Racer

I got extremely lucky and just happened upon a cardiologist that knew what is going on. Even so, it still took a long time of trial and error till we got everything under control. Then without warning everything has fell apart, I cant take the proper medications, and I am back to fainting.

Current routine, I wake up to a alarm clock (vibrating alarm clock, no noise), then turn on the tv, lay on my stomach for awhile. I then take meds, then switch to sitting in bed with my legs up, then take my blood pressure, then if everything looks good, I peel myself out of bed and take a trial run to the bathroom. Then take more meds, eat 30mins later, bathroom/shower, take standing BP, then off to WORK, usually 30 minutes late on a good day.

Lessons I have learned that work for me... I could ramble on all day about anything I am interested in, but I have found people dont want to listen to me? This is stereotypical for a person with asperger syndrome like myself. I have found people want to share and have a two sided conversation. If I wanted to talk about pots, and I know the person I am talking to has a relatable disorder like diabetes, then I would start off the conversation asking them how they are doing, and lead on to asking them about there diabetes. At some point if I could relate to them about pots problems, and the conversation becomes two sided, then they would be more likely to ask questions and talk and relate to me about pots. To me, the conversation would be much deeper then simply reading each other lines from a text book. It would be more about the experience then the label. People are unwilling to fully learn the level of knowledge that we do, so I think the best we can do is hope they can relate to what we are going threw, and show a little compassion.

Great that everything is normal and healthy! Just want to say, if you feel otherwise and are not happy with your symptoms, be persistent. Doctors only tends to look for the most obvious issues at first. When you are not happy, the more you complain, the deeper they look and the more layers they will peel back.

I guess I have never really fit into the tough guy type. I have always been a bit nerdy, pencil thin arm muscles... the type who was routinely bent into a pretzel and shoved into a locker in school. I compensated by being a good listener, someone who is very open, that you can trust to tell your most personal secrets. I am open with friends, and have had very deep conversations with most of them. I try not to go rambling on about my own problems, but try to relate to them at any opportunity I can. At the end of the day, I guess it all comes down to self image. The type of guy who puts priority in building muscle mass in order to impress others and appear as the alpha male... that is not me and never will be. I proved strength to myself as a elite athlete. When I couldn't compete anymore because of dysautonomia I decided to express myself and the feelings this brought on, threw art. I do understand it, but I guess I just dont get why it so strongly holds guys back. I would love to show up at those events and fit in to the community more, but it just seems like it would be way to awkward (and a bit creepy) if your the only guy!

On all the different facebook pages, blogs, etc... it seems to be 99% ladies? It seems the ladies join together, find support in each other, become friends, advocate, blog... every now and then I see a picture from a conference, with 100 women, and one guy standing off to the side feeling awkward? Maybe someplace out there, two guys with dysautonomia are sitting in a garage working on a car drinking non-alcoholic beers! (okay, maybe that would be awkward also)

They would most likely check you with a pulse oximeter, and probably give you a breathing treatment. I get minor cases of asthma caused by pollen allergy. I dont wheeze, but tend to cough and gasp. Between fits of coughing and gasping, you wouldn't know I am having a attack. The few times I have went to the er for this, I told them what was happening, what I needed, got the breathing treatment, symptoms resolved and I went on my way. Never had a problem getting treatment for this.

I know that when I get spasms and twitches my magnesium is low. If you decide to take magnesium though, talk to a doctor first, since magnesium can affect your heart and gastrointestinal (it is a laxative also!)

For myself, I think severe constipation is a cause, but I cant be to sure yet

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Do you think your bladder issues are related to the constipation? You dont have to answer, just a thought. My constipation got really bad when I was admitted to the hospital for seizures. I lost bladder control at that point and it was attributed to seizure activity. I was told nothing could be done, to just keep managing it with incontinence products and hope seizure meds would help the problem. They didnt know my abdomen was packed full, and ignored my complaints of abdominal pain and constipation. I wasn't aware constipation could affect bladder control. Once I got cleaned out with the miralax my bladder issue has greatly improved. Talk about a roller coaster of emotions, it is so depressing. One extreme to another

Might be a dumb question, did they check your lactic acid while experiencing the burning? While you are relaxing does the burning go away quick or does it stay around for awhile?

A ekg will only take a snapshot of what the heart is doing at that particular time you are doing the test. I have had dozens of them, with various different results from totally normal results, to ones with obvious issues. With the ambulatory ekg you wear the ekg around for 24+ hours while it records, in the hope it catches one of the irregular rhythms. Like if a person is experiencing palpitations daily, then a 24hr ekg might catch a episode, but if they are experiencing them only once a week, it might take wearing the ekg much longer in order to catch a episode. These recoders also have event buttons, that you push if you are experiencing symptoms like palpitations, and this helps the doctor pinpoint what you are experiencing. I am in my late 20's, and although I was born with disabilities, I was diagnosed with dysautonomia and various related issues over the past couple years. If you are 16, is it possible to get on your parents insurance? If that is not possible, you could try your local assistance office.

Is this a common problem for people with dysautonomia? I have had mild constipation problems my whole life, but over the past month my symptoms have got out of control. A xray showed my colon was totally full solid, and the pain was really bad. Nothing was working, so the other day my gi doc had me take a full bottle of miralax all at once and prescribed me linzess to take daily. It worked and I felt soooo much relief. It felt so great at first, but then I developed uncontrollable diarrhea that has not went away yet. I am in so much pain now, way worse then before, and I cant walk to far from the bathroom. I was given a antispasmodic injection, but it did not work to well. I was told to just keep taking the linzess and give it two weeks.

It might help to talk to your cardiologist about the palpitations and maybe getting a 24hr (or longer) ekg. Many types of irregular heart rhythms are very dangerous. Because of my history of long qt intervals and abnormal rhythms, I dont mess around when I experience problems with palpitations, I go to the hospital for a ekg and fluids.

Thank you Katie, Alex, Corina! My doctors figured some things out, and I got some proper treatment today. I feel SOOOOO much better!!! My abdominal pain and nausea got extreme, so I went to the doctor and demanded they run more tests. I got the "your crazy" speech, then he reluctantly sent me for more tests. A abdominal xray showed that my entire colon was full/blocked. I got cleaned out today, and my gastro gave me a ibs med linzess to trial. My nausea seems to be much better controlled now with the zofran. I was a bit disappointed with the gastric empty scan, because I know emptying was delayed during the test, like it normally is, but yet the report said everything was normal? While I should be happy the test was normal, I cant get any further treatment for nausea with the normal results. I was told the liver mass is "most likely" non-cancerous, but they didn't seem so sure. I was told that I should just wait and see if it grows or does anything that would show up on a test. So what happens if it is cancer and it goes out of control while I am waiting? I think it is time to get a second opinion! I am so sick of needing rock solid proof in order to get treatment for my problems

Well, I found a possible cause of my symptoms today. Doctor called, tests show that I have a mass on my liver. Most likely non-cancerous, but It totally blindsided me, totally not what I was expecting! If I have to have this removed, from what I read, the surgery is major. The thought that it might be cancer, even if the odds that it is not. I have been on the verge of a nervous breakdown.

I was thinking they might suggest some sort of feeding tube, but they are unwilling to give anymore help until all test results are back. I dont want a feeding tube, but I am at the point I would really try just about anything to get relief. I had really low body fat to begin with, and now with no fat left, I am simply burning threw muscle mass.

Thanks, I will look into that! The anti-seizure meds I have been on prevent my migraines (I am on the higher seizure dosages), so it is my assumption that they would prevent a abdominal migraine? I am really thinking it is a problem like gastroparesis or a problem with my digestive system not moving food along fast enough. I know things are not flowing correct, since I keep getting really bloated painful crampy lower abdominal.

I dont know anything about chari, but the various anti-nausea meds might help temporary till you figure things out. I was given zofran till we can figure out what is causing my nausea/vomiting.

I got the goosebumps when I was on midodrine, but to be honest, it worked and was way better then fainting so I was totally happy with it! Just be sure that if your ever in a emergency situation that doctors treating you understand what the medicine is for, and what it does to the body. I spent unnecessary time in ICU simply because they didn't know how midodrine affects the body and didn't understand that it was preventing them from stabilizing my vitals. Dont think I will ever be taking the midodrine again as a result.

I had a really disappointing doctors visit. This week I had a gallbladder ultrasound, 24hr EEG (raw scalp!!!), and MRI. GP said there is nothing more they can do currently , that I just have to wait for the nuro and gastro to get test results and make decisions. So the followups are scheduled for a month from now. Absolutely no help or advice other then to wait and ration myself zofran as needed. I have been to the emergency room once, and they just gave me some IV fluids for dehydration and sent me home. How do I know when it is time to go to the hospital? How does a person know when they have become malnourished to the point of needing emergency help?

My understanding is that heart rate increases to keep blood pressure from falling. It is the crash that confirms something like NCS over pots. I blackout sometimes within seconds of changing positions, but it is without the high heart rate increase seen in pots. I think your getting to hung up on wording. They might call NCS a "response" because it have a underlying cause. For instance, my doctor thinks my NCS/orthostatic intolerance is caused by dysautonomia (what has brought me to dinet), so the autonomic nervous system is not functioning properly, and not sending the message to equalize my blood pressure when changing positions. So a person with NCS can have the same underlying cause as a person with pots. It is my assumption that people dont get a dysautonomia diagnoses (or even a TTT) for simply fainting once in there life. For me, I dont care what they call it, or what people might think. What is most important to me is that I get the proper treatment for the correct disorder!

I agree with your doctor (dont shoot me yet, let me explain) I had very similar tilt table results, and the same diagnoses. Since, I have talked to many doctors, cardiologist, and have spent endless hours researching this all. From this, my understanding is that in order to fit the criteria for pots, the blood pressure must not drastically fall. Pots criteria is a raise in hr of X number of beats per minute, that causes symptoms, without the blood pressure crash. NCS and the various other terminology for this, is defined by a crash in blood pressure that is causing the symptoms. When the blood pressure crashes, the heart rate rises in order to try to compensate. Since the pressure is dropping, the heart beats faster to try to get blood to the brain. Once the pressure gets so low, the heart cant maintain the heart rate, so it drops and you faint. Once a person hits that point, if they were to keep the tilt table up, the heart would most likely eventually stop beating. Once you fall to the ground, blood pressure equalizes quickly. In many people who dont totally faint, the body natural mechanisms are working enough to prevent the faint. The tilt table prevents those mechanisms from working, so many people who dont normally faint, might faint for the first time. At the end of the day, my understanding is that NCS or pots can both be caused by dysautonomia. I received the autonomic dysfunction diagnosis because my cardiologist thinks that my NCS is caused by the autonomic nervous system. In many people with NCS, medications that raise the blood pressure, like midodrine or florinef, can prevent symptoms. People with pots benefit from a totally different set of medications, like beta blockers that prevent the high heart rates.

I have talked it over with two different doctors twice. They were worried, so that is what really got me worried! They keep saying they have everything scheduled for as soon as they can, that I just need to wait my turn like everyone else. One roadblock I hit is that there is a nationwide shortage of kinevac, the drug used to test the gallbladder. I am on a "list" and was told to expect a two month wait for the drug to become available. Until then, I have the understanding that since they cant rule out my gallbladder as the cause, they cant be sure about the gastic empty test. I am on both, zofran is the "powerful" antiemetic (anti-nausia/vomiting), and prilosec is the proton pump inhibitor. I have also tried tigan, another antiemetic. looneymom, Hanice I am okay with liquids and shakes. Icecream is maybe 50% of my diet currently lol. I have always had a high metabolism, have always eaten tons of food, high card diet and have always been borderline underweight. One of the problems I seem to be having is trying to get down enough solids, since to much liquids seem to run threw me ultra fast. It seems to be a fine line between super diarrhea or bad blockage with pain (sorry for the TMI/poop talk!!!). Thanks everyone for the replies