epilepsy and autoimmune diseases

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yes, I think a few CWE members have also had epilepsy and lupus, another autoimmune disorder.
 
Nakamova, something I have wondered for a long time, do you have any special medical training? You are so knowledgeable about all medical aspects of epilepsy.
 
No medical training. :) There have been a few doctors in the family tree, so maybe that helps. It definitely helps that I've been hanging around CWE for ten years (yikes! has it been that long?), and have learned tons from everything members like you have shared. I try to research what's out there on the 'net too.
 
I have learned more here than from my doctor or from any other source. Thanks for your dedication Nakamova.
 
Interesting! I am the only one in my family with E, but my 18 year old daughter has difficult to control Lupus and she's the only one with that. It effects her kidneys, joints, hair, lymph nodes, and well, pretty much everything. She's been on many different meds and her rheumatologist is considering chemotherapy next.
 
BrandiBrat said:
Interesting! I am the only one in my family with E, but my 18 year old daughter has difficult to control Lupus and she's the only one with that. It effects her kidneys, joints, hair, lymph nodes, and well, pretty much everything. She's been on many different meds and her rheumatologist is considering chemotherapy next.
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I'm sorry that your daughter has been through so much, and at only 18. :(

I see a rheumatologist for the first time on Thursday. I'm pretty scared. Some of the drugs they use are even scarier than the AEDs.

My husband is in a remission from Ulcerative Colitis. Some of drugs he had to take were awful.
 
oh MAB thanks for this link!!
“We need to change how we think about clinical management of these conditions. These findings suggest a new approach to treating seizures one based on quieting the immune system.”
I have Hashimotos and Vitiligo, and have been looking into Auto-immune disorders. It would be nice to think that by getting the the immune system on the right track the seizures would slow down or even stop.
"immunosuppressant medications " I need to look this up...
 
It took us years to get a Lupus diagnoses, after finding the right Dr. to do the labwork. Since she was 10, she had swollen lymph nodes and was constantly sick. They kept doing biopsies and looking for cancer and lymphoma. Her white cells were always off the chart and physicians would always say she was fighting an infection somewhere. Yes, but for years and years?? Finally, when she developed arthritis in her hands and hips at such a young age, she finally got the attention of a pcp. It also effected her psychologically. Prior to the diagnosis, she became extremely anxious and depressed and attempted suicide. This is a kid who is normally happy, well adjusted, is a professional model, and has a somewhat normal family (haha). So, it was out of the blue. Her rheumatologist explained to us after seeing her MRI that her brain was effected due to all the years of it being untreated. She was immediately put on an aggressive treatment plan to get her immune system under control, and you're right....the meds are brutal. Everytime she would go into the heat or bright sunlight, she would vomit. She was always sick. Her meds have been adjusted since then, so she's much better, but she hates the meds. We are both photosensitive, so we enjoy our blackout curtains and air conditioning. :) Through hardship, people can come together....so, we encourage each other to take our meds. I hate taking mine too, so we have a deal ;)
I'm glad your hubby is in remission! Woohoo for him! :) I wish you the best on Thursday...I'll be thinking about you. :)
 
BrandiBrat said:
It took us years to get a Lupus diagnoses, after finding the right Dr. to do the labwork. Since she was 10, she had swollen lymph nodes and was constantly sick. They kept doing biopsies and looking for cancer and lymphoma. Her white cells were always off the chart and physicians would always say she was fighting an infection somewhere. Yes, but for years and years?? Finally, when she developed arthritis in her hands and hips at such a young age, she finally got the attention of a pcp. It also effected her psychologically. Prior to the diagnosis, she became extremely anxious and depressed and attempted suicide. This is a kid who is normally happy, well adjusted, is a professional model, and has a somewhat normal family (haha). So, it was out of the blue. Her rheumatologist explained to us after seeing her MRI that her brain was effected due to all the years of it being untreated. She was immediately put on an aggressive treatment plan to get her immune system under control, and you're right....the meds are brutal. Everytime she would go into the heat or bright sunlight, she would vomit. She was always sick. Her meds have been adjusted since then, so she's much better, but she hates the meds. We are both photosensitive, so we enjoy our blackout curtains and air conditioning. :) Through hardship, people can come together....so, we encourage each other to take our meds. I hate taking mine too, so we have a deal ;)
I'm glad your hubby is in remission! Woohoo for him! :) I wish you the best on Thursday...I'll be thinking about you. :)
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Thanks Brandi. I've been having a little pity party for myself all day. I'm not usually this way so I'm blaming it on increasing my lamictial.
 
Awe, ((HUGS)) for you! Have your party and I'll bring the beer! It's St. Patrick's Day, so I hope you have some green food coloring to put in. :) :)

I still do the "Why me?" every so often....it's natural. Just take it easy, process what you need to, and be easy on yourself.
 
There's a theory that something called Leaky Gut Syndrome is at the root of both neurological and auto -immune disorders. It basically starts with the gut being so irritated and gummed up by gluten, soy, corn, and dairy casein that the villi, the little fingers on the inside that are supposed to absorb nutrients, can't do their job. The body's plan B, in a desperate attempt to get some nutrients somehow is to relax the permeability of the gut (hence the term leaky). The problem with this however is that it also allows things that should stay in the gut (partially digested food) to get out into the blood and body cavities. The body does not recognize this, for lack of a better word, poop, as being food. It sounds the alarm bells as if for a foreign invader. So, what looks like the body attacking itself is really the body attacking this invader within.

This same damage to the gut villi also leaves the brain without adequate nutrients no matter how healthy of a diet you try to eat. A mal-nourished brain is unable to make repairs and keep electrical signals flowing smoothly.
 
Egads...that's why I eat clean. No processed foods, whatsoever. I eat primarily a raw, plant based diet. Since I train in bodybuilding, I eat chicken for protein. But, I plan everything that goes into my body. People really don't realize how much the garbage-food they put into their bodies effects them.
 
Studies have found that there's an elevated risk for epilepsy seen with all 12 autoimmune diseases. This suggests that there many be an autoimmune aspect to at least some forms of epilepsy. There are still more questions than answers at this point, but I bet the next few years will provide research confirming that gut issues play a role in at many if not all of the autoimmune + epilepsy cases. With celiac disease in particular, they suspect that a toxic reaction to gluten and/or deficiencies in pyroxidine (a form of B6) or folate may be the cause.
 
OH alohabird and nakamova this is incredible!
I feel so bad for doing that to myself, although through my teens and 20's I had no idea about gluten or celiacs. I never thought that eating bad/processed foods could ever lead to such destruction of my immune system.
So if i have an mri and it comes back clean there is a good chance it could be due to this! It makes sense that one thing leads to another, until your body shows the worst signs like seizures.

Question: can this be reversed? How long would it take with a healthy diet or kept to get the immune system back in order?
 
Question: can this be reversed? How long would it take with a healthy diet or kept to get the immune system back in order?
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This is the million dollar question! The science isn't there yet to says definitively that "x" (immune or gut issues) causes "y" (seizures).

But it's never too late to see if you can improve your health by making dietary and lifestyle adjustments. In terms of epilepsy, at the very least there's the possibility that you might be able to reduce the number of seizures, or reduce the dosage of the medications needed to control them.
 
I agree that there are not large scale scientific quality tesst that definitively prove gut issues >>>seizures but that doesn't bother me. Unfortunately our medical establishment is so stacked by the pharmaceutical companies being the source of funding for research that a dietary intervention (which can't be bottled and patented) is probably never going to get studied. So, in the absence of that we have to do what makes sense for us here and now.

Fortunately there is a lot of smaller scale research that was not aiming to show the gut/seizure connection but ended up doing it anyway. Studies of children with ADHD for example who are put on a gluten free diet also have a reduction in seizures. And animal research can be very valuable too. On Dr. Symes site (dogtorj.com) there is an interesting cross species study because the doctor himself had a bad case of celiac disease so he started studying that for humans to help himself then he thought about the content of most modern pet foods and thought this might be relevant to his patients as well. Turns out it was. Dogs put on a GF diet stopped seizing within 48 hours.

Common sense enters here and says, "Gee, dogs never used to have epilepsy back in the day when they were fed bones and table/kitchen scraps". True they didn't. Now the top ingredients in most pet foods are grains,soy, and milk derived and canine and feline epilepsy are rampant.

The answer to the "how long being healthy does it take to reverse the damage" question above is a big fat "It Depends". It depends on the level of damage done and the length of time it has gone on. But the human body is amazingly resilient. The recovery though has to be done on the same basis as the damage, day to day over a long period of time.
 
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