kitt

Flatout, Am sorry you're going through this. I'm confused but trying to understand. You say: Pasting.... "But the clincher for mayo it seems was the dubious Holter monitor." So did Mayo have your records in hand when they denied you for a dysautonomia eval? I've never known Mayo to ask for records prior to a visit. Only a referral. Can you share how all that came about? The holter monitor data. How did they happen to have it? I'm very sorry you're having this experience. I've been to Mayo in many times and have never heard of anything like this. I'm confused, but trying to understand this dilemma. Thanks for sharing, K

NM Potsie, NOBODY explains things better than you. I always 'get' what you say. You can speak up and I never feel like you speak down. Thanks for that, and this explanation is great. Makes me smile, cause I always understand what you're saying, and more importantly you've usually helped me better understand what I'm thinking. Smiles! K

NM Potsie, Good to know! I see the doc who prescribed it to me Thursday, so this is timely for me. Thank you and Janet both for the timing. My recollection though is that neurotin even at low dose, (400 mg?) seemed to have a 'dumbing' effect on me. It's been a while since I took it, but that was my initial memory. I admit I did not give it a good chance. It just seemed to have a very strong impact though, and I immediately thought..."No, I don't want to take this." But it was prescribed for a type of pain that I don't associate with hyper pots. CFS pain or neuro pain. The side effects you had are disturbing. Janet, did you experience anything like that? I'm really for as few drugs as possible, but when it comes to reducing sympathetic activity and sleep...I'll try! Best, K "

How does Dr. Grubb suggest otherwise?

Janet, Thanks much for sharing. From what I've been told Mayo has told many people that they have a 'hyperadrenergic response' and are in a 'hyperadrenergic state' These are pots patients who've been to Mayo pots patients presenting with extreme hyperadrenergic pots... (NE over 1000) so am still confused about that. Mayo has recently published a paper that is very clear about pots DX and classifies pots patients in two subgroups. Those with an NE level of 600-999 and those with an NE of 1000 to 2000. They've not acknowledged hyper pots patients with NE levels over 2000. (Am not suggesting people who have been treated at Mayo don't present with an NE higher than 2000, but Mayo has not acknowledged that subset in their peer reviewed publications...(Please correct me with a link if I'm mistaken.) Janet, back to you. Good to know neurontin helped you with sleep. I have more neurontin scripts than I can even count. It was prescribed to me many times for pain to due another issue, and I filled the scripts but I only took it a few times. Am sensitive to meds, so try to keep meds at a mimimum... BUT if it helps with sleep, I'll definitely talk with the doctor who prescribes it! Thanks for mentioning it. 2400mg a day sounds like a lot to me. Do you have side effects? Clonodine caused extreme episodes of tachycardia for me when I was sitting and supine. (Odd, I know.) So I switched to Methyldopa, which is VERY helpful with sleep, but it does allow me to sleep but not until the wee hours of the night. A huge improvement though. Prior to Methyldopa, I was only sleeping for an hour or two at at a time during the night. I'm interested in hearing about your neurotin dosage and your sleep issues. Am surprised 10mg of Elavil was discouraged? It's such a low dose. I also was prescribed that, but like most scripts, I also discontinued it (with my doctors knowledge), but if it helps with sleep...I'm IN. Thanks again for sharing Janet. Best, K

Hyperpots, thanks for chiming in. You have hyper pots, and also HIGH BP, yet you're taking salt tabs for the tachycardia? You didn't mention high blood pressure with regard to salt loading. You're hyper and salt loaded. Do you continue to? Did any doctors express a concern with high salt intake due to high BP, renin and aldosterone levels?

Alex, you make a good point about salt increasing BP, but I don't find any information that it's caused by adrenalin? Your post though made me realize though why salt loading (perhaps THE primary reason?) is NOT recommended for hyperadrenergic pots patients. MOST hyper pots patients have high BP, although not all. Their are few of us on Dinet with moderate and extreme hyper pots who have low BP. I'm one with hyper pots and low BP, so I know why my doctor was quick to prescribe the picc line and saline infusions. Here's a link that explains that doctors really don't know 'why' salt increases blood pressure. http://www.ncbi.nlm.nih.gov/pubmed/16467498 So not sure what you mean by adrenaline causing high BP? Would be interested in reading anything you might find though.

Diabeticgonewild, No need to apologize to, (certainly not to me!) Just wanted to point out that the person who writes that blog does a great job and does a service to pots patients. Wish more people were able or willing to write a comprehensive blog and provide good information. Diabetic, you provided a great piece of information on hypovolemia! You wrote: Pasting... that a "Daxor blood volume test" could be useful in determining low retention of fluids in hypovolemic POTS. Only certain hospitals have this machine. Good information Dietbeticgonewild! Thank you for posted that. Prompted me to look for what hospitals have this machine, and found the link to exactly which hospitals have the machine. Here's the list by state and city... http://www.daxor.com/clientlist.asp

Diabeticgone wild, You mentioned a suggestion and used the phrase 'on a blog nonetheless' This girl does an excellent job on her blog. I don't read it regularly, but she does an excellent job of blogging about pots. I have a script to have a picc line put in to start saline IV's but haven't done it yet. Hope to get some improvement. Have read of MANY pots patients getting saline, and they report a very significant improvement. What confuses me though is that salt loading is not recommended for hyperpots patients. Am confused by this. Does anyone know why?

Janet, Thanks for sharing your catecholamine levels. What meds do you take for hyper pots? Are you able to sleep with an NE level that high? Think the dopamine level being so high is something that is considered an 'incidental finding'....Unlike a very low dopamine level. Mine is very high too, and no doctor has given it much significance. Have the script and 'stuff' to do a 24 hour urine catecholamine test with an endocrinologist, but haven't gotten around to doing it yet. Will take the dopamine level up with her. Am more concerned about serotonin levels. When dopamine is high serotonin is low and vice versa, but don't think it's something a doctor will necessarily 'treat'. From my paste above it states "Remarkably, baseline plasma DBH activity in healthy indi- viduals varies more than 100-fold. Individual variation in DBH activity is primarily genetically determined." A 100-fold variation in dopamine is huge, so I'm guessing that may be why it's not looked at too seriously. Although from the posts here it seems to be common with both pots patients and hyper pots patients. Janet, can you provide a link to (pasting from your post): Dinet Mechanisms of Pots page a paragraph about a hyperdopaminergic state and some references. Best, K

Carrie, When did you last see Dr. Grubb? It's odd about the NE reference ranges being the same standing and supine. Doesn't make sense in terms of dysautonomia. As to your initial post, I still think you're safe to conclude you're not in a hyperadrenergic state. You may want to have catecholamine testing redone at some point, but all experts including Mayo, Vandy and Grubb have determined that 600 is the bottom line for hyperadrenergic pots. Many with an NE in the 600's have been dx. as 'borderline' hyper pots by Mayo. Interesting. Any research you find regarding a high dopamine level would be interesting. The only articles I found regarding HIGH dopamine and pots suggest a low serotonin level as I mentioned. I've researched extensively and other than articles referencing low dopamine levels, I didn't find anything significant. Please share what you find regarding HIGH dopamine. Carrie, how high is your dopamine? Can you share the number and the reference range? Mine was more than double the norm on quest labs. Am wondering if only a psychiatrist who specializes in pharmacology would know how to approach balancing these two neurotransmitters, (dopamine and serotonin). Can't imagine what other kind of doctor could sort this out? Best, K

High DBH... vity (51). Remarkably, baseline plasma DBH activity in healthy indi- viduals varies more than 100-fold. Individual variation in DBH activity is primarily genetically determined. Among the poly- morphisms found in the DBH gene that affect either enzyme levels or function (3, 4), the 1021C3 T polymorphism in the promoter region accounts for up to 52% of variation in plasma DBH activity (5). Because of individual variability in DBH, associations be- tween DBH activity and various diseases have been elusive (25). Elusive...Indeed. Most of the literature about dopamine and illness concerns LOW dopamine, not high. The best articles I've found correlate high dopamine with low serotonin. Dr Grubb is now saying that an NE of 520 is indicative of a hyperadrenergic state? This is contrary to everything I've read thus far. Vandy, Mayo and Dr. Grubb all seem to agree that 600 is the 'bottom line'. I've not seen anything in any literature referring to Dr. Grubb and hyper pots and an NE of 520. Carrie, do you have a link to this? Mayo has recently divided hyperadrenergic pots patient into two subsets. Those with an NE of 600 to 999, and those with an NE of 1000-2000. I'd be interesting though in reading anything you can share that suggests Dr. Grubb has a different opinion. Thanks for sharing Carrie.

Carrie, I also have very high dopamine. More than double the norm. You'll find a lot of information regarding serotonin and dopamine. When one is high the other is low in equal proportion. I have a good article 'somewhere' that explains it. Both should be like a 'half a glass of milk' when either dopamine or serotonin is high the other is in equal proportion low. My norepinephrine is very high though, over 1400. Think you can feel comfortable that you're not in a hyperadrenergic state. Best, K

Rama, can you explain why you differentiate between sympathetic activity and dizziness/weakness, meaning why are the two symptoms indicative of a different causation? Are you saying people with dizziness and weakness do not have excessive symptoms of sympathetic activity? It's interesting as I obviously have excessive sympathetic activity and generally don't have dizziness or weakness. Why is dizziness and weakness NOT a sign of excessive sympathetic activity?

Carrie, can you share what kind of problems you've had with temperature regulation? Have you managed to resolve this? Any tips on how you did that? Inability to regulate my body temperature is my second worst symptom with hyper pots, (First being the inability to sleep). I go from hot to cold to hot, and am sometimes hot and cold at the same time, (fire and ice sensations). I also have extreme 'sweats' particularly during the night. Like you I'm hyper but have low blood pressure. Are you basing your hyperadrenergic status on catecholamine testing or something else? Thanks again for sharing, K

Good information Issie! I had not seen information regarding NE levels and BP data and mast cells.

Very, very fortunate that you had a nurse practitioner who was determined and went the extra mile to help find your dx. I find most doctors don't take the time to Google on the internet looking for answers. My experience with endocrinologists, (I have Hashimoto's Disease) is that they order tons of lab work, and use that data as their basis for all diagnostic and treatment plans. Many patients with CFS have an HPA axis disorder. HPA = Hypothalalamic-Pituitary-Adrenal It's almost impossible to find a endo who's willing and able to think outside the box, and figure out how to test for this. You're lucky indeed to have encountered the nurse practitioner that you did. Thank you again for sharing your story. K

On the topic of food, am passionate about this topic. About 8 years ago I gave up all sugar and sugar substitutes, and it's been the most significant thing (in my control) I've ever done for my health. Here's a video that 60 minutes aired that claims sugar is toxic. Well worth watching. http://www.cbsnews.com/video/watch/?id=7417238n

Outstanding! Thank you for sharing this. While watching I kept thinking 'Cognitive dysfunction didn't affect her!' Bravissimo. K

Diabeticgonewild, You've done a great job on this topic. Not only do you have AAG, but you've cleared up several misconceptions. Notably, that the primary symptoms listed are not always present. You listed your symptoms which in some cases are opposite of those listed, and made a technical topic 'real' The links you provided are excellent, but it's your personal experience that I appreciate most. Interesting that it 'started in your bladder'...How in the world did you go from experiencing 'urge incontinence' to getting AAG dx? You're fortunate to have a diagnose with this rare disease. Can you talk about that experience? Thank you for sharing your personal journey with AAG. Wishing you the best, K

Hi Rama, As I said, I'm very familiar with the fact that pots and AAG are separate identities. Am going to stand behind the links I've already posted, and let them speak for themselves. Mayo has a panel of over ten different antibodies that they check for in pots patients looking for an autoimmune cause to pots. To your point that, (Quoting you) "All sorts of people have all sorts of low titered autoantibodies in their bodies without any demonstratable pathology" Absolutely true! Thank you for making that point. Many, many times people have low titers of antibodies, and Mayo will be to the first to tell you this is 'an incidental finding', and not meaningful. Mayo is very quick to find all sorts of anomalies in their exhaustive, and I mean exhaustive! testing, and I know firsthand they consider many of those anomalies, (including low levels of various antibodies to all sorts of things) to be 'incidental findings', and not meaningful. Rama, I've been to Mayo more times than I can count, and have had several major surgeries there. To suggest that a pots-related Facebook page has a doctor claiming (quoting you) that Mayo now send may of their POTS patients to him because they 'cant treat them' seems absurd to me. Am curious to see the Facebook page please? Mayo is far from perfect, but it's one of the finest diagnostic facilities in the world, and many of us have not only been treated there, but been helped tremendously by Mayo. I know you're not in the US, but Mayo is in a class unlike any other. Also regarding hypotension...You're saying hypotension rules out pots? Not in my case. I have hypotension and I have hyper pots. Not unique. Unusual but not unique. Am guessing you agree that many pots patients have an autoimmune etiology? Some of us with other autoimmune illnesses have good reason to suspect we may well have an autoimmune basis for our pots. When I was dx with Hashimoto's years ago by Mayo they told me that it put me at greater risk for developing Addison's 'later on'. When a person is dx with one autoimmune disease, it increases their risk of developing others. Thanks for sharing Rama. Let's try and move forward and share data that may help others looking for information on autoimmune pots data. Best, K

Alex, I understand what AAG stands for. It's an autoimmune issue that can be found in pots patients. I posted the symptoms of AAG. Here's the description under Autonomic Disorders Consortium. http://rarediseasesnetwork.epi.usf.edu/ARDCRC/patients/learnmore/AAG/ And from another study, (Dr. Low at Mayo) Pasting: Approximately 50% of cases report an acute or subacute onset, often following a viral illness, suggesting an immune-mediated process. In a recent review (Thieben, 2007) of 152 cases of POTS seen consecutively by Sandroni and Low, 6 of 42 patients (who had ganglionic antibody measured) had increased levels of antibody. Link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2671239/ AAG is a rare disease, but it is one of several forms of autoimmune disorders that can be associated with pots. Alex, I'm not suggesting that pots and AAG are the same thing. I'm talking about people with pots who also have ganglionic antibodies, thus indicating an auto immune form of pots. Best, K

Rama, Perhaps Vernino was unable to find a3 acetylcholine nicorinic receptors in pots patients, but Mayo has. Pasting: The pathophysiology has been well characterized owing to the discovery of nicotinic ganglionic acetylcholine receptor antibodies in patients with AAG, though at least half of cases presents without detectable autoantibodies. Here's the link. http://www.neurology.org/cgi/content/meeting_abstract/80/1_MeetingAbstracts/P03.024

Thank you Diabeticgonewild for sharing your treatment protocol. I had plasmapheresis done many years ago. My husband was the donor. Are you using a donor or are they using your own blood? How lucky you are to have a neurologist who understands how to treat you! Is it someone local or someone from a big clinic, like CC, Mayo or elsewhere? How are you responding to treatment?

Sue1234, Sorry! I didn't mean 'you' personally at all! Just have had people insist that all hyper pots patients have high BP, and while that's usually true, it's occasionally not true. As to the autoimmune testing Mayo does. It is not one, two or three tests. There are at least ten different tests including: Anti-neuronal Nuclear Ab N type Calcium channel Achr Ganglionic neuronal Ab Etc.... Don't have a link yet. Here is a link though that describes symptoms associated with AAG. http://rarediseasesnetwork.epi.usf.edu/ARDCRC/patients/learnmore/AAG/