BeforeTheMorning

I've had a stress echo. Like people have said there is a bed right next to the treadmill, and while you are walking on the treadmill they keep asking how you are doing and you can stop at any time you really need to. I found it hard, they increased the speed and the incline of the machine about every three minutes. I didn't quite manage to get to my target heart rate, because I felt so awful I had to ask them to stop, and afterwards they couldn't get my HR down past about 140! Though they kept my sitting there for ages trying to wait for it to come down. So, yeah it is pretty stressful (well it was for me anyway!), of course I'm not hoping you'll get really sick, but I understand you're wanting it to happen while you are being monitored and hopefully you will really get some answers. Best Wishes, Lyla

Sorry, I don't know about Midodrine. I'm just hoping it works for you and you find some relief from symptoms. Best Wishes, Lyla

I'm glad it went okay. Sending you best wishes for a quick recovery! Lyla

That is so frustrating! I hope you get to speak to a different nurse who will listen sensibly and care about you. I looked up some articles that mention POTS and heat intolerance, I don't know if any of them are what you're looking for, but I will try and post them. http://redlilyfoundation.org/wp-content/uploads/2012/04/orthostatic_intolerance_dr_Rowe.pdf This one from John Hopkins mentions on page 8 under 'Physical Therapy and Exercise' that extreme heat will worsen POTS. http://www.ndrf.org/PDF%20Files/disorders.PDF This one is written by Dr Grubb and Dr Karas. And it mentions POTS and heat during the last paragraph of page 10 and also on page 15 under 'Potential Treatments' it talks about the need to avoid heat. http://www.ndrf.org/PDF%20Files/disorders.PDF And this one lists heat as one of the things to avoid, under 'Drugs to Avoid' I hope some of these help, and hope that you can get it all sorted out. I can't believe that nurse was so dismissive, I wonder how she'd feel about it if she had to live in the heat with POTS!!! Best Wishes, Lyla

Wishing you the best, and I hope everything goes well. Lyla

Well done for going through all the testing and stuff, that can be hard, but it really sounds like in this instance it was well worth it. Wow, you have an exercise regime, a nutritionist, a biofeedback program and your going to try new medications, that is really great! Your going to make lots of people envious of your great doctor!!! I hope that everything will help you a lot and you see a good improvement. Best Wishes, Lyla

Hey, Sorry your appointment didn't go very well. Actually it sounds an awful lot like my first cardiology appointment. I did have a couple more tests (probably because I have a close relative with congenital heart disease and they wanted to check everything out), but then I was told by the consultant that I probably needed to drink more and I was too skinny! I was pretty thin at the time as I'd lost weight due to the digestive issues with POTS but it wasn't really a very helpful appointment! After that doctor, I went through a specialist arrhythmia nurse and another cardiologist who was even worse than the first one. He did order a cardiac monitor and gave me an appointment to go back in 3 months, but I really didn't think I was going to get anywhere with him as he really didn't seem to believe me, so I cancelled the next appointment. So I had a look online to find out about doctors who really know about POTS. The Dinet website has a list of specialists, and so does STARS and POTSUK. (You can also email some of these people for advice) Someone I know had been to a particular hospital and said how great they were, so I chose the POTS specialist at that hospital and asked my GP to refer me there, which he kindly did. Since going there it's been great because most of the people working there, running tests, etc actually know what POTS is, and the consultant I see is really knowledgeable and friendly. Do you think that you could get your GP to refer you to see a cardiologist who specialises in POTS? I didn't know if my GP would actually refer me, but he did and it really was worth it. It's still a long road, but at least now I have my diagnosis and doctors who actually believe and support me. Sorry this has got a bit long! I really hope you can find someone to help you. Best Wishes, Lyla

Hi there, Welcome to the forum. I'm sorry I don't really have an answer to your question, but I'm glad you finally have your diagnosis, and hopefully you will be able to find something to help you now. Best Wishes, Lyla

Hi, Are you going to be seeing a cardiologist that specialises in POTS, because some doctors really don't know anything about it. It might be a good idea to take some information about POTS with you just in case, I think that POTSUK.org has a print out thing you can show your doctor. And if he tries to tell you that all POTS patients faint, don't believe him. I saw someone who thought that all POTS patients fainted and he said that I couldn't have POTS because I didn't faint. Which isn't the case. Make sure you tell your doctor about all your symptoms, it's probably a good idea to write yourself a list of symptoms, and when they occur, and what helps, what makes them worse and so on, just to help yourself remember, like when you are standing, do you feel your heart pounding, are you dizzy, do your feet go purple? etc.... Doing a 'Poor Man's Tilt Test' where you lie still for about 10 minutes and then quickly stand up and stand still for about 10 minutes while your heart rate and blood pressure are monitored can really help to show POTS. If this doctor thinks you could have POTS and he is any good hopefully he will refer you for further testing, to confirm the diagnosis. I am really whacked right now, so I hope I haven't written anything that doesn't make sense! Wishing you all the best for your appointment, let us know how it goes. Lyla

I hope your appointment goes really well. I'll be thinking of you and hope you get the answers you need. Best Wishes, Lyla

Hey, I'm sorry you are finding things so hard right now. I guess doctors are used to being able to just send people for particular tests and diagnose things more easily, and then when someone with dysautonomia comes along they really don't know what to do but they still have to do something. Also I've heard that things like POTS (Sorry I can't remember if you have POTS?) can be diagnoses of exclusion, so they have to run batteries of tests to make sure that there isn't something else obvious going on that could be causing the symptoms you are experiencing. Could it possibly be the reason why some of your doctors want so many tests done? I mean, I eventually found a great doctor who is really knowledgeable about POTS and he diagnosed me, but it's still like "Go here for this test, and go there for that test....." just to make sure there isn't anything else going on. And it can be kind of confusing and frustrating. I'm really sorry that none of your doctors seem to help, could you maybe go and see a dysautonomia specialist who might be able to kind of hold everything together and get the right tests done? I really hope that you manage to get things worked out. Best Wishes, Lyla

Thanks for the responses everyone. I guess people can be hypermobile without any problems at all and they probably don't have EDS, but that the POTS is another pointer to the fact that it could be EDS? Maybe? I'm not even sure if that makes sense! Also thanks for the website suggestions, I will definitely have a look at that. This particular rheumatologist that I'm waiting to see, is actually an expert in EDS, so that should be okay. Lyla

That's great that your doctor has something new for you to try. I hope everything goes well with the Octreotide.

Hi, I'm kind of confused right now, because I have POTS and I'm hypermobile, my cardiologist wants me to see a rheumatologist to see if I have EDS (which is in our family). But I don't have joint pains or really any difficulty with my joints and I don't think I have particularly stretchy skin. Is it still possible to have EDS if your only pointers are the fact that you have POTS and are hypermobile? Sorry, I hope that makes sense, I'm just really confused about it, my cardiologist (who is a POTS specialist) obviously thinks that I could have EDS, but family members and my local doctor don't really seem to think it's possible without the joint pain, stretchy skin, etc, and I don't want to go and see a specialist in EDS if there really isn't any chance I have it. I'm not looking for someone on here to diagnose me (as I know that's against forum rules) I just want to know if it's possible that I could have EDS without all the symptoms. Lyla

Hey, I'm so glad you're appointment went well! And it's great that you don't have long to wait until your next appointment. Hopefully you will really start to find some answers. It's a good idea to get your mom to go along with you. I often do that as she knows all the family history and she helps me remember all the questions I may forget to ask. Hoping you do really well in your next appointment, Lyla

Best Wishes, I hope that your appointment goes really well, and you get some answers. Lyla

Congratulations and Well Done on doing all your shows, that's amazing! The only thing I can suggest is to really rest and make sure you get enough fluids, which I'm sure you're doing already.

Bigskyfam - Yes I checked with them to try and make a new appointment, but they'd discharged me back to the specialist who referred me, and he can't do a re-referral because they've stopped accepting referrals from him. So complicated!

I get the feeling that I need to breathe deeper and faster, like I'm not getting enough oxygen, for no apparent reason. It just happens randomly, I don't know why.

I had worked up to being able to do a lot more than before, but then I stupidly overdid it a couple of weeks ago and I've been way down again since. I'm hoping to work my way slowly back up again.

I spoke to my arrhythmia nurse about it and she said to carry on taking the medication, because the symptoms I was experiencing were more likely due to POTS than the medication itself.

Thanks Corina, I'm going to try to go and see my local doctor soon, in the hopes that I'll be able to get all the referrals needed this year.

WARNING: Rant coming up! I am so frustrated right now! I had been waiting months to see a particular specialist, but when I got to the day of my appointment, I was really ill and couldn't go (as I wasn't sure it was just POTS and thought I might have a virus) so I called as soon as their lines were open to tell them I couldn't make it, but they didn't answer and so by the time I got hold of them it happened to be 3 minutes after my appointment time, and so the Doc I was going to see has discharged me! And so now I have to go back to my PCP and get him to refer me to a local hospital, then go there and see if I can get them to refer me back to the specialist, I was going to see in the first place! Crazy! Okay, thanks for letting me rant guys, it just seems like everything is harder than it should be at the moment as I'm in a flare with symptoms and the prospect of more travelling, more appointments, and more explaining to doctors who may never have heard of things, is just getting me down.

I'm in what I guess must be a 'flare' at the moment. I had been doing better with diet changes and medication, but now I feel like I've got back to square one and worse. Now it's like I'm SO dizzy when I get up I can barely hold out long enough to grab something to eat in the morning before I crash down on the couch. The breathlessness and fatigue have got far worse than they were and the nausea and abdominal pain is making it really hard for me to eat and to drink nearly enough fluids. Also I'm finding it hard to keep up exercise when I'm feeling so bad. What do you guys do about getting exercise when you're feeling really bad. My doctor told me to exercise everyday, but I just feel so awful at the moment I can't really go out. I'm thinking of getting a folding treadmill or something just so that I can keep up with exercise. What tips do you guys have for when you're in a flare? Like, how do you make sure you stay hydrated when you're nauseous, what can help with the nausea, in fact what can help with anything? And if you feel up to doing anything during the day what kind of things do you do to keep yourselves occupied, when you're too tired to really do anything? If that makes sense! Many Thanks for any help, Lyla

Is it possible to suddenly start experiencing side effects when you've been taking a medication for a couple of months?