Dizzysillyak

Great news. From what I've seen your reaction is typical for gluten intolerance. Celiac dot com or any of the other gf sites can confirm this. But I hear you on not knowing what exactly helped. Fwiw dr hadjivassilou tells his patients to expect it to take one year to recover from their gluten ataxia. I'm assuming he's saying it can take at least that long for the nerves to heal. People in my celiac support group told me to give it two years. My recovery (partial) has been a roller coaster of emotions. Mostly good. I'm disappointed that certain problems, pots and hypoglycemia, are still with me. But grateful to have most of my cognitive capabilities back, digestion is much better, etc. Have you had nutritional testing yet ? A lab near me runs these without a doctor's prescription. Celiacs are prone to nutritional deficiencies but oddly aren't typically tested. My heat intolerance vanished after 2 + years. I don't know if it's because I switched to a paleo and low oxalate diet at that point. Tc ... D

Good to hear you're doing well on this. Hope you continue to see progress. Fwiw, I'm not even allowed to do the treadmill hr test so the stairmaster is out for me. I have a left bundle branch block that showed up early in my me/cfs dx. I lose all my co-ordination if I try to run for more than appr. 50 ft. I suspect it's related to the ataxia (probably gluten ataxia) I had from 1990 - 2006. Great info kelly. Thanks. Tc .. X

It could be nocturnal myoclonus too. I jerk myself awake when I go into REM. Sleep study showed this 20 years ago and I was put on Klonopin. Klonopin stops this but Theanine may help it too. FWIW. I was using Theanine for this for a few years then tried Klonopin for some reason and decided it worked better for me. Caffeine, MB12 too many days in a row, gluten and extreme stress make mine worse. tc ... x

I'd like to see beds everywhere and laying down would be the norm. Anyone standing would feel out of place.

Was the scooter working properly ? I use the ones in the stores all the time and sometimes I get one that vibrates or has a little tread missing off the wheels or goes too fast then breaks too easily ... The vibrating is too much for my neurological system and makes me feel like I'm going to have a seizure. When I showed this too the store reps they don't feel it. I'm super sensitive to movements tho. The one I owned never bothered me. Sorry to hear you didn't get to enjoy your trip. As long as you aren't driving a car, I'd take a med to calm this too. Tc .. D

HUGS. Sorry to hear this. It sounds like your goal is to get out of the house more. That's my goal too. I get stir crazy every few days and have to get out. The memories of getting out keep me sane me for a little while then I have to get out again. Do you have someone who can drive you ? Do your freinds should have their licenses ? If so, you could sit reclined with your feet up. I do this everytime someone drives me. In my case, sitting in the front seat is less likely to cause nausea. Have you tried using a motorized cart when your out ? It doesn't eliminate my OI but it helps me save up energy so my OI isn't as prevalent. I can think longer if I use a cart than if I try walking. Longer being the key word here ... lol .. Have you looked at Mast cell protocals yet ? Zyrtec help me with my OI at first but those effects wore off. But that's just me tho. Support garments may help. The thigh to under breast type seem to help me but the others didn't. We're all different here tho. Staying hydrated and well fed while out helps me too. I need extra sugar if I'm out but not too much. OJ works great but glucose tablets help too. I was shocked at how much of a difference this made for me. A small cup of coffee with some sugar and milk work great to revive me if I'm overly tired. hope you get out soon ... tc ... D

Kelly, Increased stamina is normal for most who eliminate food intolerances, esp celiacs. Imho, it's one of the reasons these special diets are so popular. Celiacs begin to absorb nutrients again but I'm not sure if that's true for other food intolerances. Cytokines are reduced tho and that helps. Good to hear you're feeling better. Hope it continues. D

When I tried this my ability to lift a certain weight didn't change. Only the number of reps I could do changed. On my last day of pt before I gave up due to chronic pem (really couldn't think anymore) was spent resting a long time after minimal sets using the same weights as I had previously. For those noticing a difference could you be experiencing post exertional malaise (pem) ? Pacific Labs has a test for this but I'm not sure they explain exactly what it means as far as chemical reactions that are occuring. I have to go slow on the recumbant bike because my muscles don't recover quick enough. Trying to pedal quickly only leads to muscle spasms in my calves. I have chronic low blood glucose and wonder if it's related. Thoughts ? .. D

We can have different reactions to foods or chemicals so these may not be the foods or chemicals that are triggering this. Unless you're super sensitive to one of these and need to avoid it totally. I do this if I get cross contaminated from gluten. I was doing this non stop before getting off gluten. Going on a diet of organic meats, fruits and veggies may stop this. Then you can just add foods back in that are suspects. I'd try some strong probiotics and S boulardii first tho. tc ... D PS. If this fails or you don't want to wait to see if it works, you can do a CDSA and see what's happening in your gut.

Hi jangle, Congrats on your exercise routine. It's interesting seeing if and how this helps you. Good luck with this. Btw. My pt office has a machine that simulates the stair master while supine. That might work better since you'd have proper blood circulation. I tried but can't do any long term exercise routines due to cfs/pem but when I was trying this I too decreased my hr and increased my endurance and muscle mass. I used to be athletic so I miss exercising. I've noticed since trying this multiple times that it takes me a few weeks to really feel relaxed physicalky or mentally again. What didn't change from exercising tho was the results of my pmttt. I still had a 30 pt hr increase, petite mal and sob after 10 minutes. Imho, in my case the petite mal and sob are what's forcing me to lay down. I say that because if I'm busy with laundry, vacuuming, etc my hr will go up to around 130 but I don't have to lay down. It's standing up without moving my blood that's the problem. Hr during pmttt only gets around 110. I'm not sure what your last statement means. Can you explain that ? Thanks. D

Hi Rich, I'm not clear if this is digestive or not. Are you running a fever ? If you think this is acid, you could try sipping 8 oz of room temp or warm water with a 1/4 - 1/2 tsp apple cider vinegar or 1/4 - 1/2 tsp fresh lemon juice to see if it helps. This should take 30 - 60 minutes. You may need more ACV or lemon but that works for me. I'm concerned that the pain kept you awake all night. The last time this happened to me I had a serious kidney infection. The pain started out near my appendix but travelled up to my right kidney overnight. You may need to see a doctor asap to get this evaluated. Just be careful if you get flouroquinolones / antibiotics. I'm still not walking normally. Also, one of my kidney stones caused referred pain to the left of my belly button when it was actually stuck right below the kidney. So knowing the cause isn't always straight forward. The easiest to digest foods are typically bland chicken, peas, asparagus, peeled apples or applesauce and white rice. hope you feel better soon ... D

I tried Equate Sinus headache with 5 mg phenylephrine and 325 mg Tylenol a few times last year and noticed a small improvement in my OI. I got a kidney stone, unrelated and had to stop. I bought this pkg because I wanted the smallest dose of phenylephrine I could find in case I didn't react well. I read that phenylephrine works the same as pseudophredrine but it just wasn't as strong. It did unstuff my chronically stuffed sinuses and of course the tylenol reduced my pain. I'll try pseudophredrine today and let you know how that goes. I read that pseudophredrine was specifically targeted for nasal passages but I don't know why they said that. tc ... d ETA. RATS. I took it but had to race up and down the stairs a couple of times right afterwards and that got my hr up too high. Hopefully, it will come down enough before this med kicks in ... ETA again .. I don't know if it's related but my bp and hr remained in my normal range for an hour after taking this and I took a nap ...

IMHO, keeping a positive but realistic attitude is important but affirmations, etc don't work. It's great idea for selling books or dvds if you don't want to accept any responsibility for what you're saying. All disputes would be met with "But you didn't really believe it, did you ? " or "You didn't try hard enough" ... I say this because in 2005, when I first realized the importance of diet, and some of my symptoms simply disappeared via diet change, I got really po'd at the medical profession. More so than now .. lol ... But even in that state of mind, I started walking normally in Sept 2006. tc ... d

I really can't be upright for any length of time on my bad days so I lay down, watch tv and get up when I have to. Any attempts to fight this are met with slurred speech, imbalance and severe problems with fine motor skills. I have ME/CFS so my bad days are mostly due to PEM.

http://forums.dinet.org/index.php?/topic/15794-nicotine/ This has come up here before. It looks like it's worth a try. I priced nicotine gum (lozengers maybe ?), tonight and 30 - 2 mg was on $12 at Walgreens. I saw that one cig has 1 mg of nicotine so I wanted to start with the lowest dose I could find. I may try the patches instead tho. I saw someone in the thread above was cutting them up. I googled Goldstein but couldn't find enough info on his use of nicotine. Prohealth has an article on his "standard" practice tho. tc ... d ETA .. Hmmm, it seems that smoking it may provide more benefit ? http://www.wired.com/science/discoveries/news/2007/06/nicotine

Hi, I'm a non smoker too and I'm interested in trying this. Out of curiosity I tried 1 cigarette in December 2012 and noticed an improvement in my cognitive abilities. Or at least thought I could think better ... lol ... It was late in the day tho and I was already exhausted. The coughing stopped me from trying it again. However, I'd like to try either the gum, patch or "chew" or "snuff" sometime to see it it would help. Have you considered which source of nicotine you'd like to try ? It took me awhile to figure out that I needed to google nicotine benefits and not just nicotine. It seems everyone is trying to stop this habit. http://health.howstuffworks.com/wellness/drugs-alcohol/nicotine-health-benefits.htm I didn't google dysautonomia and nicotine yet.

Bummer .. I hope you can get this stopped ... FWIW, have you tried listening to some relaxing classical music while this is going on. I found out that if I listen to this type of music it occupies my thoughts so much that I can pretty much ignore everything around me. I found a relaxing classical music CD I like from Walmart dot com by googling relaxing classical music. Only the music on this cd works like this for me tho. Others were too stimulating and Kenny G was too jazzy ... tc ... d I hope it's not a problem that I posted this here. Walmart allows you to listen to the tracks if you click on the cd. http://reviews.walmart.com/1336/4532730/the-best-of-most-relaxing-classical-music-in-the-universe-reviews/reviews.htm PS. I'm not a medical professional so keep that in mind. But if I were you, I'd pull out all the stops right now in order to get some sleep. For me this would mean taking a little extra melatonin, Klonopin, Theanine, Natural Calm, Benadryl, etc etc .. Not sleeping will make all my symptoms worse so I don't allow that to happen anymore. When I complained to my doctors about this at one piont I was told not to worry abuot it. That eventually I'd sleep ... what a load of dark stuff ... lol ...

Good point Ram. Our other immune system problems can flare and create a crashing feeling too. I try to forget that I have these. lol .. Caffeine can help me get out of this sometimes too but only for a day or two. Any more and I just feel more exhausted and start having significant neuro symptoms like slurring my words or trouble doing anything that requires my hands, like chopping food, etc. My cure for the jitters is Klonopin, theanine or Natural calm. Klonopin is working best for me now but theaine used to work as well. I never do well if I try to function on this cycle (caffeine => Klonopin) tho. My neuro problems just get worse ... I wonder if the caffeine is helping because our adrenals need the boost ? I've discovered a triple expresso gelato (Ciao Bella) that works better than coffee for me. It gives me a boost without making me jittery. I have no idea why. I'm allergic to dairy so I wish I hadn't found it ... lol .. TC ... D

I have ME/CFS as well as OI so this sounds like post exertional Malaise to me. It's where a person gets most of your symptoms and it lasts for 48 hrs + typically. I get most of your symptoms with PEM except the pain. Mine lasts for 2 - 3 days if I rest. KOW .. I used to get pain with PEM but not since changing my diet to avoid my food intolerances. I noticed that you have MCAS. Do you think it could be from that ? Do you have a working treatment regime ? I have 10001 allergies but not sure if I have a MCAD. And since I don't have mine under control I can't say if treating MCAS should eliminate PEM. BTW, I used to try keeping up an exercise routine where I got my hr up, etc until I discovered it was only keeping my body in a state of low grade chronic PEM. Sorry, I couldn't be more help ... tc ... d

Theanine, found at most health food stores, is an alternative for Klonopin so that might work. The first time I tried it was when I'd been sleep deprived for a few weeks. I took 100 mg every 3 - 4 hrs for a couple of days and then I stopped needing it as often and only took it for sleep. Valerian root is good too but stinks. I used to make a tea from it. Hope you feel better soon ... D PS. I take Klonopin nowadays instead of Theanine because it works better for my myoclonus. The downside is that if I have to go up on the dose for any reason, stress, too much coffee, sudden illness, etc etc it takes me awhile to get back down to my regular dose because I feel shakey. So it definitely has addictive qualities.

Can't wait to hear what you decide. I was reading the comments on that Zoot page and saw some say the waist wasn't tight and I wondered how that would work for us. I've only tried compression garments, spanx bottom type, twice now and they seem to help but both hold my waist in really tight. I seem to need it there. When I tried on the upper spanx I didn't feel any thing but I notice a difference with the bottoms right away. These get really uncomfortable after awhile whenever I'm just sitting tho. I can't imagine sleeping in something like this. Have you tried the spanx type ? Or are you just using the compression hose ? I haven't tried hose yet.

He has ataxia, can't maintain balance when standing, too tho and from what I've seen that's not part of POTS testing. I don't have ataxia anymore but I have POTS. I was guessing metal toxicity from his job. I cracked up when I read that they initially diagnosed it as anxiety in the ER of all places ... tc ... d

Thanks for posting this. Pricey ! I haven't tried these but I found this part very interesting. Maybe compression is more important for us than I thought it was ... tc ... d

Great to hear you're getting some answers. Hope it all works out for you. I hadn't considered seeing an immunologist. Well actually my allergist is an immunologist too but from what I could tell he wasn't up on the newest mast cell info. When I first started taking Zyrtec several times a day it helped my OI but then it stopped helping. I suspect its because I got into eating too many of my known trigger foods tho. FWIW, I'm allergic to most things on the planet if you look at my skin prick test. I'm not sure what that means in masto world ... tc ... d

I live in central florida. I was impressed that Medicare paid for everything. FWIW, I don't know what diagnosis codes, if it matters, may have helped in getting them to pay for these. I only know that when I go in for other blood work, etc, the office that's running the tests makes sure that I have the appropriate medical diagnosis code to justify getting the test. I see a doctor who used to be a traditional doctor complete with hospital priveleges, etc etc but became more interested in holistic treatments when she noticed that her patients were having success with some of these. It's great because she knows which traditional tests to run as well as holistic. So you get the best of both worlds ... Well worth the money ... Dr. Terry Wahls talks about how as an MD she didn't learn how to heal the body and only learned this once she failed to respond to traditional MS treatments. This is in her TED video ... She was wheelchair bound and now is able to go horseback riding or ride a bike .. tc ... d