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Yulunga

Confused after “positive” tilt-table test

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I had 2 TTT and had saline IV with both. Usually they do this to have an access to your circulatory system in case they have to give you meds ( like isoproterenol ) or if there is a life-threatening emergency during the test. It does not affect the outcome of the test. It is normal procedure. --- It is possible that the response you had was due to the medicine being given to you due to you not responding. There are parameters of how you are to react to the isoproterenol in order to diagnose POTS, POTS patients have an exaggerated response to it.  I would listen to your doctor that did the testing and ask for the transcript of your TTT so you can see for yourself what happened. Also - you should have a follow-up appointment scheduled with the doctor that did the TTT - write down all of your questions and ask him at that appointment. -- Best of luck to you!!!

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Hi there! In terms of the tilt, mine was similar - fasting, but then they gave me saline, monitored vitals, etc, eventually tilted me and it was a waiting game. Prior to the tilt multiple doctors thought I likely had POTS becauze my HR consistently spikes upon standing and I have tons of presyncope symptoms, but the tilt was actually helpful in showing that I ultimately have an NCS/VVS response. I was out around 10 minutes. Despite all this, I think a lot of us would agree that the tilt itself can be confusing. I didn't talk to my own doctor until a couple of days after the diagnosis (which was given by the on-site specialty cardiologist) and I had a lot of questions about things I didn't understand. I agree with pistol, write down your Q's and maybe even ask the doc if it's okay to ask more questions on the future if you don't have portal email access. I thought of more questions a week or two after my initial conversation with  the doc and was helpful to know I could reach out to her for clarification. Another thing to consider is that there's tons of overlap between the various forms of dysautonomia, and not everyone fits into the classic POTS box even if they're diagnosed with it. Despite your delayed reaction, you certainly seem to have something going on, and I'm glad to hear your docs are investigating. Hoping you find what you're looking for!

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Neither of my TTT had an IV or any medications. I just couldn't take my meds for some time before my tilt table. They hooked BP cuffs on both arms and the second one did a cuff on my finger. Had me in a quiet dim room and had me tell them when I had symptoms and what they were. Honestly the IV may have delayed your response and the doctor knew it would so he considered that in your test. IV solutions have been used for treatment in some people. I would talk to your doctor and see his reasoning if it bothers you. I vaguely recall reading something about delayed response POTS as well. 

Good luck and hope you get your answers. 

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There is no positive or negative, no win or fail on the TTT. It's not the POTS Machine. All it does is show orthostatic intolerance during the test. Your test numbers, along with observations during the test and your medical history will guide the doctor towards a diagnosis. I didn't faint. I didn't even get close. But I still got a diagnosis. Concentrate now on a plan of healing with your doctors. Medicine, nutrition and exercise are going to get you better--it will be some trial and error but you will learn how to take care of yourself and minimize the effect of your symptoms. Be well.

 

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Your dr could explain best but I don't think there is a time limit that your HR would need to go up in the first 10 minutes.  IF that was the case the test would only be 10 minutes!  A normal person would have a very small HR increase on the tilt.  And most people with POTS do not faint at all.  Not sure if you received meds during the test which caused your HR to go up all of a sudden.

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Thank you all for your replies! It feels SO good to know that you're not alone...!!!

I actually didn't get any meds during the TTT, but they were supposed to give me something IF nothing would happen after 20 minutes. So, I collapsed right before that! :D I find it interesting that the procedure for a TTT can vary! 

Yes, you're right, I should jot down all my questions and talk to the cardiologist who evaluated my test. I'll do that! My family practitioner has never heard of POTS when I asked her for a referral, though, and the Dr. I had my follow-up appointment with (my family practitioner was on vacation) had to google what POTS actually is before we could make plans for what to do next. Thus, I'm glad that this forum exists...

The next step, btw, was to check my morning cortisol, and it turned out to be twice as high as it should be at the most (got the results today!). We'll do a 24-hour cortisol collection next. I'm glad that it's finally progressing...

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29 minutes ago, Yulunga said:

Thank you all for your replies! It feels SO good to know that you're not alone...!!!

I actually didn't get any meds during the TTT, but they were supposed to give me something IF nothing would happen after 20 minutes. So, I collapsed right before that! :D I find it interesting that the procedure for a TTT can vary! 

Yes, you're right, I should jot down all my questions and talk to the cardiologist who evaluated my test. I'll do that! My family practitioner has never heard of POTS when I asked her for a referral, though, and the Dr. I had my follow-up appointment with (my family practitioner was on vacation) had to google what POTS actually is before we could make plans for what to do next. Thus, I'm glad that this forum exists...

The next step, btw, was to check my morning cortisol, and it turned out to be twice as high as it should be at the most (got the results today!). We'll do a 24-hour cortisol collection next. I'm glad that it's finally progressing...

I had a cortisol test done too. Mine was normal though. Maybe you got really lucky and stumbled on your underlying cause. Hope your doctor's continue on this trend of looking things up to help you. I have met doctors that wouldn't. 

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17 minutes ago, StayAtHomeMom said:

I had a cortisol test done too. Mine was normal though. Maybe you got really lucky and stumbled on your underlying cause. Hope your doctor's continue on this trend of looking things up to help you. I have met doctors that wouldn't. 

Yes, I'm hoping that there is another, rather "harmless" underlying cause for my symptoms. But I almost believe that the results just reflect the stress I had the night before they drew my blood--I wake up almost every night with a racing heart and dizziness that can sometimes develop into a panic attack... But who knows? 

I'm sorry that you've made the experience that your doctor, the person you rely on, refused to help you when you felt helpless! Having this condition is already creepy enough...! So far I'm lucky that I've met only supportive physicians (except for those neurologists, otolaryngologists, cardiologists... before the TTT who said that I am healthy because the results are good! ;) )

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24 minutes ago, Yulunga said:

Yes, I'm hoping that there is another, rather "harmless" underlying cause for my symptoms. But I almost believe that the results just reflect the stress I had the night before they drew my blood--I wake up almost every night with a racing heart and dizziness that can sometimes develop into a panic attack... But who knows? 

I'm sorry that you've made the experience that your doctor, the person you rely on, refused to help you when you felt helpless! Having this condition is already creepy enough...! So far I'm lucky that I've met only supportive physicians (except for those neurologists, otolaryngologists, cardiologists... before the TTT who said that I am healthy because the results are good! ;) )

I am not sure exactly what cortisol test was but it was to check for Cushing's or Addison's. I can't remember which. I know I had to have a few blood draws and the they injected me with something in between. It has been a while since I had the test, that is why my memory is lacking. 

POTS always has an underlying cause. It is not a disease but rather a cluster of symptoms. I still have not found mine but I have a high suspicion it is autoimmune since that runs so high in my family. Finding the underlying cause can be hard but in theory if you take care of the underlying cause then your POTS symptoms can resolve. Key word: in theory. 

Have your doctor's done a urine catacholmine test yet? If not I would ask for it. It can determine if you have HyperPOTS. 

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43 minutes ago, StayAtHomeMom said:

POTS always has an underlying cause. It is not a disease but rather a cluster of symptoms. I still have not found mine but I have a high suspicion it is autoimmune since that runs so high in my family. Finding the underlying cause can be hard but in theory if you take care of the underlying cause then your POTS symptoms can resolve. Key word: in theory. 

Have your doctor's done a urine catacholmine test yet? If not I would ask for it. It can determine if you have HyperPOTS. 

Actually, I asked the Dr if he could test me for hyperadrenergic POTS, and he ordered the blood test. When I asked him if it would be the catecholamine test he denied and said he would like to do this (cortisol) test first. But now he wats to do the 24-hour urine collection, and yes, I will ask him to check my catecholamines as well.... :) 

I didn't know that there are various causes for POTS and that they can be individually diagnosed--thus, I thought a treatment is based on dealing with the symptoms instead of attacking the cause! That sounds great! Means there's reason for hope! I hope you'll find another cause than autoimmune so that you can attack the issue at the roots! Good luck to you!

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@Yulunga - I am happy that they are taking your symptoms serious. I have found that it is not even all that necessary to have an experienced autonomic specialist as long as you have a physician who believes you and tries to help you. I fired 4 cardiologists who ignored and even dismissed me until I found the one who agreed I had POTS but did not know how to treat it. That's when I saw a specialist who diagnosed me. The 2 years before diagnosis I had only one person who knew what I was going through and helped me as best as he could - that was my PCP. Without him I don't know where I would be … About underlying causes for POTS: yes, sometimes finding and treating the cause can help fix POTS, but not always. For example: if you look for a cause of joint pain then you can determine if it is RA or OA - but you still have to treat the symptoms and they do not go away. I have hyperPOTS and it runs in my family, so it most likely genetic. But that does nothing to fix it. If it is auto-immune or from MCAS or from neuropathy - then you know WHY you have it and treating those conditions can help but not necessarily. In your case I hope the elevated cortisol level will lead to an effective treatment and that you will soon feel better. Hang in there - you are doing a good job!

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YU  I too just had the TTT and HAD the EXACT same reaction as you did....at approx 19 minutes into the test I became very dizzy, my face went numb and tingly and my hands and feet too....my blood pressure started dropping dramatically....but my heart rate did not go up.....and at home my heart rate always jumps up to 

120 when I get up from laying down.....more than a 60 point increase...but at the TTT  it only went up to 85 the whole time...even when I was about to pass out.....strange....the put the table down right away when i started feeling like I would pass out....so maybe a few more minutes and I would have gone completely out and my heart rate would have increased...??? who knows......I don't think these tests are very good because they are in a controlled environment....I was strapped tightly to the table.....at home I have to bear all the weight of my body myself....it is very different.....anyway I did have the orthostatic hypotension....so we will see what the CARDIO doctor says about it.......if they try to tell me it is only PANIC DISORDER.....I will LOSE it.......because that is not what it is......it just started out of the blue when my thyroid had gotten very low.....and now I am doing better but not cured...that my thryroid is getting better on higher meds.....let me know what you find out......and I will do the same

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On ‎9‎/‎8‎/‎2018 at 8:14 PM, WinterSown said:

There is no positive or negative, no win or fail on the TTT. It's not the POTS Machine. All it does is show orthostatic intolerance during the test. Your test numbers, along with observations during the test and your medical history will guide the doctor towards a diagnosis. I didn't faint. I didn't even get close. But I still got a diagnosis. Concentrate now on a plan of healing with your doctors. Medicine, nutrition and exercise are going to get you better--it will be some trial and error but you will learn how to take care of yourself and minimize the effect of your symptoms. Be well.

 

Winter, you have hyper-pots right? Can someone with hyper-pots pass out on a TTT. I'm really going to start looking for the local university to help me out. I just get so darn burned out from my part time job that I don't have the energy to do anything towards finding a specialist on my days off. Maybe if I quit working again I can use the extra energy to get some answers. 

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8 hours ago, Pistol said:

@Yulunga - I am happy that they are taking your symptoms serious. I have found that it is not even all that necessary to have an experienced autonomic specialist as long as you have a physician who believes you and tries to help you. I fired 4 cardiologists who ignored and even dismissed me until I found the one who agreed I had POTS but did not know how to treat it. That's when I saw a specialist who diagnosed me. The 2 years before diagnosis I had only one person who knew what I was going through and helped me as best as he could - that was my PCP. Without him I don't know where I would be … About underlying causes for POTS: yes, sometimes finding and treating the cause can help fix POTS, but not always. For example: if you look for a cause of joint pain then you can determine if it is RA or OA - but you still have to treat the symptoms and they do not go away. I have hyperPOTS and it runs in my family, so it most likely genetic. But that does nothing to fix it. If it is auto-immune or from MCAS or from neuropathy - then you know WHY you have it and treating those conditions can help but not necessarily. In your case I hope the elevated cortisol level will lead to an effective treatment and that you will soon feel better. Hang in there - you are doing a good job!

Yeah, you have to figure out what the cause of the POTS is. The number one cause of autonomic dysfunction is Diabetes. I have diabetes and this could be the cause. I have been having normal A1C levels lately, but I think that test is wrong. Yesterday I ate some Doritos and my blood sugar went up to 200 and then 45 minutes later it was 69 and I was going hypo. This always happens to me whenever I eat just carbs and then go to work, or do light moving around. I was not on insulin since the night before and it had already cleared my system. It is more of a reactive hypoglycemia. That is why I usually never eat before work unless it is just a piece of beef jerky. If I do eat carbs before work, I keep eating carbs every 2 hours to prevent the hypo. I have a new theory that brittle hard to control diabetes is from autonomic dysfunction. Any how, if it is not diabetes, then it has to be from another condition that can cause nerve damage, or pooling of blood in the legs, hypovolemia, so many different causes. 

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1 hour ago, blizzard2014 said:

Winter, you have hyper-pots right? Can someone with hyper-pots pass out on a TTT. I'm really going to start looking for the local university to help me out. I just get so darn burned out from my part time job that I don't have the energy to do anything towards finding a specialist on my days off. Maybe if I quit working again I can use the extra energy to get some answers. 

I was not diagnosed with hyper-Pots. I have OI, VVS, Vertigo, Paraesthesia, Gate imbalance, Dysmotility, a PEH, no sleep cycle or appetite,  and sometimes my symptoms swing over into POTS but my numbers are generally  low to the point where I get Drop Attacks which is fainting without losing consciousness. But no Hyper Pots. Gosh, I hope not that too.

Everybody reacts differently. We all so very different in our sensations as well as our physical reactions. Also, keep on mind that none of us are stable in our symptoms. They can change from minute to minute. How you are today may not be how you are tomorrow.  Initially, a dysautonomia diagnosis is as difficult to manage as understand, but through trial and error your doctors will help you get better control of your life. It's vital for you to keep in contact with your doctors even to just leave phone messages about how you are reacting to medicine, diet, etc. They need to know your quality of life in order to adjust your meds and treatments. If you are not improving let them know. If they don't react let them know again and again...squeakiest wheel still gets the most oil at the doctor office too. 

 

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