Ashelton80

I heard about this girl. I think it's amazing she got results so quickly. Wish that would have been the case for me after spending 5 grand.

I wholeheartedly agree with you Jangle as I have had the same experience!! Keep up the good work, it's so awesome to be able to do things that you haven't done in years!!

Your welcome i hate bananas! Yes, I am continuing to do the at home program every day. I just got finished actually and have a headache now..haha. I don't think my brain is accustomed to having much oxygen One other super funny story I have to share. I grew up in a really small town in West TN. Like 5,000 people total and a couple of stop signs. My mom posted that I was going to the POTS treatment center in Dallas. Next thing I know it's going around town that I'm in rehab for marijuana!!!!! LOL My husband said he wished that was the case because it would be more fun. The joys of nosey people. I don't live there anymore btw.

I actually just got home Friday from completing the 2 week program at the POTS treatment center in Dallas with Dr. K. At this point in time I can't see any major improvement from the program, but was encouraged to continue the at home program every day which I am doing. While I don't think they have claimed to cure anything, they do seem to be more eager to share charts of patients who have rapid symptom decline in that 2 week period. I doubt they will be posting my 2 week chart as it really didn't look much different than the first week. Actually, because I was starting my period the second week things got a little worse. The trip was VERY expensive and is a long time to be away from home. Especially when one has a child. I still feel like it will be a valuable tool in my box to manage POTS. I also did speak to a few girls doing the in town program who are doing 90-98% better and live normal lives. That was worth the trip alone. Not one of them is using biofeedback alone to treat and manage the complex condition. Exercise has shown to be more effective for me as far as time goes. If I take two weeks to really hit the gym and work out hard, I get a much better result than I did with 2 weeks at bio. Put the two together (exercise and bio) along with diet, salt loading and getting adjusted by my chiropractor I honestly don't see why I can't get close to 90% or more. I got very close last summer with just exercise, diet and getting adjusted. I think it's important for everyone to find their pieces to the puzzle and stop worrying so much about a "cure"or whether people are claiming a "cure". There's not one and likely won't be one. I didn't got there expecting to be cured after 2 weeks. I know enough about this condition that it takes time with anything I do. This type of training would be valuable for anyone with the stressful world we live whether you have POTS or not. So, do I think it's worth it? I'm not sure yet ask me again in a month, but the only thing lost is $$. Oh and don't be fooled that you think if your insurance doesn't cover something it must not be legitimate. Insurance companies don't give a flip about you or your health for that matter. They are concerned with their bottom line... period. Hope this helps.

I agree with the poster above. I had a consultation with a holistic dentist to remove 2 amalgam fillings and came out with 8,000 dollars worth of work to be done starting with dental planing/scraping with anesthetic. I looked at my husband and wondered why I had bothered going to the dentist in the last 28 years if it all just needs to be replaced. I went back to my regular dentist and he said the normal cleanings were just fine. I am now very leery of dentists who try to push unnecessary procedures. Especially with having an underlying condition, unless it is absolutely no doubt needs to be done I won't do it or I put it off until I feel strong and confidant that it won't set me back.

What is this Z/z diet you are referring too? I have the weight loss/ muscle atrophy and I scare myself looking in the mirror. This is all after a month of my aunt coming in and cooking for me and eating heavily for the last month with zero weight gain. I cannot gain a pound. I do react weirdly to certain foods. Some of them I have noticed in the past are eggs, kale, certain meats that are several days old (gave me heart palpitations) sunbutter, grains, even avocados at one point. Certain foods don't bother me for a while, but if I eat them everyday I seem to develop an intolerance to them. I am at my wits end with food. I know I need to eat to survive, but it's getting to the point where I don't know what to eat and I'm scared to eat anything. I have never broken out in hives or anything major. Would over the counter anti histamines help any of this? Does this sound similar to what you went through? Thanks

I am the SAME way. I have always had a pattern like that. Even though I do have more pooling in the evening my OI and how I feel is so much better at that time. I've always just thought maybe it was the normal pattern for most as the sympathetic system gets activated in the morning to wake us up and then slowly declines over the course of the day until we go to bed. I've thought Im just hyper sensitive to a normal wake/sleep pattern that most usually don't feel. Who knows though.

When I was in the ER a few weeks back with a really bad POTS flare my blood work showed low potassium and high sugar at 206. I hadn't eaten anything that day. I think it's normal the rest of the time though.

Ok ladies I'm sure I'm not the only one, but I have had it with my menstrual cycle. I will bleed 6-7 days so basically as soon as I'm finished guess what? Yep it's time to do it all over again. I just feel like it's starting to be unacceptable to only have maybe 2 weeks out of the month that I'm not bothered by fluctuating hormones and trying to keep my blood volume up while battling a heavy flow. Has anyone tried the IUD? My best friend has one and she only spots every now and then. I normally want to stay pretty natural as I get nervous about anything in me that isn't supposed to be there or that is supressing things that my body is designed to do, but i'm just at a point where I don't care anymore.

Oh trust me, I don't plan on chugging any kale juice again anytime soon!! Although weirdly today my standing heartrates/faintness are better than they have been the last few weeks. LOL I'm not even gonna continue to try and figure out. I think I'll go loco!

Have you ever thought since they use ALA to detoxify the body that maybe if the dihydrolipoic acid is more potent then I could be having a strong detox reaction?

Oh yeah I tried zoloft and it was horrible! Back in the day if I woke up with crazy nervous system problems I would take a quarter of a xanax and that would usually calm me down enough to go back to sleep. I haven't needed them since the fall of 2011, but am thinking I may need to get them back out. I definitely always try to listen to my body, but honestly it just makes me more confused than anything. My husband always tries to dismiss me when I tell him health foods like chia seeds and kale are causing a negative reaction in me. I'm thinking at this point I'm just gonna quit trying to be so healthy! It has only backfired lately!!

Yep, if it happens to me it is usually close to when I start my menstrual cycle. The only other time was when I ate a ton of Fage yogurt. I am very allergic to dairy. It is an awful feeling! I know it's my crazy nervous system, but either way it's not fun!

Thanks Issie! I haven't been diagnosed with anything other than POTS at Vandy 2 years ago. I'm not even sure they differentiate between classifications of the disorder there. I don't do a ton of research so I don't even understand the difference between low flow, etc. I have higher bp's too and excessive sympathetic response to what seems like everything. Have you found anything to help?

Is is possible to be allergic to kale? I am starting to notice a trend here. A couple of times last year I would go to Whole Foods and drink a green lemonade (kale, apple, lemon). After I would experience a ton of bloating and gas. Naturally I quit. A few weeks ago I thought I would try it again since it is supposed to be a super food. I started juicing kale, celery, apple and lemon every morning for almost a week. Coincidentally (or not) I crashed big time right after. Was too sick to juice and had taken a few weeks off. I found a local small business that presses their juice and will deliver it to your home. Perfect for me! I took out the one with kale, collard, lemon and apple and drank about half of the 16 oz. This was around 4 pm and I noticed some mild tension in my head. I ate dinner and overall had a pretty good day. I drank the remainder of the juice at bedtime. Within 30 minutes I was having stabbing almost searing pain in my quads and then the pain spread to almost my entire body. It caused major tension all over and of course I didn't sleep at all. Around 2 am started the autonomic stuff with sweating and trembling. This morning I just feel like I've been hit by a truck. HELP what on earth could this be??

Yes you do. It happened to me. BUT I stopped exercising end of June last year and I didn't start declining and having symptom return until December. So I had about 5-6 months "built up" per se before I started going backwards again. I just look at it now as I would rather exercise everyday as bad as that suck, laying in this bed as I am right now ***** way worse. I just hope I can keep telling myself that when I get better again.

For those of you with EDS, did you have all of the bendy joints in your fingers, knees, elbows etc? I was reading last night about it and the only criteria I meet are flat feet (which hurt and drive me crazy) and premature rupture of membranes in pregnancy. Not sure if that would be enough to warrant a biopsy. I don't have any hypermobility or pain in any of my joints at all. The other thing I wanted to mention is that the first 2 weeks in April I am going to Dallas to the pots treatment center and doing Dr. K's 10 day biofeedback program. She has some very encouraging testimonials coming out of there if you want to check it out. I am hopeful between excercising (which has already shown to be beneficial) the biofeedback and starting licorice root that I will get very close to 100 percent. Trying to have some faith. I'll keep everyone updated when I get back!

May need to go get some fluids from the ER. I had to do that last week after 2 bouts of a sinus infection and then allergies from everything blooming. I just couldn't keep up by mouth.

I've had neck issues as far back as I can remember. Even as a child. I'm married to a chiropractor. 9 out of 10 people he x rays have lost their cervical curve which can put tremedous pressure on the spinal cord. The adjustments can definitely trigger tachycardia because I am so hypersensitive. I had to switch to a different more gentle technique called Atlas Orthogonal. It has been life saving for me and a big piece of the puzzle to doing well. I don't believe for second that bulging disks, loss of curve, subluxations etc have nothing to do with autonomic dysfunction like some of those MD's said. I've seen firsthand how my neck effects me physically.

I have this problem as well. It's not from nausea either, it's just a lack of appetite in general. Especially when I have excessive sympathetic drive. I am underweight and mineral deficient. I am also finding signs of malnutrition on my nails. I have these things called Beau's lines on my both big toenails. Looked it up and its a sign of systemic illness and malnutrition. Fabulous I also do better on a gluten/dairy free diet, so trying to stay off of those two things and gain weight at the same time is nearly impossible!

Anyone know personally someone who has tried the POTS treatment center in Dallas? I have a friend who just started this week and told me about them. They have some good testimonials from POTS patients. The only draw back is you have to stay there for a minimum of 10 days. My family really wants me to go for it, but obviously there are a ton of details that need to be worked out. When I spoke to the girl about info she said they are getting excellent results from the exercise programs from either Dr. Suleman or Levine and biofeedback together. They work very closely with both Dr's and are geting referrals from both. Exercise has already proven very beneficial to me, so I am hopeful this may be another treatment that would get me close to 100 percent.

I would love to hear your experience with Dr. Suleman. I am debating right now on going to Dallas for 2 weeks to do the intensive biofeedback program for POTS. They work very closely with Dr. Suleman and Levine and offered to set up an appointment with him while I was there if I wanted further testing done. I'm not sure if I do or not. Not convinced it would really make that much difference. What testing does he normally do?

I don't have a great answer for this, but I am always very careful and avoid anything that acts directly on the central nervous system. I have put off having my amalgam fillings removed because I am even worried about the local anesthesia.

Thank you! I found this very informative. Did they give you recommendations on how to get 10 grams/day? My Vandy doc only suggested 3 grams and it's not nearly enough. I guess I'm curious if they encourage salt tablet use or not? Congrats on what sounds like a successful appointment! Ashley

Schorobi I have never had a low reading. Of course I only get my blood drawn about once a year. Mainly I just have symptoms. Not all the time, just every once in a while if I eat something high glycemic like pancakes and syrup. So I think I have what some people say is reactive hypoglycemia. It's almost like if I don't eat anything at all, it's better than eating something with a lot of sugar. Two hours later I'm crashing. The "adrenaline surges" or "storms" are the worst. I actually just got finished having one for 2 hours just now. I had a bad gastro flare (diarrhea) and it's next to impossible for me to keep up by mouth. I shook for 2 hours straight and my highest bp was 155/95. Very high for me. Took Immodium and I chugged 2 salted chicken broths, 2 pedialytes, 3 plain bottles of water and a gatorade. Finally my body has calmed. What a NIGHTMARE! I thought for a moment I was going to need to go get an IV. I do everything in my power not to go there! I've only been one other time almost 2 years ago, but I cannot stand the hospital. It's also hard to know if later when I feel better if I should attempt the bike, or wait until tomorrow and let my body rest. ugh I'm seriously reconsidering trying the florinef. .