Gena

I was told by my doctor that this is often caused by dehydration or low blood volume. I always make sure to drink plenty of water prior to any blood draws. Gena

I take a half or 3/4 of 10 mg propolanol as needed, which is a few times a month. It really helps me with my arrhythmias. Gena

Lisa, Not sure if you alreay purchased a roomba or not, but the irobot company who makes them has a good comparison chart of all the models. Here is the link http://store.irobot.com/comparison/index.jsp I purchased our scooba on ebay and got a very good deal. Good luck, Gena

Hi there and welcome to the forum. I think you'll find many of us have similar symptoms as you are describing. Some of us also have overlapping conditions like chronic fatigue or fibromyalgia, which can also cause similar symptoms. It's sometimes hard to determine which symptoms are caused by which condition when you have more than one! Have you been officially dx'd yet? Hope you find meds or natural treatments that work for you. Hugs, Gena

Wonderful topic. I think we are all at varying stages of grievance or acceptance of our illness. I think I am doing both, depending on what day it is and how my symptoms are! I have been ill for only 2.5 years, but I can tell you that my whole personality has changed. Or at least it has brought out a lot of aspects of my personality that I don't like, such as anxiety, being scared of new situations, worrying, trying to be in control of everyone and everything and wondering how I will cope with this when I'm old. That is one of my primary concerns is how I'll be able to physically and mentally deal with this condition as I age. I don't think my heart can take the tachycardia, arrythmias and adrenaline rushes when I'm say 60 or 70 or so. I'm only 38 now. I think that working at a hospice has openend my eyes quite a bit about death and dying. I've always said I want to live to be 100. We'll see what God has to say about that one! LOL For the most part, I try to live each day and each moment without thinking too far into the future, except for short term goals and dreams -- which are certainly still important. Those goals have changed quite a bit though. One of the hardest things in coping with this illness is watching my husband have to deal with all of my limitations. They are mild limitations when compared to others I suppose, but nonetheless, I am not the same person he signed on the dotted line for 5 years ago! Oh well, as they say in Latin..."Carpe Diem" Gena

I've gotten both the "jerk-awakes" and the "almost passing out jerk awakes" and there is a big difference to me in how and what you feel. The "almost passing out" episodes while dozing off to sleep are the scariest, as they invoke all the symptoms that mkoven mentioned in her first post (pressure in head, racing heart, etc). It's really awful and scary, especially when you're alone. Somehow I eventually drift off to sleep. Maybe I really do pass out at some point, but miraculously, I always awake the next morning. Thank goodness! Gena

Thanks for keeping us updated Michelle. Melissa - I am joining the chorus of others in singing you the Happy Birthday song. I hope tomorrow, on your birthday, that you are feeling much better and that you can find some joy, happiness and comfort in the midst of a difficult time. Please know that you are in my thoughts and prayers. We're all rooting for you! Hugs and healthy thoughts, Gena

Rachel, I found these cushions online at Vitalitymedical.com http://www.vitalitymedical.com/Catalog/Cus...-Pads-162-.html They do carry simple foam pads and gel pads from $44 too the much more expensive pads. Also, I found some relatively inexpensive ones at allegromedical.com http://www.allegromedical.com/browse/brows...elchair+cushion They start as low as $40. Here is a geo matt cushion that Margaret mentioned.. http://www.imed.com/shop/detail.cfm/sku/K6947/rfr/BEY And one last site. I like this one b/c it shows actual user ratings of the cushions. http://www.spinlife.com/critpath/match.cfm?categoryID=92 HOPE THIS HELPS! (P.S. A brand new cushion (that I've never used) came with my wheelchair (only use my wheelchair to roll myself to the bathroom in the middle of the night). If I can find the cushion, I'd be happy to mail it to you. Hugs Gena

Hi Em, so sorry to hear your body is in so much distress over this. The only way I get through the first couple of days of my period is to take 2-3 Advil every 4-6 hours. It works like a charm with the cramps. I only do this for the first two days and then after that my cramping is pretty much gone. I pee like a race horse too for the first few days just like you are! I start retaining so much water before my period that I think my body has to pee it all out during my period. I agree with everyone else that the heat pads / rice socks are great. Look on the bright side, at least you can deal with it in the comfort of your own home and not have to go to work, etc. I think part of the night sweats and discomfort is your body adjusting to not being supplemented with hormones everyday. So that should eventually get better. Hugs and best wishes, Gena

I have a Scooba (the robot mopper machine), but not the Roomba. I have two friends who have Roombas and they love them. I definitely like my Scooba...mopping is definitely a chore that makes me very symptomatic. I just use vinegar and water in my Scooba (as I'm sensitive to chemicals in most cleaning agents) and it does a great job. It does take about 45 minutes per room though, so I have to do it on a day that I'll be in the house to check on it every now and then, as it can get stuck once in a while, but not often. Over all I'm happy with the Scooba. The Roomba might be next on my list. I'm such a picky vacuumer though, I like to get under couches and in every nook and cranny, so I don't think the Roomba could live up to my high standards! HA HA!

Sunfish - I'm praying that your fever breaks soon and you'll be back at home in your fish bowl feeling much much better. We miss you. You're in my thoughts and prayers. Hugs and well wishes, Gena

Hi Jacquie, I do not faint and I am so GLAD that I don't (knock on wood!) I have come close to it a couple of times when I first got sick a couple of years ago. It's an awful feeling that's for sure. I agree that people might understand our illness better if we did faint, but I'm thankful that I don't. My worst times are always at night after sleeping and trying to go to the bathroom (I have to use a wheelchair to do this, or otherwise I probably would faint or have a raging case of tachycardia and dizziness). I remember a post from a member a long time ago that said her husband became much more concerned and understanding about her illness when she started wearing a heart monitor...as it would alert her when her heart rate got high. Her husband could hear the monitor going off, so I think it made the invisible symptom of tachycardia visible to him. That's what is hard about so many chronic illnesses is that they are invisible most of the time. But the more I think about, the more I'm thankful for that too, b/c when an illness become visible you have an entirely different set of problems to deal with especially in public and the workplace. Hugs to all fainters and non-fainters! Gena

Welcome back home. It's always good to get out of the hospital. it's too bad the norpace didn't work for you. Perhaps they will suggest something else. I know that klonopin helps me with the anxiety and Inderal helps with the tachy/forceful heartbeats and arrhythmias for me. Those adrenaline rushes can be awful. I know many of the beta blockers can help with that, but I don't think they have found anything that prevents them entirely. Putting weight on defintiely helped me with my symptoms somewhat, but it didn't make them go away. Best wishes! glad you are home. Gena

HI. I can relate to what you're going through. For me, the frequency of the anxiety/attacks did eventually subside. They will come back if I'm in a really bad POTs hole! My anxiety anticipatory panic attacks started happening AFTER I became sick with dysautonomia. I NEVER had any problems with it before. I hope you find a med that works. I take Klonopin at night sometimes before I got to sleep and that seems to help.

Yep, I get these freaky almost black out episodes too. Only happens at night when I'm sleeping or trying to fall asleep. VERY scary and not fun! Gena

HI Morgan I haven't been around much either. But it's nice to see an "old timer" posting again! HA! I am so glad that you are getting back to your "normal" self. Have you had any more episodes...If i remember correctly one whole side was going numb like you were having a stroke..did they ever determine the cause? Regardless, I'm just glad to see you back. Hope to see you around more in the future. Hugs, gena

Probiotics may not directly help your gastroparesis, but they offer an excellent protection system in the gut against bacteria, infections and food-borne illnesses. A large portion of the immune system is located in the gut, since this is a pathway for ingested food, a major source of intake of foreign matter into the body. Probiotics help maintain a balanced inflammatory response. The microflora reinforce the barrier function of the intestinal mucosa, helping in the prevention of the attachment of pathogenic microorganisms and the entry of allergens. They also help produce small amounts of certain vitamins. Antibiotic use, disease and aging, can alter the balance of good bacteria in the gut. Studies have shown them to be effective in treating diarrhea, vaginosis, IBS, Chron's disease, etc. good, balanced microflora equals a happier digestive system and better movement through the bowels. However, it won't help with ANS dysfunction! Certainly doesn't hurt though! I take some everyday. Gena

I have fibromyalgia but have never really visited any forums for it. I have just lived with the daily aches and pains and never discussed it with others. Just curious what are the better forums out there for fibro? Thanks Gena

I have a good friend in Ft. Lauderdale who has symptoms of chronic fatigue and MVP / dysautonomia, but she's having a frustrating time getting any kind of diagnosis from any of the doctors she has seen. I live in North Florida and could refer her to a few good ones up this way, but it would be easier for her to see someone closer to home. I have researched previous posts and cannot find any specific names of recommended doctors in that area. She has not seen a cardiologist except for once in the hospital, so maybe if she could find a good cardio who was familiar with dysautonomia or an endocrinologist, that would be helpful too. Any suggestions? Thanks, Gena

Anytime I have a heartrate in the 80s or above it really affects me. So even though "tachy" is normally considered 100 or above, I say tachy when I'm in the 80s b/c my body really feels it. I also get a lot of arrhythmias, including feeling like my heart stops completely, especially when I'm laying down at night. The arrhythmias often happen for no reason or if I eat a large meal or something sugary or caffienated. I use Inderal beta blocker (a very tiny dose) and it usually puts my heart back to normal. My doc told me that Inderal is specifically good for arrhythmias. Gena

Jan/Jeff and Morgan, I echo Emily's sentiments. She has a beautiful way with words and I couldn't have said them better myself. You are in my heart and prayers as well. Hugs, Gena

A cool freezer pack on the back of my neck is sometimes the only thing that helps with my headaches. I know they are just awful! Hugs, Gena

Steph, I haven't been posting very often, but I did just stop in to browse the forum quickly and found your post about going to Maryland to speak. I just want to say that I am in awe of what your were able to do for yourself and for us as a group. Thank you for doing that. You suffered so much in doing this. I hope that your voice was heard and that it made a difference, no matter how big or small. You truly amaze me. Thank you. Hugs, Gena

HI Jennifer, I can hear the sadness and frustration in your voice and my heart goes out to you. I have POTs and function fairly well too, so I understand about feeling how you may not have a right to be upset or complain. But living with dyautonomia in any form certainly takes its toll. I would talk to a qualified health practitioner about possible natural treatments or pharmaceutical treatments for your depression. I think maybe once your hair comes back, then you can find your sense of self again and hopefully the depression will dissipate. Those with cancer who lose their hair go through similar emotions of losing their identity, feeling ugly, etc. and depression can easily set in. YOu mentioned that all of your bloodwork came back fine. Did they test your thyroid, hormones, diabetes? There are many types of imbalances, including a vitamin/mineral deficiency possibly caused by stress that can be contributing to it. In fact you can find specific combinations of vitamin/minerals specifically formulated for hair and nails. I know my health food store carries these combination formulas, but I think even major chains like Wal-Mart and drug stores carry them too. I've pasted a link here that talks about possible causes and treatments. http://altmedicine.about.com/cs/herbsvitam.../a/Alopecia.htm this is a 2page article, so be sure to hit the number 2 at the bottom of the page on this link to read the rest of the article. Hugs and best wishes, Gena

Hi there, gosh, my heart goes out to you, no pun intended! I know how scary and uncomftorable that feeling can be. It's absolutely frightening and it just makes it worse when you're tired from lack of sleep. I had an episode about 9 months ago where I had constant heart flutters, skips, arrhythmias for nearly a week. However, I was finally prescribed inderal and it helped them tremendously. I take the smallest dosage they make and sometimes just take half of that....have you tried increasing your dosage a little bit or talking to your doctor about it? It could be that you just need a little more beta blocker or even something as simple as a deficiency in a vitamin or mineral. Sometimes drinking a little magnesium tea (I use Natural Calm) may help ease the flutters. I would look at your diet, stress, and daily routine to see if any of that has changed recently. Do you also have MVP? I read a study that said women with MVP who exercised moderately for 30 minutes a day had signifcantly reduced symptoms (such as heart flutters, chest pain,etc). I realize not all of us can exercise, but just thought I'd throw that out there. I spoke with my cardio at Mayo when I was having those constant flutters day and night and he assured me that I was going to be okay. I would talk to your doctor, but in the mean time I wanted to send you lots of hugs and I hope you're doing much better today! Gena