sstephan

You are not bonkers!!!! My heartrate is all over the place. My co-workers have seen me through many "attacks" and we actually laugh about it. They make jokes about my heartrate suddenly going to 180 for no reason at all. It really helps to put things in perspective and they are so understanding. Enjoy the low heart rate! When my heart rate is low, I will try to go to the gym. Is your blood pressure low too?

Hi, Just wondering if anyone else experiences this. It is that time of the month, and I am in the midst of a flare up. Sometimes I have problems driving. I have actually called an ambulance while sitting in the left turn lane before. Things have been under control until this past week. I was driving on the freeway when suddenly the back of my head felt so heavy. Things started to spin and I was scared I was going to black out. It was a sensation that I have never felt before. It only lasted about a minute. Has this happened to anyone else? It was so unlike other times I have felt like fainting.

Thank you for inquiring about my daughter Abby. The appt was okay. Dr. Davis was nice enough- just difficult to understand. Does anyone know anything about childhood dysautonomia? He did not feel as though Abby is suffering from dysautonomia. My ped doc had told me that children can have autonomic problems without actually have familial dysautonomia. However, Dr. Davis said this is not the case. He thinks that my daughter has patent foramen ovale- where a flap has not properly closed in her heart which allows shunting of blood. He said this would not have shown in her echo because it only happens when she is active. We are going to go see a ped cardiologist to see if he agrees. I am not sure what I think. The only good thing is that if Dr. Davis turns out be correct, they really don't do anything for it. I guess it usually closes up on it's own. I was wondering if anyone has children who also suffer from dysautonomia. Is it common to inherit POTS? My father has a very mild case of POTS. Any information anyone could offer would be much appreciated.

Hi, My doctor is pretty sure that my 18 mo. old daughter is suffering with symptoms of dysautonomia as well. We have an appointment tomorrow with Dr. Todd Davis at Children's Memorial Hospital. He is listed on this website and I was just wondering if anyone else had ever seen him. Her referral was approved for consult only and I get very frustrated with the insurance. My autonomic doc is out of network and I am still fighting with the insurance company for the testing to be paid for. It is such an ordeal. Thank you, Susan

Hi I certainly know what you are talking about. It just amazes me that one day I can feel perfectly normal and forget about my illness. Then BAM it's all back again. What I really hate is the brain fog feeling. I am a teacher and sometimes I just feel so out of it. People will ask me what is wrong and I do not know how to respond. I just know that I will not be very productive on the days I feel like this. We are lucky to have this forum. Susan

Hi, I took Wellbutrin at one point to help wean off of Paxil. My experience was fine although I was on it for a short while. I lost about fifteen pounds during the duration of the treatment which my doctor said is a side effect of the pill. This could be taken as a positive! Susan

Hi Julie, Boy do I know where you are coming from. It is a terrible terrible feeling to feel pushed aside by doctors. I once got to the point that I never told them what was really going on with me because I was tired of just being pushed aside and told that I have an anxiety problem due to being a new mother with "hormonal changes." When I think about it, it makes me so angry. I, too, "look well" and "put together" as one doctor told me. For some reason, I can never tell the doctors how bad I really feel and always put on a "it's not so bad" front when I was ready to collapse only a few minutes earlier. I don't know why I do that. I also have terrible reactions to dental work and I have a lot of tooth decay. I am looking for a new dentist as mine does not understand dysautonomia whatsoever. He lowers my head so low that I can't tolerate it. When I tell him I need to come up, he responds in a minute and I tell him I mean NOW not in a minute. Very frustrating. However, reading the posts on DINET makes me aware that I am not alone and others experience the same frustrations. It is not a life threatening illness, just life alterating and very difficult for others to understand. Please hang in there and know that you are not alone no matter how low the doctors make you feel. Susan

I know exactly how you are feeling. It is SO frustating not knowing who to call! Who understands your dysautonomia the best and who prescribes the Midodrine? I would call them first. The cardiologist tends to be the most understanding for me. My PCD still doesn't really understand my problem. I would call someone just to make sure it is the dysautonomia causing the problems. Chances are, it is but maybe they can suggest something else or send you to the hospital for an IV bag. Take Care Susan

This happens to me too. When I was younger, before I knew what was wrong, I often used to wonder why drinking would just put me to sleep literally even if I was at a crowded noisy bar.

I have a one and a half year old daughter who is also going through some health issues (possible early signs of dysautonomia) I know how hard it is to watch your child go through something like that. I will pary for your son. My friend's child was recently diagnosed with a heart defect and will have to have surgery later on in life too. Is it an atrial sept defect or a hole? They can now do some of the surgeries through catherization rather than an incision. My best to you and your family.

I am sorry for the dumb question but what is a bolus of food?

I went through a period of time where that would happen every night. It would ususally happen between the hours of eleven and two. I actually tried to stay up every night until two to avoid the episodes because they really scare me. I also shake when they happen but don't know if that is just from anxiety. Sending positive thoughts your way

Hi I live on the near Northwest side of Chicago and would be interested in a get together. Please keep me posted! Susan

Hi I was wondering if anyone else has experienced anything like this. i have many abdominal/GI issues and recently began to feel a pulsating sensation under my rib cage on the right side. It sort of feels like when I was pregnant and would feel the baby kick. I can actually see it sometimes. Had an ultrasound which only showed a small kidney stone. Could this sensation be related to dysautnomia?

Hi Amber, I am so glad I have found this forum! I do not feel like a nutcase when I am writing on this forum. So many of you have had experiences that mirror mine! I used to be a fitness instructor which is when this all began. I too try to work out but always find myself feeling much worse after. I had a baby a year and a half ago. I weigh less now than I ever did and now I am not really working out. I would attribute this weight loss to losing muscle tone although my clothes fit nicely though. At least something positive comes from this! Take care

Hi, Jacquie wondering how your ultrasound went. I got the results of mine and the doctor said it revealed a small kidney stone. However, he said that the size and location would not cause the type of pain I have been having. This doesn't really make sense to me. My pain attacks fit kidney stones to a T. They are sudden, intense, start in the back, come in waves, and last about twenty minutes. I also have kidney stones in my family. Not really sure how to go about this now. Do the rest of you have pains like this? Should I pursue this kidney stone thing further?

Hi, Boy can I relate. What is wrong with some of these doctors? Young females who look healthy are always dismissed as anxiety cases. I too had several ultrasounds which did not show gallstones. My friend's mother was experiencing the same attacks I had and she told me to ask for a HIDA scan. I also had to beg for the test but it turned out that my ejection fraction was somewhere around twenty percent. I had my gallbladder out last July and the pathology report stated that it was severely diseased. Just a note of FYI- I had a tremendous amount of shoulder pain after the operation. It was due to the gas they use during the procedure, however, I would have liked to know this ahead of time. Just remember it does go away and it is perfectly normal. Best of luck to you.

How strange to read your posts. I too have very severe ab pain on the right side and back. It worsened after I had my gallbladder removed last July. The pain attacks are very very severe and I also have had numerous CT's, MRI's, Gi series, etc/ My GP is not sure what the problem is and does not think it is related to dysautonomia. He orderd an abdominal ultrasound on Saturday due to the fact that now I have a pulsating feeling in my upper right quadrant. The woman who did the ultrasound kept looking at the right kidney so I do wonder if I have kidney stones or something. This is just so odd that others have this pain too.

You have a wonderful attitude and sense of humor. I believe that is what keeps us all going day after day. Prayers to you.

Hi, Though I have had this illness for a long time, I am new to the diagnosis and still learning about it. I guess my question is- what is the prognosis for dysautonomia? Do most people get worse? Has anyone ever died from this? I was told it is not a "life threatening disease" but rather a "life altering disease". I guess what really scares me is when my heart is racing and I have palp after palp, I'm dizzy, nauseated etc etc - This is not taxing to the body? I try to tell myself when it is happening that it is normal for us and my heart is not just going to stop beating. But I can't help but wonder how the heart takes all of this on. Can anyone offer any insights on this? Does anyone else think about this? Thank you so much. Susan

hi Welcome Elle. I am new to the forum as well. That is a question I wish I knew too. I currently teach full time. Some days are better than others. Luckily, my boss is supportive. He is used to me coming into the office all shaky and tachy and just waiting for it to pass to go back to my classroom. He just asks that I not let the kids see me like that. I have been scared that he will ask me to take a medical leave. RIght now I am not that bad but have had very bad times too. I wish that someone was able to tell me the prognosis for this illness but I guess it varies from person to person. Take Care, Susan

Hi, When I was going through a very difficult POTS time about a year ago, I used to wake up in the middle of the night so severly nauseated and my heart would be racing. I would get the shakes and then wake my husband up to stay with me. He doen't wake up easily, and I would really be scared if I couldn't wake him up. I know how scary this is....I remember just staying up past midnight because I was scared to go to sleep. They ususally happened around twelve or one, so I thought that maybe if I stayed up late it wouldn't happen. God I do not want to relive those times. However, it got better for me and I know it will for you too. I guess it just seems as though this illness goes through good patches and rough patches. I just tell myself that I am not going to die and I try to slow my heart through deep breathing and the vasalva (sp?) Manuever. Hang in there, Susan

I have been reading several posts that use the phrase autonomic neuropathy. What exactly is this?

Thank you Amy for your reply. I noticed that your bio stated you had pregnancy induced dysatuonomia. My problems started before I was pregnant, however, they were really bad during my first and second trimester. I was taken to the hospital several times and always rushed into labor and delivery. Very frustrating because I knew I was not in early labor! I did not breastfeed, as I was advised not to because of all my medications. I can exercise sometimes depending upon the day. I can't do nearly what I used to do- I used to be a fitness instructor. That's when I first started passing out. I just recently found out during an episode that my blood sugars are running around the 170's which I know is just elevated. Dr. Gilden is running some bloodwork that I am waiting for the results. I don't really know what the blood sugar levels mean. My grandmother had diabetes but not until she was much older. I eat a fairly good diet, although I do have a weakness for chocolate chip cookies!! I can't say that I never eat anything from a box though.... Thank you for sharing your advice. I really appreciate it. Hope you are feeling well! Susan

Hi, I am new to this forum but just wanted to post that I feel very lucky to have found this place on the internet. I cannot believe what I read on the posts because I can relate to so much of it! There were times when I would wake up so nauseated, shaking, tachy, faint, etc etc and wonder what in the world was wrong with me. I left so many doctor offices in tears after being told that I needed to see a psychiatrist and was asked question after question about my "home life" and "stresses at work". It was an awful feeling and I began to question if I was just imagining the problems. I was afraid to tell my doctor about all of the new symptoms I was experiencing because he already thought I was a freak. There are some things I just don't understand though. I was first diagnosed with snycope from a cardiologist when I was 18 due to passing out when I would work out. (and several positive tilts) I was put on a beta blocker. Things got better and they took me off the meds saying I grew out of it. NO problems until two years ago and bam! everything spiraled from there. I began having problems with many systems in my body. Why couldn't anyone see the relationship between the systems? The GI doc, neurologist, cardiologist, and rhemetologist (sp?) would only focus on "their system". I knew that somehow this must all be related. It was finally my internist who said that the autonomic nervous system could maybe be responsible for this. My cardio actually told me that the GI system is not involved in POTS and that anxiety can manifest itself in "stomach aches and pains" as he called it. Thankfully, I found Dr. Gilden at St, Mary's who specializes in autonomic dysfunction. I have only seen her a few times and so far she is working on trying to figure out if there are any underlying factors causing this. She is looking at blood sugars as they are high and trying to see if there is a link. I just don't understand why this illness is not understood. Why is it that an emergency room doctor cannot understand this? If I ever go to the ER for a bad attack, I end up waiting for hours for them to just discharge me home and told to "go take some Paxil. This is not an acute emergency- it is a chronic problem and you need to see a specialist- duh!" What I don't understand is that I can feel just fine for a period of time and then bam! out of the blue symptoms hit again. I may feel badly for a week or so and then get back to normal for a little while. When I am not sick, I think about the illness and think this really isn't so bad. But then I get sick again and things turn around on me. I function okay and do hold down a full time teaching position. However, is there a progression to this illness? I have noticed that now things get black and fuzzy almost everytime I stand up from a kneeling position. (i teach little kids) Also, during a really bad tachy episode I have to stay calm and tell myself that this too will pass. I guess my question is- has anyone actually passed away due to an autonomic episode? Does the heart always right itself when this happens? This is what scares me the most. And the severe stomach/back pain that I experience. Will this disease progress? And why can't doctors answer these questions? I just don't understand it and it is very difficult to explain to others. I have seen others mention autonomic crashes. Do you have periods of time when you feel okay and periods of time when you are really sick? What precipitates this? I know summer is hard for me and lack of sleep can figure into it. Thank you for listening. I cannot believe that there are other people who are experiencing this! I just keep thinking about something my mom told me when I was a little girl- God never gives you more than you can handle. (well he must think we can all handle quite a bit!!) Susan