bunny

I don't know that I'd say it's difficult for me to not have my head supported, but I feel much better when it is. Especially when I'm dizzy, having my head supported feels much better. Hmm. Thinking this one through, I normally feel better in a reclined chair, but don't mind upright ones if my head is supported. I recall reading something about neck instability with EDS patients, but I don't have EDS myself.

Let's see... ... a couple of times for anorexia. The first hospital was excellent but they didn't specialize in eating disorders so they sent me to a treatment center which wasn't so good, I left the treatment center AMA. Quite a shame as the first hospital really did wonders for me. If they would have kept me, a few more weeks probably would have gotten me on my way. Second hospital (a few months later) was terrible. It was a "teaching hospital" and all they did was see the patients as guinea pigs. They didn't care what happened to the patients and didn't seem to have any plan for actually helping them. Patients were "healthy" when their insurance ran out. For the poor kids who were wards of the state, they were there for months and years at a time since the state kept paying. Let's just say some of what they did to us there can't legally be done to prisoners in the United States. Terrible experience, took me another year afterwards to deal with what happened there (thanks guys!) on top of dealing with the anorexia. ... a couple of times for cardio issues. Mostly ER visits that turned into observations. Other than an arrhythmia, no problem found. Even with rock-bottom blood pressures & pulse, they never saw anything abnormal. At least the staff was always nice. After awhile I just stopped bothering to go. ... GI issues. I stayed away from the hospitals for these. After all of the above experiences, I determined that hospitals are expensive places you go when you want to get sicker/die. If you want to stay well, stay out of the hospital. It's also much easier to refuse poorly-concieved procedures when you're outpatient. When the doctors say you have everything from cancer to celiac to Crohn's to liver failure, they're blindly throwing darts without thinking the mechanisms & biochemistry through. I decided to keep all of my organs and refuse their treatment, set up a small lab in my kitchen (thank God for my undergrad/grad degrees in microbiology & some med school) and managed to cure it with a few old medical texts and a little homebrew pharmacology. 5 years of **** reversed in 2 weeks of treatment. And that was 4 years ago, no relapse. At this point in life, I'm ironically the healthiest I've ever been. Other than the dysautonomia, osteoporosis and a little dain bramage from the anorexia days, I'm perfectly healthy. Only the dysautonomia affects me in my daily life. The other two just make me be a bit more careful and take precautions. Compared to where I've been, this doesn't seem so bad.

I hit this too, but usually only when I'm really doing cardio/pushing my body. Just walking doesn't seem to trigger it. My BP and pulse almost immediately drop after exercising. As in my pulse will go from 150+ down to 65 within 1 beat and stay there. So, I predominantly use the gym for strength training, which makes me dizzy while I'm doing it, but that usually stops a few minutes after I stop lifting weights. My cardio is usually walking or inline skating. Walking is alright and usually doesn't trigger things too much, but I don't feel that sense of accomplishment afterwards like I do after skating. Skating also allows me wear protection for my osteoporosis (helmet, thick pads, padded shorts) without people thinking too much of it. I just plan on passing out, so I'll keep up the intensity until I get back home, take off my skates and leave the pads on until I stabilize. Lately I just come in and lay down on the couch still wearing the pads and pass out. The only thing I can suggest from experience is to take the workout down a few notches. I rarely have symptoms from walking. Also, be consistent. My worst problem having to fit in exercise in the very limited free time I have these days. My work has me on the road most of the time, with a brutal and inconsistent schedule. Back when I was in college and was able to have a daily routine, the dizziness afterwards was dramatically better.

4 TTT? One was more than enough for me. I wanted to be off that table even before the test was over. For mine, knees, waist, chest strapped down, arms at my sides. Normally they preferred to strap the person's arms down next to their sides, but I requested that they didn't. I think it'd definitely change the results. In normal healthy people, when taking a blood pressure you're supposed to add/subtract 2 mmHg for each inch the arm is raised/lowered from the heart. Logically, this effect would be exacerbated by blood pooling. I've also experienced this with tilt training at home, with my wrist brace getting very tight as blood pooled in my hands.

I've had hair loss, but it's been more of a secondary issue from GI issues that lead to malnutrition/inhibited absorption of nutrients. As to how much the dysautonomia played a role in the GI issues, I'm not sure nor are my drs. But hair loss does seem to come up quite a bit on this forum. Elfie: A quarter in one week? Ouch and wow. I can't even imagine that.

Providing it wouldn't interact with anything you're already taking, a nice full-bodied read wine. That usually gets me very relaxed. If I need more "encouragement", I have old college textbooks & recordings from college lectures of classes I detested and are solely useful for putting me to sleep. They put me to sleep back when I was taking them, still do today.

For me, the injection of the novacaine is often far worse than any pain they might generate from hitting a nerve, so I try to go without. For me too, the pain relieving function of it seems minimal, especially compared to the pain of the injection itself. Without epi, any numbness is gone in about 3-5 minutes with me.

Nope, not me. Been bit by all sorts of animals over the years, none rabid. BUT I've been symptomatic for POTS since I was a child too.

I've been interested in this, particularly after seeing NASA's bed rest studies where they do an inverse tilt (-6 degrees) on healthy volunteers and get very dramatic results. If a negative tilt does THAT much to them, and I've had good luck with tilt training when I have the time/energy for it, tilting up the bed sounds like it might work for me. To those who do this, how do you keep yourself from sliding down/out of bed? How much did you do? and how long did it take for you to adjust? and did you feel fine after you were awake for an hour or so? I'm assuming that starting off slowly and gradually is the best idea.

Humidity is my breathing nemesis. Especially when indoors and the temperature is moderate to warm (75-85).

It's actually well supported in the literature in more than just the articles you've posted. It's not always well-received by the patients. Trying to find the time in my schedule to do it is the main issue for me. There's the 30-40 minutes of doing it + another 15-30 minutes I need to nap afterwards. I also don't care for how I feel afterwards, so I do often skip the sessions. I prefer to do it with a friend around as I don't always stop in time to avoid dizziness and falling. I've been out of practice on it for awhile, but when I have the time for it, I'm usually doing it once a day, every day and have had good results from it.

I know what Lemons2lemonade's talking about, but this was different. This literally started and was over in 2 seconds flat. No perception of time slowing/speeding up. It didn't feel like an out-of-body experience (had those before), no reason for an adrenaline surge. Heart rate, breathing seemed unaffected. Didn't have a hrm with me but vital signs that day were normal by my standards. kimbellgirl: I'm not sure if that's quite it either. It wasn't like my feet stopped moving, rather it felt like I had an instant drain of energy, intense dizziness and was about to collapse. The really unusual part was that after that 2 second interval everything was fine. Plenty of energy, no dizziness whatsoever. The suddenness and severity of it and it being a new symptom is what scared me. I'm also very puzzled by how quickly it was over & me feeling completely fine afterwards. Usually if I pass out, I feel rotten when I come to, but eventually feel better after a few minutes. This was just a quick 2 second blip and that was it.

AllAboutPeace: I've had a few echos and overall nothing found by the cardiologists. I did find that my heart's ejection fraction (how much blood it's actually pumping each stroke) was substantially lower than normal, which could indicate a valve issue or deconditioning. I did ponder mitral valve prolapse, and pulled the recordings of each echo and went over them in detail myself, but not seeing the valves doing anything unusual. An irregular heart rate, but the actual muscle movement itself was normal, valves appeared to be normal. I normally don't get scared when my body's acting up, but at that time I was really hurting and the clicking was a new symptom. It only happened that once and that was probably 8 years ago now. Just chalk it up to another strange thing my body decided to do.

I've always had trouble with the Omron units, both wrist & bicep cuffs. Similar problems to what dizzyde & hholmes13 experiences -- they just don't seem to be able to find a reading or if they do it's way off, usually obviously far too high. The only "home" model I have which works reliably is a bicep model from Microlife. 9 times out of 10 it'll flash the irregular heartbeat symbol at me angrily, like it expects me to somehow fix that problem. ALL of the home units, particularly the Omrons, are arm/wrist crushers to me. PAINFUL squeezing of my arm/wrist, to the point that they usually left marks that'd take a half hour to go away. I still have the Microlife unit but recently got a Critikon Dinamap 8710 for home. Yes, it's a hospital ICU monitor. My Dr helped me get it and we found it used for $50 from a hospital that was upgrading their facilities. As you'd expect, it actually works quite well even with my arrhythmias. I believe it'll read down to something ridiculous like 30/10 and a pulse down to 20 or 30. Lowest I've seen it read in the past month is 74/34. pulse in the mid 30s. It also has a few other useful features like a 3-lead ECG and O2 sat. I also like that it's not the arm-crusher the home units are, only takes about 20 seconds for a reading, and I can actually find cuffs that are my size for it (small) compared to the home units which seem to be designed for the morbidly obese. Some other great features of it are the very long hose (~10 feet) and that it'll automatically take measurements at intervals and keep/print a log for you. It's great for standing exercises/poor man's tilt tests and also nice to have when I'm feeling really rough and want to see what's going on while I'm passed out. It's been quite useful thus far and I've learned a few things. I'm not usually easily awakened, even by people shaking me and the BP monitor's clearly shown why -- I'm practically comatose when I'm sleeping. Even if I try to wake up, my BP/pulse are just so low that my body just doesn't have the oxygen it needs to get up and move. Same thing for the times I'll wake up, sit up in bed and immediately pass out. We're still finding new patterns as we get more data in from it. Kinda fun to see the correlation between types of dreams, pulse, and BP. Also have seen a correlation between my phone ringing while I'm sleeping (even if I don't remember it) and pulse/bp. I also have a few things I want to try, like setting the low BP/pulse/O2 alarms and see if I can train my body to not let it get so low.

Add me to the "don't tell" group. In my home state, employers can fire you without cause/reason, or the more popular version these days, laid-off. I also keep work at work and personal life is personal.

I don't get sick often, especially for the usual creeping crud that goes around. Instead, when I do get sick, it's usually a multi-system affair and I'm looking at a serious condition with potentially deadly consequences. I had a few friends who picked up the oink flu and I made daily deliveries of food and meds to them without a single sniffle myself.

I'm quite the opposite. I've worked a few jobs where multiple sources of information were pouring in and it was up to me to keep an eye/ear on all of them for something which might be of relevance to me. In some cases it was up to me to make sense of the chaos. I actually thrive on it. The crazier things get, the more in my element I am.

The roommate/no roommate thing is more of an individual thing than medical concern. I'm with Jangle -- I intentionally lived FAR off campus because I didn't want to deal with the idiotic things college kids do and wanted to be able to sleep in peace at night. As far as the medical side goes, it depends how much POTS interferes with his life. Mine's pretty bad at times, but even with that, multiple GI issues, and a couple of times being given "x months to live" by the doctors, I still stayed independent and lived on my own. As far as classes go, good luck on getting priority for anything. He'll be a freshie so generally at the bottom of the totem pole for anything. If it's a larger school they'll have an office of disability/accommodations which you might want to contact. I personally didn't go this route as I have a rather fierce independent spirit and generally don't want help from anyone. I managed to do just fine.

I had the strangest thing happen to me the other night. I normally have plenty of warning before passing out. Usually plenty of dizziness, then a predictable timeline of symptoms. However a few nights back I was walking around the neighborhood with a friend and had what I can only describe as my body having a momentary power outage. Out of nowhere I just instantly had no energy, no balance, vision started to gray out. I was walking straight and when this happened my right foot landed in a way that caused me to make a left turn onto the sidewalk. The whole thing only lasted for 1-2 seconds and then I felt perfectly fine. Everything else about my body was perfectly normal. The only thing my friend noticed is that I was taking the sidewalk turn a little earlier than I usually do. We carried on the conversation we were having like nothing was wrong. Anyone ever hit this before?

Between anorexia & POTS, I managed to make my way through undergrad & some grad school. I took advantage of the good moments and cranked through as much work as possible when I was feeling good. If I suddenly got a burst of energy at 3am, I was going to take advantage of it for as long as I could carry it. This is one of those luxuries you have with college that you most likely wouldn't have anywhere else in life. Breaking up tasks into smaller bite-size tasks was also quite helpful. If I only had the concentration for one page at a time, that's what I did. Not the most efficient studying, but it gets the job done. Another trick was to learn how to be efficient with studying. Not everything was worth putting effort into. I used to group things into "guideposts" and would only learn enough to recognize points A, D, G and be able to extrapolate points B,C, E, F based on A, D, and G. By intentionally NOT studying parts of the material, I was able to study these guideposts in-depth. In doing so, I'd actually understand the material rather than just read & regurgitate it, hence the parts I didn't study would become obvious. I think it'd be safe to say I probably spent more time finding ways to avoid studying everything than I did actual studying. It also helps to figure out what the professor/teacher's focus is on and how that'll influence exam questions and assignments. No use studying it if the prof isn't into it. However, if the prof's research passion happens to be the same field as Chapter 13, you know he's going to be asking every question under the sun about it. Even standardized tests have biases. Last but not least, do work as you can without worrying about time. Realistically speaking, it took me 10 years from the time I first took a college course to the time I got my degree. I took a few classes at a time, as my body and finances would allow for. At the end of the day, I still am a college grad and in many ways have done more & am better-off than many of my high school classmates who did the traditional 4-year route. As an added bonus, I paid for college in cash. Never having a single student loan to worry about: priceless.

My feet are usually cold and I'm almost always wearing at least one pair of socks. Mine's just from poor circulation. Slow pulse, low BP, and a low body temp (96F) and the extremities just don't get enough bloodflow to keep them warm. And yes, I DO wear bunny slippers around the house.

As long as I'm getting enough sleep, mornings are a very reliable predictor of how my body's going to react for the day. I feel like I'm a freight train -- very slow to get going, but once I hit mid-day I'm chugging right along. Then as night approaches I slowly fizzle out. Add a lack of sleep to the mix and mornings are really bad. I've had plenty of times where I'll wake up, go to sit up in bed and pass out. Usually another hour or so of rest will fix that and I'm back to my normal self. Difficult when you've got a schedule to keep though. If I do wake up feeling rather rough, it's a major challenge to get ready in the morning. I also find waking up from naps can be a challenge as well, with me feeling drugged/drowsy.

If I were you, I wouldn't worry about it getting worse. I'm not saying that to be flippant, but if you look over the posts on the forum, there's a wide range of severity. From those who've never fainted and just have tachy all the way to people who are bedridden. For the most part, the majority of people here generally seem to have symptoms that don't get worse. As far as staying positive, after everything I've been through myself and seen others through, this isn't bad. If anything, life's quite good. And that's with me absolutely hating my job and having hit a ton of setbacks in life. As I posted on another thread, happiness is a choice. Sometimes it takes more effort to make that choice than others. And there are other times (dental work?) where I'll just set a countdown timer on my phone and be happy to watch the numbers decreasing. I also take time to find the joy in life's simple pleasures. Even just feeling the sun's warmth or watching a butterfly brings me joy. Daily life for me is relatively normal. I work 40-80 hours a week. I've been on the road for work for ~3 years now. I've learned to pace myself and pick up on my body's signs and trends and react to these rather than wait for things to go wrong. Mornings and evenings are rough for me, as are hot showers and heavy meals. I do pass out, but get plenty of warning and usually exhaustion plays a role. In general, I just go on with life and work around my body's idiosyncrasies.

I actually use the electric blanket for this sometimes as well -- it'll lower my bp (vasodilatation) and I'll usually get drowsy and go to sleep or pass out. Either way, mission accomplished. I'm bed, in a safe place if I pass out, and not feeling the pain. It's usually gone by the time I wake up. One of my mottos is If I'm going to feel miserable, I might as well be asleep. It seemed like the most natural(?) if not time-tested method to me. From what I've found, red wine has a bit more of a kick to it for this purpose than white wine. The fruit wines are weaker than the white. It's too bad the medical community wouldn't take a remedy like this and give it serious study as it's been quite effective, as well as enjoyable, for me. There isn't much money they could make off a $4 bottle of Charles Shaw from Trader Joe's.

I got told off by a 9 year old. That's how! Seriously. I was inpatient in the children's hospital in my teens and was having a rather rough time physically/emotionally/mentally. A little 9 year old girl volunteer came skipping into my room with a great beaming smile (which I wanted nothing more than to wipe off her face at that time) and asked if I wanted to play Bingo. I wasn't in the mood and said I wasn't interested. She shrugged and started to skip back out of the room. I asked her "why are you so **** happy?" Without missing a beat she turned around and said "Because I wanna' be!" and beamed an even bigger grin back at me then skipped back out of the room. I don't think she was actually trying to tell me off, but what she said was quite profound and it kept me deep in thought for the next couple of days in the hospital. She was right. Happiness is a choice. It's mainly in how you choose to view your circumstances. This perspective is also heavily influenced by what you've been exposed to/made aware of. The more of the world's unpleasantness you've seen/dealt with, the easier it is to take joy in your own circumstances. I have a friend who has been a paraplegic for 20+ years -- I'll take what I have over that. I've had several friends who've been sexually abused/assaulted. I'll gladly take my problems over that. I've had friends who've: lost a child, committed suicide, had cancer, had parents die from cancer, filed for divorce, been homeless, been stabbed and left for dead. Again, things I wouldn't ever want to have to deal with myself. In light of that, my life ain't so bad! And that's just my friends. Remember, it could always be worse. Be thankful it isn't. I see all of the unpleasant things in the world and thank the Lord I've been blessed to not have to endure them myself.