Gena

I'm hanging in there. The Inderal seemed to help quite a bit, but it put my BP in the toilet! It was 76/48 this morning when I woke up ...and I was very dizzy! I had a few arrhythmias that I felt in the wee hours of the morning and then again after eating breakfast, but so far they have significantly decreased, at least the ones I can feel anyway. Light exercise seems to help it get back in rhythm too. Amy, your sister said it doesn't matter how many you have as long as heart is structured okay (does having MVP count for poor structure)? The NP that I saw yesterday said she was concerned b/c with this many PACs I was not keeping enough blood in my heart long enough, so that is why I was feeling winded and fatigued. The heart doesn't get fully oxygenated I guess. Thanks to all of you for your support. Never had this happen for so many days in a row, so it was a new scary symptom. Best wishes to everyone, Gena

WoooooHooooo! Congratulations girl. Glad to hear you are doing so well. Quite an accomplishemnt on those exercises. Sounds like you are not letting yourself over do it though, which is good. I'm trying to get back at that level and I'm bound and determined to do so. Keep us posted on your progress. Hope your healthy success continues! Gena

I belong to a doodle forum (for labradoodle and goldendoodle owners and breeders) and ran across this post today. The breeder said in her post that she has 10 week old labradoodles available This is an excerpt from her post..."my main concern is finding wonderful homes for these babies, so if you know of a deserving family or another avenue of placement, please contact me. I would love to donate for service training, too" Of course, you would still have to get the dog trained, but sounds like she would donate the dog? click here to see her pups http://www.brewersgoldendoodles.com/AvailablePuppies.html Cheers, Gena

Welcome to the forum. So sorry to hear you are not feeling well. Have you had a tilt table test at all to confirm a diagnosis or any other autonomic tests? I am not sure if they can give this test to children, but you may want to take your daughter to a doctor so she can get a standard autonomic work up too. Also, have you tried wearing compression hose? Many people find them to be very helpful. I only have POTS and not NCS, but I believe that treatments for both are about the same. Hope you can find answers for your daughter soon. Hugs, gena

Hi Lynda, If you are already insulin dependent, then maybe your doctor was referring to the other cardiovascular risk factors involved in this syndrome?? It's well known that if you have diabetes, that this increases risk for heart disease and/or stroke. However, careful management of it through food and lifestyle changes can reduce this risk. Here is an excerpt from the American Heart Association's website on metabolic syndrome... AHA Recommendation for Managing the Metabolic Syndrome: The primary goal of clinical management of the metabolic syndrome is to reduce the risk for cardiovascular disease and type 2 diabetes. Then, the first-line therapy is to reduce the major risk factors for cardiovascular disease: stop smoking and reduce LDL cholesterol, blood pressure and glucose levels to the recommended levels. For managing both long- and short-term risk, lifestyle therapies are the first-line interventions to reduce the metabolic risk factors. These lifestyle interventions include: Weight loss to achieve a desirable weight (BMI less than 25 kg/m2) Increased physical activity, with a goal of at least 30 minutes of moderate-intensity activity on most days of the week Healthy feating habits that include reduced intake of saturated fat, trans fat and cholesterol My mom was dx'd with this too. Basically the doc said to her "you are showing insulin resistance and you are overweight. You need to correct this by changing your eating habits and losing weight before it turns into type 2 diabetes and/or heart problems." Hope this helps! Gena

Amy - I don't take ginseng as a supplement, but there is a very minute amount in the whole food vitamins I take. It doesn't affect me at all. Sometimes I do take a separate astragalus supplement though during periods of high stress at work. Gena

Thanks everyone for your input. The nurse just kind of frightened me because she seemed to think it was urgent that I see a cardio right away. I agree that I should, but I guess I'll have to wait 2 weeks, unless it gets worse, in which case I'll get my butt to the ER! I might call the nurse on Friday and ask for a 24 hr holter monitor, just to make sure they are getting the full picture. Does anyone have a lot burping and indigestion with arrythmias? My husband is just loving the gurgling tummy and belching right now! Well, I just took a 20mg propranolol tablet, so I hope it works and that it doesn't have any bad side effects. The weird thing is that my BP has not been low these last few days and it's been fairly normal, so I am not sure what triggered it. It did start happening after a stressful Monday and then went away on Tuesday then came back Wed. with a vengance after eating a big meal (I hate it when I do that, b/c I always pay for it later..I was just so hungry darn it!) Please feel free to add any feedback. (I took a 1/2 of a Xanax today and that actually seemed to reduce the PACs some, or maybe I was just too loopy to feel them! ) Hugs, gena

Syndrome X is just another phrase for a pre-diabetic state. The best way to treat it before it turns into diabetes is to carefully evaluate your diet. Eliminate sugars, refined carbs, white breads, sweets, pastries, etc. Include more fiber in yor diet as well. Changing eating habits to those of primarily low to moderate glycemic index foods normally turns this pre-diabetic state around for most people. Meds aren't normally required. Gena

Oh Amy, I'm so sorry to hear that you go ill. Hopefully you'll be on the mend soon. I know all about those nasty arrythmias, as I've been having a string of PACs this week that just won't quit and keep me from sleeping. I pray every day that I don't catch a cold or virus b/c i am certain my body would react similarly to yours. I know it takes longer for us to recover and it really takes it toll on our heart and nervous systems. I hope you feel better very soon. P.S. I would think your medicine would have been absorbed by the time you tossed your cookies , but if you're having such strong symptoms, you may want to up your dosage. Hugs, Gena

I think MANY of us here experience the ebbs and flows of being sick/symptomatic. Just when you think you've hit a good spell and that all might be okay with the world for a while, BAM, like you said, you're back to where you started. It is not a fun situation to be in. It makes it difficult to plan things and friends and family are not always understanding. I think my family thinks I'm just a wimp sometimes. I work full-time and recently I got the feeling my co-workers were thinking I am not able to do my job because of my on again off again symptoms. I RARELY EVER miss work, but I push myself too much and cannot tolerate the stress level that I used to be able to. It's very humiliating, and frustrating. However, I still come through and always do a stellar job, but I always pay the price. The ups and downs of dysautonomia are the most irritating thing for me. I feel your pain! You are definitely not alone. It does make me very appreciative of when I'm feeliing good though and I try to do a lot of things I enjoy during those times. Hugs, Gena

Hi everyone, I have MVP and POTS, so I am used to the little flutters in my heart that come and go from time to time. However I started noticing a lot of them this week and last night I could feel the big ones about every 30 to 60 seconds. Very uncomfortable and scary. Some slight chest pain, but I've had much worse. I mostly feel fatigued and like I can'T catch my breath. I went to my GP today (he wasn't in so I had to see the nurse pract.). Anyway they did an EKG and she said I was having an enormous amount of PACs, like about every 3RD heart beat. I realize most PACs are benign, but this is crazy. She was very concerned b/c she said with this many that the blood was not staying in my heart long enough?? She prescirbe inderol, but I had to get the generic form propolanol since the pharmacy was out. She also tried to get me an appt. with one of the cariolgists here in town, but they said their soonest appt. is 2 weeks from now, and that is even after they told the office it was an emergency situation!! Which is so typical from this group of cardiologists. Most people wind up going to the ER in my town just to get a visit with the on-call cardio, b/c there is usally a waiting list of 2-3 months to get an appt. with the regular cardiolgoists at this particular office. Anyway, I am calling my cardio at Mayo in Jacksonville to run this by him and see if he thinks I should come over there for an appt. I am pretty sure he would fit me in sooner than the bozos here! IF YOU'VE HAD PROBLEMS WITH THIS MANY PACS BEFORE, PLEASE LET ME KNOW WHAT YOU FOUND TO HELP, AND DID THEY EVER GO AWAY? (I do not drink caffeine, drink alcohol or smoke -- I do indulge in chocolate, (can't resist) which I know can make them worse) I would appreciate any feedback...Morgan if you're out there, let me know if continuous PACs like this is life threatening?

I highly recommend taking a mutli daily to anyone. Most people simply don't eat a balanced diet and don't get the proper nutrition. As far as energy goes, many of the whole food based vitamins are good for this, as they are more quickly assimilated into the system. And since they are made from cultured whole food instead of isolated vitamins they work together much more synergistically. Some of the whole food vitamin brands include New Chapter (i take this brand because it's GF), Garden of Life and Nature's Plus, Source of Life. If you still aren't finding an increase in energy level, you may need to supplement with extra B vitamins. Also herbs like astragalus and ginseng are good for increasing energy (ginseng should not be used with some medications though). You could also try small amounts of exercise if you can tolerate it to build your energy levels. Good luck Gena

1/2 of .25 mg Klonopin before bed Also, recently started trying 200 mg of natural sam-e in the mornings...suppposed to have similar effect of an SSRI

I don't know if anyone is aware of the Doodle breeds (labradoodles, goldendoodles, etc) These are labs mixed with poodles and golden retrievers mixed with poodles. My husband and I are about to buy a goldendoodle as a play mate for our Charlie, spaniel/poodle mix. I belong to a doodle forum and ran across this link for a labradoodle service dog that's available for adoption. Beautiful dog. http://www.jeaninesprodogtraining.com/rehomeDante.html The doodle dogs are highly trainable, intelligent, gentle, friendly and fairly hypoallergenic due to the poodle in them (they don't shed much at all). Labradoodles and goldendoodles are sought after breeds even among celebrities! Have a nice day! Gena

I take a 1/2 of a .25 mg klonopin at night before going to bed. Sometimes if I wake up with tachy, anxiety or can't go back to sleep then I might take another quarter. It really seems to help me. Once you take it a couple of times your body does not get so groggy or loopy on it anymore. That dopy feeling went away for me within a few nights of taking it. I weaned myself completely off of it for about 4-6 months last year when I was feeling great. Never had any withdrawal issues at such a low dose. I rarely ever took Klonopin during the day. A few months ago, work stress put me in a deep POTS hole and I had to start taking Klonopin again. I am starting to feel a little better and may try to cut back on it soon. I've never really felt addicted to it at all and it's the only med that I take. As people stated earlier, Benzos can work well with some and not so well with others. I don't do great with Xanax, but fine with Klonopin. Best wishes. Gena

I have celiac, which an an autoimmune disorder of the small intestine, and basically affects so many other facets of the body as well. As another poster said earlier, if you have one autoimmune disorder, you are more likely to have another one lurking in your body to be discovered. I am sure I have other automimmune problems. My ANA is always high, but doctors cannot pinpoint what's causing it. Also, Dr. Sawyer in Birmingham wrote an ariticle that speculated that dysatuonomia and autoimmune disorders were most likely linked somehow and that maybe dysatuonomia is an extension of some autoimmune disease. Hopefully we will get some definite answers within our lifetime! Gena

Bamagirl, I've had those exact symptoms before when I've been in deep pot holes. It is NOT fun! But hang in there because it does eventually pass. Hugs, Gena

Wow! That's excellent news. I'm really hopeful that you'll stay this WELL. Enjoy your bike but remember, don't over do it! It's good to hear you are feeling so good. You certainly deserve it. Hugs, Gena

My adrenaline surges and the after shocks only last from say a 10 minutes to a couple of hours. I haven't had 3 day surge before!! Sounds like your body just fell in a POTS hole for a few days! No matter what you call it, it's never fun. I'm glad to know you recovered okay though. Gena

Hi. I have never taken that med, but it sounds like you may want to discuss these scary symptoms with your doctor before continuing this. Let us know how it turns out. Gena

I get chest pains often. Only on my left side. My heart muscle actually hurts sometimes...feels like it's squeezing very hard, as someone else on this thread mentioned. I also have pain where my chest area joins my arm pit and often into my left arm. Often feels like I'm having a heart attack. My cardio at Mayo explained the theory why POTS patients get chest/heart pain and I'm having too much brain fog right now to remember it exactly...something about the heart and a substance/chemical that's released which is the same as that of someone having a heart attack and this substance can cause the chest pain. It was something like that anyway. I'll have to ask him again next time I talk to him. The scary part for me is that I just never know whether to try and ignore it and not panic or if this is REALLY it and I'm having the BIG ONE!! After the pain passes, I am thankful that I didn't go to the ER, but I just never know whether it's serious or not. Very frustrating!! Gena

Futurehope, Stevia comes from a plant and can usually be found in a healthfood store. You can buy the little packets (packaged just like Splenda) or you can the powder in bulk. It is very sweet so just a little bit goes a long way. Here's an excerpt from this website link on stevia health concerns. http://en.wikipedia.org/wiki/Stevia Health concerns and limits on use A European health study found that stevioside depressed the virility of male mice [1]. It has also been reported that steviol, one of the principal metabolites of stevioside, is a mutagen [2]. Based on these findings, the European Commission banned stevia's use in food in the European Union pending further research. It is also banned in Singapore and Hong Kong [3]. Additional animal tests have shown mixed results in terms of toxicology and adverse effects of stevia extract. Stevia proponents point out that stevia has been used by millions of users in modern countries such as Japan for thirty years, with no reported or known harmful effects on humans. Whole foods proponents draw a distinction between consuming (and safety testing) only parts, such as stevia extracts and isolated compounds like stevioside, versus the whole herb. In his book Healing With Whole Foods, Paul Pitchford cautions, "Obtain only the green or brown [whole] stevia extracts or powders; avoid the clear extracts and white powders, which, highly refined and lacking essential phyto-nutrients, cause imbalance". In 1991, at the request of an anonymous complainant, the United States Food and Drug Administration labelled stevia as an "unsafe food additive", and restricted its import. The FDA's stated reason was "toxicological information on stevia is inadequate to demonstrate its safety" [4]. This ruling was controversial, as stevia proponents pointed out this designation goes against the FDA's guidelines, under which any natural substance used prior to 1958 with no reported adverse effects should be recognized as safe. After stevia was banned, several of members of the FDA board left their jobs. They were all hired at the Nutrasweet Company (a Monsanto subsidiary) in higher pay jobs, according to National (government) records. This has been criticized as a legal bribe by Nutrasweet to the FDA, to ban Stevia (then Nutrasweet's main competitor) in the U.S. In 1995, the FDA revised its stance to permit stevia to be used as a dietary supplement, although not as a food additive. Currently, it is legal to import, grow, sell and consume Stevia products in the United States if it is contained within or labelled for use as a dietary supplement. You can buy Stevia products at such U.S. oulets as Whole Foods, General Nutrition Center, and other stores that carry natural foods. Similarly, in Australia and Canada, stevia has been approved only for dietary supplements. However stevia has been grown on an experimental basis in Ontario since 1987 for the purpose of determining the feasibility of growing the crop commercially. Good Luck! gena

I agree with the others about calling your doc's offfice and explaining your situation. Also, can you qualify for medicare/medicaid? I hope you find a solution soon and that you don't end up in the ER!! Hugs, Gena

Many people are sensitive to Aspartame, Saccharin and Splenda even in very small quantities. It certainly doesn't hurt for your husband to eliminate it from his diet for a while to see if his body responds positively. Personally I try to eat as naturally as possible without artificial sweetners, flavors, etc. and just stick to foods that's haven't been fooled around with by man! We never know how chemicals respond in our body especially when they're mixed with other chemicals and toxins that we expose ourselves to on a daily basis. Thomas - as far as chocolate goes, there are several yummy chocolate bars at the health food store that follow the fair trade act - Rapunzel and Paul Newman are two of many brands that do. Gena

Wow! This sounds wonderful. I bet it's not available in all places yet though. Thanks for the article. Holter monitors and event recorders don't usually pick up anything on me either. I seem to always be wearing them during a good spell!! Gena