dianaD

Hi, Boy, if it were me, I'd be begging a friend to take me, or go with me. but if that is just not a possibility, I took a road trip a couple of weeks ago and made it through. I took 2 pillows, 2 xanax, my headset with relaxation music and slept 80% of the time. Just make sure somebody wakes you up! Also, sometimes ice at my neck stops attacks, so you could keep baggies with you and fill them at rest stops, if that helps you... Also, my son sings this little Bible song that helps me if I feel weak: "Have I not commanded you to be strong and courageous? Do not be terrified, do not be discouraged, for the Lord, your God will be with you, wherever you may go. Hey! Hey! Hey! repeat first verse. Guess you kind of have to be there, huh? Hang in!

Hi, I was pretty sure I had POTS when I went to Mayo. My neurologist wasn't entirely convinced because my biggest complaint was shortness of breath. I asked him for a letter from him requesting that they consider autonomic dysfunction, though, and I think that helped. I called complaining of shortness of breath and they made an appointment fairly rapidly with a pulmonologist. I asked for the autonomic docs, but they said with shortness of breath, they would start with a pulmonologist. The pulmonologist suspected POTS (before he even read the letter -- my hat is off to him!). They said the autonomic docs were booked up for 8 months, but the next day, I had an appointment with the autonomic lab for a TTT. I failed, and saw the autonomic doc two days later! He was very nice and caring. I felt very optimistic with my diagnosis in hand and medications. However, there really is no follow up, so when I didn't do well on the beta-blocker, I didn't have any "Plan B"! Mayo is very impressive. Everyone was very nice and I efficient! There are some very smart docs there, too. I really needed a firm diagnosis that my professional disabiliity company would accept. And Mayo is considered the authority by most people (right or wrong). So that helped, too. All in all, I would recommend them. I bet you have a good experience. Keep us posted! And welcome to the forum! I hope we can all be of help to you!

Thank you for the wonderful info! As someone who is considering taking cymbalta, I am concerned. Isn't this what a few of us have been asking about with cymbalta? My adrenergic tendencies are so much better now, I'd hate to make it worse again! Thank you for any comments you have!

Drugs!! I take Lunesta -- works well, and I often mix it with Xanax or clonazepam. I wake up feeling so relaxed and sleep a full night. HOWEVER, I still get tired during the day. Sleep pattern disruptions are a hallmark of this condition, and I think that must occur even "under the influence" of sleep medications. I still couldn't get by without them, though, and my doctor agrees that sleep is critical to trying to heal this, and that Lunesta shouldn't be habit forming, anyway. I have NO qualms about taking a prescription sleep med. Good luck and sweet dreams!

Boy, it sure sounds like POTS! I saw so many docs -- even one listed on the POTS list, who is supposed to specialize in POTS, who STILL missed the diagnosis. I think I threw him off because I have such a hard time breathing, and the tachycardia is present, but not ridiculous. I just got tired of the doctor-go-round, and went to Mayo Clinic. Praise God, the pulmonologist recognized it within about 20 minutes and I was on a tilt table the next morning. My heart rate went up 50 beats in 10 minutes and the autonomic specialist saw me the next day, giving me the diagnosis of POTS. He also did a sweat test and a catacholamine test (blood test lying down and after standing) to confirm that it was the hyperadrenergic form. So, I guess it depends how easy it is for you to travel, and how tired you are of trying doctors, what your insurance covers and how sick you are. I had just reached my limit mentally and went where I thought I could get a diagnosis that everyone would respect (including my professional disability insurance company). Vanderbilt is a decent place to go for a diagnosis, and you would probably qualify as a research patient, meaning you can stay with them, and everything is PAID for., Yippee. Have you checked out the list of docs on this web site? Please keep us posted, and don't hesitate to ask any questions. Some of us here are pretty "seasoned" and are now big know-it-alls! Ha. Good luck to you!

I brought some relaxation music with me, but didn't need it because the techs had some playing in the background. Of course, once the table was tilted, I WANTED my heart rate to go up so I could FINALLY have a diagnosis. Yea, it went up 50 beats. Although I was shaking, I really didn't feel all that bad. I had heard so many horror stories about the TTT, I didn't think it was possible to leave with a smile, but I did. The techs and I were kind of clowning around, too, and that helped. I hope your experience is a good one, too. Good luck and tell us how it goes! Diana

Hi, I am a therapeutic optometrist -- getting from the expert here! That is called the caruncle, and is just a collection of "extra" conjunctiva. It consists of folds of tissue, so when inflammed (especially in allergies), it puffs up impressively and gets pretty red. Are you being treated for your dry eyes? There are so many treatments now, from prescription Restatisis to punctal plugs... Also, if your caruncles are inflammed, you very likely have an allergic component to your problem. Hope this helps! Diana

just to add on -- I would have your dentist take a look. My daughter gets them sometimes and he has a swab and rinse that can ease the pain almost instantly. Any chance of celiac disease or other GI issues? Recurring mouth ulcers can go along with those disorders, too. Good luck and keep us posted!

Hi, I also have high BP and tachycardia when vertical. I went to Mayo, and they said that is common for the hyperadrenergic form of POTS. The TRICK is finding something to help. You can search this site for info on the hyperadrenergic version, and the info might help you. Beta blockers are a first try drug, and the latest info I've heard here is that Dr. Grubb no longer encourages salt loading for us hyperadrenergics. Personally, I think this form of POTS may be a better form to have, because your blood vessels are still working, they're just not working CORRECTLY! If we can just get our thermostat fixed, we should work (verses others whose vessels won't work even if the thermostat is fixed!). May be just optimistic thinking... I've found that my BP/tachy is improving somewhat with time. How long have you been sick? It's been almost 2 years for me... Good luck, Diana

Been there! Sometimes even WITH sleepy meds! Usually, tho, Lunesta and/or Klonazepam does the trick. And sleeping DOES help. I used to hate taking medications, but now, I'm a bit believer in "health thru pharmacy"! Sweet dreams (try DRUGS!), Diana

My Obgyn was so relaxed about this. She stopped my periods completely, was not at all concerned about it, and said I could go without a period and stay on the pill into my 50's. It was a God-send for about 6 months, then I went off of them to see how I would do, and I was doing better. So, I'm off of them again. Previously, I just had to erase those 10 days from my life, basically. Good Luck!

Basically, I look and feel pregnant 60% of the time. I can't seem to eat many small meals, because sometimes I am SOOO much worse if I allow myself to get at all hungry. So, I've been known to eat some pretty big meals that just sit there and go nowhere. That sure doesn't help! But, yes, it sounds perfectly normal. I will tell you that I took Metamucil everyday for a couple of months, cut back on my eating, lost some weight, and it did help. But I still have that "baby". Think it wold be born by now. It's been a year and a half!. Ha. Hang in, Diana

I'm so sorry for the trouble you're having finding a doctor to help you. You are not alone! After reading about Lyme disease doctors (LLMD's) on this site, I found a local one on my insurance and he is great. I don't think I have Lyme and told him so, and he said, "All of these tests we are running may come up negative. But I still have a patient that I need to help." Wow! He sees a lot of chronically ill people (CFS, etc), and that helps. You may want to try the Lyme-net web site and see if any of those docs can help you. Mine is an internal medicine doc, who is familiar with POTS, TTT's, etc. It might be a good next try! Hang in and NEVER give up. There IS a doc out there who will help you!

Thank you so much for all of this information. I'm interested in knowing how your tests go, Lucfkychrm42! I just can't imagine how they must do that! I DO find that abdominal compression helps sometimes.l It can get so bad that it keeps me from getting a full breath (more so than the usual potsy shortness of breath). I'll try smaller meals and go ahead and keep using the abdominal compressor. I wish there was something else they could do for it. Do any of the meds decrease it? Thanks again, everyone! Diana

Welcome to the forum! I have found it to be a great source of information and inspiration. You've inspired me already!! You work full time and have a child!!!Wow, girl!!!! Look forward to your posts, Diana

I understand completely what you are talking about!! I think that this disease involves SOOO much more than just OI, so if they are looking at that to see how you are doing, they are only seeing a tiny portion of the condition. I think when all is figured out, they will discover that POTS is not just a postural problem, but OI is just one aspect of many aspects of this dysautonomia. Ever since I went on minocycline, my OI is vastly improved, as is my tremulousness and over responsiveness. Im starting to believe that I could possibly pass a TTT if it was taken in the morning. But wait until the afternoon, and I get much worse, with pain near my diaphragm, difficulty breathing, wheezing, gastroparesis, bloating, visual disturbances, blah, blah, blah. I'd be tempted to say something like, "Well, my OI is better at this point in time, but can change, and my other symptoms of dysautonomia are still debilitating. So, what can be done?" Good luck, and know that you are not alone! Diana

Hi, Has anyone here been tested for blood pooling in their abdomen? If so, is it worth it? Can they do anything about it if that is what they find? I have that bloated sense of fullness near my abdomen, and it restricts my breathing. It is always worse as the day goes on, and means that I really can't function after about 2:00. If I wear an abdominal binder, it helps some. But I've heard people mention this before, so I'd love to know anything you can tell mel. Does Dr. Grubb have anything to say about it? Thank you, guys! Diana

Hi, I was diagnosed as hyperadrenergic POTS by Dr. Fealey in Mayo Clinic last summer. I failed the TTT and had all the symptoms of hyperadrenergic POTS. Dr. Fealey gave me the diagnosis before they even had the lab results in (he felt that confident just by the symptomology). But the lab tests confirmed it - my catecholamines were high when I was standing for 10 minutes. My heart rate went up 50 bpm on the TTT, but only go up about 20bpm when I stand. My BP raises when I stand also, or when I exerise. My heart rate is controlled by Zebeta (beta blocker) but I may need to go off of it because of wheezing and depression. I take xanax and clonazepam, and they help, mainly by knocking me out! Early on, there was nothing I could do to control the surges. They just took over my body, and I was sensitive to any sound, lights, stress, etc. This has gotten better over the last year, and it has been over a month since my last surge. I can tell that I'm not as sensitive as I used to be. You should know that I started taking minocycline, which heals nerves, about 5 weeks ago. About 2 1/2 weeks after I started it, my tremors and adrenergic tendencies basically stopped! We don't know if that is from the minocycline or just coincidental, but if your doc is up for it, I would highly recommend trying it! Now, my only symptoms are exercise intolerance, difficulty breathing, and midsection pain. Hang in!

Hi, I'm so sorry about the trouble you're having! Have you been checked for carcinoid? Chromogranin A (a blood test) is the main test for it. Carcinoid can cause all of your symptoms and is a differential diagnosis for POTS. Please ask them to check for it! Diana

Hi, I've tried quite a few and got wheezing and depression. It's a sneaky kind of depression, too, so be careful. I knew it was a possibility, but still got sucked into it before it hit me what was happening! Good luck!

First I gained about 7 pounds. I was shaking a lot, and I had no tolerance for ever being hungry, so I ate a lot, especially milk shakes. Then I tried to eat very healthy, smaller meals and lost about 20 pounds in 3 weeks. I wasn't trying that hard, I think the adrenergic trouble was at an all time record. Since then, I've gained 20 pounds. I think it is a combo of depression, sedentary lifestyle, the adrenergic trend slowing down, the medications, and not caring what I eat any more!! I am showing insulin resistance now, and really need to get things back to an even keel, though. I so understand your frustration!!!

Difficulty breathing was my first and worst symptom for a long time. It felt as though I couldn't take in a full breath, and sometimes it feels like I'm breathing through a straw. My MIp and MEP (maximum inspiratory and expiratory pressures) are abnormally low. My pulmonologist thinks that the nerves to the breathing muscles are damaged. Have you had your MIP and MEP checked? It has gotten better over this past year, but when I'm vertical, it is still a problem. However, I don't feel panicked by it. Just FRUSTRATED!

Hi Belinda, I have very similar problems as you. S.O.B. has been my primary symptom for over a year, confounding many a doc. One "POTS specialist" even misssed my diagnosis of adrenergic POTS completely because the S.O.B. befuddled him (he didn't put me on a TTT!). I would suggest asking for some pulmonary tests including MIP and MEP (ability to inhale and exhale). Mine are reduced by over 50% and they think it is from damaged innervation to the breathing muscles. I am on minocycline which helps repair damaged nerves and it seems to be helping. When it gets really bad, a clonazepam seems to help, also. I think that S.O.B. is almost ignored as it involves POTS. Dr. Fealey in Mayo said that he does see it, but they just don't understand why it happens. It feels like something is tightening up, but who knows. Hang in,

If I have a half of a clonidine and 2mg Lunesta, I do well. I think the Ambien CR would be great for me, but my doc thinks Lunesta is better if I plan to stay on it long term. If I'm really in bad shape, I will even add a benadryl, but I have to be ready to be a bit groggy the next day. Or, I will go up to 3mg Lunesta (which leaves a bad taste in my mouth, but at least I sleep!). Sweet dreams!

Hi, This happens to me all the time. I would be worried, except the same thing happened when I was pregnant, too! My mom says it happens to her when she is low on pottassium. Have you had your potassium checked?