Birdlady

I couldn't vote in this because the options really didn't include anything I felt was accurate for me. 1) I don't count calories at all, but I pick foods that are healthy. 2) I've never been to a nutritionist. I probably know more than they do... 3) There wasn't a "No" option here. Everything implied yes. Before I was treated for adrenal insufficiency, I was underweight. Now that I'm treated, I think I'm about right for my age/height.

SAMe is a natural supplement some of you may want to look into. It has been shown to lower standing norepinephrine levels in studies. http://www.ncbi.nlm.nih.gov/pubmed/3961029 I think it really helps me even though I'm not hyperadrenergic.

As you can see in my signature I've given up a lot of foods and it has helped with unrelated issues (unexplained rashes, itchiness, hives on my face). I know when a person goes gluten free, it takes a lot of discipline for it to work. Sometimes I just want to order a pizza sooo bad! lol Although I don't have it listed, I avoid dairy at all cost too but I still use butter as it doesn't seem to bother me like a glass of milk. I don't like any of the butter alternatives out there. Hershey's syrup is nothing more than high fructose corn syrup. There is no nutritional/electrolytes in it, so you are better off just drinking the milk plain. Just my 2 cents =)

I'm sorry I didn't really mean for that whole post to be directed at you!!! Just venting!!!

The problem I have with this deconditioned theory is how many of us have gone undiagnosed for 5+ years or even 10+ years. After 10 years of being exercise intolerant, of course we are deconditioned. It comes down to what came first? For me, it was definitely the POTS. My first run in with the heat/exercise intolerance was when I was going into my Junior year of high school. I had to suffer through band camp in 90 degree heat and thought I was going to die. No one else (that I could see) was suffering like me and I knew that obviously something was wrong. How is only one 16 year old out of a large marching band of 300 deconditioned? I certainly was not fat and there were many overweight people in this band that likely were more deconditioned than me and they were fine. I was quite active before this, riding my mountain bike any chance I could get, doing Tae Bo etc. Fast forward 10 years of suffering needlessly and yes my body is a little bit more flabby than it used to be but I am still a good weight. If CC tries to tell me that deconditioning is the cause of my POTS, I'm probably going to scream at the doctor.

Before I got POTS, I was also fairly active. I wasn't much of a runner though, but I did a lot of bike riding! If there's a type of POTS caused by deconditioning, then I don't have that type because I think I was fairly fit. Of course looking at me now I probably am deconditioned because I feel so awful when I start to exercise. My heart rate shoots up immediately (160+) and once I get overheated, I have to quit or I'll collapse. I still go for walks though as often as the weather allows me. Part of me thinks that OVERexcercising is why I'm here. I don't think any doctors are talking about that possibility though. From what I've read on this board a lot of us were working graveyard shifts and/or burning the candle at both ends before we came down with an illness/virus and then ultimately got POTS afterward. I think that's what needs researched rather than the deconditioned theory.

From my own experience it takes a few days for the symptoms to come back full force. The really weird thing about it is I feel like the symptoms are even more severe than before taking the beta blocker too.

A few days ago my husband told me that he's noticed in the past that my breathing is way way too fast while I sleep. He said he tried to mimic the amount of breaths I was taking and he began to get lightheaded. Last night I told him if he woke up at all to listen to me breathe and to check my heart rate. Once again, I was breathing really fast, but my heart rate was slow/normal. Does anyone else have sleep disorders? I have no recollection that this is occurring and I'm not waking up in a panic or anything like that. He said that over 10 minutes the rate of breathing did not change. It was consistently fast. I've never had a sleep study done, but this has me thinking perhaps I should go down that route. Google hasn't been too helpful, so if someone has any links to a site that talks about this I'd appreciate it. Thanks everyone

Wow my heart goes out to those of you who are dealing with not only unsupportive family members, but downright abusive family members! No one should be treated like that sick or not sick! ((HUGS)) My family even though they aren't always supportive, are not abusive. Sometimes they just don't get it and expect me to do things that I can't do, but I know that this is a really hard "illness" to understand and they aren't purposely trying to hurt me. I think it helps that I don't really talk them about my problems though. If I called them every day to tell them how terrible I felt, they'd likely get sick of me REALLY fast. I wouldn't blame them!! I don't really have any friends to talk to about these problems though. No one wants to hear me complain every single day! I think that's why groups like dinet are growing so much. It's great to be able to instantly 24/7 get some support even if it's from total strangers. We all know what each other are going through to some degree. No one should ever feel isolated!

I am probably not hypertensive enough to be in the true hyperadrenergic category. All I know is that supplements and meds that are used to lower/block norepinephrine tend to help me. It calms my anxiety and heart rates significantly. I'm having another TTT done at Cleveland Clinic in the beginning of June, so we get to see what this new one shows. I think FINALLY I will have my catecholamine levels tested too.

Here's what I experienced! For 8 months I suffered from random, unexplained itchiness on the back of my legs near my butt. During an "attack" though if I scratched my skin at all, a new hive would form there. It would spread all over my body. None of my doctors had any idea, so I just went on suffering with it for a long time. Fast forward a few months. The attacks weren't as frequent, but still quite frustrating when they'd come on. I decided I'd try eliminating certain foods from my diet that came back positive on a IgG test. Since I've cut out the foods with the highest reactions, I haven't had a single "attack" since (UNLESS I goof up and accidentally eat one of the foods). No hives or unexplained itchiness. I haven't had to take a zyrtec for about 8 months which is simply amazing considering I HAD to take it every day or I'd be miserable. This is something to think about!

The heat is absolutely debilitating for me, but my BP tends to be lowish. During my tilt test though it did not drop until after they gave me nitro. I still don't know exactly which "type" of POTS I have!

I believe shingles can cause both a rash and chest pain if it's affecting those nerves.

I raised my bed for a few weeks and didn't notice any difference in symptoms. It made sleeping extremely uncomfortable for me though. I'd wake up and find myself scooting further down the bed! haha I dunno if it was because I was sliding down or if my body just naturally wanted to get lower to feel more comfortable. After a while I just told my husband to take the raisers out so I could finally get a good night of sleep. I think it's worth trying though because some people find it really helpful!

Thanks! I was hoping you'd poke in here ...So let me know if I am understanding this right. Basically from what I read in the link and from what you have said, they are trying to medically induce a syncope? I'm not exactly sure what that tells a physician if you do faint after the use of these drugs...What does it tell a physician if you don't faint?

I can't answer your questions because I've wondered this myself... My local hospital did a TTT and used nitroglycerin which made my blood pressure dip into the high 90's and my heart rate nearly hit 180. Next month I plan on heading to Cleveland Clinic for more diagnostic testing and I was told that any TTT done with either nitro or Isopro are invalid and they must be redone. So...that is something to think about! I don't understand why one hospital/doctor use those drugs on everyone and then another hospital says they are completely useless... Perhaps someone else can help clear this up for us both.

This is why you should always get copies of your lab work! I don't know how many times I've caught things completely abnormal and was told by a nurse everything was "fine" or "good so far". Lab ranges are supposed to be a subsection of the population. The problem with this is that sick people (not healthy people) are getting these labs done! Because of this, these lab ranges are getting larger and larger in either direction including more and more sick people.

One thing you can do is a saliva cortisol test that has you collect at 4 different times during the day. That will give you enough info on whether or not you need to proceed further with an ACTH Stim test or other cortisol testing via blood. Most endos won't "accept" the results of these saliva tests though so be forewarned. It always amazes me that they trust saliva results when it comes to Cushing's Diease (high cortisol), but they don't trust them for Adrenal insufficiency. Good luck! Even though HC has helped me with the fatigue and burn outs I used to get, my POTS is still as bad as ever.

Yes!! I told my chiropractor that I cannot sit like a normal human being with my legs down. They have to be curled up next to me or with my knees to my chest...I never really thought it was a potsie thing. I just told him I had terrible posture!

The abnormal TTT was not done at Cleveland Clinic and when I talked to the secretary on the phone she said that mine was invalid because nitroglycerin was used during a portion of the test. Gotta love it when one doctor's office tells you something you did was useless! I thought that they'd want to see me without the BB to get a real baseline. The beta blockers helped tremendously in the winter, but now that it's hot outside, I'm back to square one--rapid heart rate, shortness of breath upon standing etc All that fun potsy stuff. Maybe it doesn't matter if I stay on the BB's for this test since I am symptomatic at the moment? I dunno! My biggest fear is if I stay on the BB's I'll have one of those rare better days and they'll just send me home and say everything is good. I didn't have a chance to call them today, so it's on my To-do list tomorrow. I think I need some more answers. I'm thinking about sending my labs/TTT results early so they have everything sooner rather than later.

The only reason I made an appointment with them was because I thought they were supposed to be good doctors? haha I had even done a search on this forum and most of the posts I found were all very positive. Maybe things have changed? I really see no need to do another TTT, but I guess I have no choice at this rate. I don't do that bad during the tilt as long as I stress dose my hydrocortisone, but it's just uncomfortable. Maybe it's time to go back to the drawing board and force my local doctor to test the catecholamines supine and upright. That's really all I care about. Even though he's a "POTS expert" he is really out of it when it comes to testing. I also have salt-wasting, so that part of your post really interests me. I also have a diabetes insipidus diagnosis, but have found that I go through cycles where I don't need the meds. We have a lot in common I guess. Have you ever been tested for adrenal problems? Low aldosterone usually causes salt wasting, which is remedied with florinef. My aldosterone levels are pathetic, yet florinef gives me massive migraines. I can't win! Thank you for your post. It makes me wonder if this is even worth the hassle! Thankfully I only live about 2 hours from Cleveland.

Sophia I completely hear what you are saying! Yes this is for diagnostic purposes and not a follow up for how I'm doing. I told the office that I wanted more comprehensive testing to determine the exact type of POTS I have. Honestly I don't even know why they want to do another TTT. Mine is pretty conclusive as you can see in this thread I made a few weeks ago. They used nitro at the end of my TTT and the receptionist was saying that it was worthless and that I'd need another one, but I tried to explain to her that I had already tested positive for POTS even before the nitro was administered. All of this just doesn't seem right to me and I'm actually really put off by it now. Money is tight right now, so even the mere thought that this could all be for nothing is not sitting well with me. I was so caught off guard by the receptionist's answer that I didn't even ask why they wanted to test me on them in the first place! haha I think I'm going to be calling back tomorrow to ask more questions. My local doctor has been out for a few weeks, but I may even put in a call to him to see what he thinks about this. Even IF BB's only affect the effects of catecholamines (rather than the output which makes sense and I don't know why I didn't think about that beforehand LOL) then this TTT will likely be a waste of my time/money and physical and emotional energy. Maybe I will still fail the test though? I really have no idea what my body will decide to do. Some days I feel great and others I feel terrible... With adrenal insufficiency, I also have the risk of slipping into crisis with these tests and I have to stress dose. They don't even know I have this as no one asked about my medical history or current meds. Thank you everyone for the input. Now I have to decide where to go from here.

I was told when I was 17 that MVP was the cause for all of my issues (rapid heart rate, lightheadedness, fatigue etc). Fast forward 8 years and I don't even have it now! I really think MVP is blamed for A LOT symptoms it does not cause.

I'm not really sure why they want me on the meds. I should probably call back and ask. I am a new patient, so I thought they'd want to see me with a clean slate. She told me on the phone not to drink coffee because they will be testing catecholamine levels. Uh, I know that beta blockers affect those levels, so I just don't understand at all.

I am scheduled to go to the Cleveland Clinic in the beginning of June for more diagnostic testing. I've already had a TTT done with confirmed POTS, but I want to get some more comprehensive testing done. I got the packet in the mail and was confused about whether or not I needed to be on beta blockers. I currently take 25mg of Metoprolol ER. Well I called today to verify what needed to be done and I was told that I need to stay on the beta blockers for the test. Does this sound right? I asked if this would affect any of the testing and I was told no. That makes zero sense because the beta blockers have been extremely helpful for me, so I'm less symptomatic. Obviously it is going to affect the results of the tilt test and catecholamine tests, right? Am I missing something? Is this normal? Thank you.