Dizzysillyak

This sounds like me ... knowing where this is coming from has made me less anxious about it ... too bad we can't just lie down whenever we need to ...

If your electrolytes are off or you have any nutritional deficiencies, it's a good idea to look at your diet and if that seems ok .. then look at why you may not be absorbing these. Of course, I think of celiac disease first because of my background. But if this is the case, your intestines can't absorb nutrients ... Leaky gut is an option here too though. I'm sure if you google nutritional deficiences they'll give you an idea of how else this can happen ... Diabetes insipidus means that you're missing the hormone that tells your body to retain water. A freind of mine used to have a severe problem with this and said it's gotten better since she started taking supplements and going on the GFCF low carb diet. It is amazing to me just what foods do our bodies ... I'm an ex junk food junkie myself ... Healing for some takes time though. My friend, mentioned above who has CFS like I do and is on the GFCF low carb diet, was bedridden for 3 years and is just now after a year and 1/2 getting out and running errands on her own. She noticed an improvement very quickly though when she started taking supplements, including those for detoxing, the Kreb's cycle and the heart (Sinatra protocal). Our stories are typical for many who go on this diet though ... not that I'm healed completely yet but I've come a long way in the last 3 1/2 years.

I'm not up on Dr. Grubb's work or the different types of POTS, but at this point it appears to me that most of the research done by traditional medicine isn't geared towards how to get over this or any other disease. That's why it's called a treatment plan ... I've been basing my healing from CFS/FM (most if not all of those with CFS have OI) protocal on what I've read about diet and malnutrition. Here's a link about sodium deficiency. This one is as good as any. I've read quite a few and they all said the same things. Of course, if you have a problem with sodium or other nutrients it's best to have some labs run to check this out. http://www.healthvitaminsguide.com/minerals/sodium.htm

yikes ... this thread looks just like a thread you'd see at www.celiac.com or any of the other gf forums when someone has been newly diagnosed with celiac disease. You may want to go take a look ... That's how I figured out gluten was a problem for me. Before being diagnosed with celiac disease I was on prevacid, protonix, nexium, donnatal elixer, zelnorm, immodium, lomotil, etc etc etc ... and told to go on the GERD diet, gastroparesis diet, etc ... and I still felt horrible ... The NIH says that 97% of celiacs are undiagnosed. Not that you have to be celiac to have digestive issues. Even gluten intolerance or other food intolerances can cause digestive or other symptoms ... Good luck with this ...

I remember my arms feeling like they had turned to rubber but I can't say I remember any pain. However, I was in constant pain from head to toe from 1990 - 1998 so it was probably happening and I just can't remember it now ... My heavy arms was due to gluten ataxia and resolved itself when I got the gluten out of my diet ... As far as the pain ... I've seen a lot of people relate their pain to a variety of vitamin deficiencies ... From B to D to omega 3, etc ... Have you had your vitamin levels tested ? Have you been tested for food intolerances ? These can cause pain too ...

I have to come back and read this sometime but it's too late tonight ... I wanted quickly add that I'm finding relief at times by taking a little extra salt when I'm feeling puny.I was out today and needed a boost so I took one of those small salt packages, added it to about an ounce of water and gulped it ... and it worked ... I've noticed this before though ... the first time I ever salt loaded this happened too ... I have to remember to do this more often ... And this is in addition to the normal salt water I drink all day ...

Has your daughter been tested for celiac disease or gluten intolerance ? This could explain the digestive symptoms, hashimoto's and possibly the OI. I'm a celiac with OI ... Our bodies need 2500 -3000 mg of sodium daily but I had to go slowly on introducing salt to my diet. It gave me headaches and stomach cramps if I had too much in the beginning ..

On the salt loading .. I figured out the hard way that I had to go slow on this. Granted, I'm 53 and much older than you ... My 21 year old DD drinks Red Bull like it was water ... It made me hyper and gave me headaches when I took too much. I'll get fleeting muslce cramps in my legs if I have too much now ... they go away immediately but I usually take it as a warning sign ... FWIW. I'd stick to the healthy salts too. Himalayan, celtic and Redmond's real salt ... The minerals in these are great for our bodies. Most HFS will carry these. I experimented around with table salt but that just made me feel weird ... Also, keep in mind that sodium and potassium have to be in balance in our bodies. If you eat plenty of foods that have potassium this won't be a problem. Some recommend taking No Salt with your sodium but that just made me feel weird too ... If you google foods potassium you'll get a list of which foods have this ... good luck ... I hope you get the same benefits I did ...

mkoven, When you said your OI varied, it made me think of how salt must have been doing this to me all those years and I never realized it. I'm fairly certain now that on the days I was doing well it was because I'd eaten plenty of salt. Good reminder on staying active.

Melissa, I've started doing this in my car between stops while running errands. It helps a little, but would help a lot more if I could lay flat. What kind of morning troubles ? I'm good in the am now that my hypoglycemia isn't so bad.

ramakentesh, I haven't been diagnosed as pre diabetic but I think I am. My GTT showed hypoglycemia 2 years ago but was normal this time, other than jumping to 180 at the 1 - 2 hour mark. I really need to find that report and go over it with my new doc. She seems more up on how the body really works than my other doctors. Everyone else just told me to eat every 2 -3 hours ... yeah, right ... that never worked for me ...

I think each of us probably has different standing tolerance. I know mine can vary somewhat from day to day. I'm always dizzy, though, from the moment I sit. Today I was able to vacuum the floor (in one room) for the first time in over a month. If I stand too long, vision shakes, head pounds, get sharp chest pains, and can't take a deep breath. I have pretty bad pooling, though, I think. I can even see mottled skin on my side when I'm laying with that side down. Arms and legs are veiny and purple. I had my first episode of tachycardia over 2 years ago, but have only had disabling symptoms of OI for the last 7 months, and I seem to be getting worse every month. Compression hose have helped somewhat. The only thing that helps me is laying down with my legs up, dim light, not much noise. If I rest like this for a few days then I might be able to use a wheelchair and go on a short outing. I can sit for maybe 10 or 15 minutes with the compression hose that go up to my abdomen until I start feeling really wasted. Just my experience. I'm curious to hear what other people's experiences are because I'm so new with this! I don't really have a frame of reference! Janie Janie, It is interesting to see how others are doing with this ... I can empathize with you because I felt that way most of the time for 16 1/2 years. While I can't guarantee you that eliminating common food intolerances (gluten, dairy, soy, corn, eggs, chemicals, etc) will help you, but it seems to be helping a lot of people besides me ... Gluten is the biggest culprit for me, but others say that soy or dairy or corn, etc was causing most of their symptoms. The muscle weakness and the visual problems sound like gluten ataxia to me. Most of this went away after one year on this diet. While just eliminating those foods helps a lot of people, I had to go on the Paleo diet (just meats, low carb veggies and limited fruit) in an effort to get my chronic hypoglycemia under control. The Paleo diet eliminated my morning weakness and some of my other visual problems. I have the feeling it could be behind my dysautonomia too. But I don't know yet. Take care ... Marcia

Got another question ... How long can you all stand up before feeling light headed ? For me it's usually 20 minutes and then it's downhill from there ... I ask because when I first started researching this someone told me that was how long it took for our bodies to use up all the glucose we have. And that we switch to glycolis after that ... so I needed to look at blood glucose regulation. That was what got me started on the Paleo diet. The Paleo diet is known to fix blood glucose problems ... Anyone know of any research on Blood Glucose and OI ? BTW. I recently found out that I'm low on chromium and chromium is needed to regulate blood glucose ...

Thanks ...I was wondering how common this is ... I never realized how much it helped until most of my other CFS symptoms were gone. Now, I feel "healthy" until this feeling like I have to lie down comes over me ... and after laying down for about an hour, I'm back up feeling "healthy" and energized again. It's weird ... Laying down more frequently throughout the day helps a lot but it's such a pain ... How long have you been GF ? I saw a link on this board to Dr. Hadjivassilou's work on gluten but so far being GF hasn't gotten rid of this symptom for me .. Anyone find that excercise helps get rid of this ? I was thinking that the recumbent bike might have helped this since it just gets the blood moving and doesn't tax our bodies ... Since I don't have a recumbent bike at home I was considering doing the bicycle while laying on my back ...

Thanks .. that was interesting ... I stay away from most of the foods mentioned, but I'm going to try this for a week and see how I do ... I'll stick to a Paleo version though, no grains and red meats and fish too ...

I was reading up on the symptoms and remedies list and couldn't find laying down flat recommended. On most days I absolutely have to lay down totally flat for 20 - 60 minutes several times a day in order to function. After sitting or standing for a few hours, my brain is dead, my body feels heavy and I don't feel like I can get a deep breath. I don't think to check my BP or heart rate because I'm in rescue mode by then ... sitting will help a tiny bit, but I still can't think well enough and really struggle to comprehend what I'm reading or understand what I'm hearing. I feel crappy when I first lay down as if the blood is suddenly set free from my torso and can enter the upper part of my body especially my brain. Then after about 20 minutes, my breathing is back to normal and I find myself taking a deep breath ... I used to feel shakey or jittery when I laid down but I don't do that anymore. Anyone else ? And do they know why this works ? Does it work for everyone ? Is this how you feel when you lay down ? Or how you feel when you just can't sit or stand any longer ? Salt loading helps me but not enough ... I already avoid gluten, dairy, soy, corn, etc but are there other foods that are known to cause this ? Garlic, maybe ? Maybe I still have too much gluten in my diet .. Please don't tell me chocolate can cause this ? Are there foods you are using that help get rid of this ?

This story reminds me of a sleep disorder clinic I went to years ago. While I was in there being tested the staff was reading up on how to test men for impodence. All I remember them saying was that it was a real money maker. I feel sorry for their first few patients ...

I mentioned the gluten ataxia because I thought some of you might have this and think it was OI. Honestly, I would never have known the difference if it hadn't gone away ... I've been able to spin in circles and get up quickly from a laying down position since this was gone too ... I never realized that I was going to bump into anyone until I about knocked them over and they yelled at me ... It wasn't so much the yelling but the actual sensation of bumping that awoke me to where my body was ... FWIW ... From what I've witnessed since I started healing from CFS, I wouldn't waste a lot of time on getting doctors to understand this. I happily told all my doctors about discovering my gluten sensitivity, and walking normally, etc ... and none of them were surprised or necessarily impressed. I even ran into some hostility from some of those in the medical profession while researching my illness ... I have a great intergrative doctor now who supports my journey though .. Isn't the test you mentioned blood work ? I'm terrible at remembering those allergy test names ... I still have significant memory issues ... But, my doc used the stool test for gluten, etc on me the last time. She said it's more sensitive than the blood test. And since I'm supposedly gf (but obviously getting cross contaminated somewhere), she didn't think the blood test would show my antibodies anymore. We used Diagnos-techs, but there is also Genova, or others ... Back to the blood test for allergies ... my DD has an intermittent severe allergy to peanuts and her blood work was negative for peanuts. Her doctor said that she should never eat these because she could die of anaphylaxis, but being a teenager she just had to try it ... She almost gave me a heart attack everytime I'd hear her struggling to get her breath. Luckily she only needed the Epi pen a few times ... Mostly Bendryl and her inhaler took care of the problem. TEENAGERS !! On the upside, she figured out the hard way that she can handle peanuts some days and not others ... All this leaves me wondering just how gluten or other food allergies really work ...

Congratulations Ernie !!! I was wondering about this too. My PT had me doing leg strengthening excercises while laying on my back. I start with ankle rolls or presses, then up to knee squishes (pressing knee against mat or raising my foot while my knee is on rolled towel), then thigh squishes, then toosh squishes and then what's called the bench where you have your feet up near your toosh and raise your hips in the air ... Then I'd go on the recumbent bike for 7 - 10 minutes ... I found that I had to go REALLY slow on the bike or else I was getting winded and fuzzy headed ... He never used a heart monitor on me ... which really surprised me ... when I asked, he said it wasn't a cardio rehab center. Would you all recommend a cardio rehab center ? I may have to look for a dysautomonia doc in my area ...

Thanks ... I agree, it's very confusing ... Someday, soon I hope, everyone in the medical community will be up to speed on how gluten can cause problems other than celiac disease. The number of doctors who get this is growing ... Here's a good link that might help you understand this ... http://jccglutenfree.googlepages.com/glute...vsceliacdisease I always recommend trying the GF diet for one year because that's how long it took for my ataxia to go away ... and Dr. Hadjivassilou recommends this to his ataxia patients ... I've seen others say that their ataxia went away quicker though. The "trick" is to completely avoid all gluten though which means you have to stay away from those GF processed foods that are manufactured in a facility that handles gluten. I see celiacs taking chances with these foods, but I can't ... I'll get my myoclonus back ... which means I could get my ataxia back if I wasn't careful. I figured since I'd been sick so long that getting nutrients from my foods was a good idea too so I've mostly eaten organic meats, fruits and veggies. Healthy fats are a good idea too ..

What's a POTS crash ?

Thanks for the laugh ... If it makes you feel better, my DB was about 5'5" when he was your age and joined the navy. When came back from bootcamp, he was 6 foot and very muscular ... We always teased him about finally getting all the food he needed. I'm 5'5" and 120lbs. I've always had a high metabolism and was wondering if that's common with OI.

I get this some mornings too. And like you I find that the best thing for me to do is to stay busy till it goes away. Sitting at the computer would be difficult while this happening ... Once I figured out what it was, I decided to think of this as a good thing. It always goes away on it's own and I get a lot done while it's happening ...

Unfortunately, the testing for celiac disease or gluten intolerance isn't quite what is should be at this point. Some say that the best way to see if gluten is a problem for you is to take it out of your diet for 1 year. According to Dr. Hadjivassilou it can take that long to get those antibodies out of your system. It took me that long to get over my gluten ataxia. But others are using stool testing for this and I'm leaning towards that now. The blood test for celiac is specifically for celiac disease and won't detect gluten intolerance. I had stool testing done by Diagnos-Techs and it showed gluten antibodies. Plus a few other things like candida and egg allergy ... I would never have known about the egg allergy if the test hadn't shown it. Sure they give me gas, but who doesn't get gas from eggs ... The fact that you have so many deficiencies is a BIG clue though. Celiacs are known for this. I was B12 and iron deficient in 2005 when I appear to have gotten "full blown" celiac disease (meaning everything I ate hurt and I had to go on the elimination diet). My GP neglected to have me tested for celiac disease though, so I can only assume that's what was happening. I was scoped 17 months post GF and still had damage though ... I'm learning about all this as I heal. I finally got my nutrient and minerals tested by Spectracell and found out I was ok in most but deficient in chromium. I thought since I've been on a total health kick since 2005 that all my nutrients would be good by now. Obviously some nutrients aren't as easy to absorb as others ... You talked me into excercising more often ... My PT has me doing minimal cardio ... I do it until I start to get fuzzy headed or winded then stop. Oh and I figured out, with his help of course, that I can last longer on the recumbent bike if I go real slow .... Interesting concept and I'm not sure why it works but it's something to do with allowing the blood to go back into those muscles to bring nourishment ... Good luck with the GF diet ... beware of foods labelled GF that really aren't. We're having problems with cross contamination so stick to companies that are gluten free like Kinnikkinnick, Pamelas, Glutino, etc .... better yet, go Paleo ... Marcia

This was a double post and I'd delete if I could find the delete option ... BTW, it's not like I have my OI under control. I'm a newbie and I'm here to figure this out too. BUT the salt definitely helped ... my BP hasn't been constantly low since May 2008 when I first added the salt. It's still dropping after I've been up awhile though ... ? 4 Old timers .... Do you have a standard protocal like the one from Hopkins here ? And what do you think of steps 1 and 2 the JH protocal ? Did this work for anyone ? or are you still symptomatic ? Step 3 is drug intervention ... how is that working for you all ?