Godsgal

I expect some inaccuracy, but my golly, 240 & 186!!!! That worries me! That's why I was wondering if it was SVT or a watch error...

One more thing! My heart rate seems to fluctuate even while sitting. 60's, 80's, 70's, 90's all while sitting. All in the same time. I wore a holter for 10 days four weeks ago and there were no rhythm problems...just high heart rate.

Okay...I think I might go nuts. This stupid sportline watch I have is driving me crazy and I'm worried. It has told me several times today that my heart rate was 240 and 186. Both times, when I had the watch recheck my pulse, my heart rate was in the 70's. What gives???? I don't feel anything differently except anxious when I see the number. I have been having more difficulty breathing episodes while resting. Is this SVT or a watch error???

Hi Dixie, It seems like there is no rhyme or reason to my flare ups. Sometimes when I do too much around the house or perhaps eat something that doesn't agree with me. I haven't quite figured this condition out yet. I stay home all day too and it's very hard to deal with this. It's difficult for me to get out and go anywhere because of my symptoms. I think we all struggle with panic and anxiety in some form or another, some of us more or less than others. I try to stay as calm as possible and rest through my episodes. I recently read that drinking 16 oz. of water rapidly will bring a high heart rate down. I wish I could give more advice than this. My faith is what gets me through the terrible moments you describe. Just hang in there and take comfort in the good moments when you feel well. Jared

I had a lung funtion test and 2 chest x-rays done, all with normal results in December so I'm hoping it wouldn't be anything more serious.

Hello dinet support group, I am getting these labored breathing episodes and they are terrible. I feel like it's hard to take a breath, like it's labored. I'm just sitting here and they normally last for a couple of hours. I feel like I'm not getting enough oxygen. It's usually in the afternoon/evening and it's brought on by physical activity like walking to the pantry for a snack too many times or excessive talking (believe it or not!). Reading a book to my 3 year old will bring it on too. I've been diagnosed with POTS and dysautonomia. I suspect MCAD as well. They are still looking into what else is going on with me. My blood pressure is usually around 130/100 (high for me) and heart rate seems to jump around during these episodes but is usually lower like in the 50's to 70's. It's like I can feel my heart start slowing down during that time and my bp usually goes up. Not being able to breathe correctly is just torturous. Does anyone else get this?? Is this a POTS issue or a dysautonomia thing?

Hi...I have no clue what type of POTS I have. No one has ever told me. I got the serum tryptase level checked and mine was normal. I have so many of the symptoms of MCAD I was shocked. Not sure if there is another way to check me out in that way. I'm taking Toperol, Celexa, Midodrine, and Fludrocortisone.

I have a Sportline watch just a few weeks old and it seems to work correctly most of the time. I have noticed some strange readings and was curious if anyone else had problems with their pulse rate watches. Today I was out and my heart rate was jumping around from 70's to 110's to 60's to 90's and I was just sitting in my wheelchair. I wasn't feeling well and tried to ignore it. The watch then showed me my heart rate was 180. I took my bp and it was 130/105 (which is high for me). I usually run 100 to 120 over 60-85. I got this all over hot pins and needles type feeling almost like I had a surge of adrenaline from the anxiety I felt when I saw 180. Later, I saw 180 again on it and my heart didn't seem to be going very fast. Questions: So has anyone experienced their heart rate watches having problems? And my heart rate has been in the 150's before and my heart felt like it was racing and very uncomfortable. I'm wondering if it could be 180 and me not feel like it was going that fast. Does anyone get the all over hot pins/needles rush type feeling when they get nervous all of a sudden? THANKS for responding!

Hello, I am a newbie too with dysautonomia with all my symptoms starting 4 weeks ago. I was unable to even sit up or walk to the bathroom by myself before I started taking Midodrine. I'm so thankful for this medicine. Now I'm able to do very short walks around the house. I still need a wheelchair if I go out anywhere. Thanks for asking these questions. Hopefully I can learn from this too.

Sometimes I get a similar feeling but it seems like it's from the Midodrine. Do you take that?

Hi Alicia, I get muscle twitching and shaky when I try to do physical things like walking too much, going down stairs, or typing too much sometimes. I have been more sensitive to scents lately also. But I get the flushing, hot flash episodes, and it makes my lungs burn. I guess everybody reacts differently to what bothers them.

I got some graduated compressions and had them on for 48 hours straight. When I took them off, I had a ridge in my muscle. I haven't had them on for 2 weeks and it's still there. Doctors aren't quite sure what that is about.

Wow...I totally know what this is like. For a long time my stomach was so distended I looked 4 months pregnant! And you're right. It can be SO painful. At it's worst, I'm stuck in bed and unable to move. The massaging did help me along with over the counter medicines for gas. I battled with this for a year and a half until I finally figured out what was causing it for me. It was dairy! Maybe you are allergic or intolerant of something you are eating. Dairy is a very common offender. And many, many adults are lactose intolerant and don't even know it. I have always been able to eat dairy until I had my first son. After that, my body didn't digest it anymore. Wheat, soy, eggs, and shellfish are other common things a person could be intolerant or allergic to. Try an elimination diet and slowly add back things and see how you do. Some people do a food journal. It takes a lot of discipline but would be well worth the findings.

I too want to homeschool my children and a good homeschooling friend of mine always encourages me to take my time and give myself and my kids a break during difficult times and pick back up when things get easier. That is the beauty of homeschooling. I've learned with my son that the more fun I make it, the more interested he is. And the more pressure I put on him during moments he is uninterested or not in a good mood, the more frustrated we both become and he's not learning anything. My son is 3 1/2 and he has learned all letters, shapes, sounds of letters, and reading words from a great site called starfall.com It is an incredible, educational, fun website that kids love and it's a great tool to teach your child in the home. I can't say enough good things about it.

I have been out of that house now for a little over a month. I started getting burning skin episodes (like hot flashes) while I was there and the near fainting episodes. Two days out of the house is when I was hospitalized the first time and I haven't been better since. Family was driving me through the everglades and I decided to turn around because my condition is so confusing and I was afraid of being an hour away from help in the middle of a swamp with my blood pressure all over the place. Plus I was getting hot and cold, back and forth. Miserable. I wouldn't have turned around had I not been in the middle of nowhere. Nobody told me it was dangerous to have bp at 140/98 but my cardiologist's assistant told me it was dangerous for it to go up and down by so many points (from 85/68). It's frustrating ya know???? I'm so new to this I don't know what to do when this stuff happens to me. Nobody really explains this stinking condition to me and I have to wonder about the symptoms. It's terrifying to suddenly be living with a wheelchair at 29 and top doctors tell you something is attacking your autonomic nervous system. I'm beginning to realize that this is a miserable condition that you have to live and suffer with at home. It's very challenging. And my mother in law doesn't understand it and tells my husband I need a psychiatrist. That doesn't help either. But I absolutely LOVE this site and the incredible support everyone provides me. I love knowing no one is going to judge me and tell me I need a shrink!

Did your symptoms get better when you were out of the mold? I've been out a little over a month and I feel like I'm getting worse!

Saw a top Neurologist in the area yesterday. No MRI's, CT scans, blood work done so far is showing what's wrong with me. I have POTS, blood pressure swings, high heart rate, burning skin, breathing difficulties, circulation problems, body temp fluctuations, shaky hands, muscles twitches, vision changes, can't do physical activity, hives, large sudden lump/tumor in leg. It came on very acutely. He thinks something is attacking my autonomic nervous system. Maybe a virus, genetic issue, or the mold that I was living in is causing it. Anybody have ANY experience with this??? I tried to go see a POTS specialist this morning and my blood pressure in the car went from 85/68 to 140/98 in 10 minutes. I had to come back. I was pretty nervous. Would that have triggered the change???? I think I may have MCAD also. ANY THOUGHTS FROM ANYONE WOULD BE APPRECIATED. I feel like I'm dying over here! I'm only 29 and have 2 young ones 3 and under.

Hi....I'm a 29 year old mom with a 9 month old and a 3 year old. 4 weeks ago my whole life changed. I went from being active, exercising, taking care of my kids, to not being able to walk around much more than to the bathroom. I have been to the hospital 6 times in the past month due to fainting, bp drops, high heart rates, etc. I need advice, understanding, and similar stories so I don't feel alone and can get help. For years I would randomly get black tunnel vision with a quick change in position but it would go away in a few seconds and I would chalk it up to my low blood pressure. I would also feel faint at times and I would rest and take fluids and the feeling would dissipate. I'm petite and my bp usually runs in the 90's over 60's. I moved to Broward county, Florida a few months ago into a house that had toxic mold. We realized it after a couple months and it was tested/confirmed with toxic mold. 2 days after I moved from that house I went nearly unconscious while shopping with my boys. I had about 4 hours of dystonia in the hospital....I couldn't talk right, or control my arms, legs, or tongue. I had tons of testing done and was sent home after 5 days telling me I had neurocardiogenic syncope. 2 EEG's were normal. Scheduled for a video EEG. I have not felt the same since. When I got home, I realized that I couldn't do any form of physical activity. Nothing. If I did, my heart would pound and race and I would get shortness of breath. I thought that quite strange and scared me half to death. I got a cardiologist and insisted I wasn't nuts and that something was wrong with me. He ordered a 10 day heart monitor for me which showed my heart rate going up to the 140's and 150's out of nowhere. He had never heard of POTS until 3 days before and thought I may have it. He sent me from his office to be admitted to the hospital because I could barely walk when I was there and I was passing out in the office. An EP confirmed the POTS diagnosis after the second tilt table test. Since then I have had different days, different symptoms. At one point, I was unable to sit up at all. The midodrine has helped with sitting up. Now I'm on Celexa, Toprol, Midodrine, and Fiournef (wrong spelling). At this point, I can't walk or stand much at all. Walking to the bathroom is the extent of what I can do. I get shortness of breath, like a heaviness in my chest, if I walk around my house too much. It lasts for about 15 minutes after I have stopped the activity. I need a wheelchair to go anywhere if I even feel like going. I wake up suddenly out of sound sleep with my heart racing. I get burning skin episodes like hot flashes without the profuse sweating. My vision has changed....light coming in through the blinds looks strange, makes me feel disoriented. Looking at the pond in my backyard and the way the water moves makes me feel strange also. I get shaky if I do too much walking around or standing up. No blood sugar issues. I suspect I have MCAD after some research on here b/c I have had hives, sometimes daily for years and years. I wore compressions for 2 days straight and when I took them off I found a giant ridge/lump in my muscle. My PCP thinks it's a giant fatty tumor (lipoma). Tested negative for a blood clot. ANY HELP, ADVICE, SUGGESTIONS, SIMILAR EXPERIENCES, would be VERY APPRECIATED. THANK YOU