lieze

I think that one of these would really help me since I get poo'd out if I walk too far. I'd love to get one-but they are very expensive. I have been bummed out thinking there is no way I can handle like a trip to the zoo or amusement park with my family due to all the walking but this would make everything so much easier I think. Has anyone tried one. I did see there are several dealers in Ohio. I guess I could call around and see if they have any used ones? Anyone ever think about one of these helping. If could I would use it every where. Like my biggest problem at work is being able to cover that entire building with leg power. I know walking is good and I would still try to get walking done but I'm thinking it would open up a whole new world for me. Anybody else consider this or try one? lieze`

I'm sorry to hear about this. My episodes are unpredictable too. And I get real quiet and stare also. I am noticing a lot of emotion with mine. Like I have to hold back from bursting out crying and I feel a cloud of depression coming over me. I get nervous to go anywhere at all just because I never know when it will hit me. I think it's great that you have such a positive attitude. Want to try to work through this, and are still willing to be so active with your family. Thumbs up. Let us know how you're doing if you can? Check in? I'm interested to see if those things help? I was doing daily vit c and it seemed to help but this past bottle I got is really nasty bitter and leaves sore places in my mouth. The other type was chewable and only $2 at Walmart I'll have to get some next trip. I'll let you know if it works for me. (another thing to try) Oh also if you know you are going out in the evening pace yourself during the day? Take breaks? Try to save yourself for that event? lieze

Hey I need help with career ideas. My boss is doing staffing cuts and they are going down to just primary nurses only. The treatment nurse position I was doing is being eliminated all together. I will probably go to an on call status. I probably cannot handle physically that primary nurse position-the physical demands of it. I will probably just go in randomly when they call and try to make it through one day but... Any ideas of good careers or jobs for people with POTS. I think it would be nice to work maybe just 4 hr shifts? And I don't know that I can handle standing that entire time. Also after I get my kids in school I wouldn't be opposed to trying to get further training or even go back to college part time. I'm trying to think of future here too and not just interim. Any ideas? My education right now is licensed practical nurse. I thought about a pharmacy tech position? I think though I'd probably be on my feet the entire time, not sure how I'd do? I also thought as our local hospitals have eliminated lpn's and gone to all RN's maybe a unit secretary position might be nice. even on an on call basis. Maybe do the both? My current job on call plus a secretary position on call. I just have to think about the walking/physical demand mostly. I don't think my body can handle night shift right now either I get dizzy when I get tired. I'm trying to see the positive in these changes at work and not just get bummed up so I'm trying to think of the opportunities it creates. I really don't want to do another nursing home-been there for 18 years and I think it would be fun to do something different.

I think it's probably normal to have the nurse want you to discuss this with the doctor himself and probably a good thing. When I got back results of an abnormal echo the office staff got it all wrong and after I spoke to the physician and an internist they said there was nothing wrong with my echo. So unfortunately you'll just have to wait to get in to see the GI doctor and just because they want to see you doesn't mean it's horrible news. Just makes us as nervous as heck!-waiting to find out. I am still waiting for my appt with an endo at Cleveland never has come. I hope it all works out for you. I know you are having pain so it makes you worry more I hope they can get you help with that pain. We got the knock off temperpedic bed and it's hurting both of our backs. It's the Sealy brand? I'm not sure it's the best thing for back pain sufferers. I think all of the Sealy Posturpedics I've gotten are better than this we just notice after about 5 years or so they don't support our backs in the way we need here. Hang in there. lieze

Maxine I don't blame you-sorry about missing out on a tasty meal though. But I get very leery of spicy food. Once in Panera bread the spices just about took my breath. I had to stop eating. I just felt horrible. I get leery too just eating things out where I'm not sure what is in it. If I take a bite and it is even garlicy i get nervous because I had my first intense episode after leek soup. I had a bite of an onion accidentally the other day and it sent my heart racing-that's okay I can live without them. I just feel like I'm playing Russian roulette with food. Thanks for the info. lieze

This might be what I'm getting too. Mine is painful like a contraction but it just seizes up and it feels as if it's right at the point of my cervix. It's horrible pain and usually lasts about 20 minutes or so, at times it feels like it moves back towards my rectum and up closer to my urethra. Sometimes I go and try to urinate to relieve the cramp and no urine will come out because I am just in a solid cramp down there. I have been experiencing this for the past 5 years at least. I've wondered if it wasn't from birth trauma. I had third degree tears with at least the first 3 kids? Took an hour of suturing after all 4 births and I had episiotomy's with at least the first two. I also had a forceps delivery first baby. I just know that after my first I guess I felt pain running down a nerve into my buttock so I don't know if there was damage to that nerve. I feel the pain going down that same pathway when these cramps start. I probably have about a dozen a year. And the heated rice bag helps, bearing down feels like it helps, and last time I rocked back and forth and I don't know if the rocking helped or just helped me deal with the pain til it let up. My pain is so intense that I cannot feel it letting up until it entirely stops. It almost has a lingering feeling even after the cramp is gone. The last time I got it I also felt nauseated. First time ever for the nausea.

Okay I'll tell you everything I know about pheos and it some may be a repeat of what others wrote. My endo wanted to scan me for a pheo because my serum norepinephrine was 866? The thing that didn't make sense was my urine was negative and I do not have sky high blood pressures or nausea. I also saw that flank pain often occurs with pheos. My family doctor said her aunt had a pheo and she would go for periods where she was fine and then she would get really sick. She said what they see in the office is a person will come in abnormally sky high blood pressures but then be fine the next day. She said normally they find pheos by accident and I can't remember what else she said about that. I chose to follow up with my cardiologist because I found online that a high serum norepinephrine was consistent with POTS! In actuality they should have had me lie down for 30 minutes and then do the draw and they did not. It also didn't make sense that my urine was normal. My cardiologist at Cleveland agreed. He said they scan all kinds of people there for pheos and find one about every 7 years. He said they are very uncommon. He also said the 5 day scan my endo wanted to do wasn't even the next test I should undergo if a pheo was suspected. He agreed that I could possibly have POTS but thought that I was showing sign of improvement and was supposed to refer me to an endo there in Cleveland but I haven't heard anything yet. They also did repeat my serum norepinephrine there that day and I have not heard what my results were. I have been told by that it sounds like I have hyperadrenergic POTS. Well would the virus have induced that because my symptoms started right after the virus? lieze

If you can help me know what is happening please help me to understand. I would have been in tears but I was in front of people and I had that overwhelming feeling of depression that I just am not going to be able to work or function normally. First of all I feel so much better. I don't think I'm doing the vagus nerve thing any more, my head feels clear, I'm not getting the head pressure or the visual stuff. I haven't really felt any drops in blood pressure etc etc. Been feeling pretty good around the house. I worked today my 6:30-1:00 shift. About 10:30 it hit me. I had been having to walk the halls all morning and boom. All of a sudden I could feel my heart rate pick up and like I wasn't getting enough oxygen. I checked my pulse ox and it was 92. That made me nervous. I wanted it to say 100 so I could tell myself it was all in my head. I question sometimes too if I just don't get good circulation in my fingers and get a low number because my fingers are always cold, always have been and sometimes my nails even get a bit dusky due to the coldness and things. So on the instrument it gives your pulse and it was 112. This was with me standing still. I decided since it was lunch time I would get a nice cold drink and just sit down to recover. I did that but symptoms got a bit worse. I was getting the weird sensations in my chest where it felt like my heart was just racing and even stopping-I know how can it do both at once-which was it? And the funny feeling in the head and the weird zaps that we get of energy surges or whatever they are. All of those feelings ended up getting me back to normal. I could tell the oxygenation was improving.But in those moments it's just like you get these impulses to just call the squad. Like you're going down. But it passed all within maybe 15-20 minutes. I could tell after the lunch I was getting better. And then I went and relieved someone else for lunch so I got to sit longer and felt fine. I think I had one more zap that went through me but otherwise felt good. I rechecked and pulse ox had come back up and pulse was down to 91 even after walking to the place to check it. I was able to finish my shift but as I walked to my car I felt like I was walking through water. I'm fine now still felt weird when I got home but took a nap and feel as if I'm totally recovered. In those moments I felt bad it was like the realization that I just couldn't do this anymore. Disability was floating through my head. I don't understand what is going on with my body. My holter since my ablation was normal just tachycardia. Maybe that's all I experienced this time too besides the drop in O2 level. Are there others of you out there functioning and just dealing with these blips-how do you do it? Does it ever get any less scary or traumatic? I guess I would say I was feeling some chest pressure along with my symptoms-it would seem as if a person was damaging themselves trying to continue on when feeling this way but I guess it just feels a lot worse than what it was. I don't think I could deal with these symptoms on a daily basis and work. It's part of why I gave up before-I couldn't handle feeling that way at work. Then I was doing the vagus stuff though where I would have to use the toilet and get the swings of bp with it. As soon as I got home too I noticed I just felt safe and calmer just being home I know I can take breaks and lay down here in between tasks. Oh and after that little blip I had I felt really tired-exhausted like I just wanted to lay down and sleep. I guess it's very much like the episodes I've always had just at a much lower intensity, but it still wasn't fun. lieze

I get that congestive heart failure feeling but that's all it is. I've had two echo's and even in my worst I never went into heart failure. My heart just sometimes feels funky. Like it's big and bloated and just weird. So many weird sensations with this! Also on a day where I get that feeling an hour later I can snap out of it and feel just fine. The cardiologist just shook his head at me and said this isn't your heart.??? lieze

I slept with support under my neck last night and I feel a lot better today. I wonder if anyone else has tried this. What I used was just one of those neck massage pillows from Walmart? It was like $3. I did not fasten it because I didn't want to feel confined. I just put it behind my neck and it felt like heaven right away. My neck doesn't feel as creaky today. I'm going to keep on trying that and see if I see continued improvement with my neck issues and headaches even potentially? Also just my fatigue with being upright and the neuro effects I get-the dizziness, etc. lieze

Oh Angela so sorry to hear that. Be careful if you can. Maybe if you feel it coming sit down til you get your bearings? Not trying to say something stupid here so if you just can't help it-ignore what I just said. I get really dizzy headed and feel as if I'll fall I just haven't done it yet-knock on wood! lieze

I appreciate your input with this-wanted to let you know I saw it.

Well here I thought I had found something that might help me that Pocari Sweat but I couldn't handle the Magnesium in it. My bp's dropped into the 80's drinking it. I drink some Gatorade but I think the taste gets me. I drink loads of milk! And I'm actually starting to drink some water but I notice Dasani also has Magnesium in it so I'm watching that and just filling up at our Culligan tank in an empty bottle. So I'm really considering hitting the carbonated beverages again the caffeine free cola's etc. I know the sugar isn't that great for me but I have lived on huge amounts of liquids for years and I have to do something to get fluids in me. I really feel it when I've been skimpy on the liquids. What is your favorite-cause this gets old really quick doesn't it?

well I think I kind of out smarted myself today? I'm not so sure. I needed to go to the grocery for just a few supper items. I am still at a point where all outings are a bit stressful for me triggers anxiety. So I went out and got in the car sure enough there I went. Felt like I could wilt like a flower, heart started beating irregular, even started the engine but turned it directly off came in and laid down instead. Symptoms stayed very mild but it felt good to just lay down. Waited 20-30 minutes took my blood pressure was still running 90/50 pulse was regular. Felt so drowsy like I could just fall asleep. Visualized taking a nap waking up feeling refreshed-then going to the store. So after I don't know maybe 45 minutes got up to try it again. Got in the car nothing! I did fine all the way, all the way through the store which was as I promised myself a very short trip. Just got maybe a dozen things. And home again with a smile on my face because I totally avoided symptoms. I didn't get that short of breath feeling or the gas feeling sorry so much info. So I"m curious since most of my at least anxiety happens when I have to be somewhere. Obviously I can't do that if I am scheduled to work which I am not really ever just the every other weekend. Yeah I've been symptomatic on the way and getting there. I wish there was a way to work more dry runs into my routine.

Well I was only bedridden for a day or two after my ablation. I could not get up and walk across the room without feeling like I was going down. I'm not sure why it hit me so hard was it the 24 hours I spent fasting? Or the procedure itself? I improved a bit in the next couple weeks but knew I didn't have the strength to go back to work yet. I went out in my robe on the front porch and kind of crumpled right there wondering what was wrong. I was so bummed because I thought the ablation would solve all of my problems. Thank goodness no more SVT's but the weakness was very obvious. So I thought it was our house. I had buried a pet mouse that just turned over one day and died and our cat all within a 3 month period and it dawned on me that my suspicion of mold was probably correct. I had my parents come and pick me and the kids up. I had trouble there too eating normally. I would have episodes after I ate and was losing weight. And just the endurance thing the ability to get up and walk around. Well for me I would just feel horrible. Never fainted thank God but this horrible wave would go through me that felt very bad, like I was going to collapse. This would also happen after showers. I would do our laundry, have to go down the basement steps and back up. My heart would be pounding and then I would carry it out to the line to hang it. Those first couple times I felt like I just had tunnel vision. My breathing was very difficult but once again, nothing bad happened. I just had to keep doing it until it got easier. Looking back I don't know that I would have pushed myself quite that hard. Because even just sitting there in the backyard in a lounger a wave would just go through me where my breathing got difficult everything would tighten up and it's as if time would stop. And then in time it would pass. Short trips in the car were difficult but they had a pharmacy right down their street turn the corner and down the road so those were my first trips. I actually had to break even that up a couple times and pull into a parking lot and break half way through. Collect myself then do the rest. I don't think anyone had a clue as to how much I was pushing it. But by doing this I have slowly worked up to being able to shop. I still get symptomatic when I go. Less difficulty with my head feeling weird these past two weeks, I get a gassy feeling in my stomach that feels horrible, I mean I just get weird feeling in my torso and up to my head just from simple gas. As that passes I'm okay. If I start feeling weird I stop and stand still a moment or just go very slow. If needed I would just sit right down on the floor. Also I've been carrying a water. I don't know if it's the swallowing itself or the cold water in my stomach but it helps relieve my symptoms it seems. The daily exercise some activity is important even though you feel crappy. Just laying in bed I would struggle with my breaths. My lungs would feel heavy. Once I got up and started moving thank goodness I was able, that got better for me. I feel the drop in blood pressure like right now I've checked it and I'm only running 90/50 and dipping down into the high 80's. I don't feel so good with that. I feel much better when I get it up around 100 systolic and activity does that for me. I would encourage you to go for it and just either try to post your success and get feedback or concerns if you are able, I'm not sure what your condition allows right now so be careful. I just know for me it's been presyncope for me if even that. I get creepy sensations in my body like I almost feel things running or trickling like I've blown an aneurysm and I am okay. I do not have an official POTS diagnosis and am not on any meds besides vitamins and iron.

I have this too. I am just trying to stay as calm as possible and pace my day since too much activity also triggers it. So what I feel like I have are almost activity induced panic attacks. They vary in severity and basically I just feel crappy when they happen. At first they were very scary with the full blown cardiac symptoms, chest pain, irregular heartbeat. What I realized right after a bad attack where my throat had closed up on me and my heart was skipping all over the place and I ended up curled up in a fetal position on the floor in a spare bedroom holding my cell phone was that this only happens when I get really worked up. I wasn't intentionally doing anything to bring it on but it was a process where I allowed it to escalate. I did have the bad stuff at bedtime too and it just seemed to come out of the blue. Also the middle of the night stuff that wakes you up out of a dead sleep. I'm not trying to say this is your fault or that you can control it. Just saying that I am working to really focus on being calm staying calm. I notice sometimes my entire body is tightened up and stiff and I don't know if this is subconscious or what? But I have to actively try to relax. To let those strained positions slowly release. I have no idea how this started for me? Why I began to do this to myself. I have always had some anxiety but this is so much more intense and I may be pumping out way too much adrenaline. Also I have to stay a bit active-go out-drive my car regular-if I don't huge panic. So I have to try to stay calm upright and active in many ways so nothing shocks me then when I do it. Strange I have to say-never imagined anything quite like this. I think it's great that you are working with both the cardiologist and the psychiatrist. Together maybe you'll be able to find a nice balance. Let us know how things go for you-there are others experiencing the same thing and maybe our experiences can help one another. lieze

I think maybe that is what this is an adrenaline surge? My serum norepinephrine was 860 and the day they tested that I had about 3 panic attacks. I passed the poor man's tilt my endocrinologist gave me. My gp had ordered a tilt table test and I negotiated to just increase fluids instead since basically the treatment was fluids salt and lifestyle changes. I did not want to go through the tilt table test it sounds like nightmare. I had just gotten through my ablation and I was recovering from that I didn't want to go through any other procedures at the time. I haven't had any of the tachycardia while driving since last summer fall when I was recovering from my ablation. My last doctor visit related to POTS was to my cardiologist at Cleveland Clinic. The endo here wanted to scan me for a pheo due to my high norepinephrine level. I read on line that it was normal to have one with POTS so went to the cardiologist instead who said he didn't think I had a pheo. He is referring me to an endocrinologist there in Cleveland but I haven't gotten my appointment schedule yet. He didn't think there was any hurry. He said I could have POTS but he thought my symptoms were improving. I honestly don't know who to see or what to do. I think I get more information just reading here on this site. I do think I will try to get out daily so it's my normal routine and I get over the panic. Just plan a little outing. When I'm doing it everyday I don't experience such extreme feelings. I was able to go with my husband to a social event about a week ago that was 100 miles away. I had only mild anxiety while there in the social setting not even enough really to take a Xanax. I just didn't know anybody it was all strangers and extremely boring. Thanks everyone for your input.

My doctor checked me for it because I had a week where all of my joints just swelled up out of the blue. My hands and fingers were swollen and I couldn't get my rings off. The bottoms of my feet also hurt and when I stepped out of bed in the morning it hurt so badly to stand on the floor bad enough that I wanted to cry. My test came back negative. It was while we had mold in the house and I went through a variety of symptoms. I think the next week all the swelling went away and I developed a rash all over. It's like it went through one system after another. lieze

I'm nervous to try the Paxil it was my GP that okay'd it when I asked about it. My symptoms were kind of bad at the time and I was desperate and had read online that in some people Paxil works. Well I got the Paxil home and read that it can cause orthostatic hypotension. I already have a problem with this and am so sensitive to things. For instance I've been drinking this Pocari Sweat that has Magnesium in it. I started to feel crappy and took my bp and my systolic is only in the 80's. I'm sure it's from the Magnesium. Duh what do they give women with preeclampsia when pregnant-mag sulfate. I can't believe I didn't make the connection. I got online and researched all antidepressants and looked for ones that raise bp rather than lowering it and found Effexor. Next time I went back I was just honest with her and told her I was too scared to take the Paxil. She told me it should do the opposite in me if I have POTS-well what if I don't? I'm too afraid to even try it. This whole thing is so frightening and traumatizing. I have my kids here screaming that they are hungry and that they want to go to the store to buy toys and I am afraid to even get up and stand on my feet. Weird thing I did get up but took my bp-instead of dropping lower it increased? But I feel really drowsy. I'm trying to drink water to flush this out!

I wonder if it isn't the pill and if you'll be able to tolerate it -but that's all you need is more things to worry about-sorry

I think this is just anxiety! I have done fine around the house these past two days-my daughter is on spring break from preschool so not having to take her to school has been nice but...... Now when I try to leave I go into panic mode, Still trying to seperate the POTS from the panic here. I just get so uncomfortable it isn't even logical. My body is not that stressed to get into a car and drive what is my deal? Has anybody experienced this? I feel like that fish on Nemo that when he gets too excited he blows up. I just feel so much pressure everywhere like I'll just pop or something. It was like an exercise to get out and get my hair cut I made it but boy am I uncomfortable in my own skin!

I was taking 500mg of Vitamin C daily and I think it was helping. This last bottle I bought is horrible. It's so tart it practically triggers my gag reflex. It's all I can do to get through it.

I get that way when I have to be up early in the morning. For a while there I was okay with my morning shift. I did it for about 7 years? Where I had to be up at 5 three days a week and every other weekend. For right now for whatever reason I find if I cannot sleep in it's like I'm shot for the day. Just tired and fatigued. I think my Mom is the same way. She has to sleep in and then she just goes like a mad woman all day long but she needs her sleep. Without it I just have a hangover feeling all day.

Yeah I felt very dizzy but have snapped out of it for the most part or we could say that it comes and goes that would be safe. I feel no dizziness today but it's scary when it takes over. It feels at the time that it will never improve but it does and has. I think mine might be associated with migraine-no pain. If I take a Xanax which is a recommended treatment for vertigo migraine mine improves. I just don't want to take that much Xanax so I try to live with a lot of the symptoms even though it depresses me. Also ibuprofen seems to help much of my symtpoms but I don't want to wear a hole in my stomach so I don't take that everyday either. Also I never felt myself until about a year after I had a baby. I right after felt weak to get up and walk could have been the anemia. I also would get flashed that went through my head that I was going to die. weird. And I would imagine my arms giving out and dropping the baby. This occurred over and over that first several months especially after my first baby. My mom and my husband would do a lot of the walking the baby and burping, I didn't feel I had the strength to do it. But that did improve within a years times. Then just one day I would be usually walking into work and it would hit me that I was back to normal. And I would feel that little skip in my step. Part of mine like I said could have been the anemia?

I had a couple times in the car where I got so tachy I had to call for help and have people come and get my vehicle and take me home. I just couldn't drive that way. I always feel bad when that happens. I am looking forward to the time my oldest can drive. I may let him take over at that point if I am still feeling this way. I hate to put that on myself. Let's just say I am trying to look forward to that day when I can get some help with it and not assign where I will be at that point. I have to take one day at a time right now.