DoozlyGirl

Thanks lieze. Tis gives me hope that I can control some of these crazy symptoms through diet. Already seeing some improvement by adding good protein sources when I eat every two hours. My mealtime portion sizes are significantly less, so hope I can keep from gaining weight. Lyn

Hi Chaos, OMG! I can so relate to your battery analogy. I often describe my episodes as getting "unplugged". I have read the previous posts on hypoglycemia and found it really interesting to see what others have experienced. Just like others have suggested, "If our bodies can't regulate our BP's, HR's, temperatures, etc, why would we think it can regulate our sugars?" I keep thinking that following the concept of 'path of least resistence', if I can give my body what it needs, it may be able to figure out how to fix some of my many metabolic disruptions. What test confirmed your diagnosis of reactive hypoglycemia? What were your values? In addition to protein, have you found ways to limit your reactive hypoglycemia symptoms? I see my Neuro NP later today, so hope to pick her brain on the likely link between autonomic neuropathy and reactive hypoglycemia. I have found several documents that mention hypoglycemia unawareness, common in diabetic autonomic neuropathy and documented in other forms of autonomic neuropathy. I believe that by the time I realize my sugars have dropped, some other compensatory mechanisms kick in bringing up my sugars, so by the time I come out of my fog and test my sugars, my levels are back up there, and sometimes a bit elevated. I do get adrenaline surges/nightsweats but much later in my spell than others report. I have classic neuroglyopenic symptoms (low glucose to brain) and delayed andrenergic response, which seems to fit within my cardiovascular and sudomotor autonomic neuropathy (issues with andrenergic and colinergic responses)and orthostatic hypotension (issues with noradrenaline). Thanks for your reply.

Wondering if anyone has been diagnosed with Hypoglycemia Unawareness? I have recently been diagnosed with reactive hypoglycemia, do not have diabetes and don't have typical hypoglycemia symptoms. I do have cardiovascular and sudomotor autonomic neuropathy, hyperinsulinemia and insulin resistence. My episodes/crashes are prompted by eating, and first sign is sudden blurry vision with dramatic brain fog--> sleeping for hours, then awakening to nightsweats and tachy. Would love to hear of any similar experiences or thoughts. Thanks, Lyn

CHRISTYD, I am so sorry to hear about this. Eating is so important to feeling well -- it is so scary when eating makes you feel worse. Have you considered reactive hypoglycemia (RH)? RH is when blood sugar drops in non-diabetics within hours of eating. Maybe my experience sounds familiar. I have also experienced weight gain, nausea, brain fog and other cognitive issues with my autonomic neuropathy. After years of addressing/treating GI issues, food intolerances, nutritional issues, and adapting my diet numerous times, I never considered hypoglycemia. My sugars have been normal and my adrenaline symptoms happen after coming out of my episodes. Elevated insulin levels during my symptoms prompted this new glimpse into dysfunction of my glucose metabolism. I am now monitoring sugars at home to try to catch the hypos and learning how important it is to eat protein and fats with low GI carbs to smooth out my spikes, prevent my lows, and improve symptoms. Best wishes in sorting this all out. Lyn

Kiley, I am so sorry to hear about your issues trying to get into the Neurology Department at Froedtert/Medical College of Wisconin, especially with a referral. This department was instrummental in diagnosing my autonomic neuropathy and sleep disorders, and I was just there today. I am so grateful for their expertise and compassion in helping me figure out my issues. Knowing the faculty and staff like I do, I wonder if there isn't more to the backstory that is standing in your way of getting an appointment. This may have nothing to do with you as a patient or your health issues, but as others suggested -- miscommunication at play. While working in healthcare for two decades I learned many lessons, which have helped me navigate multiple healthcare systems to further my own search for answers. Professional courtesy prevents one doc from seeing another doc's patients within the same specialty, which I suspect may be part of the problem. Unless there is something in your medical records that suggest otherwise. It wasn't until I maintained copies of my records, brought and referred to them during every appointment, and pointed out every error and inconsistency that I was able to clear up several "assumptions", which I felt were damaging my plight of finding docs who could help me. Once I got the "right" signs (which are objective things medical staff can see) verses symptoms (which I reported) documentated in my medical record, things got rolling. If your record includes sufficient objective medical documentation, this should stand for itself. If your medical record doesn't include signs of POTS, record your BP/HR for several days and fax them to your GP/Cardiologist, which should lead to orthostatics performed in the office. Your documented elevated HR should open doors. I have a few thoughts that may help you get an appointment. 1) Maybe one of the Neurology nurses would take your call/call you back. Offer to fax any previous testing and explain your situation. 2) If they can't help you, ask for the name of a GI doc who works with POTS patients, then get a referral from your GP/cardiologist. 3) Try to make an appointment with the NP with your referral from your Cardiologist/GP. 4) Have your cardiologist order your autonomic testing at Froedtert. My endo ordered my testing, and my positive TTT/Valsalva/TST/QSART lead to my appointment with Barboi. 5) Get a referral to another specialist at Froedtert. Your Cardiologist could refer you to Marcie Berger, Director of the EP lab, who works closely with the Neuro department. Best wishes getting an appointment.

Sue, I have definitely picked up on our similarities, read your posts with great interest. Even ran across some of your posts on a pheo support board. I'm on my way out the door now, but would love to hear more details about your journey. Look forward to learning more about your experiences. Lyn

Just like many of you, I have taken a convoluted path to get my current ANS diagnoses, but some things just don't seem to line up. Mid 2009, my primary and I both were very suspicious of pheo, but my urine and blood catecholamines and plasma metenepherines were normal. After a trip to the ED in November with very high BP, severe headache and typical signs of sympathetic overdrive, I was thrilled to find an endo who saw me the next day and begin a comprehensive biochemical work up, leading to the ACTH Stim with Aldo and Renin. Her work-up didn't provide any show-stopping results, and after a normal pituitary MRI, she ruled out Cushings, couldn't biochemically find the pheo, and determined my HPA was intact. By then, my BP/HR issues lead to my autonomic work-up, diagnosis of AN and referral to my neurologist. Since my BP issues are ongoing, I have circled back to HP issues, then found my elevated Aldo and Renin results from 2009. I was fortunate to find a recent Mayo-trained Endo in my network who is now ruling out endocrine/neuroendocrine cause of my BP issues. Sue, for years, I've been suspicious of a hormone secreting tumor, but looks like we may have have focussed on the wrong hormones, huh? Hopefully, these 2 elevated Aldo/renin ratios will lead to an aldo supression test and CT. Fingers are crossed, and my printed research is ready for my follow up appointment in a few weeks. I have had an odd 'churning' on my right side near the kidneys for years, which even lead to a misdiagnosis of kidney infection in the past (treated with antibiotics before cultures came back normal), and haven't had an abdomenal CT in years. I could really use a solid lead right now to at least mitigate some of my daily symptoms. Thanks for the responses, Naomi and Sue. Lyn

Good evening all, I could really use some help and would appreciate any thoughts, guidance and direction. I'm wondering if anyone with autonomic neuropathy also has elevated Aldosterone? I've read through past posts on Aldosterone and researched online, but not sure if/how my autonomic neuropathy(sudomotor and cadiovascular) is in play here. I've found information/posts regarding low aldosterone and Adrenal Insufficiency or POTS, but not high Aldo and AN. I've also seen posts with really high (>1000)aldosterone, who've later been diagnosed with adrenal tumor, but uncertain if my mildly elevated values are possible tumor/adrenal hyperplasia or just my ANS playing havoc again with my body chemistry. Would love to hear if anyone has had similar experience. 12/09 Aldosterone = 40.1 @baseline & 39.8 @30 min after ACTH stim (normal=1.0-16.0). Renin = 1.6 & Aldo/renin ratio = 25.5 @baseline and 24.8 @30 min post ACTH Stim 5/11 Aldosterone = 26 (not sure why no Renin) 6/11 Aldosterone = 11.4 + Renin = 0.4 for a 28.5 ald/renin ratio. I struggle with wide swings in BP, which is definitely positional. Low normal BP(110/70)upon wakening while laying on back, high while sitting (140-150/90-100 or higher) and dropping BP upon standing, which has already been diagnosed as significant orthostatic hypotension on TTT. Last week, I figured out my BP also swings depending on which side I am laying on. Left side (low normal), same as laying on my back and right side is elevated (high) as if I were sitting. Have had negative blood and urine (catecholamines and metenephrines) workups for pheochromocytoma twice in the past, but previously never tested during episode. I am seeeing an new endo who is working me up for several possibilities. I definitely have my own suspicians, and I hope someone here may have some thoughts. My new endo is starting with 21 different tests in blood, urine and saliva, including urine catacholamines and metenephrines that were collected during episodes. I really appreciate your time and input. Thanks.

Sara, Have you had a nuclear medicine SPECT scan? Or are you seeking an imaging procedure that can help sort out your cognitive issues? I ask, because your physician will likely be confused if you request a SPECT scan. A SPECT scan, which stands for Single Photon Emission Computed Tomography, is really just the method in which images are taken in nuclear medicine. In other words, SPECT is a type of 3-D imaging. You may be familar with PET imaging which is different method of obtaining 3-D images. Nuclear Medicine procedures require a radiopharmaceutical (sometimes called a tracer) to get the images. The radiopharmaceutical is comprised of a pharmaceutcal that is targeted to a specific tissue type or organ system and then the radioisotope (radioactive) which sends microscopic rays of light that are picked up by the SPECT camera and converted to an image on a computer. Different radiopharmaceuticals are used to image the brain, heart, bones, lungs, gall bladder, or other organs as well as to localize neuroendocrine tumors, such as carcinoid or pheochromocytoma. Your physician will order the scan by either organ system, such as Bone Scan or Lung Scan or by indicating the radiorharmaceutical, such as I-131 MIBG, or Cardiolite Stress Test. MRI and CT are other methods of obtaining 3 D imaging of the body. I also have signicant cognitive issues that come and go throughout the day. Unfortunately, I am unaware of a nuclear medicine procedure that can quantify or qualify cognitive issues. Nuclear brain scans are typically used to observe the brain pre and post seizure, look for brain tumors, or identify Alzheimers and dementia. Regards, Lyn

Lou, PS I googled "IDMS creatinine" and selected the second post on my browser, which was from the NKDEP. Lyn

Lou, lets try this again. I have included both the link as well as the URL in case you have to cut and paste it into your browser. Lyn http://www.nkdep.nih.gov/labprofessionals/Clinical_Laboratorie SrCr standardization NKDEPs.htm

Even though aura's sound benign, they can be so scary! Long before my ANS issues, a neurologist diagnosed my odd seizure-like aura-type episodes as complicated migraines with and without aura. She explained that while a prodrome/aura can precede a headache in a migraine event, that in some patients, the cascade of events is aborted for some reason, so the headache doesn't actually happen. During some of these episodes, I couldn't move half my body, leading to diagnosis of hemiplegic migraine. After working through neary every migraine med on the market and being unable to tolerate depakote and verapamil, she prescribed Topamax, but I couldn't tolerate this med either, unable to titrate past the second dose level. She then recommended a book called "Heal Your Headache" by David Bucholz, a neuro at Hopkins. After following his three phase plan, which included stopping certain meds and getting off the rebounding cycle and eliminating numerous dietary and environmental triggers, especially MSG. His threory is based on lowering your migraine threshold. I was skeptical, but faithfully followed his plan. I was able to go from multiple migraines a week to zero for over five years. The funky auras also stopped for years. Last year, I was intrigued to learn that my previous neurologist did a fellowship at Mayo and was instrummental in setting up the autonomic lab at the department which later diagnosed my autonomic neuropathy. Too bad she moved out of my healthcare network way before I got my ANS diagnosis. Take care, Lyn

Hi tinks, Wow, this is certainly perplexing. I am not sure if it is coincidence but you may want to consider a non-medical possibility for your values going from 49 to 70. I may be going out on a limb here, and I am not sure how this may have specifically impacted your results, but depending on when your previous eGFRs were calcuated, this may have contributed to your differing values. In 2005 the NIKKD (part of NIH) approved a plan to standardize serum creatinine (SrCr) values across the country by initiating that each lab use the same "gold standard" method -IDMS methodology- to calulate SrCr. SrCr is one way to estimate GFR, which is differentiated from observed GFR, thus called eGFR. In 2009/10, there was a stronger push to roll out this standardized protocol. I learned of it when my previous employer's corporate laboratory converted to IDMS, but never bothered to inform other departments. I worked in diagnositic imaging administration at that time and this really threw a wrench in our assessments to determine if patient's renal function could tolerate MRI or CT contrast. For decades, MRI had used MDRD methodology and CT used Crockroft-Gault methodology to caculate eGFR (same was true across the country), and in the end my hospital system ended up converting to IDMS corrected (think fudge factor) serum creatinine as well as MDRD methodology to assess patients for possible contrast use. I worked with someone at the NKDEP to better understand all this, and at that time, they were unaware of potential issues outside of the lab or pharmacy. Same may be true here. Since different methodologies have varying limitations, some don't consider muscle mass/weight, which can vary values, depending upon which equation was used to calulate the eGFR. We did notice that patient's previous calculations varied from values calculated after the conversion (to this new MDRD calculation methodology using this new IDMS standardized SrCr values). At that time I read that IDMS SrCR values are 6% lower and that using a MDRD calculation accounting for this IDMS SrCR can yield a 10-20% shift in the eGFR calculation. I am sending a link from the NKDEP joint effort explaining this protocol shift. NKDEP link. There are details on the lab professionals pages. Hopefully, your nephrologist will be aware of this change and help determine if it explains your shifting eGFR values. Your nephrologist may also want to assess your kidneys in another way, perhaps measuring GFR directly. I realize that I didn't address your question regarding ANS impacting kidney function, but in my research EVERYTHING can be impacted directly or indirectly by a dysfunctional ANS. Wonder if anyone with a laboratory or pharmacy background can contribute to this possibility? Best Wishes, Lyn

Krissy, When I was diagnosed with Hashimoto's, I had a "normal" TSH, FT3, and FT4, but positive TPO (hypothyroidism) antibodies as well as TG (hyperthyroidism)antibodies, meaning that my previous periods of hyper symptoms alternating with hypo symptoms, were likely due to a sputtering thyroid, which can release excess thyroid hormone as it becomes more hypothyroid. Have you had your antibodies tested yet? If not, you should consider requesting the antibodies, which points to autoimmune thyroid disease. And yes, my cholesterol was high when first diagnosed with Hashi's and have now fallen into range with thyroid replacement and climbs again when my thyroid levels rise. I also get more ANS symptoms with higher TSH. I feel better with a TSH of 1.0 or lower. Best wishes, Lyn

Sarah, When I posted earlier today, I didn't consider that I may fit into this triad. 1)I have AN and OH, not POTS. 2)I have been treated for "overactive" mast cells in the past, which since have either tamed or went incognito, cause I hadn't considered mast cells as a trigger for my ANS symptoms until recently. and 3) is highlighted below. Julie, Looks like we have something else in common. Due to our similar stories, I have been drawn to your posts, which have specifically guided me in my research, and I really appreciate your insight, as well as others on this site. I would love the links you offered to share. After my mom's surgery, her vascular surgeon stressed that each of her surviving siblings as well as my brother, sister and I should be screened for aortic aneurysm, looking at both the chest and abdomen. I'd already had recent imaging which was reviewed, and my siblings were screened (US/CXR). I wonder if you have been screened/previous studies have been reviewed for aneurysms? My mom's aneurysm was identified last May, after she went to her PMD for pink eye and as he had his hand on the door, she mentioned that I was concerned about her "loud sighing". This ended up being her only symptom. (Not to scare anyone, but I later learned that sudden death is the primary/cardinal symptom of aortic aneurysm). He suspected PE, which lead to blood work, CXR and CT in the office and hours later she was admitted to a large teaching hospital 150 miles away. I did ask about liklihood of a connective tissue disorder, but at that time we were more concerned about her surviving the excruciating surgery of chilling her body and flatlining her heart to replace 28 cm length of her aorta, then dealing with the MI she'd had the first day post-op (likely caused by dropping clots during 10 hour surgery), which lead to a cath and 5 graft CABG (with bonus ASD repair)in August. Her yearly vascular follow up is next month, so I will inquire about testing her for a connective tissue disorder. Her cardiac surgeon ruled out brain aneurysm prior to her CABG in August and ran a few preliminary blood tests to rule out Marfan's and a few other connective tissue disorders (will have to look up tests/results), but I didn't make the possible connection between her issues and mine until today. I've had a really *****y 20 months, and some days I don't know where to turn or how to forge on. Then I boot up my computer and find some small piece of knowledge here or in the case of today -- a bright beacon of light to lead me to tomorrow. Thanks everyone. I appreciate your experiences, guidance, and knowledge more than words can say. Lyn

Thanks Firewatcher for your details in your response. When first diagnosed with DSPS, I did find really interesting websites on the use of colored sunglasses which promted me to wear dark glasses at night and stay away from electronics several hours before trying to get to sleep. It did help me when I was SO sensitive to light. Years before I was diagnosed I also wore tinted transitions lensed glasses (no prescription, because fluorescent lights would set off a host of wierd neuro symptoms including migraines. Sleep is so important to keeping my symptoms at bay, as well. Thanks for sharing. Lyn

Sarah, Thank you for this post. I have been wondering if my plethora of symptoms is at all related to my mom's 10 cm thoracic/abdominal aortic aneurysm, which was emergently replaced last May. Her vascular surgeon is convinced that the sudden deaths of her her father(age 49), brother(age 42) and sister (age 62) which had previously been attributed to heart attacks, are likely related to burst aneurysms. She has another sister who currently monitored with CT's for 2 brain aneurysms. 10 years ago, I had a lemon-sized cavernous hemangioma of my skull removed, which was considered an epidermoid for 7 years, before CT documented it was getting bigger. Too odd not to be considered. Your insight, along with other posts has also helped me open up my research and include my previous diagnosis of multiple chemical sensitivities/numerous allergies as possiblity of mast cell disorder. Add this to my list of goofy diagnoses and shifting symptoms, and one day, it may just all make sense! Thanks for all your efforts. Lyn

Firewatcher, thanks for your reply. I am sorry to hear that your experiences with the lightbox made your symptoms worse. I can relate to worsening symptoms with a messed up circadian rhythm, and it has taken over a year so far to sort through those issues. My autonomic neurologist emphatically recommended we focus on my sleep first, stating that without proper sleep, we won't be able to rebalance my nervous system. I should have pointed out earlier that my sleep neurologist cautioned me that patients can end up with a non-24 hour circadian rhythm as a complication to altering the delayed rhythm, which can be way worse than what I have now. Before using the box, I could advance my rhythm, but couldn't keep it there. Would you mind sharing how you used the lightbox (what type of lightbox, intensity, how long and when you used it), if you used it in conjunction with chromotherapy (advancing or delaying bedtimes to alter circadian rhythm) and if you were using any meds or supplements at that time? I would appreciate any details you share. I certainly don't want to make my symptoms worse. Thanks again, Lyn

Hello everyone, Several weeks ago in my introduction thread, I was asked to share my experience after using a blue light box I had recently purchased to help regulate my circadian rhythm. Reen and Sarah4 were initially interested, but I'm starting a new thread in case this can help someone who missed the previous posts. Last summer I had been diagnosed with sleep apnea(sucessfully treated with APAP) and Delayed Sleep Phase Syndrome (DSPS), and since light savings change, I'd been struggling with getting to bed before 4 am (even with sleep aids) and awakening before 2 pm. Before purchasing my unit, I was skeptical, but am now a believer. I have been using my blue light box faithfully for several weeks and am pleasantly surprised that I am now able to get to bed before midnight and awaken before 10 am. I use it on 50 percent intensity for 20 minutes every morning within an hour or two of awakening. The well-publicized theory is that light in the morning stimulates melatonin hormone production in the evening and can help "reset" the triggers for sleep and awake states in those with circadian rhythm disorders. This technology is also used to treat SAD/winter blues. I am still taking generic Ambien, but for over a week, have been able to fall asleep without melatonin or my sleep herbal capsule. Soon, I plan to try falling asleep without any sleep aid, which would be HUGE for me. I am interested if anyone else has tried light therapy (blue light or older units) and if it worked for them. I look forward to and thank you for your response. Lyn

If only this symptom was just some "PMS swelling", Hehehe. Over the past few years, the swelling looks more like my grandmother's CHF type edema, but can come on and release quite rapidly. Recent cardiology work-up ruled this out. I can gain and lose a full shoe size, anywhere from 15-20 pounds overnight. Even though I have been sharing this and other symptoms with every physician for years, it wasn't until reading this forum, that I have been able to sort out which symptoms are due to my various diagnoses, and which ones are yet to be explained. Thanks everyone for sharing your stories, because it is certainly helping me understand my own story better. Lyn

Just like most of my odd symptoms, I too was wondering if pitting edema was part of dysautonomia or if I have something else going on. My pitting edema comes on in waves, usually preceeding my period and lasts several days. I've had to purchase shoes a full size larger to wear when at it's worst. My PMD had prescribed spiralactone, and older dirutic, but it didn't help, as well as HCTZ, and lasix, which I coudn't tolerate. Several times the swelling was so bad, I could barely bend my knees. My neurologist recently prescribed Florinef for my OH, but have been advised to wait until my current episode of pitting edema goes down before starting. Meanwhile, while going over old labs, I noticed that I had an elevated aldosterone last year as part of my ACTH challenge, with aldosterone at baseline and 30 minutes post ACTH both hovering at 40 ng. Not sure why my previous endo didn't follow up, but I see a new endo later this week. Hoping to learn more then. Best wishes in getting to the bottom of your selling issues. Lyn

In my previous research, I only recently focussed on SFN - I had previously researched AN and OH, among other topics. This is opening up my research wide open... Just found a pretty decent description of Small Fiber Neuropathy at SFN with plenty of decent references to reputable researchers/authors. I didn't realize that SFN can cause inability to feel pain. It also states that SFN can progress as LFN, causing progressive neuropathy of both small and large fibers. Lyn

Victoria, To answer your question "Is Froedtert Hospital part of the Medical College in Wisconsin? Is it at the same place? Like St. Mary's is part of Mayo Clinic in Rochester?" Yes. The Medical College of Wisconsin encompasses the medical school faculty and clinical research entities of the Milwaukee County Regional Medical Center, but is better known as the individual entities on the same campus (Froedtert, Children's Hospital of Wisconsin, Blood Bank of Wisconin, a Psych hospital, etc)as well as VA hospital down the road. You go girl!! Lyn

newPTSmom, Has neuropathy been considered/ruled out? Peripheral neuropathy/autonomic neuropathy is associated with painful extremities, most commonly legs/feet. A QSART or muscle biopsy is used to diagnose PN/AN. Best Wishes, Lyn

Jana, Thanks for your post. Been offline for a few days, sorry for the delayed response. I am symptomatic upon standing, much worse in the morning, but I always figured it was the OH due to BP, not OI/POTS due to HR. I see a local Mayo trained endocrinologist next week, so crossing my fingers... I wore a 3 week Holter last spring, when I was first diagnosed. My HR ranged from 25 at night during sleep, which prompted a sleep study and diagnosis of 3 sleep disorders and highs of 150 with lots of tachy/sweaty notations. Seeking a endocrine triggger for BP issues. Just found blood values from last year that don't make sense. My aldosterone at baseline and 30 minutes post ACTH both hovered at 40, with a normal of 16. My plasma renin activity was 1.6, which in the aldosterone/PRA ratio was 2.5 times normal. Since aldosterone regulates BP, hoping this gets the interest of this new endo. Thanks, Lyn