bamboozlem

Hi Everyone, My apologies if this has already been posted elsewhere. Is anyone going to the Dysautonomia International Conference this year (2017)? http://www.dysautonomiainternational.org/page.php?ID=246 I am thinking of going, but I don't know anyone!

Thought this might be a fun thread. Songs that remind you of having POTs and/or good gym songs. My number one pick: Blood Makes Noise by Suzanne Vega. I think the "thickening of fear" line even captures the hyperadrenergic component!

Hi Everyone, Just wanted to throw this out there for feedback. I had been looking forward to advice from a well respected POTS doctor for months and traveled by plane to get there. It happened earlier this week. Going in, I already had a diagnosis of POTS and EDS hypermobile, and for once felt I had nothing to prove to the doctor. That feeling dissolved within the first 5 minutes of the appointment. During the vitals testing, my POTs had “disappeared”. It jumped from a resting number of 50 beats per minute to something like 65 beats – totally normal and unprecedented in my last few years of monitoring. I was shocked and got panicked. I may have been completely defensive as a result of this (years and years of being dismissed by doctors), but I got the impression over and over again during the appointment that I was coming across as a complete quack and/or hypochondriac. Or that I was highly exaggerating things. The whole time I felt like I was arguing that things were as bad as I was making them out to be. While I do have some cardiac symptoms, I find it is the non cardiac issues that are disabling me (fatigue, brain fog, anxiety and insomnia). ((They went along with the fact that I had POTs (I had a bunch of previously recorded vitals and a positive tilt table test) and I had a family member there to verify the fatigue. It was also evident that I had EDS hypermobile. Still, this has my anxiety racing. I’ve been off work for 6 months, and I don’t feel capable of going back. I need medical support for my disability claim which hasn’t been approved, and which at the moment, I think is going to be denied.)) But back to the miraculous disappearance. The next day my POTs was still gone, numbers wise. The day after that, and the POTs was back. My theory of why it happened: The day of the testing was the second to last day before my full blown period arrived. I was extremely bloated and carrying a lot of extra fluid. I think this fluid retention was possibly the reason my numbers were normal. When my menstruation fully started, two days later, my POTs returned to “normal” – generally an increase of 40-50 beats in the range of low 50s high 40s to high 90s low 100s. Right after the heavy bleeding started, I felt waves and waves of anxiety in the early afternoon and I knew the numbers would be back to usual. Three days later, and the POTs is as per usual. So, I'm just wondering, how can this brief absence of POTS be possible? Has anyone had this happen? Somehow due to increased levels of progesterone and estrogen. Or sharp drops in levels of progesterone and estrogen... It might be significant in terms of testing, if a couple days out of the month numbers are screwy and not reflective of the norm.

Hi Katie, Did you have elevated serum tryptase levels? I was able to convince a GP to order the blood test for that, but it came back incredibly low, not high. I'm not sure with any mast cell issues apply to me or not - based on a photo of flushing on my chest, the POTs doc did recommend my GP refer me to an allergist .

Hiyas, I've got a very low resting blood pressure (90/60 average) and heart rate (45-55) as well. Based on my norepinephrine levels after 5 minutes of standing, the doctor labelled it "borderline hyperadrenergic". I don't really know what that means, as I think norepinephrine raises for most people with POTs when upright. I thought it might help steer me in a direction for treatment, but no luck so far.

Hiyas, Maybe a good line of inquiry - either tomorrow or when you eventually get to see someone experienced with POTS - might involve checking your supine and standing norepinephrine levels. Do you know if this was done during your tilt? Mine was elevated - hyperadrenergic. It seems me that this has a great deal to do with why I experience life so "intensely" at times.

Hi, Sounds like POTs to me. You are definitely not alone. My journey has also been harrowing and continues to be so. While I generally know the range of my symptoms, it's is impossible to predict what my functionality will be from day to day, actually, hour to hour. Once I learned that this would continue without reprieve, I basically had a breakdown. I do not know what job I could possibly hold down. In my previous job almost all my energy was devoted to keeping up a facade of normalcy. After being diagnosed with EDS, I travelled across the country to get a TTT and POTs diagnosis, which happened last year. I still haven't found any typical POTs medications that are truly helpful yet. Basically in a no man's land in terms of the healthcare system here. My only defense has been to come to appointments armed with information. Bringing in quotes from relevant articles that are cited properly. Presenting the literature as simply as possible, and making it readable within a couple minutes. And going elsewhere when you are met with indifference, ignorance, etc. Wishing you the best on Friday.

Hi, I'm if anyone has had a similar experience with Cymbalta/Duloxetine: I took it a couple years ago, and for ten days, I felt what I believe is what "normal" people feel like: healthy, calmer, at ease in my own skin, more energetic, and generally just capable of handling everyday life. I even awoke early a few times and got to the gym, and then proceeding to have a "good" day (WOW). But then it abruptly quit working and I was back to my old POTs self. Then I took it a year ago, and the positive results came back, but only lasted two days. More recently I tried it again, and had 1.5 good days, but then back to UGHHH. I've got POTS ("borderline hyperadrenergic"), EDS hyper, and a low resting heart rate and BP. Just wondering if the brief positive spell I experienced had to do with norepinephrine and if so, how? I wish I could get back to that time and place when it was working and stay there. I've taken Wellbrutin before and it was ugly. C

Hi Everyone, I've been busy reading posts, and am fascinated by the varying onset experiences that people are describing. I've been wracking my brains for the past two years, but I can't really think of when during the course of my life that things went down the rabbit hole. I now know that I've had EDS hypermobile since birth, but I just can't pinpoint when the POTs started. Is there anyone out there that thinks they were dealing with POTs as a young child? Possibly even as an infant? (Can babies even have POTS?) Or can you remember a time when you were "normal" and then suddenly, you weren't? I can definitively say hyperadrenergic POTS was happening at least 23 years ago (as a teenager), as I tracked down a bunch of old hospital records of supine and standing heart rate/BPs, and there it is. But I believe it was happening a lot earlier. Since I can remember (even as a toddler) I have always had severe issues with insomnia. I used to be late for school daily, sometimes even hours late for school..in elementary school! And the school was just 5 mins down the road! The anxiety was also present at a very young age, although I suppressed it as much as I could. At night, as a 6 or 7 year old, I anxiously picked off all the wallpaper from the walls that I could reach from my bed. When it was time to sleep, I also used to self soothe by rubbing my foot in a certain way, and would wear holes into the sheets. I spent hours at night doing this. I had many strep throat infections as a child, but don't know if this means anything. As a baby, my mum had two issues that she was concerned enough to raise with a doctor: my freaky large pupils and my tiredness. She was told everything was fine. So, just curious. How did POTs start for you? Can you pinpoint a date and time? Or were things weird from the beginning? Best to everyone, C

Hi Rich Do you have a link to the Dr. Grubb paper by any chance?

Hi Tyler, Just curious - do you have Ehlers Danlos?

Hi Sarah, I think I can manage with the help of my folks to get anywhere in Canada. I'm in British Columbia, about 7 hours north of Vancouver. Also true of the States, but probably wouldn't be able to handle out-of-country medical bills. Best, Callie

Hi Jesse, My regular doctor doesn't really know much about POTs, but he usually goes along with whatever article I bring to the table. For the POTs diagnosis, I got my GP to refer me to an electrocardiologist who specializes in dysautonomia. Unfortunately he lives on the other side of the country (I'm in Canada). I went to Toronto to have the tilt table test (completely desperate for help at this point), and I'm able to see him once a year, but I don't want to run the risk of pestering him. I've got a referral to see someone closer, but the waiting list is (at least) two years. His recommendation was low dose florinef and midodrine. I tried it for a few days and after initially feeling better, I then seemed to feel worse, so I quit. Do you take midodrine without florinef? I like wearing the compression hose for appearances sake, but I don't think they do much in the way of improving symptoms. Hemodynamic variables in the supine position were as follows (mean values): 1. Heart rate 53 beats per minute. 2. Blood pressure 95/57 mmHg. 3. Stroke index 83.7 mL/m2. 4. Cardiac index 4.5 L/min/m2. 5. Total peripheral resistance index 12-93. After 5 minutes of baseline recording, the patient was tilted up to the upright position. She referred to some chest tightness and anxiety. Heart rate increased and there was evidence of orthostatic tachycardia. Hemodynamic variables during the nonpharmacological phase of the tilt table test were as follows (mean values): 1. Heart rate 117 beats per minute. 2. Blood pressure 117/78 mmHg. 3. Stroke index 31.9 mL/m2. 4. Total cardiac index 3.7 L/min/m2. 5. Total peripheral resistance index 20-34. Thanks for the info, Callie

Hi Everyone, I'm wondering if anyone has some insight into the results of my tilt table test. Besides the tachycardia, there was mention of "decreased alpha sensitivity". I have no idea what this means, but I wonder if it could steer me in the direction of what drugs may or may not be helpful (florinef and midodrine did not seem to help, and possibly worsened things). I have Ehlers Danlos hypermobile, and I've been dealing with POTs for decades now, but was only diagnosed last year. Typically, my blood pressure is very low, as is my resting heart rate. Here are the conclusions from my tilt table test: 1. Positive tilt table test for postural orthostatic tachycardia syndrome (POTs) - note: heart rate jumped from 53 to 117 2. Normal beta adrenergic sensitivity test 3. Normal intrinsic heart rate 4. Decreased alpha sensitivity ("calculated by the formula bp2 minus bp1 divided by 4. In this particular case, it was 37.5, which is considered below normal") 5. Normal alpha activity test 6. Catecholamine levels flagged as high (5.8) Thanks in advance for any info. Callie