HangingByAThread

SonM: Yes, being a parent is very demanding. Luckily my children are getting older and don't need me as much. You asked how long my commute to work is. It is about an hour (I don't work very far from home but I live in a big city and it takes forever with all the congestion). I used to get sick so much when I took the express train because it was like a human sardine can and I'd have to hold onto the pole (I find holding my arm(s) for a period of time makes my situation worse). My children and husband have only known city living so they don't really grasp how hard it would be to have a home out in the suburbs (all the extra commuting plus mowing the lawn, doing all those additional chores) but they don't bring it up much. Sometimes I really resent having to hide my condition but I think people get tired of hearing about it. I feel like if you have cancer or something like MS, people are very understanding but when you look normal and have a condition nobody has heard of, they really don't believe you. People don't grasp the idea that it makes me sick to wait on a line (I guess if my husband as the one that had this issues, I wouldn't understand either). One day one of my kids even said to me "you always feel sick, when are you not sick" in response to me yelling at them for horsing and not going to bed when I wasn't feeling well. Before that I never really thought about how this must make my kids feel. I'm sort of toying with the idea now of taking the entire family to a therapist for a couple of sessions to address this. One positive thing I did recently is that I purchased a big key chain off of Etsy that says Medic Alert - Dysautonomia (it actually came from England). In addition to the medic alert bracelet I wear, I hang this from my purse. I find that if I need to ask someone for a seat or if I'm taking a while to get off the train (after sitting a while, I must stand up for about 10 seconds before I start walking out of the train and up the stairs) people don't give me a hard time. I also notice that when the train is crowded and people are nearly on top of each other and I whip out my cold water bottle or ice pack to put on my neck, people do give me a bit more space. I am a little embarrassed at times but I think if I have an episode I will get more help and sympathy. (I once had an episode of bad, prolonged tachycardia on the bus about 2 years ago and as luck would have it, the bus was approaching a hospital and then stopped in front at a red light. I asked the driver to let me out because I was having an issue with my heart and he refused and accused me of faking. He kept on driving and then at that point I was unable to stand up or walk out. Blocks away he finally pulled over and called me an ambulance. Have you ever tried taking anything for the brain fog? I chose not to but Vanderbilt in Tennessee was willing to prescribe something to me (they actually offered, I didn't even have to press them). I find that my brain fog has improved with salt tablets but it is still there. I get a bit forgetful (people write it off as being a bit "ditzy" at times) but I can pretty much function at work.

Yes! Before I knew I was hyperadrenergic I had such horrible insomnia each night. I was too tired to do anything but too wired to sleep. I'd lie in bed but then the tremors would start, as well as involuntary muscle movements. I got into the habit of having 1/2 a bottle of beer each night while watching tv in bed and the next thing I knew, I was out cold (my tolerance went way down some years back when all my symptoms started). Now that I'm on meds, I feel they really help control the adrenaline rushes (and stopped the migraines) so I don't drink (that and the fact that the doctor said I shouldn't and also, I suddenly started having allergic reactions to beer) but once or twice a year I will have a shot of Jägermeister (like for my birthday) just so I don't feel totally deprived.

Hello, I have to work in order to support my children (but would love to have the luxury of staying home). I was able to change my hours a few years back so that I start 30 minutes earlier (so it isn't as hot outside when I commute). Also, I take the long way to work (bus plus subway) and take the local train rather than the express so I can sit the entire ride. It may take me longer to get to work this way but I can sit and not do much walking to transfer between modes of transportation. On bad days I call a car service and on really bad days I call in sick and use up all my vacation time. I am lucky because my husband is able to pick me up in the car after work. I don't know if I could work if I had to do the commute both ways. I purposely live in the city and we did not buy a house in the suburbs (that my husband and children wanted) because I don't think I could handle the long commute (I am no longer able to drive). Being close to public transportation makes me feel less dependent on others. The people I work with directly know about my condition but the higher ups do not. Luckily, we have a decent amount of time off and I've been here for a while so they know I'm a good worker. I'm also good at hiding my condition.

I get the adrenaline rushes as well but my heart is super-healthy. Besides super-fast tachycardia, I think the adrenaline rushes are the worst symptom ever! They were enough to drive me crazy and keep me from getting any sleep. Most doctors looked at me like I was nuts but my endocrinologist believed me and kept testing me again and again for an adrenaline-producing tumor (all those test were negative). I now take a low dose of Methyldopa (it blunts the adrenaline rushes) and also helps to lower my blood pressure/heart rate a bit when I'm standing. One specialist I saw suggested beta blockers but then I since found out that (due to other medical issues) I definitely should not take beta blockers so then a specialist at Vanderbilt prescribed the Methyldopa. Once in a while I can feel a very blunted surge coming on but the panic is gone, I don't jump or shake, etc. - their intensity has gone from a level 10 down to a 1 (I am hyperandrenergic). I also found that when I had all that adrenaline cursing through me, it helped to get up and do something - no matter how tired I was - like clean the house or vacuum the rug - it more normal to me to engage in an activity that "released" the adrenaline rather than lie down or sit watching tv. I also find that the more I exercise each day, the less I get the episodes of adrenaline.

We all have "strange habits" Have you ever had your blood sugar tested? You mentioned lying down 15 minutes after eating ramen and being exhausted and I know that ramen is full of salt (a good thing for some of us) but also pretty high on the glycemic scale. I'm wondering if you were so tired after eating it due to your blood sugar rapidly rising and then crashing - blood sugar issues can also cause nausea. (My endocrinologist diagnosed me with reactive hypoglycemia some years back after my tachycardia worsened.) I've had to force myself to eat small meals all day long (seems like I'm always eating) and really cut out the sugar/starch and I feel a lot better now. I found a high protein diet really helped me. One things that bothers me is that I come from a big family of people who love their dessert. When I go to family functions and everyone is shoveling in the cake and ice cream right after the meal, I have to wait an hour or two after eating until my blood sugar drops in order to have the sweets (and I have very small portions now). If I eat too much at once I fall dead asleep into what we jokingly call the "sugar coma" I also notice that when I eat big meals I get very hot but then a while later my hands turn to ice and I get really, really cold and have to pile on sweater or blankets while I'm digesting - sometimes I even get the shakes. (I can't have fruit juice at all and forget about soda.) I was warned no baths at all and to take lukewarm showers (no hot tubs either). This really helped because I used to nearly pass out and see spots in the shower (and lose my balance sometimes) and I didn't make the connection to the water temperature (I used to love long HOT showers but no more).

Hi Missy, I've had the tilt table test at 3 different hospitals. I think my heart rate shot up to 145 during the first one but that was at the 25 minute mark (which doesn't qualify as POTS). I went to Cleveland and it was the best 3 days of my life - barely had any symptoms (which was rare but I had no stress - no work, no children) and that test was normal (other autonomic tests were positive). Months later I then took my own blood pressure at home after lying down, standing for 1 minute, then 3, etc. (as advised by Vanderbilt) and my reading fit the POTS criteria (I started crying, shaking and barely could get to 10 minutes of standing that day. when I was done with the "test" I was wiped out for hours). Then I went to Vanderbilt I didn't quite meet the criteria of POTS. However, I was diagnosed with orthostatic intolerance and dysautonomia (a doctor at Vanderbilt told me they don't like to label everything because some syndromes overlap and they didn't want to pigeonhole me into a diagnosis). I'm sure some folks could have the test 20 times and they would be positive all 20 times but I also think that for others, how you are feeling on a particular day can have a lot to do with the outcome of the test. Also, my tests were months apart and little by little my doctors were telling me to drink more water, eat more salt, force myself to exercise, so I think that might have contributed as well - since I was starting to follow the POTS treatment without knowing it). While I can't exactly claim I have POTS because I'm on a bit more of a delay, I have ALL the symptoms - and then some. Missy, I'm curious to hear what your doctor has said. Did you get back the report? Did you have any other autonomic testing besides the tilt?

Hi Don, I hope you are used to your cane! I bought myself a cane seat last year. I've used it a handful of times since it is a bit on the cumbersome side and I also don't want to decondition myself. The first time I took it out of the house I was embarrassed (and my kids were too) but I actually found that when my "episodes" started and I wasn't feeling well, I had less anxiety during them because people around me would see the chair seat and assume I had a medical condition and not just wonder why I was acting weird (like trembling and yelling at my kids that we had to leave a store immediately or sitting on the floor in the supermarket, waiting for my husband to come and get me). Not that I want anyone's sympathy, but I definitely noticed that people were nicer to me with the cane. For instance, nobody grumbled when I walked too slow or needed a break walking up steps. I have the greatest difficulty with slow walking (like going to a museum, shopping, or on a tour of a historical house) and found that rather than pacing back and forth, sweating and having cardiac issues because I couldn't find a seat fast enough, I could just sit on the cane seat. I took it on vacation with me to an amusement park (it was great to wait on while watching my kids on rides) and when I took my kids to Dave & Busters. I found that just leaning on it as a cane frequently helped as well. Does anyone else use a cane seat?

I am hyper. I had adrenaline surges for years before being diagnosed. My endocrinologist performed the 24 hour urine test 2 or 3 times over the years but it was always negative (maybe because I unluckily never had the surges during the testing? I usually went to him to be tested right after a major episode so maybe the timing was off?). My systolic blood pressure hovers around 100 (or as low as 90/50) but can easily shoot up to 135 or beyond (it is the fluctuations that make me feel miserable) and it is always the lowest when I wake up in the morning. I could go to loud rock concerts without any problem and my screaming children didn't even bother me as much as they did my "normal" husband but I hate it when the radio is very loud and every once in a while in a large crowd with overlapping voices, it would feel very surreal (hard to explain - sort of like a bad movie with 100s of loud voices in your face). Every time a car honked its horn or the doorbell rang, I jumped and my heart would race and I would sweat profusely. Methyldopa was recommended by Vanderbilt and it has been a godsend - I feel so much more mellow! I have the tremor mentioned in the beginning of the thread but it happens at night while lying in bed and then I wake up like that. I'm not sure if this is due to my meds wearing off at night or because I've been lying down long. While lying down makes me feel better, being flat gives me intense pressure in my head. I normally don't lie flat but there are times that you have to such as having an MRI or an exam and during that I will have unexplained muscle spasms which cause my leg to jump. Doctor said my blood flow while supine is hyperkinetic so I sleep with 6 inch metal risers under the head of my bed.

Hi LynnieC, I was nowhere as sick as your daughter but before I was diagnosed my biggest issue (besides cardiac and the nearly passing out) was migraines. It was something I had lived with for years but they had worsened. I tried Topomax but it didn't help much. Over the years various neurologists told me they were everything from ice pick headaches to cluster headaches, sinus headaches, migraine headaches and menstrual headaches. It got to the point where I could barely stand when the pain struck and you could see the veins sometimes bulging on the sides of my head. At one point an episode lasted more than a week straight so I went to the emergency room (thinking I had something serious like an aneurysm) and they put me on iv pain meds but that didn't even help (looking back, I think it didn't help much because of the positioning - the emergency room was full so instead of putting me in a bed to lie down, I had to sit for hours in a sort of folding chair on iv). CAT scan and MRI were normal. Eventually my doctor suspected Dysautonomia (due to the cardiac issues) so I went to Cleveland Clinic and then Vanderbilt. Vanderbilt asks you to keep a log of blood pressures (lying, standing, etc.) for a few days before your appointment (sort of the poor man's tilt table test). That log was the biggest eye opener into part of what was wrong with me. My whole life I had always been told my blood pressure was fine or on the low side (sometimes 90/50) but I discovered that when standing or walking it would shoot up - sometimes very high. It never occurred to me to take my blood pressure standing up. To make a long story short, I cannot take beta blockers but was prescribed salt tablets, along with drinking 2-3 liters of water a day, full-length compression stockings (to keep the blood in the upper portion of my body) and a small dose of Methyldopa (the Methyldopa is a centrally acting antiadrenergic and allows your veins to expand - thus lowering your blood pressure). While I am not symptom free I have improved greatly (two years ago I often wasn't able to care for my kids and thought I'd have to quit my job but now I can somehow make it through most days). However, the most striking improvement I see is with the headaches. I think the headaches had a lot to do with the lack of blood flow to my brain and my blood pressure spiking every so often when standing. I'm not saying this is what is wrong with your daughter but if you can't get to a good dysautonomia lab for testing, you may want to start keeping a log of her blood pressure and heart rate when lying down, then standing up for a minute, then 3, etc. I hope you get to the bottom of this very soon!

Hi Brittni, I had hemodynamic testing at Cleveland Clinic last year. Since I am allergic to shellfish (and a million other things), they modified the dye being used (it did have a radioactive tracer though). I was really terrified about going into anaphylaxis, but didn't have any reaction to the dye. They injected the dye into my iv line several different times during the test (while in different positions), it was a little uncomfortable but not horrible. I found the test helpful in that I was able to learn that my circulation is hyperkinetic while lying flat. Now that the top of my bed is on 6 inch risers I have a lot less issues when lying down (I also - finally - sleep through the night now and don't have to urinate every few minutes). I had the QSART as well - that wasn't a big deal at all.