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facenu (@FaceNu)

New to epilepsy and need guidance and support

Epilepsy & Seizures | Last Active: Jun 7 1:17am | Replies (33)

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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

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Replies to "Hi! I just joined 5 minutes ago...hoping to find answers to questions I don't even know..."

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?


I’ve had migraines since I was in my teens and began with Chloral Hydrate,
then Nembutal, Seconal
and onto Fiorinal and Imitrix.

With two at least a week and raising a family, working and other
resposibilities, aside from trying to
care for my health of epilepsy. tuberous sclerosis and adapting to
systematic growth changes.

From my studies in my late teens at Stanford University’s Doctors Library
and since–“I removed
everything from my life that could trigger (cause raised anxiety,
excitement, etc.)–then I began to
add one item at a time until I was able to handle it.” Somethings I never
did again. But I found
a way to change my trends of thought by doing different things I could.

Now, at 77, I’m fortunate not to have had a migraine in 4+ years and one or
two small normal
headaches gone with an aspirin.

Good Luck.

Kay Kramer

Have you ever tried propranolol? It’s a beta blocker and used for
migraines. I take 1 every day and my migraines have been gone for yrs.

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