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Hi madamelolo here is a link to the physicians list; it looks like there are 5 different dysautonomia knowledgeable doctors in your state: http://www.dinet.org/physicians/?advanced_search_submitted=1&csrfKey=479d417c86dc88c70ad816b7f9a60082&content_field_7=&content_field_5=&&content_field_17=&content_field_1000=&content_field_1001[1]=New York&&sortby=primary_id_field&sortdirection=asc&record_type=all&time_frame=show_all

Yes and No. I finally found an exercise protocol that I can do sustainable, and it does seem to help me feel like my brain is actually getting enough blood flow to it, and it is good to start building my body up a bit physically. But it doesn't actually affect how often I get head-rushes, or how far I can walk at any given moment, so I feel its good for my body, but I haven't seen it have any impact on my POTS symptoms.

I've had two different mri's since my POTS issues got worse. The first was on the brain to see if there were any abnormalities that could explain my head pains, and the second was on my neck because I would get visual symptoms that only occurred when my neck was tilted in specific directions. Both ended up turning out normal, though I still believe there is something wrong there that they just won't be able to see or find.

Hi Urkittenme, the 30 day holter for me didn't provide all that much new information for my doctors; for me my symptoms never really correlated to my heart rate but it did show me tachycardic at times but the numbers weren't too crazy. My vitals aren't really a good indication of my symptoms and my hear rate does not typically get as high as yours does. What the test did do is rule more stuff out and I was then referred to have a bubble study and stress test, which they then diagnosed me with a PFO, and with all the tests they were able to say my chest pressure is probably related to my POTS, may have microvascular angina but at least my heart is overall healthy.

With driving I find it can be visually exhausting if I'm driving for a long time (2-4 hours). Sometimes I have the feeling that there are too many things to pay attention to visually, and my brain is seeing all the individual things rather than the big picture if that makes sense. Overall I found that after about 10-15 minutes of driving its like my vision adjusts to all the constant eye movements and things to pay attention to, but I've also had days where my symptoms were bad and I knew I couldn't drive.

Hi Urkittenme, I did the 30 day holter monitor a while back I believe mine did not have have a button that I pressed, I think it just self recorded whenever my heart rate or vitals were in the abnormal range. I was told to take some notes of if I was doing physical activity certain days or if I experienced symptoms like chest pain and things like that. It wasn't to big of a deal it was just nice to not have to keep wearing the leads everyday. I'm pretty sure for mine my doctors basically got the information after I turned the holter monitor in, as for if you should indicate when you have mild chest pain I would ask your doctor; maybe even taking notes for when its mild versus severe and give those to your doctor when you turn the holter monitor back in?

Hi Stephanie welcome to the forum. Some general things that seem to be often suggested for patients with POTS depending upon the symptoms and your doctor's advising are things like salt and fluid loading, wearing compression stockings throughout the day, and depending on your ability to do physical exercise; things like riding a recumbent bike or floor exercises.

Hi Lexi24, so if you look at the doctors list here: http://www.dinet.org/physicians/?advanced_search_submitted=1&csrfKey=6d186899f145f6862c1d1ae2f144931c&content_field_7=&content_field_5=&&content_field_17=&content_field_1000=&content_field_1001[1]=Florida&&sortby=primary_id_field&sortdirection=asc&record_type=all&time_frame=show_all It looks like there are 3 different POTS knowledgable doctors in your state. None of them are neurologists, if your looking for an autonomic specialist who is also a neurologist you may have to travel a bit further.

Hey TCP100 glad you found the forum. I have many of the visual symptoms you have describe, maybe even more. I get "visual snow" which is sort of like having tv static across your visual field, I have negative afterimages going on all the time, sometimes see motion in my peripheral vision even when nothing is there, sensitivity to light, it takes longer for my vision to adjust when going from a bright room to a dark room, I get short trials after objects as well (like if you wave your hand in front of your face) that last maybe half a second. I have POTS, migraine, and depersonalization disorder. My doctors believe my visual symptoms are probably more linked to depersonalization disorder or my migraine brain.

Hi Lynn, glad you are going to Johns Hopkins to get things checked out. I think one of the difficult things I have found is that my body often does not make sense; my heart rate can be extremely variable if I am anxious (think 105-110 while lying down), but overall my vitals don't typically correlate to how I am feeling. So on a day that I feel awful my vitals may be normal, and typically for me my bp is always around the normal range but my heart rate is quite variable to standing up, physical activity, anxiety, and stress.

I had a fitbit while back, unfortunately it didn't get enough use so I gave it away, but I didn't particularly use it for the heart rate; I was trying to figure out how many steps I take a day so that I could see what a good average of steps per day would help me move forward physically - as well as help me find my limits. The iphone actually has a step counter in it so I just use that now but I do find the step counting aspect helpful to know my typical range for a good day.

Hi katcanny, I as well have found that my body reacts to eating or drinking certain things as well as an overall sensitivity to most medications. If I drink anything with too much potassium in it I get weird migraine like visual sensitivities, anything with caffeine makes me feel very bad, I'm much more prone to heartburn from eating acidic foods than when I was healthy, and medications such as antibiotics often make me feel really off while I'm on them. I'm not sure about the florinef side effects as I've never been on that medication, but it may be something to ask your doctor about.

Hi sb4, as has already been mentioned it may be a good idea to get your symptoms checked out. I had some very severe periods of chest pressure that would last days even months at a time - some of the time where I would basically just lay in bed all day and didn't want to be around people or noise because it might exacerbate symptoms. I basically went to the cardiologist and they did the month long holter monitor, did a stress test and bubble echo, and a few ekg's but everything showed up normal (except that I have a PFO) despite how it felt. In my case my doctors said it was probably related in some way to my POTS, possibly a microvascular angina and I've been taking cc blockers which helped bring me back to feeling normal. That being said, at least with the testing it helps rule out anything more serious. I was 27 at that time.

Hi Terrie, I have found with myself that the way I feel is often times not related to my vital signs. So I can stand for 45 minutes and except for the first 5 minutes have a heart rate that is in the normal range but still feel bad. At the same time, I have had the phenomenon you describe as having a day where I push myself a big, typically its just a more active day though nothing crazy physically, and I can definitely tell the next day that I need to take it easy - my body just feels almost worn out physically.

I use the 30-40mmhg knee high type compression stockings, they basically look like soccer socks but thinner. I do find them helpful and tend to try and wear them for at least few hours each day. Originally they started to give me a slight headache after wearing them for a while, but overtime I adjusted. I feel as though when I wear them I am getting slightly more blood to my brain, so I kind of want my brain and body to be used to that increase, hoping that when I do the little physical activity I can do, that it will give my body and brain a more normalized response.

I was not taking anything at the time, but when I first got sick, from basically that day forward I was highly sensitive to everything; lights, sounds, motion, vertigo, sleep changes etc. It was only later that I noticed that I was sensitive to most medications/ supplements, and even foods.

Welcome Biljana, feel free to ask any questions you may have, as there is plenty of practical experience to share on the forum.

So here is a link to the physicians list if you haven't already seen it: http://dinet.org/index.php/physician-list . You can look up doctors by state and see if there are any in your area or within driving range. These are all doctors who are knowledgable and literate in autonomic nervous system disorders, and may be your best bet to get an accurate diagnosis if you do have POTS or another form of dysautonomia.

Hi Recipe, glad to have you here, as was mentioned POTS symptoms can manifest regardless of heart rate or blood pressure. Seeing a specialist and giving them your full history may give them the best idea of things to rule out, as well as if you qualify for POTS or dysautonomia.

Hi MarieR, glad to have you here. Feel free to ask any questions you may have about your POTS diagnosis as there are many people here on the board with a wide range of symptom experiences.

Hi Dizzy, POTS is typically indicated by the change in heart rate, a +35 change from laying to standing. With your heart rate at 119 it still sounds like you were still experiencing the typical high orthostatic heart rate seen in POTS, even though your blood pressure was not as high as you mentioned it sometimes has been.

Hey Alex, I have had the abdominal pain from time to time, typically I would wake up with strong pains in the middle of the night. For me it seemed to be caused by eating gluten but I might only get the pains one out of every ten times. I was diagnosed with IBS after both my scopes were normal other than delayed gastric emptying with my stomach. I have been on the FODMAP diet and find that it helps with any bloating feelings, which for me I believe causes that pain.

Hi Momto, its interesting you mentioned the visual snow as that was one of my first symptoms. I also have palinopsia (trails after moving objects), negative afterimages, as well as depersonalization disorder. My visual symptoms are most likely linked to my depersonalization disorder since they are very common in that disorder, however I also have a strong history of migraine which I was told may also be linked but, as I'm sure it is with your daughter, the visual snow for me is always there whether my migraines are acting up or not. There are no known treatments for visual snow and everyone responds to medications differently. For me amitriptyline has been the only thing that helped, and it basically brought it down to lower levels to where it was more like background noise than an actual visual impediment, it also was the only medication to stop my migraine headaches. I'm on a pretty low does because the higher doses actual can cause orthostatic hypotension. That being said I still have all the other visual stuff like negative afterimages, trails after objects, it takes longer for my eyes to transition from a dark room to a light room, and feeling overstimulated visually in really bright environments.

POTS for 7 years.

It sounds like something you should ask your doctor about, especially if you are noticing a change in how high your bp is getting.