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-> Interesting Discussions
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amother
OP
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 Sat, Jul 04 2020, 10:56 pm
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There was an article about it this week - the medical mystery article. Does anyone have this?? I just got myself diagnosed and would love to hear from the writer herself but she didn’t print a name or contact info
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tweety1
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Sat, Jul 04 2020, 11:04 pm
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Contact mishpacha. They might be able to put you in contact with the writer.
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amother
Puce
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Sat, Jul 04 2020, 11:04 pm
I imagine she can be contacted through family first.
I’m a PA, and after reading just a few lines I diagnosed her right away. So sad that she went so long thinking she had anxiety.
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amother
Pewter
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Sat, Jul 04 2020, 11:12 pm
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OP what I wished I could tell the protagonist in that story was to look into Lyme disease as a root cAuse of her seizures. Especially because there did seem to be some significant anxiety/borderline ocd going on in the beginning. Or other root causes. It seemed sudden onset. Things don’t happen in a vacuum.
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amother
Blush
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Sat, Jul 04 2020, 11:15 pm
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I'm not a PA and I diagnosed her within first few lines as well. My mind was blown that drs missed it.
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amother
Sienna
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Sat, Jul 04 2020, 11:24 pm
My husband suffers from petit mal (absence) seizures. Was also a sudden onset a few years ago and he has them since. He has some days a few episodes and sometimes a week can pass without any episodes at all.
It doesn’t affect his life in any way since it lasts a few short seconds and that’s it. He doesn’t take anything for it.
I wish I’d know what caused it since it’s pretty mysterious. I’m also worried that it shouldn’t lead to anything worse down the line ch”v.
So far it’s the same situation for a few years. Not getting better not getting worse.
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amother
Lime
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Sat, Jul 04 2020, 11:43 pm
| amother [ Sienna ] wrote: | My husband suffers from petit mal (absence) seizures. Was also a sudden onset a few years ago and he has them since. He has some days a few episodes and sometimes a week can pass without any episodes at all.
It doesn’t affect his life in any way since it lasts a few short seconds and that’s it. He doesn’t take anything for it.
I wish I’d know what caused it since it’s pretty mysterious. I’m also worried that it shouldn’t lead to anything worse down the line ch”v.
So far it’s the same situation for a few years. Not getting better not getting worse. |
Why isn’t he taking any medication? My daughter has childhood absence seizures which are bH completely controlled with medication. The type she has is typically outgrown after abt two years on meds. But I don’t understand why someone wouldn’t medicate for absence seizures.
Edit to add: perhaps in adults it’s different but I’ve heard of kids absence seizures turning into grand mal seizures if left untreated. Also our neurologist said that it’s not good for the brain to keep seizing, even for very short periods of time.
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Frumwithallergies
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Sat, Jul 04 2020, 11:47 pm
| amother [ Sienna ] wrote: | My husband suffers from petit mal (absence) seizures. Was also a sudden onset a few years ago and he has them since. He has some days a few episodes and sometimes a week can pass without any episodes at all.
It doesn’t affect his life in any way since it lasts a few short seconds and that’s it. He doesn’t take anything for it.
I wish I’d know what caused it since it’s pretty mysterious. I’m also worried that it shouldn’t lead to anything worse down the line ch”v.
So far it’s the same situation for a few years. Not getting better not getting worse. |
Your husband needs to see a neurologist again and take medications to prevent his seizures.
I assume that if he was diagnosed, he has already met a doctor and had an electro-encephalogram (EEG). If he hasn't, then he needs to.
Hatzlacha
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Frumwithallergies
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Sat, Jul 04 2020, 11:51 pm
| amother [ Pewter ] wrote: | | OP what I wished I could tell the protagonist in that story was to look into Lyme disease as a root cAuse of her seizures. Especially because there did seem to be some significant anxiety/borderline ocd going on in the beginning. Or other root causes. It seemed sudden onset. Things don’t happen in a vacuum. |
Not everything is about Lyme disease.
Please know that Lyme disease is not at all a frequent cause of seizure disorders. Please don't lead people on with false ideas.
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amother
Sienna
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Sun, Jul 05 2020, 12:08 am
Lime and frum with allergies. Thanks for your replies. Of course he’s been to a neurologist and had all necessary tests taken before he was diagnosed.
The reason why he chose not to go ahead with the meds was because the way the doctor explained it, the meds are not in any way a cure, and it comes with its own long list of serious side effects. (The dr scared me off by telling me if anything looks out of the ordinary call me or 911 immediately. Almost like he expected things to happen)It’s not like if he takes meds for a few weeks then it will go away. It’s just a bandaid.
So why should he take medication for his entire life and live with the risk of those side effects vs the risk of absence seizures? Don’t forget these are very minor ones. Of course if things would get worse we’d reconsider. Obviously we’d love to get rid of it completely. I wish we’d know what suddenly caused it and if it’s possible to reverse it.
OP if you’d like I’ll open a different thread, I’m not looking to derail yours. But if you want the discussion to remain here let me know.
In fact I’m pretty curious how you suddenly got it too. I do know that information and studies on epilepsy still leaves a lot to be desired.
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amother
OP
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Sun, Jul 05 2020, 12:13 am
| amother [ Sienna ] wrote: | Lime and frum with allergies. Thanks for your replies. Of course he’s been to a neurologist and had all necessary tests taken before he was diagnosed.
The reason why he chose not to go ahead with the meds was because the way the doctor explained it, the meds are not in any way a cure, and it comes with its own long list of serious side effects. (The dr scared me off by telling me if anything looks out of the ordinary call me or 911 immediately. Almost like he expected things to happen)It’s not like if he takes meds for a few weeks then it will go away. It’s just a bandaid.
So why should he take medication for his entire life and live with the risk of those side effects vs the risk of absence seizures? Don’t forget these are very minor ones. Of course if things would get worse we’d reconsider. Obviously we’d love to get rid of it completely. I wish we’d know what suddenly caused it and if it’s possible to reverse it.
OP if you’d like I’ll open a different thread, I’m not looking to derail yours. But if you want the discussion to remain here let me know. |
Hey no problem let the discussion continue!
I know exactly what you mean. I had the same thing I met with a really great neurologist the head of epilepsy clinic in a top hospital.he said I could take medications but if I don’t want to that’s fine too. I’ve been having them since I was I was very little so it’s been quite few years now but the MRI last year came up clear bH. I didn’t know what it was growing up but I knew they weren’t panic attacks. People tried telling me it was but I didn’t believe it. Only a year ago I found the name for it and was so excited. It’s been happening rarely now - once or twice per year compared to every single day and every night as a little kid. So I’m not interested in taking medicine for something that doesn’t happen too often now.
But who knows what’ll be in the future.
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Mama Bear
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Sun, Jul 05 2020, 12:14 am
| amother [ Puce ] wrote: | I imagine she can be contacted through family first.
I’m a PA, and after reading just a few lines I diagnosed her right away. So sad that she went so long thinking she had anxiety. | It's crazy, I thought right away it might be seizures, and I'm not a PA!
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amother
Sienna
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Sun, Jul 05 2020, 12:15 am
| amother [ OP ] wrote: | Hey no problem let the discussion continue!
I know exactly what you mean. I had the same thing I met with a really great neurologist the head of epilepsy clinic in a top hospital.he said I could take medications but if I don’t want to that’s fine too. I’ve been having them since I was I was very little so it’s been quite few years now but the MRI last year came up clear bH. I didn’t know what it was growing up but I knew they weren’t panic attacks. People tried telling me it was but I didn’t believe it. Only a year ago I found the name for it and was so excited. It’s been happening rarely now - once or twice per year compared to every single day and every night as a little kid. So I’m not interested in taking medicine for something that doesn’t happen too often now.
But who knows what’ll be in the future. |
That’s what amazes me. I only met people who had it since childhood. It’s pretty strange and unusual for an adult to get it out of the blue. I wish you a refuah sheleima! It’s tough and pretty scary.
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amother
Lime
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Sun, Jul 05 2020, 12:23 am
| amother [ Sienna ] wrote: | Lime and frum with allergies. Thanks for your replies. Of course he’s been to a neurologist and had all necessary tests taken before he was diagnosed.
The reason why he chose not to go ahead with the meds was because the way the doctor explained it, the meds are not in any way a cure, and it comes with its own long list of serious side effects. (The dr scared me off by telling me if anything looks out of the ordinary call me or 911 immediately. Almost like he expected things to happen)It’s not like if he takes meds for a few weeks then it will go away. It’s just a bandaid.
So why should he take medication for his entire life and live with the risk of those side effects vs the risk of absence seizures? Don’t forget these are very minor ones. Of course if things would get worse we’d reconsider. Obviously we’d love to get rid of it completely. I wish we’d know what suddenly caused it and if it’s possible to reverse it.
OP if you’d like I’ll open a different thread, I’m not looking to derail yours. But if you want the discussion to remain here let me know.
In fact I’m pretty curious how you suddenly got it too. I do know that information and studies on epilepsy still leaves a lot to be desired. |
Perhaps it’s different in adults. My daughter is only 5 and is taking ethosuximide. It’s frequently used to treat childhood absence epilepsy with little to no side effects. Perhaps it’s worth speaking to a different epileptologist for a second opinion.
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amother
Sienna
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Sun, Jul 05 2020, 12:29 am
| amother [ Lime ] wrote: | | Perhaps it’s different in adults. My daughter is only 5 and is taking ethosuximide. It’s frequently used to treat childhood absence epilepsy with little to no side effects. Perhaps it’s worth speaking to a different epileptologist for a second opinion. |
Right, childhood epilepsy shouldn’t be left untreated.
In my husband’s case I feel like meds is not helpful in the long run especially with those possible side effects. What I should be busy doing is trying to find the right dr who can help us figure out why it suddenly happened and if we can cure it, not just cover it up with meds for life.
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amother
OP
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Sun, Jul 05 2020, 12:29 am
| amother [ Lime ] wrote: | | Perhaps it’s different in adults. My daughter is only 5 and is taking ethosuximide. It’s frequently used to treat childhood absence epilepsy with little to no side effects. Perhaps it’s worth speaking to a different epileptologist for a second opinion. |
How was she able to be diagnosed? What symptoms did she give off? I always wonder how my symptoms went unnoticed
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amother
OP
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Sun, Jul 05 2020, 12:32 am
| amother [ Sienna ] wrote: | Right, childhood epilepsy shouldn’t be left untreated.
In my husband’s case I feel like meds is not helpful in the long run especially with those possible side effects. What I should be busy doing is trying to find the right dr who can help us figure out why it suddenly happened and if we can cure it, not just cover it up with meds for life. |
Did he have MRI as part of the tests?
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Frumwithallergies
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Sun, Jul 05 2020, 12:33 am
Epilepsy can start at any age; there are genetic causes, structural causes (like tumours are strokes), and small brain malformations and congenital causes.
Untreated seizures can lead to SUDEP (unexpected death in an epileptic person). Untreated seizures can also lead to more seizures that last longer (status epilepticus) and permanent brain damage.
There are many different meds now. Your doctor will help your husband choose the right one, and switch if his epilepsy isn't well controlled or if there are too many side effects.
Depending on the cause of the seizures, sometimes surgery is part of the treatment plan.
Hatzlacha.
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amother
Sienna
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Sun, Jul 05 2020, 12:33 am
| amother [ OP ] wrote: | | Did he have MRI as part of the tests? |
Yes EEG as well. Both came up clear although he had an episode while the test was taken!
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amother
Sienna
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Sun, Jul 05 2020, 12:38 am
| Frumwithallergies wrote: | Epilepsy can start at any age; there are genetic causes, structural causes (like tumours are strokes), and small brain malformations and congenital causes.
Untreated seizures can lead to SUDEP (unexpected death in an epileptic person). Untreated seizures can also lead to more seizures that last longer (status epilepticus) and permanent brain damage.
There are many different meds now. Your doctor will help your husband choose the right one, and switch if his epilepsy isn't well controlled or if there are too many side effects.
Depending on the cause of the seizures, sometimes surgery is part of the treatment plan.
Hatzlacha. |
The medication had equally scary side effects. 
I wonder if I should try any of these naturopath ideas out there. Wonder if anyone cured adult epilepsy through a special diet. Heard that the ketogenic diet is supposed to be helpful but can’t imagine my husband should cooperate with that. It’s hell hard.
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