Ashelton80

My mother has it and my aunt started showing milder symptoms a few years ago.

Congrats!! I felt amazing pregnant!

I also visited Dr Kyprianu in Dallas for the two week program. During the two weeks there I didn't have any major symptom reduction. If I want to try really hard to find something, my digestion and bowel movements seemed a bit more normal. I've had IBS for years. I also thought about sex (sorry if TMI), but I never did before! Poor hubby! After coming home I only did the at home equipment for about a week. My grandma passed suddenly and we had a major move at the same time, so I quit practicing the biofeedback. Now that things have settled, I have been back doing the at home equipment for a week and ahalf almost every day. I do seem to be sleeping better. My attitude and approach right now is that it can't hurt and can probably be beneficial in general even if it doesn't increase my standing time. I use it as ONE of my tools to try and recover along with other things such as exercise, chiropractic, salt/fluids,maybe meds etc. It is a great stress reducer and we all know how stressful this illness can be. The mind is a very powerful thing, so for me anytime I can sit for an hour just focusing on breathing, relaxing and positive thoughts has to be great for the mind, body and spirit. Exercise when done consistently does more to improve my ability to do things like drive, go to restaurants, etc so I'm hoping the two together will grant me even more.

I actually had an episode like this today. No matter how many times I have them (and it's been a lot) they are still miserable and scary! It's even worse when you can't quite pin point the cause or trigger. Usually after it passes I can figure it out with some thinking and analyzing whats been going on. Today it was too little fluid while sitting on my deck in heat and humidity while talking on the phone eating a piece of pizza. Waaaayyy to many triggers at once and by the time I realized I was starting to feel woozy, the adrenaline is already pumping. It does get better. Hang in there!!

He took Fludrocortisone for 18 months. Not sure if he did anything else, but he has shared that much on his Facebook page.

Zoloft was a nightmare for me. It was prescribed before we knew i had Pots, but it made me feel like I could crawl out of my skin. I took it for 2 days and after 48 hrs I looked at my husband and told him I had never felt so mentally unstable in my life. It also made me aggressive and angry and have insomnia. I also remember the horrible dry mouth. From what I hear people say these types of side effects go away after several weeks, but there was no way I could have held on that long. I'm sorry that wasn't super helpful, but am curious why you tried an Ssri before florinef?

YES! Unfortunately, I started experiencing this lovely addition to symptoms about 6 weeks ago. I attribute mine to several back to back stressful events with my grandmas sudden passing as sort of the straw that broke the camels back. It started slowly falling out right after her funeral and then we moved from our home of 5 years into a new one and I feel like I've lost 1/3 of my already fine/thin hair. . I've had pots for years and this has never happened before. That's why I think it's the events. I don't think you are being vain at all! I think we have to deal with enough and I know for me this was not ok! A friend of mine with POTS recommended a supplement called Bio Sil. She said it took a few weeks, but it helped.

Why did your dr take you off of the medication? That's one reason I am hesitant with meds. It's seems the minute your getting relief they want to wean you off. If I start feeling great with say fludrocortisone and exercise then there is no way I'm gonna want to change things up if it's working!

I entered into my 3rd year of being sick. After about 8 months of getting better I got worse and it almost seemed like the bad days were harder since I had a taste of feeling better. I started to notice signs of mild depression. Well I started exercising and eating better again and felt like I was improving. Then my grandmother very suddenly and unexpectantly passed away after her shoulder surgery. We were very close and the events have lead me down a path of even more clinical depression. It's terrible! Should I be worried about starting Florinef since it can cause depression and I'm already depressed? Or maybe it would make me feel better and help me pull out of the depression? I'm so torn and don't have a good doctor.

I haven't flown since the on set of Pots for the reasons you are talking about. This did happen to me on a boating trip to the lake. I was fine until I ate lunch At the dock. As soon as I got back on the boat within 15 minutes I was in full fledged panic and that feeling of "need to get off this boat ASAP". Terrible feeling. I knew it was from eating though.

That's interesting jpjd59, I have had horrible reactions to deep tissue massage. I never really understood why? I don't think I have mast cell issues though, but one of my first symptoms of Pots were brought out by a lower leg massage at the nail salon and after a full body deep tissue. I would basically have what felt like a panic attack.

Hey guys, I seem to be going through a phase where I feel stuck with my treatments and recovery. I don't seem to have the motivation to try new things like I did for the first 2 years I was sick. At that point I was willing to do/try pretty much anything. At one point I was following a paleo diet, juicing, taking a wheatgrass shot and making a green smoothie and exercising every single day. I got about 70% improvement with that. It felt like a lot of work and I finally got tired of working so hard and still not feeling completely recovered. I have never tried Florinef and have the prescription sitting on my counter right now. I am terrified to take it because I am afraid it will stimulate my sympathetic nervous system and I avoid anything that I feel like might cause me panicky symptoms. I hate that the fear of having a bad reaction is greater than the fear of staying like I am now. I mean what if it's a great drug for me and I'm missing out? Any advice or encouragement is appreciated!! Thanks

I found cranial sacral massage to be helpful like other people mentioned for 2-3 days. I have found Atlas Orthogonal chiropractic to improve symptoms for about a week when I'm bad and 3-4 weeks when I'm doing better. Both relax the muscles at the base of my skull and neck which seem to bring my heart rates down fairly well. I definitely feel like I'm getting better oxygen flow to my brain with both techniques and probably combined would be the most effective. But $100 an hour for massage and $65 an adjustment needing them once a week can definitely add up!

Same here, 90/65 lying down and if I push it on my feet 135/90 or even a little higher.

Yes I gave up a while ago on it. I hadn't seen my doctor at Vanderbilt for almost 2 years and when I was relapsing this past winter all she wanted to do was repeat the same 2 (10 minute stand and qsart) tests that I have already done. I cancelled the appointment. I don't know what else to do or where else to go for that matter. I am basically self treating at this point with just lifestyle stuff. The main things that have helped me have been gluten/dairy/corn free diet and exercise. She never mentioned either of them and honestly down played exercise which has been the most beneficial. At least some of the docs like Suleman recognize there has to be multiple approaches to this condition. I think he uses what he calls a 5 prong approach (correct me if I'm wrong) with diet, exercise, drugs, salt and the biofeedback all together. I tend to lean more towards these types of doctors and unfortunately there aren't any close to me. But yes I refuse to spend my life running back and forth to testing and appoitments only to get more of the same.

Yep, I just got finished with my trainer and I was more out of breath climbing my stairs to come rest than during the entire 20-30 minute workout. My workouts are mostly on my back or on my hands and knees so it's not too bad. I can already tell it's getting easier. I've been back at the bike and work outs for 3 weeks now.

No I haven't. No one has ever even mentioned it to me. I have really crappy doctors though. My Vanderbilt doctor is a joke. I guess I've just always assumed that if something is wrong with the RAAS that no one would know what to do about it anyway. That seems to be what always happens. I remember mentioning to Dr. Cherdak that I wanted my kidneys checked because I have had issues with them since I was young and she basically blew me off and said it wasn't her area and I would just need to find a kidney specialist.

The difference between sodium chloride tabs and thermotabs is that thermotabs are buffered. Meaning they have a coating on the outside that keeps them from dissolving to quickly. They are definitely better for straight up swallowing as the whole purpose of them being buffered is to lower the nausea that often comes with salt tabs. When I try to used regular salt in my water I always end up with way too much and it does taste nasty. I don't know about you, but when I put 2 of the Na tabs in my water I can barely taste the salt. I've been salt loading for years so maybe I'm just used to it. My body also really needs it so maybe thats why it doesn't bother me as well. Who knows?!!

I have bluish/purple toes and feet and in my nail beds on my fingers. Is it constriction or lack of blood and oxygen to the extremities? I can never figure it out. That was one of my first visible symptoms. I will never forget looking down at my hands while walking around babies r us and my entire hand up to my wrist was completely purple. I freaked!

Does anyone else have what is referred to as Beau's lines on your finger or toe nails? I have several of them only on my big toe nail. They are deep ridges or indentations that run horizontal across the nail bed. I have 2-3 at different levels on one nail and 1 on the other. Of course it says it can be due to many things such as systemic illness, malnutrition or trauma. It's basically where the nail bed ceases to grow for an unknown period of time. The only thing I can come up with is lack of blood and oxygen to the bed for me unless I'm malnourished and don't know about it. I am under weight. Any ideas?

Wendy, I put them in a 16 oz bottle and it tastes slightly salty. I am so used to it that I barely even taste the salt. Every once in a while I'll ask my husband to taste it and he cringes because it's so salty to him. It actually tastes similar to your tears. The tabs (not thermotabs just sodium chloride) take about 10-15 minutes to dissolve completely in a bottle. I usually shake it often if I want it faster. Otherwise super simple and so much easer for me. I also like to know exactly how much I'm getting where as before with the liquids I had no clue and it was always inconsistent.

No, not really. I have more GI issues when I eat gluten or dairy, but once I cut that out I don't have any GI issues from the salt at all. I have no idea how I can handle so much. The tabs make me nauseous so I started putting a couple of 1 gram tabs in my water bottles several times a day and haven't had a problem. It makes my life so much easier versus doing all the chicken broth and tomato juice. yuck I need to keep better track of my heartrate and bp, but I can definitely tell a huge difference when I am salt loading really well. From what I can gather over the last few years, I am extremely hypovolemic. So much so that I believe it's the whole problem for me. Now why my body won't hold onto fluid or balance it on it's own I have no idea. All I know is I feel normal when I'm pregnant and almost normal when I soak in the ocean for days on end and gain 5 lbs of fluid.

Turn the fans on high as soon as you get in there and go at a very slow time during the day so they won't already be hot when you go in. I'm fine when I do this and like the above poster sometimes I feel very relaxed and calm in them. Just get up slowly when you are done and you should be fine.

Issie are you asking me if I did the program? If so, yes I spent the first two weeks of April in Dallas doing the accelerated program.

I have moved my intake up to 8 grams extra a day plus whatever I get in my food. So I figure around 10 grams. I have zero fluid retention from this much sodium. I can't believe I can take in that much and have none! So weird.