Janey

Hi Julie, this has made me think about my own bowel diagnosis! Would a barium follow through and xray diagnose small bowel dysmotility? Or can it only be found through a manometry? If it could, I'd be really pleased, and I'd like to have one! Janey

Hi Ana, First of all, I have "episodes" of gastroparesis, associated with dysautonomia, which, for a long time, didn't come up on a gastric emptying study. When it's bad, it's really bad, but when it's not, I still get lots of nausea and churning symptoms (like you described) but the food actually IS passing through rather than stuck. I've been told this is either to do with blood pooling in my abdomen, or blood moving away from my abdomen, but ALSO to do with Ehlers Danlos Syndrome. I don't know whether you've been tested for EDS, but there's a high incidence of the genetic syndrome EDS in POTS patients and those with dysautonomia. The stomach and intestinal problems associated with EDS are more common than GP and dysmotility but produce very similar symptoms. For eg, I have very "stretchy" intestines. In the same way that my blood vessels dilate too much and cause pooling, my intestines stretch too much and cause diverticuli in my bowel. This causes symptoms like nausea, pain, bloating, flatus etc.. All the same symptoms but just a different cause. Have you ever been tested for EDS? Janey

I'm so sorry this is happening to you.. it hasn't happened to be yet but I wouldn't discount it happening very soon, as I get more symptoms every day. I hope that it will just be temporary and will be absolutely fine in a few days/weeks. Just a shot in the dark and the most obvious answer - isn't one of the main issues with POTS blood not getting to the head? Maybe there just wasn't enough blood/oxygen/minerals getting to the hair follicles and so the hair didn't or couldn't grow? I know it's not a great answer, but at least it means it only happens during flares and at no other times? I don't know about you, but if I can think of WHY something is happening, it makes me feel a bit better. Janey

It's often that the "stomach flu" is the cause of 'food poisoning." The two are inter-related whether or not the food was contaminated with norovirus or salmonella. Whatever it was, was on people's hands and surfaces and got into your food. Definitely sounds like a stomach thing. I get confused with POTS symptoms and general symptoms that other people get too! I pass stuff off as POTS until I getting nasal congestion or vomiting! Hope you feel better really soon... remember to drink ridiculous amounts of water! As if I need to tell you that... janey

1. Janey 2. 26 3. POTS, EDS III, Gastroparesis, Intestinal dysmotility 4. 25 5. UK 6. Lightheadedness, migraine, extreme nausea, dizziness, incontinence, tachycardia, vision problems, extreme fatigue, extreme-double jointedness and joint sprains/pain, chest pain 7. Nausea, dizziness 8. Beta Blockers 9. Compazine (for nausea,) Florinef, Salt, walking, anti-histamines

Thanks so much for your reply, that has really helped me. And you're right, that's the same. When I wake up in the morning I feel like I've got a layer of acid on my lungs and when I drink a glass of water, I always feel like a few drops go down my windpipe. I just emailed my dysautonomia specialist about this and he sent me an email straight back (now that's good service!) and said it was a "very interesting symptom" and that he needed to consult with his colleagues about what should be done. Hope they can think of something. I don't want to vomit and then have it in my lungs.. Janey

Hi Leslie. (I have really bad brain fog right now, if any of this is mis-spelt or wrong phrasing/words etc, hope you understand it!O What you've gone through sounds terrible and I'm so sorry you had to experience all this before you found out what it was. Like the others have said, I would recommend you definitely see a dysautonomia specialist, mainly because they are normally very sympathetic about the way you feel compared to some other Doctors. I would also suggest uou gey checked for Ehlers Danlos Syndrome, as your back/joint pain seems to correspond with the symptoms that you have too. Please keep writing to the group if it helps you, we all understand! janey

Does anyone have problems with swallowing? There are several issues I have with it: 1. It hurts, 2. It feels like tiny bits food and water go down my windpipe instead and get on my lungs 3. I feel like my pipes are double jointed and click in and out of joint. I've heard that this could be an EDS thing - does anyone else have it? It scares me that this can suddenly happen. There I am rattling along with my collection of random autonomic symptoms and here comes another one out of the blue.. Janey

Yogini, Is there a specific dysautonomia GI support group? janey

Sunfish, thanks so much for your advice. Seeing your post prompted me on to your website and then to read your member of the month write up. I'm so impressed by the way you cope with all this, and thank you for offering support over GI issues. Janey

Wow, what wonderful, non-judgemental replies! Having read all your responses, I think that I'll see if my Doctor will prescribe me Marinol when the time comes (thank you Maxine and Sunfish for suggesting this!). It seems like a safe way to explore whether that might be the answer without any 230bpm HRs, crazy BPs and hospital rushes in the middle of the night! Anyone know whether it is a prescription available in the UK? Getting prescribed Marinol will be a long road.. I suspect my docs will probably want me to exhaust my use of metoclopramide, compazine and domperidone before I go there..but at least I know it's an option that I can try in the future. I tend to get rather bleak about my GI symptoms (more than POTS and EDS pain) because they are the ones that actually stop me interacting with others and talking to them. If I feel nauseous, the last thing I want is a conversation! Janey

It may sound crazy to some, but I don't tell other people that I have "POTS" or "Gastrointestinal Motility" or "Dysautonomia." Because I find when you explain them outloud to people, they just sound ridiculous. Having problems standing up sounds like you've made it all up, I find. SO, I just say "I have a neurological problem which means parts of my nervous system don't function properly and all sorts of things affect it like diet, exertion etc" and then they just nod, give me a brief sympathetic look, and get on with what they're doing. In terms of being motivated for a healthy lifestyle, I am the worst person to ask about this. I often comfort eat because I feel miserable about being ill and this then makes me feel much worse and it's a vicious circle. In fact I'd say most of my time with dysautonomia has been spent punishing myself through eating too much and all the bad stuff, and then suffering for it. Janey

I get tingling mouth and throat which becomes a REAL problem for me because it makes me gag. Does this sound similar? Or is your burning preceded by tingling? Janey

A friend of mine self-medicates with cannabis for pain and nausea management. As my bowel dysmotility is probably my worst symptom of them all, she has suggested that when I get it really bad I should take a tiny bit of cannabis and it will help my nausea and pain and get my gut moving. Obviously I can see the potential pitfalls with POTS and drugs (I've never, ever taken any drugs before) but my symptoms are so bad sometimes I would consider this. Anyone tried it? Anyone have any idea what it would do to someone with autonomic problems? Janey

I get non digestion-related abdominal cramps, mainly in my pelvic area (which are also not PMS, but feel like PMS.) I don't know where they come from or why, but they're periodic. Before I was diagnosed with Dysautonomia I went for a pelvic ultrasound but the Doctors could find nothing there that would justify the pain. I was told by my neurologist when I was diagnosed with dysautonomia that it could have been the bacterial overgrowth from my intestines spreading to parts of my pelvic area, a bit like endometriosis? I haven't followed it up from a dysautonomia perspective because I haven't had a flare of it recently, but I will do if it comes back. Janey

What does monophasic mean? Is this when you don't get periods, you just take it constantly? If so, I take Yasmin, which I find helps my symptoms (I only know this because when I came off it a year and half ago it made everything WORSE!!) because it raises my blood pressure slightly. Yasmin you can take continually or in monthly cycles, stopping each 28 days to menstruate. Janey

This could be the same feeling but we've interpreted it differently... When I am sitting I feel like I am going down in an elevator! I take that as my body's request to be more horizontal! Janey

I have my POTS Doctor and EDS Doctor,my gastroparesis specialist , my bladder doctor and my GP (I think those of you in the USA call this your PCP?) but I'm finding it so hard to get what I need from them. It's very difficult to tell with some symptoms whether they're POTS or EDS - for eg, motion sickness, sometimes I feel dizzy because I can literally feel the blood being drained out of my brain when I'm riding in the car, and other times I hear that bad motion sickness is caused in people with EDS by the sensitive bones behind their ear moving around. My EDS doc considers this a peripheral symptom (even though it causes lots of problems for me) and therefore tells me to go to my GP to get a prescription. I go to my GP and ask for the prescription and he thinks I'm mad asking for all these pills when I KNOW for a fact he doesn't understand POTS or EDS. He said to me the other day "EDS just means you're flexible, it doesn't mean you need a whole pharmacy at home." Another eg, who do I go to for hormone problems? Sex drive problems? As they originate from Dysautonomia, I assume it's better to present them to a Dysautonomia specialist rather than an ordinary GP? How do I find a Doctor who will take the WHOLE me and all the symptoms that I get and help me with them all? Is the neurologist supposed to do it? How do you all join up your symptoms without having to educate every Doctor on the other aspects of your disorder? They just don't seem to communicate about it! I assume I have comprehensive medical notes, but they obviously don't read them. Janey

I have this, in my left eye too, but again have NO idea how to stop it! It's so irritating isn't it?! I find coffee aggravates it... Janey

Hello Dustin, Welcome to the forum, I'm relatively new here too and have found it to be a fabulous support. Are you the same Dustin (with EDS) who just befriended me on facebook? (My real name is Katy, and I am from the UK.) I don't have the crying as regularly as you, but I have an unattributable feeling of despair, which, in its more extreme attacks, will make me cry uncontrollably. I am convinced this is down to Dysautonomia because 1. I only get it when I'm standing up and 2. It can come and go very quickly (like every other autonomic symptom does!). There is no fading in or fading out, it just starts and stops suddenly. I don't get tremors anywhere other than my legs, but you'll see on here that there are lots of people who do. I hope you manage to not feel alone with your symptoms - I think we have all been there. Janey

This is such a hard one. Coffee tends to be my "back up" if it's all going wrong. If I'm having a terrible symptom day and I just need to keep going because maybe I'm working to a deadline or it's somebody's birthday and I have to be there, I will drink coffee. It will do the job for the next two-three hours to keep me awake and moving. But I can't see myself "using" it every day. How about doing half a cup of decaf with milk/soya and then monitoring you reactions? Janey

I had very little support from my family, partner and most of my friends when I first became ill. When I was too ill to work they said I should stop being lazy and a hypochondriac and that made me feel very isolated and borderline suicidal. There's nothing worse than feeling there is something deeply wrong with you and no-one believing you. The things that kept me going were forums like this where there were people who were experiencing the same sort of distress and some who had found answers - and those with answers really encouraged me to keep going. I also made a few friends who had chronic conditions (not dysautonomia or POTS )and they understood the mindset that goes with being ill every single day, and would be fine if I had to cancel on meeting them two minutes before we were supposed to meet because I didn't feel well. What also kept me going was some sort of spiritualism. I eventually managed to see my illness in the perspective of something to draw strength from and learn from, or something that was teaching me how to suffer (Buddhism.) Janey

This is a great thread and I've been desperate to tell this story! Very briefly: I'd always been a tired, lightheaded, flexible, frequently nauseous person but as it was my reality since birth, I assumed that's just what being a human was like. The first sign that I had anything autonomic-related was when I was running on a treadmill with a personal trainer at age 19 and my heartbeat was 200bpm. He accused me of being a smoker, said my arteries were probably clogged and sent me to the hospital. They said I had "an early catecholamine response to movement," then discharged me. The big change came when I went to India at age 23 with my partner. I adopted a dying puppy and caught an infection from it which seemed to attack my nervous and digestive system. From the moment I caught it, the lightheadedness, dizziness, nausea, stomach pain, tachycardia and headaches became really, really severe to the point that I could hardly move. I returned home and went straight to the Doctor. It was assumed I had a parasite and I had all the stool tests, but they were all negative. I was referred to a gastroenterologist for an endoscopy and a colonoscopy. Negative. They said "there's nothing wrong with you." I went back about 20 times over the next year and a half to the point that the Doctors started to ignore me. Some, when they knew I was coming would stay silent until I left the room. At this point I was starting to get solid sediment in my urine (about an inch deep,) I took it into the Doctor as the only physical evidence that I was ill, but he poured it down the sink and told me to leave. They were rude, disillusioning and horrible. One of my last appointments there was to go and say "I don't know if I'm mad, but I'm so very depressed and I need you to just help me. Maybe I'm not ill, but I feel terrible, physically and psychologically - please help me." The Doctor suggested I go on a website which would help me change my negative thoughts to positive ones. Nothing else! After two years I was at my wit's end and saved up money to see a Urologist privately at great expense. During the consultation, the Urologist took my blood pressure (no Doctor had ever done this before!) and told me it was very, very low. He confirmed to me that something was obviously wrong, but it was beyond his skills to diagnose it. I left with a lighter heart. I went home and typed low blood pressure and digestive symptoms into google. POTS Place came up. I read through all the symptoms and had nearly every one of them. I knew instinctively that this was what I had. I looked up the Doctors on POTS place and saw that Professor Christopher Mathias was the POTS expert in the UK. I found his email address online and wrote him an email asking him to see me. Bizarrely, he replied straight away and said he could help. He said that as my GP didn't believe that there was anything wrong with me, there was no way I could get referred to him on the National Health Service. He asked me if I could pay to see him privately and then promised that he would try to get me tested and treated on the NHS. I paid ?350 ($583) to see him and he diagnosed me with POTS. He referred me onto Ehlers Danlos expert Professor Rodney Grahame who diagnosed me with Ehlers Danlos. And in November I'm going to see Professor Qasim Aziz for my bowels. All on the national health service. My home Doctors went into shock that I wasn't a hypochondriac. I asked to see my medical notes under the Freedom of Information Act and written all over them were things like "hypochondriac," "eating disorder," "she thinks she's got autonomic problems. She probably doesn't know what the word means." It was horrendous!

Idiot, idiot doc. I've had similar experiences with some doctors who really don't want to understand what's wrong with you. One Doctor I used to go and see used to stay silent until I'd left the room!! I complained about him and published a review of him online, I felt so angry. Have faith that other Doctor's will be better and keep looking until you find one and speak to them. The squeaky wheel gets the oil! Janey

Oh my goodness, you poor, poor thing, please take comfort in the fact that we're all here for you right now and whenever you need it. Where are you based? If we know I'm sure we can all think of someone or something which might help in a practical way. Did your kids get a chance to say anything at the proceedings? Will they get a chance if you make an appeal? Is there a Doctor who you've been seeing who could help you and comment on your state of health and what you probably can or can't do? And also could let them know about the medications you're taking etc and how they help or affect you? Having a professional on your side like thar can really help things. If you feel any extreme feelings, please come on this board and talk about them before you do anything. We will all help you get through this. Janey