Ashelton80

All of the docs mentioned on this post I've heard nothing but great things about. In my opinion though, they are not all great. If you are planning a trip, do your research and think whether or not you'd want to go with the doctor(s) that can see you sooner than the ones mentioned here

FarmerAmy, I have definitely noticed that diurnal pattern with my symptoms as well. I also can one day keep myself in high coherence with ease and then the next day struggle a lot. I ususally do my breathing in the afternoon time around 2 pm, so I haven't tried it later on to see if I do better on my scores. I always thought this pattern must have something to do with cortisol, but my neurologist just said it had to do with renin/angiotenssin system having a hard time kicking in the morning and by the end of the day it was better. Who knows? I know another thing I've noticed is if I'm in a semi positive mood that day I score well, but if I'm feeling the least bit negative or having trouble concentrating on the positive things in my life I do really poorly. That's when you learn how your thought patterns affect your physiology.

Sounds like you are doing everything except for the relaxation CD's that she makes, but I'm sure you could find some online resources for that from someone else. The standing part I don't really understand because by the end of the two weeks I wasn't really doing any better (a little worse actually because of my period) so I was never trained on how to stand and do the breathing at the same time. Maybe just more practice?

The one thing in common from people who seem to talk about not doing well with exercise tend to be the ones trying to do upright things like walking, jogging, elliptical etc. I NEVER work out standing up. Everything is always on a recumbent bike or rower and as far as weights and strength training its the same. Flat on my back, planks, on all fours etc.

Yep, changes in weather/fronts definitely affect me too. I will get jittery and feel faint and within 5 minutes it will starting pouring down rain. Crazy!!!

I have the exact same experience as futurehope and Relax86. It can be rough for the first few weeks, but in the end it's worth it. Just have to make it over the "hump" in my case to get to the good days.

Amy, what has her treatment been thus far with you? I'll be honest, if in 6 months I don't have any improvements I probably won't be her patient anymore. She told me in 3 months I should feel significantly better, so that's what I'm giving her She is starting me on transdermal B vitamins and magnesium today. Have you had a Myers cocktail push before?

After my post complaining about an appointment, I thought I would share with you about a fairly good appointment I had a few days later. I had been referred to this doctor by a friend of mine and it took almost 3 months to get in with her. I had made the appointment back in November. It was a long wait as well (almost and hour and a half) in a very hot, stuffy office also under flourescent lighting! I was on day 3 of my menstrual cycle so I really thought I was not going to make it. LOL Once she sat down with me, she spent 3 hours with me! Went over my entire history and the last 4 years of blood work I've had done through my general practitioner. She is a nurse practitioner who at one time practiced the traditional medical model. She got very sick and was bedridden for a year with Chrohn's, PCOS, Hashimotos thyroiditis and several other issues. That is when she turned to functional medicine which made her well and is now doing great. She is super nice and compassionate and told me that she thought she could help me, but if for some reason she couldn't she would get me to other people who could. That was refreshing! She immediately noticed a few things in my blood work like antibodies to my thyroid which aren't too bad right now, but she said that autoimmune is now on board and will eventually need addressing. I am mineral deficient and my copper/zinc ratio is off. She also thing I have severe leaky gut and that's why I cannot process any supplements and have so many food reactions. Everything that I will be doing at first will be transdermal or IV/shot. We are doing stool, urine and saliva testing for several things. I know she is checking the bacteria and yeast in my intestinal tract and to see if I have the correct enzymes to break down protein, fats, etc. I will go back next week for a new vitamin/mineral since my other one was a year old and also a Myers cocktail. I am a little nervous about that one. She has also called me in transdermal b vitamins and magnesium, but we will have to wait for all the other test results to come in and that can take up to 4 weeks. She did mention that she may put me on Fludrocortisone like my other dr suggested, but it would be at a teeny tiny dose and broken into 2 doses (1 morning and 1 afternoon) instead of all at once. I am cautiously optimistic to have someone I feel is on my team and really cares about me getting well. I really hope she can help me. She was happy I am already doing some really good lifestyle habits such as gluten/dairy free, exercising, going to sleep around 9:30 every night (this has helped soooooo much) and practicing the biofeedback that I learned from my 2 week stay in TX. Only time will tell, but wanted to share.

YES YES YES, gluten withdrawel is VERY real and it is not fun! I have been through it twice. The very first time I went gluten free about 2 years ago I had increased symptoms for about 10 days and then it was like someone lifted the fog and everything improved. This past summer I decided to go off the "diet" and ate whatever I wanted for about 6 weeks to just make sure I felt I was still doing to the right thing for my body. Plus it does take some extra effort and discipline to have many food restrictions and I'm underweight, so I thought I would see if I could gain a few pounds. Well, I did ok eating whatever I wanted which included pizza, burgers with the bun, milkshakes, etc. at first, but about 3 weeks into it I could tell things were starting to get worse. My symptoms mainly nervousness, jittery, diarrhea, brain fog and tachycardia all continued to worsen. I decided that I needed to go back to the gluten free diet I had been on. This time the withdrawel symptoms seemed to be more acute and harder to handle, BUT they only lasted this time for 4 days and then it was the same fog lifting and my body just seemed to calm and relax. That is my experience for what it's worth:)

I can only speak for Dr. Cherdak's bedside manner, not the other doctors within the autonomic clinic. If I had traveled a long way to see her I would have been devastated, but since I live in town and have another appointment with a different doctor on Tuesday, it was bearable. BUT I will never grace her doorstep ever again. Hopsmom are you saying you had a good experience with Cherdak? or Vanderbilt in general?

When I was pregnant and anemic I did this.

I know people think Vandy is great and all, but I live in Nashville and with POTS this has just not been my experience. I had an appointment with Dr. Cherdak in the autonomic clinic today, and it was not a good experience. Today my appointment was at 10 am so I arrived at 9:45. Called me back at 12:30! I waited almost 2 hours in a waiting room in an uncomfortable chair under flourescent lighting. The appointment with the doctor was not a good use of my time and energy.

Adrenaline is the antagonist of Histamine. I read that one time and it was an "a HA" moment for me.

Pork sets me off every time. I can handle a little bit, but not a lot. I had an episode today at lunch that I'm still trying to figure out. I get really hot in my head and back of my neck. I feel feverish and then I get very anxious and my heart rate will elevate. A lot of time I will have diarrhea, but today was a mild one. I always check my temp when I feel this way and I never have fever. I looked at my husband today and said "I wonder if this is what they mean when they ask if I flush" and he said it sounds like it. Interesting about the antibiotic, I took one last week and seemed to handle it fine. It was the sulfa drug Bactrim for a UTI. After I see my neurologist at Vanderbilt, I am really going to give Histame and some H1 and H2 blockers a try!

There is a supplement called Histame. It supposedly replace an enzyme that some people are deficient in that causes them to not be able to break down histamine properly. I've read really good reviews on the product and I actually have some that I am planning on trying after my 2 doctors appts tomorrow and next Tuesday. You have to order it online though.

I just had some re-testing done today and my bp at 5 minutes on the tilt was 150/98 and it bounced around but stayed high throughout the 10 minutes. My heartrate was 130. The weird thing is I felt fine during and after the test. The first tilt I had my bp stayed normal ish 120/80 and my heartrate went to 155 and I felt dreadful during and after. Makes me wonder if the high bp makes it easier for me to function symptom wise.

My husband told me once there are over 100 techniques in chiropractic. The main one is called diversified which is what everyone refers to as "cracking". He hates that term because it is so misleading as well. Atlas Orthogonal is a very precise adjustment using an instrument about the size of an ink pen. It only adjusts the atlas vertebrae or C1. The atlas surrounds the brain stem and all the nerves. There is no neck rotation and no "noise". I basically don't even feel it. It is amazing that it actually works because I literally don't feel a thing. But when I get warmth and tingling in that area, my whole body just basically takes a big sigh of relief. Usually several hours later I can feel the results even better. My muscles stop spasming and my head feels so much lighter if that makes sense. Good luck with your appointment. I need to make one for myself, it's been too long and I'm feeling it!

I'm married to a chiropractor. It's so funny how much misconception/ignorance there is with people about them. They are not "less than" MD's, they aren't anything like MD's. It's like comparing a plumber to a car mechanic. Their philosophy about the human body is completely different. I have used Atlas Orthogonal chiropractic (which my husband doesn't do) with much success in relieving symptoms of POTS. It's not a cure, but it helps tremendously. One other observation, usually when people disappear from here, it means they are doing better. I know I don't spend any time on here when I have a choice to do something else!!

I had this done a few years ago. Bascially, they just attach little electrodes filled with acetylcholine to your foot, calf and arm. They then run tiny currants that feel a little tingly and it measures your response and how much you sweat. I guess that shows whether or not you have neuropathy. I had mild neuropathy in my foot, but the tech had trouble getting that one attached correctly so I have my doubts with how accurate that reading was. I am having a second Qsart done at Vanderbilt next week. It's a tad annoying, but nothing painful or invasive. Honestly, I don't think it was very helpful in any type of treatment plan. My doctor just did the prescribe Florinef see you in 6 months. I'm going to push to get her to do more and actually have reasoning behind it this next time I see her.

Thanks guys! Well I've already had a set back. Not due to the exercise, but I have a Urinary Tract Infection. UGHHHHH I've had it for almost 2 weeks now, but the symptoms would come and go. Well today it was bad and I decided to go in and let them check and sure enough I have bacteria and blood in my urine. That explains the horrible pain. So it wasn't mast cell after all. Really trying hard not to let this get me down today and hopefully be able to start up the exercise after a day or two of antibiotics. So frustrating!!!!

Hey guys, just wanted to let you know that yesterday I re-started Dr. Levine's exercise protocol. I can't really say re-starting as the first go around I sort of took his recommendations and did my own thing. That probably got me to a 70% recovery at the time. I do have an appointment with my autonomic dr at Vanderbilt on the 17th and an Integrated Functional MD on the 22nd. I am also in the process of getting an appointment with Dr. Afrin, but it has taken over a month and I still don't have anything scheduled. I know for me personally, I am just tired of sitting around waiting on Dr's appointments. I have waited over 2 months for the Integrated MD appointment already. So, I thought while I was waiting that I could at least have something in the works that I know will at least help in the mean time. I am also going to try very hard to do the exercise exactly the way he has it outlined in the protocol. I have been in contact with a couple of other girls that had complete resolution of symptoms with the exercise protocol. They are both back to work full time and still work out 5 days a week. No meds, no major salt/fluid loading, just normal amounts. I DREAM of that. Wish me luck, yesterday was Day 1 and I made it on my 50 minutes bike ride without issue. I will say that I have worked out on and off for over a year, so that's probably why it wasn't too terrible. I do feel a little worse today, but I know after a few weeks I should start to see improvement. At least thats how it was the last time. I'll keep everyone updated. Happy New Year!

Same experience as FarmerAmy, was getting sick constantly. I eat no processed foods gluten, soy, corn free. I eat mainly meat, veggies, brown rice, quinoa and some fruit. I take a high dose of Vitamin D every day and it has made all the difference. It haven't been sick at all this year with anything other than POTS. I survived the stomach virus, a cold and the flu from my 5 year old over the last 8 months without even a sniffle. I stay very far far away from antibiotics as they can destroy your bacteria in your gut and leave you with an even weaker immune system.

There is a girl on youtube who documented her stay at a research facility for POTS that I am assuming is Vanderbilt. I live in Nashville, but have not participated due to the length of time usually involved. Do you know how long you will be there and what the study is? If you have been diagnosed with MCAS have you been able to manage some symptoms with the protocol for that?

I am struggling right now with a pelvic/urinary tract pain. It was triggered almost 2 weeks ago by eating a ton of italian sausage. It will seem to go away for a few days or lessen and then out of no where it is a 9 on a 1-10 pain scale usually when I wake in the morning. This morning I literally couldn't breath I was in so much pain. Luckily my husband is a chiropractor and will adjust my pelvis and a couple of places in my lumbar that will ease the pain. I have noticed that my back muscles will spasm along with the urinary/pelvic pain and then it just escalates. After he adjusted me this morning he had to massage and dig on the trigger points in my low back before the pain subsided and I could get comfortable enough to fall back asleep. Today it has just been a dull ache, but nothing like earlier. I am guessing this is Intersticial Cystitis and I believe can also be related to Mast Cells. It's no fun peeing fire! Is that similar to what you are experiencing?

The chest pain and the shortness of breath were two of my symptoms that Levine's exercise and salt/fluids improved almost 95 %. Mine is in the same spot and radiates around to my back, so I just tell myself it's muscle/nerve pain and not angina. My ECHO was perfectly normal as have all my EKG's and I'm young so I have no reason to believe I am at risk, but I do agree it is a very scary symptom!! Now that I haven't exercised regulary in several months the SOB and chest pain are both back. I'm planning on starting back his program again. The reason I am doing his is that when I try to just exercise at my own pace I just don't seem to get the same results as I did when I was doing it the way he outlines. Maybe Im not pushing myself hard enough? Either way, as long as you've been checked out and ok'd it's just something that has to be pushed through.