Gena

Hi Tearose, Wow, it's been a looooong time since I've posted here, but thought I'd stop in and see what's going on. Unfortunately I can TOTALLY relate to your poor sleeping spells and high HR. It's one of the worst feelings in the world. I also get arrhythmias in my heart...and the longer I go without sleep the worse it gets. I'm just a dysfunctional mess during the day. Brain is mush. Since I was dx'd with dysautonomia several years ago, I've taken 1/2 of the smallest dose of Klonopin they make at bedtime. I do not take it every night, and I'll go for months without taking anything at all. However, when my ANS is out of whack or I'm stressed out the Klonopin is a life saver. For the past several months I've been out of my Klonopin prescription so I have tried taking a very small dose of my Inderol beta blocker before bed. This seems to help calm my ANS too. I have tried natural sleep aids. Melatonin helps me sleep but I found it seemed to make my arrhythmias worse if I take it for more than one night in a row. 5-HTP or Tryptophan are helpful natural alternatives you might try as well. I'm sending hugs and the sandman your way! Gena

I get this symptom often. I attribute it to be anxious about something and not realizing how tight my diaphragm has gotten. I get weird sensitive spots on and around my rib cage and sternum too. I found that lying down on top of a rolled up towel (or very small pillow) under the middle of my back and doing some breathing exercises helps those muscles relax and opens your heart. (The rolled towel is positioned on the back so that it opens the chest and pushes it upward and forward). I read about this in one of my health magazines. I try to do this and other relaxation techniques first. If all else fails, then I take a small amount of Klonopin. I had so many cardio tests b/c of the pain. Sometimes my heart will actually hurt from squeezing so hard and I'll get very localized pain from that. But most of the time it's just tightness in my ribs and chest. Hugs, gena

Bump... Can anyone with cardia knowledge provide me any insight on this? Thanks!

Lena, I weigh less than your boy does, but I started out at 30mg, then went to 60mg and now I'm at 100mg per day. I take Vitacost brand. Here is the link http://www.vitacost.com/products/ToCoQ10.cfm Very absorbable and they have great prices and high quality. Gena

Melissa, My heart and prayers go out to you God Speed! This may sound a little new age, but just try to visualize your body(or God or a warm, white light, whatever you prefer) attacking or dissolving the bacteria that's causing the sepsis. In you can muster the time or energy, focus on this frequently several times throughout the day. Also, you may want to focus on a time when you were perfectly well and healthy. Remember what it felt like, what you looked like. There is so much scientific evidence now that proves we have a profound influence over our bodies - positive visualization really does work. Our body naturally wants to heal itself. Our cells are greatly influenced by our thoughts and emotions. Our thoughts send out different chemicals in our bodies, and our cells receive and act upon them, which in turn influences our organs, immune system, nervous system, etc. t's so easy to focus on everything that is going wrong, especially when the simple act of living takes such a tremendous effort. I admire you for facing the possibility of death and for maintaining a sense of humor and kindess through it all. I know you must be simply exhausted from fighting this, both physically and emotionally. But as everyone else has suggested, miracles can and do happen. Hey little fish -- if you are not ready to quit swimming yet, then don't!! You have been an inspiration to me and hundreds of others on this board. One website to check out if you have a moment http://www.brucelipton.com/store/biology-of-belief You can read some excerpts from his book online. P.S. Did you ever get my PM I sent about the use of L-glutamine against sepsis? I pray that you are free from this sepsis very soon. Sending so many hugs and healing thoughts, Gena

HI everyone, I went to the ER about 2 weeks ago after having chest pain for two days that wouldn't go away. It would subside during the day, but get worse at night when I went to bed. This was a little different than other chest pain I've had in the past. It was definitely confined to the left side of my chest, sometimes radiating in left arm and in my back along my shoulder blade. I had no nausea or sweating, but it hurt worse any time I took a deep breath. My heart was squeezing hard and going along at a pretty good beat. I could not sleep. At the ER, All blood work and my EKG was normal. The ER doc tested my cardiac enzymes, which can indicate a heart attack and heart muscle damage. My CPK was normal. = 76 My CKMB was normal = .9 My Troponin I was .06 (normal values according to my lab printout indicate anything above .04 is high/abnormal) I plan to see a cardiologist soon, but wanted to know if anyone has any knowledge of this or if you have ever had elevated cardiac enzymes without myocardial infarction (heart attack). The ER doc did not seem concerned at all about my Troponin levels and did not even suggest that I follow up with a cardiologist!!! Thanks for listening, Gena

Tearose, I am sorry that you are in such a deep place right now physically and emotionally. I understand completely about the FEAR part and worrying how the illness affects the marriage. I live that every day. I hate to express any of my fears to my husband. In regards to your statement about "I need the living with chronic illness and maintaining a healthy marriage helpbook. " I have not read any books specifically on that topic, but I'm sure someone on the board has. Maybe after we ponder, meditate and read some books to gain further understanding and insight about how to deal with this, then the "E" can stand for "enlightened!" I hope you have a blessed day. Hugs, Gena

Tearose, I can't tell you how wonderful your thoughtful message made me feel. It's so good to see you post as well. I know both of us kind of drifted off the board for a while. I am sorry to hear you are going through a rough patch too and sorry for your losses. My husband and I moved to north Georgia in early summer and we are going to move AGAIN soon (just an hour up the road this time though). I think that leaving my job and friends and family in Florida and having to find new ways to earn an income up here caused too much long-term stress for me. In a nutshell, I've had been doing fairly well in spite of all the upheavels - until now. My body decided to crash. But this too shall pass! You've always had a knack for putting beautiful and caring thoughts into just the right words at just the right time. Thanks for thinking of me. I'm going to clean out that inbox of mine right now, so feel free to email any time! P.S. Hello to all the other "old-timers" on the board. It's always good to come "home" again to visit with friends. Gena

Studies show that women taking synthetic estrogen alone have a 30-40 percent increase of developing breast cancer. Estrone is the main estrogen type in Premarin and is much stronger stimulant of cell growth (i.e., cancerous growths) than estriol. Human estrogen is composed mostly of estriol, which is regarded as the weak estrogen that does not cause cells to proliferate as readily as the other forms of estrogen. Studies also show that women on combined (Premarin and Provera) HRT are more likely to develop blood clots (stroke) and have a much higher risk of gall bladder disease and uterine cancer. The longer you are on these hormones, the greater your risk!! I work in a nutrition store and we have many menopausal women who find relief with the natural progesterone cream (at small doses every day) used in conjunction with the natural estriol cream (they use 2-3 times a week). Black cohosh is also good for hot flashes and night sweats. Waterbaby - I had the same situation happen. I have also taken the natural progesterone cream by itself (to alleviate PMS and fibrocystic breast symptoms) and it caused a flare up of symptoms. A nutritionist recommende I try pregnenolone instead (which is the pre-cursor to all hormones). So I'm going to try that. I'm all for taking bio-identical and natural hormone therapies rather than the synthetic. Suggested REading - Before the Change by Ann Louise Gittleman, PHD and CNS (great insights to natural therapies for women in perimenopause and menopause) gena

Just wanted to add, that some research show that too much dietary salt MAY leach calcium from bones...so if you have low bone density, just make sure you are getting plenty of calcium and Vit. D (both essential to bone health). Increased protein MAY create a more acidic environment in the body (it's best to be more alkaline), so be sure to eat lots of fruits and veggies to that are more alkaline. High protein diets are not good for those with kidney disease either. I used to eat hardly any meat and now I eat a lot more animal protein and fat in my diet and feel much better. Gena

Linda Joy, I had your exact same symptoms after eating and went to many doctors about it. One neuro I saw said I was just overly anxious and prescribed Xanax. I wanted to scream at him. This was about 6 years ago. Many many doctors later, I was finally dx'd with celiac disease (gluten intolerance). When I went on a gluten free diet, these symptoms went away entirely. With you having so many food allergies and POTS, it's a possibility you might have celiac too, which is an autoimmune disorder. It can be triggered later in life by stress, trauma, surgery, etc. (mine was triggered by major stress). You may want to ask your doctor to do a blood test (it tests for gliadin anitbodies). This would help determine if gluten might be the culprit. Normally food allergy testing would not reveal if you had an intolerance to gluten. Best wishes, gena

Hi Tammy, I started taking Di-ribose about 3 weeks ago (it also has magnesium and malic acid in it). It does help with energy and does ease my aches and pains. I also take a low dose coq-10 and l-carnitine separately but not every day. I do not notice any BP lowering effects with the Di-Ribose. My body seems to tolerate it and like it. Gena

I get this often Mary. Welcome to the board by the way. There's another post on here somewhere that talked about this recently. My carotid artery on the left side of my neck will sometimes feel like its going to burst. There's just a lot of pressure feeling. I had a carotid ultrasound and everything was normal. I think I read somewhere that the arteries will expand when trying to force blood to your brain if you aren't getting enough bloodflow/oxygen to your head. So my pain normally comes when my blood pressure is low. It's kind of a scary feeling though! Gena

Hi Maxine, I have to be very careful what I eat and how much I eat or otherwise I get symptomatic too. My main symptoms are tummy bloating, very slow digesting, burping and a very forceful heartbeat, often with arrhythmias. It can take up to a few hours for me to feel better sometimes. I really have to eat very small portions throughout the day and limit refined carbs and sugars. I basically don't even eat them anymore. If I eat too much meat protein in one setting that will set me off too. Yes, you're correct that a lot of it has to do with abdonminal pooling. Sharp rises in blood sugar can stimulate our symptoms too. I'm so sorry you're going through such a bad time. I know others on the board who have the pooling in the legs and they get dark when showering too. My veins poke out all the time. I hate it! Maybe you and hubby can take turns cooking --- or you can order out once in a while -- or cook up a big crock pot of something that will last for several days, so you don't have to cook every night. Best wishes, Gena

Tammy, I was anxious and all worked up before I had my test, because I'm so sensitive to meds. However, it wasn't bad at all. I really didn't feel anything. Good luck, Gena

Hi all, I will be moving to northeast Georgia in 2 months with my husband. I looked on the POTS PLACE physician list and there are NO physicians listed in Georgia who know about POTs...YIKES! We will be living about 90 miles from Atlanta, so surely there has to be some docs there who knows something about POTS. If you've had any good experiences with any docs (cardios, endos, general, naturopathic, etc) in north georgia area, please share with me...Thanks for your help. Hugs, Gena

Hi Tearose, Wow it sounds like they're going to put you through the ringer! But, hopefully you'll get an excellent idea of where you body is acting up and where it's not. I know it's grueling but how wonderful that you are able to have access to these top-notch tests and doctors and that you are able to take time off to do this for yourself. I went to Mayo in Jax and could only stay about 4 days so I did not get the full gamut of tests I should have. I had the basics, but wish I could have stayed longer. It is definitely tiring though. Hang in there and thanks for reporting from the land of OZ. I hope you find some answers and that you have some ruby slippers to get you home safe and sound. Hugs, Gena

Hi and welcome to the board.. it sounds like you are going through a rough phase of this crazy condition right now. I hope it will get better for you soon. Many people have been bed ridden and are now able to function much much better, so don't lose hope! I was wondering if you've ever had your adrenals tested or your thyroid? The endocrine system and its various glands and hormones greatly affect our autonomic systems. Also, just curious if maybe the propanolol could be contributing to your weakness? If you take less of it, do you get severe tachycardia? Beta blockers can certainly cause weakness and fatigue...but so can dysautonomia! Just a thought. Florinef is often one of the first drugs doctors try to help raise blood volume and blood pressure, so it is certainly worth discussing with your doctor. Procrit is also another drug that has had success in raising blood volume and pressure. You'll find a wealth of info here. Glad you found us. Hugs, Gena

I cried when I read your post and saw that wonderfully sweet picture. My two dogs are my children. I had to put my 14-year old poodle down several years ago and it was the hardest thing in the world but I knew it was best. He had congestive heart failure. I still dream about him often. My heart goes out to you in your time of grief and sadness. Lots of hugs, Gena

Brown rice is better in that it has the original nutrients, minerals and vitamins in this whole grain form, vs. the white rice which has been stripped of nutrients and then some of them are added back in. Brown rice does not cause the blood sugar spikes that white rice can. Brown rice takes longer to digest and has a lower glycemic index rating than white rice (which is a good thing). The dried cranberries will definitely make this higher on the glycemic index due to the sugars in them though. Adding the cinammon though can help control insulin levels and keep blood sugar on an even keel. So overall, you are making a very healthy dish. And if it's giving you energy, that's great! I rarely ever eat white rice. I eat brown rice all the time though...yummmm. Here's a little info on brown vs. white rice. Brown Rice - Wikipedia Gena

Radha, I get a pain / pressure feeling in the left side of my neck where my artery is if I get over heated or often when I'm blow drying my hair. I have to sit or lay down and prop my feet up in order for it to go away. Sometimes I feel like the artery is going to burst or something. Very scary feeling. Gena

Not sure if this helps, but this is what I know... The adrenal cortex produces a hormone called aldesterone - this hormone inhibits the level of sodium excreted into the urine, maintaining blood volume and blood pressure. Gena

Melissa you are in my thoughts and prayers every day. I can't imagine dealing with everything that are going through. You are such a fighter. Keep thinking positive thoughts and remember that we're all cheering for you to get back home to a healthy fish bowl. Hugs, gena

Stacey, I had similar tests as the others mentioned with my EP at Mayo in Jacksonville. I really think very highly of Dr. Kusumoto at Mayo. He is an EP that is familiar with POTS and has an excellent knowledge of the heart's electrical funciton. He has treated POTS patients. He's very personable and patient and listens to everything you say. Regardless of who you see, I hope you find some answers and get relief soon. I'll keep you in my thoughts and prayers! Gena

Nikki, I'm sending you lots of hugs and positive thoughts. I know we can't be there for you in person, but know that we are here for you whenever you need us. I know the ups and downs of dysautonomia can definitely take their toll. Maybe you can find someone you can talk to for support within your family? Or maybe a close friend? I am sorry you lost your soulmate. Feeling depressed or lonely can certainly stress the body more and decrease its ability to run at its optimal level, so like Tearose said, be good to yourself. It might help to find someone you can lean on during this difficult time. There are even counselors out there who specialize in helping people cope with chronic illnesses. Whatever your course of action, I hope you feel better soon. P.S. Whenever i'm feeling really down, I love to lose myself in a good book or watch a funny movie. Laughing releases wonderful endorphins that are great for healing and relieving stress. Gena