lieze

Does anyone else get the sensation that their heart totally stops? I have gotten it probably 4 or 5 times since all of this started and it scares the daylights out of me. It just happened tonight. I was sitting out in the car with my son daydreaming I think and it hit me all of a sudden. It almost feels like getting the wind knocked out of me. It just feels like everything stops. I feel conscious I never get to the point I'm starting to black out. This one came with no building sensation at all. A couple I have gotten come with chest pressure that increases to the point it feels as if it totally wipes out my heart. This one was pretty much out of the blue and scared the daylights out of me. I felt my carotid nothing. Talk about scary. I wiggled around and sure enough it took off again with a strong steady beat. I felt shaky after-in shock. Not knowing what to do. Thinking I probably need a pacemaker defibrillator but then questioning well do I really. I don't actually know what my heart is doing. Maybe my bp is just dropping out on me. Or my vagus nerve is being stimulated. I don't know. When wearing the monitor back this time last year I had several heart pauses that showed up that were several seconds long. My internist had circled them. I think I've only had about 4 since the ablation. It's one of the scariest sensations I get. I have found other people on the internet experiencing the same thing. Not sure what to do at this point. I guess I'll see how often it happens and base it on that. lieze

Jeff I'm very sorry you lost your sister. I did watch the video and thought you did a great job of presenting dysautonomia. I also appreciated the advice you gave regarding having faith and trusting that there is a reason for us being here. I value your advice to keep pushing past the feelings and doing what we can everyday to learn to function in these altered bodies for whatever reason they've been altered who knows. But it's like getting used to your own skin again. It's the approach I'm trying to take is just believing I'm okay and so far it's working. Again my condolences to you and your family. lieze

It's a great idea-it can give you peace of mind if nothing else. I had an extra pathway in my heart called AVNRT I guess 80% of women have this. So my heart was both slowing down and speeding up. I've always been reassured that none of this was life threatening just feels bad but it's best to get it checked out and make sure. With the heart monitor they will let you know if you need to get medical assistance so it gives you peace of mind. I can tell you some of what I have felt wasn't as bad as I feared? And sometimes when I was feeling things nothing showed up at all. So I do hope you are okay. lieze

Thanks ladies I think after getting the chicken pox and how sick this has left me I just have a bad case of hypervigilence. I don't even know any more what to be scared of what not to because I just see everything as a danger. At first it was difficult to go anywhere at all I had such a germ phobia. But I am slowly able to do more without such paranoia. I will say those stupid car carts they have for kids make me angry. They are covered in germs. Why do people take their kids shopping sick anway. Twice now we have went to the supermarket. We try to wipe it down as much as we can with those antibacterial cloths. First time my 3 year ended up with probable strep. Now he's got a stomach virus. Both times it was within 24-48 hours of a visit to the supermarket with that stupid red car cart. I think the next time I'm just taking my can of lysol and giving it a good spraying. If anyone says anything I'll just tell them this is what you call community service! It's so frustrating. But yes I feel fine just hope I can avoid along with the rest of the family this nasty stomach virus. lieze

It's lack of oxygen. I have noticed when I was feeling weaker it wasn't so much my lips that looked blue but my gums looked bluer. You should pink up when you lay down I would think. lieze

I notice I startle awake at times also. I am so fatigued though I usually go right back to sleep. I cannot have a huge interruption of sleep though and get back to sleep. I did not realize that this is due to the adrenaline surge so thanks for that info, It's probably also when I first wake why my heart pounds so hard for that first couple minutes. I have found help just by taking one tylenol. If I am having difficulty getting to sleep one tylenol 325mg takes the edge off for me. You might try that and maybe he'll need 2 since he's twice my size. I do use Xanax as needed the only problem with Xanax or Ativan is they are highly addictive. They will lose their efficacy and he will potentially continue to need higher doses to get the same effect. I do not experience any type of a high on the Xanax only the calming effect and elimination of much of the anxiety and weird sensations that I feel -for that reason it is wonderful. Hmm I wonder how Benadryl would work for him? It might be worth a try or to ask your physician if it would be safe for him. I would think it could work as it has a sedative effect. lieze

Brittany Murphy's cause of death has been released. AP file photo If you like this ... Actress Brittany Murphy has died Could Brittany Murphy's death be prescription drug related? View all ? According to multiple media outlets, sources are reporting that the L.A. County Coroner's office has released the cause of death for actress Brittany Murphy. It is listed as "community acquired pneumonia, iron deficiency anemia and multiple drug intoxication". The 32 year old actress went into cardiac arrest at her home on December 20th of last year. There had been speculation that her death was related to drug use as well as anorexia.TMZ reports that multiple sources say her condition was"preventable". The L.A. County Coroner also believes her condition was treatable but she did not receive the proper medical care in time. The main cause of her death was her pneumonia and severe anemia, with the multiple drugs found in her system "pushing her over the edge". The drugs found in her system include prescription as well as over-the-counter medications. One of the prescription drugs found were pre-menstrual medication for cramps, as well as over-the-counter cough syrup.

I'm not sure whether I'm going for further testing because my symptoms started right after chicken pox so I'm pretty sure it was the virus that caused it. If I seemed to be getting worse I would but I seem to be very stable and just have good days and bad days. I am just looking to recondition at this point. I understand the mixed feelings about it. I hope that you can find the help you need and get some reassurance. This site is a god send with so many knowledgeable. I would encourage you to hang out here until you get more answers. lieze

The poor dear. I'm just really sorry that happened to her. lieze

I am so paranoid here it isn't funny! One day at the bank after I had touched the little container you put your check in to send through the shoot I accidentally put my thumb in my mouth. I was ready to swallow hand sanitizer I had such a freak out. I came home and automatically looked up swine flu and counted the days down waiting to see if I would come down with it or not. Well I was fine. Nothing happened. Tonight- I was sitting here eating chicken soup. All of a sudden I felt my throat clamp shut on me. And I felt the warm soup run down the inside of my torso. Well I automatically thought I aspirated the soup. I didn't really even choke or cough. Just sat there. I couldn't really even eat any more I was so freaked out. I did take a couple more bites just to check that my swallow was working and it worked just fine. So I am trying to tell myself that once again I am overreacting. Fearing the worse. I have become so obsessive and paranoid that it is just crazy. My lungs feel fine I can take nice deep breaths and I don't feel gaggy or choky or anything. But I still keep questioning which pipe did that go down. lieze

I agree with Carinara, Please remember that the flu and pneumonia claim many lives every year. We tend to forget this but you can find the statistics online if you search. Also it is a possibility she even had meningitis related to the pneumonia. On one of my ER trips the rooms were all full and I ended up in a waiting room. They brought in a big burly guy that apparently had been sitting at the table with his mom and just keeled over. He was moaning and seemed pretty out of it but they had taken him for a CT of the head I think. I had heard them saying he still had the pneumonia so for whatever reason he was not getting over it and it seemed as if somehow that infection was playing other havoc in his body and perhaps had even gone to his central nervous system. They had life flighted him out of there saying there was one chance for him and they were going to try it. I couldn't help but notice how thin Brittany was in all her photos and maybe it wasn't anorexia and was more related to the dysautonomia it's hard to tell. I can tell you from working in the nursing home that people have what they refer to as a reserve in our guts that give us strength and help fight off infection. They can do an actual lab test that shows what the levels are if anyone can think of what it's called please help me remember I'm sure I will here in a minute and can edit this post. They actually when a person gets very thin will do a lab test.(I think it's the serum albumin level) Below a certain level they do get the diagnosis failure to thrive. With almost any infection it will take their life. They are unable to fight it off just from a weakness so I'm not sure if this was a problem for her but I'm sure that it could be for someone with anorexia too. And I'm not sure that Brittany was anorexic maybe her thinness was more related to a problem with dysautonomia. Anyway there are more factors to consider here I believe than just POTS that contributed to her death. lieze

I kind of get what he's saying but not sure he said it right. My mom's doctor explained something similar to her regarding her diabetes. I guess what happens is these are all normal processes our body tells us to eat when our blood sugar gets low. To sit down before we fall down when our bp drops? I guess the longer you go along with a disease process? if that is the right word your brain can start to send out false messages. In other words my mom's brain is sent out the message to eat your sugar is getting low at a different set point now after so many years of being diabetic so it is a false message she is getting. She was able to confirm that what he was saying was true. The problem is how do we know when a message is false and when we should listen to that message. I have gotten the message before now when I am fine. For example felt depleted of oxygen but had the equipment right there took my pulse ox and it was 100% as soon as I saw that number I felt instant relief and actually started feeling okay right away. I used the feedback system also when I wore my heart monitor I loved being able to keep tabs on my heart rate. If I felt symptomatic but my heart rate was only 90 I realized I was okay I had a way to go yet. But if I was increasing jumping up to 110 on up then I would slow down. I am realizing I have no idea what my heart is doing until I take the actual pulse. Also the bp there have been times I have felt like absolute crap granted I don't have an actual reading from the moment that started but when I take my vitals I am fine. Also when hooked up to equipment in ER I would feel the wave go through with no change in vitals many times. So in my case it seems my body is sending false messages. My problem is I don't know when to listen. The instant I know I'm okay I start to feel okay. Also taking a Xanax tends to relieve many of those sensations which makes me think that's all they are to begin with are weird bodily sensations. Now I have to admit at the same time I am no where ready to go run a marathon, or do anything very strenuous. I get nervous looking at a flight of stairs or taking a trip to Walmart. But I do see that there is something going on here I just can't figure it out. I'm not sure if what that doctor is referring to or not though-sorry. lieze

Maybe it will just take a little time to recover from all the extra fluid from the pregnancy. With my first baby my legs had swollen up pretty big and it just took a while maybe a week or so for all of that fluid to get eliminated. lieze

Oh it sounds like you are dealing with a lot there. More time to recover and heal. I do hope everything works itself out. lieze

I'm sorry Maxine, One day at a time. lieze

I felt great on the Atenolol. It just scared me cause it felt like my bp was bottoming out on me. As far as calming me I preferred it to Xanax. lieze

Thanks so much for sharing your story. I'm going to try the Gatorade. lieze

Can you share a bit of info?

Yeah for a baby girl! I'm so glad for the uneventful delivery and that you are okay! I would think you need to take the stool softener especially the colace. I don't think it will aggravate your POTS actually being constipated might aggravate it more. The only thing I did not like was Senokot. My doctor gave me this after my last baby and I was awake all night with horrible chest pain. It was most likely a heartburn effect but it was so bad I could not sleep at all. The Colace should work fine though. lieze

Ami, I am so sorry that this happened. lieze

I seem so vulnerable to any lack of sleep and just seem unable to function today. (When I get up I just feel my blood pressure drop in the way of weakness. I have taken it twice and sitting down I'm right around 100/73 and 99/56 and 100/55 not bad for me) I worked last night 3-11 so I was up late, then of course we have our 6 am bus routine here. I did not get up right away but was awake I guess since about 5? Oh that's awful. No wonder I feel so bad. But anyway do you notice this hits you too? I'm 3 shades of pale. If I try to lay down to rest I feel too awake. If I get up I feel too tired to function. Slightly irritable from lack of sleep. How do you cope? Also won't try it today but what about caffeine? I was warned against it with my tachycardia but I did read it can help stabilize blood pressure. I tried just a very little at work last night and it helped my alertness I had felt really zoned out before I drank it and was attempting with caution to self medicate.

I know somewhat how you feel about that Catlady, It wasn't that being an LPN in a nursing home was that glorious of a job but the income was really good especially for a second income. My husband is the main wage earner in our home. That income gave me a backbone. It gave me security that we would be okay. I walked into Kmart Saturday and I could have just cried. My check wasn't even enough this past week to cover my car payment and just walking into a store made me face the fact of how financially vulnerable I am. The kids were asking for all kinds of extras too and I just had to say Mommy doesn't have any money. Then of all things I took the boys to a movie after. I had not been to a movie in probably 5 years. I spent $26.50 to get us in and then $19.00 on 3 small drinks and one box of M&M's. Money that I do not have. I felt so guilty the entire time. I was lucky enough to get called into work last night but guess what I walked into My coworker who worked opposite of me the entire time I worked full time still works there part time. She had a brace of her left wrist. When we were done with report I asked her if she had fallen on the ice. She said no one of the residents got a hold of her and pulled the tendons right out of her elbow. She cannot use her left arm at all and is on Workman's comp. Now I know I maybe paranoid since I also got chicken pox there that led to my POTS, but it's like is this job really worth it. You literally are putting your health and well being on the line here. Yeah the pay is good but is it worth it? I probably will continue to work now and then there but I don't want to go back to what I was doing if I can help it!!! lieze

Wow, I think I'll start hitting the Gatorade! lieze

Thanks so much for that information Julie. It helps explain why Dr. Grubb stated Frank will be needing to take the Paxil for quite some time. lieze

My cardiac ablation was quite stressful as any of the members here who have had one could tell you. Adrenaline ended up being the means to induce me into afibb I was going at over 200 beats per minute I think it was something like 240 and they were getting ready to put me to sleep to convert me when I converted on my own. Very scary. Next they may have done the mapping. Next the actual ablation those two parts were not bad. Next comes the uncomfortable part. They try to trigger you again. They were pumping me full of adrenaline and after about 10 minutes of it I was begging them to quit it was so uncomfortable. Well little did I know they do this for 30 minutes to make sure they fixed the problem. I was in misery. Finally the 30 minutes had passed. You are awake for the whole cardiac ablation and I was lucky mine only lasted 6 hours that I was laying there on that table. So at the end the nurse gets so excited practically jumping up and down and says-Wow you are in such great physical health! Your blood pressure only got up to 120/70 that entire time. She said with what you have just been through we expect to see bp's all over the map but you hung in there like a trooper. I was in la la land not from any of the drugs they had given me but just overall weakness and fatigue and just feeling I couldn't take another moment and was just thankful it was all over. Her words did not do much to comfort me at that point. What I am finding though is I think that the sensations that I get are very overblown and that much of what they are just exaggerated. I still fear steps and normal activity. The thought of trying to make it through Walmart right now sends me into deep concern but I think I need to try to stay positive and work with my body. Not let the feelings overwhelm me. I had mentioned in another post so many times when I'd feel like crap and take my bp I'd get 92/50 and think what? How can I feel so bad but my body seems to be functioning just fine? I don't really understand it and while I am still experiencing the panic and anxiety I won't deny that I am also trying to work to build my own confidence back up. lieze