Echo

Hi everyone, I posted a couple of months ago about some potential treatments using different types of neuromodulation. Yesterday I had an online appointment with the Brai3n clinic and it was suggested to me to try TENS stimulation of the C2 (cervical nerve 2) area. The clinician suggested different settings which I won't post details of here in public but I'm researching C2 and autonomic nervous system and here's some studies I found so far. It seems very interesting! -Occipital C1-C2 neuromodulation decreases body mass and fat stores and modifies activity of the autonomic nervous system in morbidly obese patients--a pilot study Findings: No adverse events were observed in this group. One patient reported amelioration of constipation and one reported two incidents of salivation. The average body mass decrease was 5.6 kg in 4 weeks and 8.7 kg in 8 weeks. Body composition study showed a 2-month decrease in body fat of 7.9 kg on average. HRV revealed increased parasympathetic tone (LF/HF 4.4 ± 4.3 SD vs. 1.6 ± 1.7 SD). C1-C2 occipital stimulation seems being capable of decreasing body mass and affecting a positive shift in body composition and significantly increases the activity of the autonomic nervous system. -C2 Nerve Field Stimulation for the Treatment of Fibromyalgia: A Prospective, Double-blind, Randomized, Controlled Cross-over Study Findings: During the 6 week trial phase of the study, patients had an overall decrease of 36% on the fibromyalgia impact questionnaire (FIQ), a decrease of 33% fibromyalgia pain and improvement of 42% on the impact on daily life activities and quality. These results imply an overall improvement in the disease burden, maintained at 6 months follow up, as well as an improvement in life quality of 50%. Seventy six percent of patients were satisfied or very satisfied with their treatment. There seems to be a dose-response curve, with increasing amplitudes leading to better clinical outcomes. Subcutaneous C2 nerve field stimulation seems to offer a safe and effective treatment option for selected medically intractable patients with fibromyalgia. There were also a couple of articles about C2 stimulation and decrease in headache but they didn't mention anything about the autonomic nervous system or related conditions. The clinician I spoke to said that this isn't a miracle cure and that not everyone responds to this but that they've had success with some patients using TENS stimulation so this definitely has potential. I'm going to see if I can get a TENS machine for home use and might try it out.

Hi everyone, with my recent flare up of dysautonomia I've been looking a lot into neurology. As far as I am aware through a lot of testing with many specialists I do not have an identifiable cause such as autoimmune disease so these may not apply to everyone but I think every little bit helps. Here are some things I'm quite fascinated with: 1. Neurofeedback. Exsurgo chronic pain tool This is a very new device called Axon designed for chronic pain but I think it's pretty clear that there's a lot of overlap in brain areas and activity between chronic pain and dysautonomia, especially sympathetic activation. I'll be watching with interest especially since it's being developed in my country of residence. 2. Neuromodulation BRAI3N This is a neuromodulation clinic in Belgium run by University professors and medical doctors (not holistic health practitioners. Not putting them down or anything just wanted to make the distinction.) POTS/dysautonomia is not on the list of disorders but chronic fatigue and fibromyalgia is. I have been in brief contact with one of the professors (who is also a neurosurgeon and neuroscientist) over email and he mentioned nerve stimulation for dysautonomia. I am looking to have an online consultation with him as I am not in Europe just to see what he thinks about dysautonomia from a neuroscientific point of view. If anyone is interested I can update here if I do end up having a consultation. Interestingly their explanation of CFS mentions the HPA axis which is what the Cortene drug trial recently has announced success with in treating CFS. 3. Pons device This was originally written about by Norman Doidge in his neuroplasticity books, I don't remember if it was the first or second one, and seemed to provide a variety of benefits to test subjects such as improved mood, sleep etc. At the moment most of the information you will find about it is on balance and MS because that's what the FDA have it approval for. 4. Infraslow Neurofeedback https://neurofeedbackservicesny.com/the-benefits-of-infraslow-neurofeedback-training/ There's a bit of a preamble at the start of the article but it explains the concept in an easy to understand way. (This website is for the clinic which has 'pioneered' this type of neurofeedback.) This is a relatively new type of neurofeedback which targets the ANS in particular and is currently used for high stress/anxiety problems. I think anything that shows it can directly affect the ANS is a very interesting and fertile area to explore! I really do think that this is where a lot of the future of treatment lies, especially for those of us who don't seem to have a clear underlying cause such as autoimmune issues. Hope this was interesting!

Thank you everyone for your answers! It is reassuring that I'm not the only one. It feels very isolating to think no one else experiences this. So many times in this forum I come across people talking about how they have panic attacks or panic attack like symptoms but they only discuss the physical aspects and often mention they don't feel emotionally/psychologically scared or panicked. For me this is the worst symptom and I'm glad to know I'm not the only one experiencing this. I really wish my symptoms of dysautonomia were purely physical not that I'm trying to say having physical symptoms is easy, but it's just when you feel your mind/brain is letting you down as well it's just a stress you really don't need. Thank you for your responses!

Hello everyone! I used to be around on this forum a few years ago when my episode was really bad and then eventually it got better and I just carried on with life as best as it would allow. Now I'm in the middle of a new episode/flare and I'm scared more than last time. I want to ask, does your pots/dysautonomia cause you to experience feelings of terror or awful doom or sometimes like you're going to lose control psychologically? I'm not talking about the physical anxiety symptoms such as tremor, rapid heart beat etc which I also get. I'm talking about the internal psychological/emotional experience. These are not classic panic disorder type panic attacks, because I have had these and it feels different. These feelings strike out of nowhere (well not nowhere, it's dysautonomia but I hope you know what I mean) and feels like the brain is glitching or something. For me at the moment it is happening when I am falling asleep or I wake up from it. It is extremely frightening. I haven't been able to eat or drink much lately and I am exhausted. I am malnourished and exhausted. I am hoping that these experiences will subside once I am able to eat properly and get some rest, and I'm planning on contacting my gp clinic and urgently getting a prescription for some mild short term sedative to at least just give my body a break and a chance to start rebalancing itself. Please tell me I'm not weird and that at least one person understands what I'm talking about when I say psychological feeling of terror/doom...not just physical symptoms of anxiety. Thank you! P.s. this only happens when my dysautonomia is generally being awful and not at all a regular occurrence so I know it's not a purely psychological problem. It has also gotten worse the longer I've gone without eating/drinking enough which I know just puts more stress on the body/brain. I would go and take myself to the ER for an IV but my country is currently under strict complete lockdown for Covid and I'm not vaccinated yet so I don't want to take the risk of going into a hospital.

This physiological study that came out recently suggests that fight or flight is driven by a bone hormone. Not sure right now how this could relate to POTS but very interesting. https://phys.org/news/2019-09-bone-adrenaline-flight-response.html?fbclid=IwAR08hq2sYw6fBF0wxnGLdzKHUi7mg8JL2xgn_-byZv2jj6Z9tzICdXalIYQ

Hi @StayAtHomeMom, I think the problem is not with vaccines but with our bodies. So many people vilify vaccines as "causing" this or that but the vast, vast majority of the population who get vaccines have absolutely no problems with them. Also, it's actually hard to prove that the vaccine caused any particular issue to arise. There is simply no way to tell and people who do this are committing the post hoc fallacy. Classic correlation/causation issue. I think if someone starts experiencing issues after a vaccine, it's because their body already has problems. I personally doubt that a healthy person whose body systems all work well will suddenly become incapacitated after a vaccine. For example, when I took the pill I had an extreme reaction to it. Doctors don't believe me but my reaction was so bad and my blood pressure went so low I actually blacked out in my own home. I literally fell to the ground and my mum found me collapsed in the kitchen (and that was only one of the bad symptoms of the pill for me). For years I was very angry and would think "If only I didn't take this stupid pill, it has caused all my issues etc." But now, after many years, and reading about other people's experiences, I realise that the pill didn't cause my issues. My body already had issues, otherwise it wouldn't have such a hard time dealing with the pill. Does that make sense? If you think your children already have health issues then sure, be cautious, but I wouldn't say the vaccine can cause any issues, only make existing ones worse. Having said that, I have been fully vaccinated as a child/adolescent and get the flu shot every year and I have not had any reactions to those vaccines. I am aware of the HPV vaccine controversy but I'm not sure what people are afraid of in this vaccine. Is it the adjuvants? The preservatives? The HPV strains themselves?

Hey guys! Just came across this and didn't realise this was an actual thing! There are some studies showing that floatation therapy calms down the nervous system in people with anxiety. Here is a sample article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040829/ Has anyone here tried flotation therapy? If yes, did you experience any benefit?

@potsiebarbie That was my first symptom. And it was all on the right side of my body as well. Doctor was like, well it's carpal tunnel. And I said ok, that's my hand/wrist but what about the ones in my neck, hip, foot etc? They do just stare at you blankly. It is indeed a nerve thing. Mine have decreased in frequency quite a lot over time so I hope yours will too!

Hi @gossamer4448, it's trial and error getting the right ratio of salt and water. While many people are helped by drinking lots of water you also need to remember that the more you drink, the more electrolytes get washed out of your system so if you're drinking a lot of water you need a lot of salt. This is also why sports and electrolyte drinks are recommended. Try different amounts of each over time and keep a diary to see how you feel. I have non-POTS dysautonomia and actually feel better when I cut down on my water intake. This may be completely the opposite for you.

Hi all, the lining of your nasal passages is under control of the autonomic nervous system. Its swelling and constricting is an autonomic function. I felt all the things you guys are describing but my CT scan was absolutely "crystal clear" of any disease (ENT's words lol!). So apparently you don't need to have sinus disease to feel congestion and pressure and the like. https://www.karger.com/Article/Pdf/109439

Hey @potsiebarbie, I get this often in my face. I don't think it's anything dangerous but do ask your PCP about it. It's a nerve thing, sometimes they just seem unhappy. The FitBit I just got for Christmas did it to me too. As soon as a I put it on I started getting a tingling and painful numbness (yes, that's an oxymoron but I don't know how else to describe the feeling) in my hand wrist and hand. And I was so looking forward to having a fitness tracker too. Oh well. I think your tingling and numbness will probably go away and then come back and go like this in flares/cycles if it's part of dysautonomia.

Hi all, A while back I posted about a non-invasive neuroplasticity device called HIRREM (can't recall off the top of my head what the acronym stands for) which is meant to balance your autonomic nervous system and brain. If you search HIRREM on PubMed, 7 or 8 articles come up. I've just been made aware of another device called Cereset which uses basically the same technology and is available at special clinics. I am not promoting this as a cure, however, a new study just came out that shows it was helpful in reducing symptoms of PTSD in military personnel and improving sleep. Right now the Cereset clinics are only located on the North American continent, so unfortunately not possible for me to try myself. Otherwise I'd be there in a jiffy! Improved sleep and emotional state sounds like a great thing to me, even if it doesn't eliminate all symptoms. If anyone is interested the Cereset website is https://cereset.com/ and the recent PTSD study is here: https://www.ncbi.nlm.nih.gov/pubmed/30302866 If anyone ever gives it a go I would be very keen to hear from you. Best, Echo

@Peter Charlton Hi Peter, my T-Wave abnormality is that it turns upside down/inverts when I'm standing. It's the right way up when lying down and then turns upside as soon as I stand. My cardiologist says this is a sign of autonomic instability.

@Peter Charlton You can definitely have dysautonomia without blood pressure and heart rate problems. I have non-POTS dysautonomia and I've seen there are other people on here who have the same. Mine was diagnosed by ECG because of T-Wave abnormalities but other than that I'm like you I have a lot of the symptoms minus the heart rate and blood pressure. Do not give up with the medical care. Insist there are problems. I would go to the dysautonomia international site and read up on the symptoms, print out and take to your doctor. POTS is only one type of dysautonomia. Wishing you luck!

Thanks @MomtoGiuliana, I have had it tested a couple of times in the last two years and it always comes back smack bang in the middle of normal range I might try some B2 supplements though. That is also supposed to help with nerve issues...maybe.