With an Epilepsy Diagnosis, I Face Another Battle With Chronic Illness

A holiday-season seizure in a theater starts another journey with chronic illness

Beth Ullah avatar

by Beth Ullah |

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“The secret of change is to focus all of your energy, not on fighting the old, but on building the new.” — Dan Millman

I’m now living with multiple chronic illnesses. Lately, time has been rushing past like a ravenous flood, or standing still like a lonesome statue. In truth, I’ve had to isolate myself in a bubble to cope.

I’ve just been diagnosed with epilepsy, in addition to having relapsing-remitting multiple sclerosis (RRMS).

In the week before Christmas, I experienced my first tonic-clonic seizure in front of my entire family. We were watching “Jack and the Beanstalk” at a pantomime, and I was so excited because it was the first year we’d all gone to one as adults with children. It reminded me of the simpler time of being a child.

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I hadn’t felt right all day. At the time, all I could liken it to was sensory overload, akin to the attacks I’d had with MS before. Before the show even started, I felt as though I’d have to leave at the intermission and rush out of the theater — as fast as one can with MS mobility issues, that is. I had a full seizure in the middle of the lobby.

About 10 days later, I experienced my second seizure. This time it was an absence seizure, without the physical convulsions.

Now I’m about to start an anti-epileptic medication. I don’t have any active lesions, and my MS is stable, according to my most recent MRI a few months ago. The existing scar tissue from my previous lesions, however, caused the seizures, according to my neurologist.

Another battle to fight

I always try to tell myself that things happen for a reason. It’s what has gotten me this far, through my darkest times. Of course, it’s hard to see that when you’re in the moment, which I still am.

MS has undeniably been a fight, one that I’ve taken on with equal and additional ferocity and am currently winning. I would be remiss, though, not to acknowledge the difficulty it’s presented in my life — and not just mine, but also my husband’s, my family’s, and my friends’.

We were finally about to recommence the journey to bring children into our little family. We had an appointment with a new adoption agency the week of my first seizure.

I’m feeling all the same things I felt following my MS diagnosis. There’s relief to have a reason. Hope for treatment. Fear of the uncertainty of what’s to come. Anger that there’s yet another thing to bulldoze its way through our life and plans. Frustration because there’s now another battle to fight.

MS has restricted my life in so many ways already. Now I’m not able to drive and bathe alone. Baths are one of my favorite “me time” activities to relax since my MS fatigue management taught me that showers were simply too exhausting. It’s as though, just as I’ve acclimatized to my life following “Hurricane MS,” another hurricane is landing.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Darren avatar

Darren

Hi, sorry to hear about your diagnosis. Mine was the other way around.
At 17 years old iwas diagnosed with Epilepsy, then MS at 54, its unfortunate they never had MRI scanning back then, but still, I coped, Epilepsy seems more controllerable. In my case any way.
Good luck, my thoughts are with you Darren x

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BONNIE LORD avatar

BONNIE LORD

you're not alone, type 1 diabetes, Hashimoto's disease and lymphodema

Reply
Walter Ben Smoke avatar

Walter Ben Smoke

I strongly relate to your situation. I too have a seizure disorder & MS. I was told that my seizures were due to my MS. Seizure medicine has been a success, but I also stay away from caffiene & alcohol....and too much sugar. I am 78 with SPMS. I know what speeding up and slowing down means. Now I seek to be in the moment. My best wishes. Ben.

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teresa hibbert avatar

teresa hibbert

MS is certainly a day to day battle. I have had the disease for 27 years. I now have secondary progressive. I am 73 and feel most days like 83. You just have to carry on and make the most of each day. I have noticed that most people have no idea how tough this disease can be and even the doctors do not get it. Be strong.

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Susan Digilio avatar

Susan Digilio

WoW Beth!
You are hardly catching a break! I have you in my thoughts and prayers while you “ build the new”

Sue Digilio

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Paul J Mello avatar

Paul J Mello

Was diagnosed in 1972 with r&r now secondary's. Just going with the flow and surely thought there would have been some kind of cure by now.

Just hoping.

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Sune Reippurt Glesner avatar

Sune Reippurt Glesner

Hey Beth

I’m sorry to hear you now have a second illness besides MS to battle with.
I just read your article “With an Epilepsy Diagnosis, I Face Another Battle with Chronic Illness” and I was thinking if you have done any research concerning that we, more often than normal see more than one chronic illness in patients with MS…?

I’ve recently been diagnosed Lupus. I’ve had MS (RRMS) for 10 years, and now I’ve at second autoimmune disease. Have you done any research into this area?

Best regards
Sune Reippurt Glesner
[email protected]

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