In case I forget.


I apologize before I even write it, Art & Paul.

Hello Lamictal, my old friend,
I’ve come to swallow you again,
Because a pressure softly creeping,
Left its burps while I was sleeping,
And the damage that was planted in my brain
Still remains
And makes the sound of burping.

Hope. That’s what I left the TxCompEpiProg with yesterday. Oh, and a really complicated prescription for ramping up on Lamictal again. And a secret satisfaction that my NEW neurologist, Dr. Neuro B, thinks that my OLD neurologist, Dr. Neuro A, done did me wrong. Because that’s what I thought, too. And it’s nice to be considered right by an expert.

It went sort of like this:

From the smiling, organized, competent clerk at the front desk to the happy, smiling, competent nurse, to the friendly, kind, competent resident, to the smarter than is probably legal, experienced, competent doctor, I felt like I was in the hands of people who not only COULD help me, but seriously wanted to.

I went there expecting to be put off AGAIN, to be a zebra AGAIN, to be sent off with more orders for more tests and no real hope. I left there with a definitive diagnosis, not a differential, a prescription for a drug that helped me tremendously in the past, a request for a new MRI, an offer of continuing care, and a some confidence that maybe maybe maybe I can and will get better, and certainly can and will stop getting worse.

First, the diagnosis. Dr. Neuro B, after reviewing all my prior test results, my seizure toteboard, my meds lists, and symptoms, was saying things like “Usually, with epilepsy, blah blah” and “Epilepsy often blah blah”. I interrupt and say, “Are you telling me I have epilepsy?” His reply was “Yes, you definately have epilepsy. No question. Your EEG is textbook.” (Remember, Dr. Neuro A’s response to this EXACT question was, “No, I’m not telling you that. I’m telling you I don’t know what you have.”) I shook Dr. Neuro B’s hand and thanked him. Finally.

Next, the prescription. Dr. Neuro B reviewed my meds list and said, “So if the Lamictal helped you so much, when it quit working, why did you get taken off of it? Why didn’t you dose get increased?” My answer was, “I asked that, too, and was told that when an AED quits working that you just have to stop it, that it will never work for you again.” His response was a look that said “What the fuck???” and he said “Your dose should have been doubled when it stopped working. You should not have been taken off Lamictal.” I told him that I agreed, and that I wanted to go back on Lamictal if only for the great side effects (spontaneous weight loss and randy like a teenager). He laughed, commiserated with my husband about the things husbands have to do for their wives, and confirmed that yes he intention is to take me up to double the dose I was on when I stopped. I almost kissed the man.

Next, the MRI. I imagine one of the reasons doctors become niche specialists is because of the cool toys they get. I had my MRI films with me and he reviewed them but ordered another brain MRI. He apparently has the biggest, baddest magnet in the south at his disposal and is very proud of that. He said he wants a better resolution and contrast. I don’t mind this at all, and am happy to cooperate willingly with a doctor who is willing to not disregard what I tell him about my experiences, to give me a lot of information without me having to drag it out of him, and to have the guts to tell me when he thinks something has been done wrong. Five big stars for Dr. Neuro B. Minus 6 for Dr. Neuro A.

He also volunteered that while my particular symptomolgy is “rare”, that it isn’t unheard of, that there are reported cases, and that he’s had experience with intractable belching as a manifestation of seizures. Remember, Dr. Neuro A at first said that mine was the first ever recorded case and later said that yes there had been ONE case reported, and that that patient had been put in a mental hospital for 20 years.

When I asked Dr. Neuro B about the video EEG, which is what Dr. Neuro A had originally wanted me to go to the TxCompEpiProg for, he said there is no need for that sort of thing. He said my regular EEG clearly showed all that was needed to make a definitive diagnosis, and that we would only consider a video EEG is the meds didn’t work and we had to consider surgery as an option. He said that was “way down the road”.

So – this is the point where my life has come to. The best day I’ve had in months was the day I got diagnosed as an Epileptic.

And I would be remiss if I didn’t express my deep appreciation and love for my husband and his support. He is totally committed to seeing me through this entire ordeal. He took the day off from work yesterday to go to this appointment with me. He calmed me when I was so nervous in the car on the way over that I almost puked. He held my hand through it all, made sure all the right questions got asked, reinforced my impressions and opinions about how everything was handled, and has just flat out loved me like crazy for 15 years. Thank you, dear husband. Thank you.

Lamictal???? WORK YOUR MAGIC!!

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4 Comments so far
Leave a comment

For anyone who has never struggled to get a diagnosis, it might seem perverse to be happy to receive a diagnosis of epilepsy. But, those of us who have been on this journey, know only to well the relief and the hope that this must bring. Relief, in that finally you know what it is and hope, in that finally someone can do something about it. This is such excellent news. What a difference a day makes, eh? So pleased.

Comment by HealthPsych

Oh and I can’t type. Excuse the typos above.

Comment by HealthPsych

The best day I’ve had in months was the day I got diagnosed as an Epileptic

Because now you know what you are fighting, how to prepare for battle. Good luck with the “new” old medicine and kudos to Mr. ICIF, he’s a keeper.

Comment by Brian the Red

HP and Brian thanks – yes it’s nice to have something specific to focus on it helps curb the fears of something WORSE. The unknown is pretty damned scary.

Comment by incaseiforget




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