SeattleRain

Gluten comes from grains so in a nutshell you're just going grain-free for the most part. I avoid bread, anything with a refined flour/grain in it (anything that comes in a box or bag, like crackers, most likely is going to contain refined grains), rice and starchy vegetables like corn and potatoes. The only exception for me is an organic brown rice cake with some salt on it (usually each day, unless I don't want any) If you're used to eating a lot of grains the first week is going to be the toughest. If you can make it without cheating for at least 2 months your cravings should subside. A candida problem can cause horrible sugar and grain cravings, among other things, btw. The toughest part is going without PIZZA.

How much water do you drink? I get like this if I'm dehydrated. Starting in the morning, I take my gallon of spring water and chug down maybe a 5th or 6th gallon of it. I'll do that again a few times throughout the day and inbetween I'll be drinking a few "cups" of it every 20 - 30 minutes or so.

Good questions, Issie. I made sure before going out that I drank a bunch of water - so I know for at least the first couple hours I was hydrated. Past that, I made it a point to refill at the water fountains at the mall but not sure if it was enough (it should have been). I did wear my compression stockings although after the first week they've felt less tight (maybe losing elasticity, but I'm also losing a bit of weight) and can't notice them helping as much. I've been slacking to get an abdominal binder - I should get one soon... I'm not sure if it's blood pooling - it'd be nice to know.

I'd like to see if anyone else experiences this... Last Saturday I went shopping at the mall for Christmas gifts and walked around for a good 5 hours. I was walking most of the time (not just standing looking at things). I noticed my heart racing a bit but it didn't bother me to the point I needed to stop. After getting home, my heart rate remained the same (like 120bpm). Then bed time, heart rate still the same (around 100 - 120bpm). It was like my body still thought I was walking around really fast. I stood up from laying down and it felt more normal than it should have, like my body was already exerting itself for walking around. Anyways, fast forward to today and same thing. Walked around for about 5 hours again. Get home, take a shower, 135bpm just standing. Propped up in bed, 90 - 100bpm. Now lying down with a pillow and my knees up - 88bpm. This is unusual for me, since my resting heart rate is normally around 60. I can "exercise" just fine, going up to 160 on a bike for 30 minutes and not have this happen - but standing up/walking around for 5 hours really seems to mess me up. I have to wait until mid January to get my TTT - I wish I could just get a really solid diagnosis and rule out everything else that could be causing my symptoms. I hate feeling like something was overlooked and I could just die at any moment.

That's really interesting. Did you get an angiogram or something that would signify clogging? I'd really like to see if I'd have this problem, too. I'm worried about trying something that constricts my veins. If the blood vessels around my heart and in my legs are loose - what about all the other ones that aren't? I'll be constricting everything more - not just the loose blood vessels?

I'm glad you brought this topic up. I think you're right with your assumptions and I generally share the same opinion as you. From everything I've read, POTS patients have "floppy"/loose blood vessels. These are found not just in the legs but (can also be) around the heart. According to Dr. Grubbs, the increase in heart rate is a compensatory response to other problems caused by autonomic dysfunction (in most cases). There's a difference between tachycardia that occurs as a compensatory response and something like "Sinus" tachycardia that's a serious problem needing direct treatment. It then seems almost redundant - a double edged sword, to be treating the tachycardia with a drug that dilates your blood vessels further making them even more loose. This is undoubtedly what happened to me on Atenolol, with a severe increase in frequency of PVC's and how painful they were. To my mind the obvious route to take if a BB/SSRI/SNRI is not helping would be Midodrine or Florinef. I see you're already taking that? it seems counter productive to give these to someone suffering from a high heart rate but if tachycardia is coming from loose blood vessels why not attempt to fix that issue that would (help) resolve the tachycardia indirectly? I think I'm a good example. My standing heart rate could be up to 130bpm standing still and it wasn't until I got compression stockings that my HR has gone down to 70 while wearing them and standing. My new cardiologist acknowledged this when hearing about how bad the Atenolol experience was - and went on to talk about how after I'm diagnosed we'd be doing the opposite - something that would constrict the blood vessels! I also have suspected artery blockage or something like that (wouldn't mind having 10 angiograms all over my body, ha!) but realistically something like that would show up on an echo and even with a stethoscope. My GP explained in great detail that if I had CCVI/VI that he wouldn't be able to feel my pulses in my legs very well and how when he pressed his thumb against my leg it would leave a more lasting impression because of the fluid that's being retained in the legs. If I had that type of problem then I'd go get a duplex ultrasound to insure the valves in my legs were working properly.

Has anyone else here struggled with early doctor appointments? I have to see a special cardiologist for a TTT and the only openings he has for a month are early morning around 9am. I'd have to wake up around 7 which to be realistic, is not going to happen. So, I have to wait until mid January to see him at 4pm. A little off topic - I was talking to a friend who lived in eastern Europe for a couple years and said they still do doctor house calls there - even for regular appointments. Wouldn't that be nice? Just put the TT in your van and drive over, dude!

Mine came on after I was up for 22+ hours - very sleep deprived - very dehydrated. Made the mistake of pushing my body too far and then ran up the stairs holding my breath and that was the beginning - thought I was going to die that day! Immediate onset of palpitations, fluttering, low blood pressure, etc. Have never been the same since.

Rick Strassman did the first study on Melatonin (they thought it could be a psychedelic) and in his book he talks about how the most effective dose is .5 mg (notice the decimal point). He said this small dose was the most effective for a "sedating" or "sleepy" feeling, and that higher doses weren't as effective for this. This has been corroborated in other studies, emphasizing that higher doses are not as effective. Per the M.I.T study: "According to our research, the physiological dose of melatonin of about 0.3 milligrams restores sleep in adults over the age of 50," said Wurtman, lead investigator in the study. "The adults who would normally wake up during the second and third thirds of the night were able to sleep through the night with the 0.3 milligram dosage." The researchers also discovered that the typical health food store dosage of melatonin, which is about three milligrams (or 10 times the dosage in the study), is less effective in treating insomnia. In addition, the higher dosage can cause potentially serious side effects, including hypothermia (low body temperature). The study also showed that the higher dosage elevated plasma melatonin levels during the day, which can cause a "hangover" effect in some of the subjects. Source: http://web.mit.edu/newsoffice/2001/melatonin-1017.html

Caffeine withdrawal will do that to you! It definitely isn't very fun and gradually decreasing your intake may be the only realistic route for some people. My Dad had to switch to green tea, then slowly stopped drinking that. I quit cold turkey a little over a year ago and did not have any negative side effects. I made it a point to drink a ton of water (around 4/5th's of a gallon (spring water) per day). If you struggle with that, you could try drinking a tall glass each hour after waking up (2 tall glasses the first hour) and that should amount to enough. I've never had a single headache while drinking this much.

Thank you for the response. With the abdominal binder, do you wear that at the same as the compression stockings?

HI Everyone, My new cardiologist wanted me to order some compression stockings to see if they helped and today is day 2 and they definitely help with standing. In fact, my heart rate went from 80 - 110 while standing to a cool 70 My questions are: Do you take them off when you sleep? How long do they last before you have to buy another pair? This has been validation for me that the problem is blood flow and when I stand up it pools in my legs (for whatever reason). That said, I have been reading up on DINET's "what causes pots" section. http://www.dinet.org...causes_pots.htm My question is: Has everyone here diagnosed with POTS, ruled out most of everything else that could be causing your symptoms? Mine did not come after a virus, so I feel it could be something else other than just a random quirk in my autonomic system. I also seem to vary slightly from other patients in that one of the most annoying symptoms is slow, throbbing, painful contractions upon standing that last about 10 - 20 seconds that aren't accompanied by much lightheadedness. EDS, Adrenal Disorders, Cervical Stenosis, "the nutcracker phenomenon" and a couple others really interest me... Thanks for the responses...

I hate to sound like such a whiner, but unfortunately, getting sun is almost impossible! Today there's a rare bit of sunshine, but I'm sitting inside in long johns, jeans, two long-sleeved shirts, scarf, and a fleece zipped up to my chin - and I feel absolutely freezing. About to don my fingerless gloves... My understanding is that we are so far north that during winter months the sun is too far away to give you any vitamin D benefits, even if you could manage to expose some skin when it's this cold out. You are absolutely right - you could lay outside naked all day in the northern hemisphere and still not get enough UVB rays to produce an adequate amount of Vitamin D. So, that's what tanning beds are for You can go to a salon or buy your own - they're pretty affordable compared to the long term costs of tanning at a salon. They also make UVB-only beds for the purpose of only getting Vitamin D. They also have miniature ones (maybe a 4th of the size of a full body) that are a bit cheaper and serve the same purpose. My suggestion is to get financing for a tanning bed that you can hang on your wall (to save space, and it's cheaper) and make monthly payments on it if the seller has that as an option. Tanning salons with good, safe equipment charge $15 - $30 per session. Tanning every other day that's $225 - $450 a month, plus gas, and be certain they'll pressure you into buying their lotions, eyewear, etc. For the same cost you could pay off a tanning bed in 2 - 5 months depending on the bed you get. For safety concerns read my post here. It also might be worth mentioning that some gyms have tanning beds you can use that are included in the cost of the membership. You can get a gym membership for like $9 - $20 a month depending on the gym. You'll want to make sure the ballast in their tanning unit is electronic (not magnetic) and that their bulbs aren't old. I've heard they don't replace their bulbs often enough - and you'd want to make sure the bulbs produce UVB rays - some tanning beds are UVA only.

D2 (Ergocalciferol) is synthetic while D3 (Cholecalciferol) is not. D2 is made via a patented process and licensed to drug companies, which is why it's prescribed over D3 (a savvy doctor knows better and would have you go buy your own D3 supplement). D3 is the better supplement to take orally as it's more potent and absorbs better without some of the risks D2 can pose, but tanning is the best way to go. Tanning causes your skin to synthesize D3 sulfate which is water soluble and travel throughout your blood stream freely while unsulfated D2/D3 needs "LDL" cholesterol (the "bad" kind) as a transport. There's research studies that suggest Vitamin D sulfate (again, only produced by exposure from the sun/tanning) is where a lot of the benefits come from - not just the D itself. VitaminDCouncil.org is the leading authority on Vitamin D - was founded by a doctor who's spent most of his career focusing on it. Very interesting stuff!

I don't know how to explain it but in June/July my pulse was around 40 resting, and my BP was very low - around 90/40 - so I experienced this too.

I feel good after tanning and if I skip a few weeks, I can completely tell that my levels are getting low. Getting dizzy is a normal side effect. Since it's not absorbed very well, you have to take a lot of it to get your blood serum levels up - and taking a lot of Vitamin D like that can be hard on your body. What you could do is go get your levels tested (Get the 25(OH)D test - not the 1,25(OH)D test) and just see where you're starting at. Then, see if you can tolerate the D2 then go back after a month and see how your levels are doing. If you're under 50 ng/ml - you're deficient. Optimal is 50 - 80 ng/ml. A lot of labs still use outdated ranges so they'll tell you you're in the normal range even if you're substantially lower than the 50 ng/ml. Don't believe them! You can see NorthernDarlene was taking 50k IU/week and her levels were still the same. Not surprising! An adult needs roughly 8,000 IU's of Vitamin D per day to get their serum levels above 40 ng/ml. That's 56,000 IU's per week. D3 converts something like 500x faster than D2. 1 unit of Cod liver oil = 4 units of D2. I'd say a switch to D2 for the sake of not feeling dizzy would defeat the purpose of taking Vitamin D in the first place - but that's just my opinion. I wouldn't take a Vitamin D supplement unless I absolutely had to.

Just curious to know if anyone else has had issues with oral thrush and heartburn. I got oral thrush after taking antibiotics for bronchitis (which should have never been prescribed in the first place, and ended up being a wrong diagnosis). I got severe heart burn at the same time. My doctor prescribed me some tablets to dissolve in my mouth for the thrush and then prevacid for the heartburn. The prevacid prescription never made it to the pharmacy, so I only went on the thrush med. That cured my both my thrush and my heartburn. Fast forward a week and a half later - the thrush is back (not as bad) and so is the heartburn! I was reading that thrush can cause heartburn and inflammation of the esophagus - which is also a symptom I've been having.

This is extremely common. Vitamin D is absorbed very poorly when taken orally, as others have pointed out. This is because Vitamin D supplements cannot synthesize into a sulfate like Vitamin D that's produced by your skin. Vitamin D is best produced by exposure to the sun. This can be a problem, as we're now into the winter months and being in the Northern Hemisphere, you could lay outside naked all day long and still not get enough UVB rays to produce an adequate amount of Vitamin D. The best option in this case is a tanning bed. The large study done decades ago that sparked the idea that tanning beds cause cancer were partly flawed as they utilized tanning beds with magnetic ballasts. Magnetic ballasts emit EMF radiation which causes cancer. You're not supposed to go near these things yet in a tanning bed with one, you're only inches away. So, only use tanning beds that use electronic ballasts, which don't emit any cancer causing radiation. They say that tanning beds can cause a 75% increase in risk of getting melanoma. Given that the risk of getting melanoma starts off at two tenths of a percent, this is still extremely low (under 1%). "Johan Moan, a scientist and researcher from the Department of Radiation Biology at OUH's Institute for Cancer Research found that the benefits derived from exposure to vitamin D-producing UV rays far outweigh the miniscule risk of developing cutaneous malignant melanoma (CMM). In fact, it is primarily overexposure in the form of sunburns that is responsible for UV-related cancer risk." If you're worried about that, you can get a UVB only (No UVA rays) tanning bed that will not burn you or cause you to tan - and is only used for the purpose of increasing your Vitamin D levels. There was another study done that showed Vitamin D levels skyrocketed with tanning bed use - something like 200 - 400% after a few weeks, tanning every other day - while the group that took Vitamin D supplements orally had very small increases in percentages (something like under 20% if I remember right). I'll try to find that study later. Anyways, I'm rambling. I try to tan every 2 to 3 days. I bought a tanning bed for $1,200 - it hangs on my wall (doesn't take much space) and compared to the cost of going to a salon this often, I've already saved hundreds of dollars and saved a lot of time. If tanning in a salon isn't an option, then a Vitamin D3 supplement is really your only choice - and I'm assuming yours is specifically D3 (not D2?)

My abdominal scan came back normal. You could be experiencing bloating and/or inflammation. Interesting article. I've seen a lot of similar symptoms to POTS and always wonder if it's been overlooked or I could have something else. My doctors always seem to point out something that would have been blatantly obvious if I had another problem...

Welcome to the forum Interesting story. How do you feel about him being against doing a TTT?

Is this done in combination with a TTT? And if so, do they always go hand in hand or do you have to ask your doctor to include this in the test? Thank you

Night time (specifically when I become fatigued/tired) is my biggest struggle. I start getting anxiety and my body feels like it's shutting down for the night. My heart feels like it's more vulnerable, like it's at it's weakest point of the day. I've always had trouble falling asleep, so it can take 2 or more hours to actually fall asleep. Once I do fall asleep, I'm in heaven and all the above symptoms are alleviated. I used to be able to stay up 24 hours (did it all the time with friends as a teen) and now if I'm up anywhere near that long it's like a death sentence.

I would be really frustrated, too. I've never read about a TTT being that short in duration. Bologne! I'd hope you can talk to your doc and insist on having a longer TTT done to bring out your symptoms.

Happens to me all the time - except symptoms come on a bit fast for me. I try to pump my ankles to get the blood flow moving. That can help, but more often than not I'll pump my foot up and down to move my entire leg (a lot of people do it - like when they're nervous or something - hope you know what I mean) and I think that can help get the blood flowing back up a little.

I try to get 2 - 3 liters a day which should work out to around 70 - 100 oz, or almost a gallon.