictal. I eventually came round in the ambulance, vomited all the way to the hospital. In triage I was put on a trolley and slept, the doctor eventually got round to seeing me and woke me, this must have triggered another Grand Mal on the trolley, I had wet myself and was very exhausted, felt nauseous and really just wanted to sleep. They moved me to a ward and I slept till the following day. Felt much better in the morning though was still very tired. I had a CT scan, X-ray on my foot which looked broken as I must have injured it whilst getting up the stairs at home, lots of bloods completed. Nothing abnormal was found except my white cell count was elevated. I was discharged and sent home.
I know that I don’t get much sleep, e were going through a stressful time and were due to move house 3 weeks after this seizure episode, I hadn’t slept well for a few nights being woken every couple of hours by my daughter who slept in our bed with us at the time. In the weeks that followed I saw the neuro who told me that if I have another I will need to be medicated. I had an EEG completed to test for epilepsy but everything came back normal. I proceeded to get on with my life (without my driving privileges) and tried to put the whom awful experience behind me.
11th December 2012- Had not slept for 2 nights, stressed up to the hilt, my hubby had suffered a brainstem stroke in August 2012 which left him paralyzed for months, by this time he was re-gaining some movement and speech and had spent probably 7 hours making my day a complete misery by taking out his pent up frustrations on me subjected me to a dayful of verbal abuse. I was very understanding he had been through hell and this was not him it was his illness. Unfortunately even by 11pm we had not make up and I was really tired from the nights before and the entire workload of our businesses and running the house, 4 children etc it all was on me. I came to bed very late and laid in bed. I felt my eyes pulling like before and realized what was happing, I grabbed my husband’s arm and said “it’s happening again” and that’s the last I recall. I woke on the floor next to the bed, I had seizured for 4 minutes and fell asleep, I hit the laundry basket as I fell off the bed and bruised my arm. I had bit my tongue, wet my 16 year old witnessed and myself me (my husband was not well enough and had to call our eldest to help) they ambulance took me in again, I vomited the entire jouney, slept on a triage trolley and was sent home at 4am – Awful!
Was put on Cytalopram for help with all the panic attacks and fear I was going through, had a terrible time over xmas and new year with panic.
I researched like mad as I could not figure why this was happening, I still wanted to blame it on my life events and choices but found a possible like to the merina IUD online, I decided to have it removed.
7th January 2013 – IUD was removed by my GP – he went with my decision but did explain that it is unlikely to be a link as this IUD is used with people who suffer epilepsy so really shouldn’t be responsible for causing it. I read and read around it and to rule it out of the equation it was removed within 5 mins. I did not know if my body just wanted to reject it, maybe because its made of silicone and maybe it relapses too much hormone who knows.
17th January – further lack of sleep, late night around 11pm, in bed grabbed my husband’s arm, he looked at me and knew what was coming. Found myself on the floor, had a grand mal for about 1 minute, felt sick but did not vomit, had bit my tongue and wet myself again. No ambulance this time, my husband and son decided to manage at home (im glad). Was put on lamotragine started on 25mg daily for 2 weeks titrated up to 50mg and got awful side effects, terrible muscle pain, joint pain, felt like Id been physically beaten up I was getting daily headaches and could not cope, triturated back down again and seeing my GP next week to see if I need to change meds. I am not a diagnosed epileptic with no driving privileges – gutted!
7the Feb – got my first period after merina has been removed, extremely heavy period , was pleased to see my period as I have not had one since having the merina fitted so its been a while. I’m hoping my hormones are returning back to normal and my cycle will return back to normal and maybe I wont have another seizure. I’m guessing my doc will want me to have another epilepsy med due to their diagnosis.
Apparently 2 fits in a 6 month period = epilepsy despite normal CT, MRI, bloods, EEG…. Not sure if it should be like this.
I suppose time will tell if it was the merina and it has only just got out of my system not that my cycle has returned or whether it is epilepsy. If I am free of seizures for the next 12 months I will put it down to the merina, if not then I guess I really am epileptic!http://merinaseizure.blogspot.co.uk
Rachel wrote at 2013-02-13 00:15:23
I had my first IUD put in at and around November 2007. I had that one replaced in December 2009 because I accidentally pulled it out. I had a seizure in my sleep in March of 2010. Throughout the summer I began to have what i would call episodes. These episodes would last a very brief time but I would completely forget things/people around me. I was diagnosed with a seizure disorder in Sept 2010 and started taking Lamictal. The lamictal made the episodes go away but I started having full blown seizures. I kept record of my seizures and noticed that they were happening around my period. One or two before and one or two after. I stopped the Lamictal in June 2012. The grand mal seizures stopped but I continued to have episodes. I recently had the IUD removed 2/7/2013. I am now waiting to see if the seizures will stop all together or if it is something else.