SarahA33

I thought the theory of higher NE level's associated w/ brainfog was interesting for a few reasons. Mine have been really high, so I wonder if that contributes to my fog. I have to start paying attention to a correlation between adrenaline spikes and increased fogginess. "Since high levels of norepinephrine in the brain can disrupt cognitive function, it has been proposed that this mechanism could contribute to cognitive dysfunction in POTS patients with elevated norepinephrine levels (hyperadrenergic)" There are many POTS patients who have elevated norepinephrine levels, so I do wonder if in the future they will find link. "Postural changes in serum norepinephrine levels are much more pronounced in POTS patients" - Dr. Grubb POTS Eval & Management Anyway, I just started Provigil 4 days ago. I am taking 100 mg. I was able to get it covered through my insurance ,so I am very pleased. They denied it initially so my doctor had to do a prior authorization.. 30 pills are $699! No side effects to report as of yet, and I am noticing improvements!

Hi juls! Welcome Here's the link to our physicians list: http://dinet.org/index.php/physician-list Nick Tullo is in NJ, he treats general dysautonomia and syncope. His contact info is in the list above. The following doctors are from the American Autonomic Society's Website. DINET doesn't have any affiliation with these physician's, and I'd suggest calling their offices to see if they treat your specific condition, how many patients they've treated with it, etc. Best of luck on your search. Let us know if we can help further! -Sarah Pennsylvania - Wishwa Kapoor, M.D. Suite 933 MUH, 200 Lothrop Street Pittsburgh, PA 15213 USA Phone: 412-692-4821 Fax: 412-692-4825 E-mail: wnk@med.pitt.edu Orthostatic Intolerance (POTS, mitral valve prolapse) Syncope, Neurally Mediated Syncope Richard Malamut, M.D. Crozer-Chester Medical Center Ambulatory Care Pavillion Suite 533 Chester, PA 19013 USA Phone: 610-874-1184 Fax: 610-874-4258 Diabetic neuropathy Neuropathic Pain New York - Dr. Felicia B. Axelrod New York University Medical Center 530 First Avenue, suite 9Q New York, NY 10016 USA Phone: 212-263-7225 Fax: 212-263-7041 E-mail: Felicia.Axelrod@popmail.med.nyu.edu Familial dysautonomia (FD) Hereditary sensory and autonomic neuropathy Other pediatric patients with congenital autonomic disorders Ludmilla Bronfin, M.D. 650 First Avenue, 7th Floor New York, NY 10016 USA Phone: 212-532-6298 Fax: 212-545-8530 e-mail: lumsig@aol.com Postural Tachycardia Syndrome (POTS) Autonomic Neuropathy Orthostatic Intolerance Hyperhidrosis Horacio Kaufmann, M.D. Dpt. of Neurology,NYU School of Medicine 530 First Avenue, Suite 9Q New York, New York 10016, USA horacio.kaufmann@med.nyu.edu Multiple System Atrophy (Shy-Drager Syndrome) Autonomic Failure (PAF, secondary autonomic failures) Orthostatic Intolerance (POTS, mitral valve prolapse) Other autonomic disorders Lindsey Lee Lair, M.D. 35 East 35 St, Suite 202 New York, NY 10016 USA Phone: 212-683-4640 Fax: 212-671-1466 E-mail: contact@autonomicmd.com Multiple System Atrophy Pure Autonomic Failure Orthostatic Intolerance, POTS Neurally Mediated Syncope Hyperhidrosis Frank Mazzola, M.D., F.A.C.C. Clinical Assistant Professor State University of New York at Stony Brook North Suffolk Cardiology Associates 2500-1 Nesconset Highway Stony Brook, NY 11790 USA Phone: 516-689-7700 Fax: 516-689-7720 E-mail: fmazz@compuserve.com Multiple System Atrophy (Shy-Drager Syndrome) Autonomic Failure, (PAF, secondary autonomic failures) Orthostatic Intolerance (POTS, mitral valve prolapse) Neurocardiogenic Syncope Developmental Dysautonomia Chronic Fatigue Syndrome Emilio Oribe, M.D., F.A.C.P. 162 East 78th Street New York, NY 10075 USA Phone: 212-794-2281 Fax: 212-517-5991 E-mail: exoribe@nyp.org Website: www.nynapc.com Syncope/Fainting Orthostatic Intolerance/POTS Multiple System Atrophy Parkinson’s Disease Autonomic Failure Mark S. Pecker, M.D. Hypertension Division New York Presbyterian Hospital-Cornell Campus 525 East 68th Street New York, NY 10021 USA Phone: 212-746-2210/2124 Fax: 212-746-8451 E-mail: mpecker@mail.med.cornell.edu Multiple System Atrophy (Shy-Drager Syndrome) Autonomic Faliure (PAF, secondary autonomic failures) Orthostatic Intolerance (POTS, mitral valve prolapse) Other autonomic disorders (Circulatory) Rohan G. Perera, M.D. Division of Cardiology St. Luke's -Roosevelt Hospital 1111 Amsterdam Avenue New York, NY 10025 USA Phone: 212-523-4007 Fax: 212-523-3915 E-mail: pererarohan@hotmail.com Multiple System Atrophy (Shy-Drager Syndrome) Autonomic Failure (PAF, secondary autonomic failures) Orthostatic Intolerance (POTS, mitral valve prolapse) Other autonomic disorders Indu Taneja, MBBS, Ph.D. 19 Bradhurst, Suite 3050 North Hawthorne, NY 10532 USA Phone: 914-593-8885 Fax: 914-593-8890 E-mail: indu_taneja@hotmail.com Orthostatic Intolerance Neurally Mediated Syncope Louis H. Weimer, M.D. Neurological Institute of New York 710 W. 168th Street New York, NY 10032 USA Phone: 212-305-1330 Fax: 212-305-5396 E-mail: lhw1@columbia.edu Multiple System Atrophy Pure Autonomic Failure Orthostatic Intolerance Autonomic Neuropathy Other Autonomic Disorders

Hello, Draven. Welcome to the forum. I see that Katie has given you the link to dysautonomia specialists, hopefully someone is in your area. Reading through your list of symptoms, it sounds like you would really benefit from a facility that has access to dysautonomia testing. I had a really complicated case, and my local doctor's had tried everything they could and eventually sent me to the Cleveland Clinic and I had a full autonomic workup. The following test's are from the cc's website: "The Cardiovascular Autonomic Test with Tilt assesses how well a patient’s autonomic nervous system controls blood pressure and heart rate during different maneuvers: deep breathing, the Valsalva maneuver and head-up tilt. These tests are particularly helpful in assessing patients with fainting or syncope. The Quantitative Sudomotor Axon Reflex Test (QSART) measures the autonomic nerves that control sweating. This test utilizes a method to stimulate sweat glands and measure the volume of sweat that is produced. The QSART is useful in assessing many autonomic disorders, especially autonomic and small fiber neuropathies as well as some types of pain disorders. The QSART also is helpful in localizing the site of the autonomic disorder to the peripheral or central autonomic nervous system. The Quantitative Sensory Test (QST) measures a patient’s ability to feel vibration and temperature sensation. This test is useful in the assessment of patients with polyneuropathy, especially small fiber neuropathy. The Thermoregulatory Sweat Test (TST) is a measure of a patient’s ability to sweat when stimulated by a warm and humid environment. This test assesses both the central and peripheral autonomic nervous system’s control of sweating and body temperature regulation (thermoregulation). The pattern of sweating abnormality detected by this test can be helpful in diagnosing a variety of neurological and autonomic disorders that may cause reduced sweating (anhidrosis) or excessive sweating (hyperhidrosis). These disorders include small fiber and autonomic neuropathies, radiculopathies, and central autonomic disorders including multiple system atrophy, Parkinson’s disease with autonomic dysfunction, and pure autonomic failure." I have night sweats also, it's better now, but I had a really hard time for years. I would wake up with tremors, drenched in sweat, heart racing, headache (if I didn't have a migraine already). Medications have improved it -- propranolol, clonidine, Ativan, Ivabradine. I have POTS with a hyperadrenergic state and Inappropriate Sinus Tachycardia, Raynaud's phenomenon, chronic migraine, and generalized epilepsy. I'm just wondering if any of your doctors have mentioned Small fiber neuropathy to you? "Small fiber neuropathy is a condition characterized by severe pain attacks that typically begin in the feet or hands. As a person ages, the pain attacks can affect other regions. Some people initially experience a more generalized, whole-body pain. The attacks usually consist of pain described as stabbing or burning, or abnormal skin sensations such as tingling or itchiness. In some individuals, the pain is more severe during times of rest or at night. The signs and symptoms of small fiber neuropathy usually begin in adolescence to mid-adulthood. Individuals with small fiber neuropathy cannot feel pain that is concentrated in a very small area, such as the prick of a pin. However, they have an increased sensitivity to pain in general (hyperalgesia) and experience pain from stimulation that typically does not cause pain (hypoesthesia). People affected with this condition may also have a reduced ability to differentiate between hot and cold. However, in some individuals, the pain attacks are provoked by cold or warm triggers. Some affected individuals have urinary or bowel problems, episodes of rapid heartbeat (palpitations), dry eyes or mouth, or abnormal sweating. They can also experience a sharp drop in blood pressure upon standing (orthostatic hypotension), which can cause dizziness, blurred vision, or fainting." https://ghr.nlm.nih.gov/condition/small-fiber-neuropathy

Hi, Emma-- Do you have migraines? I was told I have something called Prinzmetal's Angina. (squeezing in my chest, difficulty breathing, tachycardia, and even in some occasions eye pain, I've had capillaries in both eyes break and it was attributed to a spasm) The chest pain is better now that I'm on Ivabradine and Clonidine. I'm not sure why the combination has helped, maybe the clonidine has helped control the norepinephrine spikes - adrenaline, which is a vasoconstrictor. But, I have migraine's and Rayaud's, too, which actually led to the Prinzmetal's Angina diagnosis. I've had an a really thorough cardiac workup recently at the Cleveland Clinic, so I know it's basically a combo of my POTS and possibly this angina that's causing the chest pain for me. I know many people find relief for chest pain with Calcium Channel Blockers, but there's an interaction with Ivabradine, and I see your taking that. Also, Nitro, or even Aspirin, has been helpful for many. Have you considered talking to your dr. about those? I mostly get my Chest pain when I'm relaxing and laying flat. It rarely happens when I'm out and about, running errands, etc. I'm sorry that you are feeling a bit sad about this, I know it can be frustrating and scary. I know what you are going through, I wish you relief for your symptoms and some answers.. Sarah

Oh dear toomanyproblems -- so sorry that you are having a rough go of it right now. Are your electrolytes normally abnormal or did they become this way due to the prep? I'd think the prep could cause certain imbalances. Like Ancy was also concerned about, I just hope you'll be able to keep hydrated at home. Please take good care of yourself. Wishing you well.. Sarah

Hello, Hello Darling Welcome to the forum! I have POTS and IST, also. I've been diagnosed with POTS w/ hyper component for a while but was just recently (w/in past year 1 1/2 diagnosed w/ IST). I've gotten so much better since I've been correctly diagnosed. I'm glad you have a diagnosis because hopefully now you will be able to make progress, too. Especially when you get the appointment with the pots specialist. In the meantime, it does sound like the EP has given some good info to start w/! I'm now incorporating about 5-7g of sodium daily, depends on how I feel and what I have going on that day. Some pots patients use sodium tablets, but I couldn't tolerate them because it made my nausea worse. These are the highest content from my journal: 8 oz V8 juice = 420mg (I usually split it in 1/2) 1 cup chicken broth = 860 mg Sabra Hummus Singles = 260mg (I eat w/ Pretzel's that have 611mg 1cup ) 10 black olives = 320 mg 1 cup tortilla chips = 539 mg (w/ 1/2 cup spinach and artichoke dip =377mg) cottage cheese w/ fruit = 1/2 cup 368mg 1 Bagel = 390mg (Cream Cheese = 1 tablesppn 150mg) some cereals have a really high sodium content: grape nuts has 580g sandwiches: lunch meat,a few slices of turkey 360mg, 1 slice of American Cheese = 368mg, and 2 slices of white bread are 280mg combined 1 cup Spaghetti Sauce = 1,000mg Veggie Burgers = 500mg Frozen veggies = 1 small package 500mg Uncle Ben's Microwavable Brown Rice Pouch = 710mg I think a lot of POTS specialists recommend 2-3 liters of fluids, but everyone is so different so check w/ your doctor. In my case, I was told to split 50% water and 50% electrolyte drinks, etc. I know a lot of members actually make their own, which I'm actually considering because gatoraid seems to be causing heartburn lately. . Poweraid does not, however, so I don't know if it's the dye/coloring they use. I'm really into coconut water recently which comes in plain, orange and pineapple. If anyone has any other suggestions please share because I'll need to supplement the gatoraid w/ something! I've found the knee-high compression really helpful with dizziness, blurred vision, and brainfog symptoms. Regarding exercises, the recumbent bike has been most helpful for me. Since I was put on the medication, Ivabradine, I was able to build up to 30-40 min 3-4x per wk and even add in some cardio. I unfortunately have a bad knee at the moment, but I do walk on the treadmill for about 10 minutes (which typically isn't recommended for pots patients because it's an upright exercise). I also lay flat and use ankle weights to do front/side leg lifts, as well as bicep curls, and reverse crunches. I too deal with temperature regulation issues. It's all part of the autonomic dysfunction.. Best of luck to you and I'm glad you have joined us here! Sarah

Oh, I almost forgot, here is an article related to the effects of POTS/Menstrual Cycle: http://europepmc.org/articles/pmc3413773

Hi Amalia! There have been quite a few discussions on this in the past actually. I personally don't notice a difference in BP changes before my period, but I get really sick during my period. (maybe blood loss?) Please check out this past thread if you are considering BC: http://forums.dinet.org/index.php?/topic/26812-symptoms-during-period/

Hi Robin, When all of my symptoms began, 8 years ago my dopamine was not detectable also. Twice. Then, it once was 29, and now it's normal. So, I don't know! I've always wondered about that though. What did your doctor say? Mine were more concerned with my elevated norepinephrine which is also measured in that test. It's a catecholamine test. If you would like some info on this, just let me know. I think there may be low dopamine symptoms (weakness, confusion, intense shaking), but I wasn't displaying any of them. Take care, Sarah

Hi, Samip, Here is a link to DINET's support group page on our main site: http://www.dinet.org/index.php/information-resources/support-groups Unfortunately there aren't any in your area atm. We did just add one a few weeks ago, so please check back from time to time. Thank you! Sarah

Hi All, here is an article from Dysautonomia International's blog. It was written by Dr. Amy Arnold from Vanderbilt University. (I'm not able to paste the link for some reason) Cognitive Dysfunction and “Brain Fog” in POTS Cognitive Dysfunction In POTS by Amy Arnold, PhD POTS is one of the most frequent forms of chronic orthostatic intolerance, and is a common source of disability among young adults. One of the most common symptoms reported by POTS patients is cognitive dysfunction or “brain fog.” These terms both indicate a loss of brain functioning in areas such as thinking, remembering, concentrating, and reasoning to a level that interferes with daily activities. In our center (Vanderbilt University’s Autonomic Dysfunction Clinic), approximately 80 to 90% of POTS patients report cognitive dysfunction and often describe it as: “difficulty thinking, concentrating, or paying attention; trouble remembering things; cloudy or fuzzy feeling in head; and having problems finding the right words.” This can occureven while patients are lying down or seated, which limits their ability to attend school or to work. While cognitive dysfunction is an almost universal finding in POTS patients, it is still poorly understood. In response to our patient’s concerns, we designed a study to identify specific problem areas for cognitive function in POTS. We gave a series of standardized neuropsychological tests to POTS patients and compared their responses to healthy subjects matched for age and gender. We studied patients in the seated position, to minimize heart rate changes and related symptoms. We found clinically meaningful impairment in three areas of cognitive function in POTS patients. First, patients had impaired selective attention, or the ability to focus on specific stimuli when several stimuli are presented at the same time. For example, patients were slower and made more mistakes when asked to mark only the numbers 2 and 7 within a long series of numbers. Second, patients had impaired cognitive processing speed, indicating that it took longer to process information. Finally, patients had impaired executive function, indicating problems with planning, organizing information, and adapting to changes. There were no deficits in other areas of brain function including intelligence, memory, reaction time (psychomotor speed), and information retrieval from memory (verbal fluency). Importantly, in our study, there was no association between cognitive dysfunction and psychiatric symptoms such as mild depression or anxiety in POTS patients. In summary, our study showed that POTS patients have deficits in specific areas of cognitive function including selective attention, processing speed, and executive function. These problems were observed even in the seated position. This may indicate that the cognitive dysfunction in POTS is not due to the increased heart rate and symptoms with standing, but rather may reflect part of the disease itself. Further studies are needed to determine the impact of standing, the underlying causes, and the optimal treatment strategies to manage this cognitive dysfunction. Is cognitive dysfunction the same as brain fog? There are several words that have been used to describe the cognitive dysfunction in POTS including brain fog, mental fog, mental fatigue, and mental clouding. These all refer to multiple symptoms that impair intellectual functioning to a level that interferes with daily activities. These symptoms can include difficulty thinking clearly, trouble concentrating or focusing, and mental confusion or lack of mental clarity. What are the specific tests for cognitive function? There is not a single test or series of tests used to diagnose cognitive dysfunction. Rather, there are numerous standardized neuropsychological tests that can provide information about different aspects of cognitive function. The basic purpose of these tests is to determine the likelihood of meaningful cognitive impairment, by comparing scores to normative values obtained from healthy subjects of similar age, gender, and education level. A potential limitation is that the tests may not have been validated in every population (such as POTS), and may have lower accuracy to detect changes in patients with mild levels of cognitive dysfunction. Who can diagnose cognitive dysfunction? A primary care physician can perform a general screening test for cognitive function, but this may not detect the more subtle changes that we found in POTS. In general, a neuropsychological evaluation is needed to gain a comprehensive understanding of how one’s brain is functioning. This involves a visit with a clinical neuropsychologist who will perform an interview and give a series of validated tests and questionnaires that look at a variety of brain functions such as intelligence, memory, attention, executive function, language, mood, and personality traits. The information from these tests may help in assessing brain function over time or after treatment. What type(s) of cognitive dysfunction are common in POTS? Our study showed problems with selective attention, cognitive processing speed, and executive function in POTS patients. Other studies have also shown problems with working memory, or the ability to hold onto and to process new and already-stored information, in POTS patients that also have chronic fatigue syndrome. This impairment in working memory may reflect the additional presence of chronic fatigue syndrome, as problems with memory and concentration have been well described in this patient population. It is important to note that there was a large variability in cognitive test scores in our study, with some POTS patients having scores within the normal range for healthy subjects. Thus, the diagnosis of cognitive dysfunction, and related treatment plans, should be considered on an individual basis. What is the (suspected) cause of cognitive dysfunction in POTS? The cause of cognitive dysfunction in POTS is still unknown. There have been several potential causes proposed. First, there is an association between elevated norepinephrine levels and psychiatric disorders such as depression, panic disorder, and attention deficit hyperactivity disorder. Since high levels of norepinephrine in the brain can disrupt cognitive function, it has been proposed that this mechanism could contribute to cognitive dysfunction in POTS patients with elevated norepinephrine levels (hyperadrenergic). We did not find an association between plasma norepinephrine levels and cognitive function in our study in POTS patients, but further studies are needed. Second, studies have shown that a reduction in brain blood flow may contribute to impaired memory in POTS patients with chronic fatigue syndrome. Finally, POTS patients often have other conditions including small fiber peripheral neuropathy, vasovagal syncope, immune system activation, pain, irritable bowel syndrome, and sleep disorders. These could all negatively impact cognitive function and overall mental health. Is cognitive dysfunction similar to attention deficit hyperactivity disorder (ADHD)? Is using ADHD medication to combat cognitive dysfunction recommended in POTS? In a previous study, we compared the psychiatric profile of POTS patients to adult patients with ADHD (Vidya Raj and colleagues, Journal of Neurology, Neurosurgery & Psychiatry, 2009). We showed that people with both disorders have difficulty maintaining attention, but that it is more severe in ADHD. Furthermore, POTS patients developed problems with attention later in life and did not show significant hyperactivity, which is opposite to the childhood presence and the common feature of hyperactivity with ADHD. Therefore, the pattern of cognitive dysfunction appears to be different in POTS versus ADHD. The most common treatment for ADHD is the use of stimulants (such as Adderall and Ritalin) to enhance alertness, attention, and memory. There is no information on the effectiveness of ADHD medications in POTS. To address this, we are currently conducting a study examining the effects of the stimulant drug modafinil on cognitive function in POTS patients at the Vanderbilt Autonomic Dysfunction Center. Since there is concern that stimulants could worsen heart rate control in POTS, we are also examining the effect of modafinil in combination with the beta-blocker propranolol. This is the first study addressing treatment strategies to manage cognitive dysfunction in POTS. Amy Arnold, PhD, is a Research Instructor in the Division of Clinical Pharmacology at the Vanderbilt University School of Medicine. She is also a member of the Vanderbilt Autonomic Dysfunction Center. Her clinical research program focuses on understanding the causes of autonomic nervous system disorders such as POTS and autonomic failure, as well as new treatment strategies for these conditions.

https://www.youtube.com/watch?v=i_mmnauho7g&feature=youtu.be

Hi Andreak, I'm sorry to read your daughter is going through this right now. how scary. I don't have anything to personally offer other than one of our Medical Advisor's, Dr. Blitshteyn, has written a few articles on POTS and Pregnancy, and I think has done a research a study in this area also. She offers Skype Consults, so I'm not sure if that may be helpful to you all. Wish I could be of more help. best of luck to you guys! Sarah http://www.drblitshteyn.com/ http://www.dinet.org/index.php/about-us/advise

Hi Sarah, Sorry that you are going through a rough patch right now. Try to remember that this too shall pass. I'm sure it's hard for your parents, and I know in my case, I don't find my support from my parents. (for different reasons though). It's probably a lot for them to see you feeling poorly and maybe they aren't exactly sure what you best need in terms of support. Seeking and Receiving support with a chronic (and invisible) illness can be a struggle at best, especially in the beginning. I'm sure your boyfriend and parents have the best of intentions. They love you, want to help you and ease as much pain as possible for you. I know in my situation, early in the diagnosis, often those with the best of intentions often ended up getting misconstrued and hurting the most sometimes. Things that were said as compliments would somehow leaving me feeling invalidated and crushed. I'd end up asking myself, "how did we get here again?" I've learned to now cut some slack to those that I love who I know mean well, because it's hard for everybody. It's a real learning curve, and everyone learns quickly without a handbook. My best support comes from my closest friends, my fiancé, and my NP who actually plays the role of a amateur therapist. I don't doubt that you'll find what works for you in terms of support. In the meantime, we're all here for you! Since the forum is public, sharing location is optional for you, but I wasn't sure if you were close to any of these support groups listed here, just a suggestion! http://www.dinet.org/index.php/information-resources/support-groups

Yeah, Yogini! Fantastic news

Jas, Has your cardiologist had your catecholamine levels checked? (norepinephrine and epinephrine, as well as dopamine) those are our stress hormones, mainly produced In the adrenal glands, basically responsible for the flight or fight response that we have. This is a good article that explains the basics of them: http://www.webmd.com/hypertension-high-blood-pressure/catecholamines-in-blood You're very lucky Dr. Raj is close to you. He's also one of DINET's medical advisors. This is a great article by Dr. Raj that talks about lab abnormalities and the various subtypes. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756553/

Hi, JaS, Welcome to the forum, I also have Orthostatic Hypertension and POTS w/ the hyperadernergic form. There could be a few reasons why your BP spikes when upright, but Kjay's explanation is the one that my POTS specialist gave to me at the CC. Basically, it's sympathetic discharge and over production of adrenaline. Do you have any symptoms when this happens to you? I sometimes get shaky, forgetful at times, flushed, sweaty,etc. Your cardiologist may be onto something with the hypovolemia and Florinef, I really suggest talking to he/she about your concerns. . My understanding is that it initially can increase pressures but then as your blood volume starts to expand, it almost works like a salt and water balance, so your pressure balances out. Don't quote me, it has something to do with aldosterone escape. http://www.dinet.org/index.php/physician-list Here is our physician's List, maybe there is someone in your area that u can find that specializes in dysautonomia and can perform the testing. Best of luck to you, Sarah

Yay, Katie glad your feeling slightly better. You and I are 97. 1 girls! My NP thinks 99. is high for me, bless her heart. But she's one of the few who get it. Feel better soon Ancy, I can't believe that doctor told you that you spiked your own fever. Goodness gracious. Did you ever see the movie Matilda? I bet you wished you could've used all that telekinetic energy to transfer the super glue to his hair dye! Anyone remember that scene?

Hi there, welcome to the forum! I'm not sure how far Denver is from Aurora, Colorado. However, there is a specialist on our physician's list, Dr. Jill Schofield who treats POTS, NCS, NOH. Here is the link to her information: http://www.dinet.org/index.php/index.php?option=com_physicianlist&view=physiciandetail&Itemid=0000&phyid=450 Best of luck to you! Sarah

Hi Josh, You may want to check out some of this past thread. If you read through it, it talks about various neuropathies. http://forums.dinet.org/index.php?/topic/23213-cold-area-on-leg-like-water-spilled-on-it/?hl=%2Bcold+%2Bwet+%2Brunning

Josh, Can you ask your cardiologist for a portable EKG/holter monitor? I had mine for 30 days at the longest, but also for 48 hour periods. When I was having cardiac related events, I would press a button and it would record and send the data to my physician. Sorry you haven't been able to get to the bottom of this yet. Hang in there!

Hi, dm -- Have you had an EEG? Also, these links include information on Neurocardiogenic Syncope - NCS, a form of dysautonomia. During the fainting episodes, some patients have seizure like activity. http://dinet.org/index.php/information-resources/ncs/ncs-general-information http://dinet.org/index.php/information-resources/ncs/ncs-links

low grade fever, Not sure if all these are related but they could offer some theories or ideas http://forums.dinet.org/index.php?/topic/27101-do-we-get-a-fever-when-sick/?hl=%2Blow+%2Bgrade+%2Bfever#entry251978 http://forums.dinet.org/index.php?/topic/25304-body-temp-weirdness-anyone/?hl=%2Blow+%2Bgrade+%2Bfever#entry235944 http://forums.dinet.org/index.php?/topic/23545-anyone-with-pots-feel-feverish-a-lot/?hl=%2Blow+%2Bgrade+%2Bfever#entry219938 Propranolol: http://forums.dinet.org/index.php?/topic/27095-hyperadrenergic-pots/ http://forums.dinet.org/index.php?/topic/24990-bp-meds-designed-to-lower-bp-make-mine-go-up/?hl=%2Bpropranolol+%2Bopposite

Hi, Sarah, Were your BPs raising before you started the Florinef? Just wondering because Florinef basically helps the kidneys hold onto fluids/water and sodium, which in return increases our blood volume and blood pressure. So it's really great that you bought the BP monitor to check your vitals! Anyway, I have read a few posts about propranolol increasing BP's initially if I remember right. Are you on the short acting or the LA form of it? Also, regarding the low grade fevers, I run temps around 99 also when I get a fever. I typically have a temp of 97-ish. A lot of us w/ POTS or autonomic dysfunction have trouble with temperature regulation. There have been recent posts on this, i'll try to find them for you real quick. I found this article for you on the side effects of propranolol, it mentions GI symptoms. http://www.mayoclinic.org/drugs-supplements/propranolol-oral-route/side-effects/DRG-20071164

Hi Robin, Welcome to the forum! Katie made a really good suggestion about having the cardiologist who diagnosed you send the results to your primary. I think this could be really useful for you, so that he sees a diagnosis on paper. Also, I know you mentioned that you have an upcoming appt with a specialist in February (good luck btw!), in my experience, most GP's will refer out for these specific cases and take the recommendations of the specialists. So, my advice would be to schedule a follow up appointment with your GP after the specialist and make sure all the testing/office notes are forwarded. Wishing you the best, Sarah