Beckles

Thanks targs! I'll definitely look into that.

Thanks!

As thankful said there's a lot on here already. I was pregnant with POTS and one of the lucky ones (I was symptom free from conception till 1.5 years postpartum), but some people find it makes their symptoms much worse. So as is so often the case with POTS there's no good clear answer. I'm happy to talk about it more if you want though.

Thanks guys! It's wonderful just to talk about this with people who understand. MomtoGiuliana: Yeah I do wonder if POTS is so totally off the cards. The only proper TTT I've had was when I was completely symptom free and I know in general my standing threshold varies greatly, sometimes I'll get a 30+ bpm increase within one minute and other times not within the first 10. I might talk to the doc again about it next appointment and see if we can do the test again. Anna: No he didn't. That does look interesting, though different from the impression I got from his description. He said there wasn't any good name for this syndrome and so he'd just explain what he thought was happening. I'm definitely planning on pressing him for more details next time. This time I was just so surprised by the diagnosis change I didn't think of that many questions. Issie: Thanks! From reading about POTS the hyper version always sounded more like me, I do get some high spikes in my BP but it's generally pretty normal/lowish. How did they test your NE levels? Is it a particularly complicated procedure or just a blood test or something? Alex: Sorry to hear about your problems too! Yeah I've always wondered about the POTS diagnosis since standing hasn't been my biggest problem (though I can't do it for that long, fall over after 10 minutes or so). I'll definitely keep you posted with what info I can gather on this 'new' syndrome and the tests for it. So far all I know is that it's like POTS except you don't get as high a heart rate increase upon standing and you don't loose conciousness (presyncopes are really common but apparently an actual faint would rule this one out), and it's something to do with an autonomic overreaction to NE.

Hi all, So I've had a long struggle with diagnosis... (it started over 20 years ago) About 10 years ago a neuro decided that it must be POTS (though strange because I frequently get fast HR while lying down) but never bothered to do a tilt table test. He put me on propranonol and said that was about the best they could do. It helped a bit and I struggled through, got a little better for a few years and then got worse again. I then started to see a new neuro who said 'yep it's probably POTS but lets do that TTT to make sure, and now we know about some other things we can do for POTS'. But then I got pregnant and my symptoms vanished, not very surprisingly the TTT came back negative. The neuro thought it was the increased blood volume and that the problems would return soon after delivery. They didn't (despite large blood loss). They did return 1.5 years later when I stopped breastfeeding though. So I went to a new doctor (cause I'd moved). He did a 3 minute poor man's tilt test got a mild HR increase no change in BP, obvious blood pooling in the feet and me with just mild dizzyness. Anyway, after this and looking over my history he decided that it wasn't POTS but instead that my autonomic nervous system was overreacting to norepinephrine. I'd never heard of this and haven't been able to find out much about it. So I thought I'd ask the wisdom of the forum and see if anyone had heard anything about it. Is it similar to hyperadrenergic POTS? From the way the doc described it, it seems that my body is not responding normally to norepinephrine, not just that I have too much of it but that my body is reacting wrongly to what's there. He said there's a test for it but he doesn't want to do it because it's difficult, uncomfortable and not conclusive. He said there wasn't a treatment either but they could do things that might help with the symptoms: the normal high salt approach and then possibly putting me back on propranonol. Thanks!!!

Thanks! That's really interesting and timely. My doc just told me this morning that he thinks I have Da Costa's syndrome but not POTS.

Hello, I hope you're all doing fairly well today. I was in remission but my symptoms have come back recently. A lot of them are the same. In fact all of the old common day-to-day symptoms are back exactly as they were. There is one big difference though. Previously when I had an 'attack' I'd get a very fast heart rate for a quite a long time and as this went on I'd get chest pain, and then dizziness leading to near syncope. Now I get the dizzy faint feeling and the near syncope (often to the point of loosing vision and hearing and falling over but still feeling conscious). Then a few minutes later I'll get a sudden short intense whack of chest pain. I was quite used to the old pattern and felt like I understood the mechanisms behind it a bit but I don't understand this new style of attack at all. I think it's related to the POTS because it's started at the same time as all the other symptoms came back but now I'm starting to wonder. So I wanted to ask if any of you have similar episodes and what if anything you know about them. Apparently my old doctor on the other side of the country has made an appointment for me with a dysautonomia specialist nearby but I don't know when it is yet...

Yep. It worked pretty well for me but I had to take it every 12 hours and it had to be pretty exact. I started getting increases in symptoms if I was even half and hour late.

I don't have such a low body temperature but it is very erratic. A while ago I was learning about using body temps to predict ovulation and the people teaching me were shocked at how erratic my temperature was. I wouldn't be surprised if it was another POTS symptom but it doesn't really bother me much.

I'm not on anything at the moment. I was on propranonol which helped with some things but I was able to stop that for several years. Now that my symptoms have flared up again I'm still waiting to see another doctor so who knows what will happen.

Yep I had a really positive experience with my psych evaluation too. At first I was really angry about it because several doctors had refused to see me anymore claiming that my symptoms must be psychological. But when one finally organised a psych exam to look into that option it was a huge relief to be told that no they weren't psychological and it meant that the doctors took it much more seriously. As to what questions I was asked. The psych sat with me for a half hour to an hour and talked about the symptoms I was having, how I felt about them, asked me about how I handled anxiety and difficult situations and just a bit in general about my life.

Yes it is interesting that pregnancy affects POTS in such different ways. Really does show that there are different mechanisms behind it. I was fine all through the pregnancy (just had pregnancy symptoms of tiredness, nausea etc but no pots) had a very difficult delivery and everyone expected the pots to come right back, especially given how much blood I lost. It didn't come back until I started weaning though and it's only in the last month (when my son is 22 months) that it's really hit hard. I'm also finding that it's worse than it was prepregnancy, more like it was when I was a teenager. Oh well, looks like I might get in to see a specialist soon...

Interesting GingerA, how long did it take for your symptoms to return postpartum? I feel that I'm worse now than I was prepregnancy but it could also just be a bad few weeks...

Thanks MomtoGiuliana and Sandy. Apparently there is a specialist in the hospital across the road from my work so I'm hoping my other doctors can work out their issues and get me a referral there soon. Yes the remission was wonderful and I feel really grateful for it. I really don't know how I would have dealt with my son in the first year or so without it. It is really hard to have it come back after so long but I still have hope. Good luck to you two!

Hi sarct, I just found our post and the same thing has happened to me. I had POTS and when I fell pregnant it disappeared. My symptoms started to come back when my son was around 1.5. At first I tried to deny it but after collapsing a few times at work I'm now heading back to the doctors. It's really hard to do. But I'm sure we can find doctors who can help us and I really hope that this information of it disappearing with pregnancy and how it returned will help them to actually be able to do something. Good luck with it all!