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Old 07-07-2012, 04:32 PM
 
1,098 posts, read 1,578,711 times
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It's a shot in the dark, but I'm asking about anyone who is dealing, or know someone dealing with frequent seizures. My sister since shes moved to a rural part of Oklahoma has been dealing with these and they've become too frequent as almost daily.

She went to the ER again, after she came to they sent her home. The doctors tell her and her husband to go to a specialist, which the specialist tells them to see another specialist, and so on. She has a shunt put in her head and has panic attacks, always complains about pain and is easily nauseated.

Her husband is frustrated (as am I, being her brother) that no one seems to want to help her, but play a game of M.D. hot potato with her health. They've tried every ER they could in the nearest city to no avail, and they're having to wait until Monday just to make an appointment. I'm afraid if another doctor tells then "Whelp, there's nothing I can do, try here instead!" He's going to lose it.

We were talking about some type of affordable home care, unfortunately he's already buried in medical bills as it is. He doesn't know anyone that can do some type of live in or check up on her. At this rate she's going to need some form of assisted living, because going on the floor unconscious frequently is no way to live.

My brother in law is doing his research on his end, and I'm working on some leads. I'd figured getting advice here would steer me in the right direction so any help is greatly appreciated, thanks!
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Old 07-08-2012, 09:09 PM
 
Location: Brawndo-Thirst-Mutilator-Nation
16,333 posts, read 16,444,934 times
Reputation: 12367
Has a very complete workup been done to see if there is an underlying cause of her seizures that are not originating from the CNS???

Have they checked her shunt??? I believe that the shunts regulate cerebrospinal fluid pressure in the brain. They occasionally go bad and cause all sorts of problems.

Has she been formally diagnosed with a seizure disorder( an eeg with provocation)??? And the type of seizures she is having has been confirmed??? Is she being treated with meds.....maybe they need to be adjusted.

Have you read about the Ketogenic Diet??? When meds are not effectively controlling seizures or the meds have too many side effect, the Ketogenic Diet is an option that seems to work very well for many people.

Good luck!

Ketogenic diet - Wikipedia, the free encyclopedia

The ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control (refractory) epilepsy in children.
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Old 07-09-2012, 09:41 PM
 
1,098 posts, read 1,578,711 times
Reputation: 1365
Quote:
Originally Posted by tickyul View Post
Has a very complete workup been done to see if there is an underlying cause of her seizures that are not originating from the CNS???

Have they checked her shunt??? I believe that the shunts regulate cerebrospinal fluid pressure in the brain. They occasionally go bad and cause all sorts of problems.

Has she been formally diagnosed with a seizure disorder( an eeg with provocation)??? And the type of seizures she is having has been confirmed??? Is she being treated with meds.....maybe they need to be adjusted.

Have you read about the Ketogenic Diet??? When meds are not effectively controlling seizures or the meds have too many side effect, the Ketogenic Diet is an option that seems to work very well for many people.

Good luck!

Ketogenic diet - Wikipedia, the free encyclopedia

The ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control (refractory) epilepsy in children.
I asked my brother in law if he asked them to inspect the shunt, unfortunately only a specific specialist can take a look. As I type this they are at the hospital again this time with a neurologist scanning her Xrays and Cscan and so far turned up with nothing.

The original doctor who placed the shunt back in Phoenix ran off to New York, it was tough enough to see the guy driving 400 miles as he was the only doctor to work on her, and he even tells her "That shunt works fine" without doing so much as run a test or two. Other doctors refused to see her until many years later at UMC in Vegas. In which I think they made things worse after two "readjustments" she seems worse off after her stay there.

She is on all sorts of medications, anti-nausea, anti-depressant, blood-pressure, pain medication, now anti-seizure medication, some of the doctors she saw here in Arizona prescribed her some stronger meds that nearly damaged her kidneys. She's always complaining about pain and doctors here believed she is nothing more than a mere drug addict (bad enough Kingman is a haven for druggies, so it ruins getting health care for everyone else.) Her diet sucks when I lived with them for many years, she'd eat sweets and rarely any other type of food and still wonders why her body is in such horrible shape. The doctors in Oklahoma are baffled to why she is on so many medications. I agree that there can be an adjustment in her meds might help.

Thanks for the information, I'll email the diet link to my brother in law. I'm waiting to hear back from the specialist on what they're going to do.
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Old 07-10-2012, 02:14 PM
 
2,222 posts, read 9,444,805 times
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I know someone who started having seizures after eating meat in Mexico. She had a parasite that traveled to her brain. She had surgery years ago and is fine today.

I'm sorry about your sister. I hope the cause can be found quickly.
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Old 07-10-2012, 05:35 PM
 
Location: Brawndo-Thirst-Mutilator-Nation
16,333 posts, read 16,444,934 times
Reputation: 12367
Quote:
Originally Posted by Crackpot View Post
I asked my brother in law if he asked them to inspect the shunt, unfortunately only a specific specialist can take a look. As I type this they are at the hospital again this time with a neurologist scanning her Xrays and Cscan and so far turned up with nothing.

The original doctor who placed the shunt back in Phoenix ran off to New York, it was tough enough to see the guy driving 400 miles as he was the only doctor to work on her, and he even tells her "That shunt works fine" without doing so much as run a test or two. Other doctors refused to see her until many years later at UMC in Vegas. In which I think they made things worse after two "readjustments" she seems worse off after her stay there.

She is on all sorts of medications, anti-nausea, anti-depressant, blood-pressure, pain medication, now anti-seizure medication, some of the doctors she saw here in Arizona prescribed her some stronger meds that nearly damaged her kidneys. She's always complaining about pain and doctors here believed she is nothing more than a mere drug addict (bad enough Kingman is a haven for druggies, so it ruins getting health care for everyone else.) Her diet sucks when I lived with them for many years, she'd eat sweets and rarely any other type of food and still wonders why her body is in such horrible shape. The doctors in Oklahoma are baffled to why she is on so many medications. I agree that there can be an adjustment in her meds might help.

Thanks for the information, I'll email the diet link to my brother in law. I'm waiting to hear back from the specialist on what they're going to do.



Sounds like a very tough situation.

Did she have seizures BEFORE they put the shunt in??? Is there an incident that she can place her finger on that caused the first seizure????

It sounds like your relative has a LOT more going on than just seizures.......overall poor health would be one problem. Insulin Resistance sound very likely also???

The Ketogenic Diet is effective in many people for controlling seizures. In my opinion it is also one of the healthiest ways to eat. Most if not all of those problems that your relative is experiencing would either resolve or improve a LOT on a Ketogenic(high fat, low carb, adequate protein)diet.

I do not want to sound like a jerk...................BUT, from your description, the person in question is probably not going to do much to improve their OVERALL health.
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Old 07-13-2012, 09:57 AM
 
Location: Austin
2,173 posts, read 2,865,601 times
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someone I know is on the best meds possible for this very thing, and they tell her she cannot do ANY other medications, especially pain meds. Apparently, all of the other stuff can affect the brain and just creates more stress. They won't even let her take anti-histamines...
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Old 07-14-2012, 08:38 AM
 
Location: St. Louis
9,567 posts, read 17,103,417 times
Reputation: 13338
Is she consuming aspartame on any regular basis? When I had seizures they stopped when I stopped consuming aspartame and they have never come back. It's another thing to try in this puzzling situation and I wish you all the best--it has to be heartbreaking.
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