Crazycatlady Posted October 4, 2018 Report Share Posted October 4, 2018 Have a lot of symptoms of POTS/Dysautonomia. I am waiting to get my tilt test scheduled. I don’t get in to see the neurologist until March!!! So I’m kind of freaking out. If i “fail” my pots test (no real changes in blood pressure or HR) I have to get an MRI done here i I am freaking out I won’t feel normal again and I’m going to die (haha... over reactive I’m sure). I think I just feel the worst since it’s my time of the month... ugh any advise ? Any bits of hope? thanks Quote Link to comment Share on other sites More sharing options...
Peter Charlton Posted October 4, 2018 Report Share Posted October 4, 2018 I just had mine done last week after waiting since February 8th! I now have to wait another month at least, to be called in to hear what the doctors have decided upon after seeing the results. Of course I am a little concerned they didn't find anything as it was so comfortable just lying down, its like when I went into ER, walking like I am drunk, slurred speech, by the time I have had a nice rest waiting for hours to be seen, my symptoms have subsided! Nothing horrible happens, the people (at the UCLH) were really nice, they don't torture you, (apart from the bit where you have to hold an ice pack!), or put you in prison if you fail, so just think of it as a nice day out, a new experience, like going to see a play at the theatre you haven't seen before. Quote Link to comment Share on other sites More sharing options...
WinterSown Posted October 4, 2018 Report Share Posted October 4, 2018 Your stress if the product of a pervasive misconception that there is a win or fail to the TTT. It's not that type of test. It's not the POTS machine. All it does is measure levels of syncope and orthostatic intolerance. The doctor and attendants will observe you during the test, they will also consider your medical history. Based on all that you can get an accurate diagnosis. Afterwards it will be trial and error for a bit until your meds and management are adjusted to your symptoms and you have some relief from them, but it does happen. Good luck and don't let stress eat you up. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted October 4, 2018 Report Share Posted October 4, 2018 I had to wait 6 months to start seeing my neurologist. It was well worth it. He is the only specialist for POTS in my state and he knows what is going on. Not just dismissing me like I just have an anxiety problem. He ended up reordering all of my tests, including TTT. Then had me do a brain MRI anyway to rule out MS because of my symptoms. Sometimes it takes a while to get in to see a good doctor but that good doctor can mean so much for your health. Have you done or had a poor man's tilt table done? I had issues with doctors believing my symptoms were an issue. So I did a poor man's every day for a month to show my doctor. When I showed my PCP she sent me to a second opinion cardiologist. When I showed him he scheduled my TTT and that got me my diagnosis. It took about 3 months to get that done, but I finally have my answer. All I can suggest would be to call every so often about cancelations. Maybe they can get you in sooner. Also sometimes I can get a better date and time than what my doctor's office set up. I remember feeling the doom and gloom before my diagnosis. I got better and I am sure you will too. Quote Link to comment Share on other sites More sharing options...
ShiEksdee Posted October 4, 2018 Report Share Posted October 4, 2018 I waited 11 years for my TTT. Suspected I had some type of Dysautonomia since the beginning after researching my symptoms and begged doctors for the test for all those years. Turns out they think I have NCS and POTS after TTT finally done this year. The wait was horrific and filled with doctors who told me I was crazy or making it up (I live in an area with terrible doctors and health care in general). I haven't found any relief for my symptoms yet but at least I have some answers and can start trying to. I go in for a 2-day EEG hospital stay next week. It's tough, but we'll make it! Quote Link to comment Share on other sites More sharing options...
Pistol Posted October 5, 2018 Report Share Posted October 5, 2018 @ShiEksdee - I also had a stay in the EMU ( Epilepsy monitoring unit). It's pretty boring and you have all of this goop in your hair and everything is on camera. But on the 3rd day I passed out and the heart monitor showed tachycardia but the EEG showed my brain completely flat lined!!! This is due to my syncope being caused by sympathetic over compensation, the ANS constricts all blood vessels and there is no circulation in the brain. This test confirmed - along with the elevated norepinephrine levels - hyperadrenergic POTS. And NCS - just like you have. I hope your test will show something - bring some good books and lots of snacks!!!! Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted October 5, 2018 Report Share Posted October 5, 2018 Whereabouts are you Crazycatlady? Standards of care can vary widely depending on where you are, and my experience (in Scotland, UK) was that unfortunately my first TTT was reported as "normal" by the cardiologist (with an upright HR of 154 and BP 170/110!) and I was dismissed without any follow up appointment or treatment offered. When I asked for the actual data from my test so that I could take it to somebody who knew how to interpret it correctly, the hospital told me they no longer had it as they don't keep it after it has been reported. Being a doctor myself who previously worked in hospitals I found this highly suspect as there are medicolegal implications to disposing of a patient's investigation results, however there was nothing I could do, and even if it had genuinely been normal, in my opinion a previously fit and healthy person who cannot stand for passing out warrants treatment regardless of what a test shows. I did end up finally getting a referral to Professor Newton in Newcastle who is knowledgeable on POTS and diagnosed me via a stand test. Still no treatment has been provided, and I recently went to UCLH in London where I am waiting for additional testing. Ironically the "loss" of my original TTT data has worked in my favour as they are more likely to be able to secure funding from my health board for a repeat TTT with catecholamines drawn supine and upright. My advice therefore would be to ask for copies of all results and data from the TTT for your own records so that you can examine it yourself and take it to future consultations with other specialists if needed. Best wishes, B xxx Quote Link to comment Share on other sites More sharing options...
GasconAlex Posted October 5, 2018 Report Share Posted October 5, 2018 I still don't have a proper diagnosis after a TTT in May. The test results specify postural orthostatism, with increase in bp and 50+ BPM to 150 BPM. The report wanted a holter and 24hr blood pressure monitoring, this done the cardio did not look at the TTT, and concluded that as the heart rate rises were not instantaneous they could be excluded. They were also dismissive of the blood pressure issues has they maxed at 138. More concerned with hypotension as horizontal night time average was 86/48. There was a few other bits of rubbish in the report, like pressure drop when vertical but not reported by patient (never asked me tho') and more arrhythmia than I'd like. So now my gp doesn't want to treat the tachycardia, as this is likely to reduce the bp. The cardio doesn't care as within normal for heart stuff, and the neurologist is happy to leave it as dysautonomia with postural orthostatism (tachycardia). Doesn't help me much! So although it is good to have the TTT (and get the copy report as it is yours) it might well not answer all your problems, and the treatments at mostly symptomatic anyway, so don't stress the test. Depending where you are it might take even longer to get tested than see the neurologist, I hope not - but the delays are often there. Quote Link to comment Share on other sites More sharing options...
ShiEksdee Posted October 6, 2018 Report Share Posted October 6, 2018 On 10/5/2018 at 5:18 AM, Pistol said: @ShiEksdee - I also had a stay in the EMU ( Epilepsy monitoring unit). It's pretty boring and you have all of this goop in your hair and everything is on camera. But on the 3rd day I passed out and the heart monitor showed tachycardia but the EEG showed my brain completely flat lined!!! This is due to my syncope being caused by sympathetic over compensation, the ANS constricts all blood vessels and there is no circulation in the brain. This test confirmed - along with the elevated norepinephrine levels - hyperadrenergic POTS. And NCS - just like you have. I hope your test will show something - bring some good books and lots of snacks!!!! Did they let you have a phone when you did yours? I'm freaked out from the thought of not being able to talk to my friends for some days. - .- I am a very social type. But they said I can't even have visitors and that they're going to try to stress me out (sleep deprive, etc.). Basically since I already have my diagnoses they're trying to see if stress plays a factor for mine (at least this is what they told me they're doing it for). I mostly only have near-faints in my everyday life because when I feel it worsen I take measures to keep the faint from happening. I hope they can tell things from just dizziness and not make me faint again like on the TTT..........I'm afraid to ever have a TTT again because my experience on it. It's like you know it's coming but they won't let you sit or lie down and it's just the impending feeling that you're going to faint with nothing you can do (lack of control is a fear of mine) Quote Link to comment Share on other sites More sharing options...
Pistol Posted October 6, 2018 Report Share Posted October 6, 2018 Yep - I agree about the TTT, I think it is one of the most sadistic tests they could come up with! And no - I was not allowed a cell phone but I think they might let you keep an Ipad or something like that. I am not sure if they would but I would ask. It will be quite boring! At least they let you watch TV. Hope all will go OK for you - keep me posted! Quote Link to comment Share on other sites More sharing options...
Crazycatlady Posted October 13, 2018 Author Report Share Posted October 13, 2018 Wow ! Didn’t realize how supportive this community was. Just found it on Google. thank you all for sharing your stories. They did help glad to know I’m not alone. we can all get through this day by day ! Quote Link to comment Share on other sites More sharing options...
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