sue1234

I had mentioned earlier a CT or MRI. I was thinking that it might be worth the effort so your doctor can look for a pheochromoctyoma, a tumor on the adrenal gland. Your b/p doesn't jump really high, but it doesn't necessarily have to. But your headaches are a sign, and it is known that compressing pheos will release catecholamines. Sitting and bending at the waist level will compress a pheo. And, of course, a release of catecholamines will trigger anxiety/panicky feelings.

I don't know--being that it happens so suddenly when sitting, have they done an MRI or CT scan to see if there is something physical that could be causing your short of breath problem? It sounds like when you sit, your body is crying out that something is not getting oxygen or blood flow, or something important! With a slight fever, have you had your thyroid levels checked to see if you might have hyperthyroid?

Are you having any after-effects from the vaccination, as far as normal side effects?

When you mention "leaky veins", that makes me think of "third spacing", where, for instance, burn victims will have so much fluid shift from their vascular system to tissues(skin), that they are at severely at risk of dehydration. Like i said in my earlier post, fluid follows albumin(protein). So, why in POTS might this be happening? I know when I get hot, my hands start swelling like blown-up medical gloves! Never happened before POTS, but it obviously looks like fluid just "loose" under the skin. And then when I cool down, they unswell as fast. So, how do we keep the fluid in the vascular system?

((((hug))))! I totally relate. Initially when I would mention to my parents that I was going to a doctor's appt. to try and figure out why I couldn't stand w/o being lightheaded, they would just abruptly change the subject. It almost felt like a slap in the face. Now, I don't talk about my problem, and on the rare occasion that I mention I have a doctor's appt., I STILL get the same reaction. They have never in my 4 years of POTS asked if a doctor found anything, or if I'm feeling any better, etc. They just kind of ignore it. In fact, I occasionally travel out of state for a doctor's appt., and sometimes they know and sometimes they don't. They still never ask how it went. My mother-in-law, on the other hand, asks me all the time how I am doing, and wants to hear how my dr. appts. went. I have to give her credit for always being supportive. It is very frustrating to know that parents, of ALL people, would not be behind us. I could not imagine "abandoning" my children emotionally when they would probably need it the most. I think my parents think if they can't see it, it doesn't exist. I remember I had post-partum depression after my first child, and my dad made a comment one day to "just get over it!". If it would have just been so easy.

Yea, I know that it definitely wouldn't be the answer to everybody's reason why they might have dys. I realize some have EDS as their causative factor. I don't have EDS, although I've never been tested. I just assume so, as I have NEVER been limber my whole life. When other kids could do cart wheels, back bends, etc., I couldn't, as my joints are so NOT limber. And, not everyone with a HH has POTS. But, it could be a factor for some POTS people. I will definitely bring this up at my next gi appt. I went to the gi wanting to be tested for celiac(will find out Dec. 1 at appt.), and now am still thinking that my bloating that I tell every doctor makes me short of breath, might actually be my herniated stomach pushing on my lungs. That tiny opening was only made so big to allow the few things through. So, I am picturing my stomach compressing on essential structures. It would kind of make sense, as I was just diagnosed with diastolic dysfunction(one of those many catch-all terms when they can't explain something!), and I could see the compression underneath the heart area not allowing a relaxation of the vessels leading into/out of the heart. I can ACTUALLY visualize this happening!

One thought is has he had his cortisol level checked first thing in the morning? It's a far-fetched idea, but vomiting, diarrhea, and abdominal pain occur with Addison's. Now, if it just started two days ago, of course it is most likely a virus, but if it is chronic, it should be checked into. Also, with chronic acid reflux, have you had his calcium levels checked? If elevated, check parathyroid hormone. These are just some not-so-obvious reasons. I assume you have had the obvious reasons looked at.

Thanks, Maisie, for posting. I hope we have alot of discussion on this. I THINK I am now able to post a link to that drawing: http://www.nature.com/gimo/contents/pt1/fi.../gimo48_F1.html Yay! It worked. It will show all of the anatomical structures that do through the diaphragm from the abdomen into the chest area. I have issues(faster HR, incr. b/p, and SOB) with standing AND sitting very upright. I feel best in a slightly reclining position.

I have and do go over every possible thing that could contribute to POTS. I guess I figure that if I don't think it through, no doctor is EVER going to devote the time I do to it! Anyway, I have asked a doctor before if it could be a mechanical issues--that is, related to a physical problem. He said that was an interesting theory(and he's a POTS specialist!), and as usual, I forgot about it for a few months. Now that I am back visiting my gi doctor and going over my gi issues, I know I have a hiatal hernia(10 years). But when I read what symptoms HH people have, it is similar to me, such as getting SOB with walking and with lying flat. Anyway(again), when you look at the anatomy of the stomach and a hiatal hernia, it can protrude up through the diaphragm exactly where the vagus nerve AND the aorta go! I can imagine the sliding hernia stimulating the vagus nerve. AND, I can imagine the hernia pressing on the aorta, causing the blood in the body "pooling" and having a hard time getting back up into the chest. I guess what I am saying, is the body's blood flow would be "blocked". And think to how alot of us complain after a largish meal, we feel abdominal pooling and more POTSY. It's possible the full, herniated stomach is just blocking more of the blood flow, and of course, stimulating the vagus nerve. I found a drawing of the structures that go through a hernia, but my limited computer abilities won't let me paste the drawing that I had found and copied. Sorry. Can we discuss this? People with hiatal hernias chime in?

That makes sense to me, personally! I've had POTS for almost 4 years now, and almost 2 years ago I had my thyroid removed. Of course I had fluids for about 24 hours while in the hospital. I felt the best I've ever felt since POTS began! I walked the halls without lightheadedness and my mind was SO clear! I remember walking outside of our hotel the next day and making myself sit down because I should have been lightheaded at that point, but I wasn't. Since then, I have told each new doctor that I think I have low blood volume and tell them how well I felt with IV fluids. You'd think they would try and delve a little deeper into that, but NO. I just want a doctor to measure my blood volume and be done with it!!!!! Then we could either fix it or move on to something else.

Yep, I grew up around the world as my dad was in the Air Force. Our family jokes that we grew up with so many vaccinations against things never seen in the U.S., that that's why we never get sick! Of course, I'm the lucky one to get POTS--I would rather get my average number of colds per year instead!

Now I opened the article and looked at it. I had brought this article about 1 year ago to a cardiologist, and explained to him that the one aldosterone level I had was actually LOWER than the POTS patients in the article! All he did was rerun the labs, this one came back in range, and wanted me to start some standard meds(beta blocker, anti-depressant). I didn't go back to him. I did bring up with him that I had been wondering about a pheo, as I have had some small adenoma on my right adrenal gland. I had read that in the article, a pheo could explain the lowered blood volume. I believe, so far, my albumin levels have been normal for me.

In my first thought, I know albumin has to do with protein. And I remember from college physiology(IF my memory serves me right!) that fluid follows protein. So, I assume that means if intravascular protein levels are lowish, maybe the fluid levels would follow? Like I said, my cognitive abilities have really dropped!!

Amy, I totally understand the skepticism. I've forked out enough money from my own pocket looking for "alternative" cures that didn't work. The only reason I personally believe in the whole foods eating plan for Crohn's is that we are farmers that farm sustainably, and one of our meat customers started buying meat from us, as her son-in-law had been diagnosed with Crohns. He was a strapping, college football player that had to take time off because of his health going down hill. She had researched and read about "whole" foods diet plans that don't irritate the colon. He started eating the "whole" foods, and a year later, she said he was well and back playing football.

This is exactly why I quit driving. I've always told my husband it feels like I am drunk. When I try to drive, it's like I have to keep trying to refocus on the road, and then the faster I go, it gets overwhelming to the eyes to watch the road and see all the periphery flying by at 55 MPH. So, I quit driving. I call it having "bouncy eyes".

Alicia--yes, that is what Jordan Rubin had. I read his book, "The Maker's Diet" about 5-6 years ago, and he had Crohn's for years. Then he changed his diet and healed. He ate all the living foods and no processed foods. It was amazing his pictures from before and after. Mrs. Burschman--there is hope, possibly, and it's through diet. Did any doctors talk about what to eat or avoid?

Wow, Julie, that sounds great for your son! I bet he was enjoying the new-found ability to do more. Yes, we are all waiting with baited breath for Rama... to post more. I think he has been sleeping during our waking hours.

Is there anyway you could give us full access to the article? All I can get is the short synopsis. It sure might sound relevant in my case. Isn't mycoplasma infections related to fungus?? My issues started after Hurricane Rita(the bigger hurricance that happened one month after Katrina), and I swear the winds were so strong and driving, that we had a small amount of moisture come in UNDER our walls between the walls and the concrete. In fact some peoples homes were ever so slightly repositioned on top of their concrete! Anyway, I could have been exposed to fungus in my house. If mycoplasma is the case, then it sounds like some strong anti-fungals would be in the treatment picture. Am I wrong? Would love to read the article!

As far as gastritis, I have been diagnosed with acute and chronic gastritis. Not sure how or why it is, as I am not a drinker. And don't know how much that influences the bloating. As far as probiotics/yogurt, I don't know how it makes me bloat, but big time bloating it causes! I'm wondering if the bacteria just set up shop higher up in the gi tract where they are not supposed to be. I was reading alot of HH posts yesterday, and alot of the people talked about how they got short of breath, and alot while walking, because the hernia would "shift" up against the lungs with walking, exercise, bending, etc. That soooo explains me. I can't wear anything that even remotely binds the waist, and walking makes me feel like I have breathed air into my stomach, because when I sit, I start doing that moving around to get the burps up! And, lying flat in bed has become a bad position for me, as I immediately feel like I cannot get any air in. I have told my gi doctor it feels like my stomach is pushing up on my lungs--what a coincidence that that might actually be happening. I have, for many years, had the head of my bed propped up, but not for acid reflux, just because I could breath better. Odd.

Cat Lady--so you came back positive? I'm still waiting on my results. Let me know how your bloating goes off gluten. You can't imagine the contorted positions I stretch into just to see if I can get a burp up! I am the same, I have to get up and pace just to get things moving so the gas bubble will move up and out in a burp.

Someone had suggested this(hiatal hernia) on my last post of abdominal bloating. I started reading about HH, as I was told I had a small HH. Now I am not so sure it is small. I read an interesting article about it, however, it is not a medical journal article. It is from a chiropractor's point of view. It had some very relevant symptoms for me. Read the symptoms part at the beginning and at the end of the article. http://www.joyfullivingservices.com/hiatalhernia.html Especially, note that a hernia can put pressure on the vagus nerve and in the long run, influence heart rate, b/p, and other bodily functions. It kind of makes sense.

Wow, lots of good stories and advice! I DO have a hiatal hernia, by the way, and maybe it has gotten worse. I often wondered if my stomach was pushing into my chest! I'm dead serious, it could have reached that point. I have a gi appt. next week, I'm going to ask to double check on my hernia. Yogurt and probiotics have always made it MUCH worse, so don't get past day one on them. I take the generic for Reglan, but it seems like it's not working anymore. It used to help. Any suggestions on what might work, medicine-wise? And Todd, I am exactly the same. The longer I am up, the more my stomach grows. Then I sit, and then I have to burp air out--I could almost swear I am breathing air into my stomach! I do use the gas-x, but doesn't seem to be working. I really do agree with the trapped gas, but why in the heck does it have to migrate so high in my abdominal cavity? I feel like a pressure valve would work wonders!

I have severe upper abd. bloating, and don't really know if it is POTS related. I had it before POTS, but it has gotten worse since the onset of POTS. It feels like my stomach literally pushes up on my lungs, and keeps me from breathing well. I can get cycles of this, sometimes going on for weeks, then a week or two respite, before it starts all over again. It is really becoming my worst symptom. I can sit in my recliner all day, but I can't take having trouble breathing. By the way, I am still waiting on my celiac testing, so it may be from that.

I get UTI symptoms on B vitamins, also! What's the deal???

The last doctor I tried wanted me to try Remeron. Last week I took 1/2 a pill, and was dizzy for the next few days, and my eyeballs were dizzy on their own, too! So, I didn't take anymore. I hate reacting to everything.