I think I've figured out something that might be key to some of my health issues (beyond hypersomnia - which is still a probable, maybe thing).
If I go back in time, I had my PE in Nov 2004. When I had it, it was discovered that I had high homocysteine values - which is usually an indication of B vitamin deficiency. It can raise your risk of clots (hence possible contributor to PE and why I got tested). It can raise your risk for heart disease and cause lots of issues. Although you can lower your homocysteine levels by taking B vitamins, there's no proof it lowers the risk of clotting, etc. HOWEVER... taking B vitamins is relatively safe, inexpensive, and it does lower the levels ... so it's standard practice to suggest taking Folic Acid, B6, and B12. I took them faithfully.
Within a few months I had recovered (as far as I can tell) from my PE - but within a month of that I started having weird pains, chest pressure, etc. And thus all my "issues" started. Things got worse & worse until I ended up having those "episodes" of loss of feeling and loss of balance. Then in January 2006, I had an "event" where those episodes stopped being intermittent and instead become "my new reality". At that time, they couldn't figure out what was causing it. For lack of any other explanation, they decided that it could have been a very small stroke. Although those symptoms didn't come back for another six months or so... I still wasn't doing well. Tired all the time, etc. etc.
After my mother got diagnosed with B6 toxicity - knowing I was taking B6 she told me to get tested. I asked REPEATEDLY to get tested for toxicity and got told repeatedly that it was next to impossible to get toxicity from a single over the counter supplement. After going to mayo and still not getting answers on my issues, I ended up at the pain clinic - where I got stubborn and flat out demanded someone test me. Sure enough, I was toxic. Told to stop taking the supplement immediately. Didn't really get told anything else. And, honestly? I didn't really ask anything else about it.
I've had some intermittent symptoms since - but things got much worse this fall. I had another "event" in Dec 2006. But, funny enough? I did a search on B6 toxicity - and wouldn't you know it? nerve damage in the form of loss of sensation, numbness, tingling, pain - and being overly tired, and balance & coordination issues are the symptoms of B6 toxicity. Now, wouldn't you think someone, somewhere would have tied the two of these together? Did I really have to spend $20K on medical tests when I'd already been diagnosed with toxicity? Now, supposedly, after stopping supplements, you're supposed to see improvement in pain, tiredness, and balance and coordination -- and I did for a while. Unfortunately, the nerve damage *might* be permanent. But then things did get worse again.
But, I thought to myself - but I'm not taking B6. I know you can get B6 from diet - so I got to wondering if perhaps, I'm just overly sensitive to it (since I shouldn't have been toxic from the supplement when I was taking it). Started digging into seeing a Naturopath (woohoo! one just moved to Des Moines!!!). Can't wait to start working with her!
Anyway - didn't take me long to figure out two probably problems:
My cereal bars I've been practically living off of (eating 1 or 2 EVERY morning, and sometimes one for a snack)??? Contain B6 -- 100% of recommended dose!
But, then I also got to thinking about the supplements I am taking. Wouldn't you know it? My doc had me start taking a multi-vitamin around about the time that things started to really turn down hill again. And, when I look at the bottle? It supplies 100% of the daily recommended dose as well.
Now, I haven't had time to discuss this with my doctor yet. But this really fits with my symptoms and timing, and it all ties together far better than any of the other suggestions. I can't help but be very frustrated by the whole process. I know that he's tested my B12 levels as B12 deficiency can have similar symptoms - but I've been taking those supplements regularly and my levels are normal. I'm also pretty sure that since I haven't been taking B6 on it's own, he hasn't tested for it - but I'm going to call and find out for sure. What do you bet it's higher than it should be?
I'm trying to not get my hopes up... but I think, just maybe - this is a key.