FarmerAmy

Nicely done!

Here is a good article on Leaky Gut Syndrome http://drjakefratkin.com/articles/leaky-gut-syndrome-a-modern-epidemic It explains things both in terms of Chinese and Western medicine.

Thanks for sharing your story. I can't believe what a long journey it's been for you!!

I haven't worn mine over the summer, but I will probably start wearing them again now that it's cooler. I can't totally remember, but I think I got mine from Bright Life Direct and I think I got Jobst brand. I got thigh-high and open toe. It would drive me nuts to have my feet wrapped up all day! And full length are too big of a hassle every time you need to use the restroom.

Hi Steph, I just wanted to let you know that I am thinking about you. It is so frustrating to not have answers and to not have anybody to turn to. I feel like I will put a flurry of effort into finding answers, but then I have to take a break for a while. It makes me feel crazy if I focus on my POTS all the time. Unfortunately I have a few friends with chronic health problems (only one with POTS). I find that it is helpful to keep in touch with them--just so I can talk to other people who "get it". I also see a therapist who deals with people with chronic illness. It is really nice to have somebody to listen and help me sort through everything. Sorry you're having a rough time Amy

I wonder if you have adrenal insufficiency. Your comment about crashing at 2pm is what makes me think this. There is a book called Adrenal Fatigue by Dr Wilson that might be helpful. I just wrote a post about Functional Medicine. I have found that it is much more appealing to me than conventional medicine. The idea is to understand the underlying cause of disease instead of just treating the symptoms. You can learn more at www.functionalmedicine.org.

Thanks for the reply. Have you seen any health improvements with your functional/integrative doctor? I feel a little better on the cortisol supplements. But I feel like there is still a major piece of the puzzle missing.

I wanted to share my recent experiences with you. I've been going to a doctor who practices Functional Medicine. I am new to the idea of Functional Medicine, but it addresses the underlying causes of disease. I have high hopes for this new doctor. I am tired of taking meds that only address symptoms!! My new doctor has done a bunch of testing. So far we've come back with adrenal insufficiency and possible candida overgrowth (still waiting on more results for that one). I am taking a lot of supplements and am on a very restrictive diet. In the past few days I've felt a little worse, but I think I am having difficulty adjusting to my new diet. It's hard to hope that I might have found a doctor who can help me--I've been let down too many times before. But so far she's the most promising doctor I've found. I learned more about Functional Medicine by going to www.functionalmedicine.org Anybody else have experience with Functional Medicine? I'd love to hear about it.

I have been going to a new doctor for about 3 months. She is an MD, but practices functional medicine. I've done blood, urine, and stool samples and have sent them off to labs. I don't know how to refer to these labs. They are scientific, but a regular doctor or hospital would never use them. The labs we've used so far are Metametrix, Rheim, and Genova Diagnostics. I have found their web pages interesting, and the web pages can also help you find a health practitioner in your area. Some of the tests have shown that I have low adrenal function (a diagnosis that traditional doctors would poo-poo). Now I'm waiting on results to see if I have Candida or fungal G.I. problems or food allergies. I am about to go on a very restrictive diet--no sugar, carbs, gluten, etc. I really think it will help me at least some. I think my problems were caused by a number if factors. But about a year ago I did invitro fertilization and I think that really ruined me. I took a lot of anti-biotics and also hormones. Both of these can cause severe G.I. problems.

I wonder if you could drink green juices--like a kale smoothie. Have you watched "Fat, Sick, and Nearly Dead"? It is a great documentary and very inspiring!

Yes, I feel like that is one of the hardest parts of having a chronic illness. Most people don't "get it". People tell me I look great on the rare occasions that I am out and about. And people are constantly asking my husband if I am feeling better yet. All this feels like it is diminishing the daily struggle I go through. It's like it's too much for most people to deal with the fact that I am doing so poorly. I feel very lucky to have a supportive family. But even they don't totally get it. I wish there were more support groups out there. It would be nice to connect with more people who have the same experience. Every day is a struggle and most people can't comprehend what that is like. I think they feel like you must just get used to it. I guess I have maybe gotten used to how hard my life is, but it still really hard every day. It's hard not to have a never-ending pitty party Thank goodness for all of you out there on DINET! It's nice to know that some people out there understand!

Hi Cammee, I hope you are getting the support you need! I feel like it is terrifying when you first start going through this. But after a few months you begin to adapt and find things that work for you. Best luck to you! xo Amy

My doctor recommended that I use coconut oil and coconut milk as they are both anti-fungal. I haven't started using it yet, though.

This summer has been hard for me, too. I've tried all kinds of things to keep cool. Is it possible for you to spend most of your time in the air conditioning? I even turn on the A/C in my car 5-10 minutes before I have to get in it (wasteful, I know!!!) I also bought a cooling vest. I live in arid Colorado, so I have an evaporative cooling vest. This wouldn't work where you live, but a phase-change cooling vest probably would. I also use a lot of ice packs. I often have one on the back of my neck or I will put them on my stomach or under my arms. I'll even sleep with a few ice packs if the house is too hot. I've also found that I feel great when I go to the pool! It feels so good to get a little activity and my POTS symptoms almost completely disappear when I am in the pool. I also take Klonopin. I feel like it really helps my symptoms--but it just goes to show that everybody is different.

Is it possible for you to find a different doctor? I think you are more likely to have success with a doctor who actually knows about POTS.

You aren't taking Midodrine are you? I had difficulty urinating when I took it.

I have a history with Klonopin...I'll try to make it as short as I can, but bear with me! I have had POTS symptoms most of my life, but I have been going steadily downhill for 5+ years. (I only found out in the last year that I have POTS.) About 3 years ago I had an episode of severe anxiety and depression. My psychiatrist prescribed Klonopin for me--it was a life-saver for getting me through the anxiety. I also have a vivid memory from that time...I was driving one afternoon and I thought to myself that it was strange that I didn't feel like I needed to lie down. I ALWAYS feel like I need to lie down. But I thought it was just that I was feeling better from not being so depressed and anxious. I stopped taking the Klonopin after a few months. It was really hard to stop taking it. I had really bad headaches and insomnia. I would go a few days, then break down and take just a little crumble of a Klonopin pill to get me through the withdrawal symptoms. Finally I got a really bad head cold and was in bed for a few days and decided to go for it! I was feeling super crummy anyway, so I decided it was a good time to get through the Klonopin withdrawal. Fast forward a few years....my POTS symptoms really flared up last November. I also figured out around that same time that I have POTS. I have been severely debilitated since then. My cardiologist had me try midodrine, metoprolol, and florinef. None of those helped me. I was having severe tachycardia and chest pains. The chest pains were so bad that I could not think of anything but how bad my chest pains were. I stopped taking all the meds the cardiologist prescribed. But I was still feeling terrible. I got really desperate one night and took a leftover Klonopin pill that I had. I felt so much better!!! It stopped my chest pains and my tachycardia is not nearly as bad. I told my cardiologist about my improvement and she said she was ok with me taking Klonopin as long as my phychiatrist prescribed it, which he did. The psychiatrist said he is not worried about me becoming addicted because I am taking such a low dose (0.5 mg - 2x per day). I've been taking Klonopin for about 6 months now. I think I've probably built up a little tolerance to it, but it still helps tremendously with the chest pains and tachycardia. It doesn't seem to help at all with my dizziness or fatigue, but at least I don't feel terrible while I am lying down. I know that it might be rough if I decide to stop taking Klonopin some day, but I decided that it was worth it. It is the only thing I have found so far that seems to help my symptoms. I hope that helps. I'd love to hear about your progress--especially because I suspect we have a similar form of POTS since we both respond to Klonopin.

Thanks for the feedback everybody! I've had POTS symptoms most of my life. I've been slowly going downhill for 5+ years and in November my symptoms really flared up and I have been disabled since then. I *think* the flare up was triggered by taking progesterone, but I will probably never know for sure. My current question is regarding what is causing my ongoing symptoms. Is it MCAS, SFN, Chiari, etc? At one point my cardiologist told me that understanding the mechanism wasn't that important. But now I realize this is crazy talk! How can I possibly improve my symptoms if I don't know what I'm treating??? I am currently going to an MD who practices integrative medicine. We'll see if she comes up with anything. And my cardiologist said she would probably refer me to another doctor. Like many of you have probably experienced, I am sick of going to doctors. I go back and forth between just accepting my current health problems and trying to find an answer. But I think I have decided to persevere in order to try to figure out why my body has turned on me and if there is anything I can do about it.

I'm wondering if many of you know the root cause of your POTS. I don't, but I'm starting to believe more and more that this is critical to treatment. If you do know the root cause, how did you figure this out? I am struggling with where to turn to find people who might be able to help me.

Very interesting! Thanks for sharing! Some of the things in the video really resonated with me. I'm going to call the radiologist in the morning and ask some questions about the MRI I had a few months ago.

I am 40 and get chest pains when my other POTS symptoms flare up. I know that my chest pains are POTS related, but they are distressing nonetheless.

I love being in the pool--especially if it's on the chilly side. I feel almost normal when I am in the pool. I usually swim a few laps and tread water. Nothing strenuous, but it sure feels good to get some exercise!!

I tell people that I have difficulty standing up. If they ask more questions I tell them I have a fainting disorder (even though I've never passed out). The word "fainting" really seems to resonate with people and they get it that I cannot stand up.

For right now I mostly just splash around in the pool and tread water for a bit. I do a few laps with my head above the water, but I think serious swimming would make me feel crummy. All of my doctors tell me to exercise--and treading water is certainly exercise! I don't know if it will make my POTS symptoms better, but I DO know that prolonged inactivity will make me worse over time.

This summer in Colorado has been brutal and the heat is keeping me on my back most of the time. But I've been going to the pool a few days a week and it feels great! The cold water and the increased pressure on my body from being in the water really help my circulation. My legs have been feeling very achy and it helps to move them around in the water. And I don't have to fight gravity nearly as hard. I swim a few laps, but mostly I just tread water and splash around. I almost don't feel ill when I am in the pool and it is wonderful to be able to do something active.