DoozlyGirl

Hi puppylove, Nausea is a big issue for me as well, likely tied to my significant OH (where my BP can plummet upon standing), which worsens my nausea. Meds, like zofran didn't help at all. I have found that Aveda Comforting Tea, which contains licorice root, peppermint leaf, sweet fennel, and basil, works wonders for me. I use peppermint or ginger for milder cases and save this tea for signifiant cases of nausea, so I don't become "immune" to its effect. I carry a few tea bags in my purse and have been known to purchase a cup and hot water from a gas station so I can make a cup while away from home. You can buy it online or at any Aveda hair salon and it comes in loose tea or bags. I have also recommended this tea to others with great feedback. This tea has even worked well for two friends going through chemo. Best wishes in finding a way to diminish your nauea. Lyn

Thanks TCP for your response. Your flushing extends on more of your body, but I do get a flushing after taking a shower, wherever the water hits (hot or cold). As I have been able to untangle my symptoms over the past two years, It is more clear that flushing/blotching immediately precedes pretty immediate GI evacuation (top and/or bottom) and then the cascade goes through dizziness, nausea, tinnitus, brain fog, palpitations, blurry vision, and by the time I figure out what's going on, my OH is in high gear. All these posts are helpful in sorting out the "chicken and the egg" . Best regards, Lyn

Sue, From my reading and experience, the best bet is to have local endo refer you to Mayo Endocrinology. Mayo will request records and then will take 2-4 weeks to review. I suggest working with your endo office so you know which records are sent, ensuring your lowest blood glucose are there along with your elevated insulin levels. Were your insulin, proinsulin and c-peptide elevated during one of the hypo serum glucose draws? If not, get the local endo to order a standing order for a hypo panel (above three insulin tests, sulfonurea and beta hydroxy something) during one of your reactive hypo attacks. If you drop to 39 and have elevated insulin at the same time, this should put you on the fast track for further work up at Mayo to evaluate for insulinoma. Good luck and please keep us posted. Lyn

Thankful, Thank you so much for your post. My only 5HIAA was done about 6 years ago, and was not done during a flare, so not surprising it was negative. Will revisit the 5HIAA and ask for a CgA (which I have never had done) and ask about the other tests. My team of physicians are pretty willing to help me, especially since my symptoms are escalating. Thanks again, Lyn

Had bloodwork for Porphyria last year, which came back within expected range.

Thanks Ana, Here's hoping that maybe some of my experience can hlep you. Allergy testing showed I reacted to 25+ allergens, the majority being foods, with the rest falling into the environmental category. Once I learned this, I could stay away from those allergens. Testing pointed to dairy, wheat (not gluten), corn, eggs, tomatoes, potatoes, rice, oats, MSG, sulfates/sulfites, nitrates/nitrites, with dairy as the most significant food trigger. Perfume, church inscense and allergen testing for cat has sent me into anaphylaxis/oid reaction requiring epi. Eliminating what I could did slowly lower my allergen threshold. Allergist told me white flour doesn't have enough wheat to be a factor, so I eliminated whole wheat, went back to minimal white flour. Allergen drops did help to significantly drop my blood levels for all still react to but dairy, but don't mind since I found almond milk. Did elimination diet for months, by adding foods I rarely ate previously. Added sweet potatoes, lots of veggies, organic chicken, and eliminated processed foods, converted meds to non-allergen ones. That was when I learned every med I was on at that time had corn, several had lactose and one had gluten, which included wheat. I had also began reading food labels and medication package inserts for everything I put into my mouth. Once I got the hang of it, I went though my personal care products. I switched my shampoo, conditioner, toothpaste, body lotion, and body wash to fragrence-free natural products. Good thing I studied chemistry in college, because that was pretty tough to understand those ingredients. I got rid of room fresheners, candles with smells, furniture polish, conventional cleaning products/detergents and began to convert to natural or at least fragrence-free products. I began using essential oils, such as eucalyptus and tea tree oil, vinegar, baking soda to replace my other products. Family/friends stopped wearing perfume near me. Treating the candidiaisis was a critical part of my treatment. I had previously been on tons of antibiotics for years and had 7 surgeries in 5 years. I was battling cyclic sinus infections, URI's UTIs and skin infections. Once I got off the antibiotics, eliminated triggers and sugar, took HI, H2 gastochrom, added a prescription strength liquid magnesium and probiotics, my immune system settled down and I became much less reactive. Not too hard to see how MCAD could explain this, huh? Now gearing up for finding someone to help me with all this. Best wishes and let me know if you have any questions. BTW, do you react in detergent aisle at grocery store? Lyn

Hey Sue, You go girl! Best Wishes!!!! Insulinoma was ruled out with me because after 2 months of home glucose testing, as well as CGMS while I was somewhat symtomatic, we never caught my sugars below 60. My Mayo trained endo felt anything below that would open up those doors for me. So your glucose of 50 should be considered! I still wonder about your adrenal adenomas.... Hmmmmm. My symptoms correlate to plummetting reactive hypoglycemia (270 to 74 in 9 minutes) , but not asbsolute hypoglycemia. My autonomic neurologist feels that the OH is causing my eratic sugars, which the endo thought my elevated insulin and eratic sugars caused the OH. Mayo denied me as a patient so good luck getting in! Do you plan on just showing up? May take a week to get in, but read of several who have been seen with that strategy. If you are getting a referral, make sure you know what records are sent. They only want 30 pages faxed to review. They will take more by mail. My sent records were incomplete, and the department who sent them couldn't tell me what they actually sent, so keep that in mind. Meanwhile my autonomic neuro is suspecting immune system. Please keep us posted, Lyn

Thanks for the responses. Sorry you are all going through this. Have gone through something similar in the mid 2000's, and after some hard work did get my immune system to tame down, but something has it torqued up again. Katie - Will see if I can find a immunologist in my state that may be able to help me. Would love to hear more about your plan that your doc comes up with and hear about the testing he did on you and what you have learned from his approach. Ana - Thanks for the tip on N-Methylhistamine and prostaglandin D2. Yes, pheo has been ruled out four times, but it has been 6 years since my last urine test to rule out carcinoid. Long before autonomic dysfunction was diagnosied, I had gone through extensive allergy testing and taken sublingual drops, H1 and H2 and even gastrochrom for years. My allergist told me my mast cells were an issue but this was 8 years ago, before MCAD had gained support. A complete change in my diet and elimination of frangrence in all my personal and home products, as well as treatment of chronic candidiasis really improved my reactions, to the point i could manage any symptoms. Intersting how the flushing re-emerged recently which coincides with skin candidiasis returning, and now I am back to being supersenstive again. Am now wondering if the recomended approach to stabilizing my blood sugars set me back down this path (increasing carbs/wheat and short term glucose tabs for plummeting sugars). Already working on the candidiasis and elimination of triggers, which is easier this time around since I have an idea of where to start. Learning so much from the mast cell forum and this one to help fill in the blanks. There is so much more information out there on mast cell disorders than when I dealt with this in the mid 2000's. Maiysa, my pupils are mostly really small, almost pinpoint. Will post on the diated blood vessels theory when I learn more. Thanks again, Lyn

Hi everyone, Haven't posted in a while. Previously, my endo was considering insulinoma, but that was ruled out and abrupt sugar and insulin spikes are now considered to be related to extreme stress response to my significant orthostatic hypotension. During my last appointment with Autonomic Neurologist, he was concerned about my intense facial flushing, red blotches on my neck, and raised red bumps on top of my hands. Sent to dermatology, where they saw the same symptoms come and go over the course of my appointment. My dermatologist ruled out systemic mastocytosis with tryptase of 2.5 (normal to 11) and skin punch biopsy of blotchy skin on upper chest. Could really use some input from you all, especially curious if any of you with orthostatic hypotension +/or autonomic neuropathy have non-itching flushing or blotching? Dermatologist originally thought blotching was chronic hives and send me home to take 3 zyrtec a day and eliminate red and yellow food dye from meds/diet. I never had a problem with zyrtec before so took 1 (generic, white pill) for 5 days without issue, then added a second pill for 5 days before adding a third pill. The day following the third pill, I started the worst 3 day episode of OH that I have had in 2 years -- BP 110/70 while laying, 166/110 while sitting then 88/66 while standing. At the time, I was taking 75 ug Levoxyl, 20 mg verapamil, 75 mg ranitidine and 5 mg zolpidem. Since I had been titrating the verapamil up from 10 mg/day over the previous three weeks, I kept at the 20 mg while adding zyrtec. After the 3 day OH episode, I awoke the next day with more energy and clarity than I have felt in 5 years. I kept busy and enjoyed this reprieve until it lasted all night. Even with several attempts to sleep, I was awake for 40 hours before finally sleeping but towards the end my family said I was wired - talking really fast, bouncing off the walls. This is how I recall feeling prior to my world changing due to AN. After I finally slept, I awoke the next morning with a 14 hour migraine. Day 3, stopped both the verapamil and zyrtec until I figure out if I should restart, but now wonder if that triggered migraine. Consulted both physicians, who are at a loss and trying to figure out what to do next. Wonder if the combination an addition to zyrtec dose is involved with this reaction? Funny thing is, I often get GI symptoms with this flushing, so now I am looking at some mast cell connection, as others have suggested from my medical history. Also have dermatographism and extreme sensitivity to fragrance and history of anaphylaxis/anaphylactiod reactions treated with epi, as well as other numerous significant reactions/episodes (some triggered by meds, some by foods?). Learned skin biopsy didn't support hives, but did show dilated blood vessels. Since my blotching does not itch, is not raised and only gets hot, = not a typical histamine reaction. Dermatology wonders if flushing/blotching may be related to some type of vascular leaking due to autonomic neuropathy/orthostatic hypotension. If it's not histamine, could this leaking be caused by a different mast cell mediatior? Neither neurologist nor dermatologist are familiar with MCAD, but both are looking into it. Dermatologist felt that the concept of MCAD is plausable to describe my odd presentation, and encouraged me to continue down that path, especially after I shared a synopsis of what I learned in my research, and connection to autonomic dysfunction. Would love to hear any personal responses with flushing and blotching and reactions to high dose antihistamines/zyrtec. Been on the Mastocytosis Society website, DINET archives, and pubmed, now looking for personal experiences. Thank you for your input and thoughts on my current episodes. Lyn

Hello everyone, Wanted to share that while meeting with my endocrinologist to learn the results of my CGMS (continuous glucose monitoring), she offered to refer me to any facility of my choosing. Interestingly, my CGMS results were essentially normal, but since I was already following a pretty controlled balanced 40/30/30 diet, she wasn't surprised on the results. She was extremely concerned of results of the home glucose monitoring I have been able to catch. Within an hour of eating I went from 108 at fasting to 230, then dropped to 74 within 9 minutes. Not too suprising I had a migraine and was vomiting at that time. I also have documented 60 at 90 minutes after eating dinner, when values are expected to be closer to 120. My symptoms are triggered with eating, so to level out the swings, I have to eat often. My elevated random insulin, proinsulin and c-peptide in addition to my autonomic neuropathy opened the door for referral. A really rare pancreatic tumor called insulinoma triggered by food is definitely at the top of the list. We'll see what the specialists at Mayo have to offer, if they even accept me as a patient. Anyone referred to two different specialties at Mayo? I would love to hear of your experiences or any tips. Thanks. I really appreicate all the information this site has given me.

Victoria, thanks for posting this topic. Another woman with autonomic neuropathy (for over 25 years), whom I met locally, has had major issues with both types of inconinance, and found great help with advice from the paraplegic community. My own episodic urinary stress incontinence is triggered by sneezing, and worse during allergy season. Last winter I had a sinus infection that wouldn't improve with my non-medication, natural techniques. I broke down one evening and opted to take a sliver (1/4)of 24 hour sudafed. Not only did it improve my sinus congestion, my incontinence stopped within minutes, even though I continued to sneeze. I now carry a few quarters of 24 hr sudafed on me and which help with the stress incontinence during awkward times away from home. Mind you I don't have POTS and tachycardia for me is not triggered by that low of a dose. Best wishes in getting to the bottom of your health issues.

I am unable to work due to the unpredictability and severity of my crashes. My good days average 2-3 days per week, that allow me to grocery shop, go out for coffee/tea with a friend, cook a meal or have dinner out. I usually have 1-2 days per week where major crashes (and likely a migraine)keep me in bed all day. The rest of the week is mixed with lesser symptoms but I usually don't feel well enough to shower, yet alone leave the house. I only drive on my good days and then stay within a mile from home, monitor my blood sugars and eat a granola bar before driving.

Maia, Thanks for sharing your experience of fludrocortisone. Have had a filled script for months, but haven't started it yet. Will definitely want to follow though with this path first. I have read up on "hypoglycemia unawareness", when the low blood glucose (as in 40 in your case) does not properly activate the adrenegric system to provide an adrenaline rush, which is the body's way of screaming for help, to get multiple body systems to get the sugars up. This unawareness has been documented in diabetics and those with autonomic dysfunction/dysautonomia. I've also read that 3 hour GTT may not capture the hypos. 40s are not healthy, no matter if you have symptoms or not. Are you checking your blood glucose at home? This may very well provide some objective date to get the attention of a physician. You don't need a physician script for a unit and I buy my testing stips on Amazon. Best Wishes, Lyn

Thanks for your responses and well wishes. As you all know, the waiting is often the worst part. Hyperplasia could also be the culprit, but at least my crashes have now gained the attention of two endos, my neuro, neuro NP, and dietician. I can just feel the momentum picking up and hope to actually get somewhere. Julie, My endo said the same thing: good thing that the numbers come back on their own, but since I react to food (postprandial hypoglycemia), this presentation is rare, but well documented. So may not have to do the 72 hour fast. CGMS is quickly replacing a prolonged fast in diagnostic algorithms. Sue, my endo stated that a calcium stimulation procedure in interventional radiology with an interventional radiologist who has performed the procedure before(all the better if trained at a large academic center) is the most reliable test for localizing an insulinoma preop, and is her recommendation if my CGMS comes back with a value below 50. Recently read that EUS captures only 77% of tumors, but captures more if done in conjunction with CT. Can't find the link now, but there are great stats in a emedicine.medscape article on insulinomas. thankful, thanks for the heads up on the consensus guidelines. Will defintiely look those up. Naomi, will definitely post again when my I learn my results. Thanks again for your support. Lyn

Hi all, I have recently posted details regarding blood glucose issues as the cause/trigger of my severe cognition issues, blurry vision, migraine headaches, vomiting, forced sleep, and adrenaline surges. Saw my endo today, who admitted that she is troubled by my significant swings in BG, and that the severity of my crashes, along with my previous labs, and adherance to a clean diet all point to insulinoma. Since she is about to have a baby, and is moving over 60 miles from here to another healthcare system, today was my last visit with her. I am anxiously awaiting results of my continuous glucose monitoring (which was ordered by a different local endo), which ended yesterday. I did have a lousy day on Sunday, hopefully the CGMS will point to a definitive cause, so I was surprised when she graciously counseled me on "how to choose a pancreatic surgeon, which tests I should ensure are ordered to localize a pancreatic B cell tumor and where I should have my imaging performed". She will talk to her partner about me, so the office will be able to refer me to other specialists if my CGMS demonstrated a value below 60. I am wondering if anyone with autonomic dysfunction has already been diagnosed with insulinoma? I've read all the insulinoma sites, but those forums are not active, so I thought I'd try here. Would love to chat with someone who has been through this. Thanks for your responses.

Had my CGMS applied today and it was a breeze. No restrictions and will wear it until 3 pm on Monday. Had several episodes of neuroglycopenia today and one major crash, so can't wait to see the results. I saw my nutritionist in the hall today and asked her about my 230 glucose. I questioned if I should be open to diabetes and she said while they have no direct experience with beta cell tumors, she's had several conversations with the endo and they are highly suspicious of insulinoma. Hopefully the CGMS will shed some light... Sue, I learned that the Medronics unit is set for a low end of 40, so will not capture below 40. The diabetes RN educator said it does capture hypos. Please let us know how it goes with your procedures. Naomi, looking at your GTT, I wonder if your results indicate reactive hypoglycemia (RH)? I routinely have 1 and 2 hr postprandial values that are lower then my fasting and they called it RH, especially since my diet is pretty clean. Let us know if you decide to play with your diet a bit and post your glucose values.

Naomi, I agree with Sue, since glucose is expected to raise after eating and in the GTT, and yours didn't, this is something to look into. I wonder if your symptoms are related to the velocity of change, not the absolute values, and by the time you test, your ANS kicked in to get glucose levels to a steady level. My response was directed at how your values seem to be pretty steady, which is so different than mine. I've even seen 50 point changes in 20 minutes, and never go below 70, but have symptoms throughout the day. Hopefully the CGMS will shed some light on this for me. The endo wanted me to see the nutritionist to assess my diet and rule out diet as the trigger to my glucose swings. If I would't have already changed my diet over the years, we would be focussing on eliminating sugars and increasing fiber/protein at this point. Have you checked out Blood Sugar 101 and the pages on insulin pulses? Maybe this fits in your case? Regards, Lyn

Hi Naomi, Are you having any symptoms today? I like to start out my day with black tea and 1 t sugar and since I usually don't eat sweets, my nutritionist is not concerned with a T or two of sugar a day. I will crave a square or two of dark chocolate for a few days each month. Glucose levels are expected to rise a bit after eating, and you are right that there is more to it than just staying above 70. The autonomic nervous system is triggered to maintain blood sugar levels in it's balance act with insulin. I'm thinking that your values means your pancreatic cells are producing adequate insulin and the insulin is sensitive enough to help process the sugar/carbs in your diet well enough to sustain consistent blood glucose values. Since your GTT was in the 70's and your fasting is now in the high 80's, I wonder if this means your body is working a bit harder these days to process your carbs/sugars. Was your diet in the past few days similar? I've read that yesterdays intake can dictate todays set point and swings. Maybe this will help. My body is unable to maintain blood glucose levels and process a carb load that exceeds 30 g carbs without eating 10-15 g protein. Protein and good fats slow down digestion, giving more time for my body to react to the carbs. Without protein, my glucose levels climb above 140 within two hours of eating two pieces of toast. At that level I get symptoms. I also get symptoms when it drops below 90, and I suspect due to the quick fall before glycogen is released to raise blood sugar levels. Best wishes, Lyn

Interested to see responses ot this poll. Can you add autonomic neuropathy as a form of dysautonomia? Thanks.

Sue, you hit the nail on the head - adrenaline surges, ughhhh! Thanks for reminding me to keep that in mind. I think I will begin to test my glucose laying down and see if that changes my baseline fasting and post meal values. Unfortunately, I have yet to find a doctor who has the initiative to delve into my issues without much preconcieved thoughful planning and preparation on my part. Call it Plan A, B, C, D for what I am asking for every time I see a new or existing practitioner. I'm like a dog with a bone and once they figure out I know what I am talking about and that they can't necessarily answer my questions, they agree to order a bunch of tests. I am just so lucky that the recent batch of tests in this domain are all coming back abnormal! I need to figure out what comes first, the adrenaline surges or the glucose swings. Naomi, once I considered that my blood sugar control is likely as gooofy as my blood pressure or heartrate, then it became easier to figure out how and when to test. Routine orthostatic blood pressures never caught my orthostatic hypotension, because the procedure used was sloppy. Once I figured out the textbook procedure then "challenged" it, I could confirm my BP/HR issues. Same thing with home sugars testing. My endo gave me little direction and this really didn't get me anywhere. I then figured out the procedure they tell those with suspected diabetes to follow. Test first thing every morning before eating anything, which establishes your baseline fasting sugars. Test 2 hours after you eat, but be sure to log what and how much you are eating. This can determine your carb load at it's peak glucose in your blood, which is readily available to your brain and muscles. Test again with symptoms. Diabetics who are trying to obtain glucose control with diet test at this interval and diabetics on insulin may have to test before and after meals to assess their insulin needs. I was given the range of expected 70-120 for nondiabetics. I took it several steps further. For multiple nonconsecutive random days, I would test first thing in the morning, before every meal, one hour and two hours after each meal and just before going to bed as well as everytime I had symptoms. This established my trending range, so I know what to expect. My range is between 70 and a few mid 140's on a balanced diet. Reactive hypoglycemia was already suspected, but confirmed with glucose home testing. Then I began to experiment with diet. I know I do ok with less than 30 g carbs (2 slices of bread) each meal/snack. I'd test a day with minimal carbs, then a few days later with more carbs to see what my glucose control is. I kept in mind that one days diet and glucose control sets up the next days glucose and insulin swings. Once my nurtitionist could determine that diet was not at play in triggering my spike/symptoms, this opened the door to massive swings as the trigger. Testing this way can be expensive, but I have found it is chepater to get test strips on Amazon than through my insurance company/pharmacy. I am hoping CGMS will allow for enough data points to better assess what parts of my glucose metabolism is messed up. This way I may be able to figure out how to repair that missing part of the chemical reaction. If only I would have been a better biochemistry student in college! I am using my undertanding of how the body is supposed to work then figuring out what I can test to further show my specific impairments, which has lead to a methodical rebooting of various body systems. I fully believe I can fix me with the right experts as my guide. I've already made tons of progress over the past 18 months in rebooting other systems. Please let me know if you have any questions.

Thanks for sharing that Drs Chelimsky are coming to Milwaukee. Already heard Dr Jeredeh is headed to Stanford to start up an autonomic program there, but wondered who was coming to the Medical College of Wisconsin? As Case Western looks to fill its vacancy, be prepared for a shift to occur in the autonomic experts. Meanwhile, an autonomic neurologist named Rose Dotson had a neurology practice in the Cleveland area, the last time I looked her up. She is at one of the Case or University satellite hospitals there and has previously been at the Medical College of Wisconsin, Aurora Health Care, and Mayo. I saw her for migraines long before my dysautonomia showed off its true colors.

Hello all, Naomi and Sue, I did figure there would be a needle in my belly with large tegaderm (clear plastic to hold it in place.) I will be sure to write more after the procedure. My A1c has been on the high end of normal for several years ranging from 5.5-6.0. Since this value is used to simulate a 3 month average of blood glucose, this value would miss capturing any of the variation, as highs and lows are averaged in. But the mildly high end of normal value does correspond with my fasting values sitting just above 100. My previous fasting glucose at the clinic was at 85 in June. Haven't read about the logic differences between CGMS and lab testing, but I have read that home testing has definite accuracy issues compared to lab testing. Home monitoring in general can be up to 20 % off, 10 % on either side. I suppose this is why the nurse has had me test my home monitor along side the clinic glucometer. Sue, Wondering why the endo profession accepts home testing and just deals with the differences, while yours is using this as a justification against CGMS for you?? I recall learning about a generalized controversy between plasma and whole blood testing for all types of testing some 20 years ago while I worked in a hospital laboratory and performed insulin. glucose, and other hormone assays. I too am looking for trends, but what I can tell so far with home testing is that my symptoms do correlate with values dropping below and escalating above my fasting glucose for that day. For example, my morning fasting glucose was 109, before I could get downstairs to eat, it dipped to 96 concurring with symptoms. After eating a balanced small portion meal, with 40% carbs, 30% protein and 30% fat, my levels dropped 2 hours later to 91, again occuring with symptoms. This has lead to a reactive hypoglycemia diagnosis. I've read that those ranges for hypoglycemia (values below 50 or 60 etc) are actually action levels for those on insulin/diabetic oral meds ONLY. This 50 cutoff does not apply to NON-diabetics. My nutritionist said it's important to figure out where my body has set up it's own thresholds, since my autonomic neuropathy negates any established values out there. While my values above are no where near typical hypo levels in diabetics, blood glucose is expected to rise 2 hours after adequate food intake, not drop. Assessing the trends can help determine where in the glucose metabolic pathway there are issues. I am really interested in learning how to reset my glucose thresholds. Naomi, I am learning that eating a diet with a 40/30/30 balance with small portions every couple of hours should control these swings and over time, can promote your body to reset it's panic values and prevent the ANS from dumping out counter regulatory hormones to get the liver to convert glycogen to glucose or pull glycogen from the muscles to make up for the real(below 50's) or false (swings) dips in blood glucose which leads to typical hypo symptoms. Sue, my 230 blood glucose occurred since I have been home testing and neither endo knows about it yet. I believe my random elevated insulin of 109 along with dx of neuroglycopenia (cognitive issues relieved with food = assumption that my brain is craving glucose and just shuts down to conserve energy)and reactive hypoglycemia established medical necessity to satisfy my insurance company. Thnaks for your posts.

Hi all. I've reading up on glucose metabolism and while the autonomic nervious system is integral in kicking in whenever blood glucose gets too high or low, most of the sites are related to diabetes. Just learned that the pathway to diabetes has been ongoing for over 10 years before fasting blood glucose elevates. New information emerged recently about the importance in post-meal blood glucose, even though most endos have yet to act upon this important finding. Have yet to find published solid links between autonomic dysfunction, glucose dysfunction AND non-diabetics, yet alone patients with autonomic dysfunction. Most published data focusses on diabetic autonomic neuropathy, but of course that means the person is further down the diabetes pathway (full blown cell death of pancreatic beta cells which translates to lack of insulin production/sensitivity). Since I have learned that my autonomic neuropathy is absolutely hampered by glucose metabolism issues, I am on the search to understand where in the glucose metabolism pathway my issues lie. This is all helping me better understand my symptoms, and the timing of my symptoms in relation to food intake. There is a whole undiscovered/underpublished world out there in understanding the autonomic nervous system, and not much published data linking our stuggles, but after reading through numerous sites, there is little doubt how much impact glucose metabolism plays in fatigue, muslce pain, cognition issues and brain fog, and stability in the ANS. One of the best sites in describing all this is Blood Sugar 101, written by a diabetic. I was particularly drawn to the article on "How Blood Sugar Control Works-And How it Stops Working." I recommend this site to anyone who has or is considering blood glucose/insulin issues as a piece of their autonomic dysfunction. I will have CGMS beginning Sept 8 until the following Monday, and my insurance is covering it at 100%, due to my previous diagnoses/labs. A Diabetes Nurse is setting me up. All I know is that it goes into my belly, is taped in place and there are NO restrictions. There is a monitor which will track my meals, symptoms, etc, but I also need to log individual food items and quantity, description of symptoms and other interesting notes. We are hoping to catch the abrupt shifts in glucose, which drop anywhere from 30-50 in 15 minutes, which are likely well before my ANS kicks in and gives me symptoms. I was told the body often recovers from these shifts and often missed with home glucose testing. The article above describes how insulin is released in phases and why insulin release fails. I may not have true hypos (glucose that drops in the 40's or below), but the symptoms of these abrupt shifts are just as real, even if they are known as false hypos. Blood Sugar 101 talks about resetting the relative threshold for blood glucose, which can eliminate these shifts/symptoms. Sue, maybe my experiences could help convince one of your docs to reconsider ordering the test. My local nutritionist is actually the one who recommended it, then rallied the onsite endo to order it for me. I did need to see this new endo before she could order it. The endo who originally ordered the hypo workup (60 miles away) is leaving her practice, but I do get to see her one last time before she transfers patients to her partners. lizababy, they recommend 70-120 as the blood glucose range for non-diabetics. Fasting sugars staying below 100 (some say below 90). Timing of the tests after meals is important. Your 100 right after eating is good, but the tests are 'timed' to be 2 hours after eating, as this is when the meal you just ate is actually considered to reach the blood stream at peak. Naomi, have you been testing sugars at home? If so, any values falling outside of this range 70-120 could very well prompt CGMS. I have read that two random tests above 200 could classify as diabetes and that anyone with normal glucose metabolism will never go above 140. Would love to continue this discussion after learning more. Thanks for your input.

Hi all, I have been away from this site for most of the summer. Wish I could say I was off living life, but ongoing computer issues (virus, then a faulty hardrive on 4 month old computer) along with overwhelming unpredictable swings have really taken a toll on me. Now that I got my computer back and we've connected my worst symptoms to glucose dysregulation, I thought I'd post. Looking forward to any thoughts or previous experiences which relate to glucose metabolism issues. I've read all related previous posts, but seem to have a different twist to the expected sugar issues. My crashes consist of blurry vision, severe onset of congitive issues (as if I was unplugged), severe myalgias, then forced sleep for 90 minutes to 3 hours, when I awaken with tachy, sweating, diaphoresis. I knew we were on to something when eating protein with every meal/snack, including at bedtime, has allowed me to awaken/be alert most mornings! Makes sense, huh? If my body doesn't adequately regulate blood pressure, heart rate, sweating, temperature, etc, why on earth hadn't I connected my issues to food and blood sugars?? A new endo ordered a fasting blood hypoglycemia screen (glucose,insulin, c peptide, proinsulin, insulin AB, etc) to be collected during my symptoms, When all came back normal, she had me come back for a radom draw of the above tests during symptoms after I ate. I had an insulin of 109, proinsulin of 41.8, c-peptide of 7.6 with glucose of 95. There are no reference ranges for random (non fasting)values of the above tests, but only the glucose of 95 is considered normal. Previously, a GTT showed insulin resistence with normal/minimaly elevated fasting sugars. I now know food intake has been triggering reactive hypoglycemia. A nutritionist evaluated my diet, which was ruled out as a source of my swings (nutritionally dense, allergen free, low GI carbs with protein every several hours, no soda, etc). I have been testing my sugars at home for the past month and range from 75 to one episode of 230, with symptoms below 95 and above 125. I was told that 70-120 was considered normal for non-diabetics, but my autonomic neuropathy has prompted continuous glucose monitoring (5 minute intervals for 4 days starting 9/8/11) to get a better idea how my body processes food, the levels which triggers symptoms, and identify my personalized "normal" range. Since "hypoglycemia unawareness" is linked to goofy counter regulatory measures in those of us with autonomic dysfunction, my medical team wants to better understand what my body is doing. Not sure what to anticipate -- diabetes, tumor, or just basic goofy "metabolic fubar" related to autonomic neuropathy, likely related to sudden shifts in sugars... Any one else with such high unexpected glucose levels after foods that shouldn't warrant the swing or had continuous glucose monitoring? Any other thoughts? Thanks for your input.

Since CTs only catch 44 percent of insulinomas, and other modalities miss many as well, most MDs only order imaging after biochemical confirmation (high insulin, at the same time as blood glucose below 60s, and symptoms) due to poor track record of finding them due to their small size. Lyn