[ceba]

I am scheduled to have a hysterectomy with removal of my ovaries (oophorectomy) on Monday for possible endometrial cancer, which will put me into immediate menopause. I am 39 and am afraid of having a change in my seizures due to the surgery. I have nocturnal simple partial seizures and take Keppra. The seizures have been very controlled. I am unsure if I can take HRT due to some other medical issues, and I am most concerned that the lack of hormones will make my seizures worse or uncontrollable. I am finding conflicting info online about seizures becoming better or worse. Although nothing is guaranteed, I was hoping someone else had any information about what to expect regarding seizures with menopause, particularly surgical menopause, either on or off HRT. Thank you for any advice.

[Porkette]

Hi ceba,

I'm sorry to hear about the surgery and cancer I hope all goes well for you. I didn't have to have a hysterectomy but I had to have surgery done to remove a cyst on my ovarie and the seizures stayed the same. When the time came for me to go through my menopause my seizures increased. I went through my change early while I was in my mid 30's. My Epileptologist told me that women who have temporal lobe epilepsy will go through their change earlier in life and that the seizures can either increase or decrease. He told me to strictly stay away from HRT because that can mess up the body chemistry and trigger more seizures. What I found to help reduce my seizures was taking vitamin B12 once a day and as weird as it sounds eating peanuts or almonds because they have progesterone in them and that's what helps calm the nerves down. Also I was in a study where keeping the brain cooler will reduce if not stop seizures. So if you get any warnings you are going to have seizures take a cold wash cloth and put it on your face and neck by doing this it will calm the neurons down in your brain and stop the seizures. I wish you the best of luck and May God Bless You!

Sue

[Darlene]

I was around 40 when I had my hysterectomy, and I did seem to change that much afterwards. I had seizures about the same way as I had there before. My doctor put me on medication for the lack of hormones. My thoughts and prayers are with you.

Darlene

[ceba]

Thank you, Sue and Darlene, for your advice. I see my Neurologist this afternoon and hope for some clarification. I have read that Neurontin can help with hot flashes. Maybe that can be added to the Keppra.

I think people with epilepsy are the only ones who can relate to the fear of having a seizure and what I call "confidence building" that you go through to feel comfortable that the seizure will not happen. When I was a child, I had grand mal seizures. When they started up again as a teenager after some years being seizure free, it took me time to adjust and "build my confidence" that they weren't going to happen during the day time (since I only get them in my sleep). I feel like this new journey is going to require "confidence building" all over again, which makes me anxious and sad. I am sure that since I have never had seizures in the day time that it wouldn't present that way now, but I just have this great fear of having them at work, or not being able to drive. I feel like this light switch is going to go off and they are going to get worse. One time years ago a neurologist said that a time to watch for is when I go through menopause. I don't know why this doctor said that. Maybe I have built this up in my head all these years. For me, the risk of having a change in seizures creates more fear in my mind than fear of developing ovarian cancer. So I do tend to lean towards leaving in at least one ovary to see if that will help. But I hope my neurologist can allay some fears today.

Thanks again, and thank you also for your kind words and prayers. (I found out that a re-review of my pathology slides does show stage 1 endometrial cancer, so hopefully it will be taken care of with the surgery and I will not need treatments.)

[Porkette]

Hi ceba,

Take my word you can live an every day normal life with epilepsy. I have worked in public school for 25 yrs. and had both absence (petit mal) and complex partial sz. in front of the staff and students and they can't even tell.
It's up to you but I would stay away from the neurontin. When I was on the drug it caused my sz. to get worse to the point that I was having status sz. and I would be out of it for 40 min. to 3 hrs. This in turn caused more brain damage. I later found out that the drug company that makes neurontin has $240 million in lawsuits on the drug because it can cause sz. for people who have never had a sz. in their life plus the co. was doing off market labeling with the drug. Just go on line and type in "neurontin lawsuits" and you will get a bunch of info.
You mentioned that you have sz. when you are asleep this could be a myoclonic sz. which means that the sz. only happens when a person gets up in the morning or when they first go to bed. I had the that problem and my epiileptologist put me on vimpat and since then I haven't had a single sz. like that and my grand mal sz. that I was having every once in a great while have completely stopped.
My best advice to you is to start taking vitamin B12 1000 mcg. once a day or B complex vitamins. Also start going to an Epilepsy Center which are usually at University Hospitals and start seeing an Epileptologist (Dr. speacializing in epilepsy) Take my word I've seen many neuros. over the yrs. but I've gotten the best help from an Epileptologist and I've had to take the least amount of sz. meds (AED's) compared to when I saw a neurologist.
There are a lot of famous people who have epilepsy like Elton John, Prince, Alan Faneca (professional football for Arizonia Cardinals), Harriet Tubman, Boche, Edgar Allan Poe, Einstein, Van Gogh and many more.
Here's wishing you well and don't be afraid or nervous just have faith in God. Here's wishing you well and May God Bless You!

Sue

[Darlene]

ceba,

In growing up I come across with the feeling that everyone on earth would develop some sort of handicap. I was 10 when I was informed I had epilepsy, then have early in life I was able to accept and live with it. Then later on when some one would come up with something I always had listening ears and warms hands for them. My feelings are to always be there for them when in need.

Please keep us up to date. My thoughts and prayers are with you.

Darlene

[ceba]

Thank you, again, Sue and Darlene. I saw the Neurologist yesterday and he said that he cannot predict what will happen if I have my ovaries removed, but that he can treat symptoms that I may or may not have afterward. He recommended doing the most to prevent the cancer, ie. have the ovaries out, and that we can work together to deal with whatever comes up. I really like him, and have been through many neurologists in my lifetime. He is the director of an epilepsy center and it is hard to see him anymore (I always get referred to the nurse practitioner) but this time I insisted on seeing him. He gave me a prescription for the Keppra XR to keep my levels steady, as I was only taking a dose before bed. He also gave me a prescription for Xanax as needed and for Rozarem, which I took before, to help me in case I have trouble sleeping. I think I am armed right now to face whatever it is that comes up initially. I have decided to go ahead with removing the ovaries, as I think I will worry so much about cancer developing there, and there are really no ideal ways to screen for that and symptoms only show up when it is advanced stage. I figure all epileptic women eventually go through menopause, so it shouldn't be a mystery, and I will simply deal with whatever comes up. At least I have the neurologist in the loop and can call him as needed. I really have a great team of doctors (pretty much one in every specialty) and I have faith in God. So I am hoping for the best!!!

Sue - I have been taking a B complex, but not with 1000 B12. Is that a standard dose? Should I add another B12 supplement?

Darlene - I also have always felt that everyone has something to deal with - it just might take some longer than others to have it happen. I also remind myself that you can never be sure what is going on in someone's life. I started having GM seizures at age 5 and was not told what was wrong with me, as back in the early 70's the doctor told my parents not to tell anyone, I guess from the stigma associated with epilepsy. It wasn't until I was around 12 that my parents told me, because I happened to take a book out of the library about a child with epilepsy, and my parents were curious about why I picked the book. That opened up the dialogue. So much made sense to me at that point - the pills I had to take (phenobarb), the EEGs, the strange sensations (auras and seizures) and the times I woke up in the ER. Then ironically at age 13, I started up with GM seizures again. I developed anxiety and was afraid to have seizures in public, even though they only occurred in my sleep. It was really scary and took a lot of confidence building to go to school and get past my anxiety. I have been lucky that my last GM was at 13, but at 27 or so I started with simple partials in my sleep. I do think that having to deal with this at such a young age has made me compassionate towards others, and a good listener. I know God watches over me, as I have been very blessed in my life. So I am going to have my surgery on Monday and will take it from there!

Thanks again to you both for your kind words and advice!

[Porkette]

Hi ceba,

My prayers are with you that your surgery goes well for you on Monday!
I started having sz. at age 10 and I'm almost 49 now. I understand how you feel building the confidence and being nervous around others. In regards to the B12 vitiamins 1000 mcg. once a day is what adults take. I'm glad the keppra is working well for you because it increased my sz. when I was on it but everyones different when it comes to sz. meds. I did want to tell you that if you have TLE (temporal lobe epilepsy) it is very common for a woman to go through menopause much earlier in life. I know when I had the surgery you are going to have it didn't bother me at all my sz. were still the same. Here's wishing you well and May God Bless You & Be With You!

Sue

[ceba]

Thank you, Sue, for your kind words. I appreciate it!

[ceba]

I am 9 days post-op and healing very well. So far no change in seizures. I was supposed to start the Keppra XR but the pills are too large for me to swallow so my Neurologist switched me from taking a single dose of 750 mg at night to taking 250 mg in the morning and 500 mg at bedtime. Today is my first day on this regimen. I get my final pathology on Tuesday and am hoping I don't need any further treatments.