Weaning off Phenytoil (Dilantin): Has anyone successfuly done this??

[Topcat]

I haven't driven for 14 years it sucks & can't swim or ride a bike a lot changes but hey I don't have to work

 

[Clover]

GBM brain Cancer 2011, three years Cancer free and no treatments. Have been on Dilantin since, and I'm wanting to get off! Doctor is telling me this is not an option due to the negative repercussions. I have only seen one or two people talk about this happening, and they basically did it alone. I did find medical research (will share with my doctor) stating that it is possible with the right 'program'. ALSO, have any women out there had a healthy child while using Dilantin? I am on a fairly low dose. Sadly for my doctor, I am not giving up on this. The long term effects of this medication is not good and frankly a little frightening. PLEASE HELP... any replies would be helpful. THANK YOU :comp:

Hello! My options for getting off Dilantin (not entirely) are either Lamictal OR Kepra. Both state that the drugs can affect a baby so I would still prefer to get off entirely. Am I just being selfish, and should appreciate the fact that I am healthy and Cancer free? When I started working on the idea of this NOT happening, I noticed that I no longer wanted to look at other people's babies or take joy in someone getting pregnant. Bitter! That makes me sad. Seems just anyone can have a baby (clearly), those with no money, no partner, drug users, criminals etc. etc. etc. UGH I just feel this is not fair (and yes being a baby). I'm becoming very negative and wonder about the meaning of my life now. Big sob story I know, but this is how I'm feeling unfortunately. I may end up needed to speak to a professional, which is going to help me with leading a life without a child due to an asshole Cancer tumour?! I can't see much happiness in my future at this point... while I was usually the most positive person I know lol. UGH I am not suicidal but it scares my that these feelings can get worse. Getting off topic!!! I am still searching for a woman who had a healthy child while using these medications.... not sure it will ever happen. Have been looking on other sites too :/ Thanks for reading, any of you out there!!

 

[Topcat]

I ask once again: can you get a new Dr.? Or at least a 2nd opinion from a new Dr.?

 

[Nakamova]

My options for getting off Dilantin (not entirely) are either Lamictal OR Kepra. Both state that the drugs can affect a baby so I would still prefer to get off entirely.

While there are risks related to pregnancy on Lamictal they are very low, fractionally higher than in populations NOT taking Lamictal. See:
https://www.epilepsysociety.org.uk/...pregnancy-says-study-08-04-20161#.WcgcbiMrJDM

Still, if you would prefer to not to be on any meds, best to do so under doctor's supervision, and ideally with a fair amount of time so you can evaluate how you are doing before considering pregnancy. As Topcat suggests, it's worth finding a doctor who will collaborate with you and help you evaluate all your options. If you can't immediately find a neuro who will help, consider consulting your OB-GYN.

I may end up needed to speak to a professional, which is going to help me with leading a life without a child due to an asshole Cancer tumour?!

I understand that it isn't for everyone, but have you considered adoption? Plenty of terrific kids out there looking for loving parents.

 

[Clover]

Many thanks for your reply! I will check out the link you shared...
I have spoken to my doctor but we haven't made any 'moves' just yet.
We have thought of adoption, but the costs are astronomical here in Canada (as likely everywhere) and it seems odd to go into debt for it before even starting your family. I don't know that much about it but that's the part that makes it unappealing unfortunately. With fostering, there is a whole other set of reasons that we haven't hopped on yet as well. I guess we will figure out regardless Thank you again for sharing!

 

[Nakamova]

You may find this link helpful:
http://www.coping-with-epilepsy.com/forums/f42/if-youre-thinking-getting-pregnant-9721/

Also, one of our current members, Cint, had two healthy babies while on Dilantin. You could PM her if you had any questions: http://www.coping-with-epilepsy.com/forums/members/cint/

 

[Sabbo]

I also had my sons while taking Dilantin, and both are healthy. During my first pregnancy, Dilantin was the only AED I was taking, as I only had simple partial seizures at that time. My dose was 340mg/day, & my doctors raised my folic acid dose from 1mg to 4mg/day.
Because I had started having complex partials about 6 or 7 years earlier, I was also taking Topamax during my second pregnancy. My dosage of that was (& is) 400mg/day.

 

[Clover]

Thank you Nakamova!! I am so very happy for her. I think I'm heading over to Lamictal as soon as possible as I understand it will take time to ween off. Either way, that is very promising and I appreciate your reply and link to your friend.

 

[Clover]

Thank you Sabbo!! Another beautiful and positive story, and I appreciate you sharing. I am finally getting some answers from people who have experienced childbirth on these meds and feeling better about it. I'm planning to switch to Lamictal and hoping there has been enough trials and research to trust it... makes me a bit nervous lol. Thank you again and I will you a great week!!