persephone

((((((((((((((((((((((((SUE))))))))))))))))))))))))))))) I'm so sorry for your loss. Sue, I can be your friend- I know it's not the same as if I were there in person, because I'm in the UK but I am always at the end of an email or phone and I want you to know you're not on your own. It's good you shared all that loss with us. Sharing is the first step towards healing. I hate the holidays too because Christmas only ever reminds me of who is missing, who is not there but should be. I identify with a lot of what you're saying. You sound like such a loving sister and daughter. I live my life for my family too- and my focus has always been on my parents and my brother. I too am terrified of life without family, because I feel a lot that they are all I have. Send me a pm if you want to chat more and I'll send you my email address and number ((((((((((((((((((((((((((((HUG))))))))))))))))))))))))

Are there any more theories about connections between POTS and the kidneys? I never used to have trouble with my kidneys. I've always been one to drink a lot and wee a lot, but now I've just had my 2nd stone in 11 months. The pain was horrendous. I am only in my 20s! my bloods give no clues about why this is happening. I wonder if my kidneys are irritated by my super high salt diet, the EPO I take, and all the gatorade I drink? My Gran had low bp and kidney stones...is there a connection, do you think? Curious to hear others' experiences.

Yep. I'd say that was a migraine

Hello! Did you have a headache at all before this happened? PAralysis and loss of speech can happen with a specific type of migraine. It's called HEMIPLEGIC migraine and usually involves an inability to move one side of the body, but in my experience you can be unable to move both sides. It's possible to have this without the headache as well, but it would certainly explain some of what happened to you, as it is often accompanied by altered consciousness, varying from confusion to profound coma. Have you got a neurologist? Wonder if it would be worth mentioning to them. Hope you get answers!

For everyone who tries stuff and has it not work, I suggest EPOGEN injections. They are expensive but I had tried everything else known to man just about, and they helped me more than anything.

I get it too. I'm 28. I'm half way through a PhD. when I'm well, my mind is razor sharp- for the passt 2 weeks I've been working like a trojan and ploughing through my studies. Then yesterday I ran out of spoons, and now am struggling to read a page. It's a cruel ailment because, like POTS in general, it's invisible. I worry that people expecting work in on schedule from me, such as my supervisor, might just think I'#m lazy, or can't be bothered. Even when I tell her I'm sick/not reading well, I worry that she might think it's just an excuse. It's awful. I don't know what to suggest. All I know is that when I'm free from pain and my bp is OK, my mind goes at a rate of knotts and I can overtake my healthy colleagues. But when I'm not OK, work grinds to a halt. I've had to take over 18 months off of my PhD in total. I should have been finishing this year; instead I'm only half way through- luckily my scholarship dictates that time taken off in the middle is added on at the end, so I still in theory get the same length of time as everyone else. But really, there is something very soul destroying about taking time out and not being able to work which is the one thing I love when I'm well. Every time I withdraw on health grounds, it gets a little harder to come back.

Hi Janey! Let me know if you'd like to meet in Oxford over the next couple of weeks (this week is horrific, andnext week I'm out of town) but the week after that, starting the 8th of November should be good. Would be nice to meet a fellow POTSy iin this kerayzee town and catch up with you

YAY ERNIE!

Futurehope: possibly the most inspiring message I have seen in 5 years of DINET. Thanks for sharing. You should write more often.

Hi Tea! I hope you are doing ok this week. Well everyone, I am in the hit by a bus category too. I wake up feeling HIDEOUS. I never used to have problems with getting up for high school at 7am, but now? Well, now I take over two hours from when my alarm starts going off, to when I can stop hitting the snooze and know I will stay conscious. Doesn't matter what time I go to sleep- last night it was 10.30pm. I still couldn't move before 8.30am today. I feel achey, dehydrated, hear traces because of the noise of the alarm. I am very tremulous and shaky. can't face breakfast- feel nauseous. Tingly all over- generally, uncomfortable. Because I am acutely aware of how long it takes me to get moving, I begin the day with thoughts of "I should have been up hours ago...and I have all this work to do!" This week, I'm working in my room in College rather than the library because I am achey- that fibro way- and know that I need to lie down. I am lying completely flat now as I type this and I'm STILL HURTING I am working onj manuscripts at the moment, but THANKS BE TO GOD I have a facsimile- a reproduction, like a posh photocopy, of the main manuscript I'm working on. I guess it's lucky I'm in my own room and own space because the swine flu is RIFE in Oxford- every time I go out of the door I ammet by people coughing, sniffing and what not- note that NONE o these people have tissues or hand gel. Grrrrr! Sorry- have gone off on a tangent, but, yep, I feel crappy in the mornings. I always do at this time of yar. I wonder if lack of light has something to do with it because this is not a problem for me when the sunrise is before 6am, in the summer time and late spring. More importantly though, does anyone know how to get rid of the feelings of crappiness? p.s: I will write an account of my trip to the US soon- but it's going to need time because there's a lot to tell you all. In short though- Harvard = AWESOME!

I think Lyme is possible in places like the New Forest and the Highlands. There were certainly ticks when I was in the North West in August - I was terrified of being bitten. I should say I've never been tested for Lyme because of the EDS. But I do wonder if there are a lot of people out there with Lyme AND EDS causing POTS

Hi Noodlemaster, I'm in the UK too- where are you? I live and work in Oxford. It certainly sounds like POTS to me. We know that severity can fluctuate quite a bit, so I dn't think the fact you aren't completely incapacitated should rule out the possibility of POTS. I would suggest you try and get a referral to Professor Mathias now. I did this when I read up on POTS and realised I had it; he confirmed my diagnosis the very first time he met me. There are loads of treatment options if you feel you need them. Do definitely seek out the tilt test. Something else to do is make sure they use very specific equipment for testing your blood pressure. Regular cuffs with go around your arm can only cope with a certain range of blood pressure readings. If you fall outside of them, the machine will simply keep trying to re-inflate, or it will just come up with an error reading. For years we thought that my bp wasn't dropping and that it was just my heart rate shifting, because that's what the ordinary machines seemed to be telling us. At my last tilt test, however, a different type of monitor was used called a port-a-pres monitor. It looks a bit like one of those machines they use for testing your blood oxygen levels- a SATS monitor, because like that, it sits on the tip of your finger. However, it is not the same. It measures your blood pressure continuously, with every single beat of your pulse. It shows up on the screen like a continuous ECG, only for blood pressure instead. It even has a peak and trough to show systolic and diastolic readings. When I had this, we discovered my blood pressure was flatlining altogether- the systolic was disappearing to 0. But it was happening quite transiently- so transiently that a short episode could be over by the time a regular cuff had reinflated a few times. In any case, it showed stuff that had never, ever been picked up on before, and helped explain a lot more about the mechanisms in my body that were going on due to POTS. I hope you get some answers and treatment soon. Meanwhile, lace your food with salt and take extra fluids to keep up blood volume- see if it makes a difference Let us know how you get on Persephone

Yo Amy, big hugs to ya when you read this! I am thinking of you and wishing you well.

Happy Birthday Flop! Flop is a word used in the UK to describe something falling down or being unableto stay upright.

Aw bizbiz I'm really sorry. animals can provide such a special bond, can't they? At least your little feathered friend isn't suffering any more. I think birds are like cats- you don't choose them, they choose you. My friend had a cockatiel called George who most definitely didn't choose me. He used to divebomb my head every single time I went over to her place when he was out of his cage! Your bird sounds lovely and gentle- a great loss

Is it just a deficiency or is it pernicious anaemia, which is about the body being unable to absorb B12 normally? If it's the latter, you need some kind of special B12 shot- I know because a colleague of mine has this problem. I know that before she discovered she had pernicious anaemia, and before she started treatment, a lot of her symptoms were very pots like- hideous hypotension, tachycardia, weakness, the works! but the injections sorted that right out. If only it was so simple for us POTS folks to get fixed!!!

Thanks ladies! I should be ok with the BYOB as I'm tee total, I don't drink at all now. I'm also vegetarian so the seafood won't appeal to me but my DAd may like to give it a try,though THanks for the tips on tips (ha ha!)

To be truthful, I'm not a fan of mushy peas! Do you guys have salt and vinegar crisps? (I think you call crisps potato chips. What we call chips, you call fries). Funny, these differences, aren't they!!!

Thanks Yeah I'm not coming for medical help- I'm giving a paper at a conference Excited. But terrified! I'll remember the excuse me thing. Over here, people say "EXCUSE ME" when they're mad at someone...

Just bumping this to cheer everyone up

Hello from another UK person. Prof Mathias told me, if he could prescribe Walkers Salt and Vinegar for me, he would! That's how I get my sodium

Hi everyone. It's not long now til my trip to Harvard. I've never been to the USA before- can anyone give me any useful hints or tips? What sort of tips do people give in restaurants or at the airport (I'm getting wheelchair assistance) Any other points of etiquette you could let me know about that I may not already be aware of? Thanks P x x

I get this a lot. Because my PhD is on literary representations of dreams and visions, I find that I get this kind of meta-consciousness that you're talking about. In that, I *know* I am dreaming and am able to comment, "This is a dream, I must be asleep"but I am still fully immersed in whatever is going on in the course of the dream. It's weird but true! Also kind of cool, except that I work on dreams all day, and then feel a bit like I sometimes work on them all night too!

Hi Emma. Nice to find another UK person. Keep us posted.

Avoid the make up, and keep taking antihistamines. Perhaps some hydrocortisone cream could help the inflamed skin but I don't know if you're meant to use it near to the eye. Do you get headaches too? My left eye waters when I get a certain type of migraine. It's also possible to have a migraine where your head doesn't hurt- I am wondering if you get any kind of vissual aura, nausea or othher symptoms that could fit the pieces of this puzzle? Hope it gets better. Maybe an ophthalmologist who does regular eye tests could give you some advice- they're very knowledgeable people. I used to work as an Optician's assistant before University and it was amazing the stuff that the optician could tell from someone just by looking at their eyes- they can even tell whether or not you're taking the contraceptive pill!