roxie Posted January 28, 2012 Report Share Posted January 28, 2012 A few weeks ago we had a discussion about biofeedback and if it can help or not. My dr recommend this as a treatment for me and referred me to the POTS Treatment Center in Dallas. I trust him so I was happy to go even though I didn't understood how it would work. He told me it's to help control my heart rate through breathing.Then, I saw the thread and it created even more skepticism: So I decided to do my own research and I was surprised to see there is a lot of science that this is a helpful treatment and some of the best dr 's recommend it!I came across this page from Dr Grubb's book "Syncope: Mechanisms and Management" on google where he lists it a noninvasive treatment:http://books.google.com/books?id=Kdi0jhcRyEMC&pg=PA219&lpg=PA219&dq=dr+Blair+grubb+biofeedback&source=bl&ots=hqB1ggnr2O&sig=DQadqn2kk-NjPCk2UXa_pjMfgZo&hl=en&sa=X&ei=VUcjT-XGMcO8twfU69UC&ved=0CGMQ6AEwBw#v=onepage&q&f=falseAs well as this article where he mentions it:http://circ.ahajournals.org/content/111/22/2997.fullThe idea behind biofeedback is to level to sympathetic and parasympathetic nervous systems through diaphragmatic breathing and other physiological methods, which in turn calms the autonomic nervous system. It also works to improve heart rate variability and respiratory coherence. By getting our respiration and heart rate in coherence our bodies simply work better! Before I started I would've said that heart rate variability is our HR swings but it's not! HRV is one of the most basic indicators of autonomic dysfunction and stress. It's commonly checked in autonomic testing:http://www.biocomtech.com/hrv-science/heart-rate-variability-basicsHRV and biofeedback in patients with heart failure:http://www.bmedreport.com/archives/6234From there I wanted to see if there is any connection between HRV & POTS. When I googled it I found this study from Dr Julian Stewart that shows marked HRV deficits specifically in low-flow POTS and it's affects on exercise tolerance:http://www.nymc.edu/fhp/centers/syncope/exercise_intolerance_pressor_reflex.htmAll in all, I think it's a viable treatment option. I do not think that it is a cure and like everything else it will work for different people to different degrees.As to the POTS Treatment Center, I've been through 5 sessions. I think the language on her website is meant exactly as she says "an effort to encourage other POTS patients" The whole office is very into the power of positive thinking. She wants others with POTS to know its possible to have a better quality of life. She has never said I will be cured. So far, I have seen some improvements I was told it will take a series of treatments nit I am already sleeping better, my headaches are lessening, and my charts from the sensors are showing improvements.They hook you up to a few sensors:An EMG to see muscle tension. Keeping our muscles tense will draw blood from areas that we need it.Hand temperature sensors: this one is interesting. Hand temperature is an indicator of peripheral blood flow. During the sessions we work on increasing peripheral blood flow to the hands which will in turn warm the up. My first day there they hooked me up and it said my hands were 71 degrees. A normal hand temp is 95, ideal is 98-100. She looked at me and said "you get migraines don't you" I guess cold hands shows headaches. Anyways, in my 5 sessions so far we have worked on it. At first it was hard but very slowly my temperature did raise! My last session my baseline temp was 79 degrees and through my last session we got a few minutes at 90! I've been working on it at home and it is raising my all around hand temp.The last thing we work on is heart rate variability and we work on breathing patterns increase the strength of our heart and regulate the variability which will in time help us slow down our hearts when they are too fast. This is another thing that's a challenge. Seriously, I was thinking "how hard is breathing" but it takes a lot of concentration!When I was first hooked up, my coherence was only 3 % in the 15 minutes they were recording it.The dr just looked at me and said "this is not good". After 5 treatments and working at home I was able to get 55% coherence. I'm hopeful that I'll start seeing more improvement as time goes on and feel that it's a visible treatment option for us, especially those that don't do well with medication.Anyone who can't go to biofeedback may benefit *as other said in the post before * a consistent deep breathing & relaxation practice at home. There's a lot of info of how to do it online and YouTube, someone suggested Dr Andrew Weil talks about? Quote Link to comment Share on other sites More sharing options...
Serbo Posted January 28, 2012 Report Share Posted January 28, 2012 Excellent post. This sounds very interesting. Meditation and breathing from stomach certainly helps, will check out the links you have included Quote Link to comment Share on other sites More sharing options...
Christy_D Posted January 28, 2012 Report Share Posted January 28, 2012 My son had biofeedback at the Mayo Clinic program he went through and also learned the diaphragmatic breathing. Unfortunately it hasn't helped with his nausea, which is his worst symptom. They said it is impossible to vomit while doing this breathing, but it is very difficult to breath like that 24 hours a day. He does find it relaxing though and uses it as a coping mechanism. Also, out of all the things he was taught at the program and different sessions he took, biofeedback was the only thing insurance wouldn't pay for. This was true for many of the other patients as well. Quote Link to comment Share on other sites More sharing options...
roxie Posted January 28, 2012 Author Report Share Posted January 28, 2012 Definitely, it's hard to breath like that for 24 hours! I think with regular practice we'd naturally breathe that way more often but I'm sure not 100% of the timeSome insurances pay & some don't. My insurance is only paying part.There are biofeedback devices you can buy online. I don't know how truly effective they are though Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted January 29, 2012 Report Share Posted January 29, 2012 Great post! I think anything that helps is great, I just don't like the "cure all" thing. Question - what was this referring to? "When I was first hooked up, my coherence was only 3 % in the 15 minutes they were recording it.The dr just looked at me and said "this is not good". After 5 treatments and working at home I was able to get 55% coherence." Have never heard the term coherence.I'm looking into a doctor who does these "auricuar treatments", http://fibromyalgia-treatment-center.com/Diagnosis.html - my insurance may even cover it - they are local and I guess he is one of only 5 doc in the country licensed to do it. I have had bad luck with traditional medicine, am looking into combining it with more homeopathic and alternative treatments.Please keep letting us know how it goes! Thanks!Claire Quote Link to comment Share on other sites More sharing options...
roxie Posted January 29, 2012 Author Report Share Posted January 29, 2012 Oh sorry for not explaining better! When I was hooked up to the heart rate & respiratory coherence machine. It was saying that my breathing & heart rate variability were only working in sync 3% of the time Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 30, 2012 Report Share Posted January 30, 2012 Thank you so much for sharing all of this! That is really interesting, and I appreciate the detailed information. I hope that this treatment helps you. Please keep us updated!Rachel Quote Link to comment Share on other sites More sharing options...
Kirsti Posted January 30, 2012 Report Share Posted January 30, 2012 I'm so glad it's helping! I really think that deep breathing helps all POTS patients. I went there last August and my hands have never been icy-cold since! Also, I have found that treatments that are not covered by insurance have actually helped me way more than those that are.You can buy the biofeedback program online, but I found you can also buy just the coherence coach, which is a lot cheaper: http://www.heartmathstore.com/item/ECCO/emtech-coherence-coach Quote Link to comment Share on other sites More sharing options...
roxie Posted January 31, 2012 Author Report Share Posted January 31, 2012 Kirsti, is that only the breath pacer or will it also track your coherence levels? Quote Link to comment Share on other sites More sharing options...
Kirsti Posted January 31, 2012 Report Share Posted January 31, 2012 That is only the breath pacer. You can get the whole emwave program, but it is a lot more expensive. Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 1, 2012 Report Share Posted February 1, 2012 Hey Bananas!You are way more well-versed in this than I am; BUT i thought I'd share our experience. Before my son was officially DXed, he was incredibly sick and did use bio-feedback to help deal with the frequent nausea/vomiting/fainting. It WAS helpful. He was so sick that he couldn't even ride in a car or plane w/o constant vomiting. His psychologist gave him the biofeedback laptop to use on the flight to Hopkins and we are convinced that It's the only way that he actually made it there The problem was that it only helped when Mack was actively doing it and it took 100% concentration. It just isn't feasible/possible to do consistently.That being said, so HAPPY it's helping you!!! Your new doc sounds great. I appreciate your sharing & can't wait to hear more about your progress.Hugs-Julie Quote Link to comment Share on other sites More sharing options...
roxie Posted February 1, 2012 Author Report Share Posted February 1, 2012 It DOES take 100% concentration. As i do it more, its easier to get into concentration mode,though.I think I will have to continue practicing after the program is done and that's fine with me. There is a computer program that can be bought & taken home! Actually, what the biofeedback person has me doing at home is note all that hard! She has m e doing "homework" twice a day- before I get out of bed & before I go to sleep. I like doing it before I go to sleep!Then, when I'm having particularly bad symptoms, I stop & work on getting my breath right. The thing with this again though is that it has to be practiced. It's one thing to feel sick & stop when you are alone but when someone talking to you there's a learning curve to get it down (I'm still learning) As it is, right now, it doesn't eliminate not feeling well but it sort of gets me into a zone and relaxes me. I'd rather be relaxed than tense if nothing else. It takes commitment, that's for sure! Quote Link to comment Share on other sites More sharing options...
roxie Posted February 21, 2012 Author Report Share Posted February 21, 2012 I haven't been able to keep up with 2-3 biofeedback appointments a week SO I started doing an at home program with heart math.This is what I boughthttp://heartmathstore.com/category/emWave2/I don't know that it's taken anything away BUT I do think it's beneficial when I am feeling really bad and get tense because of it. It really helps to center myself Quote Link to comment Share on other sites More sharing options...
Amir Posted March 18, 2015 Report Share Posted March 18, 2015 Anyone who can't go to biofeedback may benefit *as other said in the post before * a consistent deep breathing & relaxation practice at home. There's a lot of info of how to do it online and YouTube, someone suggested Dr Andrew Weil talks about? I'm so glad it's helping! I really think that deep breathing helps all POTS patients. I went there last August and my hands have never been icy-cold since! Also, I have found that treatments that are not covered by insurance have actually helped me way more than those that are.You can buy the biofeedback program online, but I found you can also buy just the coherence coach, which is a lot cheaper: http://www.heartmathstore.com/item/ECCO/emtech-coherence-coach As a new patient of POTs i am not familiar of these online sources, can you please give me some links for online exercises and programs as well as the devices if I can buy some of them Quote Link to comment Share on other sites More sharing options...
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