I have lived with Epilepsy all my life, and have had to learn all about it. I had to understand it. I had to accept it. I had to live with it. I lived in three different countries with different views from all the different Neurologists and their school of thought. So I can tell you this, if you do not like what you hear from one Neurologist, you can change and get the opinion from a second, third or forth or until you find one you feel comfortable with.
As a child:
I have suffered Epilepsy since I was 9. I had full Grand Mal epiIepsy. Siezures lasted for five minutes, and afterwards I would have very little idea of what was happening. lived in Venezuela. In those times the medications were not as developed as they are today. This meant it took about 1 year find the appropriate dose of barbiturates and phenytoin that would not knock me out all day, and at the same time keep me from convulsing. Keeping to a routine of three intakes a day was hard for a child, let alone the prospect I would be doing it for life! Why me, as with every child I only wanted to fit in. Convulsions during that period were more related to creating the appropriate medication levels in blood, which meant regular visits to the Lab to give blood samples, good thing I have never been afraid of needles!
As a teenager:
When I became a teenager it was another story, I was expected to be responsible of my own medication intake, and as any teenager I rebelled against drug intake, consequence: convulsions!
As a young adult:
By now I had moved to live in Spain. I grew up and was a young adult, I calmed down a bit, but taking barbiturates meant I was not allowed to drink, or smoke, or do any of those things my friends seem to do without any trouble. I was not even allowed to party all night, as skipping a night’s sleep was contraindicated for epileptics!! AAAAARRGHHHHH. That was hard but I understood that barbiturates + alcohol = death or brain damage and I did not want any them. Now taking my medication was such part of my routine it became automatic to the point I would not remember if I have taken it or not. I slightly overdosed a couple of times (taking my night dose twice in a night) and others I would forget to take it, consequence: convulsions!
I fell in love:
With The One and moved to England start a life with him. Still on barbiturates and phenytoin as none of my Neurologists wanted to change my medicine even though they knew the new medications on the market had fewer side effects, they all said barbiturates created such a dependency and I had taken them for so long that they where afraid it might affect me negatively. Also Neurologists in Vzla and Spain gave me a rotund NO to the possibility of ever being able to drive.
As part of a couple talk of starting a family began, but we did not only have to consider the economics, emotional involvement, the responsibility and all the other things couples talk about when having a baby, we also had to talk of my medication as I could not possibly get pregnant while taking barbiturates and phenytoin! So I talked to my GP (general practitioner).
Coming out of medication:
The day I decided I wanted to get ready for a family I went to my GP. I lived in London and in the UK. If you want to see a specialist through the NHS you need to be referred by your GP. If you have money you can go private, but at that point I was at university as student and by definition did not have a penny! So, the waiting list of a Neurologist is of 6 months which I was not prepared to wait. I asked him (GP) what were the chances of us organizing withdrawal from my medication. I had been two years without convulsions and as far as he knew that was ok. So we devised a gradual cut of medication. The process took about 6 months as we thought of doing it as slowly as possible. This was a tough process; it was very similar to what is known in the world of drug addiction as cold turkey or abstinence syndrome. My hands would shake more than normal, there were days I found it hard to breath, I would wake up in cold sweat, I find it very hard to fall asleep but then it was even worse! I so much needed my medication to relax and go to sleep. It was very hard, I even stopped dreaming for some weeks and that is very tiring. I still would like some nights to be able to have one of those pills. They did relax me and helped me to sleep, but no, no more.
No longer on medication, one day we got pregnant, started visiting the midwife, and because of my history of epilepsy I also had to see a neurologist, this time seeing her was faster, obviously! She could not believe what I had done; she thought it was just not possible. She said no Neurologist would have even tried taking me out of barbiturates after so many years on it (remember I had been taking them since age 9, for over 20 years). If the GP or I would have known how hard the dependency was we would not have done it. I say, I am glad my doctor didn't know as even if I did, I still would have wanted to come off. I was ready.
After a very long labour I gave birth to a beautiful baby girl at 12 midnight. After that I was taken with my baby and left there to deal with her, exhausted. A day later I was discharged and sent home. Two hours later I had my first convulsion in 4 years. My baby and I where taken back to maternity and as they were laying me in bed I had a second one. When I woke up in hospital I was devastated, not again, I can't possibly go back to a life of medication. I stayed in hospital for a week and was put on clobazam.
Medication and babies:
While in hospital I was on medication. During that week I was not allowed to breast feed so pumped as much as I could to keep my breasts working. When I went home I was put on a minimal amount for a period of a couple of months. I had to find out about this medication, start all over again, but now with the pressure from all sides that breastfeeding was bad for my baby, even though all the information I could gather told me the opposite. It was a very stressful and lonely period of my life. I seemed to be the only one who believed I was not harming my baby. Months later speaking to the Neurologist she told me I was right. The amounts I was on would not have affected my baby. AAAARGGGHHHHHHHH!!! Life can be unfair! Well maybe, as my now husband was told. I was not allowed to do any night feeds, so he did all night feeds still went to work.
My daughter is now 6 and I have not had a fit since that day nor am on medication. But Epilepsy is still very much part of my life. I can not work late (later than 11pm), I still can not disrupt my sleeping patterns, I have to have a eating routine as it is not good to skip meals (I do not know why this is), I still need to be careful and not drink too much alcohol, I have yet to try illegal drugs as I am scared that if I try any specially the hallucinatory and the ones that excite your Nervous system they might cause havoc with my brain, I am still very careful when crossing the road or when I go out with my daughter unaccompanied. I think Epilepsy has become a way of life.
To this day we don't known what was the cause or what are the specific triggers. I only knew I had two focus points, one in my frontal lobe and one in my temporal lobe. The way they worked was: the frontal lobe point gets irritated, it will send a signal to the temporal lobe and from there it would short circuit my hole brain.
Sometimes I still rebel against its barriers.
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