Wufflebear

Boy your descriptions sounds like something I would write. I do that exactly. Although my last instance of this was becasue I had to hold my pee for 3 minutes.... Of all the lame things to kick of an attack, huh!! My doc has no idea, barely knows what dysatuonomia is...My next meeting w/ the cardio is 03/02 or so... I will ask when I get there for sure. When I excersize (I do curves (30 sec standing, then 3o seconds sitting) or swimming about (err) twice a week. my pulse will either go from 60bpm to 150 in about 5 minutes or it will hang out at 60 for ever and then after about 20 min or so it will rush up to 150. Either way I feel like crud. headache, lightheaded, trip easily, loose my balance etc. etc. (-; I dont have the answer but you are not alone.

I was in labor for 32 hours. For 18 hours I was 'stuck' at contractions every 3 minutes but very little dialating. At the 18 hour mark they admitted me, due to my own daress and that they could 'stretch' me to enough dialation to admit me. Then I had an epidural and was supposed to "sleep" for a few hours...I just shook for a few hours. The doc broke my water...The baby was not coming down the birth canal and I was not dialating enough...I had back labor the whole darn time YUCK!!!!! Then my daughters heart started getting weaker and I started running a temperature and other things...So at the 32 hour mark I had a c-section, during which the adrenalin rush kicked in and I shook violently and the anestesiologist had to keep reminding me to breath. (He sat right next to my head saying "Breath" periodically. The whole time I had a saline and glucose IV...I told them I fainted easily and they gave me these...good thing.

I get it too. I only had it rarely thru college and beyond but then after mydaughter was born it became a regular fixture for me. Yes, standing, sitting too long in the wrong position (specifically straight up or leaning to the side will kick it off). I will cough all night and day for weeks. Sometimes It will kick off because I have been sick or something and othertimes it just happens. After I have a bad potsy time it will kick in too. I used to take dimatap dm but that no longer works for me...I have to triple the dose for it to have any effect and then I am fighting fainting the next day. I can take Niquil (10% alcohol kind) once before bed and it does ok. I can only do it for two nights though or the morning after the third I will be all fainty yucky. I have been on lots of antibiotics etc for it but it never does any good.

could be, but I have found when my system is really out of whack.... the bizaarest and minor-ist things will set off symptoms. Once I even got back into bed, and then got out my normal way and felt better. How about that for whacky... lol perhaps our bodies have a sense of humor they just are not letting us in on. (-;

I like swimming too. But I also need to keep that to 15-20 minutes or I feel awful when I get out of the water. I have a stationary bike at home I use sometimes. I find even 10 min before bed helps stave off hip pain in the night. I do curves sometimes...Three times a week tops. You are supposed to go for 30 minutes but I usually only do 15-20..anymore and I don't recover properly as a general rule.

I agree w/ Ernie. I think it does too, but I dont know of any proof.

Yep and yep. I will wake up with seemingly half my body asleep sometimes. Usually all on one side, from the ear and that side of my face...down thru the shoulder and arm and hand and side... very weird. I too thought maybe I had just managed to pinch something off but no changes in sleeping position help it. It does not happen all the time but it does seem to come in bursts...It will happen every night for a few nights and then go away for a while. I don't like it either. I swear I could have a stroke and never even know it. lol

I got the rapid shallow breathing symptom from this link. The first is on hypotension and the symptoms that can signal an underlaying problem... http://www.mayoclinic.com/health/low-blood...0590/DSECTION=2 "Some people with low blood pressure are in peak physical condition with strong cardiovascular systems and a reduced risk of heart attack and stroke. For these people, low blood pressure, rather than being a cause for concern, is a cause for celebration. But low blood pressure can also signal an underlying problem, especially when it drops suddenly or is accompanied by signs and symptoms such as: Dizziness or lightheadedness Fainting (syncope) Lack of concentration Blurred vision Nausea Cold, clammy, pale skin Rapid, shallow breathing Fatigue Depression Thirst " There is also this: http://www.mayoclinic.com/health/low-blood...0590/DSECTION=6 "Even moderate postural, postprandial or neurally mediated hypotension can seriously affect quality of life, leading not only to dizziness and weakness but also to fainting and a risk of injury from falls. And severely low blood pressure from any cause can deprive your body of enough oxygen to carry out its normal functions, leading to damage to your heart and brain. In addition, chronic low blood pressure may increase the risk of Alzheimer's-type dementia in some older adults. A diastolic pressure lower than 70 over a long period of time is most closely associated with dementia, and for every 10-point drop in pressure, the likelihood of dementia may increase by as much as 20 percent....."

Same here. Bright lights (even a snowy day) and fake lighting are bad. I too have adjusted my monitors on my computers for comfort, but often I find myself looking away and typing... I also think I kind of turn my eyes off. I can still see but I just zone out and dont pay attention to what I am looking at. That seems to help me. The down side is I wont notice stuff. EIther that or I only pay attention to the one tiny spot I am typing in, like right where my curser is....and zone / tune out the rest... If I try to take in the whole thing...whammo instant nausea and headache.

Night driving is terrible for me. I have a hard enough time with blurriness, and seemingly no depth perception..but add glare and bright lights vs darkness to the mix. Yucko. I make my husband drive at night.

I dunno. I have had my problems since age four.

yep and yep. I work 8 hrs a day more or less on a computer. I had to unscrew one of the two florescent tubes over my desk. I put paper over the whole thing to dull the effects of the other one. I tried unscrewing them both and just using a little desk lamp...but then it was so dark...and I am always so tired.... I had perpetual desires to just take a nap. The computer drives me nuts too. And I am forever having aches and pains and neck and eye problems. I tried getting new chairs, adjusting the height of my desk, computer angle etc. etc. Basically I sit as reclined as I can get. keep my monitor up high so I have to look up to it a bit. (my eyes hit mid monitor) (looking down a lot tricks me out, dunno why). I still have trouble though... I make myself get up and take a walk once every 30-45 min 1) the longer I sit still the more problems I will have when I do get moving and 2) ergonomically you should get up once and hour and focus on something far away...it is better for your eyes. The longer I sit up the more I have a headache and the staring foggies and etc. etc. I just move around a lot and try to mix tasks. Althouhg because of the way I sit, I am told, people do not think I am working.... But then I suppose neither are they if they have time to gossip about it. also see http://dinet.ipbhost.com/index.php?showtopic=4497&st=15

I dunno.. My body is definately a creature of habit and anything new can cause trouble. I am so used to being stuck in ruts that if I do sit somewhere different or sleep on the wrong side I usually will have a sicker day... I will say that as long as you mentioned sleeping positions that when I sleep on my right side I am so hot I sweat but when I sleep on my left side I am shivering cold. The wars I have had with the thermostat in the middle of the night, when I was less than awake are funny.

once when riding my bike I was so winded. My body needed to breath faster but I couldn't. My lungs burned so bad. I had to get off and lay down in the grass for a while. Definately not fun.

Dionna- that is a tough one. Everyone is different and I have had it for so long (since the age of 3 or 4, first faint at 5 years old, first doctor round at 6 years old). Half the time I don't know what is normal and what is dysautonomia. I have lost jobs before because of this syndrom. I have gotten warnings, bad reviews...you name it. 10 sick days in a year?? yea right... I take a lot of unpaid time. Then add in family vacation? Religious holidays I don't get off from work. (I am jewish..we have a ton). leaving early on fridays for sabbath.... They told me to work more earlier in the week. This has never happened... in my entire life. (-; This job, it is hard to say. It seems like at about the 2-3 year mark they figure out that I am not going to straighten up and fly right like they want me too, cause I can't, and then my job is either made miserable for me or I am fired or I quite and go somewhere else to start the process over. This job is a sit down job. We structure our own day more or less, somedays less than more. I have a boss w/ Chronic Fatigue but the people further up the food chain do not get it, and likely never will. I had never told a boss about my problems till about a month ago (we had rolling lay offs and a pay freeze and lots and lots and lots of talk about Max output and working hard and documenting every second of our time.) EEEEEEKKKKK! (so what do I code, staring at my computer as? How about putting my head down on my desk?? err....how about 'organizing workload'. So I fessed up. I don't know if it will backfire on me or not..I have never done it before. I just keep checking in with him. LIke every 2-3 months I shoot him an email asking how I am doing....Are my priorities for work tasks in line with his? Are there any stresses or workplace issues (w/ co-workers getting nosy or gossiping) that I should be aware of. If there are I typically go directly to that person and try and understand what is going on. Usually, they just feel they are the only one who is truly working yadda yadda...So I sit there and ask for an hour to learn something from them....Sometimes I have to think hard for something I could beleivably learn from them...but either way it is usually productive on one level or another....and it buys me more time. Maybe another month before we start again... I dunno. Listen to your body. Don't overtax yourself for anyone..it is not worth it and besides it happens anyway all the time without us doing something we KNOW will be a trigger... lol I know staying home is not so cool. Besides I did that for two years in high school...bed ridden...wheelchairs and honestly, I think it made it worse. I would force myself to stand for a minute, then two to see how far I could push myself using my tricks to keep myself stable... Now I know that there is a threashold...I can push myself to a point and all will be well...it will just feel yucky. Then there is another point that I can not allow myself to pass. Usually if I do, I develope a new symptom or an old one worsens and then that too becomes a regular thing...Not cool! I guess I feel like a lot of time I have about 40% or less energy to go around. (divided a zillion ways..work, children, husband, me (dont forget yourself), religious stuff etc. etc. etc.) I keep lists and schedules. 8.30 arrive at work (hopefully) then 8.30-9 read emails...just read and respond. 9a-10a quiet tasks...project or something 10a-11a give online trainng session 11a-12a quiet tasks....projects alternated with staring at the computer hopelesly lol noon -12.30 lunch 12.30-1.30 you get my drift??? It can be altered w/ a boss' imput. I have to stay away from jobs where there is standing or stress. I have to stay away from jobs that have vague daily repsonsibilities or changing responsibilities, or unfixed work hours etc... I have to know what I need to do when at all times, so I can live thru it. I hope this rambling post helps. (-;

yea, I too stumbled upon this one by trial and error. It does help buy me some time too.

I have an appointment with Dr. Reddy in Eugene Oregon on 03/02. He is an electrophysiolgist. I will let ya know how it goes.

I bet! When i was in labor with our daughter my husband tried to get me to attempt to match his breathing...No way Jose! I though I was going to panic from no air! I felt dizzy and lightheaded. It made it way worse. We may breath fast but it is shallow, so I think it is different then hyperventilation. It is something else...like potsy. lol

So I was transcribing a discharge letter from my last real round of trying to figure out what is wrong with me (1989) last night. Then I went to bed. I dreamt that that particular doc, who had written that letter, was in hospital after fainting. So I went into the room with a glass of ice water and something else (not sure what) and tried to tell him it would help. The room was full of doctors btw. Anyway he groweled and then thru my new medical ID bracelet at me (the one with the dysautonomia diagnosis on it). I then looked at it, and he had rubbed out the diagnosis and scratched in 'Liar Faker'. I hope forums like this one and all the new sites and info there is on this disorder can change other peoples medical experiences. Here's to hoping!!

I breath like this all the time and have for years. When I really feel bad though It either increases or I will actually hold my breath..where I have to remind myself to breath. I also find the only thing that helps when It starts kicking up more is to watch tv or something...distraction is a good tool. It is no wonder I cant excersize sometimes...how much faster can you possibly breath. lol And i find too that if I try to slow it down I just get super spacy and air heady. It definately does not work to do that. Thanks for the feedback!

I have seen that rapid & shallow breathing is a symptom of dysautonomia. My breaths per minute since at least high school is like 25-27 breaths per minute (sitting and being restful). Anyone else have this?? No doc ever says anything about it. It is all the time. It probably slows down some when I am laying down. But I have not counted.

Briarrose & morgan617- Are you guys in the PNW too? Where do you go?

Thanks for posting that Lynda- I had a sleep study as a kid where they said just that about me and REM sleep ( i went into it fast, it was broken up and I woke up when it ended? or something like that)...but they also said it was normal. Sometimes when I take a nap, and sometimes in the am, I feel drugged...Like I am not all awake yet only it is much yuckier. Interesting...

Does anyone know of any good Dysautonomia (POTS, NCS etc) docs in Oregon??

I think at this point I have had a headache for three weeks, literally...But when I stand up it goes from a dull roar to a big bad thing. Sometimes it even stabbs me in the eye. How rude!