Anonymous #1
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So they are making me do a table tilt test. I don't think I have POTS. I get light headed when I stand occasionally but it's not really severe. I just have chronic fevers, digestive problems and other symptoms associated with autonomic dysfunction.

Will they still help me if I don't have POTS, is it worth getting the test and can I ask not to have it if it's not worth it ?
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Anonymous #1
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(Original post by Anonymous)
So they are making me do a table tilt test. I don't think I have POTS. I get light headed when I stand occasionally but it's not really severe. I just have chronic fevers, digestive problems and other symptoms associated with autonomic dysfunction.

Will they still help me if I don't have POTS, is it worth getting the test and can I ask not to have it if it's not worth it ?
I just feel a bit bad and don't want to waste their time. Especially if people have more severe problems
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Pathway
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Well if you do have POTS they can help, and if you don't have POTS they'll just investigate more to find out what's going on.
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-Eirlys-
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(Original post by Anonymous)
So they are making me do a table tilt test. I don't think I have POTS. I get light headed when I stand occasionally but it's not really severe. I just have chronic fevers, digestive problems and other symptoms associated with autonomic dysfunction.

Will they still help me if I don't have POTS, is it worth getting the test and can I ask not to have it if it's not worth it ?
When I had a TTT, I had never heard of POTS and had no real clue why they were doing it from what I remember. I was diagnosed immediately afterwards as I met the criteria, so I'd say it's worth doing just incase you do have it and not know. Many people are usually fighting for a diagnosis, so I was incredibly grateful and lucky I got one and got diagnosed quickly. I now have medication and it's changed my life, so I would say definitely get a TTT, whether you think it's relevant or not. You never know! The test is simple and not stressful or bad at all imo, unless you're prone to fainting.

Also try not to downplay your experiences/symptoms because people have it worse than you. You're experiencing symptoms so that's enough to warrant an investigation! Also only 30% of POTS patients pass out, the rest of us never faint with it.
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Anonymous #1
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(Original post by -Eirlys-)
When I had a TTT, I had never heard of POTS and had no real clue why they were doing it from what I remember. I was diagnosed immediately afterwards as I met the criteria, so I'd say it's worth doing just incase you do have it and not know. Many people are usually fighting for a diagnosis, so I was incredibly grateful and lucky I got one and got diagnosed quickly. I now have medication and it's changed my life, so I would say definitely get a TTT, whether you think it's relevant or not. You never know! The test is simple and not stressful or bad at all imo, unless you're prone to fainting.

Also try not to downplay your experiences/symptoms because people have it worse than you. You're experiencing symptoms so that's enough to warrant an investigation! Also only 30% of POTS patients pass out, the rest of us never faint with it.
thanks ! this is really reassuring.
I hear a lot of storied about people who pass out all the time, have to fight the doctors to get tested and then don't pass out when they have it so have to keep fighting. I don't want to take it away from them. I usually only have problems when I have problems with my electrolytes so it's usually just Torsades de pointes.

I might take a look at the criteria.
can't thank you enough
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(Original post by Anonymous)
thanks ! this is really reassuring.
I hear a lot of storied about people who pass out all the time, have to fight the doctors to get tested and then don't pass out when they have it so have to keep fighting. I don't want to take it away from them. I usually only have problems when I have problems with my electrolytes so it's usually just Torsades de pointes.

I might take a look at the criteria.
can't thank you enough
As -Eirlys- said, not everyone does pass out, and just because you don't doesn't mean POTS can't be causing your difficulties, they also test for other things during the TTT as well. They wouldn't suggest a test if it was clinically unnecessary. I've had a TTT before and I have POTS, and I do pass out, but my POTS doesn't invalidate those who don't pass out, etc.

You deserve to figure out what's going on for you. Let the doctors do what needs to be done. Take care.
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Anonymous #2
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(Original post by Anonymous)
thanks ! this is really reassuring.
I hear a lot of storied about people who pass out all the time, have to fight the doctors to get tested and then don't pass out when they have it so have to keep fighting. I don't want to take it away from them. I usually only have problems when I have problems with my electrolytes so it's usually just Torsades de pointes.

I might take a look at the criteria.
can't thank you enough
I don't think you should be underestimating the seriousness of Torsades!
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(Original post by Anonymous)
thanks ! this is really reassuring.
I hear a lot of storied about people who pass out all the time, have to fight the doctors to get tested and then don't pass out when they have it so have to keep fighting. I don't want to take it away from them. I usually only have problems when I have problems with my electrolytes so it's usually just Torsades de pointes.

I might take a look at the criteria.
can't thank you enough
You're not taking away a TTT from someone else at all. In fact, I don't think that many people get one that often anyway. When I had mine, it was kind of hidden away in an old worn down part of the hospital. I felt like they practically had to remove cobwebs. :lol:
Even if it could somehow 'take away' from someone else, if the doctor feels it's necessary, then it's necessary. You never know what they may find like in my case. If you're already getting heart troubles, then it's simply one more test to see how your body reacts. Think of it like a blood test or a blood pressure reading. Having one doesn't take away a test for someone else! If you do get diagnosed with POTS, there's treatment available too that may help you feel better.
(Original post by Pathway)
my POTS doesn't invalidate those who don't pass out
Exactly, I'm glad you said this. For a long time after my dx, I felt like I couldn't complain and my doctor even regularly likes to remind me that he sees people worse than me. I felt like I was the minority who never fainted, so it was reassuring and surprising to find out that only 30% of POTS patients pass out regularly. That helped me to rethink my condition and how I viewed it. It must be enough of a problem to warrant daily medication and yearly/6 monthly check ups. :dontknow:
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(Original post by -Eirlys-)
Exactly, I'm glad you said this. For a long time after my dx, I felt like I couldn't complain and my doctor even regularly likes to remind me that he sees people worse than me. I felt like I was the minority who never fainted, so it was reassuring and surprising to find out that only 30% of POTS patients pass out regularly. That helped me to rethink my condition and how I viewed it. It must be enough of a problem to warrant daily medication and yearly/6 monthly check ups. :dontknow:
I think some doctors are just trying to comfort you, but it comes across poorly, if that makes sense. Tbf though, I didn't realise it was such a small porportion? :eek:

How are things going with your POTS anyway? I see tertiary care cardiology yearly and and secondary care cardiology every 3 ish months. I too am on daily medication, starting Midodrine soon. It's hard not to invalidate your own experience when more often than not people suffer for ages before diagnosis, so it's easier to just say things are fine when they're not (does that make sense??). I'm glad you're getting help!!
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Anonymous #1
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I think that for me it's a kind of gateway diagnosis. If I can get it, they will help me with the other symptoms. I'm okay with occasionally feeling dizzy. It' just digestive symptoms and some unpleasant but not dangerous ones like malaise and fevers. They are suggestive of autonomic dysfunction but in order for them to rule out eating disorder completely (I don't have one, I'm a teenager who lost weight, they are convinced I'm anorexic despite all of the symptoms) and get some actual treatment, I need to somehow prove that I have POTS even though I probably don't which is scary. I only very occasionally get head rushes and I don't think it affects my life enough to warrant a diagnosis.
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(Original post by Anonymous)
I think that for me it's a kind of gateway diagnosis. If I can get it, they will help me with the other symptoms. I'm okay with occasionally feeling dizzy. It' just digestive symptoms and some unpleasant but not dangerous ones like malaise and fevers. They are suggestive of autonomic dysfunction but in order for them to rule out eating disorder completely (I don't have one, I'm a teenager who lost weight, they are convinced I'm anorexic despite all of the symptoms) and get some actual treatment, I need to somehow prove that I have POTS even though I probably don't which is scary. I only very occasionally get head rushes and I don't think it affects my life enough to warrant a diagnosis.
Well, you can have autonomic dysfunction from an eating disorder, so it won't necessarily rule it out entirely. Work with those involved with your care. I wouldn't try and adjust things either, messing with trying to fix diagnoses to what you "want" will just give more credence that you've got something to hide. If you don't have POTS the treatment won't work anyway.
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Anonymous #1
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(Original post by Pathway)
Well, you can have autonomic dysfunction from an eating disorder, so it won't necessarily rule it out entirely. Work with those involved with your care. I wouldn't try and adjust things either, messing with trying to fix diagnoses to what you "want" will just give more credence that you've got something to hide. If you don't have POTS the treatment won't work anyway.
I don't really know what to do. They keep taking me off medications that work (ondansetron) and putting me on to antidepressants to fix the problems that the other medications fix. Because I can't use them I become more unwell and they keep saying they think it could be an eating disorder. I've seen 4 different psychiatrists and they have all said I don't have one. I'm not afraid of the diagnosis, If I had one it could help treat it and ultimately I would feel better. Sadly all that is happening is they are trying to treat me for one and the treatment isn't working . I just want to feel ok

sorry for the rant. I just feel a bit hopeless at the moment.
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(Original post by Anonymous)
I don't really know what to do. They keep taking me off medications that work (ondansetron) and putting me on to antidepressants to fix the problems that the other medications fix. Because I can't use them I become more unwell and they keep saying they think it could be an eating disorder. I've seen 4 different psychiatrists and they have all said I don't have one. I'm not afraid of the diagnosis, If I had one it could help treat it and ultimately I would feel better. Sadly all that is happening is they are trying to treat me for one and the treatment isn't working . I just want to feel ok

sorry for the rant. I just feel a bit hopeless at the moment.
So keep doing what you're doing, have the TTT, and go from there. Trying to get a false positive will not help you anyway. And if your main issue is GI related, how come they've not referred you on to GI? Have they?

Ondansetron is pretty expensive, what other medications have you tried? Anti sickness wise.
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Anonymous #1
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(Original post by Pathway)
So keep doing what you're doing, have the TTT, and go from there. Trying to get a false positive will not help you anyway. And if your main issue is GI related, how come they've not referred you on to GI? Have they?

Ondansetron is pretty expensive, what other medications have you tried? Anti sickness wise.
The adult GI said that they would just take me off all medications and all nutritional support and If I want to be unwell then I can. The paediatric consultant want happy with this response because I would die so she referred me to a neurogastroenterologist at Southampton. He said that he can't provide tertiary care if I don't live in Southampton and referred me back to the original gastro.

not many other medications work for nausea. We could try some prokinetics because I have delayed gastric emptying. Unfortunately the adult GI isn't prepared to let me have any medications other than antidepressants.
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Pathway
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(Original post by Anonymous)
The adult GI said that they would just take me off all medications and all nutritional support and If I want to be unwell then I can. The paediatric consultant want happy with this response because I would die so she referred me to a neurogastroenterologist at Southampton. He said that he can't provide tertiary care if I don't live in Southampton and referred me back to the original gastro.

not many other medications work for nausea. We could try some prokinetics because I have delayed gastric emptying. Unfortunately the adult GI isn't prepared to let me have any medications other than antidepressants.
What? That's ridiculous - that's literally the point of tertiary care, they're the regional specialist??? :curious: so what's happening now?

There are quite a few actually, cyclizine and prochlorperazine come to mind (I'm on prochlorperazine - I too have delayed gastric emptying). There's a load of other ones as well. Your GP should be able to prescribe some other anti emetics. It's worth a try.
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Anonymous #1
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(Original post by Pathway)
What? That's ridiculous - that's literally the point of tertiary care, they're the regional specialist??? :curious: so what's happening now?

There are quite a few actually, cyclizine and prochlorperazine come to mind (I'm on prochlorperazine - I too have delayed gastric emptying). There's a load of other ones as well. Your GP should be able to prescribe some other anti emetics. It's worth a try.
cyclizine doesn't work for me and the paediatrician took me off the prochlorperazine because she wasn't happy about me being on it. Something to do with side effects. Ondansetron is also works waaaaaaaaay better for me with no side effects at all.

now I wait for 4 months until I'm 18, say my prayers and ascend. At this point I have no clue. However the thing that will likely get rid of me is cardiac arrest from electrolyte imbalances which is apparently painless.
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(Original post by Anonymous)
cyclizine doesn't work for me and the paediatrician took me off the prochlorperazine because she wasn't happy about me being on it. Something to do with side effects. Ondansetron is also works waaaaaaaaay better for me with no side effects at all.

now I wait for 4 months until I'm 18, say my prayers and ascend. At this point I have no clue. However the thing that will likely get rid of me is cardiac arrest from electrolyte imbalances which is apparently painless.
So what has your paediatrician said? Like what's their plan for you? Even if you did have an ED they can't just leave you like this.
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Anonymous #1
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(Original post by Pathway)
So what has your paediatrician said? Like what's their plan for you? Even if you did have an ED they can't just leave you like this.
She will try and keep nagging the GI to support me nutritionally. However, She has warned us that as soon as I turn 18 it is out of her hands. The adult GI has already told us her plan- to pull out my NJ tube and stop medications. So there is a plan. It's just a bad plan
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(Original post by Anonymous)
She will try and keep nagging the GI to support me nutritionally. However, She has warned us that as soon as I turn 18 it is out of her hands. The adult GI has already told us her plan- to pull out my NJ tube and stop medications. So there is a plan. It's just a bad plan
Well, I truly hope she advocates for you, because you deserve support. Take care.
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(Original post by Pathway)
I think some doctors are just trying to comfort you, but it comes across poorly, if that makes sense. Tbf though, I didn't realise it was such a small porportion? :eek:

How are things going with your POTS anyway? I see tertiary care cardiology yearly and and secondary care cardiology every 3 ish months. I too am on daily medication, starting Midodrine soon. It's hard not to invalidate your own experience when more often than not people suffer for ages before diagnosis, so it's easier to just say things are fine when they're not (does that make sense??). I'm glad you're getting help!!
It doesn't make sense though because I usually have a list of problems every time I see my doctor! Then he'll just end the appointment with 'we see people who are worse off than you' and I'm thinking 'um ok, thanks for that?' :lol: I am aware of that but what an invalidating thing to say?
And I'm the one who pointed out that the hospital is so warm, that's why all his patients pass out when they come to his appointment and he was like 'is it?' :dontknow: He didn't realise how warm the hospital was? It makes even me symptomatic, let alone those who pass out with it.

It's still an additional health condition I have to manage daily and may be affected by for the rest of my life. But I have a bad habit of downplaying my symptoms and conditions, I will hide them as much as possible and never ask for help. It's pretty bad because I'm not my own advocate and I don't get the support I need at all. Applying for DSA was a psychological nightmare, because it totally contravened how I view myself. I still don't know if I could even call myself disabled, this only cropped up because the OU considered me disabled. What's your thoughts on this?

It's a lot better now. Tbh, I think they caught it just in time before it became very problematic if that makes sense? I was diagnosed at 19 and although I'd been getting symptoms, everyone kept downplaying me and saying that everyone gets dizzy, everyone loses their sight when they 'stand up too fast'. I still very much ignore my symptoms so if someone ever asks me like 'how does it affect you?', I kind of go blank :lol: But I don't think I could do the job I'm in now if I didn't have medication. I would really struggle. I mean I already do, but I would be so symptomatic, it would be impossible.

I tried midodrine but it just made my blood pressure very high and so I'm on ivabradine twice a day and that's been the miracle drug for me. Though I now have pre-hypertension which we're a bit confused by as I'm not overweight, though I don't exercise. I've never seen a cardiologist, I am under general medicine. They did the TTT and they sent me for heart checks and they're who I see every year.

How is it for you?
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