It’s been eight months since my last entry about my focal aware seizures. You might think that would be because I got better.
You would be wrong.
Actually, in some ways I am better. The focal aware seizures continue to diminish in frequency and severity.
But now, we are in the early days of a global pandemic.
Jeff and I are self-isolating, and I am weaning off Effexor, which I’ve taken for 20 years, since my primary doctor at that time prescribed it because I was sad that my father was dying. There was never a pill Dr. MyGal didn’t push. I saw her for nearly 15 years, broken by our seven years back in DC. I broke up with her when I was diagnosed with breast cancer in 2014. She let her tech tell me and never reached out to me again. I wasn’t going to be the one to make the first move. So that break was abrupt and final.
But as for the seizures, we left our sturdy little patient in November, about to go to a full dosage of allergy shots, as well as taking a slew of other drugs and over the counter meds for the seizures, and laden with a boatload of anxiety.
However, I need to finish the story of the attempt to stop my seizures. For the record, I tried Keppra twice under Dr. K, the madman, then when I went to Vanderbilt tried Vimbat and finally Breviact, each time having severe rash and facial redness and swelling.
So he released me to muddle along by myself.
Here’s some of the back and forth around that:
ME: 1/22/20 to Dr. Jolly, the epilepsy neurologist
I know we haven’t been in touch for a while, and I’m wondering if I have missed an appointment. However, the immediate issue is that I was referred by my primary to another Heritage provider to see if she could prescribe something other than Xanax for my anxiety, which I think is a side-effect of my focal aware seizures. I left thinking she was going to prescribe an extended release anti-anxiety drug that was not addictive, like Xanax, which I only take occasionally when the anxiety is very bad. I picked up the drug and it is Clobazam, Onfi. The insert indicates this is another anti-seizure drug and the side effects are similar to those of the four anti-seizure drugs I’ve already tried and had bad side-effects from. I am just now calming down from the Breviact and do not want to take another. In fact, I think the consensus from you and Dr. Jolly is that I may not be able to tolerate the available drugs. I’m running this by you because it alarms me and my calls to Dr. F’s office have elicited the response that this is what she thinks I should try. You all are my epilepsy doctors and I will not take anything for the FAS unless you sign off or preferably prescribe it yourselves. What’s your take on this? And do I have an upcoming appointment?
DR JOLLY: Hi Ms. Phillips, you are correct that we sometimes use clobazam to treat epilepsy, but it is a similar compound to xanax, so if you have done okay with xanax, I think it would be worth giving it a try as it could have the added benefit of helping to prevent seizures. I do not see a follow-up appointment scheduled, but would be happy to help get one set up for you.
ME: Thanks! I think I’m OK without an appointment for the time being. How often should I check in in person?
Jolly: Since we are not prescribing any medication at this time, we can leave it as needed. Please feel free to continue to update me and we can get you scheduled in clinic when needed.
In other words, have a nice life.
But before that, here’s the back and forth over the last attempt to control my seizure with drugs.
October, 8, 2019
ME: Following up on our last conversation. I have been at two a day with the Breviact now since Friday, one at night and one in the morning, close to 8:00 at each end of the day. Today for the first time I have not had a seizure. So I’m thinking it may be getting to the saturation level it needs to stop them. I am however having a flare up of my eczema, on my hands and my neck. I went for my allergy shot today and they decided to hold it for a week just in case this was a reaction to the Breviact. The allergist was there and looked at it and said it looks like eczema but she just wanted to be on the safe side. I see my dermatologist tomorrow for a routine appointment and will ask her as well what she thinks. I will let you know.
Tell me if you think the rash is something alarming. The only other side effect I’m noticing is that I’m sleepy. The lightheadedness is fading and actually could be a side effect of Plavix, which I started after seeing the stroke neurologist a couple of months ago.
Response from Dr. Jolly’s PA: Thank you for the update. It does not sound like a drug reaction and Briviact does not commonly cause rashes but please let me know what your dermatologist says or if the rash worsens.
ME: 10/17/19: Following up on the rash issue, I saw both my allergist and my dermatologist last week and they both thought the rash was eczema. I got some new ointment and started using it but I also found two reliable sites on drug side effects that said a common side effect of Plavix is eczema, itching, rash. I have been taking Plavix since August without incident but I felt that the Breviact might be interacting with the Plavix. Got in touch with Dr O’Hell’s office and told them I was stopping the Plavix for a few days because of the rash and also the bruising I’ve been having with it since I started. The rash almost immediately started to improve. Then last Friday Oct 11, I slammed the car door on my finger, which required seven stitches. In the hour and a half between the accident and the end of the stitching process my finger never really stopped bleeding. I have not restarted the Plavix and when I do I will take a dose every other day, on Dr. Peaceful’s suggestion (Dr. O’Hell’s fellow). The rash is almost gone but my scalp still itches. Still having a mild seizure about once a day.
PA: Hi Lyda, Thank you for the update regarding Plavix and the rash. Since you are still having small seizures, let’s try increasing the Briviact. You are still on a low dose. Let’s increase to 50 mg in AM and 100 mg in PM x 1 week and then to 100 mg twice daily. I will send over a new script with 100 mg tablets. Please let me know if you have any questions or concerns.
I tried refilling the script and found it wasn’t covered by Medicare and would cost me a couple of hundred dollars for each refill.
10/22: PA: I would love to talk to you about these things further by phone. I tried to give you a call but missed you. I understand the burden of copay cost. Did our pharmacist reach out to you to discuss options? I had already sent the script prior to seeing your message but you do not need to pick it up if you don’t want. We can continue at current dose for now. Briviact should not impact stroke risk. Please let me know if you would like to discuss further and give him a good time to call you back.
I called and emailed her a few times after this exchange, but she seemed to have vanished from the face of the earth.
So I muddled along with Dr. Wildebeast until January 2020 when the above exchange with Dr. Jolly took place. At that point, I couldn’t take a dose strong enough to help control the seizures. I was taking nothing for them, and they were no worse than when I was taking the drugs.
I came to the conclusion I could live with the fits but not the pharmacological treatments.
My allergist suggested I try Vanderbilt’s Osher Clinic for Integrated Medicine. I thought that was a good idea since there is peer-reviewed evidence that meditation and other relaxation techniques, like certain kinds of yoga, are effective in reducing seizures. These studies are not robust, some aren’t double blind, and the sample sizes are small. But the treatment is recognized by competent medical sources as worth exploring.
I called and set up an intake appointment.
Then the world upended.
In February we began to hear of a pandemic in China. I had just received my first shipment of hand sanitizing wipes in early March when we took a direct hit from an EF3 tornado at 1 a.m. March 3.
When our power was restored on March 12, we found that the world had changed. I believe it will never be quite the same.
Still I am soldiering on now at the Osher Clinic, but still haven’t taken a single yoga or meditation class.
2020 reading list:
- The World Below, Susan Miller