persephone

Go Kim, that's awesome! Lauren- I'm so sorry you're feeling bad. And Linda too! Biggest hugs to both of you. Lauren and Linda- can you email me or pm me your postal addresses? I have something in mind that I want to send to you both...

Hi Liz, I had this done 3 years ago. It's a short test they do for Addison's disease which can cause some symptoms resembling pots. If I remember rightly it's a couple of blood samples a few hours apart after you receive an injection. It's nothing to worry about.

Hope you are well! I was in Scotland last weekend- took my mum for 4 nights at the Caledonian Hilton in Edinburgh.

So pleased for you- what terrific news. Glad you had a good time

I am definitely slower- my word recall and memory are badly affected when I'm in a flare. My greatest source of frustration is knowing how sharp I used to be, and how fuzzy I am now. But people can make adjustments for us, and we can still succeed. Brainfog doesn't need to stop you attending school- mine are now making big adjustments for me and I'm on my 3rd degree.

comes and goes, is worse when i chew food. haven't brushed my hair for days (not as bad as it sounds- my hair is short!) It hurt to shower this morning cos my scalp hurt

My left temple is the epicentre of this headache, so it's sore even without anyone touching it.

That's all. Drop us a note when you're up to it. Thinking of you.

I had never heard of this til today but apparently it is linked with connective tissue disorders like EDS, since it's a form of vasculitis. Anyone got any experience or thoughts on this?

I've been getting a headache for 6 days now. It comes and goes- but when it comes it's right on my left temple, over my left eye, down into my jaw and my neck. It hruts more when I eat anything or even just drink water. My neck and shoulders are aching too. Over the last week I've had joint stiffness (severe), sweating (I am usually cold) and I've noticed that the pain gets worse in my head if my pulse beats harder- it's like a man is in there with a peumatic drill!

Any thoughts appreciated. Can you imagine the fun of trying to write up a thesis like this? I can't even leave my room today. Though I have managed to have a shower and get dressed. It only took 4 hours!

cheeky buggers. tell them to sod off!

Hello! I get this most times I eat. It's related to postprandial hypotension in me- because more blood goes to my stomach to digest my food, my bp drops, which makes my heart beat harder to comepnsate. Could this be what is happening to you?

I'm getting some extremely forceful PVCs and PACs at the moment - over the last week my pulse has been really, really fast and irregular.

Let us know how you get on with the medics

Becks! You are very naughty- I didn't know about any of this! You should have texted me or emailed- I never really look in chit chat! I know you can do it- the job you end up with will definitely be one that was worth the wait!

Best of luck, babes- I know you can do it. POTS doesn't have to stop us succeeding, as I'm always saying! GO YOU! We're all right behind you.

Lods of love

Well done you , my illness didn't stop me either and many , many years ago I managed a degree .

It is one of the hardest things for anyone who has POTS to achieve ( as well as having a baby that is ) but worth all the effort and you must be feeling like I did then ..............stuff you illness, I can do everything I want to with my life .

Congrats to you .AMI

Cool! WHat was your degree in and where was it from?

Flop you shouldn't have to buy one- I got mine on the NHS. There are times when I don't need it at all but because this is a fluctuating condition, there are times when I really need it. My cardiologists got mine sorted for me. But it is only manual, and I am not strong enough to wheel myself at all- I need someone to be pushing me all the time.

I don't use it as much as I should- but that's because of Oxford and its cobbles- can you imagine how bumpy it is?!

If you need it for work, then seriously talk to your OT and your consultants about it.

good luck.

THanks everyone for jolly messages! couldn't have got through without the backing of other people who know what orthostatic intolerance and dysautonomia can be like! hugs and love to you all xxx

Persephone,

I think it's perhaps unfair or unrealistic to say as a general statement that any of us can do what you have done if we just perservere. This is the second time you have posted a topic with the same title. And, I have to admit it stung.

Some of us are so sick that willpower alone could never get us through school...or many other things. Willpower for me means getting dressed, getting through the day as best I can and staying as positive and hopeful as I possibly can.

Emily

Hi Emily. I never said that that everyone could do what I did if they just persevered. What I said was that if we persevered, POTS need not stop us doing what matters to us in the end.

And what matters to us is always different for each person! I needed a lot more than will power alone to get my degree. I have a special bed, a wheelchair, a walking stick, three personal assistants, college accommodations, special ergonomic furniture in the libraries, and as you'll remember from my posts when things were really, really bad- I had to have extensions on every single piece of work I did for the course. Doing my degree was my passion, but I know that everyone has different interests they want to pursue.

The point I'm trying to make is that we can work round POTS sometimes- that adapting and altering things isn't the same as failing. And that life goes on despite POTS.

I wasn't trying to sting anyone!

I was trying to help people to avoid feeling as sad as I have when I have felt POTS is conquering me while I'm in the POTS holes

Thanks everyone! This was my second degree. I did my first at St Andrews in Scotland, and then my Master of Studies degree in Medieval English Language and Literature at Oxford. I'm now working on the third degree, which is a phd (D.Phil as they call it) here in Oxford, too.

It is the hardest thing I've ever had to do - there have been so many challenges and I set a precedent through being given so much extra time, and having to go home and into hospital frequently when I got really sick. But I passed with a Distinction in the end.

It can be so toughwith the brain fog and the weakness, all aside from losing consciousness and physically injuring myself when I fall -- but it is worth persevering.

I just wanted to share a happy day with everyone, really. You may all know that I took a bit longer than the other people on the course to finish because I spent so much time in hospital, but I did it- finished! And yesterday was the graduation ceremony, so I thought I would share some pictures of the big day with you.

I hope this helps anyone who feels like POTS stops them from living life the way they want to. It might affect when you do the things that matter to you, but keep pushing, and POTS won't stop you from doing them. I was so sick that everyone thought I should drop out- there were days when I never, ever thought I could work or write a paper again. But keep trying! I did.

The first time I ever fainted in my life was down a flight of stairs. I hit my head off a door handle

To this day stairs give me a hard time- even if I'm in remission they're not as easy as they were before POTS.

Every day that I am able to go up to the reading rooms in the library, I end up so breathless I can't speak as I go in. So I have now taken to stopping half way up, and just catching my breath for a moment.

I am better with stairs now- they don't tend to make me faint anymore, but they make my heart go bananas.

I've had upper and lower scopes- joked with my friends about being made a spit-roast- a scope at each end!

The upper wasn't bad but the sedative wore off way too quickly with th elower and I was in a LOT OF PAIN

make sure you get a sedative. Dont do it without, esp if you have a tender tummy/bowel.

I found out I had food intolerances, but they were looking for signs of Crohns/inflammation because my tummy had become relaly sore and distended, i was getting terrible abdominal pains like appendicitis and was passing blood.

Iknow now that if I avoid food like wheat and milk then this doesn't happen and I can avoid my symptoms.

hope you get some answers and get through the scopes ok. xx

Hi CJ! I'm a fellow Celt from the Tartan isle rather than the Emerald one. I'm 25, so almost the same age as you. Rose Anne Kenny, who used to run aSyncope clinic in Newcastle moved over to Dublin in Ireland either last year or the year before-

you can google search her or have a look at www.stars.org.uk

Trudie Lobban, the director of the British Syncope Trust might be able to point you in the right direction regards getting a referral.

Let us know how you get on!

Are you working/studying/staying with family at the moment? Hope the illness isn't too debilitating at the moment for you.

Hey Tammy! That IS weird with the hypertension- I was going to chimein and say that I only ever get cold when my bp is low-- and when I'm due a period/or having one, I get cold like that. No amount of blankets keep me warm.

Except there was one time I got taken to the ER and had Vtach- I couldn't get warm then, and my pulse was away up to 232 bpm. I'm not sure why I got cold then as my bp was relatively high for me (about 140 systolic).

Let us know if you get any answers- it's a curious one.

I get it all the time. I get it more when I crash and when my bp is very low- if there isn't enough blood getting to your head then you're not going to be able to think clearly. That's the take my specialists have on it, and it makes logical sense, not just medical!

Hello. I've only posted a little over the last few months. So much has been going on! I'm now a lot healthier and a lot heavier than last year. Since starting Epogen I have gained over 50 lbs! But as my folks and friends keep saying- I'm here, and I'm ok.

I still crash- have just had a week at home because of one- but I bounce back a heck of a lot quicker these days than I used to. My head is in a better place than a year ago, too.

Life is good. I'm starting to really enjoy my PhD at Oxford. My first article was published in America last month (University of San Francisco Medieval Forum), and I've just won the College senior scholarship for next year which lets me dine on high table and gives me about ?350 ($700?).

I've been celebrating the end of my annus horribilis in style. I took my Dad to the Royal Opera House in London last week- best seats in the house, a real treat. Also booked a night at a really plush hotel. Was on my feet for ages and did lots of walking. Paid afterwards, but my Dad's happiness was worth it!

Next month I'm taking my Mum to Edinburgh for 4 nights over Mothering Sunday. I'm going to spoil her rotten too. It makes me feel so happy to be able to show my parents how much I appreciate them always standing by me

I'm not cured, but I'm coping

Your medics may be thinking of POTTS disease( 2 t's). I thought it was something to do with bones, though.

Hey Megan, that's GREAT! Get in touch with Manchester NOW and tell them what provision you will need- for postgrads it can take ages to sort things out.

Hey, Manchester is pretty near Oxford- maybe we can meet up? That would be cool!

Well done girlie!

Hello everyone!

I fainted awkwardly on my foot 4 weeks ago this very night. I didn't break anything, according to the x-ray, but it still isn't right. After I fell, there was no swelling or bruising. But it's so sore- I can barely put weight on my foot. Sometimes it's almost normal, with virtually no pain, but then it feels like something crunched out of place right in front of my middle three toes and through to the ball of my foot.

No one can detect anything wrong, but it's SO sore and now my foot is making crunching noises.

So far this term I have managed to bash both feet, dislocate both shoulders, land on my neck and bruise both arms. Oh and hurt my head, too! But I still hold out that I'm having a better time than a year ago....I'm much happier tho the Epogen has made me MUCH heavier (I've gained 55 lbs on it!)

Have any of you sustained nasty foot injuries and found it takes ages to heal? What can I do to help my foot? Because I've sustained worse injuries, my docs aren't majorly worried or bothered about a mere foot injury- but the pain is pretty hard core!