Kellysavedbygrace Posted August 26, 2012 Report Share Posted August 26, 2012 One year ago today I had a root canal. Then came a sudden onset of Dysautonomia symptoms that have changed my life. I now operate at about 5-10% of my previous functional level. So today I'd love to hear words of encouragement/advice on what has helped you. I've come to rely on this form as a place to go for advice and wisdom so especially today I'd love to hear from my friends on DINET. I'm wondering what makes you feel better. (it could be meds, vitamins, diet, alternative therapies, etc.) and why you think it helps.For me. The #1 that helps is Saline IV therapy. (but it is so temporary- 24-36 hrs max). I think it helps because no matter how much fluid I drink it doesn't get into my blood plasma efficiently and the increase in volume gives my brain more blood flow. The #2 thing is reading my bible and prayer. (perhaps that should be #1. Quote Link to comment Share on other sites More sharing options...
angelloz Posted August 26, 2012 Report Share Posted August 26, 2012 I am trying to think about what to say. I think mine began with a tetnus shot. About 2 years of not terrible symptoms...then now like you am at about 5% of normal function. Iv fluid helps me as well and like you it is short lived. Today for example every time I try to stand my blood vessels bulge and I have to sit down. I pray each day for acceptance and strength. I will write more later.Angelloz Quote Link to comment Share on other sites More sharing options...
diamondcut Posted August 26, 2012 Report Share Posted August 26, 2012 I think, coming on here, reading people personal posts, reading the real academics on here who post new Research and Mayo clinic info etc, it all gives me hope there are people trying to look for different approaches.Oh sunny days, neck massages and hot showers are temp fixes!!!!! Quote Link to comment Share on other sites More sharing options...
Alaska Posted August 26, 2012 Report Share Posted August 26, 2012 When I don't have to think or mentally process a conversation Quote Link to comment Share on other sites More sharing options...
misstraci Posted August 27, 2012 Report Share Posted August 27, 2012 I'm still trying to figure out what helps ultimately; overall.Of course, when I am overcome with terrible presyncope, I sit, lay, breathe, and pray.When I'm standing in line at a store; I wiggle, move, sway, pace, bend, anything to keep moving or from feeling like I'm going to pass out.Concentrate on breathing deeply, tell myself everything is going to be ok, exercise .... when I have the time and am able. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted August 27, 2012 Report Share Posted August 27, 2012 Kelly, I like you pray all the time and read scripture; I also decided taking supplements (listed below) has helped me immensely, and being proactive in my own treatment after doing much research. Like when I found out I was deficient in D, after asking for them to draw blood specifically for that. Quote Link to comment Share on other sites More sharing options...
Wendy C. Posted August 28, 2012 Report Share Posted August 28, 2012 Salt tabs every 2.5 to 3 hours, salty snacks twice daily, magnesium every 6 hours, midodrine twice daily, alternating Gatorade and water all day-even when not thirsty, thigh high compression stockings, staying indoors if it is hotter than 80 degrees outside and especially if there is no breeze, being careful not to overschedule my day or my week-only leaving the house for errands or get togethers maybe 4 days out of 7 and not usually on back to back days, avoiding activities that involve standing still, and having hope/positive attitude that I will one day get better! I have already gotten significantly better than I was in the Fall of 2011, so it seems to be working! I hope that you can find some things that will work for you. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted August 28, 2012 Report Share Posted August 28, 2012 Strictly avoiding my food intolerances, eating healthy foods (wahls /paleo diet), keeping my sodium levels up and laying down to relieve hypoperfusion. I'm curently trying allergy meds for swelling and possible vasodilation. Tc .. D Quote Link to comment Share on other sites More sharing options...
E Soskis Posted August 28, 2012 Report Share Posted August 28, 2012 IV Saline is a beautiful thing! It definitely makes me feel betterOne of my MD's suggested I try a gluten-free diet- tried that for about 2 months and actually got much sicker. I freely salt all my food and I drink anywhere from 50-100 ounces of fluids daily. I don't tolerate beef well - meat in general must be scant or it sets off gastroparesis-like symptoms. Caffeine is a no-no. Heavy, fatty foods is not good either. I love sweets but, they don't love me. If I pig-out on very sweet treats, I become very nauseated and get a terrible headache. Total volume of food is an issue: only eat a small hand-full at one sitting - any more than that is not pretty. I am used to a range of sizes: I have been as small as a size 3 and as large as a size 14! The past few years, I've settled into a solid 8-10.....so, I'm just happy with whatever the size-d'jour may be!I am like you Kelly - I co-teach Sunday School and spend a lot of time studying the Word - that is my ultimate comfort and my long-term support! Quote Link to comment Share on other sites More sharing options...
Alan-pots-IST Posted August 29, 2012 Report Share Posted August 29, 2012 wow Angellos i to had a tetnus shot before this all started with me. is what seems to be hleping with me, with pots . supplements like ALA 600mg a day and a ton of other supplements. ALA seems to help a lot. when i stated takeing Levothyroxion it did help a lot, sometimes Midodrine can help but not always, its a small window of what it helps with , but it dose and can help. one thing else that seems to help and im not sure why is Xanax 0.25mg i only take ity when when needed sometimes i go a week with out useing it but i can say for sure it dose seem to help. I started takeing antihistamines when my pots is realy bad and i cant set up with out dizzynees seems to help a lot when i realy bad. this pots thing is very very strange i dont understand it, i dont even think the Drs do. Quote Link to comment Share on other sites More sharing options...
jangle Posted August 29, 2012 Report Share Posted August 29, 2012 Exercise (jogging + weights)Massive amounts of liquids.Coreg (A form of beta blocker)I would say vigorous exercise thusfar has made the most improvement. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted August 30, 2012 Author Report Share Posted August 30, 2012 I am encouraged after reading these responses to be more exact and scientific about my fluid and salt intake. And to put more emphasis on the eating, exercise and supplements. My primary doc has just ordered a complete nutritional panel using Spectracell labs (with the caveat that this lab is not well recognized in the medical community.). Funny isnt it? Nonetheless it'll be interesting to see if I have any deficiencies other than the Vit D. Thanks all for your input. Quote Link to comment Share on other sites More sharing options...
Alan-pots-IST Posted August 30, 2012 Report Share Posted August 30, 2012 kelly make sure you look up ALA 600mg and give Quercetin along with Rutin and give them time to work, it my take 24 weeks before thay work. got give up, most people recover some some a lot. So the more you try i think the more chace you have . i think love can help to, wake up with love in your heart. Quote Link to comment Share on other sites More sharing options...
mattsmum Posted August 31, 2012 Report Share Posted August 31, 2012 Apart from the meds I've started to exercise and now i've gone from walking to jogging plus doing weights and toning sessions. Also something I wish i had found years ago. Myotherapy where they use suction cups to move the fluid in the legs to a place in your body that will get rid of it naturally. Its painful but i feel like a new woman afterwards. Quote Link to comment Share on other sites More sharing options...
Sheila1366 Posted August 31, 2012 Report Share Posted August 31, 2012 Sleep, and more than a few hours. Only time there is no pain,nausea,fatigue...etc. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted August 31, 2012 Report Share Posted August 31, 2012 I have to add my Cpap, It has enabled me to sleep so much better....I had very bad insomnia, too, like Sheila... Quote Link to comment Share on other sites More sharing options...
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