Looking back, a lot has happened in a very short time. That is very weird because months have passed since the events I described in the last entry in this absurdist drama. And it seems like a lifetime.
But in May after the last blow up from the Keppra, I asked Dr. Chile to send me to Vanderbilt. She did, immediately. I never saw Dr. K. again. I had my first appointment with Dr. (let’s call him ) Jolly, a neurologist in Vanderbilt’s Epilepsy Center, on May 15.
The first time I went to see him, I was struck by how depressing and cramped the neurology practices were, jammed into the basement of the Monroe Carrel Children’s Hospital. The small waiting room in the epilepsy center was jammed. Several of the patients waiting were experiencing seizures, the kind that present with repetitive motions or whoops. My new normal.
Two and a half months later, I know the drill at Vanderbilt. It goes like this. You wait a long time in a room filled with patients, most who seem to have come to Nashville from the deep country. They have tattoos, wear overalls or shorts. Nearly all have somebody with them, with whom they talk incessantly. When they talk, they say, “He don’t” and “I reckon.” I reckon they got good health insurance. I harken back to Flannery O’Conner.
Finally you are called in. You first see a tech who takes your weight and blood pressure then escorts you to an examining room. After a period of time alone, a young man comes in, who doesn’t look like the picture of the doctor you found on line. He introduces himself as the Dr’s “fellow,” a post-graduate position that allows a new specialist to gain experience, especially in how to do intake and analyze patients’ conditions.
So this nice young man interviewed me for at least half an hour. I told him everything. He told me nothing, except that he was soon going to a good position at Tulane. But he was listening and seemed to understand what I was saying. I was somewhat incoherent, I fear, because I was scared and also because the fits mess with my short-term memory. Leaving moth holes. Later during the visit, when the doctor was in the room, I couldn’t remember something, a medicine I’d taken or something, and I started apologizing, saying “I’m sorry, I’m sorry, I can’t remember.” And I caught him looking at me with such an expression of pity and … what, shared pain? … that I almost burst into tears. But didn’t. Not one tear.
Eventually he left, and after about 10 minutes returned with Dr. Jolly, who was a surprise to me because he looked at least 20 years older than the picture of him online, and much thinner. I now know that’s how they do at Vanderbilt. All the docs pix seem to be 20-30 years younger than the real doc. Why?
Anyway, he said he expected the diagnosis of focal aware seizures was correct but wanted to do an MRI and then a 24-hour EEG to get more information about what was going on in my brain. Imagine that. The Incredible Dr. K. was able to pronounce a diagnosis without a single test!
I asked him about Effexor, which I’ve been on since 1999, although a low dose (37.5 mg). In the past decade or so, I am getting a brain clicking that many people describe on forums in terms like “zaps” or “freezes.” Dr. Jolly said he had never heard of such a thing. And the fellow cautioned me not to read any medical websites except the Mayo Clinic and the Epilepsy Foundation.
I found a forum on the Epilepsy Foundation’s website, which discusses seizures and Effexor. But I’ve never brought it up again.
On May 21, I sent the following message to Dr. Jolly after getting my allergy shot:
Got my allergy shot this afternoon and had (for the first time) a relatively mild anaphylactic reaction–throat tight, coughing, lips slightly puffy, hands where I have eczema turned bright red. They gave me a shot of epinephrine, and I was fine after half an hour or so, but just wanted to ask whether I should take my half Vimpat dose tonight.
Yes, I would continue on the Vimpat with your dose tonight.
I had the narrow slice MRI the next day, May 22. I got the raw radiologist’s report almost immediately. And it was terrifying.
No restricted diffusion. Chronic small vessel white matter ischemic changes which also involve the brainstem. Remote right caudate lacunar infarct. Parenchymal volume loss. There may be slight asymmetric hippocampal volume loss on the right. No midline shift, hydrocephalus, or abnormal extra-axial collection. Incidental note is made of partially empty sella.
I sent the following message to my G4 friends, who I think I’ve mentioned before. My three friends from our first week as freshmen at Northwestern. With very little break we have been friends now for fifty years. In constant touch.
“I just sent that message from the neurologist to my primary and when I did I read her last message to me which was a response to the original report from radiology that scared me so much and SHE said I needed to hear from the neurologist but that it did look to her like common aging issues, which the report had blasted out of my head. So maybe I need to calm down. But I’m still going to earth for the next few days. I feel like I’m in an evil medical fun house. And I can’t trust my own body anymore. There’s more weird shit in the report but I’m still trying to get an answer on it from the neurologist.”
On June 4, I finally heard from the neurologist after a week and a half to explain what the results were and this part was just what I was afraid it was.
The MRI shows some changes that are often associated with small blood vessel blockages including the very small stroke. Typically the treatment for this is aspirin and management of other stroke risk factors, but I see that you are allergic to aspirin. I would like to refer you to a stroke neurologist to review management with you further with the goal to prevent a bigger stroke in the future. Please let me know if this is agreeable to you. If you are still having the small seizures we could try going up on the Vimpat as long as you are tolerating your current dose.
I told him the Vimpat was making me feel like shit and he said to stop it. So from that day to this my seizures are not being treated. I have one nearly every day, although I occasionally get a three or four day break. They are very mild but nevertheless horrible. A kind of sickening concentrated sense of deja vu.
Then I jumped right on to the EEG on June 25. This was the one I had dreaded and dreaded. I knew only that I had to go in, have a gazillion leads attached to my head and then go home, try to behave normally, and go back the next day to have them taken off. Sounds easy. It wasn’t, especially with my anxiety levels already through the roof.
Message to my two DC friends:
1.5 hrs to get 23 wires pasted onto my scalp. I now have a little purse holding the recorder, which is attached to a pony tail of wires wrapped in gauze connected to my head. 21 hours until I can get this contraption off. I look like Medusa.
Wendy: I think you should go to the grocery story with the medusa thing on. Or birding. Watch people get out of the way. Park in the handicapped spot and let somebody argue with you about it . . .
Me: I wish I had the balls to do that! I wonder if I can make them rise from my head and wiggle around?
After an anxious day and night hiding in my house, I went back the next day. Had them taken off. Then settled down to wait. On the third day I texted through the portal:
From: Lyda Grace Phillips
Sent: 6/28/2019 7:50 AM CDT
To: Dr Jolly
Subject: Tests, labs, or reports
Had the 24-hour EEG Tues-Wed. I know you may be backed up at reviewing the results but I wanted to let you know that I did stop the Vimpat for the test. Took one-half Monday night, and none on Tuesday. And did not have an actual seizure during the 24 hour test though I did have a couple of feelings of one coming, but it never arrived, which I did mark with the incident button.
I haven’t started taking the Vimpat again, which is what I wanted to discuss with you. I was having on average 1 or sometimes two FASs a day while I was on it, even after I went up to 1 full pill a day. And the side effects were really bothering me–fainting feeling on standing, fatigue, anxiety. I would willing to tough it out if it was working, but I’ve had fewer since I stopped it than I had while taking it. And I feel so much better overall.
Starting yesterday I have a rash on my arms, which may be unrelated. I am going to get in touch with my allergist about that. I am still about four weeks away from finishing the allergy shots. I had an anaphalactic reponse about a month ago and they had to step me back and start over on the last round.
So let me know how you think we should proceed. Thank you.
Hi Ms. Phillips
The EEG was normal so did not show changes during the aura symptoms you experienced which is often the case for EEG with auras. The 50 mg Vimpat was still a very low dose, so I am not too surprised that it did not help with seizure control, but given the side effects, it seems unlikely that you would tolerate a higher dose. Typically a dose of at least 100 mg twice per day is needed for an adequate trial of this medication. I would not start another medication right away at this point and have the rash evaluated, but if you continue to have frequent seizures, it would be worth at least considering other treatment options. I also requested again that the schedulers make an appointment for you to see a stroke specialist as it did not look like that appointment has been scheduled yet.
Me: I just re-read your message. I’ll be in touch when I’m on the maintenance dose with the allergy shots.
Me: Thanks. I am at the allergist now. I do have an appointment next week with the stroke neurologist. So given my issues shall I just go on without treatment? The seizures do seem to be diminishing in intensity slowly over time but I worry that it’s progressive.
Later that day Dr. Jolly told me in a telephone call that the seizures were not progressive and that we should wait until I was on a maintenance dose to restart any anti-seizure drug.
Message to G4 Exchange with my neurologist today re: EEG. I think this is good news, especially because my allergist is very upbeat about everything. I think maybe since these things have been slowly diminishing over time, maybe I can just live with it, as long as each one isn’t doing even a nanoparticle of damage. I feel actually pretty good today. Not really good, but better than I have in a long time. Even though it’s 90+ degrees, humid, and pollen is very high.
The rash mentioned in the exchange the allergist said is most likely just eczema from weed-eating yesterday. It’s better too,
A follow-up exchange with my DC friends:
Wendy: July 16: what did your Medusa hat reveal?
July 17: It showed some spikes in my sleep that were sub-seizure but typical of very mild epileptic seizures. The diagnosis seems settled now but treatment is still dicey. We decided to wait until I finish the allergy shots and then try a drug similar to Keppra. Very frustrating.
Wendy: so the diagnosis is mild epileptic seizures?
Me: yes, focal aware seizures. I asked and they don’t do any damage each time I have one. They are so so much milder than they were when I had those with you guys in West Virginia. But they are unpleasant and rattle me. I recently went four days without one and my anxiety lifted. But now again I have about one a day and the anxiety gnaws. I’m walking a lot with Z, which helps. I walked 13 miles last week.
Wendy: Lordy! Let’s stick with the nomenclature of you having “spells” –sounds more interesting!
Me: I lean toward fits. But spells are also a go-to term.
Aimee: Why, Eugenia, these are surely vapors!!
Wendy: There we go!
Me: sinkin’ spells.
Me: (fanning my face with a fine linen hankie) I do believe I am having’ the vapors!
So time marched on. I had another appointment July 16 at the Epilepsy clinic, with a PA who will be my primary contact from now on. I liked her. In between all the brain/stroke tests, on July 18 I had to have a regularly scheduled colonoscopy. Which required first a full day of hideous prep and then for Jeff to come with me and drive me home. They removed six polyps. I had to wait days to hear they were benign. Come back in three years.
Then July 30, I had my first appointment at Stroke Neurology. Same drill except the waiting room was bigger and the wait longer. I was met by the fellow, had a long productive talk with him. After half an hour or so, he goes out, comes back 10 minutes later with the actual doctor, who I’ll call Dr. Finnagan, who I was surprised to see was a woman, and not surprised later when I looked her up, to see how she must have looked 20-25 years ago. She jabbered at me for a while. I liked her. I liked him. I asked questions that I can’t remember and got answers I can’t remember. And I’ve learned not to get invested. I doubt I’ll ever see her again.
They said they were sending me for another MRI and some heart testing.
Then our dental insurance kicked in on August 8 and I had a root canal August 13, and then the process for new crown. In the midst the temporary crown fell off. I got the permanent crown August 27.
And, I had a regularly scheduled semi-annual visit with my surgical oncologist, who said I looked fine. She said she had been going to release me because it’s been five years since I had the stage one lump removed. But since my medical oncologist hasn’t moved me from diagnostic to screening mammograms, she says I should keep coming.
On August 14, I went for the MRA at Vanderbilt’s satellite facility at 100 Oaks. I now know that an MRA (magnetic resonance angiography) focuses on the blood vessels instead of the tissue surrounding it.
I had never really been in this relatively new medical place and it’s mammoth, an old mall now nearly completely filled with Vandy operations.
The MRA tech was really nice, but very efficient and brisk. “Hold still.” I behaved myself, despite needing to swallow all the time and not doing so, so I felt some of the water-boarding panic. Despite that reflex, I was quite still and relaxed and the powerful banging noises frightened my anxiety so much it went away for about 24 hours.
His report came quickly.
MRA HEAD AND NECK WITH AND WITHOUT CONTRAST
HISTORY: Personal history of transient ischemic attack (TIA),
and cerebral infarction without residual /
NECK: There is a short common origin of the innominate and left
common carotid artery. No appreciable subclavian arterial stenosis.
POSTERIOR CIRCULATION: Left vertebral artery is dominant. No
appreciable stenosis or aneurysm.
ANTERIOR CIRCULATION: Bilateral ICA tortuosity. Both arteries take a
hairpin turns, but no appreciable high-grade stenosis or dissection
POSTERIOR CIRCULATION: Relatively abrupt narrowing of the right
vertebral artery as it crosses the dura, although its intradural
distribution is smooth. Otherwise no appreciable stenosis or aneurysm.
ANTERIOR CIRCULATION: No appreciable stenosis or aneurysm.
I read this and was like, “HAIR PIN TURNS????” But I restrained myself, because aside from that and “RELATIVELY ABRUPT NARROWING!!” it kind of sounded like good news. I decided to wait to ring the firehouse bell until after the next test.
August 19, I had an EKG and an Echo Cardiogram on Vandy’s main campus but in a building I’d never been in before. Sadly I am beginning to know my way around the Vanderbilt Medical Center, especially how to get to the cafe, which has a booth that makes really good hamburgers.
The echocardiogram said that everything was fine except one of the heart chambers is refilling too slowly (I think). I looked that up and it says 15 percent of people over 40 have this condition. The EKG took ten minutes to hook up and ten seconds to run the test. Literally.
The tests were over on Wednesday. I got the results off the Vanderbilt health portal on Friday. Everything was normal except the left ventricle showed “grade one diastolic dysfunction.”
I lunch with my friend Emily on Monday. She and I used to work together in the 90s at a PR firm here in town where one of our major roles was conducting semi-political campaigns to help rural public hospitals fend off takeovers by for-profit healthcare companies. We had short-term successes but obviously we and rural communities have lost the long war.
Emily then went on to Vandy’s PR department for the next few decades. She knows this turf well. We agreed I should not call until Wednesday.
Hearing nothing in the meantime, I called on Wednesday. And then sent a message to Dr, Finnagan on the portal.
I received the results of the recent tests last week and wondered whether you or your fellow are planning to follow up with me, text is fine, to give me an idea of what exactly these results mean and whether there are any recommendations for whether and how to manage these conditions, especially the heart valve problems and the narrowed blood vessels in the brain. While much of both reports seemed to be good news, both had notes that are worrying me. Do you share these results with [my primary and the Epilepsy neurologist.]
Three minutes later (!) a nurse responded:
Ms. Philips, are you referring to your MRI and Echo? Please let me know I will have [the doctor] review these results. I do just want to let you know that [the doctor] is out of the office this week and will be back next week so it may take some time for [the doctor] to review these results.
And then around three o’clock the fellow phoned and said the hairpin “tortuosity” was not a risk-factor and my primary could follow up with the heart valve thing, which was not life-threatening.
So there it is. At this point if all goes well, I should finish the allergy shots in four weeks. However, reading over this entire saga I see I have said that at least two other times, the last time in May, and now it is September, so it may be a jinx to speak this hope aloud. But I am farther along with the shots than I’ve ever been, at 3.0. I was stuck on 1.5 for months from May until three weeks ago. So far my reactions haven’t been alarming. (frantically knocking wood) I need to go to 3.5, 4.0, 4.5, then 5.0. That’s the maintenance dose. THEN, I can start treatment for the seizures again, with a new drug in the same class as Keppra.
So, I will produce the next installment of this journey through the Upside Down in a month or so.