Dizzysillyak

Here's the website I've been using to understand OI. The first treatment option listed is salt loading. They list foods that contain salt but I've found that salt water works best for me. I use Himalayan, celtic or Redmond's real salt. Our bodies require 2500 mg of sodium a day and if you're not getting that it can lead to other health issues. Low blood pressure is just one side affect of low sodium ... I'm holding off on taking any meds too since it seems like all I ever get out of them is what's listed as side effects. http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm BTW, I'd look at food intolerances and possible celiac disease / gluten sensitivity. John Hopkins states in this article that OI can come from food intolerances too ... HTH .. Marcia

green, I researched the ketogenic diet at one point too and ended up trying the Modified Atkins Diet (MAD) for seizures instead. John Hopkins recommends this for adults now. If you research these diet protocals, you'll see that those on these protocals weren't evaluated for food intolerances. Which could account for why it works for some and not others. I thought it might help me with my spacey episodes / petite mals since I have a history of myoclonus (jerking). I stopped because my blood glucose level was staying too low and I looked and felt like I was going to faint. I was actually out of town with a family member who was soo scared that I was going to faint that she insisted I eat some fruit. And when that stopped me from feeling faint, I never tried the MAD again. I'm currently on a Paleo / low carb / low oxalate diet. The Paleo diet is known to fix blood glucose problems which some think are responsible for seizures. I've been on the Paleo diet since last year though and although it helped me pass the GTT (glucose tolerance test), I still feel hypoglycemic if I don't eat every 2 - 3 hours. FWIW .. it appears that my hypoglycemia is from a chromium deficiency. I tested deficient in this about 6 weeks ago. I've only been supplementing for 6 weeks so I don't know for sure yet. It takes 4 - 6 months to get our levels back up where they belong. Here's the link for MAD. http://www.hopkinsmedicine.org/press_relea...8/01_28_08.html Edited to add ... Here's a link for a current group who're using the MAD for seizures. I don't know if it's mostly parents, but even if it is the info will be the same. http://health.groups.yahoo.com/group/atkins4seizures/

Ernie, Thanks for replying ... It sounds like you could be a celiac too. Please, keep in mind that you don't have to be a celiac to have problems with gluten though. Dr. Hadjivassilou proved in 2002 that gluten antibodies can damage the brain without affecting the digestive tract. If you google gluten ataxia you'll see his research. I wouldn't want you to miss out on this if your GI isn't up on this ... FWIW. I'm not convinced at this point that celiac disease doesn't come and go on it's own despite eating gluten. I was very sick in 1990 and at one point all I could digest was Ensure. I was losing weight quickly, my skin was grey and my family was very worried. Then for some reason, this stopped and I could eat anything I wanted again. Looking back, I would guess that my digestive tract healed .. IMHO, it's not such a leap to think that our bodies can heal themselves despite repeated assaults. Our bodies are amazing that way. My legs never feel like they weigh a ton anymore nor do I bump into anyone. Embarrassing, huh ? And for some reason, I never felt like I was going to bump into them until I'd almost knocked them down .. I distinctly remember my name being yelled out. That was gluten ataxia. My legs aren't as strong as they could be but that too heavy to lift feeling is gone. BTW, it went away majically one day after being GF for one year. No warning, no signs whatsoever ... I have a good friend who was bedridden for years too. She started taking supplements (based on the research she found on CFS / mitochondria / etc. ) last year and is able to sit up too. Not for long though. She and I were discussing this recently and she is going to look at the idea that she may be deconditioned. The way she is reclining while sitting isn't optimal for back muscles. I'm thinking deconditioning may be why I can't go up the stairs too ... I'm disappointed that the excercises didn't do more for me. Edited to add ... Here is what I consider to be the biggest and most comprehensive group of gluten intolerance articles on the web. http://jccglutenfree.googlepages.com/

I'm new here, but not new to OI. My primary diagnosis is CFS/FM and I've been diagnosed with that since 1990 - 2. BUT, I found out in 2005, that I'm actually an undiagnosed celiac with nuerological + other auto immune problems. And CFS/FM maybe ? ? ? I'm not sure how my CFS/FM symptoms fit in just yet. I was diagnosed with OI along with a multitude of other symptoms back in 1990 - 2 but since I was sooo sick all the time this wasn't addressed specifically. (Hmm, I wonder if each of my symptoms had been addressed seperately instead of under that CFS/FM diagnosis if I'd still be disability ... ) Needless to say, my digestive issues are considerably improved since giving up gluten and other foods that I was intolerant to. I had gluten ataxia but that went away after 1 year on the GF diet. I was using a motorized cart everytime I went grocery shopping because my legs felt too wobbly to carry me and I lost my balance a lot. I mention this because if I hadn't recovered from gluten ataxia, I would've thought it was from OI. The difference is that now I'm not having any balance issues while walking and my legs never feel like they are going out on me. Prior to this, after only a few minutes, I would start bumping into whoever was walking next to me or into racks of clothes, etc. And if I forced myself to walk any distance, I was actually having to think about which leg to move. I used to hang onto the shopping cart if they didn't have any motorized carts available and by the time I made it to the cash register I was a real mess. My legs were wiped out ... But since gluten ataxia involves the eye muslces too, I couldn't focus on the cashier, prices, or anything. BTW, Dr. Hadjivassilou states that gluten ataxia is related to weakness in the arms too ... My eyes still refuse to focus at times but never as bad and I can wash my hair now without giving my arms a break. For the most part, I'm feeling much better. No more gluten ataxia or brain zaps ... and I only get myoclonus (jerking), facial twitches, insomnia and or narcolepsy, if I've been glutenned. I have less brain fog and more energy. The last time I had severe myoclonus was after getting my hair washed and cut at JCPenneys. My hairdresser used a shampoo with wheat protein and I didn't think about it until it was too late .... That brought on the worst jerking I'd had in 2 years. This was my first exposure to wheat protein in shampoo since I'm careful about my shampoo, etc. at home ... At this piont, I'm left with orthostatic intolerance, some fatigue, cognitive problems and post exertional malaise. Sounds bad after typing it but it's an improvement to me ... I'm not up all the different types of orthostatic intolerance .. all I know is my BP dropped 20 pts 2 minutes after standing up the last time my GP checked this. That was May 2008. And this was checked because I insisted. My BP was 70 something over 50 something that day when I arrived. And when I asked the nurse about it she said "Well it was almost that low the last time so apparently you're BP just runs low. " I was curious so I laid down while waiting for my doc and by the time he took it my BP was 120 something over 90 something. Quite a difference .... My GP then had me stand up for 2 minutes and tested it again. It went down to 90 something over 70 something. I wonder how long it would've taken for it to get back down to 7?/5? again ... I'm looking at OI/dysautomia now because now when I walk, my body feels heavy and I struggle with thinking and deep breathing. Going upstairs will bring all this on immediately but my cardiologist says my heart looks good other than my LBBB. Not that I think he' a genius ... but I'm not a surgery candidate. I googled OI and found a great article on how to deal with OI by John Hopkins. I started salt loading according to their treatments steps in May 2008. Only I didn't use their food guide ... lol ... I'm using a variety of salts including Himalayan, Celtic and Redmond Real Salt. Immediately when I added salt to my diet, my BP went up and I could vacuum for 15 minutes. Prior to this, I was only able to vacuum for 5 minutes and rest for up to an hour before continuing. Obviously I need some sodium ... .. I chose healthy salts so I get the minerals. Oh and this works better for me if I drink salt water ... In October 2008, I started PT for OI. I had to take a break when company arrived, but overall was in PT for OI for 10 weeks. I can't see how the PT helped my OI, but it has made my legs stronger. I plan on continuing it anyways. Has anyone tried this ? Does anyone have to lay down flat for 20 - 60 minutes off and on during the day to recover ? And does anyone know why this works ? I was told to look into vestibular excercises for this ... So here I am ... Brain dead from typing this and looking for help ... Thanks ... Marcia BTW. At this point, after discovering that I'm extremely sensitive to gluten, have chronic hypoglycemia, candida and kidney stones, I've settled on the Paleo/low carb/low oxalate diet.