Janey

Dear David, I'm sorry you've been going through these symptoms for so long, and I think all of us here can empathize with a lot of them. I looked at your graph and I would definitely say that the statistics on there are indicative of POTS. It's impossible to say what type of POTS without you having official testing and for doctors to see exactly how your HR and BP react to orthostatic changes. I think we've all come to realise that there are no one set of symptoms for POTS, and a whole host of symptoms can occur for different people, yet the condition is still the same. It seems like it should be a simple heart rate and blood pressure matter, but often people with POTS feel like they have run a marathon everyday, and that certainly seems to tie in with what you're feeling. I especially empathize with the feeling of being "spaced out." I described this same feeling to my doctors and they too said it was a symptom of POTS. What I would recommend you do, is to get your doctor or cardiologist to give you a tilt table test for POTS, or if they can't do that, get them to take your HR and BP lying down and then standing up, so that you can show them there is an autonomic problem. If worst comes to worst, the POTS specialist in the UK, Professor Christopher Mathias, accepts patients from Europe and Scandinavia, and if you can afford the flight, you can come over here and see him. His email address is available on the internet, but if you can't find it I can send it to you. All the best Janey

I can't tell you how much this resounds with me. I have been unemployed for nearly a year and I was diagnosed with POTS during my last job, I was ground down by the thing and it nearly killed me. Friends and family said "just stop, we'll take care of you" but a year later they're starting to ask questions - "are you better yet?" - and I'm beginning to wonder where my life has gone - that "career" that I always dreamed of. I,too, feel embarrassed and sad and depressed. I was in hospital for a week two weeks ago and weirdly felt "safe." I was surrounded by other people with neurological problems who couldn't work, and nothing was expected of us. We were in hospital, we could all just be ourselves. But outside the hospital doors I feel like I've been thrown back into the mean, ruthless outside world that I can't fit into anymore - not through work or career, at least. I can empathise, but I can't offer solutions. I just want you to know that you're not alone. Janey

Thanks! Just feeling awful still. The fact that they tried to rev my symptoms up to their worst is lasting above and beyond my return home where I've been feeling sooo ill since I've got back! How are you doing on your search? Have you been to see the (was it Sheffield?) cardiologist? xx

Hi Maxine, Yes, the tests were great. I'm just waiting for the thorough follow-up and I hope it won't be a disappointment. I know that Flop and I have the same POTS specialist and he's great for an accurate results and diagnosis (based on every day stressors), but his follow up and appointments after that are not so good; mainly, I think, because his work is concerned with getting people in Europe diagnosed, onto medication and researching POTS. In my case, he gave me a TTT a year ago to diagnose POTS, then that was it until now where he's given me more thorough autonomic testing. I find it interesting that your symptoms get worse as the day goes on - do your stomach/bowel symptoms get especially worse? Mine are so bad from 2pm onwards, but perfectly fine in the morning! It's infuriating! Do you think the bad stomach stuff in the afternoon has anything to do with EDS? I certainly get more pooling in the afternoon and evening and swollen ankles etc. But then again, I get most of my joint pain in the morning... Janey

*phew!* Thanks for that,Flop!

Hi Julie, Thanks so much for your support this week... the meal test wasn't too bad, but I did have a lot of nausea and cramping when I was tilted up. Luckily they were very good about tilting me back down when I needed it. The worst one ended up being first thing in the morning when I was slipping in and out of consciousness and they didn't tilt it back down (they pressed the wrong button and ended up lowering it vertically rather than horizontally!) I would really recommend that you and Mack correspond with Prof Mathias in the UK if you don't feel you get what you need there. He and his team have been so thorough and understanding. Janey

Thanks for replying, Flop. Yes, the tests were under Prof Mathias in Great Ormond Street Hospital. He is just fantastic, isn't he? Needless to say, I haven't had my 'proper' follow-up (only a brief one) which will detail what went lower or higher and when, but I'm too curious to wait until then (a month's time) and am basing my assumptions on what I saw on the BP and HR machine while the TTTs were taking place. I think my low BP stays the same throughout the day, and is even lower before meals or if my stomach is empty (before breakfast and lunch it was between 80/50 and 90/60 ) Do you think it's possible for the body to get "tired" of compensating as the day goes on, and then just stop compensating later in the day for lack of/too much blood flow? I don't take any meds to deal with BP or HR. I was thinking that by the end of the day, my legs do pool more, which may mean that my BP is even lower by the evening (which is when I get my worst stomach and bowel symptoms.) I certainly noticed that my HR didn't jump by quite so much in the afternoon/evening, (maybe a jump of about 20-30bpm) whereas in the morning and early afternoon it jumps as much as 60-80bpm) leaving me with chronically low BP and nothing to counter it. Would stomach and intestinal symptoms be "worse" if blood was pooling in the abdomen? Or would it make digestion more efficient? Prof Mathias' nurse said something about how it's easy for blood to get "stagnant" when it pools in the abdomen too.

Have any of you EDS-ers noticed that wikipedia has this to say about dysautonomia? "Prognosis: The outlook for patients with dysautonomia depends on the particular diagnostic category. Most forms of dysautonomia resolve within 2-3 years and are not life threatening, even if life changing in the form of minor to major limitations in activities of daily living. However patients with Ehlers-Danlos Syndrome, Marfan Syndrome or Parkinson's disease have a chronic, progressive, generalized form of dysautonomia in the setting of central nervous system degeneration, leading to a generally poor long-term prognosis." Can this be true? Or is "just POTS" not dysautonomia?

When I first came on here I had been diagnosed with EDS and POTS from a tilt table test. This last week I've been in hospital having more autonomic/POTS testing. This time they gave me a tilt table with a meal, a tilt table before and after exercise, a tilt table when I was both hot and cold. They basically tested my orthostatic tolerance via a tilt table in all daily life situations, which was great. I've observed in my daily symptoms that my POTS tachy and low BP is much worse in the morning through to about 2pm in the afternoon. Then after about 2pm, my digestive symptoms really kick in and I get bad gastroparesis and intestinal dysmotility. Over this time span in the TTTs, I noticed that my heartrate compensates a lot for blood pooling in my legs from the morning until about 2pm... and then from 2pm onwards, I just have really low BP, pooling and less severe tachy. What would be the mechanism at work which means my bowels work better when I have tachy, rather than without tachy? I was trying to ask the doctors this, but they never seem too concerned with the stomach/bowel stuff - they are always so focused on the BP/HR stuff.

Hi Guys, I had a head/brain MRI today in the autonomic unit and wondered what aspects of dysautonomia they use tan MRI to diagnose? Does anyone know? Janey

Thanks guys, this is sooo helpful!!!

I get 3,4,5 and 7. I get 5 though because I have Ehlers Danlos Syndrome. Have you been checked for this?

I've asked this question before in a different form, but I'm about to go into hospital for dyautonomia checks and really want them to take notice of the fact that I get terribly travel sick, but I'm wondering if it's something they'll deal with? I get terrible, terrible motion sickness. Unless I take a high dose of compazine/stemetil/dramamine, I only have to be in any form of transport for 5 seconds and I have vertigo, nausea, vomiting, diarrhea, major orthostatic problems and can't walk in a straight line. There's nothing that directly relates it to POTS, but I also can't see the possibility of it NOT being related to the autonomic nervous system? It's the bain of my life because I'm not allowed to drive (because of POTS) so have to get driven around by everyone else, which, unless I take high doses of compazine, means I get very ill. It also seems related to my posture. If I am horizontal, I get a lot less affected by it than if I'm sitting up. Caffeine makes it much worse, alcohol dulls it a little. Anybody have any idea how this vestibular thing may connect to a vascular/POTS thing?

I started taking domperidone a week ago and haven't been able to get up in the morning til midday... even if I go to bed early the night before. Do you think they're connected?

God, I am in the same position as you and encountering exactly the same difficulties. My area is television and journalism and I'm trying to move into the area of PR and Marketing. I have been off work sick now for over 9 months, but financial needs dictate that I now must go back to work. One thing that I did recently was to write to the highest CEO of a good company I know and tell them the absolute truth. I explained what POTS was, what symptoms I get, what I can and can't do. I told them I was passionate about the area, would work long hours for them (but on my terms) and what my preferences were. I also said I would be prepared to sacrifice perks of the job like a "top" salary, just to get a steady wage and to be given the opportunity to create a work/POTS balance. Surpringly, she replied to me and the email started: "I greatly admire your determination to continue your career and I'm very moved by your story. Shall we meet up at a place that is good for you and discuss what the options are?" I was flabberghasted, but so relieved that I could tell the truth and not be rejected. Why don't you try it?

POTS is on a constant continuum and that's part of its nature, so you have to bear that in mind... if I stand up too long, I get low BP and high HR, if I lay down too long, I feel like my body is barely functioning anymore because blood's just not bothering to flow! The main thing that lying down does help though, is the gut involvement in my POTS/Dysautonomia. I seem to get intestinal blockages when I'm standing or sitting up, but when I lie down, they completely clear with lots of gurgling and releasing gas. It's so strange. My POTS migraines are better lying down, my BP and HR are more stable lying down and my brain fog is better lying down. But it's not going to be the same for everyone.

Is it something to do with blood pooling in the abdomen?

It's an EDS thing isn't it? I heard from prof Grahame that people with EDS either can't get numb/stay number than everyone else pre/post surgery... Something to do with collagen...

Well I had to come of a course of Augmentin last week because I couldn't keep anything down/in then had to be admitted to hospital for IV fluids for a couple of days... Since coming out I've developed a flu-type thing and now got chest pain when I'm breathing. I've heard chest pain is a dysautonomia thing... should I be worried? Or might this be something else?

I am in the UK, based in Oxford and under the care of Christopher Mathias at Queen's Square too! If you need any help with any of the other doctors associated with the condition (such as gastroenterologists, urologists etc who have experience with POTS patients, let me know!)

Oh my GOD - that's horrendous! Which hospital was this?

I get exactly the same as this too. So we're all in the same camp.

I am on the anti=biotic Augmentin for bacterial overgrowth in my small intestine (as a result of EDS/POTS) and I'm on a really high dose. I am on day three and can't keep anything inside me. I'm so dehydrated I'm having a POTS crash and this just CAn'T happen now! I have interviews for a couple of part time jobs this week and I REALLY need them because I have no money, and if I am crashing now I'm not even going to make it to the interviews. If I stop taking them right now, how bad will it be? Will I cause even more bacteria to grow/make the problem worse?

For those of us with EDS - does the fact that we have POTS as a result of EDS mean that we have a "vascular" element to our Ehlers Danlos? If it does, shouldn't we be having regular ultra sounds/CTs to get an idea of the thickness of the main blood vessels in our bodies? Apologies if I've been thick and got this al wrong, but would appreciate being enlightened. Janey

Thanks guys, REALLY helpful replies! Will let you know how my second TT goes.. Janey