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Thanks gofl1, even a slight improvement in overall fatigue might be worth a try for me! Anoj, I totally hear you!! I only work two days a week right now, but on those two days I a basically a zombie. Once I go back to a 5-day work week, I know I am going to be very unproductive at home and will probably have no social life!

It almost sounds too good to be true doesn't it?

I just finished the documentary "Changes..." and was interested by the part where the female doctor mentions a medication called Provigil for people who have somnolence as a POTS symptom. I had never heard of this before, and I cannot find any topics on here about it. Has anyone tried it, or one of it's brethren (modafinil, niuvigil)? I usually do not take pharmaceuticals because I get side effects 90% of the time. But I have been trying to overcome the need for 10+ hours of sleep for years and nothing has worked (excercise, cutting out caffeine, SSRIs, beta-blockers, licorice, etc.). Major life complications will follow if I cannot get, maintain, and perform exceedingly well at a job this fall. Any advice is appreciated! Thanks!

I am in a similar situation. I met this chiropractor that "cured" my friend from all pain. I told him what was going on with me and said he has helped other people with heart conditions. His philosophy is that modern medicine doesn't have a place for real "healers" so they all have to be underground (so I hear you on the iffiness and quack factor!). And he is not a typical chiro. He does one hour of structural integration massage followed by adjustments. I went once a week for four months and honestly, I did notice a significant drop in my heart rate. But I felt like I was spending way too much money for something that wasn't certain and I felt like it was never going to end. Since my stress level is at an all time high I couldn't take it anymore. That said... if he were to work with me for free I would say YES YES YES because I did feel at least a little better. Good luck with whatever you decide!

Here's how I have heard it explained, which seems to work for me when I explain it to people: "Imagine jogging all day long, every day, and you can't stop even if you want to. Sounds pretty tiring, doesn't it? That's what it's like to have POTS." And then of course I have friends who run marathons, and my husband is a professional cyclist, but even athletes need recovery days. It's not an answer to your question exactly, but it may help people empathize.

Thanks Elfie! Everyone in Portland has Vitamin D deficiency! So I do know that will be one huge benefit of moving! It's seems like if I live and work in Denver things should be okay. I assume living at one elevation and working in a totally different one would cause symptoms to flair up like when you visit relatives. I know a lot of people in Denver who commute from higher elevations, but with POTS, commuting is terrible idea anyway!

Thanks Wendy! I read all of those posts a while back, but everyone seemed to have a different opinion. I do feel like even with the altitude, the Colorado sun has to be better for me than nine months of cloud cover in Portland! And I think you are right, I should be able to adjust to the altitude. But please let me know how you do in Breckenridge. I grew up skiing there every winter. But I am sure if I had POTS symptoms I would have attributed my tiredness to a week of skiing, not any environmental changes!

My husband and I are thinking about moving to Denver from Portland but I am concerned about the altitude and barometric pressure changes. For example, on a stormy day I went skiing in Oregon and as I was going up the ski lift I progressively started blacking out. I am pretty sure I would have fallen off if I I wasn't with friends. So I am just wondering if anyone here lives in Denver and has any input on if it is better or worse than other places in terms of how the weather an impact POTS symptoms. Portland is pretty bad with low pressure systems constantly coming in... so I just don't want to move anywhere that is worse! I'd move to San Diego in a second if there were jobs! Thanks!

Me too! I live in Portland, OR, which is similar to the UK in terms of weather. I am often affected by low pressure systems. But I was feeling great for a few months until there was one horrible day for weather changes and I haven't bounced back since. Now I just want to move to San Diego, which has consistent, high, barometric pressure!

Oh I also wanted to say something in regards to your theory about POTS possibly an autoimmune connective tissue disorder. Personally, this is my theory. I think that is why my chiropractor has helped me so much... He's not your typical chiro. He starts with a one hour deep fascia massage and then does adjustments.

Okay, I couldn't read all four pages of responses but I need to put this out there... Sprionolactone is a diuretic so can be VERY bad for POTS patients. The only time I every completely fainted (stood up and then immediately hit the ground and may even have had a seizure) was because I was on spironolactone in the middle of a hit wave. Between the two, I couldn't do enough to stay hydrated. HOWEVER, all of the reasoning behind why I was on the drug made sense, especially when I correlated it to POTS, including what you mentioned. It is just that for me, and I would get many other POTS patients, the diuretic effect counters everything else we need to do to be healthy. In regards to Vitamin D, mine were also low when I was diagnosed. I also live in Portland though... so it's expected. But every doctor I go to reiterates the importance of taking Vitamin D for nearly every disease out there. My nurse practioner ever said that if you have optimal levels of Vitamin D you should never get sick. And if you do get sick, go in for a Vitamin D IV.

I had a naturopath who found me a cardiologist who could diagnose me, but neither were capable of working with me on treatment. The cardio wanted to try medication after medication, all of which I reacted to (possible MCAD). Finally she said "POTS isn't fatal, it's just annoying, so sometimes it is better to just live with it than take a medication with side effects." While I agreed that I shouldn't take the medication she prescribe, I couldn't handle that she wrote a nearly debilitating disease off as "just annoying." And my naturopath wanted to find nutritional explanation (including telling me I have an eating disorder) which simply wasn't there. So actually, my personal trainer and chiropractor have been the catalysts to my improvement.

Hi SleepHunter! Exercise is one of the most chaotic topics for POTS patients. Some of us go into depression just thinking about it, including me. But, as I have mentioned in some other forums, exercise has been a key component in my health since I was diagnosed. When it comes to cardio, I personally believe it is always about assessing limitations and not exceeding them. For example, 6 miles of running would literally kill me. My heart rate has always exceeded 200 bpm by 1/4 mile! But I do other cardio that I react less to, such as rowing. Because of my fear of exercise I hired an extremely qualified trainer who monitors my heart rate with me. I work out for only 40 min, 3x a week. I do 5 min of warmup cardio, then strength training for 30 min with intermittent 1 min. cardio intervals, followed by 5 min of recovery cardio. For me, that is all I need. In three months I converted 9 lbs of fat into muscle, and my heart rate is stabilizing! Good luck!

I am 5'7" and 120 lbs. Same height and weight since I was 14. I have always had to convince people that I am not anorexic... counting calories and fat content to prove it. My response: "you try having an average heart rate of 115 by going for a light jog all day, every day and not be tired and underweight."

This totally makes sense to me! I thought I recently read a scholarly article to back up my point, but I can't find it now, so I will try my best to explain it, with my convoluted story... I was seeing a rolfer for my TMJ and fold him about POTS. He then mentioned that there is something above your chest and below the top of your neck that controls heart rate. He thought it might be interesting to see if Rolfing would help alleviate pressure and therefore help my heart rate. He had heard about it working in school. Then that week I met my friend's chiropractor who also does structural integration and deep fascia massages. I asked him about what my rolfer said and he was immediately like, "absolutely...I've cured a bunch of people." Okay, it was more technical than that, and he was more modest. But he came with an amazing recommendation and "cure" story from my friend. So anyway, I have been seeing him for two months, two hours a week. He noticed that my upper ribs were totally out of wack and so finally got to work on my upper torso and neck a couple of weeks ago, and I haven't been in pain since. This is just one comonent of a larger strategy to kick this thing to the curb.... But it seems like an important component in the big picture.

I hope as I write this you getting much needed sleep!! In regards to the mouthpiece, I think the OTC ones are best for people who just grind or clench their teeth when they sleep. For malocclusions, or bad bites, the prescription ones find the exact spot for you to find relief. Even though something is usually better than nothing, I would imagine if it hurts, then it could exacerbate TMJ stress. For me the OTC ones made it worse because I would dream I was eating and start chewing on it.

Emma, the tabata protocol is 20 sec full out, 10 sec rest, and repeat 8 times. There's lots of suggestions online about what workouts to do, but I found rowing machines to be easiest for me because it provided good cardio and strength training without my heart rate skyrocketing. Also, if you haven't been exercising it is probably not good to start with it. I built up my strength and cardio for two months before trying it. Nowwhat, I seriously sympathize. I don't have EDS, but I do know that before this year I could never commit to exercise because it always ended badly. This time around, for me, listening to my body and sticking to my gut is the key. I know doing more than 8 min of cardio and 40 min total of working out will kill me for about a week, so I won't go over that no matter what anyone tells me. Luckily my personal trainer is awesome about letting me do 30 sessions, even though his policy is usually one hour. We do strength training with one min cardio intervals scattered in between sets. After the 30 min sessions I do cardio for 8 min. He always tells me to do ten, but I won't until I know I am ready. Good luck, I hope you find something that works for you!

Thanks for the kind words misstraci! Emma246 - Dr. Levine's protocol was HIIT on rowing machines, but it was for twenty minutes: 1 min on, 1 min off, and I don't think at full intensity. Probably 80-90% of typical max heart rate. When I researched different types of HIIT, I found out that Tabata protocol is the most effective for the heart because it increases anaerobic and aerobic capacity. I wanted to do whatever was most effective, and it just so happens that it is only 4 min, not 20. I still can't commit to doing more than 8 min of cardio. But you do have to go ALL OUT. I have been doing it on the rowing machines, and haven't quite gotten to 100%, but have been improving each time. When I recover afterward, I try to stay upright for as long as possible, walking on a treadmill for a couple of minutes. But sometimes I have to lay flat to get my heart rate back down.

I took a Carroll Food Intolerance test a year ago, which said I am gluten and sugar(cane) intolerant...also potato. I have been off all three for a year and still have POTS symptoms. My naturopath said I am the only patient she has had who didn't get better when they when off their intolerant foods. But I haven't tried going off the other grains you mentioned.

Hi! This is only my second post, but totally the reason I joined this forum, because I cannot stress enough how key exercise has been in helping me feel better this year. First of all, I loathe exercise. I always feel worse after. I seriously hate everyone at the gym who says working out always makes them feel better. So after 20 years of telling people I couldn't work out because I have a heart condition (I didn't have a diagnosis but my heart would jump to 200 within a minute of running), I finally got a diagnosis of IST (my cardio said she couldn't call it POTS, because people grow out of POTS) and I found tons of research spouting the benefits of exercise on POTS patients. And luckily, my heart checked out structurally, so my cardio cleared exercise as long as I wear a heart monitor. Ergo, I hired a personal trainer. For the past three months I have been seeing him three times a week for a mere 30 minutes each. I am the same weight as before, 120, but I have converted 9lbs of fat into 8lbs of muscle... Taking my body fat percentage from 24 to 18. Two weeks ago I read an article about the benefits of high intensity interval training (HIIT) and looked up HIIT and POTS and found the following article: http://newsroom.heart.org/pr/aha/1356.aspx Since then I have added 4min tabata intervals into my training which I think was the catalyst for what happened this week.... Twice I caught my standing heart rate to be 85!!! It didn't last and was pretty random.... But it's a start! And everyone around me says I seem a lot better. Still a long ways a way, and I was hit hard by barometric pressure changes this week, but there's light at the end of the tunnel now. Sorry this was so long!

Hi! I've been wanting to reply for days, but had to get my account validated! I seriously feel for you and hope you find relief! So my TMJ pain has never been as bad as yours and I probably respond better to pain killers, but here are the things that have helped me: DO: provided temporary localized relief but did not solve the root of the problem so I had to keep going back. TMJ specialist: spent $5k on getting the best possible splint (guard) for my bite. They used this technology that can create a mouth guard that puts your bite in the exact place it needs to be to have the least stress. I got a lower night time guard and a lower day time guard, but I couldn't stand the day time one. The guards work best during your sleep anyway, because it allows your muscles to relax. (still only provided 90% relief... I had headaches one day a week instead of all seven). Advil PM: regarding sleep... Pain killers for me only work when they knock me out. Advil PM allows my whole body to relax to let the Ibprofen work. It is my saving grace anytime I feel a TMJ headache coming on. Rolfing: seeing a rolfer allowed me stop using the night guard. Sometimes TMJ pain is simply a problem with a bad bite, but I have been told that other times it can be from a maladjusted spine. So while the rolfer did jaw work with me, having him straighten my spine helped a lot more. Structural integration (basically same thing as Rolfing) combined with chiropractic work: right now I am seeing a doctor who does both and I have been pain free for three weeks!! I honestly don't know a time in my life when that was true. Good luck! This is my first post to the forum, so I hope I was clear that this is just worked for me and in no way medical advice!