Janey

Can anyone who reads this give me a detailed description of your TTT and what happened in it? I've been reading the thread below about TT testing and feel like I didn't have the same sort of test as everyone else. For a start I was only upright for 10 minutes or so and had no meds. I have to have another one in a few months in a special autonomic testing centre and want to know what might be different about it. Do you mind answering these questions: Were you given meds before the TTT? What meds were they and what do they do? How long were you upright and how long before you fainted? What were your symptoms when you were first upright (aside from low BP and high HR?) What were your symptoms when you had been upright for a while? Did you vomit? How long did it take you to recover from it?

My doctors have started taking notice of what I've been describing as my night terrors (they're not actually night terrors in the traditional sense!) I wake up in the middle of the night feeling wired like I have taken a shed load of caffeine, dizzy, I have diarrhea (and often vomit) and am in a weird head-state. It's like my body is in the real world and my head is in a different place - like derealization? My neurologist has said this sounds like an "adrenalin hit." He's going to tell me more about it when I next see him and help me with it, but I wondered if any of you know anything about this and why it would happen? My POTS is caused by EDS and not adrenals. is it possible to have both? Janey

I know the feeling of hoping that everything has been tested for... and from the sound of it, IF there was a tumour, a CT and ultrasound would have shown SOMETHING. It was a geneticist who diagnosed me with EDS, but pretty much every doctor I've seen has checked for it. You have to have a certain score in something called "beighton criteria" if you look it up online you can check it yourself. Maybe that will give you an idea of what to rule out? I'm sure there is a test for blood pooling and would be done by a neurologist who specialises in vascular illness... deffo think you should ask for it. Janey

Just adding an extra thought here and having read Tommy's post. Abdominal blood pooling could well be the cause, as well as "delays" in digestion because of dysautonomia generally.

Hi Michelle, The funny thing about the EDS diagnosis, is that you don't have to have "all" the symptoms (or in fact any of the symptoms) to have EDS. One of the primary symptoms of EDS is joint pain and I don't have this at all. A lot of POTS patients have EDS but have never experienced an EDS symptom before they're diagnosed, or even in the course of their lives. If you have it, EDS always comes before POTS, it is the cause of POTS, as it makes your blood vessels stretchy, therefore causing them to have problems constricting when you stand up. So even if you don't feel like you have EDS, you still could have it. Are you quite flexible? Do you have quite stretchy skin? Stuff that I thought was "normal" and "everyone can do" turned out to be "abnormal" and "only me and other EDS patients" could do. My case is slightly different in that an intestinal parasite brought on my POTS/stomach problems. It turns out my stomach/intestines were already prone to being stretched/distended/clogged because of EDS, but had I not caught this parasite and the parasite irritated my EDS susceptibility in my intestines, then I would never have known I had EDS. I'm confident in the diagnosis because there is a lot of things that EDS can do to your intestines and it can create a lot of debilitating symptoms. My gastroenterologist described it and said our intestines are like a hosepipe which has been pulled really hard from both sides, creating weaker areas with thinner walls. In those areas, the muscle loses tone and ends up not propelling the food properly, causing the intestinal contents to gather at one site and build up creating a diverticulia (look it up.) This is like a bulge (similar to what you describe) until the pressure has become so much bits of the food start passing through. It causes pain, nausea, occasionally vomiting and a very "sore" feeling in the intestines. This can happen at any point in the gut, so it might explain the different sites of your pain. I also have the arterial pulsing feeling and I asked my gastro about this. He says it has a tendency to happen in EDS, especially with thin people (with blood vessels!) Obviously I'm not going to insist you fit into the EDS stereotype, and if you have pain all the way up your body that is for your neurologist to look at, not your gastro... but if it is in your stomach and intestines, EDS could well be the cause. To help alleviate the symptoms I have been prescribed metoclopramide and domperidone to ensure that food moves along quickly. My gastro has also said that if a part of my intestine "dies" from stretching then they might have to remove it. Have you also looked up gastroparesis, delayed stomach emptying and intestinal dysmotility?

Hello! I get this and have had it for years. Stomach/intestinal problems are a prime component of my POTS/Dysautonomia and they must be for you too, if you et these symptoms. Bits of my intestines go "hard" and I can feel them raised up in my stomach and my stomach gets very distended. In fact, everything gets distended! Stomach, intestines etc... My doc said this was mainly down to having Ehlers Danlos Syndrome. The connective tissue defect affects the stretchiness of the organs and makes them VERY stretchy, thus creating the distendedness. Have you been checked for EDS? Janey

To be utterly honest: It completely depends. There are occasions where I feel totally fine (as long as I have a glass of water afterwards!) and other occasions where I've been in so much pain down one side of my body that I can't move! Another factor is that I feel nauseated when I start moving around, and as the time I have sex is usually in the evening (I couldn't even contemplate it in the morning) after having a meal and going to bed, my food is not completely digested, so any form of movement/exercise causes it to come back up again. The WORST thing comes when I can't get lubricated "down there" even if I'm ready for it in my head and my energy is up to it. I blame that on POTS too... Anyone else think it's to do with POTS? Janey

I'm like KitsaKatsa, nothing hits the nausea where it hurts better than compazine... if you can let us know what you've tried so far, I might be able to help with alternative pills? Janey

When I was younger (and nobody knew I had POTS) I used to tense my muscles all the time until I shook because it make me feel good. People thought it was very weird, but it just explains my orthostatic hypotension. I also get that stomach feeling too! And pushing in at the waist always helps! Janey

I've had a terrible day. I went to one of my cake sales. They told us there were going to be heaters there, but there weren't. I sat in the freezing cold for five hours (with my POTS lack of layers on - I'd predicted the heaters would be making me sweat.) Anyway, I started to feel worse and ended up passing out when I stood up in front of everyone. I'm at home now, lying down, feeling awful. I grabbed a bag of crisps and ate them in one go to try and get some salt. I thought the cold was meant to raise BP? Is it because I have an autonomic disorder that my body doesn't react to temperature like that? I've never worried about being too cold before. And now I just can't warm up. I have the fire blazing and the heating on full blast but I'm still shivering. I feel so nauseous and my body is in pain. What can I do? Janey

I have the opposite problem to you. My partner is obsessively clean and I am a real slob. Since I've been ill I've gone from a real slob to an *uber* slob and haven't been able to do very much housework. This has lead to my partner being very angry with me and has almost led to our break up. He would understand your annoyance, so maybe you need to talk to him! I can understand where you're coming from though... i don't know why I'm not a tidy person who likes doing household chores, but I just don't "see" mess. There is no little voice inside me telling me to clean something or tidy up! I'm sure your partner doesn't do it intentionally, and you have to not take it so personally (this is what I say to my partner!) - "Just because I'm not tidying up for you, it is not an insult or a reflection of how I feel about you!" Janey

Hi Laura, This isn't an immediate reply to your last question, but I just wondered, are you based in the UK? A few other POTS patients and I had a really hard time getting diagnosed in the UK and were dismissed countless times as hyperchondriacs. I have the email addresses of some POTS specialist Professors in the UK who you could discuss your symptoms with over email. They are aware that it is sometimes pointless going through some GPs because they don't naturally diagnose dysautonomia as it is so rare. Janey

Hi Maxine, Really interesting to hear about your experiences with doctor Grubb. I'm totally here for you if you need to talk about anything or just complain about any gastro troubles or EDS issues. I've been meaning to send you some research on EDS and gut problems which my neuro-gastroenterologist sent to me the other day. Do PM me your email address if you'd like to read it as it's very interesting. It sounds like you have a great team of doctor's around you and unfortunately I can't offer any advice as I'm just starting out on this road myself and have no idea what to try or do next. But just wanted to let you know I'm right there with you! Janey

I've been doing some temporary work dogsitting, fostering wild animals and baking cakes and muffins to sell, just to make a little bit of money. It makes me happy, so that in turn helps my dysauto. I'm not making much money, and my partner is still paying for our house, but I feel much more content than I have done in a long time. I have two big cake sales coming up - one from 9am-11pm one day and another on Thursday. I've asked for a chair and will take my pills along with me just in case. I'm working hard towards these, baking on a stool in the kitchen, and it's so nice to feel that I can still 'create' something. Anyway, I woke up this morning with bad POTS and a migraine. My tachy was worse than normal and my head felt like it had been cracked open. I was dizzy, nauseous and my vision was blurry. I phoned the people whose dogs I had to sit this morning and told them I'd be a little late and could the dogs be left for another hour? They were fine with that. Then my father came round, as he often does, to drive me down the road to get the dogs and I told him that I was feeling awful and couldn't go just yet and could he help me by getting a couple of things from the pharmacy down the road? When he arrived in the car and got out, I was sitting in the window and I could see that he saw me still in my nightclothes and rolled his eyes. He came in and was so disapproving and angry at me, not just for not being able to start my day, but also for the things I've been doing - "which aren't going to make you any money." He said that they were just "distractions" to "get out of having a real job." I tried to explaining to him that I would jump at a proper job if I was well enough to get one, but he just doesn't understand and belittled the very things that I was managing to achieve. I think he and my mother are in denial that this is my life now. They treat me like someone who has disappointed them and is scrounging off the government because I'm too lazy to work. I don't claim any benefits and never have. I wish they would just leave my life alone and let me get along as well as I can without the feeling of having dashed people's expectations, disappointed them, or made them not proud of me. For some reason the tears always come easier when I have a migraine and eye pain, and today they just can't stop flowing. I just feel so sad on such a deep level that I cannot communicate how I feel to anyone. My partner would usually understand, but he's currently away in Asia for a month over christmas, so I can't contact him. I know none of you can help, but it's just nice to have some approval sometimes, y'know?

Yes.. apparently when you body decides to go into "retrograde propulsion" this can happen. It's when your GI tract starts pushing its conveyor belt the wrong way.. it' a symptom of dysautonomia. And I get it too! Gaggy!

I really want to take back-to-back contraceptive pills, but I just get my period whether or not I take them. My body just takes over! So glad to hear you all get the same. It's good news for me, because I used to feel out of control of my crashes.

I haven't noticed this before but I've been keeping a diary of my crashes recently and I had a big one today. I looked at the diary, and every crash seems to start on the 20th-23rd of each month, EXACTLY when I start to get PMS. And I'm not confusing POTS with PMS symptoms, they are very different, but I haven't been able to get up all day, food's not going down, I'm dizzy, my chest is heavy, I have a lump in my throat, I'm sweating, bloated etc. Does anybody else get this? And does anybody have an idea why menstruation would make POTS worse? Is it to do with hormones/blood flow? I'm so pleased at this revelation because if it's true, it means I can PLAN my days so much better and not book things from 21st-27th of each month! Janey

Hi Jana, I haven't.. what sort of things can they diagnose through that? Janey

oh, and sweating of course!

I also get a big lump in my throat and diarrhea... recognisable to anyone?

I mostly get this in the middle of the night when I sleep funny or when I'm too hot, but today I got it after waking up then falling back asleep again on my left side. As I fell asleep I could hear my heart get really bradycardic... very slow, and felt a very strong slow, irregular pulsing in my head. Weirdly it was making my eyes see funny things while I was closed and I had a very bizarre dream like I was high on drugs. Then I wake up... and my head is spinning... I feel nauseous, I can't stand up. Much worse than usual. I mae it downstairs and try to pour out my water and make some breakfast but I can't complete it. It's like if you're drunk and your head is just spinning round and round. Do you think that this is the result of the funny sleep position/episode and therefore the bradycardia and therefore some sort of chemical imbalance? Do any of you get this? Janey

Totally understand in this situation and you have my deepest sympathy. There are people around me too who think I have adopted an "ill" or "victim" persona because I've got nothing better to do with my time. How horrible to be so disconnected from your mother? Although I suppose it makes a big difference when you have a great family of your OWN who are there for you and support you. Like you have said to me in the past on here - you've just got to be around the people who understand and that's what makes it work. Forget about those whose compassion can't reach that far and there'll be a day, hopefully, when they will understand. Janey

Yes, I can completely relate to this 100%. Especially the "he is depressed BECAUSE of the pain." That's exactly what happened to me, and especially during the time before my diagnosis when nobody believed that there was anything wrong with me and I was so depressed because I was hurting so much! Now that there's a 'name' for it, I feel more justified and that I don't need to be as depressed anymore. What was the conclusion of the episode? Did they cure him? Janey

Hi Anna! I saw him on the NHS! How did you hear about him? Does your boy have EDS/HMS or do you suspect he is hypermobile? If so, you can get a referral to Prof QA from Prof Rodney Grahame, the geneticist. Would you like his email address? He is very responsive via email. Janey

You are SO right about the "little baby's fist" poking into your side! That is exactly the way I feel too, and also on my right side. I know that, that part of the intestine is a difficult piece of bowel (I think I read somewhere that food has to turn a proper corner in it and it often gets a chink in it) and so it's no wonder we are getting diverticula there. But I'm right there with you on the baby's fist on the right side! My GI doc was also really palpating my abdomen and said that he could "feel" the problem on the right side. Apparently you can also "feel" healthy bowel and not-so-healthy bowel through the skin of the abdomen. He must be a real expert to know how to do that! If you don't mind telling me, what sort of smell when you have gas? Mine is always deeply rotten eggy, but occasionally has different, very odd smells eg. a burning smell sometimes! I always wake up with a metal taste in my mouth and if it's not metal, it's acid. Ergh. Janey