Janey

Firewatcher, thanks for replying, and thanks for saying that. I have such a hard time adjusting to the thought that I have a sort of "disability" and I know that my family and friends would laugh at the announcement that I need someone to go and get my groceries for me. They really don't think I need it and call me the "Queen" (as in I think I'm too ill to do some things..) As they're unwilling to acknowledge the extent of what is wrong with me, it's going to have to be a decision I make for myself. It just feels so undignified for a twenty-something to not be able to fetch her own shopping!

janey

I tried to go to the grocery store this morning, it's just down the road, about 100 yards from my front door. I had a tall glass of water when I got up and my salt tabs and was going to buy a couple of eggs for breakfast as well as lots of veggies, fruit, soya milk (heavy stuff.) I walked down to the shop slowly (no hills) and by the time I got there I was dripping with sweat and my head was thumping (head pressure etc). I got into the shop and started piling food into my basket and as it got heavier my arms started shaking and being painful, so I could no longer carry it. I started pushing it along the floor with my feet. I started to feel faint from standing up so long in the store so had to go into a deserted corner and compose myself by putting my head between my legs. I started queuing up feeling awful, paid for the goods then had to carry the three (mildly heavy) bags home. Well, it took me about 45 minutes to get up the road, inbetween pausing to put my head between my legs, thumping headache, sweating, aching wrists, arms, hands, aching joints in my feet. And since I've been back I just feel like going to bed again. I want to lie down, but I have to get on with the day.

Do you think it's ridiculous to ask for help with this? Or as I'm "managing" so far, will it get better and my body get more practiced at it?

janey

This is really helpful Maggie, I always get SO nauseous when I go to the Opticians.. it must be because they use this stuff on me.. Ugh. No more!

Janey

I take the birth conrol pill Yasmin (different name because I'm in the UK?) Is this what you're referring to? If so, it explains a lot!

Janey

I had lots of problems with NHS funding to go and see him, but I took an outpatient appointment with him and had a tilt table test and was diagnosed with POTS. I've also seen Professor Grahame and been diagnosed with EDS. However I have to have more autonomic testing with Mathias (I'm on a waiting list which is a YEAR long) and I was just wondering what it entailed?

Janey

I'm wondering which UK (or abroad?) members of the forum have been to see professor mathias at Queen's Square, what you thought of him and what tests he performed on you?

Janey

Thanks v much for the cross link Erik.. it is rather scary about the aorta thing, though hate to feel like a hypochondriac. i think I'll ask my EDS specialist about it..

Janey

I'm still young (in my twenties) but just cannot imagine having a child with POTS/Dysautonomia. I find my life too hard to cope with already, I don't how I could add a child to that mix? I've barely got what I need, so I just can't justify bringing something else into the world whose needs would be far greater than mine are. I think my life will be so much easier without kids. It's sad but true. I think if I were rich and could bring it up from an outstretched position on a sofa while someone else did all the physical stuff, then I would maybe consider it!

Janey

Hi Guys, you've probably already seen it but a nurse-friend sent me the link to this handbook. After reading through it I sent it on to my family and friends to help them understand what I'm going through. It has really helped me to read it.

http://www.ndrf.org/NDRFHandbook.htm

Janey

Hi Daisy.. this is really interesting. I can see how it would be possible, but the only personal experience I have to contribute to it is the fact that EVERY time I go into a department store, my sympathetic nervous system seems to take over. I sweat, get palpitations, and sometimes get incontinent (bowel and urinary.) I can only attribute this to sympathetic nervous system stimulation which could be due to magnetic fields/lighting/sound or something like that?

Janey

Thanks for all your answers guys, so helpful once again. I will try alternative laxatives before I decide that laxatives and I don't mix. It's sod's law that I'm constipated and in pain for most of the time, but as soon as I take a tiny bit of a laxative I have uncontrollable diarrhea and vomiting!

Janey

I am sure there must be a genetic link. My Grandfather has continually fainted upon standing his whole life and it's only since I was diagnosed with POTS that we realized what he has. He's in his 90's and profoundly deaf now, so cannot be communicated with so we can tell him!

Janey

Goodness, how awful for that family, those poor girls. I'm rather confused about what happened.. did the aorta rupture? Could all us EDS-ers be prone to this?

Janey

I really feel for you. I've had the same problem as you, although my partner doesn't tolerate me not working no matter how ill I am, even though he could afford to look after both of us on his salary.

I've found that the way to manage it is to plan, plan, plan:

1. Get a job as close to home as possible, preferably in an office where you can sit down all day and put your legs up on a box or stool under your desk if that's possible.

2. Minimize travel: Work out how you're going to get to work and back every day and how long it will take. Plan the easiest time to get there and leave, even if it means working a little bit at home to show that you are still working even if you get in a bit late or leave early.

3. Plan the food you are going to eat each day so you don't have to worry about what effect it will have on you.

4. Prepare your clothes for the whole week on the weekend, don't feel that you have to wear a different thing each day. Do clothes washing at the weekends or ask your husband to do it.

5. Find cheap childcare. Easier said than done, but maybe amongst your friends there are a few people who could cart the children around to where they need to go and look after them? With the extra income you may be able to afford to pay someone?

6. Pay a cleaner to come in once a week for a couple of hours.

I know this is all easier said than done, and despite talking about it, I haven't managed it yet. Although the weeks that I do manage bits of it, it certainly makes life much easier for me.

Janey

Well I have bowel problems and gastroparesis and I heard that the new Doctor I'm going to see for my gastroparesis recommends taking a laxative everyday. Stupidly, I decided to follow this by myself without waiting for the appointment and took a senna laxative last night. Turned out, it worked, and it was okay this morning, but every bowel movement I've had today feels like it's emptying me and now I can't stop being sick. What has happened? I feel awful.. dizzy, vomiting, nauseous, mega, mega POTS attack.

What have I done wrong? Has anyone else tried this?

Janey

One thing that Professor Grahame told me (the European Ehlers Danlos Expert) is that people with Ehlers Danlos Syndrome do not get numb-enough during injections at the dentist. They sometimes need 3 or more injections before their mouth feels properly numb and this is something to do with collagen. This is one of the first questions he asked me as I walked through the door. I couldn't read on the bottom of your page whether you had EDS or not, but it could be that it's a autonomic thing and just an aspect of dysautonomia generally for dental anaesthesia to have a lesser effect.

How annoying that she suggested it was stress! That INFURIATES me!!

Janey

I get nausea a lot but vomiting very rarely. The nausea is REALLY extreme though (to the point that I can't move), so I might as well be vomiting. Obviously these things come from the same cause and I think the nausea/vomiting is just a sign that your whole body is out of sync (like you said.) You know how you can wake up after 8 hours sleep and feel like you haven't slept a wink? I think the same goes with the fact you can eat a couple of peas and feel like you've been at a banquet. Your body just isn't regulating properly. You can be giving it everything it needs but if it doesn't recognize those things or process them properly, you're not going to feel good.

The nausea is the worst part for me because it really inhibits me, socially. With POTS as long as I make sure I've taken my salt tablets, drunk litres of water and am sitting or lying down, it's okay. But with nausea - sometimes you feel so sick that you don't even want to speak to people (and that includes my family and friends.) I feel like I need to be constantly aware of whether I need to run to the bathroom or not, so conversation is out of the question.

I'm just checking if these are normal symptoms of POTS, I haven't discussed them with my POTS specialist yet.

When I'm having a POTS and Gastroparesis flare-up that big artery in my stomach really throbs and the skin on my torso goes up and down with it. Everything feels really tight and when I put my fingers on it, it feels stronger than I've felt an artery ever before. But right now, when I put my fingers on it, I can hardly feel it and I feel okayish at the moment (never 100% of course!) Do you think this is a bad thing or just another symptom of POTS?

When I lie down I also feel the blood pumping out of my legs. Does anyone get this? It feels like it's one of my big thigh muscles twitching, but it's definitely not, it's a strong pulse in my legs pushing blood back up into my body once I'm horizontal. Do you all get this too?

Janey

Oh Erika, you poor thing. This looks like one of those moments where everything is just completely rubbish, and I know those moments well, especially when you know your dysautonomia is only going to get worse with less sleep/more stress. I am right there with you in feeling this. But if you try and plan to take some time out for yourself tomorrow to get back in control of the situation, to work out a plan about what you're going to do/say to your boyfriend and how you're going to deal with this unruly tenant, it may calm you a little bit now. Just let all your stresses go for the moment, put things aside, know in the light of day you'll be able to do something about it, and hopefully the dysautonomia phase will have passed by then.

I understand about the boyfriend, I'm not in the same situation with the dead wife, but feeling a lack of commitment just at the time when I'm so ill and I just want someone to say "Don't worry anymore, I will look after you, just relax." No-one's going to do that for me though, so I keep struggling on!

***HUGS***

YES, not sure how much detail you want me to go into, but every time I have a POTS attack (when it's really, really bad) I get brown urine with an inch of white silt in the bottom. I've been told it's catecholamines (spelling?) or calcium or sodium. They're still testing it, so when I know what it is I'll let you know. I get a lot of bizarre vaginal discharge during POTS attacks too, but my POTS doc doesn't really go into that with me at all, so I just put up with it. I've had all the tests for infection and nothing has come up. My sweat is also occasionally tinted brown (a sign that is currently fascinating my neurologist) and smells awful. So yes, I have the kind of thing you're talking about...

My partner got up at 3am this morning for an early morning flight, he's done this before, and every time I wake up (he puts the lights on, gets in the shower etc) I get really strong nausea and dizziness exactly like having been in a car too long and being terribly travel sick. Even though he turns the lights off and all goes silent when he leaves, I lie there practically clinging to the bed trying not to throw up. Obviously this has only happpened since getting POTS, so it must be something to do with it. And if I manage to sleep the night through, I won't get it. It takes up to three or four hours to go away even if I manage to drift in and out of sleep after it's started. What is this? Does anyone else get it? And what do you think are the mechanisms involved? Maybe if I know these I might be able to stop it happening>

Janey

- Salt always made me feel better

- I always sat cross legged

- I knew I wasn't a "runner" and so NEVER ran

- Lying down seemed to be the cure for everything (made me less anxious too)

- went into the mellow "inside yourself" state that overrides all anxiety and moodswings but makes you seem pre-occupied and unavailable to other people. Friends and family used to (and still do) call it "the vortex."

- I would always much rather sit down than stand up and irrationally hated those people who would tell me I needed to go and "stretch my legs" or "get some fresh air."

Great topic!!

I am exactly the same, in fact, I had it today too. When I went to see prof Mathias, he told me that the vision shifting with every heartbeat was very typical of POTS. I get it a lot too, especially when I stand up/walk around.

You'll read on my post here today too, I tried to do Pilates this afternoon and ended up a shaking, dizzy, nauesous, visually-disturbed wreck! It is so hard, but I know I've got to keep going...

So I tried the "simple pilates" regime I've been put on, just ten repetitions of each movement/position, and it was ****! I know, just ten, you think "that should be easy!" but it just wasn't. By the end of it I was shaking, nauseous, dizzy, had a headache and my intestines had started cramping. It's been a long time since I exercised but I didn't realise lifting my leg up 10 times in a row would give me a full-blown POTS attack. It's put me off doing it again because I don't want to feel like this every day, especially if it takes me about two hours to recover. Have any of you done Pilates and found it has helped with symptoms? If I keep doing it, will it get better?

Janey

You've hit the nail right on the head! If a man was having this it would be a "serious problem" but because we're having it, it doesn't matter. So annoying! My boyfriend sees it in the same way - he'd be much more sympathetic if I had a penis and couldn't get it up.

Janey