Recently diagnosed w/focal seizures & have breast cancer

@lluedke
I am so sorry to hear! You must be scared. How were you diagnosed with epilepsy? Did they do a MRI of your brain?

How long ago were you diagnosed? Have you had surgery and started chemotherapy?

My hope and prayer is you have a support system of family and friends to help you.

@lluedke
I want to share my experience living with epilepsy for the past 59 years, which has included absence, focal aware, focal impaired, tonic-clonic seizures, and even status epilepticus. Throughout this journey, I’ve relied on opioids for pain management. I understand the concerns about pain medications potentially lowering the seizure threshold, but it’s important to note that this isn’t the case for everyone. Personally, I used the Fentanyl Patch for a number of years without experiencing an increase in the frequency or severity of my seizures.

I’m curious about the reasoning behind the decision to discontinue pain medication. None of my doctors ever suggested we stop my pain management plan, and I appreciate how crucial it is to find the right balance.

Take care,
Jake

I was diagnosed after having dizzy spells for a week. I assumed it was due to my cancer. That all changed when I woke up in the morning and could not gain my balance and slammed into the wall. It progressed to halo headaches and nausea. Mentioned all of my symptoms to my oncologist. During an mri of my brain they found an issue and I went to see a neurologist. After ct scan, another mri, spinal tap, and EEG they determined it was epilepsy. The EEG was the last test done on May 9.
I was diagnosed with metastatic breast cancer in March 2018. No chemo or radiation. I take Ibrance 100 mg and Letrozole daily. The only surgery I had was to my spine in an effort to stabilize what the metastatic tumors destroyed.
After the cancer diagnosis my family and I made the decision to move into a home together.

My oncologist made the decision to stop using hydrocodone while on Keppra. The metastatic breast cancer spread to my spine and made L2 - L5 vertebrate a mess.
I have been using Rick Simpson Oil (medical cannabis) on a daily basis since 2019 , but for the severe pain my go to was hydrocodone. Neither my oncologist or neurologist mentioned anything about a fentanyl patch.
I was unaware that the epilepsy could progress through all the stages you mentioned.

@lluedke
Did you also have MRI of your cervical and thoracic spine? Did they need to fuse your spine or put in hardware? Any compression of spinal cord/nerve roots can make balance an issue.

Were they able to confirm on your brain MRI that there is no spread there that is causing the seizures? You really want to be careful not doing anything alone where you could have a seizure and have difficulty breathing (swimming, taking a bath, being in a hot tub), driving and walking near where you could fall (like at the top of a flight of stairs).

Be very careful with fentanyl pain patches. There can be problems with them and people have overdosed because the medication was absorbed too quickly.

Where is your biggest location of pain? Have you had any steroid injections for inflammation? Have you tried any muscle relaxers? There is a medication that treats bone pain that is not an opioid (Suzetrigine/Journavx). Have you had this mentioned as an option?

1. https://www.mdanderson.org/cancerwise/6-pain-management-options-for-cancer-patients-you-might-not-know.h00-159306201.html
2. https://www.cancercenter.com/community/blog/2020/08/cancer-and-bone-pain
3. https://www.medicalnewstoday.com/articles/bone-cancer-pain-relief
4. https://www.drugs.com/keppra.html
5. https://www.cancer.org/cancer/managing-cancer/side-effects/pain/cancer-pain/non-opioids-and-other-drugs-to-treat-cancer-pain.html