Ashelton80

I know I thought the same thing! I have been sick for 2 years and bed ridden for months and months that total up to about a year. I definitely hadn't even thought of working out or cardio in well over 4 years, but somehow my body is managing to do the almost hour long cardio. I still can't believe it. I'm still shocked when I get off the bike. I will say I have never passed out and it hasn't been a part of my illness. Come close a few times, but my bp stays fairly stable. I have what they referred to as "classic" POTS.

Are you saying you were "running" like a runner. Or do you mean basically burning the candle at both ends busy type of "running"? I was active and sleep deprived with a 1 year old when I got POTS, but I was not "fit" in a cardiovascular "work out" type of way. Dr. Levine uses MRI for measuring the size/density of heart not an ECHO. My ECHO was normal as well, but I've never had an MRI.

Thanks! So you have a normal volume? I'm assuming the salt loading doesn't apply to you if that is the case. I know one lady who actually had the iodine "volume" test and hers showed similar to you. Her volume was fine, but her body wasn't getting it to the right places at the right time. Interesting. I refused that same test because I'm certain low volume is a huge problem for me.

Just curious Firewatcher, what did your ANS and ortho tests look like? Tiffany at Dr. Levine's did mention to me that I definitely had "classic" POTS based off of my test results. Basically my 10 minute stand test from Vanderbilt was 80 to 155 within 5 minutes and stayed there with bp running 120/85 with some narrowing pulse pressure towards the end. Valsalva was normal, ECHO normal and QSART showing mild neuropathy in the feet. Those are the only tests I have had to date.

Firewatcher is right on the money. The only thing I would add is the determined heart rate comes from your 10 minute stand test results and your other medical records that you have to send them. I don't think it's super hand picked or exclusive like some believe. I honestly haven't heard anyone being turned down to participate. I also had an abnormal QSART small fiber neuropathy test and I was still accepted. They have you fill out a lifestyle survey because I'm thinking at the end of three months the people who still had POTS still scored higher on the lifestyle survey (meaning their quality of life improved). They may be super busy right now, but it didn't really take me a long time to get my hands on my protocol. If you look on potsrecovery.com like the person above mentioned she has their info posted. It's funny about the infomercial comment because her website is the reason I didn't want to participate in the study. She had it rough for a long long time and wasn't 100% better after 3 months. It took her more like 8 months to get better. I haven't had the issues she had at first. I have only had improvement since after the first week. From hearing her talk I thought I would be back bed bound for the first month, but thankfully that hasn't been the case for me. Good luck!

I am posting this video because I hope that it will be an inspiration to some of you like it was for me. Erina's video just really put a spark in me to really begin the protocol that I had put away on a desk because I thought I was too tired and weak to try it. I started 2 weeks ago and it is difficult, but I have done much better than I ever imagined! I have hope right now that I haven't had in almost 2 years. On another note, I really don't want this post to turn into criticizing the protocol or opinions on the "flaws" of the study. I just wanted it to encourage others as it did for me! ENJOY!

Here is the link.... Hope this works, I'm not very good at linking these at times.

That is incredible TXPOTS! I wish I could be as disciplined as I find myself still taking 2-3 days off and I can tell right now that it is to many. Congratulations on getting off your meds!

There is a lady named Erina that posted a video on Youtube recently. She is basically in remission. I have spoken with her over Facebook several times. She is able to take her kids to Disneyworld, which was a HUGE inspiration to me. Look up the video, she is very inspiring!

Basically the definition of "cure" is the restoration of health. I understand that it is frustrating when it seems you were in great shape when all of this happened, and I have heard that on several occasions. I think exercise can be a huge stressor on the body along with food, etc. especially if not done specifically for the condition. Like I said earlier and someone else said about their MCAD, if I hadn't addressed the food intolerances first I have a feeling my attempts would have been similar to yours. Also, when I hear of people attempting exercise they are usually doing things like walking or eliptical or lifting weights in an upright position. Dr. Levine's protocol does none of this. It is all in a seated position. There is absolutely no way I could do almost an hour of cardio standing, but I can sure do it sitting. I can only speak for myself, but I didn't really get into the specifics of the protocol. I didn't start this protocol because it touted a "cure". As far as I know there isn't a cure for POTS and I don't see one coming anytime soon. The reason I believe this is because to have one "cure" there has to be one "cause". We all know there are multiple causes of POTS to develop. I started it because 1.)Elizabeth at potsrecovery.com was able to go back to work and live normally 2.) Erina posted a video on youtube and she is better and lives a perfectly normal life with her children 3.)Handmadebybunny on this forum claimed she was "almost" normal after 8 weeks 4.) Erina's friend Donna had the same success 5.) Drugs made me worse and I didn't want to take them anyway 6.) The body is designed to move, it is natural 7.) I had no other options and nothing to lose I guess I am looking more for the restoration of my life. If my heartrate when I stand is still not completely normal at the end of this and I am not "cured" in a medical/scientific way, but I can take my daughter to the park and go to dinner with my husband. Go on vacation and take a shower standing instead of sitting, then it was still worth it in the end.

I am not on the forum much anymore, but I did want to add that I started Dr. Levine's protocol two weeks ago. I hired a personal trainer to help for the first month. I am completing the VERY long cardio sessions and am surprised at how well my body is handling this. I was very afraid of the whole getting worse before getting better, but I am very happy to say that I am already feeling the benefits and improving. I did have to address food intolerances and change my diet to gluten/dairy free 3 months prior to starting the exercise. I am positive I wouldn't have tolerated the exercise this well if I hadn't addressed that first. For me personally, the more I focused on wanting to know the scientific reason I had POTS was just prolonging me getting any better. I don't know if my heart is smaller (didn't show up on an ECHO, but supposedly Dr. Levine does an MRI) and I accepted that I may never know the answer and I'm ok with that now. If I have to exercise 6 days a week for the rest of my life to "live" then so be it. If I never get to touch another piece of bread or eat a cupcake (other than gf of course ) then I'm ok with that if it means I can get out of bed and function. It's a sacrifice that's for sure, but it's well worth it. I am more hopeful since starting the exercise than I have been in 2 years! I would urge anyone to give it try!

I have had trouble with hypoglycemia before and the only thing that helps is removing all sugar/grains from my diet. Soda is a huge no no and you have to even look at things like yogurt. There can be a lot of hidden sugars depending on what brand and what type you buy. I focus on protein and fats and vegetables. Foods that keep your insulin levels stable all day. I will have a few starchy carbs like corn or sweet potatoes, but that is about all. My blood sugar issues are almost one hundred percent gone now!

If you read my post correctly you will notice that it says nothing about eating "some" gluten. I do not. I simply said that I don't feel it's necessary to take such an extreme approach. For me personally, I am not going to exhibit symptoms from a tomato brushing up against a breadcrumb. I speak only from my experience, but this is all more of an art than a science. How will I know if I have lingering symptoms? The whole basis of food intolerances/sensitivites is an elimination diet and then re-introduction. Did you do this? I did and I assure you that I know when I have come into contact with it. Most of my symptoms (ie headache, aches and pains, etc) return. Sometimes they return horribly and sometimes they are very mild. It all depends on what and how much I have been exposed to. I just don't sit around and try to poke holes in what works for some. If Elizabeth over at potsrecovery got her life back due to exercise then by gosh isn't it worth a try no matter how "flawed" in someones opinion the study was. Or if I had of taken your advice and not taken the wheatgrass shots because of a slight risk of "cross contamination" then I would be missing out on some amazing benefits. There is no right or wrong way in any of this. I would encourage you take a look at your approach and tone when you write. Using phrases like "blissfully ignorant" when trying to convey a point or having your opinion or voice be heard doesn't usually bode well for most people. At the end of the day, it's all about what works for you and what works for me. And I have far too many other things to worry about than year old breadcrumbs in my toaster, but again thats just me.

Yes I would think it would be dependent on your sensitivity. Dana, if you haven't seen any results or reduction in symptoms from being gluten free for so long then what is the reasoning for sticking with it? For me personally I can see a difference within 2 weeks of going gluten free. My brain fog is reduced dramatically, my ability to handle my POTS is increased and my aches and pains are drastically reduced. I am not Celiac so it isn't necessary for me to take all the precautions of cleaning out toasters etc. It's about reducing the load of gluten on my body. I don't eat any gluten, but if I got cross contamination it wouldn't be that dramatic for me like it would a true Celiac. As far as the wheatgrass I have researched this myself and have found that most wheatgrass is far too young to contain gluten which is what the majority of people are allergic to in wheat. Again, I am not celiac so it's not an issue. I have also found in my personal experience that they are giving me so much positive benefit that I don't care if my research is wrong. I have gotten dramatic results after shots everyday for 2 weeks. There was another girl on the Facebook POTS page having similar results with the wheatgrass shots. I need to post the article (i did on the facebook pots page), but wheatgrass is 70 percent chlorophyll. Chlorophyll is very similar in molecular structure to human hemoglobin. So it helps build red blood cells. Not only that it has detoxifying effects. The weirdest thing from taking them is I have zero body odor. Coming from a person who I always thought I was just way more "stinky" than most people and would need to slather deodrant, that alone is worth it! I'm sure my husband appreciates it anyway. LOL

Oh and I tested negative for Celiac too. I'm so glad I don't always listen to Dr's. If I slip up and get some form of gluten, within 10 minutes I have a headache and little small pains in my arms going up to my neck. It is crazy how much it effects me and until I removed I had no idea how much.

I have been gluten free for a little over a month and I can't tell you how much of a difference it has made in the way I feel. Between that and wheatgrass shots for building red blood cells I am very excited about hopefully continuing to see progress!!

I have absolutely noticed that at times when I get better it's not that my heartrates are back to normal it's that I am what I call "handling" them better. Somtimes I can walk around in the 110's and be completely fine and others I have horrible chest pain, shortness of breath, feeling of passing out etc. It usually has to do with how well I'm taking care of myself through diet, sleep, stress reduction, etc. Who knows.

Greens First is the bomb!!! I love that stuff and it's amazing how well it works and how quickly I feel better on it! That and wheatgrass shots help too!

Hi Sue- Sounds plausible. I'm just trying to apply it. So you are suggesting that our blood sugar is more labile? I have rarely caught highs in myself. Once was during the GTT, it started at 140 then dropped to 50. One other time, it was 110 after eating an apple- is that high? Otherwise mine is always pitifully low, but probably because I'm checking it when I feel symptomatic. You're suggesting that I have highs I don't know about that precede the lows, right? I have learned to avoid all sugar, even in fruit to avoid the lows....so those lows MUST be preceeded by highs. I never had my insulin checked I have real doubts about mine being high as I certainly don't demonstrate peripheral vasodilation. My hands & feet are really cold, deep purple at times with chillblains. I read somewhere that OI patients had unreliable digestion, sometimes super fast- other times pitifully slow- or a combo of both depending where in the GI tract the nerve damage was. Low blood glucose occurred as the body attempted to deal with the erratic release of glucose. Have you ever heard that theory? Julie Keep your ideas coming. I'd LOVE to get to the bottom of this connection I find the first theory very interesting. I have major blood sugar problems especially when I am not perfect with my diet and eat carbs. Carbs are very bad for me. I wear a heartrate monitor and notice when I start to get a little lightheaded and know it's because I haven't eaten my heartrates are usually higher. The minute I eat and things start to level out my heartrates go back to being fairly normal. Well, as normal with Pots. Insulin is our most abundant hormone and you know it has to influence other hormones which influence the function of glands (ie thyroid) which influence other glands (ie adrenals) and then we have a cascading complex problem that "doctors" can't figure out because they are not good at putting the whole picture together. That is my measly theory. So maybe the cure is at the ends of our fork.

I would have to agree with Sandyshell about the rehab and exercise. One other thing that I have recently noticed with my pain levels is food. I am slowyly figuring out what foods my body does and does not like. The typical allergen foods such as wheat (all grains for me) and dairy and two common culprits that will cause me pain all over my body. Sometimes it's achey and sometimes it's shooting and sometimes it's a burning pain, but there are usually triggers. You have to take that food away for at least two or three weeks to get a good idea though.

That's very interesting about the gluten sensitivity. I have tested negative for celiac, BUT I feel horrible basically on any type of grains. About a month ago I started eating organic steel cut oats (supposedly gf) everyday for 2 weeks. By the end of that two weeks my brain fog had probably tripled and I was really depressed! So, I cut that out and guess what it went back to my "normal POTS brain fog" and the "depression" is gone. I also ate a Subway sandwich on wheat bread the other day and about 15 minutes after I finished I had aching and shooting pains all over my body! So, even though I haven't tested positive for celiac my body is DEFINITELY responding to grains or gluten in a very negative way. It is so hard to stay away all the time though, but if it helps my health I am willing to do anything. Can you give me some ideas of what you eat for breakfast? That is probably the hardest meal for gf when you get burnt out on eggs.

I meant replacing it with lots of protein and good fats like avocados, olive oil etc.

I have had very severe syptoms of hypoglycemia. It has never shown up in a random blood sugar draw though. I just think it's the whole hormonal system breakdown that occurs with this type of condition. I have been able to control mine with cutting out grains and sugars. Heavy protein and good fats.

The other forum I read always talks about ferritin and it's role in conditions such as POTS. A Ferritin of 10 is low even though it may be in range. If it is in the range your doctor uses the bottom number is likely 10 and the top is up somewhere around 200 I think. Either way, it's worth addresssing. The lady at the other site basically is in remission of her POTS by treating her low ferritin, b12 and vit d along with some other things like exercise, etc. It's worth a shot maybe 5 % better here and 5 % better there and more functional. I need to get some stuff like that checked on me.

I feel like I have a better understanding now of why the Advil probably helps me. By the way, I haven't taken one since Tuesday night and today I was back to all of my symptoms of chest pain, shortness of breath, coat hanger, etc. I have discovered that these symptoms really cause the most discomfort and contribute more to me not functioning than the actual high heart rates. I can usually keep my heart rates somewhat controlled with salt and fluid, but it didn't seem to do alot for the other. Anyway, the body produces prostaglandins. A "good" type and a "bad" type. The "bad" type promotes inflammation and some people seem to have an excess of it. Advil blocks both the good and the bad prostaglandins. Another way to reduce the "bad" besides taking Advil is by taking fish oil, primrose oil, flaxseed oil, etc. They all produce "good" prostaglandins and reduce inflammation in the body. So, I think my plan as of now is maybe take an advil every other day and start supplementing the oil and hopefully just taking the advil as needed. It really has helped and now I am noticing when I don't take it I get worse.