Janey

Thanks! Hope you are okay, let me know how it's all going! Janey

Hi Erik! I know!! I thought it was only cardio EPs that could do it! I think it might be slightly different in the UK because, as I said to Macks Mom, there are three or four main doctors in the UK who cover the dysautonomia territory and they are a neurologist, a cardio, a geneticist and a neuro-gastroenterologist (I've seen them all!) and between them, they seem to cover a lot of ground. A cardio was present at the time though, but it was my neuro-gastroenterologist who was taking the lead. The gastro I saw was able to give me some great POTS/general dysautonomia advice too and I felt really looked after by him. It was really encouraging that he has an interest in the WHOLE disorder rather than just his area without taking other things into account. It was more holistic. I think the blood samples were testing catechlolamines (sp?) do you know anything about that? Janey

Hi Jana, I really feel for you with the chronic constipation, that must be so difficult. Do you have EDS too or is this purely down to dysautonomia? Do let me know what news you get with the colonoscopy. Janey

Hi Maxine, thanks so much for replying. I feel better knowing that there is someone else going through it too. I'm so sorry to hear what happened to your brother and I can understand why it's a worry for you. Does your GI have a similar view of EDS and the bowel as mine does? Mine said that because our intestines are so stretchy, food just enters them and builds up rather than moves along, causing pressure, soreness, diverticula and bacterial overgrowth. He said there was a part of my intestine that was so diverted and had so much bacterial overgrowth that it didn't push stuff through any more and had lost all "tone." Apparently it was relying on the propulsion from the part of the intestine that came before it, and the pressure that built up from other food that was coming through, to push it down. Would you say that your GI troubles are where your worst symptoms come from? I'm not normally a fainter (except during the last TTT!) and as long as I take my salt tablets and beta blockers, my POTS is fine (just exhausting..) but my GI problems are, by far, the part of me that is going rapidly down hill... Janey

Hi Julie! I've forgotten the name of the process that the GI did but it was something like "mammography" where it can tell which areas of your bowel are slow and which areas are normal speed and you have the tube down your nose and into your bowels. I also had a barium swallow with xray, an ultra sound and an endoscopy. I was using metoclopramide before the appt and it was working 30-40% of the time which wasn't really good enough, so he put me on domperidone three times a day. The anti-biotic he put me on was Augmentin (as I'm from England it could have a completely different name where you are..) and then a two week break with probiotics and then back on a different anti-biotic. I haven't got the anti-bio from the chemist yet so I'm not sure what dose. I've been delaying 24 hrs before I take it because my POTS gets really affected by anti-biotics and I seem to get all the side effects! I was also really shocked that he gave me another TTT, but there are three guys in England who work very closely together in EDS, POTS and Dysautonomia, and this guy is one of them. He is a neuro-gastroenterologist. I think because the country is so small and we only have these three experts, they double up on a lot of the testing. There was a cardiologist there, but my gastro was doing most of the instructing. He also managed to help me with advice on loads of my POTS symptoms, which was great. He is certainly the best doctor I've seen so far on dysautonomia, and I felt like he had a wide knowledge of the whole condition rather than just the gastro part. And yes, he is a professor at a major teaching hospital in the UK. Have you also been told by the doctor that your bowel stretches? Do you and your son's bowels sound similar to how I'm describing? Janey

Hi Maisie, I'm exactly the same.. my only thought is that our bodies somehow manage to get a semblance of balance while we are horizontal and asleep and they manage to correct everything that has gone wrong that day. If we get deprived of sleep then none of those balances are redressed and so we get the day before's imbalances lumped on top of the next day's imbalances, making it all together worse.. That's my theory, anyway! janey

Hi Guys, I saw my gastro today and got some results of tests. I'm interested in whether any of you have had similar things. He said I had diverticula all over my upper bowel because of the food not being propelled properly. Because it hasn't been moving, it has made it pool in certain parts of my intestine, therefore stretching the intestine into bulges (my EDS doesn't help here..). He also said there were a few areas of rotten intestine that had so much bacterial overgrowth that they were no longer functioning properly. He's put me on back to back anti-biotics for the next 6 months and says if that doesn't sort it out he'll have to remove that part of the intestine. He also said I need to have a botox injection in my pylorus gland to keep it open. Has anyone had this? Or have experience of taking the anti-biotic Augmentin? Bizarrely he gave me another TTT and I blacked out for the first time (I'm not normally a fainter). He then proceeded to take 8 viles of blood testing for hormones, celiac, thyroid - all the other usuals, STRAIGHT after the TTT! I felt awful and so faint I could hardly walk back into the waiting room and had to drink coffee and loads of water before I could even leave the hospital. I've been thinking of starting work again (not doing what I was doing before, but just a part time job) but he said on no account should I get a job until my symptoms are under control. And that has been proved to me by the time I got back today, now I'm having a crash, lying in bed from being on my feet too long today. It's the first day I've felt completely disabled and completely out of control of this illness. I know I'll have better days, but I just needed to vent. Any similar experiences with the gastro stuff would be interesting to hear. Sorry for terrible writing style, just so out of it this evening.

Hi Maisie, We all do understand and I'm so sorry you're going through this. We never know what's going to happen with this illness, but I'd say a lot of people with dysautonomia and POTS experience symptoms which go up and down over their life. When it first started affecting me I was floored, couldn't get out of bed for a year, couldn't walk 10 yards down the road. I had a period of 4 months when it all mostly went away and then it came back with a vengence for another 7 months. Currently I've got moderate dysauto, which means I'm not in a wheelchair and can walk, but I still spend most of my time lying down. If your symptoms have changed so dramatically in months, it is perfectly possible that they could dramatically change back - if that is your body's own personal style. Are you being treated by a Doctor for ALL your symptoms? If you feel some of your meds aren't right for you, remember to look for alternatives, ask for different things, don't settle for substandard treatment or substandard help with this condition. Look for recommendations of herbal medicine, acupuncture. Keep searching for what might help. In terms of getting a "hold" on it and being able to say "okay, this is as bad as it's going to get," , I know exactly what you mean and it takes a while. When I first got diagnosed I was having crying fits, panic attacks. I would go to bed crying, fall asleep, have 8 hours of release from the physical **** I was going through, then wake up and cry again. It DOES get better, I promise you. You learn to deal with it, you learn new things while lying down. I've become a reader again, I've seen documentaries I would never have seen if I hadn't been bedridden, I've written stories and poems for magazines and I concentrate and listen so much more. And every time I do manage to go out and do something, I always do it well and to the best of my ability. I'm sure you will find this too. And things change.. my Aunt, we've discovered has lived with and coped with dysauto all her life. She's never been able to work and has had a lot of a abuse from it, but she's finding that while she's going through the menopause, it's disappearing! It's going! Which means, hopefully that she is going to live the rest of her life without this wretched disease. Please keep an open mind, know that we're all here with you and we do understand. And please remember that ANYTHING can happen. Janey

It's sometimes a way of connecting to share hardships big or small. I know they're not equal hardships between you and your friend, but maybe your friend thinks it's okay to say that to you and thinks that the understanding is in place anyway? It would of course have made it SO much easier to take if she had precursed it with: "Of course this is nothing compared to what you go through every day, BUT..my husband is really depressed about not being able to run the Boston Marathon." Janey

My GI symptoms are much better when I don't eat wheat and gluten. I don't think that means I'm celiac, as celiac is quite severe, but I think that wheat/gluten irritate my GI tract...

I've often felt that being upright is to do with an increased sympathetic nervous system reaction. Thankful, you have raised cathecholamines, isn't that something to do with an early sympathetic reaction of some sort? I feel like my body really overreacts to being upright in every possible way it can. So my heart beats faster, my blood pressure drops, I go all fight or flight, I get incontinent, I feel nauseous, I get stomach pain. I've thought for a long time that maybe this could be prevented by anti-depressants which will inhibit my sympathetic nervous system - but the doc won't give them to me.

Really Jana?! I was for 20 years, and since getting dysauto/EDS and throwing up so much, I've somehow got more used to it. But if I go through a period where I don't vomit very much... it comes back. Janey

Jana, I really appreciate you replying to this. So all POTS associated headaches/nausea/pain/vision problems/whatever get worse when you are stood up? Most of my symptoms are bearable when I'm lying down; I could conduct my whole day, eat more or less normally, work, do everything lying down because the pain/nausea/symptoms are half as bad. Would you say this is true of you too? Janey

Janey- I don't have EDS but I do suffer from the digestive problems you describe ( but not as badly). For me I think the problems have to do with movement. I know I can feel sick if I roll over in bed too quickly. Does moving more slowly help you? I do get sick if I stand too quickly. Also if I have a "surge" I am running to the bathroom. I have found that when If I take a probiotic it helps a little- not because it fixes the problem. But because when you have digestive problems a lot you system just gets out of whack. I have gone form basically having to run to the "loo" all day - To not having bad problems every day (except I am always sick when I get out of bed). I know they won't "cure" you but a probiotic can help replenish the good stuff in you digestive tract that we are always losing. Sorry I am not more help. I just know with me my digestive problems are POTS not EDS. good luck kari Hi JayKay, thanks for this. You're right about the rolling over to quickly and the quick movement, I get that too. I wonder if it is just me though who has such a vast difference in my symptoms between lying and standing. Obviously we all get the hypotension and the POTS symptoms, but it seems every other symptom of POTS gets significantly worse too. Janey

Sara, are you an emetophobe? Janey

I have had this sort of pain before, it's not nice, and it makes you wonder whether you need to take a trip to the ER. I get it when I'm generally autonomically run down (which doesn't take much!) And somehow, like yousaid, it involves peeing/bladder/intestines/rib cage/ everything! I can't tell you what it is, and it might be worthwhile me checking out my gallbladder too, but with me it goes away after 3 or 4 hours... Janey

Hi, yes it would be really nice to see you! I have to build myself up to come into town sometimes because even the people and crowds in central Ox (I now, it's not even London!) often make me feel ill! So Saturdays are out and weekdays are best. Maybe we should PM our numbers?

Anybody got any idea about this? Is it an obvious answer or am I the only one this happens to, despite taking salt pills? Still feeling my way here.

Hi dizzzyde, thanks so much for your post, I'm really reassured that others are thinking the same things. I wish we could all somehow set up an international company which we could manage from our couches and beds and just chat on the phone or webchat, and then have some sense of success, but no chance! In terms of the way I handle my illness with people, it depends who it is. With my partner I'm as raw as it comes. He sees all the episodes and toilet dashes and crying and frustrations. My parents usually only see me when I'm vaguely okay, or just about holding it together. I can sometimes manage to hold an episode in for about 15 minutes and then when I can finally get by myself, I let it happen. But the longer I hold it in, the worse it is when I finally let it happen. I have a whole set of friends who haven't seen me when I'm ill but know what I have and are prepared for me to flake out on them often. I find those are the best and most healthy relationshops I have because they feel the most unconditional: They still invite me out and come round and they expect me to text/call and say I've had a crash and I can't come. At big family gatherings with extended family and friends of the family, I have to pretend I'm well. I really have to build up to it, and I usually get a crash the next day because I'm holding so much in and dosed up to the gills with anti-spasmodics, anti-nausea meds, anti-diarrhea meds, salt tablets, paracetamol etc etc. God it's exhausting! That's why I'm happier when I'm on my own or with my animals! Anyway, I have just rambled... but it's good to talk. And thank you for listening. Janey

I love your posts, Erik, you're so supportive and clever! I think we all know what a literal crap tunnel is like too...!

Hi Dizzy, I'm so sorry for what's happening with your GI issues. Intestinal problems being my main issue, I can completely sympathize, and I too get those "attacks" - what I call them. There seems to be so many things happening at once when we eat, and it's like my body is so offended by food entering it! My doctor asked me to describe the feeling and I said my GI tract felt so sensitive, like it was raw. One avenue which you might consider exploring is an autoimmune one. My friend has recently been diagnosed with something called channelography (or something like that) which means she has an autoimmune response to food and drink when it enters her GI tract. Apparently it's so newly discovered that there's no google-able research on it, but I'm definitely interested in hearing about it, especially if it might help me too. In the meantime, I think the advice people here have given you is all you can do. Have you tried compazine? (I live in the UK and here it's called stemetil) but I find it really hits the nausea and vomiting on the head. It's not a prokinetic, so doesn't help the food move through and you can still "feel" the food there - but it just wipes out the nausea so wipes out one half of your problem. Janey

This is a big issue for me and my partner. I have said on here before, he believes we should do 50/50 (and, since I have been forced to quit work because of illness, he now thinks I should do 90% of it and expects the house to be pristine when he gets home from work) but that's just not possible for me. I can hoover standing in one place without leaning over, but I get ill when i lift the hoover to get it in and out of the cupboard. I can wash up, sometimes. Making the bed I find difficult because it involves quite a lot of strength and stretching. I clean the bath while in it and the bathroom sink while leaning against the wall. I sometimes sit with a dustpan and brush and sweep up the dust and dirt on the floor, but my housekeeping is never up to my partner's standards and we have lots of arguments about it. Janey

I think it's common when someone discovers something which really rings true for them, they think that it applies to everyone and everything and they start making blanket statements about "the key to this" and "the key to that." But like some of the others on this thread, I know my problem is not a lack of positive attitude. But that's not to talk down your achievement Nauthiz and I'm so pleased for you that you're getting better and feeling good. I hope that we can all feel like that at some point and I wish you the best of luck in your continued health. Janey

This may be quite an obvious question, but it's not clear to me. If you guys get back pain/stomach pain/headache/nausea, is it ALWAYS worse standing up rather than lying down? This is the defining feature of my illness - that what I feel mildly while lying down is what I feel severely when standing up. Is it all about blood flow? I was told my constant nausea (worse when standing up) was mainly to do with having stretchy intestines because of EDS, but if it gets worse when I'm upright, sure;y it's something to do with bloodflow? Or a combination of EDS and blood flow?

Thanks for all your support guys, I knew you would make me feel better about it all. Janey