Posted 03 May 2008 - 12:26 AM
Posted 03 May 2008 - 07:19 AM
I think leaving the chemicals behind is admirable, as long as you don't beat yourself up for slipping a in a provigil now and then. I've thought aabout it, and may try to go med-free in the future, so you inspire me.
BTW, FT...Welcome to the Community!
Feel free to log your experience here if you'd like. Some may be following your path someday
Posted 03 May 2008 - 06:07 PM
My story,in 5 minutes or less, upon my diagnosis my first year of college, perfect timing, the docs put me on a combo of Ritalin and Vivactil...man after a few years of that my stomach was a near disaster...constantly in knots and steadily heading towards IBS (did I really just post that) Anyway, I made the somewhat stubborn decision to leave all the meds behind. Not easy when you work behind a computer...but I had an evening job which helped alot. My only downfall was I gained some weight due to not eating at work, waiting until I got home and having dinner before bed...I knew better as an athlete, but did it anyway. Many years later I moved to another state and in the process of finding a PCP, this Dr decided I didn't know my body as well as he did and turned me in to the DMV for continuing to drive. (Before anyone decides to judge that, you go live in rural america and NOT drive), besides I know the time frame I have trouble and I know the sugar cravings that proceed EDS...I'm probably more cautious than the average Joe. Then you can't tell me folks with other health issues are all walking to the store and work, please...wow, that was a Big tangent...can you tell I'm a bit defensive about it all! *LOL* No, I didn't go slash this Dr's tires and make him walk or anything...I did tell him off in front of his waiting room...so he sent me a letter stating he couldn't be my Dr, like I was going to make another appointment! (That might seem harsh, but he really was unprofessional with the discussion.) So I finally found a groovy neurologist, but was still I forced to do another sleep lab! I'm convinced its because the PCP back home when I went off my meds thought it was all in my head despite sleep lab results. So, yet again, so that I can operate large machinery, I've been on meds the last six years. This time its methylin ER in the morning and methylphenidate in the afternoon. At first, I could tell a difference as I was attempting to take some classes and noticed that way...but the ER is barely holding up now and the other gives me headaches and I really just don't want to up any dose of anything. I remember growing up and folks saying "drugs are bad" "this is your brain on drugs...*insert* pic of frying egg"...and then they turn around and say you have to take these drugs to be OK. Well, news flash...last time I checked I was only slightly overweight and only ocassionally needed a powernap I'm done. Unfortunately, after a company buy out and yep, lay off... I chose to move back to the rural area I'm from originally. The only problem is trying to find a naturopathic around here for a decent quarter is almost impossible. So I'm going to fly it by my neurologist and see how many colors he turns before replying...but if he won't help me I will find someone who will. That's the beauty in our medical community...I get to interview them...which I think surprises one or two every now and then. And hopefully within a year's time I'll manage to make it back to a bigger metro area where the alternative healthcare/food is more practically priced. That said, I'll check back to see if more folks will post...and I'll make a post when I've tried something new...drugs, drugs and sugary treats, that's what this girl is made of....Not for long!
Posted 04 May 2008 - 11:00 AM
Posted 09 May 2008 - 03:07 AM
Posted 10 May 2008 - 11:23 PM
Why don't you just post more info here? Why keep it to yourself...
Share with the rest of us, eh?
Posted 11 May 2008 - 03:26 AM
Posted 11 May 2008 - 02:25 PM
BP...It's AWAYS good to see you here!
It's all about coping, and we all cope in different ways. There is no right way or wrong way, just "a" way. I like that we share different ideas as a sort of exchange. Whether we like it or not, we all end up going dawn a road. And there seldom is a wrong one...Well, okay the "Vodka and Xyrem" road is better off not traveled, but you know what I mean.
I'd like more discussion on natural ways that help. I'd like more discussion on what is natural that works, and what is natural that doesn't.
love and prayers!
Posted 15 May 2008 - 10:35 AM
I think I'm definately going to pitch this vitamin regime I found, as well as, discuss Neurofeedback Training w/ my Dr. at the end of the month. I've become fascinated with the latter recently; mainly due to things I've been aware of over the years...computer visual wackiness. The first being, whenever I might be watching another person on the web scroll down though pages too quickly it truly makes my stomach churn..."whoa-whoa, too fast!" The other thing I noticed is reactions I have while playing a game over the network at work (on breaks and lunch only, of course ). Either the movement or 'gun flash' would set off my cataplexy or the cataplexy w/ 'momentary' EDS. My co-workers were mildly amused as it was Way easier to find me and all I could muster was "you're losing me...". Thus, the complete fascination w/ the Nerofeedback Training.
This past week a dear friend of mine passed away unexpectedly, despite his own past health problems. I've been re-elvaluating, well, ...everything. My health and the happiness therein is just at the top of the list. It's important to seek the support of friends and family and when they don't agree - seek the support of those traveling a similar path.
Life is too short to Not be smiling!!
Posted 04 August 2008 - 04:41 PM
I was wondering how your doing on your drug free path? Has any of this information helped you?
I personally, stick with the naps, Vitamins, and Tai Chi.
I'm not exactly high functioning, but I am much better off now than I was with any of the drugs!
Posted 15 August 2008 - 10:04 PM
Well, I'll tell you I control my N/C by avoiding foods that trigger it, and I can have REALLY bad C if I'm not careful! I have lived life for 6 years without medication AND without severe symptoms, although lately it's not been quite as perfect. Still, it's possible. I'm seeing a Naturopath now to see if it's food allergies since my regular docs pretend I didn't even say anything when I ask about food allergies. And yet this has been key to my whole self-treatment success for years. It means everything to me because it lets me live life. I will certainly post more later as I explore naturopathy further, and if anyone's interested in how I went about finding out what foods I was sensitive to, feel free to message me or something. I'm happy to share. (and I'm not the only one this has worked for) I'm not a doctor or anything so I can't say it's healthy, but the Naturopath said it is exactly the same thing they do, so hey not so bad for an ameteur, eh?
Posted 17 August 2008 - 11:12 PM
In the meantime, I started a super-duper multi vitamin which I instantly noticed a difference with...however, it was short lived. So my thought was I would take this the first week of every month and then on an 'as I see fit' basis. I also started taking Siblingual B12 (under the tounge B12) which I'm still trying to decide about. It's not an instant notice as the Biggie multi vitamin was but I can't say I'm Not benefiting from it either. I also drink a powder supplement to try and stay away from sugary beverages and it helps to boost energy. I was kind of left to my own on the Neurofeedback training avenue. The NP gave me an idea locally to look into...which I havn't done, because, well...summertime fun takes priority!
The followup visit was just as great. Again, asked if I felt the need maybe to try Provigil...and I replied "Not unless your going to make me." She laughed, "I'm not going to make you take anything you don't feel the need to be taking." I'm relieved quite frankly. She recommened only trying one or two things at a time to see what's working and what's not and I'm obviously still in the early stages of it all. I don't think I Need any of it, but a little boost in energy a-la health food store isn't so bad. I know my biggest troubles are in my eating and exercise routines or lack of them.
There you have it, that's my story and I'm sticking to it!! I'm freak'n marvelous!!
Oh, and yes, I "used to" do Qigong with a very small class. But I've since moved and find it hard to maintain rountine through moves (big excuse *cough*). Did it help, yup; but in the same breath I was taking better care of myself both physically and emotionally. Finding a 'happy medium', is well, 'life'. I'm motoring right along...best of luck to all of you on your journeys. I'll make attempts to check back in with the new 'alternative' therapies. (I love massage and acupunture...I need to get back into some health/well-being maintenance.)
Posted 17 August 2008 - 11:36 PM
I know the obious things to help me get by... i.e. anything with meat is better left for dinner unless I'm going to be active. I crave sugar like nobody's business which preceeds 'naptime'. But the everyday things I should be looking for/to watch out for in general or within the ingredients might be benefical.
Noticed your in Portland, OR...used to live there...missing it a bit and the Huge network of alternative therapies there.....and Saturday market with friends. Ah, and lest I forget a good coffee on Saturday morning!
Diet, bunny food recipes please...
Posted 20 August 2008 - 10:30 PM
I stumbled upon this treatment option years ago when I was tapering off a medication and got horrible bloating from it (in my neck and hands, not just my stomach!) I decided to try an Atkins-like diet to control my blood sugar, thinking maybe I had too much insulin in my body from the tapering (I didn't have health insurance, so I was on my own for everything.) The first day I tried this diet, it worked. And a couple of days later, I realized I didn't have N symptoms! So I went on this really basic meat-and-veggies-only diet; sugar-free, grain-free, dairy-free, etc. for a month or two. No sauces, no spices, no dressings, nuthin. Then I slowly re-introduced foods I liked and noted whether they triggered my symptoms or not (which seemed quite exaggerated when they happened since I hadn't had any in awhile.) I kept a list, grouped by plant family, so I wouldn't forget later. Most of my triggers fall in the 'grains', 'fruit', or 'shellfish' category, but I can't tolerate aspartame, marijanna, or Plan B pills either. I tried looking for patters and, aside from some entire families affecting me, it seems to be more like a food allergy than any common natural chemical in these foods triggering it.
I've lived this way for 6 years now. It's a pain that I can't eat bread or any grains except corn, and that I have to avoid a lot of other yummy foods that I love, like peaches and bananas. But it's very cool not to be falling down 20 times a day anymore. Lately it's gotton worse again so I don't think I'm being as strict as I should be (I use tortillas instead of bread since it's the yeast I'm affected by, but maybe it's the wheat, too.) Ok, I know I'm not being as strict. It's been hard to go back after getting pregnant, during which time I could eat anything I wanted without symptoms. Weird, i know! I started this diet when I lived alone and had complete control of my kitchen. Now I have a family who can eat anything and the house is always stocked to the rafters with things I can 'cheat' with, that only trigger my symptoms a little bit or gradually over time. It's really terrible.
Since Portland is such a great resource for alternative medicines and the allopathic doc was dissapointing (*scoff*...what did I expect?) I'm scheduled for allergy testing on Monday. I'm very curious to see if their list matches mine. I'm really optimistic that they can help me stay med free AND cataplexy free. At least they listen and take me seriously. I can't say that for a lot of regular doctors, although most of the docs at OHSU are much better than the average doc! They're just too scared to treat N. Silly.
As for recipes, I do love sauteed eggplant. Peel the eggplant, slice it and soak the slices in vegetable oil & balsamic vinegar. Fry them up until their brown and even slightly crispy. It's great topped with some Classico spaghetti sauce as well (that brand tends to have less sugar than brands like Ragu). When I was desperate for chocolate, before Atkins hit it big and made my life easy, I would melt unsweetened baker's chocolate in a saucepan and mix in some food-grade vegetable glycerine. It's really quite satisfying...you can't get darker chocolate than that! Later I was able to use pure crystalline fructose once I found it didn't trigger symptoms. (seems like the longer it takes my body to break down a sugar and use it, the better. sugar alcohols are ok for me, too. corn syrup is the epitome of evil since it has free-floating glucose.) For most meals I just bake a chicken breast and sprinkle seasoning on it, like curry powder or various herbs (rosemary & the like). I'll have some sort of vegetable side dish, like green beans or corn. When I started, I also used to keep sugar-free protein bars handy in case of hunger. I couldn't just run to the local coffee shop to get a pastry! After I ate like this for a few weeks, hunger wasn't much of a problem, and I almost never ate so much I got full. Food was satisfying and enjoyable in smaller amounts, and I forgot what full felt like!
Posted 19 October 2008 - 12:32 AM
I think I've got most of my allergies pinned to grasses. I can't eat grains that come from grass-like plants, and the fruits that I can't eat have profilins in them that are linked to grass pollen and birch tree pollen, and I get terrible hay fever in May/June. It's kind of liberating to be able to narrow it down to a couple of things after all these years. Yay.
It's just hard going gluten-free. I have nightmares I eat a plate of oreo crumbs before I realize I can't eat them anymore. And today my son got pretzels and I almost ate one before I remembered. It's scary! And then I get sad when I can't buy cookie dough ice cream and think I'll never eat another Orange Milano or piece of cake ever again. Oh gods it's terrible! I tell my Celiac brother he's so lucky to only have to avoid one thing. Gluten is just the latest addition to my N-inducing list. There's barely anything left besides plain meat and fresh veggies. (I'm losing a pound a week, though...the only silver lining! ok, ok, no C is pretty great too...lol)
Posted 19 October 2008 - 01:05 PM
Posted 19 October 2008 - 04:26 PM
I have never been allowed to mow the yard. My parents were always afraid I would fall into the mower.... and that was before I even knew I had N! sad...... I love the smell of fresh cut grass.