New to epilepsy and need guidance and support

Hi @FaceNu,
Welcome to Connect, a place to connect with other people dealing with similar health issues. I'd like to introduce you to other Connect members who like you are managing their lives with epilepsy @XhaustedBsue, @TabMar and @kevinkelley. You can read some of their stories here:
https://connect.mayoclinic.org/discussion/i-have-been-battling-with-a-seizure-disorder-since-i-was-2/
https://connect.mayoclinic.org/discussion/those-with-epilepsyseizures-have-you-encountered-any-brain-difficulties-because-of-that/
You may also be interested in the recorded webinar on Adult Epilepsy and New Therapies with Mayo Clinic neurologists Jeffrey Britton, MD, Gregory Cascino, MD, Jerry Shih, MD, and Joseph Sirven, MD https://connect.mayoclinic.org/discussion/webinar-adult-epilepsy-common-clinical-issues-and-new-therapies/

@FaceNu, how often do you experience seizures? What are you most worried about?

I have migraines, up to 15 per month. Both Topamax and Lamictal (Lamotrigine) caused me to have seizures. Never experienced seizures in my life, but after increasing the anti seizure medications above 100 mg. per day, I developed seizures, up to 3 a day, lasting 10-15 minutes. My neurologist said he had never had a patient with this is reaction to Topamax. Seizures stopped within 2 days of discontinuing meds. After discontinuing Topamax, migraines increases to chronic, daily. I now take 240 mg. of Verapamil and 30 mg nortriptyline. Migraines have improved to 10-15 a month, and much less severe.<br />
<br />

Hi! I just joined 5 minutes ago...hoping to find answers to questions I don't even know how to ask. Our son, at 19, got 'swine flu' while at college. He was unable to go to class and had to withdraw. It affected his autonomic system horribly and he lived with this for 3 years. We thought this was bad until the day he suddenly got a migraine that has lasted day and night for 3 years and counting... ALL DAY, EVERY DAY...he feels like his head is about to explode. His sleep has been affected REALLY Badly! He might be able to sleep 2 hours in 24 hours. This is on TOP of the autonomic problems. Medicines work for about a week then have no effect on him at all. He has been at home these 6 years, only occasionally leaving the farm to go get his hair cut or to the doctors' office. Our local doctor is awesome, but last week told us...with heartfelt despair that he "is at my wits' end". Doctors at Emory in Atlanta had no clue how to help him manage his pain or to have ANY life AT ALL. Diamond Headache Clinic in Chicago tried to help and gave us "POTS" for a diagnosis. Mayo, in Jacksonville, tried to help, but gave us no answers and nothing to help. They told us to 'Come back in a year.' Right now, any activity outside the house is about too much for him to bear and we feel truly blessed WHEN he feels well enough to walk down the hill to feed the mules some apples! 🙂 If anyone wants to share advice, stories or whatever...please speak up! For the first time, last week, we heard 'bipolar' mentioned. We are researching lots about this new term... The folks at NAMI have been really nice about giving us advice and support the last few days... Thanks!
Prayers from LOTS of friends, family and even strangers have been the strength that is getting us by day by day! God has truly blessed us to be parents to this humble, sweet and wonderful young man who is enduring all these horrible things and never complains! We have to ask him how he is feeling. What a role model!
Any ideas about getting Disability to go on through?
Thanks for any and all help! 🙂 Beccahp

Welcome to Connect @debburrington. Thanks for sharing your story. I hope you, @FaceNu and @beccahp will continue to support one another.

Hi @beccahp,
I simply can't imagine living with a migraine 24/7 as your son does. As a mother it must be heart wrenching that you can't take the pain away. I sure hope you find some relief for your son. What type of advice and support are you getting from NAMI?

Wow, thank you @debburrington. Very interesting. At the time of (what I consider to be) my second seizure, I was ON a Topamax program, but increasing dosage weekly, but slowly. A couple days before the the incident, I had increased my Topamax from 50mg to 100mg - I had difficulty tolerating the side effects so that was a big jump. I always felt that Topamax played a role in the second episode, but I attributed its role to the effect it had on my short term memory: i remember that morning having a headache, and feeling stressed about getting my kids in the car, go to school. At that time, I took both Excedrin and Advil for pain control. I have pieced together the event of that morning and I remember thinking, "oh I have such a headache, here I'm going to take the advil and exedrin now" then couple minutes would pass, and I would be yelling, "kids! lets get going, we're already late to school!" then I remember thinking, "man, I have such a headache, here I'm going to take the advil and exedrin now." At the time, there was no known aggregate that caused the incident but I always wondered if I "rinsed and repeated" with the advil and exedrin because I simply forgot I already took it. But your story helped me challenge that assumption - my theory on this was never verified by a doctor, I suppose I just wanted to blame anything for what happened. Perhaps the Topamax had some impact.

Thank you!! I see my neurologist next week and I will ask about this.

Ellen

That sounds so frustrating!! He has all of these physical, concrete, actual symptoms, yet they have no way to physically, concretely and actually explained what happening with the body.

I have chronic daily migraines, 24/7, and like I wrote initially, I've been living with it every day since 2002. I've seen a lot of doctors, been to lots of clinics, and of course tried every treatment option suggested under the sun. I think I might have missed something in your post - but it sounds like he is being assed for a psychiatric diagnosis in effort to explain physical symptoms. If you don't mind me asking, what was it that made you, your family, or your medical team to investigate a mental health cause? I ask because - well, for one, I do not believe there "physical" health, and that's one thing, then there is "mental" health, which is a different thing. It sounds like the science on this is catching up to what many of us have always known. Its true that physical health is seen as more - well, medical, - but because of that, mental health is seen as separate, as its own genre, with its only list of specific symptoms, to meet specific critic, to determine a specific diagnosis. Sorry - I'm going on and on.
I'm just wondering what inspired his medical team to assess for a mental health cause?

Hi Ellen, <br />
<br />
The seizures from Topiramate began gradually, starting out as absence seizures...short periods of staring into space and sort of "tuning out". As the dose of Topiramate was increased, they progressed to include an initial feeling of dread or fear, and then jerking and stiffening movements of my arms, legs and entire body, with some strange eye moments. This was all observed by my husband. I was aware of most of what was occurring and I never did lose consciousness, but my husband says there were moments when I would seem to "not be there" and would not respond when he asked questions. All this occurred over a couple of weeks. When I reported the episodes to my neurologist, he told me they were migraine seizures. I was hospitalized on an emergency admit by my neurologist to be monitored by EEG to try to catch one of the seizure episodes, but by that time I had discontinued the Topiramate and did not have another episode, so I am convinced they were caused by the medication. I had the same experience with Lamotrigine a few months later, but discontinued it after I had one seizure episode.<br />
<br />

Hi,<br />
<br />
I've had migraines since I was in my teens and began with Chloral Hydrate,<br />
then Nembutal, Seconal<br />
and onto Fiorinal and Imitrix.<br />
<br />
With two at least a week and raising a family, working and other<br />
resposibilities, aside from trying to<br />
care for my health of epilepsy. tuberous sclerosis and adapting to<br />
systematic growth changes.<br />
<br />
From my studies in my late teens at Stanford University's Doctors Library<br />
and since--"I removed<br />
everything from my life that could trigger (cause raised anxiety,<br />
excitement, etc.)--then I began to<br />
add one item at a time until I was able to handle it." Somethings I never<br />
did again. But I found<br />
a way to change my trends of thought by doing different things I could.<br />
<br />
Now, at 77, I'm fortunate not to have had a migraine in 4+ years and one or<br />
two small normal<br />
headaches gone with an aspirin.<br />
<br />
Good Luck.<br />
<br />
Kay Kramer<br />