Dizzysillyak

I have this too due to hyperinsulinemia. A gtt + insulin proved this. I find that if I eat limitted sugars and carbs, I'm ok. I need this for energy and brain function. But if I eat too much, the next couple of days i still feel horrible if I eat even a little sugar or carbs. I overdosed on dates yesterday and I'm feeling horrible from eating a small amount of blueberries today. It's like my body is frantically overproducing insulin in response to tiny amounts of sugar. I don't think it's affecting my oh or pots tho. I just finished doing 5 loads of clothes. I was wondering if there's a protein digestion link. I can calm the horrible feeling if I eat meat. Just meat tho, other protein source don't help. I want to try some pancreatic enzymes, trypsin, etc, to see if they help .. The other digestive enzymes don't. Tc .. D

I wish I could remember what test that was that showed my blood loss. Good luck tomorrow. I was thinking you may want to make sure you have allergy meds with you. I have a really good idea of how you're feeling so I hope you get some relief tomorrow. Please let us know how it goes. Tc .. D

The upside in going to the er was that my blood loss due to menses was measured. In just a day or two, it dropped enough to worry the er doctor. I have no idea what test determine that tho. On a really gross note, I left the er exam room in need of a good cleaning .. Tmi ..

Btw are you still using the cast iron pans ? Eating rare buffalo steaks cooked in these is what brought my levels up. I also cooked most of my veggies in this too for awhile tho.

I have a ton of allergies too and I was ok with it. I really didn't have a choice. At that point I had a standing order for a transfusion if I showed up at the er again. I was too weak even think of having a hysterectomy at that time but I was told that it was an option .. I was told that it would only take a few shots total not monthly. Fwiw. I had to change gyns while this was going on in order to get better care. My new gyn gave me the shot very quickly after he saw my records. If I hadn't been so sick, I'd have pursued legal action against the old gyn. Even the er doctor couldn't believe how useless she was.

lieze, Sorry to hear you're going thru this. I had a similiar experience years ago and my gyn gave me a shot to slow down my bleeding. I can't remember what it was but your gyn will know what it is. I was told that I might need multiple shots but didn't. Ablation didn't work for me. I suffered thru peri menopause hot flashes, spotting, etc. for years after this shot tho. I just never had the clots or massive loss of blood again. fwiw. If I had to do this over again, I'd get a total hysterectomy and avoid the peri menopause. Anytime, I had a strong estrogen surge my symptoms, esp allergies, made me to sick to function. Good luck .. D

Not me .. I didn't have any health training. If I'd known what I know now about our bodies, I'd have fought harder to get a proper diagnosis instead I got labelled with cfs. Imho, Failing the rhomberg, having lesions on my brain and failing the poor man's tilt table test, etc should've been evaluated further. My nightmare started after I caught a nasty virus or bacteria in 1990. I had uri's and uti's that just came right back. That was along with my neuro symptoms. Fwiw, it looks like whatever nailed me started or increased my gluten intolerance. It appears that my ataxia and most of my neuro symptoms were from gluten. After my recent experience with h pylori making my dysautonomia worse, I wonder about the viral or bacterial angle. Have you all been tested or treated for these ? I wonder if stool testing is more accurate .. Kudos to those of you in the health field who are helping us get a handle on this .. Tc .. D

I've gotten more into smoothies lately. I tried juicing but it was too messy and time consuming. My smoothies are made with fruits, greens, avocado, flax and water. No protein powders. I seem to digest these foods much easier like this. Tc .. D

Like so many others have said, I used this opportunity to find good doctors. I see an integrative doctor who's trained in traditional medicine as well as holistic so I get the best of both. Sometimes drugs work better and sometimes supplements and diet are needed. On a funny note .. We have a local doctor known for doing this and we all just laugh now when someone else gets fired. Tc .. D

It never did anything for me. I even had a bag of saline plus a meyer's cocktail with a glutathione push for 5 weeks in a row that never helped my dysautonomia. I have oh and pots and my bp still drops upon standing and my heart races after being up for 10 minutes. Salt loading hasn't helped that either. It would be interesting to see who it helps, what symptoms it eliminates and then maybe we can figre out why ... btw. I've been healthy at rest, supine, since oct 2007. I'm ony symptomatic upright. Or if I've eaten the wrong food, am hungry or had caffeine.

Hi julie, I'm not familiar with what's normal for heartrates. Is your's within the normal range too ? Is it possible that mine's lower because of my age ? I'm 56 and post menopausal so a lot of things are slower now. Hi rama, This illness is a real pain that's for sure. I'm still trying to nail down my good vs bad days. fwiw, i was making steady progress, kow, until I got h pylori and parasites. I'd even been dating for the first time in years .. The fact that I got both of these means my digestive tract is still weak tho. The h pylori and the treatment took a toll on me, but I'm coming back slowly but surely. It's going to take awhile to get my gut ecology back to where it was. Hopefully, we got all the h pylori too. Tc .. D Ps. Salt loading really helped yesterday. I forget to keep my salt intake up sometimes then wonder why I feel so bad .. .. Duh .. I'm only using 2500 - 3500 mg a day but because my diet is all natural I have to work at getting this.

Hi jenny, Your experience with a nutritionist mirrors what many people have said. Sorry to hear you're having such a tough time right now. At the risk of beating a dead horse, have you considered seeing an integrative doctor, both md and holistic ? They look for causes for illnesses and think outside the box .. Dr oz one of the best known but he has other well known ex traditional medical only professionals on his show. Dr mark hyman is another good example. I'd recommend getting tested for celiac disease too. When I first started going to my celiac support group meetings, I could barely make it because my body was so weak. This is all too common for newly diagnosed. Many of us have been very ill for years before we're diagnosed. Needless to say, most of us were very upset when we were finally tested ... It may not be that of course but it's one angle I know of that's being overlooked by the medical profession. Tc .. D

Digestion problems keep me awake too. I recently discovered that I was eating too much meat and eating too late. I simply don't digest foods like I used to and digestive enzymes stopped working for me. I'm down to 2 - 3 oz per meal and don't eat past 6 or 7 pm. I take melatonin, sun theanine and 5htp for sleep. They all work a little different. These won't work if your digestive tract is keeping you awake tho. An all natural, whole foods diet seems to help a lot of chronic illnesses. Dr tery wahls is the best example of this that I know of. Her info, videos esp, is on the web. Taking probiotics, either in fermented foods or supplements should help too. Go slowly on any changes so you don't shock your body. Tc .. D

Thanks jackie, I was having a *** moment and needed to vent. I've been having far too many *** moments lately and it's getting to me .. I have to get out and run errands today. Good point on timing too. I'll switch to nighttime baths and see how I do. Sorry to year that you're struggling too. We're seeing some impressive research, from members here too, but no cure yet. You reminded me that I still need to salt load to keep my bp up. I'll take 1000 mg in a minute and see if it helps. My petite mals and sob are causing part of my symptoms too. I didn't have sob today, just a feeling like all the blood had left my upper body all at once. It.s like someone pulled the plug .. Lol .. Tc .. D

This still puzzles me. I took a shower this morning and was forced to lay down afterwards. I was upright for about 30 minutes total. I notice that my body feels better initially upon laying down. It feels like the blood is finally making it into my upper body so my veins and muscles begin to relax. But, I get funny gurgling type feelings in my head, heart and lungs for at least an hour after laying down. I get that these organs have been deprived of blood and my blood vessels have been constricted but I'm surprised that I can feel it so well. I just needed to say this because I know some of you will understand this whereas others would think I'd lost it .. Tc .. D

Have you tried the elimination diet ? Ideally, we'd all be eating all natural foods that our bodies recognize as foods but in my opinion you should transition to this slowly to avoid withdrawals. Fwiw. The chemicals in gatorade and ensure would make me sick. In my opinion, losing 30 lbs in a couple of months isn't a good sign even if you're within normal weight limits. I believe this means your body has been in starvation mode for all this time which causes stress on your adrenals, heart, kidneys, etc. Fwiw. I've always had to work at keeping my weight up. I feel horrible if I drop too much weight and am in ketosis for a few days. Fats, nuts and seeds mainly, work for me .. Kefir, yogurt, fermented foods, or a good probiotic have helped me. I noticed during my h pylori infection stage that I couldn't swallow and kefir and fermented cabbage seemed to help. As for lack of appetite, I think your body could be in starvation mode and the only way to break this cycle is to eat. You may want to try a nutrituonal replacement along with your food. The only one I ever didn't feel sicker from was metagenics ultra clear made with rice. Tc .. D

I haven't seen any correlation between how I feel and the looks if my veins. My bp drops upon rising tho so I get symptomatic quickly. If I've been standing up too long, the veins in my feet begin to hurt.. And sometimes, the ones in my hands get engorged and hurt. Heck if I can figure out why tho .. Blood draws used to hurt all the time but lessened after I'd been on this diet for a couple of years. Now, they only hurt if I'm freezing or seriously dehydrated. Of interest tho .. I had 5 saline + meyer's cocktails last year. One a week. The first time I had this, my veins hurt so bad that it took 4 hours. The next time it took almost as long. The time was reduced each time until, I finally was in and out in appr 30 minutes. Painfree .. Sadly, that was the only improvement. I don't know if it means anything, but I have a sideways vein in one of my arms that makes drawing blood interesting .. Tc .. D

Kewl .. Did your doctor order a cdsa ? I've had 3 over the last 3 years, and mine never showed a bad bacteria until recently when I tested positive for h pylori and parasites. So far, I only understand the h pylori protocal. I hear you on getting to the root cause. While changing my diet has helped tremendously, I'm not sure we've found the root cause of me me/cfs/dysautonomia. I'm hoping this treatment will help my dysautonomia but so far it hasn't. It's early so I'm still rebuilding my gut tho. I still have gluten antibodies on all my cdsas too tho. Sounds like you're on the right path but just in case ... My integrative doctor has tested for soo many things that I'd never heard of that she's found positive in her other me/cfs patients so I recommend finding one of these doctors. Things like pregnenolone, dhea, as many nutrients as possible. She recommended some tests I can't afford like the alcat too. A good llmd might help too tho. Good luck .. D

I don't think I actually has celiac disease until 2005 and I had gluten ataxia from 1990 till 2006. And I have the dq2 gene for celiac disease. So, I should've been gf all my life .. Gluten was apparently damaging my brain before it damaged my gut. Dr hadjivassilou describes this. The tests for celiac disease and gluten intolerance are currently being disputed by a variety of doctors. Theglutenfile will explain this. A definition of the diagnosis of pots is given in the homepage here. I've had at least 4 different doctors perform a poor man's tilt table test on me since 1990. I started a thread on pheonix rising on how to do this at home. Just search for pmttt. I'm xchocoholic over there .. Be sure to read thru the posts because others talk about how different we can be. Tc .. D

Have you seen an integrative or functional doctor ? Saline iv's will only help some people short term whereas this kind of doctor will look for a cause. Many of us have food intolerances, esp gluten. Celiac disease is associated with damage to our solute transporters which would cause dehydration. Fwiw, I've never had more than one bag at a time, but these have never helped me feel better and yet I have chronic dehydration. Even 5 meyer's cocktails in saline didn't help my dysautonomia / oh And pots. Or my energy .. Tc .. D

There could be a connection between both of your daughter's disorders and gluten intolerance. The elimination diet and seeing an integrative doctor may help you get to the root cause of these. This kind of doctor will start her on the elimination diet in case you want to get started. Gluten and dairy are taken out first but slowly to avoid withdrawals. I wasted my dd's childhood takng her to traditional doctors who never looked for a root cause and gave her meds. She's now health conscious aka eating healthy, no grains, dairy etc and she's feeling great .. It was her diet making her sick. Me too to an extent. After 50 years of eating gluten, aka poison to a dq2 \ celiac, my body probably Won't heal ... Tc .. d

Are you taking probiotics ? I just went thru a round of two antibiotics for h pylori and noticed that both the h pylori and antibiotics made me oh and pots worse. It can take awhile to get the good bacteria back and using strong probiotics and a variety is key. On the oh, pots and novacaine link. I have these but i don't have any problems wih novacaine. The problem with medical research is they select studies that prove their point and ignore those that don't. Drug companies do this all the time. In fact, the fda just did this when measuring arsenic levels in apple juice. Dr bessert discussed this about a month ago on tv. Originally, he disputed Dr. oz's findings, only to agree later .. Also, if I were you, I'd consider an elimination diet. Many of us have food intolerances, esp gluten. Dr mark hyman has some good info on this. As does dr terry wahls .. Tc .. D

My body stopped being able to retain my temp a few years ago. So external heat sources are essential. I forgot to mention that when I'm running my heater in the house, I also have to keep the humidity up by boiling water on the stove and filling the tub with hot water. I feel horrible if get dehydrated from these. A dry nose is my first clue but I get headaches if I don't put some moisture back in the air .. tc .. D

I've had me/cfs/oh for 22 years now but mine started out with a virus or bacteria that knocked me off my feet when I was 34. I was a happy working mother of two at the time. I'm assuming I had pots all this time too but didn't confirm it until last year when it finally dawned on me to test my bp and hr after standing up for 10 minutes. Many of the symptoms I started with in 1990 are gone now, which probably means that I had gluten brain and gut damage for years. But my dysautonomia keeps me totally disabled. My bp drops 20 pts within 3 minutes of standing up so I start to struggle after that. While, I've recovered a bit in the last 6 years, via diet and supplements, I've also gained a couple of diagnosises. Seizures, lung scarring and paget's of the skull.. So, of course I have no idea where this is headed ... Tc .. D

Hi sue, We both have hyperinsulinemia so I enjoy reading your thoughts .. After reading that people who've undergone gastric bypass get this and hyperoxaluria (i have this too), I decided mine was probably from gut damage. I was wondering how your gf diet trial was going ? Fwiw, it can take awhile before seeing dramatic results. Also, wanted to mention that I have a freind who's bgl drops to 40 if she eats dairy. Granted that is just a trigger but avoiding it keeps her family from calling 911. Let us know how this goes .. Good luck .. D