FarmerAmy

I have 2 things that really help me. Kavinace Ultra pm by NeuroScience has been amazing. It's a mix of GABA, serotonin, and melatonin. It's a little pricy for a supplement, but it is well worth it to me. It is much more effective than melatonin for me. I sleep deeply and don't feel foggy in the morning. I also listen to audiobooks while falling asleep. I have a subscription to Audible. And I also use an app called OverDrive that lets me check out library audiobooks. It takes me a long time to fall asleep, but if I am listening to a book, I fall asleep in under 45 minutes. I also turn the book back on if I wake up for more than a few minutes in the middle of the night. This keeps my mind from swirling around. I had to find some comfortable ear buds. And the noise cancelling ones double as ear plugs. Between the Kavinace Ultra and the audiobooks, I almost never have a sleepless night.

I just saw this on Facebook. HeartMath is letting you download their "Coherence Coach" for free through Nov 30. The Coherence Coach is a computer program that will teach you to do some basic biofeedback work. This is a great program if you think biofeedback might help you. Here's the link to download: https://www.facebook.com/InstituteofHeartMath/app_1424986654406363?ref=ts

I tried sending a message to Gemma, but wasn't successful. I thought I would post my message here in case others find my message helpful. Hi Gemma, I'm so sorry I'm just getting back to you. I haven't been on DINET for a while. Biofeedback helped me a lot. It didn't "cure" me, but I think it gave me a lot more control over my symptoms. I think it depends what is causing your POTS symptoms. I know I have adrenal fatigue. I also think my sympathetic nervous system is overstimulated. Biofeedback is perfect for helping someone like me. I live in Boulder, CO and found a local biofeedback practitioner. I highly recommend finding somebody who uses Heart Math software/equipment. Heart Math is a respected institute that has a lot of scientific research backing up their products. I think my biofeedback sessions were about $80 each and I went to 6 or 8 weekly sessions before I learned enough to continue on my own. I now use the Inner Balance app by Heart Math on my iPhone. My first biofeedback session was really eye opening. I leaned that I breathe so fast that I am basically hyperventilating all the time. My instructor taught me how to do deep belly breathing. For the next week or two all I wanted to do was lie down and do belly breathing. It was the first thing that ever helped me relax my mind and body. I learned about heart rate variability (HRV) and how important that was for me. We also looked at things like body temperature and muscle tension, but those weren't as big for me. You would probably know after 1-2 sessions if biofeedback could help you. And I'm pretty sure the Heart Math web site can help you find a practitioner in your area. Good luck! Amy

Acceptance has been a huge part of my recovery. I'm not "cured", but my POTS symptoms are a lot better than they were 2 years ago. I was on an emotional roller coaster for a long time. Always waiting for the next appointment with a promising doctor. Trying the things they were certain would make me better. Then feeling crushed when I was still so lightheaded I couldn't get out of bed. I decided that I could either focus on how miserable I was or I could be grateful for the many good things in my life. I chose the second one. I also decided to take a break from doctors and other health care practitioners. They weren't really helping me, but they were sure emptying my bank account! I have one Functional Medicine doctor I really like, but I only see her every 6 months. I have realized that I am my own best advisor on my illness and health and that it will only make me crazy to keep chasing after doctors who might be able to help me. I might change my tune in the future, but I am pretty happy with where I am now. This is despite the fact that my POTS symptoms have flared up in the past month. I've tried to stay calm and use all the tricks I've learned. I know this approach is helping me from getting worse.

I got my cooling vest from Aquality Water Systems. I got an evaporative cooling vest, but they also have phase-change vests. One note, you want a snug fit with your vest. You need the vest touching your body in order to conduct the heat away from you. My vest to too big and I'm always trying to wrap it tighter around myself. Otherwise it just feels wet and muggy.

Ugg! That sounds horrible! I have heat intolerance, but not that bad. Last summer I always had ice packs all over my body. I kept them on the back of my neck, on my stomach, and on my legs. They really helped a lot. I also took cool showers if I got too overheated. Even 5 minutes in a cool shower helped a lot. You mentioned being worried about getting a flat tire, etc. I wonder if it would be a good idea for you to carry around some "instant ice". That way you could crack open an ice pack if you got into a desperate situation. I got a cooling vest, which helped a lot. But sometimes I would just wet down my clothes. I know I looked ridiculous walking around in pants that were dripping wet, but it certainly helped to cool me down. Of course, this only works in an arid climate.

This is sort of goofy, but I have a head massager like this one on Amazon: http://www.amazon.com/Head-Massager-colors-may-vary/dp/B001IHXFQK It is very relaxing to use. I have also learned diaphragmatic breathing recently. This has been amazingly effective with my headaches! I normally have a constant headache (sometimes severe) and the breathing has made it so I actually do not have headaches at times. It feels amazing! Amy

I have been using the HeartMath emWave to work on my HRV coherence. Today I noticed a pattern in my HRV throughout the day. In the morning and during the day it is very difficult for me to achieve HRV coherence. However, I am much better at achieving coherence at night. This goes along with several other observations I've had. My POTS symptoms are the worst in the morning and I feel bad throughout the day. But I normally feel better late at night. Also, it has always been hard for me to focus during the day--my thoughts are too scattered. I generally wait until evening if I need to really focus on something for work. I feel like monitoring my HRV has given me a window into what is going on with my body. Has anybody else experienced this daily variation in HRV coherence? I'm trying to figure out where to go with this new insight. Amy

I totally support you taking time off of work. I know that my work adds to my stress and my POTS symptoms. I am self-employed and this is my slow time of year. I know I am feeling better now because I can focus more on my health than my work. Your busy tax season lasts another 10 weeks. I think it would be hard to "tough it out" for that long. And really, there is no good time for you to take off work. Also, the world won't end just because you can't be at work. I can relate to worrying about finances. My husband and I own a vegetable farm and our income was low enough when I was healthy. Now it is even harder because I am sick and can't work much. But really, the most important thing is my life and my health. It's not going to do me any good to dig myself an early grave by working too much when I really need to recover. (Remind me that I said this when I am really busy in August! ) Your husband and kids will do best if you are happy and healthy--not stressed and sick. Do what you can to get better. Good luck with your decision! Amy

I personally would keep looking for a different doctor. It sounds like this one has his own opinions and doesn't take you seriously. I don't think you will be able to change his attitude by sending him articles. I think the patient narrative is very important and I think it is bad that this doctor is so dismissive of your story. You know yourself better than anybody and I'm sure you have noticed all kinds of symptoms that are clues to your medical problems. Your doctor should be very interested in these clues. Have you tried looking for a cardiologist who knows about POTS? That might be a better option.

Hi Abby, If it were not for "Dr Google", I would still be wondering what in the world was wrong with me! I went to a sleep specialist, a neurologist, a rheumatologist, and several alternative health care practitioners and NONE of them could figure out what was going on with me--even though I gave them a very thorough description of my symptoms. I am the one who diagnosed myself with POTS after reading tons of books and spending many hours with "Dr Google". I then went to a cardiologist and had a TTT and this confirmed my diagnosis. I'm tired of doctors having such snooty attitudes when they can't even give us a proper diagnosis! I was taking an SSRI when I did my TTT. My test showed clear dysautonomia and POTS. I think you will find different opinions about whether or not you can be taking meds when you do testing. I was having POTS symptoms despite the fact that I was taking an SSRI and I really don't feel like my meds interfered with my test. Does the SSRI help you at all? If not, do you need to take it? Does your heart rate increase by 30 bpm within 10 minutes of standing? That is the definition of POTS. I feel like you have unfortunately found doctors who are not very compassionate. I would keep looking until you find someone who seems like they genuinely want to help you. My best ally has been a doctor who practices Functional Medicine. She is not a dysautonomia specialist, but she is familiar with POTS. And she really listens to me and does research to try to help me. Amy

I am asking this question because I am doing biofeedback where I live in Colorado. I know Dr Kyprianou uses the emWave by HeartMath. Are there any other tools she uses? With the biofeedback I am doing, we started with diaphragmatic breathing. I also had a temperature sensor on my hand so I could practice warming my hands up. I just started using the HeartMath emWave. I also know that I will do some EMG muscle feedback. Are there any additional tools or techniques that Dr Kyprianou uses? Thanks! Amy

So sorry you had to go through this! Do you like your cardiologist? Maybe you can tell him what happened and come up with a different backup plan so you don't have to go to the ER again. Also, would your cardiologist write you a prescription to get IV fluids? My doctor wrote me a prescription for IV fluids. Then I had a home health care nurse come administer them. Walgreens Infusion Services is one place that can deal with IV fluids. It might be nice to have a plan like this in place rather than having to go to the ER and deal with some crappy doctor there. Amy

Hi Abby, I think I can relate to the "free floating anxiety", although I haven't heard that term before. I think my long-term anxiety has caused my ANS to become disregulated. So it's not like if I just get my anxiety under control everything will be fine. I need to retrain my ANS so that my body doesn't have such an exaggerated response to stress and anxiety. You can see my recent thread on biofeedback and how this is helping me to retrain my ANS. Amy

Angela, I'd love to hear about your experience when you go to the POTS treatment center. I'm curious what they will teach you and what equipment they use. It looks like they use the HeartMath system. I wonder if they use other systems. Keep us posted! Amy