Dizzysillyak

Great news ! When I clicked on this I was wondering if you were going to mention dietary changes, esp gluten. The reason the gf industry is such a big success is from stories like yours, mine and all the others who've discovered that we needed to eat healthier foods. Fwiw, if you're not where you think you should be healthwise, I'd look at the paleo or wahls diet. While eliminating my known food intolerances got rid of most of my symptoms those helped me regain some of my strength. If you haven't already, I'd get stool testing and nutritional testing. I see an integrative, both md and holistic, who's helped tremendously. I'm still couchbound quite a bit but I've been totally disabled for 23 years now. And I just discovered that I needed to treat my allergies / mast cells. Tc .. D

I'm sorry to hear your son has this. I have a petite mal and sob when I've been up too long or do the pmttt. I have pots so my heart starts racing. I've been dx with adrenal fatigue via the 2 - 4 days ? saliva test. So far I've found that caffeine and gluten trigger me to do this more often. That and not eating. I'm hypoglycemic and need to eat something to keep my blood glucose up every 30 - 60 minutes when doing any kind of physical activity, walking, laundry marathon, etc, and every 2 hours when resting. I'm a celiac who wasn't gf until I was 50 so that probably explains this. Has your son been tested for gluten sensitivity ? In my experience, A stool test for gluten antibodies is more accurate than other tests. But eliminating all common food intolerances might help you get to the root cause of these too. An integrative dr, both an md and holistic, should be able to help too. I just started down the mast cell protocal route and it's helping my oi. Info on this is on this site. Tc .. D

Hi naomi Are you still wearing this ? If so how about doing a pmttt yourself to make sure your pots is documented? Fwiw, I'd need to lay down for an hour prior to get my hr down to my normal resting hr. Since your doc isn't up on pots he may need to see this. tc .. D

I'm sorry this didn't work out like you had planned but I enjoyed reading your story. I'm not sure how holter monitors work but if you did a pmttt and forced yourself to have a pots episode would it show up ? If so, how about doing 2 or 3 so he believes it. Tc .. D

I have severe me too but eliminating my KNOWN food intolerances and chemicals resolved most of my symptoms except oi. I suspect my mast cells were going crazy from all the toxins. And I was an undiagnosed celiac until I was 50. I had neuro problems, etc from gluten too. On whether you can use your hr numbers from lying down after the test as well as before the test, my answer is no because you're not doing the test properly. For ex, my hr goes down an extra 10 pts after I've been laying down 45 + minutes but not sooner. It's in the 70's initially after I lay down but drops to 64 - 67. So my resting hr is 64 - 67 not 70+. So even if I've been laying down and watching a movie for over an hour, it stays around 64 - 67. The last 15 minutes is when I finally feel completely healthy again. My heart, lungs, brain, etc are no longer struggling to work. And I feel completely healthy until I get up again. My hr is/was ? 118 - 12? when I have a pots episode and need to lay down. On mc meds, that's been reduced to 104 ? But it's too early for me to have complete control over meds and symptoms because I'm allergic to most foods and chemicals. I probably need to see a specialist. As far as mast cell meds go, you can't tell how well they work until you get your baseline. Better ? Dizzy

Hi batik I'm sorry but I'm just not following you here. For me, this is one of those things that I had to see repeatedly to understand. So I spent a few hours on different days monitoring my bp and hr and how I was feeling. Realizing I had pots and my body's reaction (petite mal, sob, hr, etc) really helped me understand why standing up made me feel so bad. I'd noticed back in 2007, that I felt completely healthy if I had been laying down for awhile but never felt well when upright. That's what lead me to learning more about oi and getting a bp / hr cuff. My point is that if you're not feeling healthy when rested your reactions to doing this test may not be clear for you. It took me a couple of years after eliminating my known food intolerances and toxins to feel healthy at rest. Hope this helps. Dizzy

Thanks. This med looks promising. Good to hear you got a dx. Will you be trying the med they used ? Fwiw, provigil woke me up but kept me awake at night. And it made me extremely hyper during the day. I've had my share of problems with sleep. I had what I called narcolepsy until giving up wheat. Then my nocturnal myoclonus (jerking when entering Rem) responded to going gf so I got off Klonopin. I recently went back on Klonopin because I realized even tho diet and sleep supplements helped me, I needed the Klonopin for myoclonus still. It's not bad enough to wake me up completely but it's still there. Now, I'm sleeping like a log but the Klonopin is dragging me down during the day. I'm looking for something to take during the day to counteract it and this may be it. Did your sleep study show myoclonus ? I thought if your body can't get into rem, that might explain your hypersomelence (sp). Tc .. D

Hi batik, Here's a thread that I started on how to do a diy pmttt based on my experiences at my doctor's offices. You'll find more info on oi if you read the whole thread. Note that it involves laying down for at least an hour beforehand. I recommend that because I found that the effects of my POTS/ hypoperfusion (high hr, petite mal and sob) will not resolve in less than an hour. So getting up before I've laid down flat for an hour brought those symptoms back. I had to do this several times writing down my findings to understand what's really happening. tc ... d http://forums.phoeni...-and-nmh.12291/

Hi I didn't see any reference to trying holistic medicine. I failed miserably too for 15 1/2 years until I changed my diet (Wahls now) and started taking mast cell meds. The info is on this board. tc ... d

I have pem (post exertional malaise) so I can get out and walk for hours at a time one day but I'll feel like a zombie the next day or two or three. I used to have a motorized cart because I had ataxia and fell into things all the time but that appeared to have been from gluten. Thankfully that's been gone since Sept 2006. At times I wish I still had one tho because while my legs are ok, my brain isn't all there. I just had the opportunity to test building up my endurance (dog sitting for 10 days) and found out that I can push through PEM on a physical level but not mentally. My brain just won't work if I've done too much. Thankfully dogs don't care if you're not all there. ; ) When I had the chance to go back to resting, I felt a calm that I hadn't felt in weeks. I was happier and got my sense of humor back too. Just a side note .. One thing I love about this msg board is how honest and helpful we are towards each other. I've learned so much here. Thanks .. : ) ... D

Hi Doozly, I've tried a lot of dietary interventions in the last 7 years and found relief from most of my me/cfs symptoms and some health issues I didn't know I had but only one thing helped my oi until I started the mc protocal. In Jan 2012, my oh went away either from treating with strong antibiotic regime for h pylori and parasites OR eating more dark leafy greens daily. I'm betting it was the antibiotics because when I caught h pylori, etc my oi was so bad I could barely stand up at all. The anbiotics would've killed other pathogens too. Fwiw tho ... I've been Paleo for 4 years and switched to more of a Wahls type in Jan 2012. Before that I was gfcfsf + known intolerances free + chemical free starting in 2005. Which means I've been 98 % (due to occassional cheating) grain, legume, starchy veggie and processed food free for 4 years. I tried eating more raw veggies, Wahls diet, starting in Jan 2012, but after 9 months realized that it was too much for me to try to keep up with. I gave up juicing after 3 months. The energy involved meant all I did was track down fresh organic food, clean it, eat, then track down more. I have chronic disabling oi and I was pushing myself to stay upright for too long. I also realized recently that my digestive tract just can't handle some of these either. I don't have the enzymes for some of these foods. I love raw peppers, onions, garlic, etc but they don't love me back . ; ) I have a lot less gas if I don't eat these raw or cooked. And for some reason certain raw foods like carrots, beets, garlic, etc are causing throat pain. I've seen others on the web talk about this too. Mine started a couple of months AFTER I started juicing these. Now I can eat them at all, even cooked, without getting this pain. I appear to have damaged my esophagus by drinking the raw juice from these. I'm not sure if it matters, but I used an el cheapo juicer so I was getting some pulp. After the pain started, I tried draining the pulp and it didn't help. I've been experimenting the last couple of months with eating less raw but can't say if it's helping anything other than my digestion. It hasn't help my oi or energy. As far as raw foods go, so far I'm good with romain lettuce, parsley and cilantro. And some dehydrated foods that are considered raw. Fwiw, from what I've experienced, we're all different in what our bodies need and this changes over time. I felt great when I first went on the gfcf, etc diet but that stopped. I also felt great for a little while when I went on the paleo then the Wahls diet. I'm working on a digestive enzyme / probiotic regime now. Sorry for the book. Tc .. D

Congratulations. I'm working on this aspect too. I'm hoping my local dr can handle the testing but if not I'll try to see a specialist too. Good luck finding meds or supplements that work for you. I still need to avoid my known trigger foods but I've been eating more of those since finding meds that help. If you're interested so far I'm responding to taking 25 - 30 mg Wal-zyr (Walgreens brand Zyrtec) + children's Benadryl + 90 mg Allegra with 90% - 100% improvement in swelling / angioedema. I didn't realize my pelvic and bladder pain were from angioedema caused by mast cells. It's wonderful not having pain all the time. : ) I had one negative diy pmttt (poor man's tilt table test) for oh and pots so far but I need to repeat this. It's my first negative test in 23 years tho. : ) .. I still need to work on staying upright longer tho. Good luck .. D

imho, it sounds like it's time for you to fire this doctor. He's not listening, ignoring your pots dx and has diagnosed you with an illness that's going to affect how other medical professionals view you. Have you tried supplements for sleep ? Melatonin, 5htp and theanine help me. Or ask your gp for a sleep med. I need klonopin for nocturnal myoclonus. 5htp helps with mood but I've read that taking too much can make you euphoric. I seem to need 100 mg at bedtime for mood. I've never felt euphoric from taking up to 300 mg if I'd done too much. Tc ... D

I'm on the paleo / wahls diet (minus 6 cups of veggies) due to food intolerances. Symptoms include ataxia, ibs, gerd, seizures, phlegm and shiners. The mc protocal is helping my oi but I don't think mine's food related. If it is I haven't figured it out yet. Please don't take this personally. I don't mean it that way but I get a kick out of people calling diets restrictive now that I've learned to eat a bigger healthier variety of foods than I ever ate before. Google has made it easy to learn how to prepare raw vegan, indian, ethiopian, chinese, etc etc. And the gf trend has made more grains and seeds available than we've ever seen. I just bought teff and quinoa the other day. I'm planning on making injera an ethiopian bread. I found a recipe for quinoa chips that I'll be trying next. I'll eat the bread and chips in moderation of course because of my hyperinsulinemia. I can have the ethiopian veggies tho. Tc .. D

Great article. Someone did their homework. Imho, this award exemplifies how skewed some of the info in the medical arena really is. This is just another example where they blame it on the patient since they can't (or won't ?) figure it out. It's amazing to me how "scientists" can actually believe this crap. Tc ... D

Dani, Hugs. I'm sorry to hear you're having a rough time. I can't imagine the trauma of seeing someone get killed like that. I hope they can help you with your eye. Any chance they're wrong ? Did you consider seeing a specialist yet ? The good news is that your hearing is coming up. My judge was very nice once he saw how bad I was so that was good. Hope yours goes as well. Tc .. D

I do this too. I "think" 500 mg b3 / no flush inositol hexanicotinate (by solgar) and jarrow 500 mg nac (just nac) are helping me with this right now but I only started testing these. I've been on nac for about a month and it worked great when I first took it but the that effect didn't last. It's a pre-cursor to glutathione tho so it's good to take. I just started the b3 and had weird popcorn popping feelings in my head afterwards that have subsided. I've gotten used to weird feelings in my head so I wasn't too worried about this. Lol. Together these are definitely clearing up my Klonopin head in the morning which is great but then I'm still struggling with brain fog in the afternoon. So far a second nac in the afternoon helps but not as much as the am dose or taking these together. The problem is that I'm not sure how much b3 is safe of if I need to try nadh instead. I'll let you know tho. I realize we're all different and these may not be what you need but I thought I'd pass this on anyways. Tc .. D

I forgot to mention too that when I first get to the airport, if there's no one outside who can help me get a wheelchair, the airlines have instructed me to go up to any of their empty counters, first class or whatever and ask them for a wheelchair. They said I don't need to ever stand in a line. While I'm standing there, they do whatever I need done and call for a wheelchair. : ) I can walk short distances fine but the longer I walk and esp if I've got luggage, I'll get potsy and have a petite mal and sob. I used to try dealing with this on my own at the airport but decided it wasn't worth it. The stress of not getting where I need to be is too much for me. I feel so much better avoiding this. Now if I could only get this kind of service at whole foods. ; ) Tc .. D

Wheelchair assistance is great. You get to rest and someone takes you, your bags and your family where you need to go. They know where all the elevators, trains, terminals, etc. are so there's no searching. I usually ask for OJ and they even know where to find that too. I usually tell my assistant right away that I can't comprehend what all I need to do so I'll need their guidance all the way. That way I'm not ready to cry from the stress. And they're not angry with me for not knowing what to do. The airports have special lines at security for wheelchair people so you get through easier. At security, they tell me exactly what to do as far as shoes, computers, food, etc. And they talk to the security people for me if I there are any questions. I just walk throught the scanner on my own and sit back in my wheelchair. I tip well ($5 - $10 depending on time and effort involved) because I really couldn't imagine flying without this kind of assistance. I've only had one or two assistants that I wasn't happy with but they still got me where I needed to go. I had one who insisted on stopping and talking to everyone he knew along the way. You'll need to remind the airline people everytime you need a wheelchair tho. And don't hesitate to remind them twice if it hasn't shown up. Esp if you're travelling during the holidays. Hope you have a great trip. It's nice to get away ... tc ... d

FWIW, I'm not too worried about credible medical professionals believing the info in this article. These are intelligent people who can tell a fluff piece when they see it and will research orthostatic intolerance further. I'm a little concerned that the general public will see this and think we're nuts tho. But then again, how many people nowadays in the general public just google Mayo Clinic to get their opinion ? I read at least 5 sources. FWIW, I haven't seen advocacy to large for profit organizations such as this be productive. Getting the word out on the web tho has been. Just look at us ... : ) tc ... D

I'm hoping someone with a good understanding of mast cells will ask them what their take is on mast cells. As in, what medications should those with oi be taking and how often ? Why don't meds that make me drowsy help my pots ? Specifically, what happens in our brains ? Please list chemicals and nuerotransmitters if known. What about other meds that cause drowsiness ? Is orthostatic intolerance increased by certain drugs ? As long as I'm here, why does climbing stairs exhaust us most of the time but not always ? Specifically, what mechanisms come into play during stair climbing that explain this ? Anyone want to ask these ? Tc .. D

For some reason, I actually thought they might have learned something. I should've known better. No mention of mast cells unless I just missed it. I was po'd after reading repeatedly that the patients are hypervigilant and making their symptoms worse. Gee, ya think having a racing heart, petite mal, hypoperfusion, hypoglycemia, etc might affect a patient's behavoir ? Why does the medical community insist on demeaning the patient when surely they recognize that their treatment methods are failing us ? Or .. do they see this in themselves ? Tc .. D

There may be an area on your face near your eyes that you can lightly press on that will stop this temporarily. I used to get this all the time and this worked for me. A warm compress may help a little too. Other than that gluten and possibly caffeine used to trigger this for me. Tc .. D

Cool. Good to hear you're responding. I felt better by the end of my first day off wheat, etc. It took me years to figure out that I needed to be on the paleo diet to feel my best. I still get sucked into eating those gf cookies if they're offered tho. Lol. Meat, raw nuts, raw seeds, oils (salad dressing mainly) and avocados help me feel fuller. Fwiw, you may or may not want to limit the amount of raw nuts and seeds because they're really high in oxalates. Oxalates are thought to be a factor in kidney stones. Research on what other problems these may cause is ongoing. Fyi, high oxalate foods are being blamed for pelvic and bladder pain but but it appears that mast cells are involved. My symptoms have responded to allergy meds. : ) I wasted 4 years being in pain from eating a few of my trigger foods thinking it was just from the oxalates in these foods. Duh ! Now I can eat more of these trigger foods without being in pain. Boiling high ox foods like raw carrots, beets, rhubarb, spinach, chard and kale reduces their ox values tho. If you're interested, there are high ox lists on the web. I posted on another thread here recently raw carrots and beets caused me to get throat pain after awhile. It's happening to some others too. It's in the web under beets (or carrots) throat pain. I first noticed the pain when I was juicing these. Now I get it everytime I try to eat these. I'll never try that again. I hope this info on oxalates doesn't overwhelm you. I was just trying to give you a heads up just in case. Tc .. D

Interesting thread. Thanks. I was dx with gastroparesis then undiagnosed after going gf, etc. but I can tell certain foods sit in my stomach still. I finally realized that I should just avoid these a few weeks ago instead of trying digestive enzymes, probiotics, etc to get these in me. Beef, shrimp, apple skins, beans, etc all cause stomach pain. I found that chewing romain lettuce, parsley (leaves only) and cilantro (leaves only) give me more energy than juicing did. These are my current salad ingredients and they're not causing me gi problems and they're high in nutrients. I recently stopped trying to eat raw kale, raw onions, leeks, garlic, peppers, celery, etc. in my salads. I was trying to get the nutrients from these but decided it wasn't working for me. I didn't see these listed above but after juicing beets and carrots for a couple on months my esophagus started hurting if I ate or juiced these. I'm not sure if it was the oxalates in these or the texture but I wanted to warn you. Straining the fiber didn't help either. You may want to check out different papayas. The enzymes in the meat and seeds are great for digestion. To me the smaller ones taste better. And I never eat the outer edge next to the skin. I only like the ones that are completely ripe too. Actually, if you have a BJ's nearby their's are only $4 and very good if you let it ripen. Some people can eat overly processed wheat better than whole wheat because whole grain wheat is full of gluten and high fiber. It's only been two weeks so your body still hasn't fully adapted yet either. Not to beat a dead horse but I'd still remove the gluten if I were you. I've seen countless people show up on forums now that say their doctors have advised them to go gf despite neg lab results. I've also seen countless success stories. But I would never have healed as much as I have just by giving up gluten tho. Or by eating those "gf" foods. I need to follow a paleo type diet. I don't mean to sound pushy tho. Hope you get this figured out. Not to be a downer but unless your nutritionist is better than most, you could be wasting your time and money. Imho, dr wahls has the best diet plan if you subtract most of that fiber and allow for your intolerances. Tc .. D