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Everything posted by FarmerAmy

  1. 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.
  2. 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
  3. 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
  4. 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.
  5. 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.
  6. 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.
  7. 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
  8. 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
  9. 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
  10. 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.
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. I just did some more reading on the HeartMath web site. There is an article called "The Science Behind the emWave and Inner Balance Technoligies" at http://www.heartmath.com/personal-use/emwave-science-behind.html It has a really good description of heart rate variability (HRV) and coherence. I always thought that your heart beats at a fairly consistent rate. Not true! It is constantly changing from second to second. Here is a portion of the article that I found particularly helpful: In general, emotional stress - including emotions such as anger, frustration, and anxiety—gives rise to heart rhythm patterns that appear irregular and erratic: the HRV waveform looks like a series of uneven, jagged peaks (an example is shown in the figure below). Scientists call this an incoherent heart rhythm pattern. Physiologically, this pattern indicates that the signals produced by the two branches of the ANS are out of sync with each other. This can be likened to driving a car with one foot on the gas pedal (the sympathetic nervous system) and the other on the brake (the parasympathetic nervous system) at the same time - this creates a jerky ride, burns more gas, and isn’t great for your car, either! Likewise, the incoherent patterns of physiological activity associated with stressful emotions can cause our body to operate inefficiently, deplete our energy, and produce extra wear and tear on our whole system. This is especially true if stress and negative emotions are prolonged or experienced often. In contrast, positive emotions send a very different signal throughout our body. When we experience uplifting emotions such as appreciation, joy, care, and love; our heart rhythm pattern becomes highly ordered, looking like a smooth, harmonious wave (an example is shown in the figure below). This is called a coherent heart rhythm pattern. When we are generating a coherent heart rhythm, the activity in the two branches of the ANS is synchronized and the body’s systems operate with increased efficiency and harmony. It’s no wonder that positive emotions feel so good - they actually help our body’s systems synchronize and work better. Copyright © 2013 HeartMath LLC. All Rights Reserved.
  17. I had my third biofeedback appointment this afternoon. I am still very excited about it. I can already see some improvements. Here’s what I’ve noticed so far: --I feel very relaxed within a few minutes of practicing my breathing. --I almost always have a headache. I have had way fewer headaches since I’ve started the biofeedback training. --I usually have a hard time getting my mind to settle down. It seems like I’m always thinking about a million things at once. The breathing exercises really help me to clear my mind. --My back and neck are usually very tight and sore. I’ve had less muscle tension since starting biofeedback. --My worst POTS symptom is constant lightheadedness. I’ve had a few periods of time when I am not as lightheaded since starting biofeedback. I think this will take a lot of practice and time for me to learn to breathe at a slower rate all the time. I slip back to my fast, shallow breathing whenever I’m not paying attention. But it is very encouraging that I’ve had at least some improvement with my lightheadedness. I’ve found a few apps for my iPhone that help tremendously with my breathing practice—and they are either free or cost just a few dollars: Relax by Saagara – I use this one the most because I can just listen to it with my eyes closed. I use the beginner level and select the most basic options so that I am doing 7.06 breaths per minute. The graphic has you do 1/3 inhale to 2/3 exhale. This is too hard for me right now, so I just do a little extra on the inhale. I do multiple 5-minute sessions throughout the day. And I usually get in one 30-60 minute session per day. I am not usually this dedicated about practicing things. It’s just that I feel so much better while I am practicing that I am very motivated to get in as much practice as possible. Saagara has another app called Pranayama. As far as I can tell, it is the exact same thing as their Relax app—it just has a different graphic. Breathe2Relax by National Center for Telehealth & Technology – This one is good because it has a little more instruction and the graphic they use to guide you is helpful. But you can only set it for a max of 16 breathing cycles. And it crashes a lot. I set the inhale to 3 seconds and the exhale to 3.5 seconds. BellyBio by Relaxline – I just found this app yesterday and it is really crazy! It uses the gyroscope in your iPhone to measure the movement of your diaphragm. It synchronizes the sound of ocean waves or music to your breath. And you can see a graph of your breathing pattern—although this is a bit hard to look at while your iPhone is sitting on your stomach. Inner Balance by HeartMath – This app hasn’t been released yet. But my biofeedback therapist uses a lot of HeartMath tools and this app looks very interesting. Now for a little background on me….I think I have two components to my POTS. This is all based on my own conjecture based on everything I’ve read and learned. I’ve had mild POTS symptoms since I was a kid. I’ve noticed a slow worsening of my symptoms since I was about 30 (I’m now 41). I think this is due to chronic stress and anxiety which have caused my sympathetic nervous system to become way overactive. I had a lot of stressful things happen in my 30s. And then of course I’ve been super stressed about having POTS!! (Who here doesn't have a lot of anxiety related to POTS?!?) I think the second component of my POTS comes from fertility treatments. I did 2 rounds of IVF in 2011 and my health really crashed when I was doing the second IVF round in November 2011. IVF is essentially an endocrine disruptor and I think it just trashed my system. I have had constant lightheadedness since 2011. I think the biofeedback is helping with the overactive sympathetic nervous system component of my POTS. (Again, this is just the idea I’ve come up with on my own.) I think I am slowly recovering from the IVF, but I think that’s a different issue. I’ve tried to practice deep breathing before, but it has never been presented in a way that works for me before. I used to do a lot of yoga, but I could never get the breathing right. I’ve also done meditation, but again I was always missing the breathing component. With biofeedback, I could instantly see what I was doing wrong and what my goal was. The first time I did biofeedback (2 weeks ago) and controlled my breathing, I felt incredibly relaxed within 5 minutes. I also saw my chiropractor this week and asked her about a heart rate variability (HRV) test that she is offering next month. I did a lot of chiropractic work with her in 2009. I was having severe fatigue then (undiagnosed POTS) and she did a bunch of scans on me. It turns out that one of the scans was HRV. We reviewed all the scans I did in 2009. My HRV had “poor coherence”, but I had no idea what this meant. (I’m still trying to wrap my mind around the concept.) My HRV improved over several months, but then it crashed in Aug 2009. August is a very busy and stressful time of the year for me, and in retrospect it makes sense why my HRV was so much worse in August. My chiropractor said she tells people that they can improve their HRV coherence by getting chiropractic adjustments and by practicing deep breathing. I did a bunch of adjustments, which helped a little, but unfortunately I didn’t understand enough about the deep breathing in 2009. I really needed a lot of guided instruction on deep breathing. Coincidentally, I worked on HRV with my biofeedback therapist today. She was able to use some of her equipment (a pulse sensor that was clipped to my ear) to rate my HRV and guide me to higher coherence. My mind felt so calm and clear when I was able to achieve high coherence. But of course my HRV dropped back to the normal, poor level for me as soon as I stopped concentrating. My therapist is going to let me borrow her portable pulse sensor so I can practice this throughout the day. Like I said, the concepts of HRV and coherence are still new to me. I’ve been reading about them on the HeartMath web site. They have a lot of helpful information and here is one quote from their Research page that especially caught my eye: Heart-Rate Variability and Autonomic Function: IHM conducts ongoing research into heart-rate variability (HRV), a measure of the naturally occurring beat-to-beat changes in heart rate. HRV analysis is a powerful, noninvasive measure of autonomic nervous-system function and an indicator of neurocardiac fitness. HeartMath has published research demonstrating how HRV varies with age and gender and on the use of HRV analyses to assess alterations in autonomic function in conditions such as panic disorder and chronic fatigue. This is further evidence to me that my poor HRV measurements are related to my POTS. HeartMath has a lot of info on autonomic function on their web site. I know this is a super long post. But I’m trying to include as much detail as possible so that you can see if anything grabs your attention and makes you think that biofeedback might be a good fit for you. I really like the fact that there are no meds involved. And it is relatively inexpensive ($80 per session) compared to all the other medical stuff I’ve done for my POTS. I’ll keep posting as I get further into my biofeedback practice. I know that I will do some EMG feedback (muscle feedback), but my therapist said she wants me to really get my breathing consistent before we throw the EMG into the mix. Amy
  18. You mentioned that your total blood volume is normal. And you also said that the saline IV likely helped because of all the salt--not the fluids. Do you understand this? I thought you are supposed to salt load because the salt helps to retain fluids, thereby increasing your blood volume. But it seems this is not true in your case. The salt is having some different beneficial effect.
  19. I feel for you! The psychiatric meds are so tough! It is a little bit of trial and error--which you really don't need when you feel like you're loosing it! It took me a while to learn how the doses of Klonipin affect me. Now I generally just take 0.5mg, but if I'm feeling really agitated, I will take 1mg. Have you taken an SSRI before? I have taken anti-depressants off-and-on for about 7 years. For the last few years, I've been "on". The last time I had major depression was a living nightmare. I was a wreck for about 6 weeks. My doctor was somewhat conservative in increasing my dosage. And I was reluctant to call him when things weren't working fast enough. I thought I just had to be patient and wait it out. That was so not worth it! I was really hysterical one night and I called my doctor's after-hours number. He was out of town, so I talked to his backup doctor (actually, I sobbed to the backup doctor). I feel really fortunate that this happened because the backup doctor had me increase my dose by a lot and within about 3 days my mood was completely back to normal. So lesson learned--don't be shy when you're suffering. Keep calling your doctor if your meds aren't working. Don't try to tough it out because they can normally help you with anxiety and depression. Oh, and one other piece of advice....watch all the feel-good movies you can find on Netflix until you are feeling better. They really helped to distract me while I was waiting for the meds to kick in. I think I watched the whole Harry Potter series in a few days. I also watched a bunch of Jane Austen movies, Good Will Hunting--anything that I could get absorbed in just to take my mind off that fact that I was in the "abyss". xo Amy
  20. I've done a ton of stuff. It is a long answer, but I'll try to put some of it down here.... She has ordered several tests for me through Genova Diagnostics (NutrEval), US Biotek (food allergy), and Metametrix (GI Effects). At first she diagnosed me with adrenal insufficiency. She had me taking some different types of cortisol--Phytisone, Cortrex, and Isocort (she uses mostly Thorne brand supplements). I actually felt some improvement on the Isocort. But it really upset my stomach. I usually don't have any GI issues, but she said that if I had an overgrowth of intestinal yeast, the Isocort would aggravate it. So then we did the Metametrix stool sample. My results came back with a +2 on the yeast/fungi section. So I started a very restrictive diet to try to address the yeast problems. It is sort of similar to the Paleo diet, but not exactly. I started the diet in October. At first it was *really* hard because I felt like there wasn't anything I could eat. But now I've totally adjusted to it and it isn't a big deal at all for me to be on the diet. I was also doing oregano oil when I first started the diet. I was miserable for about a month. I had a non-stop smashing headache and my knees and hips really hurt. My doctor said I was having a severe herxheimer reaction and she took me off the oregano oil. I felt back to my normal self within a day or so. Now she has me doing Lauricidin, which is a coconut extract. I am doing much better on that. I also eat a lot of coconut (oil, milk, water, dried) because it is anti-fungal. I am *certain* that the diet has improved my overall health because it is such a good diet, but I haven't seen much improvement in my POTS symptoms yet. I asked my doctor about doing IV fluids and she prescribed Lactated Ringer's for me. Unfortunately it didn't do anything for me. I just got some saline IV fluids, but I haven't tried that yet. I have not done a Myers cocktail. My doctor has had some patients with POTS, but I don't think she's had that many. A few times she prescribed something that she thought would really work. But nothing has been dramatic yet. She thought the cortisol would really help. She also had high hopes for vitamin B12 injections, but again I didn't notice anything. I have taken a boat load of supplements--I am a slave to my pill box!! Even though we haven't had much success yet, my doctor is very willing to do research on POTS for me. She has been in touch with a Functional Medicine endocrinologist to get his opinion on my illness. I'm sure I am forgetting something because we have tried so many different things. Let me know if you have any other questions. Amy
  21. Oh dear. I am worried about you. I know how bad severe anxiety and depression can be. I hope you find a way to pull through. Amy
  22. I have been going to a Functional Medicine doctor for about 6 months. I've been doing things to address my adrenal insufficiency and fungal dysbiosis. No major improvements with this doctor yet, but I really like her approach and plan to stick with it for a while longer. Good luck! Amy
  23. My BP is 100/70 on average. I'm now starting to think my lightheadedness has more to do with cardiac output--although the concept of cardiac output is new to me. Yes, my lightheadedness baffles me, too. I wish I understood the mechanism behind it better. I can get it to go away in a few situations (being freezing cold, being in the pool or ocean, or getting my heart rate up high). But it sure would be nice to find something that works more consistently.
  24. I have near-constant lightheadedness, too. Although yours sounds like it might be worse. Meds don't seem to help my lightheadedness and compression stockings don't seem to be doing anything either. I do have two things I'm working on that might have some potential I have a friend who improved dramatically after doing the Levine exercise protocol and she has convinced me to look into it. I can go for a walk, but honestly I can't imagine running or riding a bike. I think I would be too miserable. However, this past weekend I went on a hike and felt pretty good. It was on a trail that was on an incline, but it wasn't so steep that I couldn't walk fast. I felt like my usual lightheaded self when I started out. But I really picked up the pace and got my heart rate up to 140 and my lightheadedness almost disappeared. It came back as soon as I slowed down. But I actually felt good as long as I was keeping my heart rate up. This makes me think that some regular intense exercise might really help. I'll be sure to post my progress. The other thing I'm doing is biofeedback. I've only had 2 appointments so far, but the results have been amazing. I still feel lightheaded, but it is really calming my system down and I am hopeful that it will help with the lightheadedness. I have noticed that I can stand up longer if I practice my breathing when I'm standing. Again, I'll post more about my biofeedback experience. Amy
  25. I am so sorry that things are so hard for you. I really hope you can find some relief. Amy
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