persephone

I used to drink up to 4 litres of water a day during a crash, and I'm still here. And not diabetic! Glad Mathias validated you. Did he make clear that his focus is diagnosis and research rather than treatment? I think he is conducting some studies on EPO at the moment, though, so you might be able to try that. It's really changed things for me It's usually about a 6 month wait for the autonomic testing. It's just variations on the tilt theme- one fasting, one not, an exercise tolerance test, yada yada!

Don't worry- they are frightening at the time but they're just like regularmigraines with some quirky effects added! I get them too- they usually affect my left eye, hand, arm and leg. The aura itself doesn't involve a sore head for me- that usually comes later. I had one just a couple of weeks ago. The more of them I have (may 3 or 4 a year), the better I am at coping. The aura never lasts that long, and wheras before I couldn't balance or walk right for ages after, and had to leave college to go home and rest, now I can stay up here, take it easy the next day and get stuck right in to work again. Although saying that, my head has only just started to feel properly clear again. Do google hemiplegic migraines- understanding is the key to feeling empowered so you don't get freaked and go through ER trauma again. Good luck

I'm not a lawyer but I was going to say the same thing- if your job descriotion requires you to clean, and you can't stand up to physically do the cleaning, I don't think you have much a comeback, as it's not the kind of job where you can spend most of your time sitting. I'm really sorry though- their attitude *****. They should be concerned for your welfare and how you are! You could look upon it as a blessing- firstly that you didn't faint yourself into a serious injury, and secondly that you can now go about getting a job that will be far less physically demanding, perhaps one involving admin and sitting at a desk. Out of something bad comes something good- it's no coincidence that the Chinese word for crisis is the same as the word for opportunity. Best of luck

Hey incase you don't qualify for the free prescriptions, you can buy an annual prescription card- costs about ?90 but means youcan get all the prescriptions you want for free for a year- it pays for itself about every 3 months for me!

Hey, Manchester won't be like that- it's great- very cosmopolitan and positive Message me on facebook and I can put you in touch with my friend there

Are you here yet? This is very exciting! I can't remember his name, but one of the patrons of STARS, the British Syncope Trust works near Manchester. Check out www.stars.org.uk Let me know how you get on, dear!

Hey Linda, have no idea what that could be- especially as it was so short lasting- do you get migraines? Sometimes migraine can impair movement?

Ditto with Liz- the treatment in Scotland is far superior. THere are now consultants who can deal with POTs in Glasgow, Edinburgh and Dundee. My specialist in Dundee gaveme my life back

Hello Becca, It's hard to rely on one team who are swamped with a backlog of referrals. The people who helped me most were in Scotland, not London. although Prof Mathias initially diagnosed me. There are no rheumatologists at Queens Square, which is a neurology specialty hospital. They are in fact at University College Hospital, and I'd think that if Professor Grhamae has retired (thought I hope not- the dude is a legend!) then it would be by Dr Hakim, who also specialises in hypermobility, and is lovely. It surprises me that youcan be given a diagnosis one day, only to have it recoked the next, but I know another lass who used to come to these boards who had exactly the same thing happen- and under Prof Mathias, too. It's also worth noting that if you are deemed as having a mental health difficulty, your notes can be withheld if you request them, because they can be seen as 'detrimental' to your mental health. What treatments have you tried ? The best one I've had is EPO injections, but note that they weren't given to me by London. I got given them by an electrophysiologist up in Scotland. Wishing you well, P

Mary was so young! I remember us talking about hemiplegic migraines. I never thought she was so sick. Her poor family.

I am having a terrible time with getting up in the mornings- the alarm makes m heart race so mcuh that I have to lie down and sleep off the tachycardia I don't know what the answer is

I have it alongside pots. I had a great deal of trouble with Cymbalta - although it might help with the brain fog and the aches, in my opinion, it is at a real cost. I'm doing really well now on gabapentin twice a day for the pain. It makes me feel more like I'm on an even keel. Do you have the 'trigger point' pains? There are certain trigger points on the body- eg, back of the neck and sholders and elbows) that cause pain disproportionate to the pressure applied to them. There is a theory that Fibromyalgia is autonomic too- tho I can't remember where I read that. Fibro, like POTS, can get worse after stress or a lack of sleep.

Procrit/Epogen/EPO injections twice a week- took me from fainting every day and always feeling tired, to working out at the gmy and fainting maybe twice a month now. Wonder drug. Although it contributed to significant weight gain- who cares about that when you get your life back, though?

Have you noticed any food triggering this? I experienced this symptom when I developed a wheat and lactose intolerance- I looked huge, but once I cut them out it got better.

It is exhausting because we have to raise our arms up to wash our hair and that makes the heart beat harder and faster. I cannot compromise on showers- it is very rarely that I won't have one. luckily, my university room has a walk in shower with a fold down seat, so that if I feel myself starting to go funny, I can sit down. I sometimes have to when I'm doing my hair. Have you tried getting a seat in the shower? I find that when i'm bad, standing up is murder. you could always try washing your hair in the bath by just lying back - I have done that , too at home, but moving from supine to sitting up in the bath can be really, really hard, especially if you are very dizzy. A month without a shower is something no one should have to suffer. Can someone help you shower- a close friend or a relative? failing that, in the UK at least, if someone is fundamentally unable to maintain their own bathing and washing needs, then social services are obliged to carry out an assessment and help them to do it.

Be very, very careful with Cymbalta- it can cause mania and hypomania, especially if you are taking it for something OTHER than depression, such as POTS or joint pain, like I was. It is also extremely difficult to stop- there are several withdrawal symptoms associated with this drug. In addition, it was NOt approved by the FDA for joint pain/stress incontinence because of the connections with suicidal impulses in trials. See: http://www.yourlawyer.com/topics/overview/cymbalta In May 2006, GlaxoSmithKline and the FDA cautioned Paxil may raise the risk of suicidal behavior in young adults too and changed the drug?s label to reflect that risk. On October 17, 2005, Eli Lilly expanded its warning about potential liver-related problems with its depression drug, Cymbalta, and cautioned doctors against prescribing it to patients with chronic liver disease, U.S. health regulators announced. The new label for the drug also contains reports of hepatitis, jaundice and other liver-related problems in patients using Cymbalta. The FDA has recently issued a new warning about the potential for suicidal thinking in adults taking antidepressants, but the agency specifically singled out Cymbalta (generic: duloxetine) because of a higher than expected rate of suicide attempts in recent studies. Cymbalta is a relatively new antidepressant manufactured by Eli Lilly that has been associated with suicide risk since its clinical trials. The warning comes after a review of Cymbalta by Eli Lilly; found that 11 of nearly 9,000 women taking it for urinary incontinence tried to commit suicide. The fact that these patients were suffering from urinary incontinence and not depression is significant because the drug companies have long argued that antidepressants are used by depressed people who have a higher likelihood of committing suicide

I'm like Ernie- my pulse can be anything from 20-250++ Last year I had a sustained episode of 214bpm in hospital which was recorded. but I don't OFTEN go that high, only if I am really rough. And epo injections (procrit I think it is in the US) mean that I don't often go up beyond 130-40 now.

I don't mean to sound disrespectful, but a pulse of 100 is actually not that bad- and is only JUST tachycardic. A pulse running at 100 would not cause symptoms in many people. Was your Orthostatic Hypotension really life threatening? My BP flatlines and my pulse can top 250 bpm but it's never been called life threatening. Did you have other complications or something?

Hello Linda, wee hen! I've had this lately too. My mum is forcing me out of the house each day, even if it's just aimlessly wandering around the supermarket. Get your boyf and folks over if you can- just to get you out and about- it hurts but it will help. I have noticed that my joints hurt MORE when I stay put, but it's important to avoid overdoing it as well. Strike the balance! Haven't heard from you in a bit. I'm off Myspace pretty much as it attracts all sort of crappy viruses these days. Get on facebook, woman! No viruses on there! and easier to navigate. Loads of love, keep in touch xx

I am in the UK and on EPO. Speak to the National as I think they are starting to prescribe it (I got written up while in SCotland)

Go Rita! That was a really constructive and awesome way to handle those muppets. Proud of you! A beacon for the rest of us

Hooray! This sounds great- this is how it SHOULD be. My friend at Manchester doing a PhD is really loving it there. I'll have to get her to look out for you. Manc does have a great reputation as a friendly university. I'm so pleased this all looks so positive!

I felt nervous too but I just described in very factual terms what I couldn't do and why I couldn't do it. I also provided some detailed medical explanations. eg I can't life my arms above my head because this posture causes tachycardia and a lowering of bp.... They were meant to be renewing whether I would carry on having it, but now I have been awarded a higher rate and I will be awarded a brand new car of my choice every 3 years, fully taced and insured- all I have to pay is the petrol. Shame I can't drive yet! I'm planning on starting lessons real soon tho! I hope you get on ok!

I hope it can be got as a liquid- so far I am on capsules! Thanks for the replies guys, I'm going back to my Doctor next week I just wondered if any of you had experience because I know a lot of you have taken this drug, whereas very few people my Doc has treated ever have. In fact, I think I am the ONLY one!

How many of you have experiences of coming off this drug?