Doc Prescribed Alpha-lipoic Acid-making My Tummy Unhappier

[MightyMouse]

Hi all. I had my smell and taste evaluation yesterday and the doctor wants me to be on a high dose of Alpha Lipoic Acid b/c the research says it may help me to recover some of my sense of smell. I started on it last night--it really makes my stomach sick. I'm more symptomatic with regard to POTS/NCS today too.

The tests showed that I have some residual smell left, but I have significant loss. I bombed on all but one smell test--basically I was at "chance or near chance" scores--for those who don't recall basic statistics, that means that I was no better than guessing on tests for telling the difference between an odor vs nothing, matching an odor (kind of like scratch and sniff) to one of four others, and a bunch of other tests. I was totally wiped out after the 6 hours of tests, but glad to hear that the doctor is optomistic that I might improve a little...

...now if I can just tolerate the "cure" long enough to make a difference. I just need to whine for a minute because despite how awful my guts feel today, I'm sticking with it for as long as I can possibly stand it.

Okay, whining done- Nina

[kmpower]

Sherry Rogers in her new book on blood pressure says that alpha-lipoic acid is a mixture of right and left isomers and that the form we need is R-lipoic acid. I believe several companies make it, but I got one from Intensive Nutrition, Inc. My husband and I have taken this for a few months without tummy issues. Perhaps your tummy might be more pleased with this form of it, too. Could you ask your Dr?

Hope the smells that return are only the nice ones.

LL

[Lukkychrm42]

Aww- I hope you survive! And that it had better work, right?!

Hugs,

Megan

[MightyMouse]

I just picked up the only type they stock at my local Target--it's "Origin" brand. I put in an order for a higher dose in one pill so I don't have to take so many--it's going to be "Natrol" brand. We'll see.

Not sure if it's coincidental or not, but I couldn't fall asleep last night until 3am. Today I've got a bit of heartburn, despite my 2x a day of Nexium--and i just feel "out of it". You know, a brain foggy day. If Teri weren't home, I'd still be in bed. Anyway, I've been really good about being back on my gluten free diet now for at least a week, but my prior gluten sins may be partially to blame for my tummy woes. I was having terrible heart burn a few weeks ago, which is why I went back "on the gluten free wagon".

Thanks, too, for the empathy I'm mentally feeling a bit better today even though I'm "foggy". I was really bummed out when I got back from the doctor's office--during all the smell tests, I was instructed that I needed to make a choice even if I wasn't sure or was guessing (called a "forced choice"). After more than 100 test items and only KNOWING I smelled 2 things AT ALL (peanut butter and skunk), I felt really frustrated and kind of sad b/c I just didn't smell anything with the other 98 items. There were a few tests that used a similar forced choice and as the day went on, it was just demoralizing for me to be able to quantify how little I can smell now.

As for good smells vs. bad smells, I'd take just about any, even the bad. Can't have one without the other, right? For now, I just worry about not smelling gas from the stove or our ac/heating system. I wouldn't know if I left it on or if there were a leak, I can't smell smoke either. Eating has no happiness for me--and I can't tell you if my milk is spoiled, or the meat has gone bad, wine tastes bitter, chocolate just tastes sweet without the chocolatey-ness, etc. I mentioned before to folks that for some reason, the loss of smell has set me off the cliff and I'm a bit depressed b/c my simple pleasures are now gone. I never used to think negatively like this, but now I'm finding myself looping through the "what else could go wrong with my body?" thoughts.

Part of my treatment is to practice smelling before bed and again in the morning. I'm supposed to find the strongest stuff I can to activate the chemosensory neurons--it's supposed to help my recovery (if I am to recover) according to research the doctor shared with me. So, I go through my spice rack twice a day smelling things like peppercorn, allspice, fresh nutmeg--and I go to my garden and grab some mint, sage, etc. I can barely smell most of the stuff, but sometimes I can catch a faint "whiff" for a brief moment. Supposedly, it should improve a little over time. How much? I'll know in about 6 months, which is what the doctor believes is my "recovery window", maybe even up to a year?

Nina

[Dizzy Dame]

Hi Nina,

I hope the treatment helps recover some of your smell! Hopefully the side-affects will calm down as your body gets used to it.

Hugs,

Lauren

[Jacquie802]

Nina,

Hope this treatment helps you.....and it isn't too bad on your POTS. Do the docs know what caused all of this for you??

Jacquie

[MightyMouse]

They think it was a viral infection that knocked out the olfactory nerve. The nerve that handles basic taste on the tongue is under trigeminal nerve control, as are "smells" that are noxious like amonia--that's working okay--I have a little bit of impairment, but it's mostly the olfactory nerve that's not functioning.

The other thing is I've had multiple major head traumas that can be additive--the last one I had was a major concussion w/ skull fracture and split my scalp last year from a POTSy episode where I lost my balance and wacked my head on a marble topped table. I lost about an hour of time, maybe more? Teri took good care of me and patched me up with some skin glue. I've had at least 5 major concussions, a few of which involved loss of consciousness and lost time, one that blew my right pupil for a few days (work related--one of my students head butted me like a WWF pro--he, of course, was fine)... you get the idea. Most of these were just hazzards of living with the NCS/POTS issues all my life.

Nina

[calypso]

Nina,

Yikes ... I was just reading about your concussions. Those sound scary, painful and disturbing. I sure hope the ALA works and that you feel better soon. I still have impaired taste and smell, but I would call it reduced, not absent. Who knows what caused mine; I refuse to have more tests unless it gets worse.

Amy

[futurehope]

Wishing you the very best and that you recover the olfactery nerve sensations.

I can relate to feeling that your body is failing you. One thing I remind myself of as often as possible is that "by feeling bad" and "entertaining self-pity" I know nothing will change, except my immune system.

I noticed that when my spirit is down, my immune system and body actually suffer.

It's really difficult when different parts of your body don't work. I hear ya. But try your very best not to let the "down feelings" take over. You can be victorious over this.

[Sunfish]

heya miss mouse -

sorry to hear that there wasn't any magic news, but i realize that's nothing you weren't expecting. i'm glad too that there's a chance of improvement and will keep my fingers & toes crossed that the improvement blows the doc's socks off, as well as yours

the testing sure does sound exhausting though. and it's a bum that the ALA seems to not be agreeing so well with you & your tummy. hopefully that will pass & it will only do good things in the weeks & months to come.

if there were such a thing as a smell/taste transplant, i'd give you mine. b/c honestly i think it would make the not being able to eat thing a bit easier. though it's for different reasons, i can totally relate to the roughness of losing/missing out on a "little thing", i.e. being able to enjoy food/eating.

and...i'd been meaning to write this in one of your earlier posts about taste and never did, so will now. i was watching an old "Everybody Loves Raymond" episode several months back and thought about you right away. not sure if you've seen the show, but i'll give a brief summary. Frank (Ray's dad) started adding loads of salt to his food, a HUGE insult to Marie (Ray's mom/Frank's wife) as she prides herself on her cooking. Frank also starts to like Debra's (Ray's wife) food, which is known for not being so tastey, an even bigger insult to Marie. after much comedic angst or whatnot, Ray & Robert (his brother) figure out that the food is not the issue but rather that Frank's tastebuds aren't working so well. and after much probing they find out that he's been taking some fly-by-night infomercial pill to make him more "manly" in bed; one of the possible side effects listed is a loss of taste. so...mystery solved. and when they eventually tell Marie she without a question affirms that she'd prefer he like her food than be able to have sex any day.

so...there is absolutely no point to my relaying this episode that is definitely more funny to watch than to read about, but whenever your taste/smell stuff comes up i think about it so had to pass it on. even though i know you're not taking any sketchy pills. if only it were that simple, eh?

all joking aside, i really do hope the med & the training/conditioning helps. i'm sure it's all VERY frustrating,

melissa