Non epilepsy attacks

[Gillianl21]

I found out today after being referred to a neurologist by my GPs that I have been having non epilepsy attacks recently due to stress. Does this go or have I got it forever?

[VivienneWaterworth]

There is not one answer to this question. Some people get over them fairly quickly, others have their seizures fade away over time, while other people continue to get progressively worse over time. There are so many factors that it's probably difficult for anyone to actually predict which way it will go for any one person.

I started having non epileptic seizures back in the 90s, along with significant other neurological issues such as feeling like I was walking through treacle. All those symptoms and seizures went away when I moved interstate to a much less stressful work situation, and I went gluten free. Which one fixed the problem? I don't know.

The seizures came back 6 or 7 years later after a year from hell, when my partner spent a month in hospital with a very rare lung illness that nearly killed him before he got the right treatment (steroids, not antibiotics - which I had to fight for!), my daughter spent 9 months in bed with a back injury from work while her fiancee had 2 knee surgeries and my other daughter was living with us with her toddler son and about to have a baby - by cesarian...all while I waited 4 months from first seeing a doctor until I finally had surgery for uterine cancer. As I said, not a good year at all...and the seizures came back, stronger than ever and very scary, very frightening for everyone who saw them occurring.

They went away again for a few months, but came back with a vengeance after having a very painful recovery from surgery - where I passed out 30 times in 7 days from excruciating pain. That also gave me a good dose of PTSD.

So...yes, you can recover or you can get worse. I'm a lot better now, 10 years later, even though the cancer came back earlier this year as stage 4 inoperable cancer. Three months of hormone treatment and it has gone, thankfully.

Next question you are going to ask...what causes these seizures. No-one really knows however there are multiple theories, one or more may apply to you.

PSYCHOLOGICAL ISSUES. That's what they were ALWAYS blamed on, however for 1 in 3 of us, they have now proved that that's not the case.

MEDICATION ISSUES. Many people get seizures from a sensitivity to one or more of their medications, or from medication interactions. One of my online friends recently discovered that his doctor had him on two meds where the list of known side effects included at least half a dozen serious and life threatening things...most of which he was suffering from!!! His doctor nearly killed him, inadvertently!

I personally get seizures from all the 'happy pills' out there, which was a real problem considering how easily I now get PTSD symptoms very easily (after having several very traumatic things happened in quick succession). I persevered with some SNRIs like Pristiq, and chose to put up with seizures every 2 or 3 days instead of one every month or two, just so I could function. I now juggle a low dose of Amitryptaline so that I barely get enough to work but not quite enough to trigger seizures. A very fine balance, involving taking 1/2 tablets every 2nd or 3rd day.

LACK OF VITAMINS AND/OR MINERALS. This is a biggie for many of us. I periodically suffer from a significant magnesium absorption problem, where my need for extra magnesium can jump from 3 or 4 huge tablets a day, up to 8 tablets a day, especially if I've had a seizure or two. This causes extreme fatigue in my muscles, serious nerve irritations, cramps, and suddenly big seizures. I always take between 3 and 8 tablets (or equivalents) per day. Magnesium is essential food for nerves and muscles. Period. No blood tests needed to prove this one!

Vitamin B12, Folate, Vit D and several other essential vitamins and minerals may not be being absorbed correctly. If that happens, they can cause serious life long damage to nerves and muscles, seizures and multiple other weird neurological symptoms. For many people in this category, blood tests have shown their blood serum levels of these items can still be well with the normal range, and be just slightly lower than the middle of normal range.

On the other hand, taking some other vitamins and minerals can very easily tip you over the safe limit and produce serious toxic reactions. It's a good idea to get professional advice about what to take and what not to take, considering what I and others have said about it.

GLUTEN SENSITIVITIES. A very serious but unknown and undiagnosed problem for many of us. Many people with seizures and/or the FND symptoms have had a significant reduction in their symptoms by going very strictly gluten free.

If I eat frozen potato chips from the freezer of our supermarkets here in Australia, or buy chips from any takeaway and most restaurants, I will suffer from a serious chain reaction of problems that last up to 3 days. These symptoms include significant nerve irritations, muscle restlessness and sleeplessness for the first 24 hours (unless I take Tylenol and valium/valerian).

This kind of gluten sensitivity is nothing like celiac disease (though it's easier to tell people that you have celiac disease, even when you don't). It has not showed up in any of the numerous blood tests of all different kinds that I've had over the past 20 years or so since I first suspected I had a gluten problem. In fact, after I questioned the results from one test, my doctor angrily looked at the results and said, 'not only do you NOT have a gluten problem, you NEVER will have one, and that's more like the profile of .... lupus???!!! ' I got a lot more interest out of him after that one!

There's a lot more information at fndhope.org and neurosymptoms.org ... including ideas on how to recognise when a seizure is about to happen, and how to prevent a seizure from occurring.

[Gillianl21 in reply to VivienneWaterworth]

I've never thought about gluten, but when going out for a meal I have gone unconscious after a cheese & potato pie. I take vitamins tablets and just wish I knew when it was going to happen to prevent it. Had a rough 3 years due to being bullied at last job and eventually losing it, found out daughter has ms and I now have copd 2 and type 2 diabetes. Hopefully things will pick up a bit soon.