briarrose

Well you all had good responses but Hellane & Johnsongang replies really got my attention. Some of these theories might be correct but how can you explain that NASA astronauts experience POTS symptoms upon their immediate return to Earth? Were they too stressed out on their mission? I think that something changed in their autonomic system which caused them to experience Dysautonomia symptoms. This syndrome is dated back over a Century in military illnesses. Yes those men & now women are under extreme mental fatigue but their body is taking a beating as well. http://www.gulflink.osd.mil/medical/med_syndrome.htm Are women who develop POTS while Pregnant unable to handle the mental challenges of pregnancy? Chris Caulder has some good explanations for POTS are they all stress related, I personally don't think so. (please look under the causes he has listed http://home.att.net/~potsweb/POTS.html) I think that the brain plays a part in all of this but it's more closely related to the functioning or dysfunctioning of the Hypothalamus/Thalamus. Could the nervous system be so stressed out that it altered the autonomic functioning of this gland to cause our systems to go haywire? And how can you explain the youngest Dysautonomia patients being from their infancy, are they stressed out as well? I didn?t even know that babies could experience such mental fatigue. This theory could possibly be linked to SID?s. SID's is still an open field, could they be close to making the link to some sort of Dysauotomia? Here's some ideas - http://www.sidscenter.org/SleepPosition.aspx Everyone had good ideas to ponder, how far can your mind take you? I don't think that 1 person (your PT) that doesn't know anything about Dysautonomia, should be so quickly to judge or lump us into 1 thought pattern of illness. Dysautonomia is so complex, some of the top docs say that research is 20 years away from knowing anything pertinent.

Epogen/Procrit helps raise your blood volume, if it's not working then you probably don't have enough Iron in your body. Florinef is to help with fluid volume (salt & water balance), not blood volume. I use to do all 3 drugs but finally weaned myself off of the Florinef. Epo & Iron have been the best treatment that I've been given since getting this horrible illness, I think I'm as close to day to day function as I can hope to get. The idea behind getting Epogen is two-fold, correcting anemia for those of you that suffer from that and max out your blood volume to help with Orthostatic Intolerance so you don't have the wild swings in blood pressure drops.

3 1/2 years ago when I started Procrit I would feel fluish for the first 24-48 hours after the injection. I've also found that if they keep me at 10,000 U, I do better. When they try to give me 20,000 U I get really ill. Procrit and IV Iron have been the best treatment for me, I'm as close to normal as I can probably hope for. I have energy to live day to day again.

A few times in the last couple of years, not sure what time of the month but my core will sweat and at the same time my extremities will be icy cold. It's a very uncomfortable feeling that is hard to correct and the other POTS symptoms are usually present; nausea, headache, tachycardia, etc.

Dr. Giesla Chelimsky

Ok, not sure about everyone else but this just struck me wrong. Makes me feel like I wasn't legit before wiggle came along....??? Here we've been struggling and now someone famous finally comes our way to bring attention to our illness and we have to rename it for him because the world feels pity for one....???? Sorry, maybe I need to go back to bed, sleep awhile and get back up on the right side... http://en.wikipedia.org/wiki/Orthostatic_intolerance Orthostatic intolerance From Wikipedia, the free encyclopedia Jump to: navigation, search Orthostatic intolerance is the failure of the body to properly adjust to an upright position, especially with respect to blood flow, heart rate, and blood pressure. A common manifestation of chronic orthostatic intolerance is postural orthostatic tachycardia syndrome. The loss of orthostatic tolerance is also an undesirable consequence of human adaptation to space and has often been emulated in head-down bed rest studies. On the 30th November 2006 it was revealed that Greg Page, a member of the popular Australian childrens' entertainers The Wiggles had quit the group due to a mystery illness, which was revealed to be orthostatic intolerance. It has been suggested that this illness be known by the layman's term "Wiggles Disease" in honor of him, and in order to spread awareness about this illness.

check these out - not sure how reputable these sites are but http://www.enlmedical.com/article/003247.htm http://www.naildoctors.com/ http://www.disability.vic.gov.au/dsonline/...ms?OpenDocument

Ringing ears can mean hypovolemia or anemia. When my ears ring the worst it's because my Hematocrit is low. Since I've started using Epogen injections my ears usually only ring when my hematocrit drops below 40 (which is still in a normal reference range but not for me.) I also have spasms in my ear which anyone else can hear too if they have a stethoscope.

I'm not sure what symptoms you suffer the worse as there are things you can do depending on your body but Try to avoid alcohol and just enjoy the evening out. Sit as much as possible during the party. Get plenty of sleep/rest the day of the event. Hydrate and eat lightly before the party. (Don't want to eat too much and feel that horrible exhaustion but you don't want to go hungry and get hit from the other direction.) Might think about eating extra salt to retain your fluid. Avoid adrenaline rushes! so try to control emotions There have been holiday seasons over the past few years that even though I did all the right things I barely made it through or didn't go at all. It's funny when you are ill and people know it and then you show up to parties like this, they say "I thought you were sick, look pretty well to me." UGH - How do you explain on the inside to ignorance? Anway good luck to you.

Happy B-day Melissa, imagine what it would sound like if we were all singing happy b-day too you Hope this finds you feeling better.

Clue - NO Some of the specialists are saying that they are trying to redefine and classify in categories these Dysautonomias. I guess we'll see, until then - Potato, potatoe...tomato, tomatoe

I'm not a doctor but you sound like you may have POTS and possibly orthostatic intolerant (depending on symptoms upon vital changes) but not necessarily Orthostatic hypotension. It's really hard to say based on the small amount of info that you gave us. POTS http://www.ndrf.org/PDF%20Files/pots_raj.pdf O.H. http://www.aafp.org/afp/20031215/2393.html both http://www.cfids.org/about-cfids/orthostatic-intolerance.asp Orthostatic intolerance http://www.nymc.edu/fhp/centers/syncope/or...intolerance.htm http://www.mc.vanderbilt.edu/root/vumc.php...dc&doc=4788 Everyone is going to have a different opinion, even the experts to some degree. I recommend research and reading, you will become your own best expert

Corina I haven't gotten mean yet but am certainly defensive and withdrawing from his behavior. I'm starting to feel that if he isn't going to listen and believe my explanation then he's not worth the time and breath that I waste. I never wanted to feel this way about him, I can't trust him and don't want to associate with him anymore, I just don't have the extra energy to waste anymore. I'm not one to usually make excuses, I have kind of a suck it up and deal with it attitude. I think that I need to take responsibility in the fact that I'm so busy hiding my symptoms that people really never see me as ill, only my kids know how bad I get. Example: I remember a few years ago when I had pneumonia, boy I felt so poorly. I waited all night until the doctor's office opened in the morning. I couldn't breathe very well, couldn't lay down, couldn't sleep and was having sweat/chills, aches. So the doctor's office opened and I called to ask if I could go get a chest x-ray, had already been seen twice that week in the doc's office and told me that I had the flu so I was getting tired of being seen. So they phoned in an order to the hospital for me to get an x-ray. I drove myself there, huge mistake because I got behind the wheel and I was so weak and out of it that I was truly scared, suprised I didn't get into a car accident. Got to the hospital and could barely walk in to the radiology department, I'll never forget how sick I was. They took my x-ray and then they had me get dressed and wait in the waiting room for the radiologist to look over my films. I nearly fell asleep in the chair. The tech came back out to get me because they wanted more films, checking fluid levels, I had a pretty good size pneumonia. (For me, My point is that people around us get so tired of hearing about us being sick that I usually just keep it all in now. I try never to complain about daily symptoms. So I guess if I was associating with someone that never looked ill and never complained and then listened to them say they have all these cognitive problems, hmmmm.) Maybe my fault? So if he isn't going to listen to me saying that I'm having horrible cognitive problems then maybe he's just seeing me blowing smoke, I don't know and I don't think I want to waste anymore time thinking about it.

Well it's sounds like a once in a life time opportunity, I would probably go for it. You can do some things to make it more successful. Because of the heat in the summertime, you might want to look into a cooling vest. Figure out hydration, possible medications, doctor's that might be available to you in case of an emergency and a doc back home that can back you up if needed. As for vaccinations, every one is individual and it's hard to say how you will react. Personally, vaccines that have a mercury preservative in them are a problem for me.

The article here states that O.I. is more prevelant in men then women! I wish magazines would do their research before they write to the world. http://www.who.com/who/scoop/article/0,19971,1564303,00.html

Get well and home quickly Melissa. I hope you are doing better today and you get sprung from the hospital prison soon Steph

Thanks guys, your support makes me want to cry. I appreciate your understanding.

Salted Almonds and Cashews. Pickled carrots, celery, pickles, etc. Beef Jerky. Salted pretzels.

This was exciting on many different levels. When he was first sick I sent the producers and the news reporter that broke the story some information about different Dysautonomia's and said they might want to look into this. Doubt they took it seriously but still.....

I spend so much time trying to cover my illness up that it would be nearly impossible to impress upon people how bad I really feel, even if they wanted to hear about it and they don?t. I work in a hospital and believe it or not, that?s the last place that co-workers want to hear about your chronic illness and ongoing problems. There are days when I?m at work that I nearly pass out but I cover it so well that people would be stunned to hear that. One night a few months back I was feeling so poorly that I grabbed one of the nurses to take my blood pressure, she was shocked to see that it was 85, I wasn?t even sure if I could make it home that night. One time I was sitting next to a nurse and I told him that I thought I was going to pass out, he laughed because he thought that I was just kidding around with him. I kept saying no I?m serious. I wouldn?t want the attention of a full onset faint. If I feel that coming I run for a closet, empty room or store room.

Thx guys Normally I wouldn't post something like this just because it sounds like I'm whining. But I read dizzygirls post and started to respond there and decided to take it elsewhere because I didn't want to ruin her post. Persephone I wouldn't ever want him to read my posts here. He wouldn't understand the progression of this illness and mindset and I've been through the wide spectrum over the past few years. I think all of you guys have a good point and I was thinking it myself, that since he's being so shallow, not wanting to listen to my explanation then he isn't/doesn't want to be that good of a friend, he seems awful quick to crucify me. Like Morgan617 said, With friends like that who needs enemies I guess I just wanted him to be important to me and it burns that this is happening especially from him. I even explained to him how I went to a Neurologist well over a year ago because I felt like I needed help with my memory/speaking problems. The Neurologist was zero help, not sure if he even listened to what I was saying.

I was going to put this post on dizzygirls topic but I think she means hers to be fun and this will just side track what she's trying to do. Not so funny! Recently I was talking to this guy that I really like and something didn't come out of my mouth right, I guess, I don't even remember saying it that way. I know I was thinking something else. Anyway I couldn't ever convince him otherwise. So he doesn't believe what I really meant because the "first things that a person say are suppose to be what they mean." The other problem is my memory. I'm starting to feel like an Alzheimer's patient. But he doesn't believe me, he thinks if I can't remember something important that it's because he isn't important enough to me, that isn't true. I don't know how to convince him otherwise. I know the stress of trying to say it right or trying to remember it, just adds to not remembering it. I know the more I try to explain things sometimes, the more confused I start to get. I can't remember the question or even the subject. Things come out of my mouth slurred, twisted, unclear, etc.... Some days I feel like a stroke patient Does anyone understand what I'm trying to say here? Sorry I wasn't more clear. Frustrated.

Congratulations!

How bout all of the above. Most of my family members, including myself have POTS & MVP but I'm not going to quantify 1 symptom over another and how much they bother me. It depends on the the individual day, because some symptoms bother me worse on 1 day vs another. Each person is individual and I'm not sure what you are hoping to gain here.

I was diagnosed 5 years ago but had my first syncopal episodes in 1983.