Our Latest Speed Bump: Folate for Your Brain & Chronic Illness

We are finally looking in the rear view mirror at some of the toughest weeks we have had in over a year. Folate (or lack there of) probably played a huge role...

Folate is a vitamin that your brain uses to turn amino acids into a certain types of neurotransmitters called monoamines that deal with cognitive processes and motor/movement processes. These types of neurotransmitters also relay signals between nerve cells that tell your stomach to digest food, your heart to beat, your body to sleep, your lungs to breathe and so on. Some examples of these types of neurotransmitters are serotonin (mood, sleep, pain control, digestion, appetite/cravings), dopamine (focus, movement, attention, pleasure/reward system), epinephrine (stress, heart rate, blood pressure) and norepinephrine (sort of the opposite of epinephrine). They can affect mood, sleep, concentration, weight gain, balance, gait and more. So when your brain folate levels are low, your brain is not able to make all the neurotransmitters it needs to support these basic functions.

A deficiency of folate in the brain can only be measured accurately by a spinal tap - a test that is typically not done unless symptoms are severe, as it involves taking a sample of spinal fluid. It is not known what percentage of the population suffers from mild cases of folate deficiencies because of the limitations in testing. Some symptoms of not enough folate in the brain or possibly an improper folate transport system include developmental delay, motor and gait issues, behavior issues (ADHD), seizures, and possible peripheral neuropathy. There are several studies on the effect of folate in those with autism or ADHD - these studies are very different in nature than those for POTS but they are finding that those with auto-immune illnesses can also have similar deficiencies.

Taking additional folate or b-12 vitamins may not be enough to increase the folate needed in your brain. And many people who are brain folate deficient will test normal for b-12 in a routine blood test - Meghan did. That is because b-12 vitamins and regular folate supplements do not readily cross the blood brain barrier allowing for use in the brain. The blood brain barrier is a filtering system that helps keep out foreign substances and most things that do not belong there. But another supplement, called l-methylfolate, can be taken with a physician's guidance. It is a synthetic form of folate that can more easily cross the blood brain barrier.

Causes of a folate deficiency in the brain are not certain, but are probably affected by poor diet (b-12 is a crucial vitamin that the body does not make), alcohol, certain drugs, and chronic illness. There is also research that supports an auto-immune based cause. The immune response is thought to occur when antibodies attack the choroid plexus (part of the blood brain barrier) reducing the folate transport into the brain. Which goes along with the thinking that Meghan's POTS is auto-immune and that her tics are caused by PANDAS (an auto-immune condition where antibodies cross the blood brain barrier and affect the basal ganglia portion of the brain). Honestly, I think antibodies are the huge medical topic of the future along with other immune system reactions that are causing many types of illnesses. Read an article here about viruses and the effects they can have with causing antibodies. Read an article here about allergies and the effects they can have on the immune response.

When we first met with doctors to determine if Meghan's POTS was auto-immune and if IVIG was a good fit for her, we talked about other things patients used to feel better. One of the doctors suggested trying l-methylfolate. He said that some of his patients felt a huge impact immediately - others had small improvements. We decided to try it and she has taken it for almost 2 years - not realizing yet the total positive affect it was having. Sometime in April her prescription ran out, and with numerous doctors in multiple states (read about fragmented care here), it took over 2 weeks to have it refilled. I keep a fairly detailed daily calendar so I can look back when we need to figure out the hows and whys of any new symptoms that occur each month. After only a few days of not taking it, she started feeling an increase in what we thought at the time were just POTS symptoms. February and March had some unexplained ups and downs so we just weren't sure. By the end of the week, she was having difficulty walking on her own - stumbling, falling down, and running into things. She said she felt like she was on a boat in very wavy water and couldn't control how she moved. She started experiencing a lot of nausea - most likely the result of "motion" sickness. I had to help her walk whenever she needed something.

We went to the emergency room to see if a liter of saline would help - it did not. At the urging of her doctor from the study she is in, we went to an otolaryngologist to rule out an inner ear infection or vestibular issues. Meghan was ANGRY and absolutely REFUSED to cooperate with the thought of seeing more doctors - I'm still not sure how I got her to the ER or glorified ENT (don't ask). Immediately, it was like a flashback to all we had gone through during the first year of seeing doctor after doctor. And ice cream and stuffed animals no longer worked as incentives. The minute the otolaryngologist's nurse told us she had never heard of POTS I wondered what in the world we were even doing there. I felt sick to my stomach. The doctor himself had never heard of POTS. He said he was perplexed by her symptoms - and basically said he didn't know what to do for her - although we did learn she did not fit the classic vestibular issue models and that she didn't have an inner ear infection. Right. He said maybe it was a rare auto-immune ear disease that I could google about. Now, when I google vitamin b-12 deficiency, clearly one of the symptoms is gait, difficulty walking and staggering. Seems like something a doctor might find useful - especially one who deals with those types of issues. It seemed like we had fallen back into the hole of nothingness where no one knew anything.

Thankfully after further conversations with current doctors (who needed inner ear issues ruled out first) it was determined that the l-methylfolate was probably the cause - and her prescription was refilled. Things improved drastically after only a few days. By the end of the week her gait and balance issues were completely gone. She jumped right back into swimming and emotionally she was able to get some relief.

Overall, though, the effects mentally were devastating. During those 2 weeks both Meghan and I wondered if the IVIG was no longer helping and if this was going to be the new normal. She was unable to walk without assistance, had horrible nausea and was pretty much home-bound. She began having panic attacks and mood swings which we are still slowly working our way through. Finishing the school year from home has been the only way to deal with things.

Talk with your doctor first about trying l-methylfolate. You can google and read about it - but be very careful of the sources you find. Any "doctor" with their own website who is trying to sell you l-methylfolate supplements online should be avoided. There are many sites that claim to cure chronic or auto-immune disorders. If these were real legitimate ways to cure chronic illness, the medical field would already be using them! The biggest issue will be finding a doctor who is an expert in the autonomic field or knowledgeable about POTS and neurotransmitters. Possibly your physician that you work with and trust will be willing to learn more about it. Here is a NCBI study that talks about folate and neurotransmitters, one that talks about folate transport, and one that talks about l-methylfolate and autism - keeping in mind that those with neurological conditions may have similar transport problems that those with autism have but not autism itself.