persephone

I get this too. I'm going through it right now. The heart pains are terrible. I get nauseated, constipated but have to wee all the time, migraines, palpitations and chest wall and heart pains on even sitting up. My vision also goes blurry. I find I get some relief from the pain with a hot bath. Don't know why that works, but it does. Be careful getting in and out of the tub though. I'm hoping today I can stay out of bed for a bit longer. Tomorrow I am facing a 400 mile journey for a family funeral. There is no way I can miss it. I really should be taking my wheelchair but I don't know if the venue is accessible and I don''t want to shock people by turning up in one as it's a hard enough time as it is. I am wondering if I will feel a whole lot better after the funeral in my head, but I think physically I will prrobably be worse because of exhaustion.

Hello all. I'm having the worst POTs crash I've had in at least a year- you know the drill- the crushing chest pain, the dizziness on standing, the pain in the ribs, the dizziness, the headaches. Awful. I've been taking EPO for 3 years and I wondered if I could ask some of my friends across the pond who are also taking it a few questions. Do you adjust the dose when a flare comes? What is the standard dose for you guys? As far as we know, I am the only UK POTS patient taking EPO- and I'm no longer on speaking terms with the consultant who prescribed it for me initially (long story involving Stevens-Johnson syndrome and ineptitude). I have been on the same dose for 3 years- 2000 units. I gather this is very low, and I am wondering if my dosage needs to be changed. I will be contacting my POTS consultant, Prof Mathias about this, but I know he doesn't prescribe it, so I guess I'm just looking to hear about your different experiences NB: I am not seeking medical advice, just insight into others' experiences with this drug. Thanks all x x x

Pain can do crazy things to your BP- my one time pain related high was 196/142 but it didn't last long! (good job, too, or I'd have been dead!)

Well folks, I've done it- booked my flights. Scared and excited! British Airways were CRAP. I explained about needing to recline and they were like, "Well, try a short haul fliht next week and see if it hurts you unbearably or not...." BUT then I spoke to Virgin Atlantic. The lady I spoke to had SVT! She knew exactly what I was talking about. Long story short: I paid an extra $200 to go for Premium Economy which reclines by 8" and has a footrest. They are also givingg me supplemental oxygen, wheelchair from check in to the plane and also arrivals at Boston. They are even using a Burnett body support for me- it moulds itself to the shape of your figure. http://www.rbfhealthcare.co.uk/bodsup.htm Obviously I haven't flown yet- that won't be til next month, but seriously, from the customer care I received today- anyone out there looking for a longhaul flight with POTS, try Virgin Atlantic and tell BA to get knotted! Wish me luck!

Sorry about your news, Maxine. It's interesting you mention this because my mum and I are EDS type 3, but my uncle (her brother) had an Aneurysm at 37. Not aortic I hasten to add- subarrachnoid, but it does make me wonder if ALL EDS folk are more at risk of this sort of thing, not just type 4. Although, he seems more like a type 4 because he has pectus carinatum (pigeon chest) as well as othe features.

how apt I came across this today. I hd an emergency appt with the dentist today because I had a filling fall out. They never told me there was such a thing as NON adrenalin based anaesthetic. They told me it's impossible to be allergic to adrenalin because we all have it, and that's it, so I have always had to put up with unbearable tachycardia at the dentist. I also have Ehlers Danlos and I tried to explain to the Dentist today that the shot takes longer to work on me, and then doesn't last long. She said. "Well, I'll just TRY now to work on the tooth as I've given you the shot, and we'll see what happens..." I lasted FIVE SECONDS with the drill. It was like I had been given no anaesthetic at all. It took me THIRTY MINUTES to get numb. I have spent upwards of ?1000 ($2000) on my teeth this past year- and this is on the NHS. I don't know anyone else who has trouble with their teeth like I do, and I really look after them. I despair, I really do!

Hello. When y systolic drops below 100 I start feeling it. Below 90, bit crap. Below 80, fading out. Below 70, that's it. BAM!

THe UK POTS consultant, PRofessor Chris Mathias told me the first time he met me that Darwin and Florence Nightingale were POTS sufferers.

Just bumping this- does anyone fancy a meet in Harvard/Boston in October? Persephone x x

Ditto what Flop said. I have am now doing a PhD. Every day in life I lament the loss of a fully functioning brain. I could have WALKED this PhD if I'd done it before my POTS symptoms emerged. Now I struggle to even remember what books I should read, let alone managing to actually read them. I'm currently at home with my parents, and my mum has revealed that she thinks I'm lazy and not bothered about doing things. Even though it seems that way, I just can't remember what I should be doing. I need prompting. I have to say though, my medication doesn't help. I've been told that EPO/PROCRIT can affect memory and cognition... I would say, encourage your son to do more, but cut him slack at the same time. Don't be too soft though- don't let him give in to the illness! Otherwise things will only get worse

Anyone here caught Swine Flu yet? Am wondering how it could affect us, whether or not to be worried.....?

Idon't think it lies in my heritage (Scottish). LAst I heard, there were 6 POTS patients there including me. Your poll/question makes me think about MS- research suggests that the further away from the equator that a country is, the more people there are with MS. And for some reason, the highest concentration (per thousand or million, or whatever it is) is actually in the West of Scotland. I'm worried about this at the moment because my Mum and Dad are from there, and my mum has ben having neurological symptoms for over a year. We have a consultation on Tuesday where I think they will tell us whether or not it's MS. The last MRI showed inflammation. Wish us luck! We've had a hard enough time with my crappy health- we could do without my mum suffering too!

I've gotten really into meditation and mindfulness- it trains you to focus only on the present moment, without feeling scared of the past or present. THere's currently a clinical trial in OXford that uses this to treat clinically depressed people,and the results so far are phenomenal- it's shown to be more effective than antidepressants and CBT combined in some folks. I've just got my hands on two great books, recommended to me by a specialist: Full Catastrophe Living and THe Mindful Way Through Depression. They are great texts. Good luck!

I forgot to say- I also have a similar background to you, being a graduate who undertook study when sick. Be very proud of your achievement. It is worsth so much more than for those who tok their health for granted. You are special.

Has my health isolated me from the world? Oh yes, for years. But that doesn't mean I have to BE isolated from the world. If people dson't know about my condition, it's my job to educate them. It doesn't always work- but when it does, it's an amazing feeling. April I know how you feel- you can only see sorrow, and unfairness, and feel sad about the life you feel you could be living. But the first step towards feeling better, and more energised- because you are putting a lot of energy into anger right now- is to look for the positive. No matter how small- it's tough. Sometimes I am *so* pissed off with everyone and everything around me. But if I challenge those negative thoughts/observations, then things get brighter. Do you have evidence that those girls got their jobs through connections? I have worked in a similar environment where people get jobs through who they know. I feel pity for them- I would rather get a job through WHAT I know. That would prove to me that unlike people who rely on old school ties and similar networks, I could get a job because I'm good enough. It's hard to have an invisible illness, but rest assured, if your friends ARE real friends, they won't be mad because you can't go to lunch for hours, or walk for miles. They just won't fully understand why you can't do those things. Why don't you give your friend a call- the one you don't see too often- and invite her over? Or perhaps you could meet her somewhere nearby. If it all gets too much, you can say, "I don't feel too hot- I need to get home, I hope you understand?" I know how trying it is to be in that situation. But look upon this as an opportunity to sift through fairweather friends and fnd real ones. I had to do that- and it was painful. I look at the friends I had before my illness, and do you know, some of them stopped talking to me altogether because I got so ill they didn't knw what to say/they thought I might not make it. Charming! But you know, I'd rather find out the truth about people sooner rather than later. What point is there in wasting energy on people who are insincere? Yes, I miss the life I had before POTS. But by working hard at steadily finding the positives, the life I've got now is special and precious too. Different doesn't have to mean inferior. It just means new, not the same. Be open to change- be open to people, and open to seeing the positives. Sending you big hugs.

I find that if I sit for too long, thechange in posture is more startling for my autonomic nervous system. I suppose it's like a micro version of deconditioning.

Happened to me on Duloxetine. I was terrified it would become permanent. but it went after8-10 weeks

Hope he didn't suffer. Whether you liked him or not, his influence on modern music is indisputable.

This definitely sounds like a large kidney stone == especiallly the debris

Hello Tilly, I'm in the UK. The main charity for us in this country is the Syncope Trust- you can check out their wesbite at www.stars.org.uk. Ramakentesh- understanding of POTS and dysautonomia is very limited. When I was diagnosed 4 years ago, I was told that I was one of just six people in the whole of Scotland (5 million) with POTS. I agree with you that the condition isn't uncommon; but in the UK, diagnosis *is* rare. It's much more likely to be treated as vasovagal syncope or M.E in my experience and that of many folks I know here with POTS.

Ehlers Danlos can make your chest pop. I used to get it a lot. Haven't had it for a while though.

I always feel worse around 5 too. When I get bad, I can't do anything between 4 and 7.

EVen when I am well, I feel angry about the years that I truly LOST to this condition. I commonly refer to my early 20s as my "lost years" because I feel I got nothing from them but very damaging experiences. Whoever it was who said, I had to prove over and over again how sick I was,- YES I am with you on that. Now I spend my time trying SO hard to pretend to be normal. People have no idea... I get mad at other people at work- who have no idea what it's like to not be able to get up in the morning knowing you can work that day. It's just horrible. I can't see a way out of it, which just fuels my depressive state.

I had this too- I ended up suffering from Trigeminal Neuralgia which I posted on here recently. It was horrendous- much more intense than people would normally experience with dental work. I was screaming and crying and unable to ewat for four days- it took me far beyond my pain threshold. I thought what was happening to me was more about Ehlers Danlos and fibromyalgia than POTS, to be honest- as those two conditions areknown to alter pain perception. do you have EDS as well?

THanks everyone for your feedback. Ramakentesh, I'm glad you told me- thanks for the heads up!