persephone

Thanks for this Tea- you are an inspiration

You've never fainted? Wow, you're lucky!

I get this too. Sometimes it's junctional rhythm; sometimes it's a premature ventricular contraction. I've been told it isn't anything to worry about. But it feels awful when it happens!

I have a contrasting opinion to most. My grandfather was put on it for postural hypotension and suffered a serious heart attack; his potassion level was half what it should have been. If my mother hadn't taken him to the doctors when she did, he'd have died. As long as your potassium levels are monitored- whereas my grandfather's weren't- you should be ok.

I've been told by a leading Rheumatologist that there IS a connection between EDS and aortic dissection. In fact, they thought I was having one last summer when I got admitted to hospital for 7 weeks, tho it turned out to be a false alarm. I also have EDS III rather than IV.

Hello Jenn! I was in your position too Epogen was a last resort, but it has helped me lots. Hope it works for you too :-)

Hi Dizz! The ringing might be tinnitus- I get this too- and sometimes it really is loud, drowning out other stuff,But I think it can be a part of presyncope to get ringing in the ears- like, just before you faint your ears can ring? I get it more when I'm tired- at night and in the morning. I find keeping the tv on or the radio for some background noise helps. I wonder if this could be what you have? Get better soon love! xxx

I swear this drug is turning me into a YOYO. I either feel super manic and like I could take on the world- to the extent of waking up wired at 4am and heading to the gym for it opening at 7 am... OR tired, low, unable to move. To be honest, I'm a bit frightened it might be turning me into a manic depressive! Does anyone else feel REALLY intense on this drug? It helps my pain a lot, but I know that I am just not quite myself, too.

good for you, Tearose, working towards the answers- keep going, don't give up!

Hello! I take it for its vasoconstructive effect- to raise my bp. It made me go from this to this in a matter of weeks

POTS doesn't happen after heart viruses. It's normal to have fluctuations. The more you look, the more erratic your readings will be- it's like biofeedback. My lowest hr recorded is 17bpm and I am still here to tell the tale! relax.

Hi! Haven't had the vertigo type thing that you describe, but during neurological exams if I close my eyes, I can't stay standing up- I just flop. It's not dizziness though- I don't know how to describe it. More like I slip into a blackhole or something. I think it is definitely possible to get deconditioning side effects. I am forcing myself at the moment to sit bolt upright in the library at least 3 days a week- without reclining at all during working hours, and I'm discovering that the more I do it, the more I feel able to do it, which is really good. Have you thought about getting a set of pedals that you could use in the house? That would strengthen your calf muscles without you having to worry about balance when on a bike, or having to even get to a gym. I had a set of these in the hospital one time when my muscles had begun to waste as I'd been lying down so long- they were really good. I'm tempted to try and get some again now as I'm not up to riding a bike just yet. As for the shower problem- could you get a chair for the shower, would that help? I can't stand up in the shower, and my shower at college has a chair. The one at home though is a shoewr over the bath, but an Occupationla Therapist at home gave me a plastic board that goes across the bath and which I can sit on if I'm too wobbly to stand. It does help me hugely. It's such a simple idea- have a look online, I'm sure it can't cost that much if you have to pay for it (luckily mine was free) Good luck, let us know how you get on!

what are charlie horses?

I *always* wake up exhausted. Unless I take a double dose of Cymbalta which makes e go manic- and I *mean* manic, as in wake up at430 am unable to sit still or stop talking/thinking moving. It my sound good, but it makes me pretty unwell. Anyhow, back to the topic in hand- yep, I find it absolutely impossible to get up bright and early I always used to be up and about for 8-8.30am. Now I'm forcing myself out of bed for 10. And I mean FORCING. I think a lot of it has to do with the winter for me- I have anew lightbox which helps a bit but I find the darker, shorter days make me even more exhausted. I think mood can have a lot to do with it too, although now, unlike last year, when I open my curtains in the morning. I feel excited about what the day will bring rather than scared and anxious about where I'm gonna faint next! The water spray is brilliant. I should do that, but I expect I'd still just curl up into a wee ball!

Hey Lauren, are there chairities near you that could offer financial assistance for living costs like rent and helpers? A friend of mine got helped by a charity set up just for people in your sort of situation, but this was in the UK. Maybe google search charities for the disabled in your state and take it from there? It may be hard, but could you sit your folks down and tell them how hard all this is for you and how much help you really need? Here any time you need me, hen.

what a funky story! thanks for sharing

Thanks chuck!

So have taken my first Provera pill, only 5mg but man I feel sick as a dog, it's 3.30 am and I can't sleep. It's like pins and needles and broken glass in my tummy. I notice it says "sickness" is a "possible feeling" in the very VAGUE leaflet accompanying my prescription. Anyone else find this med did weird things to them?

I met a lady from your neck of the woods last year when I was in London seeing Mathias- she wasn't called Diane, was she? And Becky, don't make me blush, hen! We all know *YOU'RE* the inspiration, hen! xx

I woke up this morning feeling exhausted after 8 hours of sleep. I stood up and didn't get tachy that I noticed but I feel really odd- my eyes are stinging and I my vision was really, really blurred this morning, to the point where I was seeing double. Does anyone know what could cause this? Or get this?

I get this often. Almost always, in fact.

Hello TYKA! They can test you for fibrmyalgia by touching parts of the body which are identified as 'trigger points'- they hurt more in people with FMs than normal people. The person you would do best to see is a rheumatologist- that's who diagnosed me anyway.

Hi Tea (and everyone), It's strange but since I got back to Oxford, my joints are heaps better. My wrists are mainly where it's at- they hurt the most, but this is great compared to not being able to get out of bed for most days in the past week. I went on a two hour walk this afternoon and I'm going to try the gym tomorrow. We shall see! Hope you are all well

Thanks Michele! I think I'm having a bad flare because of my new year trip to scotland- I could feel it coming on then- it was so cold and my joints just haven't recovered since. I was also doing loads more walking than I really felt I could manage- but had little choice, so I guess I'm feeling the payback from that It is so weird though- it's like the cymbalta has literally stopped working over night, after 2 months of absoultely brilliant pain relief. I don't think I have ever been so foggy headed as I am now. And of course, my anxiety is making it worse- "why have I flared? what have I done wrong? what if I'm STUCK LIKE THIS?!" etc etc But I am going back to Oxford- I'm biting the bullet. There's nothing else for it... Thanks for your replies though...

Do many of you POTs folks also have fibromyalgia? I am in agony with it- can barely type or stand.Definitely feel like the tin man from the wizard of oz I don't know what I can do to help myself- am off all forms of codeine just now, and the cymbalta has suddenly just STOPPED taking the pain away- it worked flawlessly for 2 months and now has just lost all efficacy. I think the cold and damp weather has a lot to do with it. Do others have any tips? I'm meant to be going back to Oxford on Saturday but the truth is, I can't walk 100 yards right now, I'm so sore. Even lying curled up in a ball in bed is hurting me HELP!