Riley Posted April 19, 2018 Report Posted April 19, 2018 So I have had most of the POTS symptoms for the past 8 years, I have never been diagnosed because no doctor ever made the connection, so over the past 8 years I have been able to calm down most of my symptoms doing my own research. Now that I have learned about Dysautonomia it all makes sense, but I probably won't show the changed postural heart rate in a test because my POTS is controlled. And I don't want to stop doing the things I am doing to see if I get a diagnosis. The main thing that helped me was to start taking 2 pills of Magnesium Taurate every night before sleep. I stopped having tachycardias, heart pains, and anxiety attacks. Has anyone tried Magnesium Taurate? After my symptoms got better, I started running and that also helped a lot. Besides that, I have a very strict diet, no gluten, no dairy, no artificial anything, mostly home cooked meal, no caffeine except for half a cup of green tea, no sodas, and almost no sugar. I also take olive leaf extract, curcumin, Q-10, B vitamins, and during my period Blood Builder Iron supplement. To help with allergies and digestion I take Quercetin Bromelain Forte by Prothera. Once in a while, I take flax oil, Nascent Iodine, collagen, and maca. I still feel tiredness, GI symptoms, frequent urination, etc I have decided now to start trying the Win Hof Method to see if I can control my Autonomic System Any thoughts? Quote
corina Posted April 19, 2018 Report Posted April 19, 2018 Wim Hof (the Iceman) is Dutch, as I am. I'm interested in his method though at the same time don't think it will cure my dysautonomia. The breathing exercises create an effect that can be compared to hyperventilation which can lead to short periods of loss of consciousness, people have died trying them (probably while exercizing in the wrong place like while driving, swimming, diving etc). If you are into trying please make sure you are well instructed and def not alone! Quote
Riley Posted April 19, 2018 Author Report Posted April 19, 2018 I agree with you that it can be dangerous. I read the book "What Doesn't Kill Us" about the method, and the author warns of the dangers. I am also not planning on the cold showers until allergy season ends as my body right now has enough just dealing with pollen. But I have started doing a little bit of the breathing exercises and seems that it has a good effect on my body (even if only placebo effect). Just calmer, or something like that. The book tells of people with autoimmune diseases or chronic diseases that have gotten better with the method. Definitely, it should be done very carefully and may not be for everyone. Quote
Womble Posted April 20, 2018 Report Posted April 20, 2018 Interestingly, about three weeks ago I started taking Chelated Magnesium two in the morning and two at night before bed and have also found it really helps, particularly with sleep, a reduction in adrenaline surges and generally feeling calmer. My night episodes have dramatically reduced in both frequency and severity and my restless legs are significantly better, as are the muscle tightenings I was getting at night. I am diagnosed and clincially, still have POTS. I’m on Ivabradine and while it has really helped, I have been struggling recently after a very bad bout of flu back in February, on top of lots of stress and have found that recently the Ivabradine isn’t lowering my hr enough to reduce symptoms. I am hoping, if I keep getting better sleep, via the magnesium, that I will eventually be able to increase my exercise to improve my fitness and skeletal pump, which should help with venous return and hopefully help reduce the tachy. A few years ago I managed to get really fit and strong (it took a very long time and was anything but easy) and that is the only time I can remember my POTS symptoms being under what I consider to be a decent level of control. I really want to get back there and know it’s going to be a long journey - again - but am hoping that improving my sleep is the first step towards it and the magnesium definitely seems to be helping with that. Having said all that, my 14 year old son got his TTT results today and was also diagnosed with POTS, unfortunately for him magnesium hasn’t been as helpful. I do think he is sleeping a little better than usual, but he’s still so poorly that he is now being signed off school for the rest of this school year. We’ve tried all the usual non-pharm measures with him and while they have reduced the frequency of his faints, his exhaustion and autonomic symptoms have been crazy recently (actually since his TTT). We’re now waiting for him to see an EP to discuss whether it’s time to try medication and if so, which one. So it does seem what works for some of us, may not work for others - even when we are closely related and have the same underlying mechanism to our POTS/AD - in our case EDS/Hypermobility Spectrum Disorder. Quote
bombsh3ll Posted April 21, 2018 Report Posted April 21, 2018 In my experience magnesium is a decent laxative but doesn't have any other benefits. Quote
Amy_B Posted April 22, 2018 Report Posted April 22, 2018 Interesting as I've been a magnesium "fan" for years, even before I got diagnosed with POTS. Mag taurate and glycinate both keep me awake if taken at bedtime and cause adrenaline rushes. Malate seems to help with my muscle twitches and fibro though. Quote
Womble Posted April 22, 2018 Report Posted April 22, 2018 It’s strange how it seems to work for some people and not for others, although I suppose it depends if you are deficient before you start taking it. I wasn’t expecting it to work, but was desperate enough to give anything a try and have been pleasantly surprised. Also strange how it seems to cause your adrenaline rushes, but reduce mine. Quote
Riley Posted April 23, 2018 Author Report Posted April 23, 2018 Great to hear from different experiences. Magnesium Citrate does not help me as much as the Magnesium Taurate. I also hear some people benefit more from the Magnesium Oil so it does not upset your GI. Now, I know that I may sound a little out there but I have started to listen to a life coach podcast with Brooke Castillo and it has helped me to keep thinking positive things throughout the day and I really believe that our thoughts can control our feelings and therefore it has some control over the autonomic system. It is very easy to give up and feel miserable when our bodies start to act up, but we do have control over our emotions and feelings when we change our thoughts. We cannot change our circumstances, but we can change our thoughts. Quote
What's goin' on? Posted June 5, 2019 Report Posted June 5, 2019 I am very interested in your experience with your Wim Hof training. My daughter has strange symptom where she cannot tolerate too warm or cold weather. It seems to me like an autonomic problem. Have you taken his course(s) or are you just doing the breathing and cold showers? I think you probably need the courses to really learn to control your autonomic NS. Quote
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