L4UR3N

Sorry for the delay in posting! I'd like to answer some of your questions-- hopefully I get them all! If I miss some, just ask again lol . Coconut oil- YES!! I use lots of coconut oil, and olive oil. Those are really the only two oils I use. I stay away from all the rest!!! (including if it is just an ingredient IN something). Medications - I am not on any meds at all, just vitamins (some of which are higher than normal doses) and the minerals found in my water. Diet- as far as the Paleo goes, I should say what I follow could be considered a modification because I do still consume milk and dairy. I was tested a while back for a casein intolerance and was found not to have one. Because of this, I see no reason to remove it from my diet. Your body may be different though and you may be better without dairy. If your not sure, you could always just try it and see how you react. I'd give it at least a month. The biggest thing is really the grains and the sugar. I also avoid corn (which is really a grain), rice, and potato, legumes and peanuts (which are legumes). I do have sweet potatoes sometimes . Heres a sample day (every day is different, but you get the idea): Breakfast: 3 hormone free eggs cooked in coconut oil, 4 slices of hormone free, nitrate free bacon, and 1/2 an avocado Snack: some nuts and seeds with a piece of fruit Lunch: Wild caught Salmon salad (I make my own mayo) over a bed of romaine and kale lettuce. Olive oil and lemon, or vinegar dressing. Throw in some tomatoes, raisins, walnuts, and the other 1/2 of avocado, and yuum! Snack: a piece of fruit with almond butter, and roasted vegetables in olive oil sprinkled with full fat, hormone free cheese. Dinner: Vegetable stir fry in coconut oil with grass fed, hormone free ground beef. Sometimes I use a curry sauce which is delicious! Dessert: A small glass of whole milk (hormone free), and 88% dark chocolate. I really cant emphasize enough the liberal use of fats and the avoidance of hormones in your food (this goes for meat and dairy). I was worried I would gain weight at first, but I have actually lost 30 lbs by eating this way-- even with all the fats!! I dont buy anything low fat or fat free. Basically how it's found in nature is how I try to eat it . Hope I answered all of your questions!

Hello! I know I have not posted anything in a long time, and partly that is because I have been doing much better!! I would like to share with all of you what has helped me, in case it could possibly help someone else too. I dont want to mislead any of you, because I am not "cured" of dysautonomia. My symptoms however are greatly improved, and some days I feel as if I have none at all. My heart still races when I walk up the stairs, and I suspect it always will. I am realistic in my expectations and do not expect to ever be "cured". I have Ehlers Danlos and unfortunately you cant change your genes (....or can you?). I also realize that what works for me may not work for someone else. We are all unique and our causes may be different, therefore our treatments may also be different. I do hope that you will at least give this a fair trail because I know how much we have all already suffered. It is a sacrifice, but if it helps then it is worth it!! What has helped me: I'm not going to bore you with the details of how I came across what I did, or why it works. If you would like an explanation of those things you can message me. Otherwise, this will be fairly straight forward. Just the facts ma'am. . Here we go! * Drinking only natural spring water without the minerals removed. This means NO reverse osmosis, NO distilled water, NO steamed water-- just natural spring water run through a filter. I have to get mine delivered to my house and it is fairly expensive...but not as expensive as doctors bills!! * Eating 100% Paleo 100% of the time. NO cheating. Grains and sugar must be avoided like poison. I do drink a small amount of milk (see below) and eat a small amount of cheese. * Taking a high quality vitamin D supplement daily. If you would like the name and dosage of what I take you can message me. * I'm not afraid of fat!!! I eat plenty of coconut oil and fats from meats such as bacon, pork, steak. Eggs are my best friend (as long as you do not have an allergy). I know I said I wasnt going to explain things, but fats are CRUCIAL for optimal neurological function (this has been proven in many scientific journals and is well accepted throughout even mainstream medicine).. Enough said. *Taking a high quality Vitamin B 12, B1, and B complex Daily. The doses I take are significantly higher than are typically recommended. *Taking at least 1000 mg of Vitamin C daily. Last but probably the most important of all: * ALL of my dairy products (milk, cheese, yogurt, etc) and my meat products MUST be hormone free. Vegetables and fruits must be organic when possible. After implementing these dietary changes I began to feel better within a few weeks (actually felt worse for a few weeks). After several months (about 4) I realized how much my life had changed! Many of my symptoms were gone and I began to actually live my life again. I am able to exercise now, which has further helped my symptoms. I really cannot emphasize to you enough what a dramatic change this has been for me. I really hope that this might help you in trying to get better. Is it hard to live this way? Yes.. it is. It takes planning, motivation, and a whole lot of will power. Sometimes it totally ***** (especially when all your friends are eating pizza and ice cream and you're chewing on an organic celery stick). Is it worth it though?? YES, IT DEFINITELY IS!!!

Flaxseed oil mimics estrogen in your body, and many Potsies seem to have hormonal imbalances. Estrogen imbalance can in turn cause PVC's. Not sure yet if it is too much or too little estrogen that is the issue, though in my own body I seem to have trouble with too little. Progesterone is evil, estrogen is good. At least for now . lol

Ok so I have mold too. Ive known about it for a while (um...years) and just keep cleaning it up as I see it. Now this is really starting to freak me out thinking about how sick this could make me. I have mold in my sink and shower drain (when I remove the drain it is everywhere!). I keep pouring bleach down and letting it sit, but obviously it's coming back. It also was on the wall of my shower, though I really coated that with bleach and have not seen any more in that area since then. We had water in our basement as well as a pipe burst and leak into the basement cealing and surrounding insulation. Pretty sure our basement has mold though I havent seen it. So my question is... short of moving out....what do I do about it?!?!

I got out of it--for now-- by changing employers! lol. I was looking for a new job anyway . This was just an added excuse. It worries me though because this seems to be a growing trend to force health care workers to be vaccinated. Pretty sure it's only a matter of time until my new employer requires it too.

So the real question is-- What is causing all this inflammation?

Well..... I just had an echo (last one was 2 years ago) and I now have diastolic dysfunction stage II as well as regurgitation of ALL of my valves. Thank you for these articles. I'm only 29! Something has to give....

Unfortunately listing egg allergy is an unacceptable excuse to them, unless you have had a documented anaphylactic reaction from it. Apparently even intolerances dont count. ....I really dont see how this can be legal for them to force us to get it!!!

I forsee it turning out badly for them when people DO have bad reactions to it and then sue them

I am definitely prone to bad reactions, and though they say there is no way to get the flu from the vaccine I have seen it time and time again. People get the vaccine and then get sick,...while I never seem to get it without the vaccine, lol. A viral illness also provoked my POTS to get significantly worse. ....and then there is the whole mercury issue. Ironically a high level of mercury in your body can cause POTS like symptoms . Im not entirely sure how they are legally able to enforce it, but they are. Basically if you do not comply then you will be terminated. They will excuse people who either have severe allergic reactions to the vaccine, or who have had Guillain Barre. Otherwise, you are pretty much made to get it!!!

My employer has decided to make it mandatory for all health care workers to get the flu vaccine. I have never had the flu vaccine, and NEVER want it. I am probably one of the rare nurses who believes it does more harm then good (after all, nurses are supposed to encourage people to get it!) What I am looking for is any evidence that it could potentially make POTS or EDS worse. In order to be exempt they need hard, factual proof. Unfortunately they have not given me much time to find this proof, so I need your help!!! Anyone know of any research articles that may be useful?

It is definitely related, though I'm not sure exactly what cases it (as with everything else wrong with us! ). It is a good idea to be tested for sjogrens as well as the small fiber neuropathy, however if you look up Familial Dysautonomia it is one of their main symptoms. While us potsies may not have FD, the dry eyes may be due to our SNS imbalance. Mine were so bad that I had to get punctal plugs. I tried Restasis for about a year prior to the plugs, but unfortunately it did not work. My opthamologist explained to me that Restasis would only work if the cause was autoimmune--guess mine wasnt! The plugs have been AMAZING and I would highly recommend them. It's really the only treatment for any part of my POTS that has brought me some amount of relief .

For those of you who have found beta blockers to be helpful, which one are you taking and at what dosage?

Im so glad to read this thread . I have had PVC's for about 5 years now and just recently started having runs of VT. Quite a different feeling for me than the SVT, though they are both scary. I am very frustrated by my lack of treatment options (beta blockers and calcium channel blockers are out--and antiarrhythmics are not a good option d/t past medications that have evoked arrhythmias). I had an EP study which was not able to produce the arrhythmia. Really the only sure thing that produces it is a change in my hormones (happens every month around the same time!). I wish I could figure it out . I went on birth control pills a while back, but they actually made me have MORE PVCs. I dont know what the answer is, but I am frustrated....and scared .

Taurine seemed like the "magic pill"..... until I took it, . It did nothing to me at all expept for cause an increase in PVC's (which it is actually supposed to decrease according to the lit). I had a run of v-tach while on it and decided enough was enough. Wont be trying it again...

Rama was the hypertensive reaction you had to the Horse Chestnut, or the Butchers Broom?? My integrative med doc wants me to try a Ginkgo/ Horse Chestnut compound.... Kinda worried after reading this, though Im not sure which one you actually took?

I think a massage may be just as useful . The problem is that the effects of these things are temporary. However, it is definitely better for the health of your foot (especially for diabetics) to have good circulation at least some of the time, than none of the time! I haven't seen one of these machines before, so it's pretty interesting. I have one of those rice bags that I heat up and rest my feet on when I am at home--I absolutely love them!

Same. Mine is my left eye and it seems to come and go. I also at times have abnormal pupils. Really not sure what causes it, though I have definite periods of time when it is worse than others. I have looked in to Horners Syndrome, though I do not fit nicely into that diagnosis. (I sweat evenly on my face, and have dilation rather than constriction of the gimpy eye).

Im so happy to have found this post because I was just thinking of joining a local pool to swim some laps! Im hesitant because exercise and I do not tolerate each other very well, but it seems like swimming would be good for both the OI and the EDS. Out of curiosity--when you swim laps do you swim with your head above the water, or do you hold your breath and breathe rhythmically? I was thinking that holding my breath may make the POTS worse, but there are many strokes that can be done "above" the water .

Not sure about a written source, though Im sure if you researched you could find one . I work in cardiac telemetry so its more of a personal experience type of knowledge, lol. Its very rare to see someone with a heart rate over 100 from just standing up. When patients are walking around the halls their heart rates are anywhere from high 90's to 110, but rarely above that. When they exercise its usually anywhere from 115-130. Other factors such as infection, pain, or medications may elevate their heart rates, but I rarely see patients with orthostatic tachycardia (I can count 3 in the past year).

Your diastolic number is very concerning and would be appropriate for the ER. Typically any diastolic number above 120 is considered a hypertensive crisis (this damages organs and puts you at a considerably increased risk of stroke). I know that it can be difficult for us when we have SO many blood pressure swings in one day, however I would definitely look in to developing a plan with your doctor to keep your diastolic number out of the danger zone. I cant give you medical advice, but I know that if my diastolic number were that high I would not hesitate in getting myself to the ER.

Mytwogirlsrox-- normal adults do not go above 100 when standing or walking around. Most are in the 90's while moving around. With exertion most people can get their heart rates up to 130's, but usually they have to exert themselves VERY hard to get it any higher than 150.

Ive never been able to get mine under control. Its sad but it has become so much a part of my life that I am just used to it. Its so normal for me to feel my heart pounding away that I would probably think something was wrong if it actually were below 100, lol. The dizziness, head & neck pressure, and arrhythmic beats bother me way more than the tachycardia. Funny how well we can adapt to some things .

Amazing!!!!!!! I hardly ever hear voices this good even on the radio!!! Keep it up Dana!

As long as it is not dropping into the 80's I wouldnt be too worried. The pulse ox measures the oxygen saturation of your blood. For patients who are hypovolemic the pulse ox is pretty much useless because typically your blood is as saturated as possible (so you will have high readings). The high readings in hypovolemic patients do not accurately measure the actual oxygenation of your body tissues.