dianaD

Thank you all so much! This is extremely helpful! Diana

Hi, I have POTS and EDS, and now my hypermobile son is fainting when he stands, has abdominal pains, fatigue, blah, blah, blah. So, who do you take kids to see with this? I don't want him to have a lot of unneccessary tests like I did ( he is 8). Is there someplace that is familiar with kids and dysautonomia? Should I wait months for Dr. Grubb? Any suggestions you have would be appreciated. Thank you! Diana

When I first got hit with this, I tried to work for a few days, then the "hyperadrenergic" part kicked in and I stopped in my tracks. It has been almost 2 years now, and my briefcase is still on my desk at my office! I have some professional disability insurance (praise God), but I would LOVE to be able to work at least PT. I am, however, able to do some bookwork on my computer and some building management stuff when I feel strong. And I have 2 kids that I can' kind of take care of, but it is VERY tough, we lay around a lot, and they don't get baths all that often. It's just SO hard... Diana

Oh my goodness!!!!!!!!!!!!! Unbelievable! Does that mean you passed the test? "If this test doesn't kill you, then you pass." Ha. I'm so glad you pulled out of that one!!!! I hope you'll be back to POTS-normal real soon. Diana

Thank you for your help! I'll see if I can get in to see a rheumatologist when I get to Mayo! Diana

Oh, Julie, I am so sorry that you are going through all of that!! It sounds so miserable... Are you having trouble breathing, too? If it helps, I have back and neck problems, and was told I have NO curvature left anywhere on my spine! My hip pops out, my shoulders (although that is painless), my fingers are starting to hurt, and ONE OF MY TOES pops out of joint. Boy, I bet you feel better NOW, knowing about my TOE! Actually, I hurt that toe a year or so ago, so that's probably a different deal. Please hang in, Diana

Hi guys, I'm off to Mayo next week, and I'm going to ask them to check for Ehler-Danlos (I'm 95% sure that's what's going on, in addition to the POTS, of course). My question for you is -- Can Ehler-Danlos cause loose ligaments to the diaphragm? My ability to inhale and exhale is very low, and it feels like my diaphragm muscle is cramping up. I've got loose ligaments every place else. Is it possible that my diaphragm is involved? And, what kind of doctor can best diagnose and treat EDS? Any info you have would be appreciated! Thank you! Diana

Nina, I don't have any answers for you, but I wanted you to know that that question was one of the questions on my symptoms questionaire from Mayo. So, somebody else is wondering if it is related, too. You must not be the only one... Diana

Hi, I have to agree with Carolyn. I'd try to find a doctor with is familiar with treating dysautonomia. They may want am MRI (mine was clean, too), but they may not feel that they need one. Like Carolyn said, once you get to good doc, they can figure things out pretty quickly because they know what to look for. I had every test under the sun (all normal, pretty much) for 9 solid months. Went to Mayo, and within 40 minutes, they figured out it was probably POTS. They had me in testing the next morning, and within 5 minutes on the TTT, BINGO! a diagnosis!! The next day, a treatment plan (now the treatment plan didn't work, but, hey, that's asking a lot!). Did you check the doc list on this web site? Diana

Hi, I was on Zebeta for a while. It is more cardio-selective than most beta-blockers, meaning it should reduce your tachycardia, without affecting other organs. So, it DID help my tachycardia, but that was the least of my problems! I needed something to help with the FLOOD of adrenaline (tremulousness, over-responsiveness, etc). It really shouldn't cause depression or pulmonary problems as easily as others, but I got both of those problems, and discontinued it. The only good consistant effect I've had from beta-blockers is that I always feel better when I go OFF of them! ha.

Hi everyone, I just wanted everyone to know that Mayo has a couple of POTS research studies going on right now, and I'll be headed there in a couple of weeks to go through the studies. I am grateful to this forum for discussing the studies and alerting me to them. I actually get to see Dr. Low!! And she made the appt. for 2 weeks from now (not the expected 6 months!). Yeeeehaw. One of the studies was discussed on the forum before. It involves a lot of questions about your symptoms. There were a lot of questions about swallowing difficulties, GI problems, partial paralysis, in general, a lot of questions that seem to involve what a lot of you go through, but have no answers for. It is all through Dr. Low's office in Rochester. As some of you know, I've been on minocycline and am doing better, but I can't be sure that it is the minocycline doing it. That is one thing we will be talking about, and I'll keep you guys posted on how it is going. At a minimum, I want the researchers to know that minocycline really helped the autonomic symptoms of my friend with Shy-Dragers, and the doctors now agree that it prolonged his life. And Mayo is studying minocycline with ALS right now, but they haven't looked at it with Shy-Dragers, so they were excited to hear about it (or at least the lady on the phone was excited). As horrible as we feel, after watching my friend go through Shy-Dragers, I know that THEY are the ones who REALLY have a raw deal.

Hi roselover, I was just on the phone to Mayo, and she said they were having the most luck by combining Mestinon and Midodrine. Have you tried that? It may be tough to get the dosages figured out, but I'm a big believer in needing something else to try!! There is ALWAYS something else to try!!

Hi Kate, I'm so sorry that you are going through this! Dr. Grubb ("THE" POTS doc), says that there is a 75% chance of complete recovery if you get pots as a teen. Please check for my post on your question about your piano and singing. The world NEEDS what you have to offer with your music. And having this disease will give you empathy beyond what most people are capable of. You CAN come out of this a better person!! You WILL see the light at the end of the tunnel someday. Hang in, Kate!

I am so gald that you posted this question!! With all that I've lost (work, my kid's functions, traveling, feeling good, etc), what I miss the most is my music. And I'm not that good!!! But singing in choir and playing the flute in orchestra was where my joy came from -- I'm sure you can relate. Anyway, I want to give you some hope. I tried to play my flute a little bit for the last year and a half, but it made my symptoms much worse, and I just couldn't maintain it. However, I'm getting a little better now (since I started minocycline - I wish I knew if that was why I am better!), and started my flute again. I am actually taking lessons and he said that I am ready for the community band here, no prob. I have adrenergic POTS, and get flooded with adrenaline sometimes. BUT, I've been able to make the lessons and I actually feel kind of "high" after the lessons. No matter how sick I feel, if I just GO, I do fine and then feel better. It may have something to do with how POTS affects the brain chemicals (but I'm just guessing). I know when things are bad they are REALLY bad, and the depression can be debilitating, but when things (like playing the flute) are good, I overcome my symptoms and (mentally at least) feel good! I wanted to give you some practical advice, too. I can sit up longer, with fewer symptoms, if I wear an abdominal binder. It isn't something you'd want to do all the time, but for piano playing, it just may fit the bill. You can get them on-line, or even at the drug store. They're usually used for post-surgery patients. It's like a big piece of elastic, fastened with velcro. I'm guessing it pumps the blood back up to my head. It really helps and may be enough to get you through a practice/performance. If you are too symptomatic, I would encourage you to NOT give up. I would cry sometimes when I saw my music sitting there, but DO NOT GIVE UP. Pull it out when you can, enjoy it when you can, and ASSUME that you will get back to where you were with it soon. I'm at a higher level with my flute now than I was before I got sick, and that's just from playing "sometimes" when I was really sick, and daily now for the last month or so. No matter how brain fogged I am, I can still seem to play it! Must use a different part of the brain, or something. Hang in, and keep singing and playing when you can!! Oh, I forgot -- I asked Dr. Fealey at Mayo if playing or singing would make my POTS worse. He said NO! It may make my symptoms worse temporarily, but he encouraged me to keep trying, because he thought it may end up helping my inability to breath!!! So, Don't be afraid that it will make your condition worse by trying! Hoping for the best for you and your voice,

This is one of the most frustrating parts of this condition -- the unknown. Will I ever have a "normal" life? Will I get worse? The best, i.e. most accurate comment I've heard was from Grubb's latest article. I think he sees the most POTS patients and seems to LISTEN to patients when they explain how it has affected their quality of life. He said that about 50% of people with "regular" POTS will recover to the point they will have few or no limitations on their lives. This can take 2-5 years. Your chances of this level of "recovery" are better, the younger you are. He said that 'Hyperadrenergics" will need medications all their lives. If the POTS is secondary to another condition, it depends on treatment for the underlying cause. Her said that studies will need to be done to obtain firmer numbers. These are his best guess, from what he has seen. There is still hope for us, as long as researchers are still taking an interest in this condition. Meanwhile, we probably know more about POTS than most docs-- even some who "specialize" in POTS. So, we have to keep looking for new treatments and, if needed, new doctors. Hang in,

Julie, Thank you for all of your efforts and work. If you would like, you could give some of us a copy of the papers you give out. I, for one, would be happy to join you in the quest. I'm sure there are others out there who would do the same. Feel free to PM me, Diana

Talk about something to take your mind off of POTS! Anyway, I would tell your doctor that you need to speak with the anesthesiologist PERSONALLY about your dysautonomia (and I would use that word, instead of "pots" with the anesthesiologist. They seem to understand that better). You want to be sure that he understands that you can over-respond to medications, and that your heart and BP can go NUTS. You also want his/her reassurance that he/she will NOT leave your side, even for a moment. If they can't do that, you need a different anesthesiologist. Hang in, girl, it will all come out OK (stage one -- a no brainer for docs). There should be a law that if we have one condition (pots), we can't be ALLOWED to develope anything else!! Just doesn't seem right, does it? Please let us know how you're doing...

When I was breast feeding, I promised myself that while the baby drank, I would be sucking down the water at the same time. I had a big ol' insulated mug with a huge straw, and finished one of those EVERY TIME I nursed. And that was before pots! I would think that hydration would be a MUST for you. Maybe that will help! Have fun! It's an incredible experience!!

Welcome back! Those are some pretty weird symptoms, huh? I was just thinking that if you feel better less heavy (PLEASE don't resort to bulemia!!), you should ask your doc for some Xanax or clonazepam to use at night instead. Just take a little, and you will get the same calming effect without the alcohol. It's pretty much the same feeling for me. I hope your job search goes well. And remember that your body is a temple, even if it is in need of repair. It is our job to treat it as well as we can. Then , WHEN the pots is gone, we will still have a healthy body to live in!! And you'll feel better while you are still in the potsy thing, too. Hang in,

All of my friends know that I need to have a back on the chair, and it can't be a straight back chair (or the pews at church kill me!). I have to be able to lean back just a bit (like the big stuffed chairs at STARBUCKS!). so, that is where I go. Starbucks. For everything. Ha.

I totally agree that you should write a letter. Tell all the gory details, especially what you heard him say, when he thought you weren't listening. Things are not going to change for him, unless somebody wakes him up (or if he gets POTS himself which would be SOOOOO gratifying, don't you think?). I pray your next one is a GOOD one!

Hi, This is something that I'll be talking to the docs about, but I've been on minocycline and am getting better. We don't know that it is the minocycline doing it, but about 2 1/2 weeks after starting it, I was significantly better. Mayo is doing a study on minocycline for ALS, and my friend with Shy-Dragers had a significant improvement in his autonomic symptoms when he was on it. You can google "minocycline nerve" to see how much work is being done with minocycline and neurologic disorders.

Holy cow, I don't think we even have the same illness!! Two hours of exercise!!??!! I'm impressed. I'm no exercise wimp - I used to run about 35 miles a week and taught aerobics for years, but now, I FORCE myself to do 30 minutes!! I told my doc that it feels like I have a 101 degree fever, somebody just kicked me in the gut, stuck a straw in my mouth and told me to exercise like that. It is HARD!!! Dr. Grubb says that more than 30 minutes MAY be counterproductive. We are all different, though. Early on, exercise was the only thing that seemed to really help me. That's kind of leveled out now, though. YOU need to tell US how to get THAT functional!! What IS your secret? What meds are you on? I want some! Thanks!

Dear DK, I'm glad you found us here, but I'm sorry to hear about your husband's difficulties. He will appreciate any and all patience you can find for him. I don't want to alarm you, but when your husband said he walked "drunk" sometimes, I just wanted to be sure that a doctor has ruled out multiple systems atrophy (also called Shy-Dragers). A friend of mine who had it showed that as one of her early symptoms. Hopefully, you guys just have "plain ol' POTS" to deal with and if so, I hope we can all answer every question you have. Believe me, you get to be somewhat of a medical expert after a while.... Hang in, Diana

Hi Rita, I haven't, but I've THOUGHT about it. I'm kind of doing a "self analysis" with "diet power" software that gives you summaries of your nutrients, etc. That, and a blood test from my doc to check for any deficiencies. I hope it helps you!