dianaD

Hi, My lab does tests without an order (but if you want it without a doc's order, you have to pay for it). I believe it is "Quest". You have to go to their offices, I think. They advertise it and encourage people to have "thyroid panels" and "heart-healthy" tests, etc. They are a trusted, reputable lab and I see nothing wrong with requesting your own blood work whenever you think you need it. You can always see your doc if something turns up abnormal. I think it is a help because I feel like docs already think us chronically ill people are a bit hypchondriac-al, without us asking them every 2 months to PLEASE check something else! Kind of empowering... Diana

You guys are going to think this sounds NUTS, but when I'm close to sleep (either going to sleep or waking), I can feel this buzzing sensation. What's weird is that it is EXTREMELY subtle, and I'm really only aware of it because every few seconds it stops for a microsecond, then starts right up again. It's not my ears, but I don't know what it is. My hubby thinks it may be some sort of nerve stimulation from being so hyperadrenergic. Weird, weird. And you can BET I don't discuss it with the docs!! Hang in, Diana

I have this strange spasm that starts near my shoulder blade, then seems to wrap around my chest, and then sometimes down my right arm. I have it with some regularity, too. If it was an electrolyte imbalance, I think I would get it in some smaller muscles, too. I don't get foot cramps or anything, though, so I believe it relates to the POTS somehow. They just don't know, yet. Good luck! Diana

Hi, I just wanted you to know that I take a 50mg tablet of Toprol, cut it into 4 pieces, and take 3 pieces a day. I think I may need to go up on it a bit though. Have you considered taking a little at a time? Diana

Hi, I just wanted to tell you (or remind you, if you've heard it before), that beta-blockers can cause impotence. And it looks like you are on a high dose of one of them (was it propranolol?). I hope that your tests come back OK. I was always hoping that something would come back positive with my testing, actually. At least then we could know the enemy and fight him. It seems like with POTS, you just try to cope, but can't really fight. Makes me nuts. I also have numbness in my right hand and diarrhea (alternating with constipation - now isn't that just lovely!). Please let us know how your tests come out! Hang in, Diana

I am so sorry you are having so much trouble. When things are the worst for me, I just need a way to escape or distract myself from the misery. I have had to resort to taking a sleeping pill during the day to sleep through the worst of the storms. Or sometimes, my husband will just massage my back while I try to get through it. They are just miserable and there are few ways to escape. Please try to remember that they do seem to end at some point, or at least improve to where you are only semi-miserable! And remember that you are not alone, and you are not crazy. Hang in, girl. Diana P.S. can I ask you what "restrictive lung disease" is? I have an incredible amount of trouble breathing.

I have two words that I forbid my doctors to use. One is "stress" and the other is "deconditioned"! I was told that my weakened breathing was consistant with deconditioning. But, I was always a big exerciser and had trouble breathing FIRST, before any autonomic functions surfaced. I know that the muscles can't be strong one day and weak the next for no reason. And I continue to do the recumbant bike religiously, because I was under the impression that if anything was going to help, exercise would. There were many days that that was all I was able to do all day, but I did it. So, I am NOT deconditioned, yet my ability to inhale and exhale is extremely weak. It has felt like I was breathing through a small straw from day one. My pulmonologist presumes it is nerve damage to the muscles that help me breath. My husband says that I breath almost twice as fast as normal when I am asleep. I really believe that a lot of us with shortness of breath have some decreased lung function that is going undiagnosed. I wish the docs would look into this more thoroughly. Dr. Fealey at Mayo told me that some patients had to "learn to breathe again". But, he thought these people tended to hyperventilate, which is not my problem. I don't think he is completely understanding the problem, dog-gone it. Maybe this is just a problem for those of us with POTS secondary to a virus? Thanks to everyone for listening! Diana

Hi Margaret, Thanks for letting me know! My inspiratory/expiratory percents were 64% and 42%, respectively. I don't see any numbers for VECo2 here, though. I'm so glad that you are doing better now. Thank you for telling me what's going on. And I sincerely hope that your improvements continue. Diana

Hi Margaret, I'm not sure what numbers you're referring to. Is VECO2 the diffusion number? If so, mine shows to be abnormal, but improving. My FVX1 is about 80% of predicted. Have you had POTS for long? I've heard that after 2 years, improvement goes slower, so I'm hoping I can still improve my lung function. Exercise has helped my tachycardia, so I'm hoping that by working the breathing muscles, it will help stimulate the nerves somehow... My husband found the inspiratory trainers for sale in a triathelete magazine, BTW, if you need it. Are you hyperadrenergic, too? I'm starting on yet another beta-blocker (Toprol). So far so good (day 2). Take care, keep breathing! Diana

Hi all, I've had hyperadrenergic POTS for about a year and a half now, and some of the symptoms are improving, but I still have so much trouble breathing (it feels like I am breathing through a straw), and am hyperadrenergic. My neurologist wanted me to see another pulmonologist to be sure that the POTS isn't secondary to something weird with my breathing. Well, we went to Tyler, Texas yesterday to see this (great) doctor! My lung capacity is reduced but he thinks it is because I have a small chest cavity. However, my ability to inhale and exhale (called "MIP" and "MEP") is reduced by about 50%. He said that can be from weak breathing muscles, but in my case is more likely damaged innervation to the muscle. This wouldn't be so much trouble to most people with normal lung capacity, but is very hard for me to accommodate. Has anyone else shown reduced MIP's and MEP's? I got this from a virus, and I personally believe that this assault on my breathing is what started the entire cascade of POTS. If you are having trouble breathing, be sure to ask them to check your MIP and MEP. They've got me on a type of "pulmonary rehab" where I **** into this instrument in attempt to regenerate the nerves and make the muscle stronger, if possible. Is anyone else dealing with this? Thanks! Diana

Hi Finette, Can I ask you how you know that you have damage to your solar plexus? It sure sounds like me, too, but how can a doctor check for that? Thanks!

Hi everyone, Does anyone else have difficulty sitting up straight (as in a stool, for example)? My symptoms are terrible unless I can sit back and relax my abdominal muscles. Does this happen to anyone else? I also have discomfort around my diaphragm area, much like there is a water balloon in there. It goes away when I lie down. I also have difficulty breathing that gets much worse when I sit up for a while. What do you guys think? Thanks! Diana

Hi Katie, I agree with everyone else. Poor breathing is my worst symptom, but it is NOT asthma. They proved it through a "methacholine challenge" test, trying to induce asthma. It showed I had ZERO asthma. But my breathing is very restricted... At Mayo, they said they don't understand why, but they had patients who had to "learn how to breath again" after POTS. Be careful that they don't medicate you for asthma if that is not what you have. Good luck! Diana

Hi everyone, I have hyperadrenergic POTS, with the tremulousness, shaking, difficulty breathing, chills, digestion problems, you know the rest. Well, I was filling out some paperwork to be a research patient at Vanderbilt and had to check my heart rate and BP after standing for 10 minutes. Interestingly, my tachycardia is basically GONE (at least in 10 minutes!). Has this ever happened to anyone else? I still have all the other symptoms and am basically non-functional. Can you have "POTS" without the "T"? I may not qualify as a research patient, now. Agh!!! Does it mean I'm getting better, but not better enough to function yet? I've been exercising very hard on the recumbant bike because I thought it might be the only way to recover. But I don't feel any better at all. What gives? Thank you for any insight you may have! Diana

Hi everyone, I really want to do what I can to try to control this thing (hyperadrenergic POTS). I've heard that caffeine, sugar, and milk products may make you more symptomatic. How about you? Do some foods make you more symptomatic? Better? For whatever weird reason, large chocolate McDonald's shakes make me feel better. I don't know if it is the cold, the calories, or what. What foods do you think I should avoid? Thank you! Diana

Hi guys, I'm kind of embarrased to tell you guys this, but hey, what are friends for, right? I was having trouble with "getting in the mood" UNTIL I tried some of the warming KY liquid. I think because my blood vessels over respond to certain stimuli, it actually makes my libido BETTER than it was before POTS! I kid you not. It causes vasodilation in "that area", and the desire goes right up with it! With POTS, I get too much vasodilation sometimes, causing migraines, pooling blood, you all know what I'm talking about. Well, I think my response to that warming liquid is more than what a non-POTS person would experience. Very effective. Mind you, sometimes I just cannot/will not be intimate if the symptoms are too bad, but it has helped me TREMENDOUSLY. Have fun! Diana

Hi, I HAVE BEEN HAVING THE EXACT PROBLEM! I think it is a good idea to have it checked, but I wanted you to know that I've been "regular" lately, but I feel like I'm incredibly bloated. It's not gas. the area around my two lower ribs and around my diaphragm is sore, and my ribs can ache just like they did when I was pregnant. My ribs sometimes feel like they are being pulled apart. Interestingly, I feel more distended than I actually look sometimes. I did notice that if I push on the edges of my lower ribs a little, I can feel a tender spot that seems like an irritated nerve. Personally, I believe that the docs just haven't figured it out yet, but whatever is going on there may be related to my breathing difficulty. Please let me know what your doc says! Do you have breathing problems? Diana

Hi, I have also had fairly extreme hair loss. I have hyperadrenergic POTS and I wonder if it has to do with the fact that everything is in "hyper mode". Anyway, after you have the doctor check for the obvious causes, if it turns up nothing, you may want to try adding a biotin supplement (my doctor recommended it). It is over the counter, and there is also a supplement called "NU-Hair" that has a lot of biotin, along with other stuff. My hair loss is improving and I'm not sure if it is the biotin, or just time itself that is helping. Nu-hair was effective in helping my friend with cancer, too. Hang in, Diana

Hi Kimberly, Yes, migraines go along with POTS. It's as if our blood vessels forget how to act, sometimes constricting and sometimes dilating inappropriately. Yours sure sound like low blood pressure episodes, and migraine episodes. If you get the headache right after, then they are definitely migraine episodes. But usually, the episodes occur without the headache. It is good that they only last a few seconds. We docs worry about blockages in the arteries if they last longer than that. Hang in, you are not alone in this! Diana

Hi Kimberly, I'm an optometrist with POTS and I may be able to answer your question about your vision. First, though, can you tell me what you mean by "losing" it? Does your vision go black? Is it in one eye or both eyes at the same time? Or is it small pieces of vision that grow? How long does it last? Or do you mean that your vision goes blurry? I, too, have visual disturbances. Some of them ARE "migraine episodes" where small pieces of my vision seem to shimmer and they grow over about an hour. These are always both eyes at the same time. Other times I have complete loss of vision in one eye only, except for a small island in the middle. This is a vascular event which, for no apparant trigger, the central retinal artery to the affected eye constricts. Hope I can help you. Diana

Hi all, I know that POTS usually affects women of pre-menopause age, and most everyone here seems pretty young. I'm 48 years old. Am Ithe oldest one here? If so, should that give me some hope that this will improve soon, maybe when menopause kicks in? Is there anyone here in their 50's or 60's or higher? Thanks! Diana

Hi everyone, I've had POTS for about 14 months now (hyperadrenergic form). One thing that the doctors have not been able to answer is why my heart rate jumps up (15-20 bpm) immediately when I lean forward while in a sitting position (when my innerds are compressed). When my POTS began, I had a pretty sharp pain around my diaphragm, then a sense of fullness there, kinda like I have a water balloon in there. It is bad enough that I can't sit up straight much without the symptoms increasing. It seems to be from the abdominal compression. When I lean back and "give it some room", the heart rate goes back down. I think it could be blood pooling because CT scans show nothing, but that test is performed lying down (when it is not noticable). Does anybody else have that or have you ever heard of it before? Thank you! Diana

Hi everyone, this forum is wonderful for help, news and support. But I do wonder why no one on this forum seems to have recovered. Can we all make a pact? If we get better or recover, we promise to go to the forum and tell everyone? Does anyone here know of anyone who has recovered from POTS (I have viral-induced hyperadrenergic POTS, and am especially interested in recovery from that!)? I've read the stories in the introduction of this web-site, and they were'nt exactly uplifting. Any GOOD stories out there? I would think if you recover from this, you'd want to shout it from the mountain tops and encourage as many people as possible. The doctors say you "should improve". But I wonder if they are just saying that, because "I've never known a patient to fully recover" doesn't come off so well... Thanks! Diana

Hi everyone, I have hyperadrenergic POTS and a trial of beta blocker (nadolol) failed miserably. I was taking just 1/8th of a pill and still developed some wheezing, depression and my blood pressure and heart rate dropped TOO much when I was lying down. Even worse, it didn't even touch my symptoms of being flooded with adrenaline, tremulous,etc. Has anything worked for you? Does anyone know the "plan B" for hyperadrenergic POTS? Thank you! Diana

Yes, yes, yes! Difficulty breathing has been one of my worst problems, and it is REALLY bad in the heat. And it doesn't have to be 100 degrees! Anything above 74 or so makes it worse. An ice band around my neck helps a lot - it just allows me to get on top of it again. Hope that helps!