McKenzie

Thank you for sharing this! I was really wondering about my breathing. I find myself either really shallow or not at all and have to take several deep breathes. I also wake up with a start, I believe because my breathing was too shallow. I haven't had a sleep study done, but that won't help me during the daytime anyway! It's especially bad if I let myself get overly tired.

My migraine began with POTS symptoms too. They gradually damped up to a point where they never really went away. I have new glasses now to correct Vertical Heterophoria, my migraines are only occasionally now. I still get blurred vision/double vision, that is also something I didn't have pre-POTS.

I was tested by my PCP for Lyme with the usual methods. But then I learned on here that normal testing has lots of false negative results. My PCP is willing to treat with antibiotics and retest. Since the tests are looking at the immune response and the immune response is compromised by the Lyme, it my show up after 6 weeks of treatment. Dr. Mercola did an interview with Dr. Klinghardt on Lyme. Very informative. http://articles.mercola.com/sites/articles/archive/2012/02/05/dr-dietrich-klinghardt-on-lyme-disease.aspx?e_cid=20120205_SNL_Art_1

Interesting, it seems that taking Benadryl would have the opposite affect. But I see why it would work. I do the same thing, it usually takes me about 20 after laying down before I can take a deep breath. And I wake up shortly after falling asleep, by taking a deep breath. I haven't had a full work up by a pots doctor yet, so maybe that should be my next step. I haven't been able to work a full day since October. I keep trying, but when I work more than 4-5 hours, I seems to catch up with me rather quickly.

I was diagnosed with NCS, I suspect I also have CFS or Lyme disease. When I get hit with a wave of fatigue/weakness, I find that my breathing becomes so shallow that it makes my symptoms worse. Anyone have any tricks or treatments to help with this?

Yep, I have this too. I don't remember hearing my blood pumping and swooshing before my POTS flare began, eh, maybe occasionally, but now I hear it all the time and it gets much more intense when it's time to lay down and take a break.

I've had well water most of my life too. Fir about 12 years, it was a deep well and the rest was from a shallow, spring-fed well, what we use now is filtered ground water.

I watched a video on Kangen water and wondered if any of you are using it or if you've tried it.

If you look at the times people post on this forum, it's clear to see dysautonomiacs are also insomniacs LOL!

I had two doctor appointments this week. The first was on Tuesday with my EP Cardiologist. We drove 1 1/2 hours to get there, waited 45 minutes past my appointment time and the doctor was in such a rush he wasn't even in the room for 5 minutes. I learned nothing but got a new med to try. He isn't interested in the POTS symptoms I have other than the fainting. He even said, 'I would guess you have other things going on'. Evidently it's not his responsibility to help me diagnose those other things and get back to health. My second appointment was with my PCP yesterday. He is wonderful and doing what he can to learn about this crazy syndrome. However, I've been off work more than the 12 weeks the FMLA protects. I can only seem to handle 1/2 days and then it seems I end up only able to do 4 days/week. We talked about how you diagnose CFS, how you treat it, etc. but I walked out of the office with no tests ordered, no referrals and orders to continue working 1/2 days for another 4 weeks. Just hoping that I bounce back. I am the primary breadwinner in our family. I have a pretty stressful job, although my employer has been great so far. My brain fog interferes with my work, not to mention having to get away to lay down during the day. I have long term disability benefits, but it would only pick up 60% of my wages. Thank you for allowing me to rant and get this off my chest. I'm just not making any progress and don't know what to do next! I was just diagnosed with NCS in December, but I've been fighting for my health since July. Any suggestions?

Thanks for your encouragement. From reading the posts on here, I see that my body reacts differently in many areas. Thank you for sharing your experiences.

What does help me get moving is protein!

I'm still new to all of this and trying to figure things out. I think I probably have CFS, in addition to NCS. When I drink even sips of coffee in the morning now, I immediately get weak. Used to be I'd have a cup or two every morning.

I just got a script for Mestinon today. Now that I've read this I'm not so sure I want to try it! Dr. Said to continue taking Midodrine. Hmmm, better break out some warm clothes!

I have always been a hard stick. However, the veins in my legs do get more pronounced throughout the day.

Thank you for sharing your experiences! My Dr. doesn't know if it will help with POTS. Even though I have bad reflux, my legs/veins aren't painful. I know I have some in the pelvic area as well, so doing just the legs may not be beneficial.

I have dealt with symptoms of Reynaud's for years, my Grandmother had it too. My body doesn't warm itself or hold heat. Thinsukate gloves are the worse because they are designed to retain body heat... But I have none in winter. I've always laughed and said I'm a chameleon, cold blooded. If it's hot I'm too hot, if it's cold, I'm too cold! I find that the electromagnetic field created by electric blankets makes me feel worse. So instead, I took about 4 ponds of rice and some silky material and made a microwavable rice pack. 3-4 minutes in the microwave, then put that on my feet and it really helps. With Reynauds, my feet and fingers turn white until I get achance to warm them in warm, not hot water, then they get beet red and hot. Luckily, I'm still able to take a hot bath which helps the most go get the chill off. When it's cold and I have to go out, I always warm the car in advance, I have a remote start now do I can warm it up before leaving work. I even use it to start the car while at the store. Getting into a warm car makes a huge difference! Good luck! Stay warm!

I had an evaluation of my varicose veins. I have a reflux of about 4 seconds. 1/2 second is a normal time. I'm considering having endovenous therapy to see if it will help me to feel better. Has anyone done this? Did it help you?

I'm also new to this. I've been off work for ~12 weeks. At the moment, I'm working 1/2 days trying to get back to work. However, I come home and crash for the rest of the day. I'm really worried that I won't be able to get back to it. I'm the breadwinner in the family. My husband is disabled due to a back injury. I do have long term disability, but at only 60% of my income, we'd be in a world of hurt.

I've been reading up on Low Dose Naltrexone. Could you Please share your experience with it?

Me too! I have tons of floaters! I can't say when the got worse. I even remember having floaters as a child.

Hi! I’m new to the forum. Thank you for all of the info you share. I have learned so much from all of you! I have been recently diagnosed with Neurocardiogenic Syncope NCS. I am hypothryroid, but have a normal TSH. I take compounded T3/T4. I’ve been taking nutritional supplements for years in an effort to find good health. I’ve been fighting what I thought was adrenal burnout for 20 years or so. My debilitating symptoms began suddenly on July 2nd, 2011. We had been out and about, had a great, active day. When I laid down on the bed and my son and husband bumped it, my head spun and I got nauseous. From then on, I was dealing with dizziness and nausea. The migraines began gradually from that point. Within 1-2 months, I was having migraines daily. The Doctor diagnosed Benign Positional Vertigo, gave me something for the dizziness and referred me to a Balance Clinic. I went to the Balance Clinic several times, did hearing testing and therapy that is supposed to help get the ears and brain back in sync. My headache and nausea got so bad that I couldn’t work. In desperation, I did an internet search for dizziness, nausea, and headache. This led me to a blog where I found a link to Vision Specialists of Michigan. I opened it and found a questionnaire to determine your tendency toward Vertical Heterophoria which I completed. A Dr. from VS of M called me within 2 hours. A normal score on the questionnaire is about 15, my score was 71. I had been feeling so sick with no answers that I had planned to go to Mayo and see if I could get in to see a Dr. for my migraines. Instead, we headed to Michigan and saw Dr. Debby. With her help and new glasses with prisms, I’ve been able to get most of my headaches under control! J It was Dr. Debby that suggested that the other symptoms I was having could possibly be Dysautonomia. She had another questionnaire with about 20 questions relating to Dysautonomia. I answered yes to most of them. Did you know it’s nearly impossible to get into a Dr. to get a diagnosis? Mayo Clinic and Dr. Grubb’s offices all require that you send them your medical records and results of TTT before they’ll put you on their waiting list. Bypassing my primary care physician, I located an EP Cardiologist that is in my Insurance Company’s Preferred Provider list. They told me he could see me and do a TTT if necessary. I was out cold at 31 minutes on my TTT. Dr. prescribed Midodrine for me and sent me on my way. Since I now have a diagnosis, (NCS), I went back to my PCP and he has been wonderful, learning what he can about Dysautonomia and working with me to find a solution to help ease my symptoms. We’ve added a beta blocker now to see if that will help, (I haven’t noticed much difference yet). What really seems to help is Gatorade. I’m trying to get back to work, currently working ½ days to try and build up my strength. Luckily, I have a sit-down job. I can go lay down when I need to. I can also go for a walk to get my blood pumping again. The worst symptoms are fatigue and brain fog. Sometimes I can barely hold my head up and I get to the point where I just can’t get a deep breath and get really nauseous. I also still have dizziness that gets progressively worse the longer I’m up. I think I’ve had this all of my life. I keep having “light bulb” moments when I read things on the forum and realize that I’ve done these things for years! I was really good at managing my symptoms until my stress level pushed me past my breaking point and caused this recent flare. My symptoms are mild compared to most of you, but they still interfere with normal life. I’ve been reading up on LDN to see if that might help.

I've been questioning the same thing. We just went yesterday to a vein clinic for an evaluation. The laser tx would help with the vericose veins, but my PCP said the blood pooling is likely caused by the deep veins. I haven't decided yet to have the procedure done. We scheduled for February. I'm curious to see if anyone else has tried this. The problem is, I'm certain that having the procedure would wear me out for the next few days.

Thank you for the article. I just had my tilt table test yesterday and was diagnosed with NCS. Dr gave me Midodrine. Have any of you experience side effects? I'm new to the forum, glad to have found you!