bebe127

Looneymom, Sorry I've monopolized your post. I do hope you get some answers and so sorry your son is going through this. I hope he feels better soon. You are such a good mom

I plan on going into the dr. soon and I want to get all information on testing that I can get my hands on. When dx. in 2009 the EP told me that I "probably have POTS". That's where he left it. He wouldn't/couldn't treat me and couldn't refer me to someone that could. He never told me there were different types nor suggested other testing. He told me to eat more salt and drink more water. Never put me on medication. Went in for a follow up and I explained all the symptoms I was having and he told me that he didn't know why I was experiencing all of them and that people live normal lives all the time with POTS. Now, four years later I am questioning even if I, in fact, have POTS. With the high NE levels, I do experience headaches (daily and sometimes migraine type that can put me in bed for three days), palpatations, have had issues with high BP although am now on BB's but still have spikes at times, anxiety issues, sometimes severe although since being on Xanax they have reduced considerably, nausea, but never vomitting. I would like to know whether I have any other issues. From what I've learned in my reading, I suspect Hyper POTS, possible MCAS, possible Grave's, possible Meneires. I want to find out what type of testing I might need to get done so I can suggest them to my dr. and hope that he doesn't look at me like a crazy person. Sorry to take over the post, just trying to get as much info as I can before seeing the dr. next. Thanks for your input Alex

Are these levels tested to determine what type of POTS one might have ie: Hyper, etc.?

Duh...sorry, I just realized you said blood catecholamines. I'm having that kinda day

This is done by blood draw I'm assuming? During my TTT they did no other tests and no one has ever suggested any other tests. I've often wondered if I have hyper because my bp rises and from the above article, the only symptom I don't have is sweating, unless of course I have a flushing type thing going on which is rare.

This is one great blog on Dysautonomia, I've been following this blog for a while and highly recommnend it as well.

I know this has been on here before, but I can't find the threads. Can anyone say what tests dr.s do to find out if one has high NE levels?

I don't know what to tell you Andy other than it's an encouragement that the cardio that you are going to see has at least some knowledge about POTS and hopefully will be able to lead you in the right direction. Be well

Everyone is different and reacts differently. I had my TTT shortly after an ER visit and short hospital stay by the EP that treated me at the hospital. Two months after my first episode, I had the TTT. No one explained to me what was going to happen or how the test was done. I can't remember whether I ate or drank before the test and I wasn't on any medication at the time nor was I water/salt loading. I had only fainted once in my life and that was about 20 years ago when I was a teenager. During my test, the dr. left the room saying, "most people don't react for about 20 minutes." Well, after three minutes my hr went up by 70bpm. I could feel it coming on and told the nurse that it was coming on and I started to cry. The dr. came rushing back in, I think at this point they lowered me immediately. He said that since he wasn't present, he'd have to repeat the test. They raised me again, and again, my hr went up, but this time a bit higher. They also noticed that my bp went up. During the second tilt, the dr. tried compressing my neck artery, that didn't help, he told me to cough, that didn't help, and then he told me to bear down, that didn't help (all while I was freaking out a bit and crying). All these things are supposed to bring your hr down. The third time, he injected me with adenosine. He explained that if I had an arrhythmia, this should stop it. It didn't stop it, it made it worse and I felt like I couldn't breathe. I was crying and they immediately put me down. I never fainted. In fact each of the three times they put me up, I had a reaction within three minutes and was put back down within five minutes. I never had any medication to elicit a response (that just seems torturous to me personally). The dr. came back with "you probably have POTS" and that's where he left it. Try not to worry. For me, it wasn't nearly as bad as I thought it would be and like others on here felt like a normal episode. I was just glad that they didn't pin my arms down. Good luck and keep us posted on the outcome.

Andy, There are many who were active prior to POTS. I was a bit active beforehand, used to ride my bike outside 9 miles, 5-6x/week, run, walk, Wii Fit, Yoga, Pilates (not all in the same day of course LOL!). After POTS dx. it all came to a halt, but have recently tried to start back with just some walking. It's not that I have exercise intolerance, mostly I just feel like poop and am lazy to boot. I've heard and read about many people getting great benefits from exercising. Most cardios, I would hazard to guess would give you the same advice. Yes, I have read that if onset is while your a teen there is a greater chance of recovery within a few years. Sadly, I'm old, LOL so the chances of mine going away are slim to none. I forgot to mention, but maybe you can ask your cardio when you see him/her about what type of pots you have. That can make a difference in treatment plans including the use of Beta Blockers. I've read that people with Hyper POTS shouldn't take BB's. I suspect I might have Hyper (because my bp goes up, not down and I don't faint, although I'm sure there is other criteria) but I'm on BB's. Go figure. Don't have dr.s around my area that treat POTS. My GP is treating me and a few other people with POTS as well, but I've never got the feeling like he is all that knowledgeable unfortunately. Still after four years I don't know what type I have. Keep us posted on how your cardio visit goes. Best of luck to you

Sorry Andy, I cannot answer that one. I have many symptoms that wax and wane, but shortness of breath is not one of them.

I'm not sure how much research is being done currently (so I might have to kiss the "granfathered" in senario goodbye). Dr. Blair Grubb is one of the leading Dr.s of this disorder. Have you read the information on Dinet.org, they reference him quite a lot?There is also a youtube video featuring another Dr. named Svetlana something or other (her name eludes me presently) found the website: . Also, if you look on my blog : http://sometimeshelplessneverhopeless.blogspot.com/p/helpful-sites.html I have some information in the form of websites, articles, and blogs that I have found to be quite helpful (this is not a plug for my blog, it's just easier than listing everything, plus if you go on the other blogs there is quite a lot of information there as well).BTW, welcome to the forum, hope you are able to get some information, support and encouragement This site has been a lifesaver for me! Best wishes, Bebe

No, I am not a dr. (nor have I played one on TV) although with all the research and reading I've done over the years (as many of us have) I think there should definately be a way to be "grandfathered" in I can only speak of my experiences. Like I said, I do feel as though the medicine has helped keep my bp and hr in check, although I still have occasions where I have tachycardia/bradycardia. Happens for no apparent reason at times, at other times it happens if I'm out in the hot sun or standing for a prolonged period. I have no experience with asthma, so I can't answer that question, sorry. On the subject of anxiety...I have always been a stressed out kinda anxious person, it's just my personality. Since having my first episode back in 2009 which the EMT's stated was an anxiety attack, I've had issues with this, sometimes severe. After an ER visit and trips to an EP that dx me with "probably POTS" in 2009 I've experienced anxiety quite frequently. Currently my GP has me on Xanax .5mg 3x/daily and quite frankly, I don't think I'd be able to function without it. Before POTS, I didn't really have issues with it. I have to make sure to keep my stress levels down as much as I can, and the littlest of things can set me off now, whereas before it wouldn't bother me as much. Since POTS is a form of Dyautonomia, and Dyautonomia is basically whackiness (quite the technical term) of our Autonomic Nervous System, and since anxiety is controlled by our ANS, it would only make sense that we seem to be in a constant "fight or flight" state. In answer to your question, and again, I'm no dr. I think yes, provided you are put on the correct BB with the correct dosage, you should see a difference in your standing heart rate. Best of luck to you in finding what works for you. Be well!

Also, (and I'm no dr.) the dosage would determine how much it is lowered. As stated above, everyone is different and reacts differently. When I first started out, I was on a lower dosage. Once we played around with it for a few months we settled on the 75mg daily. My dr. has told me that he has another patient (with POTS) that is on 300mg. daily so, it just depends on your body and your needs. Meds can be a tricky trial and error ride.

Andybonse, First, everyone is different and reacts differently to various medications. I am currently on a BB Metaprolol 25mg 3x/daily (75mg/daily total). I was under the impression that this would keep my blood pressure in check (I have a tendency to have high bp) and regulate my heart rate. It seems to do both most of the time. It doesn't reduce my hr tremendously, but keeps it in the 80's. Sometimes though, I still get bouts of tachycardia (hr 120+) but it happens rarely now, usually if I've been in the sun or standing for a prolonged period of time. There are many BB out there and I would think that each one might do something a little different. I never faint or feel like fainting either. While it does help with the bp and hr issues that I have, it does nothing for the myriad other symptoms I deal with daily. I do feel as though I am doing much better now than I was a few years ago. Don't know if it is the meds., my resolve and resignation to having this illness and just learning to deal with it or a combination. Talk to your doctor about the effects of any medication. I know that a few months ago, my dr. wanted to increase my dosage to 100mg/daily but said it could lower my bp too much and I could feel faint or faint. My husband and I decided that it wasn't worth the risk and that I'll have to learn to continue with bouts of tachycardia/bradycardia. Best of luck to you. Bebe

Kooky, Just hearing that the appointment went well, you were happy with it, and the doctor seems to be willing to help you out is such an encouragement. Unfortunately, the waiting game is a necessary evil when dealing with this (and many, I suspect) chronic illness. Best of wishes to you Be well!

POTS is enough for any person to wrap their head around. I too suspect that I might have MCAS, but really don't know where to turn. I am going to bring it up to the dr. when I go in next. There was a great article in the Dinet Newsletter about MCAS: http://dinet.org/2013Winter.pdf and there have been several threads on here about MCAS, although for some reason I can't get the "search" to work, you might just have to scroll through the discussions. Problem is, is that there are so many disorders/syndromes with overlapping symptoms that it is hard to figure out. I feel like I have to go into my dr.s office and say, "Well, I have this, this, and this (plus a bazillion other symptoms)...can you please test me for MCAS, Lupus, Addison's, Grave's Disease and a host of other things please?" I go over this senario in my head numerous times with the possible responses from the dr. being: "This lady is crazy and needs a padded cell." or "This gal is a couple cards shy of a full deck." Of course my hope is that they will say, "Of course, Mrs. so-and-so, we are going to get to the bottom of this and get you back to your old self once and for all!" A girl can dream, right?? Anywho, press on we must, if we are going to advocate for our own health. I mean really, if we don't...who will?? And yes, it's like peeling an onion, one layer at a time sadly, with tears in between. Hope you get some answers Sulfilizard Be well

BTW, I also had a treadmill stress test a few years ago in which the results showed that my heart had "above average exercise capacity", yet I have POTS. Hmmm. All my other tests, EKG, Sonograms, etc. all come back normal. Tested positive during TTT a few years ago.

Keep us posted on what the Cardiologist has to say. I don't get really bad symptoms either, although it all depends on the day. I'm with you, I don't like the feeling either, it can really freak me out at times, which of course can just make things worse. I have been much better as of late though, I don't know if it is the meds, my resolve to this illness, or what. I'm just trying to take it one day at a time and do what I can when I can. This forum has been a tremendous help for me. I wish I would've joined sooner than I did. I certainly helps to know that we're not alone I was active as well before my sudden onset a few years ago. Used to ride my bike 9 miles a day 5-6x/week. Worked out on WiiFit, did yoga, walking, running. Personally I really think the term deconditioning is overused and misunderstood (not directed to you personally at all). Unfortunately you'll find this term in a lot of articles relating to POTS. There was just a recent thread on here about that: http://forums.dinet.org/index.php?/topic/23238-grinch-really-caused-by-deconditioning-really/ When I hear deconditioned I think of my late mother who was bed-bound for much of her last eight years after a botched routine surgery. She was literally an invalid. In other words, I believe (and I'm no dr.) that deconditioning is a result of prolonged bed bound type lack of activity if that makes sense. I don't believe that people who exercise less or not at all but still manage to walk around, do dishes, laundry etc. can truly be considered deconditioned. There are many on here that lead very active, exercise-filled lives before POTS and there are some that are still active despite POTS. I think it is important to get a bp/hr monitor and check your vitals regularly and keep track of the results. I take my notebook in to my dr. so he can go over my vitals. Any information we can give doctors is always a help. Who knows, you or your dr. might find a pattern or triggers that can help in what type of treatment protocol he/she uses with you. There is never too much information you can provide to your dr. in my opinion. Best wishes to you

Andybonse, Welcome to the forum! In answer to your question, everyone is different, well, let me back up a bit... "Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising."(This is from Dinet.org in the POTS explanation if you haven't had a chance to go through it) I was dx in 2009 with "probably POTS" through a Tilt Table Test (TTT) This test, I believe is the standard test in identifying POTS. Usually a Cardiologist/Electrophysiologist will give this test. Personally, my heartrate goes up and down. I've been on medication for about 2 years that has seemed to help although I can still experience tachy (hr at 120) while making the bed or doing dishes or being in the sun. It doesn't happen for me all the time. Usually I can go about my daily chores without a problem. If I do get tachy I usually have to lay down and try to relax until my hr goes back to normal, but this doesn't happen too often. It is important to try to find a doctor that has knowledge about POTS/Dysautonomia, and that is willing to work with you. Have you seen a doctor? Have you had tests run? Do you have any other symptoms? If you look on Dinet.org's main site, there is quite a lot of information that is helpful. Best of luck to you. Be well

Kooky, Welcome to the club!! Sorry you had to end up here, but glad that you found this site. It has been quite helpful to me. Those on this site are so compassionate, helpful, and encouraging. I agree with Aussie in that it would be helpful to nail down a dx. This can be a long road unfortunately. I too was dx. with "probably POTS". I would try as well to get a TTT if you have a hr increase of 30bpm or greater upon being upright, you'll get a dx. of POTS. This of course doesn't necessarily mean that that is all that is going on. That would be something to discuss with your dr. For me personally, I had an increase of 70-90bpm after 3 minutes during my TTT, although my bp didn't lower, it actually increased. Dr.s use different meds for different things, so I think it's important too, like Aussie said, to talk to your dr. and possibly see a Cardiologist or Electrophysiologist to rule anything heart related out. Medication can be a tricky thing, it is basically trial and error. You need a dr. that you can work closely with that is willing to listen and help. Best wishes to you as you begin this journey. Again, glad you found this site, you are not alone in this Be well, Bebe

I'm so sorry you are having to deal with this. I say kudos to you for even working in the first place, but I know (with me at least) the littlest thing can set me off. I can't really give any advice, can only share experience. I hope that you find out what it is and get some relief soon. I think I've experienced something similar early on. It happened during my first episode and my facial muscles would tighten up and I would talk funny. My husband would always know that something was wrong by the way I spoke. A few times this happened and not only did my face tighten up, but my thighs/legs (even to the touch, they felt taut) did as well. The first time, I wasn't under stress other than I didn't know what was going on with my body. The next few times, I was under stress but not an inordinate amount; I was driving my kids somewhere and when I got there I was all locked up. It was very weird. I also had other symptoms, rising bp, fast hr, sweating, shaking, etc. I was put on Xanax a while back. I don't know how you feel about anti anxiety meds, but I tell you, I really think that is the only thing keeping me somewhat sane and able to do some of the things I normally couldn't do before, ie: driving. Hope you get some answers! Be well, Bebe

AmberK, I think they just schedule a 45 min. block. Everyone reacts differently to the test. Some, like me get results withing 3 minutes of being put upright, but then the dr. may have to replicate the test. In my case, he had to replicate it 2 more times. During my first upright, the doctor actually left the room stating that most people don't respond for at least 20 minutes. Little did he know that I would respond in the first 3! Some people take longer, just depends on the person. Good luck!

Angelloz, I don't even know if 46.2 is considered high, only that the dr. didn't make mention of it as being a problem. I forgot to mention that during one of my first exams, the dr. noted that my thyroid was enlarged. Hmmmm....In my recent reading as well, I read that one of the treatments for hyperthyroidism is to take BB which I'm already on, but still have many of the symptoms. Again...Hmmmm! I wish I didn't have to do all the legwork on finding a dx. I really thought that that is why one hires a DOCTOR!!! I'll keep you posted. BTW, thanks for the response Be well

BTW, this was another article I found about hyperthyroidism in which case, I have all but maybe three of the symptoms. Makes me wanna go hmmmm.... http://www.endocrineweb.com/conditions/hyperthyroidism/hyperthyroidism-overactivity-thyroid-gland-0 Tell me what y'all thing or if any of you have had experience with this. Thank you in advance. Be well