Unexpected Medical Changes

[wannalise 16]

Well I am three years post op and so grateful for this journey. Having lost the weight increased my fertility dramatically, and allowed me to conceive and give birth to a healthy beautiful boy. However, the strangest side effect has come with my epilepsy. Medications that once managed my seizure symptoms are no more. I have been working with a neurologist for 2.5 years trying to find the magic combo. Taking way more than I had to at 320 lbs (I am at 160 now) the best guess that my medical professionals have. I once had a fatty inefficient liver. I no longer do. My liver is so effective that it chews up more medicine than the FDA's maximum dosages. I am so grateful for the changes I have made. I have so much joy in this body. But my epilepsy before was not even a part of my life. I went for a decade with no seizures. I had friends who had no idea this had even been a part of my life. Now I am unable to get up in the night with my small fry and my husband has graciously taken that role. I am often dizzy, or disoriented from the high doses of medicaion. Yet I still often feel on the verge of a seizure. Its hard to know what to wish for.

[Supersweetums 1,164]

That would be so frustrating. Do they think it is related to the weight loss?? I can't say that health wise anything has changed for me. I had no health problems when I had the surgery (which was a big reason I wanted to have it done since there are many in my family). My brother has epilepsy and seems to develop tolerances to certain medications, and then has to switch new ones. Good luck with journey at trying to find something that works.

[ProudGrammy 8,322]

strangest side effect has come with my epilepsy. Medications that once managed my seizure symptoms are no moret I still

wannalise

i am so very sorry and confused at the same time for what you are dealing with

i totally understand what you are dealing with, and i hope you and your neurologist get this figured out/get control, very, very soon

we are "sisters" - when i turned 16, (43 years ago) i became aware of my epilepsy

i have been "controlled" all these years - with a couple of exceptions due to medicine changes

my NSV - after i had lost about 50 lbs - we realized that due to my extreme weight loss, i now needed LESS medicine (keppra & lametcal)

unfortunately we found this out the hard way - when i had an "unexpected" side effect

I became very "dilusional" after knee replacement surgery 3 months PO WLS

had to stay in hospital 3 extra days til they could figure out and deal with the prob - getting the right dosage for me

I now take 1/2 the dosage that i took before WLS - this is huge for me

i hope you and your neurologist get this figured out very soon!!!!!

losing 160 lbs - you have done amazing

i wish the best for you

take care my friend

[wannalise 16]

Thank you so much. I had hoped that weight loss would mean that I would need less medication too, but I am double the medication I was at my full dosage. I am trying to be patient, and may need to visit with a new neurologist as we just aren't finding what I need with my current doctor. I genuinely believe that there is purpose in all we experience, but want desperately to feel like myself and have the energy it takes to be the type of mom I have always hoped I'd be.

[Puja 148]

Wannalise, I am sorry to hear about this! Proudgrammy brings up an interesting point about her dosage... the side effects from too high of a dose can also affect multiple aspects of your physiology (including sleep), which can trigger episodes if lack of sleep is an instigating factor for you.

Most epileptic meds are metabolized by the liver, and higher doses can actually induce further metabolism. Perhaps your doctor can try to combine the medication with something that slows down its clearance.

This topic is always brought up in these forums, but how are your electrolytes? Imbalances combined with insufficient sleep, added to the stress of pending attacks, sounds like the perfect recipe for a seizure.

Good luck to you!

[TES 858]

Have you ever heard of a technique to treat epilepsy called brain mapping? Cleveland Clinic does it and I'm sure some other major institutions do too. You might want to check with your neurologist to see if you might be a candidate. It's minimally invasive robotic surgery.

[Fiddleman 4,376]

Have you ever heard of a technique to treat epilepsy called brain mapping? Cleveland Clinic does it and I'm sure some other major institutions do too. You might want to check with your neurologist to see if you might be a candidate. It's minimally invasive robotic surgery.

That is really a fascinating suggestion regarding the brain mapping. Now I must go consult Wikipedia to see what entails brain mapping. This curiosity is going to get the best of me.

[lilac lass 34]

Well I am three years post op and so grateful for this journey. Having lost the weight increased my fertility dramatically, and allowed me to conceive and give birth to a healthy beautiful boy. However, the strangest side effect has come with my epilepsy. Medications that once managed my seizure symptoms are no more. I have been working with a neurologist for 2.5 years trying to find the magic combo. Taking way more than I had to at 320 lbs (I am at 160 now) the best guess that my medical professionals have. I once had a fatty inefficient liver. I no longer do. My liver is so effective that it chews up more medicine than the FDA's maximum dosages. I am so grateful for the changes I have made. I have so much joy in this body. But my epilepsy before was not even a part of my life. I went for a decade with no seizures. I had friends who had no idea this had even been a part of my life. Now I am unable to get up in the night with my small fry and my husband has graciously taken that role. I am often dizzy, or disoriented from the high doses of medicaion. Yet I still often feel on the verge of a seizure. Its hard to know what to wish for.

I love this new forum but am a few days short of being here. But I just had to write to you. Has any of your neurologists mentioned VNS (Vagus nerve stimulator)? It might be an option to consider. It is a surgery but it is a process that takes time to find the setting that could help you. If it does work for you, it can be great! It isn't brain surgery but a small device put in the chest, like a pacemaker. There are wires that go to a nerve that leads to the brain. It is set to send a charge at certain times and at a certain amount. You are given a magnet that you can trigger a charge if you feel a seizure coming on. Doctors can change the settings with a machine in their office. It could allow you to have a lower dose of medications. Ask your doctor about it!

[Ms skinniness 3,003]

I have found that I have a different reactions to pain medications now. Before surgery I could take medications with codeine in them with no side effects. When I went to Las Vegas I took 2 Tylenol w/ Cod # 3's and my. Stomach started spasming. Went to see my PCP and he thought that it was a generic formulation that gave me a side effect. So he prescribed Tylenol # 4. I took only 1 tablet. Well I had some pain so I ate 1/4th of a Protein Bar. Well within 10 to 20 minutes my stomach started spasming and my lower intestines started spasming too. I barely made it to the bathroom and sat down on the toilet then I passed out. My daughter helped me get up while I was vomiting and had a horrible diarrhea (sorry tmi) at the same time. I ended up dehydrated and weak the next day. I don't know what I'm going to do if I need pain meds. This. Is really scarcely. I hav e always had a strong stomach with no reactions to pain medications. So this is my new life. But it's still all worth it.