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One thing I read in a POTS study was that the blood vessels have a problem with keeping constricted when they are supposed to, I've had times where I feel too much blood is going to my brain, other times to little, I think it probably has more to do with the heart not reacting appropriately and blood vessels not acting appropriately, at any given moment rather than it be specifically too much or too little of one or the other.

I get the vision fuzzyness pretty often, almost daily at some point or another, like when it gets late or after doing something more visually demanding like when I drive for more than an hour. I also have many migraine problems, but my eyes and vision are fine, I think for me it has to do with my brains visual processing, and when my POTS symptoms are worse, my visions usually worse.

Typically when I wake up in the morning I feel completely exhausted as if I didn't get any sleep. I'll sometimes wake up with some form of headache; either a migraine that started in my sleep or just random headaches, but it only happens here or there.

Well from the tilt table test usually they do a sweat test with it to see if there are any irregularities with your bodies sweat response, and a valsalva maneuver test (think that's right) that sees how your vitals are affected the breathing rhythm. And then with the actual tilt table they see how much your heart rate increase upon standing +35 points usually is indicative of POTS, but they also see how your blood pressure is affect by this over time. For normal people I don't believe that they have the large heart rate increase.

Hi friday7, I have many neurological symptoms that go along with my POTS/migraine/depersonalization disorder diagnosis. I think one of the troubles that I find most difficult or irritating is that my migraine specialist knows nothing about POTS, the autonomic specialist doesn't know anything about migraine or depersonalization disorder, so I run into the problem of my doctor saying that yes I have POTS but that some of my symptoms are not POTS related, but then there is no answer of who to go to from there.

Hi Faye, have you had a tilt table test done? I had a "normal" holter monitor as well but with abnormal tilt table, thats the way I got my diagnosis. And my cardio who has had POTS patients before, interpreted the holter moniter results differently given my prior POTS diagnosis. Just know that many of us go through a handful of doctors before getting an accurate diagnosis. You could always ask your cardio for a referral to a autonomic specialist or see if he will order a tilt table test, it seems like that is the one "definitive" diagnostic test. Just in the mean time the compression stockings, and salt/ water loading is a good starting measure if you find it helpful for you.

My hands and feet tend to be the most reactive when it comes to feeling like they aren't getting enough blood to them, even laying down in bed and reading a book (holding it above my body) I can start feeling my hands not getting enough blood and have to shake them out. I do notice some days if I'm laying down to much my head does feel a bit weird bloodflow wise, like it just pools there a bit when I lye down, I typically do best if I'm halfway in between resting and being active; too much rest isn't good, but neither is too much physical exertion. It's a daily balancing act for me.

Hey DizzyGirls, I am currently on verapamil on a pretty low dose. I take it for chest pressure which it helps a lot, it is also a migraine preventative which is good for me but I am also on another daily med that works better for my migraines. Other than the chest pressure I don't really notice any other effects good or bad with my verapamil dosage. I get vertigo here and there; sometimes migraine related sometimes POTS related, I wouldn't say any of my meds particularly affect it, though they don't make it worse either. For me personally verapamil has been a pretty stable drug in that I don't feel worse or different when taking it, but it does help with my chest pressure, so I plan on being on it for the foreseeable future.

POTS is typically diagnosed from the heart rate increase, not blood pressure. My vitals from a tilt table have pretty normal blood pressure readings but I have the +35 points heart rate increase that is typical of POTS. From my own personal experience and hearing from others on this board, your own tilt table test is not always indicative of how bad your symptoms are. My symptoms are much worse, and much more debilitating that my vitals would ever show; one of the neurologists I went to basically explained that since POTS is still a bit of a mystery and medical science is only advanced as it is, they don't have the most accurate way of explaining or proving our symptoms. For example constriction of arteries/ blood vessels seems to not respond properly in some POTS patients, but they don't have any tests for that. I think you really need to go to a doctor who knows POTS and they make the diagnosis based on the tilt table test, as well as a full patient history.

I like the idea of it, actually am trying to get the process going of a local support group. Here are some POTS/ Dysautonomia ones that are already ongoing (information can be found on the first page of the most recent Dinet newsletter): Dysautonomia Support Group of Los Angeles Meetings held at the Good Samaritan Hospital, Moseley-Salvatori Conference Center, Los Angeles, CA Next meeting – August 16th RSVP Lynn at 213-977-7423 For more information about this group, email ecaldwel@lacard.com North Carolina and surrounding areas. dysLife Carolinas is a multi-chapter group for people living with dysautonomia and related conditions. Check them out on Facebook at: https://www.facebook.com/groups/371932662940208 or email them at dysLifeCarolinas@gmail.com

You can get migraines without the head pain, headaches are just one of the many migraine symptoms. I've have the typical headaches proceeded with aura, but I've also had all sort of "visual migraines" or "silent migraines", which basically just means I get different migraine symptoms/ phenomenon without actually having a headache. I've had facial numbness, vertigo, random visual afterimages that block my vision with a longer lasting effects of my brain just feeling like its mixed up, weird brainfog and word forgetting, and other just weird head sensations like feeling motion, or bands around my head that aren't there. There is a lot of weird migraine stuff out there, and your migraines can change over time from what my doctors tell me.

It is difficult to find doctors who completely understand this illness, and sometimes even more difficult just to be able to get appointments to the doctors who do. From my personal experience hospitals and emergencies rooms are not in any way helpful to our condition, and many doctors try to send us the psychologist/ psychiatrist route because many of our symptoms bring on or mimic anxiety and psych disorders which are typically more common among the general population. Just keep trying to find a doctor who is willing to listen and refer you to someone who can run a tilt table test, at least that test seems to give many of us solid proof that its not all just "in our heads".

I would ask your doctor to go through the results with you, but it seems to say that you have POTS as stated in the "Postural orthostatic tachycardia syndrome are indicated by decreased sympathetic response to standing and reflex tachychardia". Did you get to see how much of a jump there was in your heart rate during the test? I don't personally know how doctors test if you have hyper-POTS or not, but maybe another member might know

Hey Dancer65 I as well had a period where I would get the POTS attack/ panic attack episodes, they're pretty awful to sit with. Mine where more internalized than yours; I would suddenly feel very very bad like I was going to die or have a heart attack, sometimes I would feel sick to my stomach, and would get this feeling like I felt like I should be having trouble talking and moving my fingers though it all functioned normally. For me I typically didn't know what was happening till it was over, I told my parents to just be in the same room with me during one episode because I had no clue what was happening and thought I would for sure need them to call 911, luckily it was just one of these episodes and everything came down after 10-15 minutes. They can be quite scary though.

Since for me POTS has completely affected how much I am able to do physically on a daily basis compared to when I was healthy there is an amount of frustration that comes with such a radical change, and I think feeling this way is pretty normal. However I have notice that since my POTS symptoms got worse I do have certain days where its like I'm just super irritable from the get go without any real reason for it, or other times when my anxiety just seems amped up. And whenever I get a cold now it seems to cause me to have strong mood swings at times. I relate these feelings more to my body being wacky rather than there being a specific psychological trigger or reason for it.

I have some of these symptoms, tiles especially white and black offset ones annoy my vision but I also get afterimages, venetian blings also mess with me visually, and yea a lot of repeating patters than are found on fabrics and shirts can be a bit much to look at at times. I also have depersonalization disorder so I tend to relate these visual symptoms with that.

Hi Runnersmom, I cannot say if sever brain fog is normal for POTS, though there are many of us who do suffer from brain fog of varying degrees. In my case I've experienced two different forms of brain fog: One that began when I first got sick and had very little to do with my physical exertion or if I was standing vs. sitting. This symptom could be quite sever at times where I really could not multitask or at least had a hard time doing it. I could read but it was as though I was living in a cloud, and made me feel almost as though my general awareness was cut down. For me this form of brain fog was helped by taking amitriptyline, which is a medication I take for migraine. I was not prescribed this medication for brainfog, it just happened to help this symptom for unknown reasons. Then there is the brainfog which I associate more with my POTS symptoms. This brainfog is less consistent in that it is not a daily, constant occurrence but is made worse by taking beta blockers, which while I was on I literally could not do two things at once. If someone was trying to talk to me and I was typing on a computer I literally had to choose one that I could focus on. This brainfog is made worse if I overdo it physically, and affects me less cognitively but makes my visual awareness of the world around me more difficult, so things like driving or being in bright light situations like a grocery store are really visually draining.

Have you taken a look at the physician's list? http://dinet.org/index.php/physician-list , you may find a doctor in your area. It is important to seek out an autonomic specialist, or cardiologist who understands POTS so that you can at least get a tilt table test done to see if you have the typical hr increase upon standing.

For me the test results that my doctor gave me also included a brief writeup about the valsalva maneuver (breathing in breathing out test) and tilt table hr increase. I think my first TTT I had some irregularities on the valsalva and tilt table, however my second TTT only showed the tilt table hr increase. Honestly for me I think its just a matter of how I am doing that day; the first time I was pretty anxious so I think it affected the valsalva more. But if you get a writeup with your results it should discuss the findings so you can know how you did.

I am currently on verapamil for my chest pressure, I'm on pretty much the lowest dose but it has helped me more than anything with this type of chest pain/pressure. At first my chest pressure would last days then go away, but then I had a period where it was there for about five weeks with it changing somewhat throughout the day, but the squeezing type of sensation was soo bad some days. Now if I see my chest pressure/ pain symptoms starting up again I try to get ahead of it.

Hey bigtrouble, my chest pain is slightly different but has some of the similarities as yours; i'll get chest pressure sometimes feeling like a squeezing sensation other times like there is a weight on my chest, but a lot of the time as it persists it almost seems more abdominal, like right below my chest/ heart, and I too get that burning sensation usually when its starting to go away. To me it feels almost like I have sunburn under my skin, it is a different sensation than that of heart burn. I've had all the heart tests and their always fine even when I would have the chest pressure, but on bad days I do take a xanax and aspirin, as well as my normal heart meds. I do find the more often I wear compression stockings it seems to help me from getting that type of chest pressure as often.

Hang in there your not alone, I find my ability to deal with life's circus is largely dependent on how good I'm feeling that day; suddenly things feeling completely impossible on a bad day, and three days later I might be doing better and can reassess things more objectively. You could also try compression stockings they may help. I too have hmseen an autonomic specialist who was more just for the diagnosis but not continual care, it is frustrating, I'm still trying to find a specialist close to home, and one who has the time for my random symptoms.

I have vertigo as well sometimes it seems more migraine related other times autonomic, but for me it never effects my overall balance it just feels like it should. I have felt that feeling as if you had just been spun around a few times but typically the dizziness/ vertigo stays in my head, so visually it gets annoying to follow people with my eyes as they walk around or turning my head quickly and looking, even bending down makes me feel off balanced but I've never actually fallen over, just felt like I should be.

Hey evergreen I've had some different food related reactions that I'm not quite sure what to make of; if I eat anything with too much potassium (coconuts and coconut water is included in this) then it always causes me a weird migraine like neurological reaction like my brain feels almost like it is wrapped in webbing and visually I'm more sensative to lights/ flashes. Caffeine I cannot tolerate in any amount and it immediately just makes my head feel bad, and more recently I've found foods that have magnesium causing the same issue, not sure if that helps.

Similar to p8d I had a period of random panic attacks that I now associate more with random autonomic episodes. I have notice that my anxiety disorder has been worse since my POtS symptoms got worse, I feel like heavy levels of anxiety just seem to exacerbate the autonomic stuff and vice versa; now if I'm anxious my hr just stays elevated so even when I begin to relax psychologically it's like my body won't. I think the autonomic dysfunction just gives the anxiety more physical ground in which to affect me, if that makes sense.