To date I have had no further seizures
This morning, 17th January, the Epilepsy Nurse phoned to enquire about the drugs I am currently taking. Fortunately I did not answer the phone so my husband told her all she needed to know about dosage and the seizure I had.
The nurse mentioned today about the drug I have completely withdrawn from and my husband explained that after taking just a half in December it had zonked me out.
I am not quite sure on this but I have the feeling the Nurse wanted me to go back on them Whether it is because they are cheaper than the ones I have been forced to increase or not I do not know. What I do know is that I had surgery in order to cease taking the Mysolin due to its long term side effects of disorientation. This did occur especially when I was looking up and moving. For instance hanging washing on the line had reached the stage of needing to hang onto the line whilst do this chore. Other times too when walking along the unsteadiness occurred on occasion.
My husband explained that they said it was life-threatening for me now having this new form of seizure. Well they have always been thus because any form of black out can cause fatal injuries, so I cannot see the difference.
I assume then that they wish to me return to being a zombie with the fits 'controlled' and not die. Well drugs do not fully control temporal lobe epilepsy for a start. The other thing is that I would rather live my life being aware of everything around me and be quicker and more alert rather than be a zombie, going around doing everything at a snail’s pace and at the same time not experiencing the wonders of life, just in order to maybe NOT die.
Sorry, that is my opinion. If I had never experienced this new life then it would be different because you cannot miss what you have never had.
The reason for my not speaking to this Nurse all began when she phoned me out of the blue many years ago to find out whether I needed advice. I guess it was part of her remit to do this but having suffered seizures for over 40 years, at that point, I could not really see that I warranted help. There is nothing anyone could do for me after all this time at the end of a telephone and I pointed this out. I heard no more from her then until after surgery and she made me feel like an abject failure for not being able to do more than I was actually able to do at the time of her phoning.
She said that they expected me to be doing much more and believe me I wished I could but circumstances at the time prohibited me do a great deal. It was upsetting enough not being able to do simple things like bending over of lifting things and just things you take for granted until you are physically unable to do.
She then advised me to have thalasotherapy to help ease my back which felt fused at this point due to the lumber punctures they had carried out during second surgery. What she failed to understand was that I could not get out of the house unaccompanied because my balance was totally affected due to the problem with the eyes not focussing together. The other thing was that I kept going light headed when walking along so needed someone to hang onto when this occured.
The nurse had probably not read the notes of the full surgical experience and maybe just thought it was a straight forward recovery which is why she thought I was slacking. Anyway, after speaking to people at the hospital she was mortified but only because she had not been fully informed of my progress. In fact she was most remonstrative with a friend of mine who worked at the hospital and knew all the ins and outs.
I had not heard from her from that day to this because another nurse contacted me about two months after the original nurse had. The second nurse was fully clued up on the case so made no judgements about my progress.
Well that is how things stand at present and I have had no more seizures so will not increase the medication any further than at present. In my opinion there is not a need as things have levelled off again because after all is said and done, drugs do not control temporal lobe epilepsy fully anyway.
