I've been having issues with loss of balance for the past two years and am asking for your ideas.
Some background about me: I have had idiopathic myoclonic epilepsy for 12 years and am in my mid-30s now. I've had vitamin D deficiency twice but now take 800IU daily.
The balance issues started two years ago when I had to switch birth control from the patch (no longer being manufactured) to the pill. My period has never normalized; it used to be bright red, and now is very dark and full of clots. I've gone to the gyn 3 times about this and am on my third type of birth control pill to try to become "normal" again.
I did go to my GP twice for the balance issues and have another appointment scheduled. I tried individual supplements based on what I've read online:
1. folic acid as well as methylfolate for cerebral folate deficiency (CFD appears as a normal serum level of folate, but there will be no folate in the cerebral spinal fluid). I STRONGLY suspected this due to the fact that the anticonvulsant medication I am on and the birth control are both folate antagonists as well as other symptoms of folate deficiency (pale skin, cold extremities, shortness of breath, heart palpitations, etc). However, folic acid only worked intermittently and then I was back to feeling without my balance.
2. biotin - read a study on pubmed where a young woman with myloclonus and ataxia (the fancy name for loss of balance) had multiple carboxylase deficiency which is treatable by biotin. She took biotin and was better. However, I only have access to OTC dosages with a max of 10,000 mcg (like 10 milligrams). The pharmacologic dose used to treat this person was in 100s of milligrams, which isn't available to the public.
3. copper - I tried copper one night when my chest was hurting and it immediately helped. I know it is also important for cellular respiration, but I am afraid of it building up to toxic levels so I only take it when I have the chest hurting.
4. B12 - I read online that this resolved some peoples' dizziness so I bought 50mcgs and took one but I was still feeling like I would lose my balance after I took it..
I've heard of manganese helping with dizziness, but I am afraid of trying it alone because I've read that can build up to toxic levels, too. It's associated with Parkinson's disease and I hardly need anything else like that on top of the epilepsy!
I finally purchased a multivitamin that does contain everything above that I thought could be causing the loss of balance and it helped immensely after the first day(not sure which element - copper, manganese? I am thinking one of these two) but if I take it regularly, I get a "pressure" build up in my head - maybe one of the trace elements accumulating? So I have to take like every 2 days or so.
Has anyone else had balance issues and resolved them with supplementation? I'm trying to figure out what is causing this...doctors have not been very helpful
I also have muscle weakness and fatigue but they were both alleviated by the supplement (Alive Women's Energy). Also, curiously my varicose veins were better and copper helps with vascular health so maybe that is another hint?