jeanhelen Posted August 1, 2014 Share Posted August 1, 2014 I have not been on here for a very long time but am very glad to see the site is still being used effectively. Since my original craniotomy for a ruptured aneurysm in 2011, I have Secondary Epilepsy but have not been able to find information about others in this situation. Very few people develop this condition so I am willing to share my own experiences with anyone in a similar situation. The SAH operation was successful although I had a second operation in 2013 to re-clip the aneurysm because there was a residual aneurysm which was "filling" below the original clip . Fortunately, because this was planned and not emergency surgery, recovery was much, much easier than the first time. Personally, I loathe the term "fits" and prefer to use "seizures". I had several of them while I was in ICU after the first op but didn't have another until just over 3 months later although I was on phenytoin which is meant to prevent them. Since then, I have had several more, mostly 3-4 months apart but sometimes within a day or week of the previous one. Medication has been changed twice and the dosage increased but they still happen. This is difficult to live with, especially since I still have various cognitive difficulties. In summary, if epilepsy is the price of successful SAH treatment, I am glad I am still around to know about it and still physically able to live on my own though my son and my partner do give me a lot of emotional and practical support for things like shopping or travelling. DO remember that the risk of follow-on epilepsy is LOW. Jean Link to comment Share on other sites More sharing options...
Winb143 Posted August 1, 2014 Share Posted August 1, 2014 Hi Jean, I also have seizures but had them since puberty but after my SAH my seizures got worse, I shook harder does that make sense? I was on epanutin/phenotoyin and the old fashioned ones phenobarbitone.I was always okay on phenobarb but my Doc decided to give me Epanutin also. They made my gums shrink and my teeth started to become loose so I was told to stop them. While in hospital they took me off of Epanutin and put me on Keppra and lowered my phenobarbitone, I was bad when they done this, I told my Doctor all I do is sleep with keppra and can I down the dose he said No. grrr I wish you good luck and hope you find the right medication for you as it is frightening when you sense one coming on. Be Well WinB143 xx Link to comment Share on other sites More sharing options...
jeanhelen Posted August 2, 2014 Author Share Posted August 2, 2014 Morning Win, I am so glad you have replied, it helps to know I'm not the only one! I expect your condition getting worse is just as worrying as having it start and I know exactly what you mean about 'worse'. I was on Epanutin(Phenytoin) for almost a year before they tried to change it to Carbamazepine but took me off that PDQ suspecting it caused the next 2 seizures just after I started it. Then I changed to Lamotrigine which is now at the maximum recommended dose. I've been told that they will add Epilim if I have another seizure. This search for the perfect dosage seems endless but my GP has told me the aim is NO seizures and that I'd need to be OK for 2 years before they would consider reducing the dosage. My GP is very supportive so I'm a bit surprised yours isn't more so. I often get what I call the wobbles and it is very frightening but seldom becomes a full-on seizure. Sometimes I think I might be on too high a dose, so I'm hoping I can convince him to let me try reducing it a bit. Thanks again for sharing your experience Jean Link to comment Share on other sites More sharing options...
Winb143 Posted August 2, 2014 Share Posted August 2, 2014 Thanks for replying Jean, We will overcome it I was doing so well also, keep well and let nothing get you down. Now go out and smile xx oh and singing helps lol xx Love WinB143 been 4 years since my last seizure and my Doc still wont down them. grrr Link to comment Share on other sites More sharing options...
Clara mac Posted June 12, 2018 Share Posted June 12, 2018 Sorry I've not been around for a while but I'm now diagnosed with epilepsy Because of the sah . It's rubbish but a small price to pay for being alive Link to comment Share on other sites More sharing options...
Winb143 Posted June 16, 2018 Share Posted June 16, 2018 As I said to JeanHelen, Clara, We need to think happy thoughts, hard but good for us xxxx May your Seizures be small ones xxxx Link to comment Share on other sites More sharing options...
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