Wondering If I Might Have Pots

[atomic811]

Hi I am new here. My name is Brian.

I have been sick for about 18 years and have always been told I have anxiety, and while I feel I do have anxiety when it comes to seeing doctors and a severe phobia of needle, blood and fainting I am not a nervous person all the time, just in those situations. I have something else going on that I feel has been ignored by all the doctors I have seen through out my life and always just chalked up to anxiety.

The past 16 months however there is no doubt in my mind something else is wrong even if doctors I have seen continue to tell me it is anxiety. I will give a brief list of things I have. I am so tired (severely tired) I can not some days do much at all even going to my kitchen is a chore, I have no tolerance for heat, when I feel warm even if others don't feel warm my heart rate goes very high (higher than normal). I have a hard time taking a shower and as gross as this sounds sometimes have to go weeks without one. Even warm water takes a strong toll on me. I feel dizzy when I walk, but my blood pressure is not overly high or low while standing, but standing my heart rate is 120-160. If I stand up too fast I turn pale and sometimes at random times even sitting my face turns pale. I have gastro issues (IBS like), I am very medication sensitive. I took a few ssri's in my life to treat the anxiety they said I have and became very ill and only was told I was looking for side effects and I wasn't. I am on no medications right now at all. I can go from feeling just ok to feeling like I need to be in the ER only to feel ok again hours later. There are so many more symptoms, but I will start with that.

In the process of all of this I have lost my friends, my family and my doctors think I am just some hypochondriac.

I made a video not to long ago on a hot day and while I completely understand no one here is a doctor I would just like thoughts. I have been checked for anemia and thyroid issues, had a chest x-ray, several EKG's, a 24 hour monitor and an echo. All were normal except sinus tachycardia which they keep telling me is all anxiety. I have even been told by one doctor that I have a phobia of standing..I don't even know what to say to that. What I do know is I feel sick, very sick all the time and just wore out. My sleep is all over the place no matter how I try to sleep the same hours.

[Christy_D]

I am so sorry you are feeling terrible, for sooo long. My son has POTS and it took us 3 years to get the correct diagnosis, I can't imagine 18 years without the correct diagnosis. His symptoms escalated after a 7 inch growth spurt from the age of 13 1/2 to age 15. I would recommend you have a Tilt Table Test done. While my son was diagnosed based on his symptoms, he later had a Tilt Table done by specialists in Cleveland for further confirmation.

The forum is a wealth of information. I read it daily to get information. Have you approached you doctors with this possible diagnosis and the information to back it up?

(also, my son was told he had anxiety or depression or didn't want to go to school, your not alone with being told it is just anxiety. We took him to several doctors, all saying anxiety. It was a psychologist who finally said "This is not anxiety" and she researched his symptoms and got us going in the right direction)

[atomic811]

I am so sorry you are feeling terrible, for sooo long. My son has POTS and it took us 3 years to get the correct diagnosis, I can't imagine 18 years without the correct diagnosis. His symptoms escalated after a 7 inch growth spurt from the age of 13 1/2 to age 15. I would recommend you have a Tilt Table Test done. While my son was diagnosed based on his symptoms, he later had a Tilt Table done by specialists in Cleveland for further confirmation.

The forum is a wealth of information. I read it daily to get information. Have you approached you doctors with this possible diagnosis and the information to back it up?

Hi

Yes, I have seen 14 doctors in 16 months (this includes specialists) in my area and none of them believe me and not one has let me show them information, or allowed me to stand for a few minutes and show them. They keep saying "You don't faint". One doctor told me that POTS meant tuberculosis. That is why I might need to get out of my area. Only I have no one to get me there except myself. I don't know if I could pull that off. If they don't take medicaid I am stuck as well, it is the only health coverage I have. Actually one doctor did let me stand for about a minute and a half and I had a clip on my finger that he put on to take heart rates. It went from 88 to 100 to 110 then 115 and he took it off after only a minute and a half and said "let me guess you aren't an athlete?". I told him if he gave it longer it would continue to climb, but he didn't and talked about anxiety.

[lieze]

I'm sorry.

I haven't gotten much farther here myself.

My ER trips have basically been a total waste of time.

My family doctor was the one who suspected I have POTS and to her credit she did order a tilt table test for me but shhhh! I didn't really trust that hospital to do it and not kill me. So I have opted out and thought what difference will it make. I don't shoot myself full of nitroglycerin during activity anyway.

I'm sorry that you're feeling so alone there and no way to get help.

Are you drinking your fluids?-you need tons and exercise might actually help just be careful.

I do much better moving around than standing still.

[juliegee]

Welcome, Brian. You're in the right place The people here are incredibly knowledgeable and supportive. I have learned so much.

I highly recommend that you see a specialized cardiologist, called an electrophysiologist, familiar with autonomic dysfunction. In your video, you showed a poor man's tilt table test- done a tiny bit incorrectly. You should start by lying supine for 10- 15 mins for your baseline, THEN stand (perfectly still) for 10 mins. Any HR increase of 28-30 BPM from supine to standing is POTS. My guess is that your numbers will be even more dramatic when going from lying to standing.

It's not just anxiety- although dysautonomia can certainly cause that. There are doctors who can help you get on a more effective med/lifestyle regimen.

Sorry about your parents. Lots of people don't get this. We do .

Julie

[atomic811]

I'm sorry.

I haven't gotten much farther here myself.

My ER trips have basically been a total waste of time.

My family doctor was the one who suspected I have POTS and to her credit she did order a tilt table test for me but shhhh! I didn't really trust that hospital to do it and not kill me. So I have opted out and thought what difference will it make. I don't shoot myself full of nitroglycerin during activity anyway.

I'm sorry that you're feeling so alone there and no way to get help.

Are you drinking your fluids?-you need tons and exercise might actually help just be careful.

I do much better moving around than standing still.

I also do better moving than standing still or at least I just don't feel as bad. I do walk on my treadmill and do as often as I can. Some days I am just on the couch feeling like I have the worst flu ever. When I walk I get very high rates though. Just 2mph for 15 mins brings me to about 170. I take a long time to recover, by that I mean it will go down to 100 when I sit, but the sitting rate will stay high for many hours after. I drink a lot of fluids, so much so at one point I thought maybe I had diabetes, but my fasting glucose was ok and I even checked it with a meter on my own throughout the day a few months back for a few days (which wasn't easy for me since I don't like blood). I did notice that it spikes after eating, which I assume is normal, but it seems to drop fast. I have no idea about blood sugar other than it can with me be 130 and an hour later 71. Never got a number over 200 even after eating.

That is my concern about the tilt table test. I have such violent reactions at times to meds I just don't want to take anything (and I don't want to faint. I have fainted 3 times in my life and I hate it). With me actually having a severe needle/blood/fainting phobia my concern is I will be so scared of the IV and or med that I will lay there with 140 heart rate in a phobic response and when they tilt me up it will only go to 150, then they will just tell me anxiety because it only increased 10 beats. In real life in the morning when I wake up my heart rate is 64ish and when I stand after a minute it is 110. Even the tilt table test confuses me. For me it is not real life, I stand in real life on my feet flat on the ground. I even have days (though very rare) where my heart will stay normal ..meaning 78 sitting and 88 standing. That is very rare though.

There are times I get done cleaning one dish and feel shaky and it will be 160. My concern with being dismissed by so many doctors is I had never heard of POTS on till last year. I do not know 100% if that is it, since I am not a doctor, but I know I fit it more than anything else. Like I said I am not a doctor, but my concern is that it is something worse than POTS (by worse I mean dangerous). I would just like to be believed and be told, so I actually have a word for it and not keep being told I am nervous. Trust me I am not nervous 24/7 365 days a year. With what I go through you would think that I should be scared all the time. I guess I got use to it.

[atomic811]

Welcome, Brian. You're in the right place The people here are incredibly knowledgeable and supportive. I have learned so much.

I highly recommend that you see a specialized cardiologist, called an electrophysiologist, familiar with autonomic dysfunction. In your video, you showed a poor man's tilt table test- done a tiny bit incorrectly. You should start by lying supine for 10- 15 mins for your baseline, THEN stand (perfectly still) for 10 mins. Any HR increase of 28-30 BPM from supine to standing is POTS. My guess is that your numbers will be even more dramatic when going from lying to standing.

It's not just anxiety- although dysautonomia can certainly cause that. There are doctors who can help you get on a more effective med/lifestyle regimen.

Sorry about your parents. Lots of people don't get this. We do .

Julie

Thank you. I will look into finding an electrophysiologist. Up till now I have just seen two cardiologist out of my pile of docs that I have seen. I didn't really know there was such a thing as an electrophysiologist

[Simmy]

Hi Brian and welcome. I'm glad you found us, but sorry that you needed to.

I began my POTS journey the same way you just did, by posting a video on Youtube and then asking a forum like this one what they think, so obviously you're intelligent! And I doubt there are more than a handful of us who weren't repeatedly told we were suffering from anxiety. They just don't know any better and that's why we're here.

91bpm to at least 124bpm does fit the bill, especially considering you started from a sitting position. I suspect your supine heart rate is between 60 and 70, which certainly meets the criteria for POTS, but only a qualified doctor can make the diagnosis.

If you can afford 60 or 70 dollars, I highly recommended getting a heart rate monitor watch with wireless chest strap, so you can see your heart rates live, realtime, and see the trends as they occur. If nothing else, it will help you to identify what makes it better and what makes it worse. Perhaps you have a friend who has one that you can borrow.

For now, listen to your body. When it tells you things are getting fuzzy, stop and drop, but no need to roll.

[atomic811]

Hi Brian and welcome. I'm glad you found us, but sorry that you needed to.

I began my POTS journey the same way you just did, by posting a video on Youtube and then asking a forum like this one what they think, so obviously you're intelligent! And I doubt there are more than a handful of us who weren't repeatedly told we were suffering from anxiety. They just don't know any better and that's why we're here.

91bpm to at least 124bpm does fit the bill, especially considering you started from a sitting position. I suspect your supine heart rate is between 60 and 70, which certainly meets the criteria for POTS, but only a qualified doctor can make the diagnosis.

If you can afford 60 or 70 dollars, I highly recommended getting a heart rate monitor watch with wireless chest strap, so you can see your heart rates live, realtime, and see the trends as they occur. If nothing else, it will help you to identify what makes it better and what makes it worse. Perhaps you have a friend who has one that you can borrow.

For now, listen to your body. When it tells you things are getting fuzzy, stop and drop, but no need to roll.

Thankfully I don't tend to black out, but I take my time getting up. One night I woke up and had to go to the bathroom. I forgot to take my time. I got up and walked down the hall. By the time I got to the bathroom I caught my face in the mirror and it was white and I felt weird so I sat down just in case. Yes I was actually looking into getting a heart rate monitor. Do you or anyone else have any good brands to look at? I have seen some listed on amazon. I don't want to get one that is crappy and gives poor reading.

Sometimes when I am laying down it goes faster (than it was when I was sitting) for a little while before it slows. I am not sure what it is when I am completely flat because oddly if I lift my arm to take my pulse it speeds up. So being completely flat would be a great way to see.

[Simmy]

Mine is a cheap Polar I got about two years ago and it still works great. Many others like Polar too, just make sure it comes with a chest strap, not the "place fingers here" type.

It is odd that your heart rate goes up going from sitting to lying down, especially since you said walking is easier than standing, and that, combined with your pale face when standing leads me to think you might have a blood pooling issue. Measuring your heart rate with the watch will definitely give you more accurate numbers to go by. When you lift your arm above your head, your heart needs to pump faster to get the blood up.

Good luck, fellow dude.

[atomic811]

Mine is a cheap Polar I got about two years ago and it still works great. Many others like Polar too, just make sure it comes with a chest strap, not the "place fingers here" type.

It is odd that your heart rate goes up going from sitting to lying down, especially since you said walking is easier than standing, and that, combined with your pale face when standing leads me to think you might have a blood pooling issue. Measuring your heart rate with the watch will definitely give you more accurate numbers to go by. When you lift your arm above your head, your heart needs to pump faster to get the blood up.

Good luck, fellow dude.

Thanks I will look into that kind. Walking is easier than standing only because when I stand still I can feel my issues more. Walking my heart rate stays very high. However you are right when I stand in the shower, or just stand in general my feet turn purple. I showed one doctor, to ease my mind he sent me to have a PAD test (Peripheral Artery Disease) it came back normal. Also my hands turn purple at my sides, have since I was a teen (I am 34 now) I was told that was rayners phenomenon.

I also noticed, that when I feel full my heart races. So I eat light because otherwise it races for an hour or so.

When I lay down it usually goes down..just sometimes I notice for a min or so it goes a bit higher, nothing to dramatic.

[Simmy]

The slight rise when you first lie down might simply be due to you exerting yourself changing positions and with us, every little thing we do raises heart rate slightly.

If indeed you have blood pooling issues it makes perfect sense why you're able to walk, but not stand - something unique to us. It's because while you're walking the muscles in your legs are working and therefore squeezing your blood vessels which helps to force the blood back up. When you stand it all falls down. I've watched my heart rate go from 130 walking on my treadmill to 150+ seconds after stopping and just standing in place. And yes, eating many small meals is much better than a large one.

[atomic811]

The slight rise when you first lie down might simply be due to you exerting yourself changing positions and with us, every little thing we do raises heart rate slightly.

If indeed you have blood pooling issues it makes perfect sense why you're able to walk, but not stand - something unique to us. It's because while you're walking the muscles in your legs are working and therefore squeezing your blood vessels which helps to force the blood back up. When you stand it all falls down. I've watched my heart rate go from 130 walking on my treadmill to 150+ seconds after stopping and just standing in place. And yes, eating many small meals is much better than a large one.

Thank You Simmy good to know

[Christy_D]

When my son had his Tilt Table Test, he was not given anything. He stopped taking his meds several days before, and they did not give him nitroglycerin(sp?). I don't know the difference of why some people are given it and some are not or whether or not some doctors prefer to use it during testing. So not all Tilt Table Tests are done with drugs involved. That might be a question to ask when scheduling the test?

[atomic811]

When my son had his Tilt Table Test, he was not given anything. He stopped taking his meds several days before, and they did not give him nitroglycerin(sp?). I don't know the difference of why some people are given it and some are not or whether or not some doctors prefer to use it during testing. So not all Tilt Table Tests are done with drugs involved. That might be a question to ask when scheduling the test?

OK good, because I can not describe the anxiety stuff like that causes me. I fear that I would not give accurate results that hyped up. I never use to feel nervous just seeing doctors (just had the needle/blood issue), but now I do because after all the ones I have seen, with some yelling at me and others telling me I am basically crazy I feel worried before I even meet a new one now. It is like I am preparing to be attacked. Of course not all my doctors were like that. The one I admire the most just told me he didn't know. I admired his honesty.

[Simmy]

You actually don't need a TTT to be officially diagnosed, but it certainly helps to be certain, and Christy is right, you can take one without drugs.

I had my one and only TTT after I suspected I had POTS and convinced an unknowledgeable endocrinologist to "allow" me to take the test to prove my theory. I failed the test. I only went from 65 to 90. I was having a "good day". Once I found my PotsDoc/cardiologist and showed him my video and how my heart rate rises when I stop walking, the diagnosis was obvious to him and then began the meds... all the meds... yuck.

If you do go in for a TTT make sure you are lying flat and relaxed for the FULL 15 minutes before they take your baseline and begin to raise you. That is crucial and was screwed up on my test. I was down for only four minutes and that likely also skewed the results.

[dakota]

Hi Brian,

I just wanted to welcome you here. It seems to me that you have come to the right place. Your symptoms are very familiar to everyone here.

You mentioned that you had problems with showers. My daughter is very heat sensitive, has a lot of pooling in her feet, and of course, the obvious problem with standing. We have found that a shower chair really comes in handy.

As for the tilt table test, my daughter had an IV put in before the test (needles don't bother her). At first they did the test without anything, and her heart rate increased from 75 to 152. They they tilted her back down and wanted to inject something, I'm not exactly sure what, as they had me out of the room. She told them no! They still diagnosed her with POTS, so I really don't think it's necessary to stick you with needles to get a diagnosis. Maybe you could ask ahead of time if they could do it without so that you wouldn't have anxiety about the needle to complicate things. (And by the way, I'm the same way about needles -- that's one thing that does get me to faint.)

I very much hope that you can find a doctor who will listen to you. You have so many of the symptoms of POTS, I just hope you can find a doctor who is familiar with dysautonomia.

Best of luck to you!

[atomic811]

You actually don't need a TTT to be officially diagnosed, but it certainly helps to be certain, and Christy is right, you can take one without drugs.

I had my one and only TTT after I suspected I had POTS and convinced an unknowledgeable endocrinologist to "allow" me to take the test to prove my theory. I failed the test. I only went from 65 to 90. I was having a "good day". Once I found my PotsDoc/cardiologist and showed him my video and how my heart rate rises when I stop walking, the diagnosis was obvious to him and then began the meds... all the meds... yuck.

If you do go in for a TTT make sure you are lying flat and relaxed for the FULL 15 minutes before they take your baseline and begin to raise you. That is crucial and was screwed up on my test. I was down for only four minutes and that likely also skewed the results.

OK I will make sure. Unfortunately I feel I am not going to be able to really travel around since it is summer if that makes since. Recently I have been pretty bad off. (being that I will have to take myself). I was feeling better for awhile in the winter here (not really as flu like feeling). I have been looking at some docs that specialize in POTS and the closest one is 150 miles in NYC and some in NJ and one in VT. I live in Albany, NY. I am actually surprised for the capital of NY that I have yet to find anyone who has heard of POTS or doesn't confuse it with orthostatic hypotension.

[atomic811]

Hi Brian,

I just wanted to welcome you here. It seems to me that you have come to the right place. Your symptoms are very familiar to everyone here.

You mentioned that you had problems with showers. My daughter is very heat sensitive, has a lot of pooling in her feet, and of course, the obvious problem with standing. We have found that a shower chair really comes in handy.

As for the tilt table test, my daughter had an IV put in before the test (needles don't bother her). At first they did the test without anything, and her heart rate increased from 75 to 152. They they tilted her back down and wanted to inject something, I'm not exactly sure what, as they had me out of the room. She told them no! They still diagnosed her with POTS, so I really don't think it's necessary to stick you with needles to get a diagnosis. Maybe you could ask ahead of time if they could do it without so that you wouldn't have anxiety about the needle to complicate things. (And by the way, I'm the same way about needles -- that's one thing that does get me to faint.)

I very much hope that you can find a doctor who will listen to you. You have so many of the symptoms of POTS, I just hope you can find a doctor who is familiar with dysautonomia.

Best of luck to you!

Thank you Dakota. That is what gets me to faint as well lol. After I have fainted from it in the past they always think minutes later I should be fine, but it wipes me out for a long time. No idea why, so over the years I have become very phobic of it. Maybe once I know what is wrong with me that is a separate issue I can work on hehe.

[HopeSprings]

Brian, I just watched your benzo withdrawal videos. OMG, been there, done that and I can related to everything you went through, ESPECIALLY the stupid Dr's who know nothing about it and dispense bad information and sometimes very DANGEROUS advice. I was on a "low dose" of Klonopin for only 6 months when I started having some weird symptoms, realized it was the medication and decided to get off. I was told that I was on such a low dose, I could just stop taking it... so I did. BIG MISTAKE (as you know). This was back in 1997 -- I was 24 -- went through benzo ****-- by 2001 I was STILL in protracted withdrawal. AND YES Protracted Withdrawal Syndrome is real, it is documented and you're right, most Doctors are clueless about it. I ended up reinstating, figuring if I could stabilize and do a slow taper from there I might be able to get out of the mess I was in. That was a complete failure and I had to go through it all over again a few months later. Fast forward to 2010 -- I am still not right from that initial cold turkey. I have had disabling symptoms all this time and wonder if this recent POTS diagnosis is a result of autonomic nervous system damage either from the benzos, the cold turkey or from time spent on Paxil (which also had a horrendous withdrawal). I have a few other theories about the cause of the POTS -- (a neck injury from a chiropractor being one), but the benzo question has always lingered because it was from that point on that I never felt like myself again.

Anyway, I just wanted to ask you if you remember any of this -rapid heartrate while standing stuff- BEFORE the Xanax.

[MightyMouse]

It may be worth the 150 mile trip to NYC to get to a doctor who understands autonomic disorders. I got my diagnosis formally confirmed at Columbia Presbyterian more than 13 years ago, before there were any specialists in the Philadelphia metro area who had a clue. I'd been sick for years and years, probably since birth as they now believe my condition is genetic, but I didn't get a diagnosis until age 32.

Also, for years before that, I'd just given up on looking for help, suffered alone, because I would have committed a crime if one more doctor told me it was either stress or anxiety.

Just my two cents to help you either confirm or rule out autonomic problems, and head you in the path of interventions that might help you have a better quality of life.

Nina

[atomic811]

Brian, I just watched your benzo withdrawal videos. OMG, been there, done that and I can related to everything you went through, ESPECIALLY the stupid Dr's who know nothing about it and dispense bad information and sometimes very DANGEROUS advice. I was on a "low dose" of Klonopin for only 6 months when I started having some weird symptoms, realized it was the medication and decided to get off. I was told that I was on such a low dose, I could just stop taking it... so I did. BIG MISTAKE (as you know). This was back in 1997 -- I was 24 -- went through benzo ****-- by 2001 I was STILL in protracted withdrawal. AND YES Protracted Withdrawal Syndrome is real, it is documented and you're right, most Doctors are clueless about it. I ended up reinstating, figuring if I could stabilize and do a slow taper from there I might be able to get out of the mess I was in. That was a complete failure and I had to go through it all over again a few months later. Fast forward to 2010 -- I am still not right from that initial cold turkey. I have had disabling symptoms all this time and wonder if this recent POTS diagnosis is a result of autonomic nervous system damage either from the benzos, the cold turkey or from time spent on Paxil (which also had a horrendous withdrawal). I have a few other theories about the cause of the POTS -- (a neck injury from a chiropractor being one), but the benzo question has always lingered because it was from that point on that I never felt like myself again.

Anyway, I just wanted to ask you if you remember any of this -rapid heartrate while standing stuff- BEFORE the Xanax.

I do remember some events, but nothing like now. I too suspect the xanax or I wonder if it just set something off worse that was already there before, I guess I will never really know. Before the benzo I was bad in lines at stores and bad in heat, now though in the past 16 months it really is off the charts. I don't even bring up the horrific withdrawal to doctors anymore because as I am sure you know they don't believe in it.

[atomic811]

It may be worth the 150 mile trip to NYC to get to a doctor who understands autonomic disorders. I got my diagnosis formally confirmed at Columbia Presbyterian more than 13 years ago, before there were any specialists in the Philadelphia metro area who had a clue. I'd been sick for years and years, probably since birth as they now believe my condition is genetic, but I didn't get a diagnosis until age 32.

Also, for years before that, I'd just given up on looking for help, suffered alone, because I would have committed a crime if one more doctor told me it was either stress or anxiety.

Just my two cents to help you either confirm or rule out autonomic problems, and head you in the path of interventions that might help you have a better quality of life.

Nina

Hey MightyMouse, I agree with you. My only issue is how I will do it. There is no one to drive me, my parents won't help or even talk about it now. So my mom calls me once a week. I just talk about the news and shows on tv. My father (they are still married) never was very involved in my life. No more friends. The person I live with has no license. I really got myself into a pickle. I am sure I can get myself there, but I guess my concern is I will get ill and be stuck till my body allows me to function properly to safely get back home. On a side note it is scary going through all this alone, though I assume I am not the only one who has.

[dawson20]

My tilt table did not involve any meds at all - it was just continuous monitoring while upright - that said it may be because my reaction was so violent just to being upright (within 4 minutes my BP was undetectable and my heartrated was 170+), that there was no need to use any meds to 'trigger' a reaction of any sort?

I also had the same issue with being able to keep moving, but as soon as I stood still my BP tanked and my heart rate shot through the roof.... My cardio also explained it was like a blood pooling issue - your veins in your legs operate on a pressure system, the smooth muscles around them are stimulated by movement, and its that movement that contracts the veins and sends the blood to the top half of your body - when there is no movement, the blood can end up pooling (my feet would actually turn purple if I stood still).

At least this was the cliffs notes version the cardio that did my tilt table gave me.

It sounds like you really need a tilt table... it will be hard solid 'proof' that your doctors cannot chalk up to anxiety (in the eraly days I had a few docs play that card - It's so frustrating to know something is wrong and at the same time wonder if their right and youre really 'fine' and just have to get over it).

As far as tests go it is not that invasive - there is an IV involved, but at this point, if you really want to make some headway on determining what is going on and how to treat it, you may need to psych yourself up and go through with it. Once I had my tilt table EVERYTHING changed - suddenly there was a cardiologist saying "something is very very wrong" and everyone else just had to agree... no more 'your stressed' speculation. it was a major turning point for me.

It didnt diagnose anything but it got the attention of the right doctors and got me on a path where I got treatment and the right meds to get my life back until the rest of the cards fell into place for an actual diagnosis.

[Birdlady]

I just had a tilt test done at Cleveland Clinic and they do not use any meds! If you are having one done, tell them explicitly that you don't want the meds. When I made my appointment for Cleveland Clinic, I was told if my previous TTT used any types of medications, then the test was invalid. Since my doctor gave me nitro (for reasons I'll never understand because I was already tachying), the results were worthless to CC any way!

I now know you are better off skipping the local docs and go to one of the major dysautonomia hospitals in the country. Save yourself the hassle of being given wrong tests, inappropriate drugs or flat out not getting the tests you need!