ann35016

I have the same problem. I have been dx with dysautonomia(POTS) Sometimes I dont even think that is what i have because I never have a rapid or slow heart rate. I do have severe palpitations though( pVCs) I noticed that every time it get really humid (during or after a heavy rain in hot weather, or when it is really foggy) I feel like i am smothering to death. When coming home the other day from the store, I had to stick my face in the air conditioning vent to breath. I felt like I was in a sauna and could not breath. It felt like someone was standing on my chest. I started having strange skipped beats again. I get really anxious when it storms because I get so unable to breath. I have always been a cold natured person , but now I have to leave the air on while I sleep or I smother. ann

Miriam, What were your other symptoms? I dont have a racing heart rate or any kind of diarrhea. I also dont itch. Things like this are hard to dx. How did you manage to finally find out what is wrong with you. I just dont have any luck with dr,s. ann

I never had it happen at all until a few weeks ago when all my symptoms started .Its really bad when I am having palpitations. Does your face actually burn? Mine is so bad I have to put a wet, cold cloth on it. It also seems worse at night. I dont stay pink. It seems to turn back to normal later. Even when I am not having palpitations it happens . It lasts anywhere from a short time, to several hours. Does this sound like Rosacea maybe?

Hi Everyone, I just recently was dx with Pots. This was mainly because of the ttt. I also have a sis with pots. I am still not 100% positive that this is what I have. Unlike my sister,I never have a rapid heartbeat, only skipped beats, or pvcs. I went to the dr when I started having near fainting / dizziness. My blood pressure has always measured normal and my heart rate is normal(never too high or low/ only palpitations.) I also had sob . Usually, when the palps were at their worst, I would get a really , really hot face. It feels like a blistering sunburn. It is not a rash. Now I get a flushed face even when I am not having palps.(I dont get a sweaty flush, i get a dry flush) I am on beta blockers and they really help the pvcs. The palpitaitons are better, but I still get really horrible facial flushing most days. (especially at night) I have been given 24 hr urine tests that ruled out catecholamines or metas as well as the 5Hiaa test for carcinoid syndrome . All negative. In additon, by dr gave me an ANA tests. The first test was a low pos. They did much more extensive bloodwork which was sent to mayo and it all came back negative. I have been checked for female hormones and have had 3 different types of thyroid tests- everything has come back normal. My cbc was normal and the cardiologist( I was admitted to the hospital when the palps started) did and echo , stress tests(nuclear) and basic metabolic panel. All also normal. He dx me with benign pvcs. Another dr at the mvp/ autonomic disorders center later dx me with pots. It has gone from slightly annoying to something that keeps me up at night and makes me very uncomfortable. It doesnt feel like I am hot . It feels like my face has been chemically burned. As a matter of fact, i had a tca facial peel(medium peel) several years ago. It feels a lot like that, except no stinging, more burning. I usually put a wet cold washcloth on my face. It can last anywhere form an hour to most of the night. It also affects me in the daytime. I am also having some visual disturbances (strange sensations,but good focus) ,stabbing pain on my head and a strange sleep problem . I just am curious to see if anyone here is having burning /flushing of the face. I feel like I either have something other than pots, or something in addition to it. I know there is a whole range of different symptoms for different people, but even the doc said that I might need to see a neuro over the other problems. any input is appreciated. Thanks

Mkoven, I just read your post and cant tell you how much I have looked for these symptoms on here. I have the same sleep problems.I posted about this earlier. I just became ill recently. My sister has pots but i really didnt think I did because our symptoms are so different. I started having skipped heartbeats, never racing, and feeling like fainting . I also get extreme flushing on my face almost daily. I am now on beta blockers for the palpitations. Dr. dx me with pots a few days ago. I still am not convinced. The sleep problem is by far the worst . It is not a dream . I am fine laying down. Its just the point where Im almost asleep. I feel like I am falling or something. Almost like laying on a waterbed drunk. Sometimes I feel like I am starting to hang upside down. Its very odd and frightening. I will jerk awake sometimes, and then again , sometimes I just slowly awake catching myself holding my breath. Its like my breathing is extremely shallow , almost like I keep trying to exhale over and over-- instead of inhale/exhale. I feel drunk and like I am passing out instead of falling asleep. Sometimes it is almosta spinning feeling. Pressure on my head and throat . Almost like someone is slowly choking me unconsious. The other night I had nightmare and when I awoke i could not open my eyes no matter how hard I tried. It took several minutes to try.(I do realize that is sleep paralysis. I wake up feeling really rough every day and feel like crap all day. I feel like a have a terrible hangover. (and I dont drink) . Please let me know if you find out what is going on with your sleep problem. It is absolutely terrifying and is ruining my life. I tried Rozerem but it did not help. I tried another sleep pill and it did not either. My insurance wont pay for sleep studies and I am afraid that serious sleep meds will mess with my palpiations. I have pvcs . (my heart sometimes skips 4 or more beats.) A lot of meds messes with this a lot. As tired as I am all the time it is hard for me to fall asleep. I am also terrified to go to sleep . I feel like I am going to die.I dread bedtime and pretty much watch tv. Unlike other pots sufferers I feel my worst laying down. I am also having stabbing pains in my head and a strange visual problem. My vision is fine as far as focus, My eyes just feel funny and are overstimulated. Like they just want to go nuts and boggle. I feel like it is work making them look at one thing. They are also extemely light sensitive now. It is really hard to explain. Im ok just cooking dinner. If I go out to walmart where there are lots of items my eyes feel overstimulated. Like I have to force them to be still. Instead of my eyes feeling strained, they almost feel over- relaxed. Very hard to explain. especially to a dr who thinks that sounds nuts. My eyes really move around alot at night .Sometimes when my eyes are closed they wiggle so much it keeps me awake. Also when they are closed, it appears that they are jumping up and down(even though my eyes dont show objects because they are closed, I can see light thru my lids and it is a jumping screen feel.). I have never , however , seen actual object jump up and down with my eyes open in the daytime. I am getting very scared. I am starting to have sharp stabbing pains in my head on both sides just above the sides of my forehead on both sides( above the temple). The strange visual problem in the daytime is making it very difficult to drive. Even though everything is in focus, my impulse is to strain and squeeze above my eyebrows with my fingers. It is almost the same sensation as if someone placed their finger right between your eyes. (but much stronger) It doesnt affect the focus ,it just is a weird sensation, but very strong. It makes me kind of nauseated. I have an appt with a neuro this month. I am starting to think maybe it could be a tumor or something. My smptoms are stabbing headache pain, pressure in neck , severe palpitations, extreme facial flushing , visual problems and a sleep problem. I am so tired of drs. To top it off, my insurance company is claiming my pots / mvp is pre-existing. No telling what they will do with the claims when I go to a neuro. Pots causes so many smptoms they can relate anything to pots. I am just 33. I have 3 kids to take care of and I feel like and old lady. I dont smoke or drink and was on no medicine until November. Now I take Klonopin, and altenelol. Other than flu shots and physicals and one bladder infection, I never have even had to go to a dr.(othe than pregnancy) The palps are better, but other than that, my life is nothing like it was 2 months ago. Please let me know if you find any answers.

I have not been diagnosed with dysautonomia , but have an appointment this month in Birmingham. I was shocked to see this post. Although my first symptom was really bad pvcs , the palpitations are better on the beta blockers. At first , I thought my sleep problem was from the palpitations. But now that they are under control, I realize I am having this sleep problem anyway. I feel o.k laying down and even closing my eyes. Its when i let go and I am just about asleep. I feel like I am falling or sinking in the bed .Even with my eyes closed I feel dizzy, like I am floating on water. I suddenly awake gasping for air. When I am really sleepy, although they are scary, I can fall back asleep just minutes later for the same thing to happen again. It s really scary. It is also usually when I lay down and am really, really tired. Last night it even felt like my throat was tight. It is such a strange , bizarre symptom. I described it to a new family Dr. and he just kind of smiled. I think no matter what I say, they think it is anxiety. And it is so hard to describe. It feels like I am choking or gasping for air and falling / sinking at the same time. This happens not just a little. It can go on all night . I awaken every few minutes and it is exhausting and depressing. Then I can have several days and sleep o.k. It almost seems seizure like. It is so frustrating, because I have had insomnia and been tired and unable to sleep. But when this happens I am really sleepy and its like my body just wont let me. Its also very frightening. I feel like I am dying. Let me make it clear that these are not dreams. Just as soon as I am almost asleep I suddenly jerk awake. It is very repetetive and can happen all night long.I have not even been diagnosed with anything yet, so I really dont know who to even go to about this. ann

Thanks for the encouragment. It is really odd that I may not even have dysautonomia but I am getting support from so many people here. I went to the Dr. today. He again seemed to constantly tell me to calm down as if it was no big deal. He did finally put me on an event monitor for 28 days. He also upped the dosage of tenormin to 50mg. I have blood pressure on the lower end, so a big dose wouldnt be good. He also wrote me an rx for valium. We live in small town. I would love to have a woman dr. who I feel like I could communicate with more, but at this point I dont have a lot of options. I cant even drive. The closest Docs out of town are an hour away in Huntsville or 2 hours away in Bham. My husband is taking off work to take me, so right now I am just gonna try to keep him until I see that I am getting no better/ or he doesnt seem to look for more answers. He said he does not think anything is wrong with me. I assume he means other than the pvcs. He says to just up the dose and all will be o.k. He kept saying I need to stay calm. I told him I was not even thinking about my health problems yesterday when I nearly collapsed at the store. I told him that as soon as it was off my mind, another event like that reminded me. I also told him it is ruining my life. I feel like he is just assuming it is the pvcs and i can see why . It is the main symptom besides the dizziness, fatigue. I told him the cardio told me that the pvcs are not causing the dizziness. I told him although I had many pvcs during the testing, I did not have a dizzy /fainting spell. I told him that usually the faint feeling comes when I have been standing and moving a while. Like when shopping. He did agree that the event monitor was the only way to catch it. I told him my fear was that many pvcs in a row are maybe causing v tachycardia-- which can lead to v-afib. That is very worrisome to me. There is something going on besides just the normal pvs when I feel dizzy. The only bad part is the event monitor will not be able to record if I have a drop in blood pressure- which is maybe why I am having these. Hopefully increasing my medicine will help me. I will update soon. Thanks everyone for your replies Ann

I just wanted to thank everyone for their support. I am really terrified that something may be life theatening. Last night I couldnt sleep. It felt like someone was sqeezing my arms. They felt like I fell aseep on them. They felt kind of numb and then throbbed, like the circulation was cut off both of them .My stomach started burning too. I know the stomach part is not just stress because it is the same pain I had over two years ago. I am trying not to worry, but the whole picture is looking really bad. Knowing that I am not getting enough oxygen to my brain and am shaky and faint really scares me with these other symptoms. I have to raise my kids and it is a huge burden knowing I could get terrible news. I have such a bad feeling and dread about this. I worry that they wont be able to find what it is, or when they do, that there wont be anything that can help me. I go to the dr today. I have no idea what he will do or where he will send me. If I just had a clue of what direction to go in and strart fighting, then I would feel better, but I dont. The last time I had a dizzy -lighthead episode, I could feel my heart pounding and was sob, but I am not convinced that I had pvcs. This makes me wonder if going back to an ep cardiologist would even help. Maybe the pvc arent causing this, maybe something else that is causing the other symptoms and is causing the pvcs, too. I only live about 1 1/2 hours from the dys/mvp clinic in Birmingham. And although I really dont think this is what I have, I feel like I need to rule it out. If I do have it then I dont have to look for cancers or vascular problems, because it causes such a range of symptoms. I still plan on searching every other avenue with my dr. but I just dont know how far that will take me. In the meantime I scheduled with dr. moore on dec 27th. I can always cancel if I find out it is something else before then. I am so upset that this has happened right before the Holidays and I am unable to do anything. I feel so guilty. We are huge Christmas fanatics and it takes us days to decorate. I cook a huge amount of food. I definitely wont be able to do any shopping much. I think I am starting to really feel the anxiety. Thanks everyone for your support. Ann

Hi everyone, I am new to the forums and would like your thoughts. Please be patient - I know this is a long post. I would like your thoughts. I have a sister that was diagnosed a few years ago with dysautnomia. She has pots. I am six years older and have started having some terrible health problems. My main complaint is(premature ventricular contractions) pvcs/ palpitations. I can feel my heart beat in my throat ,neck and chest pounding. I can feel my heart skip beats and beating erraticlly. They are every day and are nearly constant. They do not stop when I lay down, and sometimes this makes them worse. (especially on my back or left side.) They often make me short of breath and dizzy /lightheaded. I get really dizzy when walking around the grocery store and have felt like passing out several times. I sometimes have have to squat next to my buggy. One time I had to squat down in line because i feared I might hit the floor. I have never actually passed out , though. I am now afraid to even leave the house because if I am shopping or out long enough, it happens almost every time now. I dont want to drive I went to my family dr and he brushed it off and kept telling me to calm down. He listed to my heart and could hear them clearly . He ordered a chest x ray and ekg. The ekg was abnormal. They put a holter monitor on me for 24 hours but only had it on about 6 minutes and said it was called in as abnormal, I was having several pvcs. The doctor would not let me drive. He admitted me to Trinity Hospital in Birmingham immediately. My husband had to pick me up and take me to the hospital. Myheart was pounding and flip flopping constantly. When I got the the hospital, they did an ekg, nuclear stress test and and echocardiogram. The cardiologist on call saw me that night and explained why might dr had sent me. He showed me the ekg and pointed out places that showed my heart skipped four beat in a row. He said they were pvcs and they would check and see if everything else was o.k. Because my stress test and echo showed normal, he allowed me to come home and take tenormin (atenolol). I am starting on a low 25mg dosage. My palpitations are not as visible in my chest and throat(heartbeat isnt as forceful) but dont they it is really slowing them. I had my husband drive me to turn in a 24 hour unine catch to a lab and we walked around a little at the store. I shopped at one store for about 20 minutes and although I felt bad, didnt feel faint. We drove to another store and as soon as I got out I got short of breath and my head started hurting. It felt like somone was sqeezing both sides of my throat. My pulse was banging in my head and neck and I got really dizzy and lightheaded. I didnt feel like I would immediately faint, but very close. I had to turn around and leave. My cardio says pvcs are not dangerous in a normal heart , and my other tests showed nothing wrong. I asked him if the pvcs were causing my dizziness and he said yes. I told him my main concern was feeling like I was going to faint and again asked if that was the cause. He said if I felt faint that it indicated blood flow was not getting to the brain and pvcs would NOT cause that! He says he doesnt know why and may never know why. Some of these are similar to some types of dysautonomia, but the more I have researched it ,the more it seems like it may not be. If anyone else has had similar symptoms, please let me know. Of course, i realize that it is possible that I do have dysautonomia, and that the symptoms have a wide range. But looking at the manner in which they occur(i.e. NCS- blood pressure changes upon standing) I am just not sure.Mine never happens just upon standing, but usually walking around. I have almost completely ruled out pots. My heart never races or goes up upon standing. I have checked my bp at home and standing doesnt change it. I am really worried. I feel like something is really wrong with me . I am not able to even function. I have Thanksgiving coming up and Christmas to give three kids. I am not able to even shop or drive. We are living off sandwhichs because i cant even cook. I worry that something may be wrong that is life threatening. I need to go and have dysautonomia ruled out so I at least know to search for something else if i dont have it. I have a sibling with pots, but I feel pretty strong from all my research on the dinet site and boards that POTs can be ruled out. It also really doesnt sound like ncs because my bp and pulse. I also have bad pvcs while laying down. This is why I have doubts about having it- i dont have high blood pressure. I have always have normal blood pressure. Even when taking my stress test. My pulse does not rise or drop much at all when I stand. Laying at night is even worse sometimes with the pvcs, it certainly doesnt alleviate them. I dont have a racing pulse, or even a slow heart rate. I have arrhythmias and skipped beats, but a pretty normal heart rate. But , I do on the other hand have some odd symptoms that some people with dysautonomia have. Strange symptoms like- before I feel faint, I get very flushed and shaky- instant fatique. Its hard to explain but feels like I am very hungry or thirsty. It also makes my chest , hands and arms burning hot. (usually they are very cold) I also have stomach pain, constipation, my face sometimes feels hot and almost sunburned. The other night I could sleep because my arms felt numb, like they were falling asleep. I have heart palps. shortness of breath during dizzy episodes. Even when I have near fainting episodes, it is never from just standing. It has never happened except when I am standing and walking a while, such as shopping. Even when a sit down after an episode, i still feel lightheaded and s.o.b. Sitting doesnt stop it. These symptoms just started a few weeks ago. I know this is a long post but your support and responses would be very aprreciated. I went from a mom of three playing tennis 3 days a week with my girls to someone who cant even pick then up from school or shop for groceries. Another reason I want your feedback is so I will know how to proceed. Of course I have an appt. with a dysautonomia clinic after Christmas. But I still need to know how to proceed until then. Should I go to another cardio who is an ep or rhythym specialist? I feel like I am in danger. I feel like my heart is skipping so many beats in a row and having so many pvcs, that I may be having ventricular Tachycardia. That can lead to ventricular afib., which is deadly. For whatever reason, my brain isnt getting oxygen. I feel like my heart doctor wasnt straight with me. I think he thinks Ill be fine because my heart is structually sound. But if the heart is misfiring and having so many skipped beats, maybe that is why I am getting so sick. He is not an ep specialist. I need to know why blood is not getting to my brain. The cardiolgist also said I did not have mvp. He also said he was writing it in my record as benign pvcs because they were not life threatening. If they dont cause dizziness and nearly fainting though- then I still have a problem. I have done research on the net about pvcs and most drs say they shouldnt cause dizziness , but one article I read said that they rarely can, because the cardiac output is diminished. I feel like my heart is skipping so many beats, that its the same as a very slow pulse, even though the rate is normal when my pulse is measured. My main dilemma is this: Either I have another serious health problems that is also causing pvcs and dizziness. Or, my heart having pvs and skipping so much is the problem and these other symptoms are incidental. I want to see a rhythm specialist cardiologist at uab, but they make you send records first and decide if they will see you. I know that this is a very long post, but any help would be appreciated. I have never been an anxious person and have not been depressed, but everytime I go somewhere and nearly faint, it makes me anxious and upset. I am only 33 years old and suddenly feel hopeless. Any posts appreciated.