CAPD & Epilepsy

[Dora86]

Hi,

I have epilepsy and CKD stage 5, in the U.K. transplants are on hold because of covid-19. I have been put on CAPD as temporary measure as egfr is 9! I have noticed that when I’m on my second or third drain my epilepsy comes on I go blank and I struggle to think. Apparently there is no known link between the two. I was wondering if anyone has had the same or similar?

[Darlenia]

Thank you for reaching out. I'm not sure if many on this forum have the same medical condition (epilepsy) that you have while undergoing CAPD. However, I would definitely discuss your situation with your care team (nephrologist/neurologist). While I'm not a medical person, dialysis apparently can upset electrolytes and more; individuals can experience restless legs, dizziness, and our neurological issues. I'm optimistic there may be a solution to help with your problem. Please advocate for yourself...we care.

[Dora86 in reply to Darlenia]

Hi,

Thank you so much for your reply. I have been keeping a diary to see if there is a pattern. My doctor asked the epilepsy pharmacist and apparently there is no known link. Thank you for saying about the restless legs as I wasn’t what that was to do with. I’m sure I will find a solution I’m reluctant to change my cocktail of medicines as up until now they have worked for me. Thank you for your advice. Look after yourself.

[Kbristow]

Hi Dora86, I'm sorry you're going through this. I imagine a sudden change in blood pressure may sometimes trigger an episode in epilepsy patients undergoing hemodialysis but I find it interesting that it's happening on peritoneal dialysis since the change is much more gradual. What are your doctors saying about it? It's comforting to know that at least you are sitting or lying down when you experiencing the episode. ... You mention transplants are on hold due to Covid19. Do you have a living donor? Are you close to a transplant otherwise? some transplants are starting back up in some areas in the U.S. My transplant 4 years ago was also delayed for about a year for various reasons. I continued CAPD for that time and it did a good job of sustaining me. Best wishes to you.

[Dora86 in reply to Kbristow]

Hi,

Thank you for your reply. My doctor has asked the epilepsy pharmacist and apparently there is no known link between CAPD and epilepsy. I am very lucky that I do have a donor, if it wasn’t for COVID-19 I would be preparing to have my transplant now. I wasn’t expecting to be on CAPD so mentally really struggling with it. I have only had one blood test since starting on dialysis and that was when I had to do APD at hospital. I’m so pleased that CAPD worked for you. I feel very alone with CAPD and I feel like i am expected to know everything and do everything right when I feel like I know nothing. Look after yourself in these crazy times.

[SN23 in reply to Dora86]

Hi Dora,

I can understand how you feel. My son had to do PD too suddenly when his numbers declined and had an episode of seizure following that. And even though the nephrologist said he does not know of the connection the neurologist he then consulted (At the recommendation of the ER doctors) said that he has seen this in dialysis patients and prescribed a low dose epileptic medicine and he has not had any issues after that.

Hope you feel better and have the transplant soon.

Best wishes,