FarmerAmy

I did 2 unsuccessful rounds of IVF in 2011. During the second round my POTS flared terribly and I am still disabled from it. In retrospect I probably shouldn't have messed with my endocrine system so much. But all my doctors said it should be safe to do IVF with POTS. I'd be happy to answer any questions you have. The IVF process is crazy and totally surreal. Amy

Just wanted to let you know I'm thinking about you and hoping you're getting through the anxiety. I know it is so hard and scary. Amy

I get dizzy, too. If I'm moving fast and my heart rate is up, I feel a lot better. But if I slow down at all I get dizzy right away.

I'm very sorry you are dealing with this! I suffer from anxiety, too, but I have found ways to keep it under control. I wish you could, too! Have you been to a cardiologist? That is the doctor who would most likely diagnose you with POTS. And the tilt table test is the most reliable way to confirm or deny a diagnosis. It does seem to me that the tachycardia and the anxiety are related. Anxiety just does such horrible things to your whole system :-( Good luck! Amy

You should definitely talk to your doctor about increasing your Klonopin dose. 0.5mg is pretty low. When I am having bad anxiety I take 1mg or 1.5mg and it totally knocks me out--which is what I really need when I am having severe anxiety. I bet you can call an after-hours number for your doctor tonight or first thing in the morning.

I actually don't have pain with my POTS. My worst symptom is lightheadedness. I also have fatigue, weakness, shortness of breath, and tightness in my chest. I know I need to exercise, but most things make me so dizzy. I can't imagine getting on a bike--I'd surely fall off! And a rowing machine would send me reeling. That's why I've been trying to think of things I can do that wont make me horribly dizzy. On my hike yesterday I really had to keep walking *fast*. If I slowed down at all I got horribly lightheaded. It seemed like the trick for me was to walk fast enough to keep the blood going to my head. It was also cold out and I know that helped tremendously. I have always had exercise intolerance. I was doing triathlons 10 years ago, but I always felt terrible during the training. I'd go for a 5 mile run in the morning then have to take a 2 hour nap afterwards. I always felt like something was holding me back. Now I realize it was my POTS!! However, this is just my experience. I am convinced that we all have a myriad of different illnesses on this site. I try to pay attention to people who seem to have similar symptoms to me and then I try to see what works for them.

I am so sorry you are feeling so terrible. I think we have all been there. POTS is something you can't imagine even in your worst nightmare. Do you have emotional support? I feel like the emotional side of POTS is just as bad as the physical side. How are we supposed to deal mentally with this living ****?!? I see a psychologist every other week. She specializes in helping people cope with chronic illness. She has really saved me from losing my mind through all of this. I've also decided that I can be sick or I can be sick AND horribly depressed. I try hard to just be sick and keep the depression at bay. I'm not sure this is true for you, but my symptoms are so much worse when I am upset. I feel hopeless and that triggers my anxiety and then it's all downhill from there. I do so much better when I focus on the positive things in my life. (I'll give you one positive thing to focus on....I'd give anything to have a newborn. I'm 41 and infertile. Even though motherhood isn't what you pictured, you are SO lucky to have a baby!) I've learned that I really need to control my anxiety. I used to do yoga, but I'm too sick to do that anymore. Now I do breathing exercises and they help tremendously to calm me. I recently downloaded two breathing apps to my iPhone that I love. They're called "Relax" by Saagara and "Breathe2Relax" by NCTT. They really help to calm me down when I am flipping out about how sick I am. This illness is so cruel and it is such a lonely journey. My life is far from what I dreamed it would be. But when I look around, I really do have a lot to be thankful for. I hope you can find some comfort and peace.

I have been reading all the comments in this thread to motivate myself. I've exercised for the past year, but I've never tried to get my heart rate up. Now I'm trying to do higher intensity exercise and so far I feel good while exercising. The key for me is to not be miserable while exercising. I just know I won't do it every day (or even most days) if I feel terrible every time I get some exercise. Cold is my best friend. Now that it is winter here, I've been getting out a lot more. Today I went for a 5+ mile hike and felt great for most of it. I have to walk **really fast** or I feel terrible. I was doing at least a 12-minute mile (5 miles per hour), which is about as fast as I can walk without breaking into a run. That's fast enough to get blood to my brain and keep the lightheadedness at bay. I'm also thinking I should get myself to the pool. I think water aerobics or even just treading water for a while would do the trick. I feel good when I am in the pool, so I think I would do this consistently. I just don't think I could push myself enough to run these days. I used to run when I was healthy--I've even done a few half marathons. But I feel horrible after running for even just a few minutes and just don't think I could force myself to do it consistently.

Hooray!!!

Yes, there can definitely be too much water. I don't know what amount is too much. You would probably have to gulp several gallons all at once to get into trouble. I would ask your doctor about an upper limit for water consumption.

I just have a generic Kroger brand bp monitor that I got at the grocery store. I paid $20 for it. My friend is a nurse and I had her measure my bp with her professional cuff and compare it to my Kroger monitor and the Kroger monitor was dead-on.

Sorry you had a terrible appointment and thank you for this post! I can't believe they had you sit in an uncomfortable chair for over 2 hours in the AUTONOMIC CLINIC. Seriously?!? You would think this would be the one place where they might have recliners in the waiting room!

Badhbt, I am just going to a local biofeedback practitioner where I live in Colorado. She does not specialize in POTS, but she has worked with other POTS patients. She is charging me $80 per session, which seems pretty reasonable to me. It sounds expensive and exhausting to go to Dallas!

Thanks for the book recommendation Katybug! I will definitely read it!! Future, I can't speak to the relationship between breathing rate and heart rate. The more I learn, the more I realize how much I don't know/understand. The body is so complex and I have realized that I have been looking at things in overly simplistic terms. But with that said, here's my current understanding. I know that my sympathetic nervous system is over-activated. My therapist said that breathing fast (hyperventilating) triggers the sympathetic nervous system and sets off a whole chain of reactions in the body. I slowed my breathing way down and felt a huge change within about 5 minutes. I did some reading last night and came across Chronic Hyperventilation Syndrome. Nobody has ever mentioned this to me before, but it fits me to a T! I downloaded a breathing app to my phone and I am already addicted to it. It feels so soothing for me to focus on my breathing that I don't want to do anything else!

I just downloaded a free app to my iPhone. It's called Breathe2Relax. It guides you on breathing and so far it is really helpful!

Don't worry! You'll get through it!! I felt terrible when I did a TTT, but they gave me IV fluids at the end of the test and I actually felt pretty good for a few hours after the test. I did not pass out during my TTT. They kept me standing for 20 minutes and my heart rate dropped to 60/40. I couldn't really see or talk after 20 minutes, so they decided to end the test. I feel like I got a lot of valuable information from my TTT and it was totally worth feeling bad. I do not think your TTT will be inconclusive. It seems like you have severe symptoms and they will certainly see that in your test. Hang in there! You can do it! And you will be through it by this time tomorrow! Amy

Kitt, I will submit the bill to my insurance, but I am not sure if they will cover it. I have crummy insurance, so I am used to paying for most things out-of-pocket. Katybug, I feel like I've known about some of the benefits of deep breathing, meditative breathing, etc. But this was a good way for me to see how "off" my breathing is. I'd never realized that I breathe so fast.

Bananas, I would just get a timer or stopwatch and count how many breaths you take in a minute. Try to breathe at your normal rate.

I had my first biofeedback appointment today and I am so excited about it! I talked with the therapist for a while then she hooked me up to some equipment to monitor the movement of my diaphragm. She said the most striking thing is that I breathe really fast. I was taking 22 breaths per minute and she said anything over 18 is considered hyperventilating. So basically I have been walking around hyperventilating all the time! She had me follow a rhythm to get my rate down to 11 breaths per minute. It felt so good and I was totally relaxed within a few minutes. We'll see where this all goes. Who knows what it will do for my lightheadedness. But clearly my nervous system is overstimulated and I am so excited to find a tool to help calm it!

I take 0.5mg of Klonopin at night. It really helps with my chest pains and tachycardia. It also knocks me out so I get a good night's sleep. My (very unscientific) theory is that my ANS is overstimulated and the Klonopin helps to calm it down. I wound up taking Klonopin for POTS in a roundabout way. I took it for anxiety a few years ago and noticed that I didn't feel lightheaded while I was taking it. I discontinued the Klonopin after a few months. Then last year I was having bad tachycardia and chest pains. I had some leftover Klonopin and tried it. I felt so much better the next day! I asked my doctor and she gave me a prescription for it. It doesn't do much for my lightheadedness now, but it helps a lot with my tachycardia and chest pains.

I have learned not to fight unhelpful doctors--just fire them! I think you will absolutely find doctors who are unable/unwilling to work with POTS patients. I think the best thing to do is to move on and try to find a more helpful doctor. There's no point in wasting your time and money on a doctor who doesn't believe you. Good luck! Amy

I would call your gastro and ask them for advice on where to go. It's probably the quickest way to find out.

Great news!

Kelly, Thank you so much for posting this! I feel like I would really like a more specific diagnosis so that I can better understand the mechanisms for my POTS. Right now I feel like I am shooting in the dark whenever I try a new treatment because I don't understand what I'm trying to tweak in my body. Amy

Nevermind! I posted too quickly! I did a search and saw that other people have already posted about Dr. Kyprianou. I live in a town where there is a ton of alternative medicine. I think I will look into biofeedback locally. It's got to be less expensive than the $4-5,000 it would cost to do the program in Texas!