The follow up visit with my Neurologist to discuss all test results was tense for me, to say the least. I had been instructed to push a button on the EEG belt attachment every time I seized, and I had pushed it over 100 times in 3 days; between those 100 presses and worrying what the brain scans would say, plus the fact that a previous MRI that showed a 1.3 cm cyst on my brain, I was scared.
The Neurologist told me the EEG did not register any seizures- I was dumbfounded. How was this possible? She went on to tell me she had watched my video and I clearly DID have a seizure, it just didn't register on the equipment. The seizures were happening too deep in my brain for the scalp-attached electrodes to pick up. We can do future, more invasive tests to track them. Now, let's put you on an anti-seizure medication, what's your pharmacy?
Whoa. Hold up for just a minute here, I want to discuss my options before we go straight to some of the strongest medications on the planet. I had joined several seizure support groups on facebook while waiting for the test results, and the tens of thousands of people in these groups spent more time complaining about the side effects of the medications than the seizures! Plus, the majority of them stated that the meds did not stop their seizures, just reduced the frequency and severity.
There are people who had surgery for their seizures- worked great for some, partially for others, temporarily for most, and in some people did not work at all. There is a Vagus Nerve Stimulator, or VNS, an electronic device surgically implanted to control seizures, and the reports in the group were about the same success rate as the surgeries. The prescription anti-seizure drugs, all of them, had so many negative reports that I wasn't willing to even consider them at all.
This left dietary and lifestyle changes, or medicinal cannabis. I considered medical marijuana for my seizures quite seriously, and researched it extensively. It helps about 30% of seizure patients- and those 30% it helps a LOT, many stop having seizures entirely. It's important to get the right kind of medical marijuana- there are hundreds of strains and varieties, and what works for one person will not work for the next one. While I was willing to consider this as a possible option for later, I was not willing to move my family to another state for a one in three chance of success.
When I told my Neurologist I did not want seizure medications, that I wanted to explore dietary and lifestyle changes to control my seizures, she casually stated that my blood tests showed I had Severely low B12. The Neurologist went on to state that many people with seizures will improve with B12 supplementation alone. And we have a winner! I was also told my folate, ferritin, D, and calcium levels were very low.
My B12 levels were so low, the Neurologist wanted me to start on B12 shots, or injections. Due to the severity of my deficiency, and the severity of my neurological symptoms, I was supposed to have a minimum of weekly injections for six months. I was referred back to my general practitioner doctor (GP) and given my first injection. I had been tracking my seizures for weeks at this point- and with that first B12 shot, I stopped having seizures for NINE DAYS. I went from up to 42 a day to none a day for nine whole days- and I felt better than I had in years! I joined a B12 support group on facebook to get further support and education about B12. It's a good thing I did, too- because my GP gave me one more shot, then refused to give any more, ever.
I talked to my GP, told her of the Neurologist's schedule for injections, took printouts of how to treat a severe B12 deficiency with neurological symptoms, to no avail. She had done a blood test to check my B12 after the second injection and my levels were 'abnormally high' and I 'no longer had a deficiency'. I had told her when we did the blood draw that the number was going to be high, because of the injections, and that we should expect that and continue- which is totally safe, since B12 is water soluable. It did not matter. The GP refused me entirely- so I fired her.
My wonderful B12 support group provided me with data and articles and fantastic support, and I began self injecting (SI) at home. This means I buy my own B12 and syringes, and give myself shots. I also learned about all the co-factors that are needed to help your body utilize B12, especially when injecting. I learned that other deficiencies can trigger seizures as well, especially B6 and magnesium.
Thanks to the help of my groups, I am now between one and three seizures a week; and that number would probably be zero if I were able to inject every day, as the correct guidelines instruct (which my Neurologist was not aware of at that time). When I have a supportive doctor who will prescribe my B12, daily injections are probable; right now, it's every other day since I'm paying all out of pocket.
Lifestyle changes: I checked all the prescriptions I was taking at the time (antidepressant, allergy pills, nasal spray, muscle relaxant, pain pills, beta blocker for high blood pressure) and found that all of them lowered the seizure threshold, meaning it is easier to have a seizure, so I quit taking them. I had to taper off the antidepressant over a period of about 6 weeks, and the withdrawal was horrid, causing seizures and psychosis. I learned that sage can be a seizure trigger, and found this to be true for me, so stopped using sage to cook with- I also stopped using sage to smudge with, which was difficult for me, as I really enjoyed daily smudging with sage; now I use frankincense to cleanse my home.
I never injest artificial sweeteners or high fructose corn syrup, I avoid MSG, I no longer microwave my food or drinks, I seriously limit my chocolate and general caffeine intake, I removed major stressors from my life, I meditate regularly, I take Epsom Salt baths, I prioritize sleeping, I drink at least 60 ounces of filtered water a day (and aim for 100 ounces), I get regular mild exercise, I eat regularly so my blood sugar doesn't dip, I avoid processed white sugar, I switched from white table salt to pink Himalayan salt, and I upped my potassium intake (see potassium post).
Here is the list of supplements that I take to control my seizures. Again, this is a vitamin therapy only, no medications or prescriptions for anti-seizure drugs.
- Multivitamin, "Complete Women's Health" by Kroger (grocery brand)
- B Complex, "Vitamin B Complex Maxi" by Kroger (grocery brand)
- Folic acid, 5mg
- Magnesium, powdered ionic magnesium citrate by CALM (unflavored)
- Vitamin D, 5,000 IU
- Vitamin K2, 50 mcg by Solaray
- Vitamin C, 500mg, by WinCo (grocery brand)
- B12 injections, hydroxocobalamin, 1,000 mcg
- Iron, 65mg by Spring Valley
- Calcium/Magnesium/Zinc combo pill by WinCo (grocery brand)
- Zinc, 50mg from the Family Dollar store
- Selenium, 200 mcg by Spring Valley
- Iodine, Lugol's 5%, 2 drops
- L-Glutamine, 500mg by Co-Op (grocery brand)
- Probiotic, "Multidophilus 12" 12 strain formula by Solaray
The Bcomplex and Magnesium are absolutely VITAL to helping prevent seizures the most. I have continued to track my health and seizures, and there were many days when I did not take one or more of my vitamin supplements; the biggest difference was always with the B Complex and the Magnesium (see magnesium post), which are commonly low in people with a seizure disorder.
The L-Glutamine and Probiotics are to heal my gut- I hardly absorb any nutrients from my food, due to extensive gut damage and permeability. Which is why I'm low in basically everything, because the gut is what absorbs and distributes nutrients- and the gut controls the brain (more on this later). So healing my gut is an essential step in overall health and lifelong seizure control.
My next step is to resolve the overgrowth of Candida in my body, which I think will further reduce the seizures and contribute to the healing of my gut. Candida is present in most bodies, but when it has a population boom, it causes serious damage to the entire body, and it needs to be taken seriously (more on this later). I'm also considering going gluten-free; while this has helped many people with their health in general and seizure control specifically, I want to see how I fare after doing the Candida cleanse before making another major diet change.
**Be sure to also read new blog post "Decrease Seizure Frequency" here**
- Pernicious Anaemia/B12 Deficiency
- Diets for Epilepsy
- Epilepsy/Seizure Support and Discussion
- Magnesium Advocacy Group
- Adrenal Fatigue Recovery
- Freedom from Psych Drugs
- Leaky Gut Syndrome/Candida