persephone

I have to say the wheelchair thing is something I find extremely strange- how can someone with severe POTS wheel themselves manually if they have issues with blood pooling and tachycardia? Blood would pool in your legs in a normal wheelchair, and pushing your arms back to wheel could cause a massive rise in heart rate. Then again, I also find it hard to understand how people with POTS can drive. I would never, EVER put myself or other road users at risk, and sitting upright can cause symptoms in so many of us.

So strange. I can be ok outside of this period, but when I'm in a flare, no matter what time I get up, I HAVE to lie down and I am a lot less capable of working, thinking and functioning. I just wondered if there was anyone who experiences this, and also if anyone has ideas or explanations about why it happens? Thanks all

It's years since I last had an episode this odd. I stood up this morning after sitting watching tv for half an hour. I stretched just ONE arm above my head, rather than two, in case it made me feel faint. As I did, I felt a rush in my head, my vision went dim and I got very disorientated. I flopped back down into the chair I'd been sitting in. I had tingling in my tongue, my vision had sparks of electricity in it, and my hands, fingers, arms and feet twitched uncontrollably for about 30 seconds. My posture was upright but I couldn't respond to my mother who was shouting at me because she knew I was having an episode. I was aware of her speaking. But I couldn't see properly. My ears were buzzing. I had not hyperventilated as far as my mother or I am aware. Does anyone else ever get this? Does anyone know what could cause it? My guess is, as I'm due a period, my bp flatlined briefly, causing a hypoxic reaction which led to the twitching and altered sensory perception? I hadrly ever get episodes that take my by surprise like this. I'm now feeling pretty tingly and woozy and it's over an hour since it happened. I still have very minor 'glittery rain' in my vision.

Hello; I know we almost all get hugely better on IV fluids. Can anyone post a link or reference to some paper/research on WHY or HOW that is? I've proved yet again today how much of a difference IV fluid makes- I went from 155 standing to 100. Now my team are saying they don't know why it makes such a difference to have IV fluid compared to drinking. I don't know either. But what I do know is that it works. If anyone could help me out, I'd really appreciate it. My attending would want to see this by tomorrow pm I guess.

DON'T DO IT! I went GA in January for dental work and had the worst pots crash of my life afterwards that floored me until April. If I had the choice again I would rather have sedtion and feel pain than face the crashing bp and crazy tachycardias I had. Horrible Never underestimate the power of GA on pots to make you feel horrendous

I you find anything out, PLEASE let me know.

Typical. TheONLY specialty not covered on my health plan is cardiology. If I end up in the ER, they see my pulse is off, and they want a cardiology review, it means I will have to pay it all myself. How much could something like this cost? I have no clue. In the UK, to pay for a private cardiology consultation would be $250-300. BUT I could have to see a cardiologist in an emergency situation, during an inpatient stay, etc etc. Can anyone give me somee rough idea of costs. Are we talking colossal- as in, you would be bankrupted? Or are we talking may comparablewith UK cost of a private consultation? MAN this health insurance stuff is confusing. Starting to realise how lucky we are in the UK. I've had some pretty awful experiences, but at least I never had to worry about paying for them, or qualifying to have them covered!

Hi! I first started University ten years ago next month, and am about to attend my third. It's going to be a real eye opener for me to attend a US university as I'm from the UK. However, in the last ten years, I'd say the things which are most important are: Space between classes- no all day / all morning/ all afternoon blocks Someone to fetch library books or return them if you can't - the university will have funding for this if your doctor confirms your disability with them Extensions to deadlines in case of bad days or flare ups OK to lie down in class if you need to recline Assistive technology- eg computer that lets you talk instead of typing for words to appear on screen. Ok to record lectures if you can't keep up writing notes, or get someone else to record them if you can't be there. Use the internet to research from home on bad days Recognise there may be things you can't do on a certain day- you may not have enough spoons to do an all night frat party, ball, or cocktail party. You may not have enough spoons to go shopping or on a super long walk / job with college friends Make sure anyone who may meet you in dorms or classes knows what to do if you have an episode Make sure you set up an advance directive with your college doctor so tht they know precisely what to do if you collapse/have an episode. Not sure if you have EDS/fibro- if you do, what about things like wrist splints to help you type. Also not sure what your subjects will be? Mine were humanities and languages- lots of reading and essay based stuff. Easier than lab based would have been. There are some folks on here who have done sciences who will be able to advise you better than I can. GOOD LUCK!

If you type the drug into the search box you will get loads of results. It's been usedby lots of us. I was the first POTS patient in the UK to take it, back in 2006.

Tea that was beautiful. Thank you. I am crying now. You are amazing. I'm so glad you're in my life.

I'm angry with POTS today. It has robbed me of so much. It is always there, like a big black cloud on the horizon. I ended up in the ER/A&E on Friday night due to a pleuritic chest infection and an allergic reaction to Erythromycin which felt to me exactly like the beginnings of a Stevens Johnson reaction. When the paramedics took me in, I was screaming in pain and vomiting with the gut pain. They lied to me and told me all they had was paracetamol (tylenol). I know for a fact that carry morphine in all ambulances. They told me they couldn't carry me down the stairs to the ambulance because, and I quote, "It's 2 am and we're tired." Worse still, when I arrived at the hospital, the doctor on call saw me puking into a bowl, saw that I was crying and dishevelled, and asked my mum if I was ANOTHER FRIDAY NIGHT BINGE DRINKER?? Such ignorance, such prejudice. I hate it. But hey, we should be thick skinned to experiences like this by now, right? well, why has it upset me so much? I've put up with this nonsense for almost ten years, after all. But it's got me thinking about the way POTs stops me from living my life: I haven't been able to: **get a driver's license **finish any of my degrees on time **have a single academic year where I haven't had to take time out from college **get health insurance I had to get that out today. I've had ENOUGH OF YOU, POTS. Anyone else want to talk about what POTS has robbed them of, feel free. I figure it's important to be positive, but sometimes we need to let off steam and vent. I had to do this today or I might EXPLODE.

I take it and I'm fine.

Thanks! I just found out today they are going to furnish my apartment for me- AMAZING!

Hello all. Just over a month til I move to the US. My apartment will have very minimal furniture. So I need to ask you, WHERE do I go for furniture bargains? I want my apartment to be lovely and homely. But I don't have a bottomless pit of money. In particular, I will need a comfy sofa to lie on on those POTSy days... A table, chairs, a rug, that type of thing. People have suggested target and ikea to me, but even their prices seem quite steep compared to the UK for some things. Do many second hand sales happen in the US? Do you folks use freecycle? So many questions!!! Thanks in advance xx

Hello; as you may know, I'm coming to th eUS this fall for an academic year. I've been in touch with the university and told them about my POTS, EDS and fibro but I'm not sure what sort of accommodations to expect. Will they help with physical accommodation- eg dorms, furnishings, equipment etc? In the UK, every graduate student- even international ones, can access what is called 'disabled students' allowance', which is government funded/ university funded. It allows disabled students to buy equipment they might need such as assistive technology, ergonomic furniture, persona assistance with study needs in the form of a note taker or book carrier. Is there anything like this in the US? Any advice? 6 weeks til I go, not sure what to expect... Thanks

Don't apologise- just say you have heard from othe rPOTS patients who had more success with ivabradine. Atenolol even on a paeds dose took my bp down to 70s systolic lying down! Ivabradine works for some but I'd suggest the thing to try is OCTREOTIDE. I keep banging on and on about it but that's because it's making such a difference to me. I've even had some press coversage which you can read here: http://tinyurl.com/33b4z8y Nothing worked for me the way this stuff does. See what she says... There has been some research on POTS and octreotide in the States that shows great promise. But because it's an expensive drug no one in the UK seems willing to give it much of a chance. But I'm great on it. Ivabradine just succeeded in making my bp drop further and giving me awful migraines. x

I think these are BRILLIANT! I've taken the 4th one to put on my fundraising page- hope you don't mind :-) (I'm raising money for the Bristol Heart Institute who are treating me very successfully and have great Docs). They are PERFECT- completely clear, very colourful and thought provoking. Would you mind if I got in touch with the UK Syncope Trust about your designs? They are trying to raise awareness of POTS and your images would probably work very well with that. You can check them out on www.stars.org.uk Thanks for sharing- you've made my day :)

Drops in bp do this to my vision too. Also, migraine can do this- with the ptosis do you also get a headache?

I've had an EP study. It doesn't hurt. It makes your head pound when you have super fast rates, but that's all. I didn't have any sedation, just a sht of local anaesthetic in my groin when they put the wires up. Most of mine was sinus tachy so we didn't ablate, and thus I can't comment on ablation. I found my EP study absolutely fascinating- I gave a running commentary on what I was feeling while my team gave a running commentary on what they were doing :-)

EVery other Doctor br this one told me there were no more drugs left to try. They left me in a state where I was unable to work, walk, or even eat. Just goes to show how little they think our lives are worth, because Octreotide is a very expensive drug. The monthly LAR injection is about ?850, and the short acting ones are aanything from ?300-900 a month. My consultant said he cared about m and not budgets. He was a total breath of fresh air. It really has been amazing. I'm off procrit. In fact, procrit was making me much worse. Not only did I build up a tolerance to it. I felt the ill effects of it too- because it was stimulating red cell production at an enhanced rate, it CAUSED ANAEMIA - the one thing it is supposed to treat- by using up my iron stores! I'm a lot better now I'm off it. And the colossal 70 lb weight gain I had on it is beginning to shift too. Everyone, I say to you KEEP ON ASKING ABOUT OCTREOTIDE. MAKE THE DOCS SIT UP AND LISTEN. I WILL BE WRITING TO THE USELESS DOCTORS WHO DENIED ME THE DRUG AND TELLING THEM I HAVE A LIFE BACK NO THANKS TO THEM. Good luck! ps the GI stuff did calm down, but I'm taking buscopan and peppermint oil to deal with it.

I had to come off it, it was awful. Especially the paraesthesia (tingling)

Mirry I had the worst headaches of my life when I was hypotensive. Now my bp is stable the headaches have disappeared. And I was getting them all day every day. I would cry in pain but now they have vanished. Have you been in touch with the specialist I told you about? He's going to be able to sort all of this out for you, I reckon. I was in a terrible state when I first got admitted under him. If he can fix me, he can fix anyone! Good luck

IT sounds much more like a reflex anoxic seizure to me, which is more common in children and can have hallmark features of vasovagal episodes but involves a child feeling sleepy or groogy for SEVERAL HOURS afterwards... the best people on this are STARS at www.stars.org.uk Get your friend to look them up and read the definitions and stories, see if they sound similar to her daughter.

I was thinking micturition syncope too. To add to Flop's comment, it's not just older men with enlarged prostates who faint when they wee. I did as well when my treatment wasn't right. Is your friend in the south of England? If so I have come across a fabulous new cardiologist who has a specialist interest in syncope AND POTS! PM me for details and I'll send them on to you. FAR BETTER THAN OXFORD!

Ladies, I'm out of hospital. Octreotide is my MIRACLE drug. I feel better than in years. No tachycardia, no hypotension. No crushing fatigue. It's amazing. Anyone out there who is looking for new drugs to try, get on octreotide- it makes ALL THE DIFFERENCE. I am particularly hard to treat because my bp actually FLATLINES altogether, in addition to the postural tachycardia. But it's working even on me... Without the forum I'd never have heard of octreotide, or known to ask for it. THANK YOU for giving me my life back. How can I ever repay you all?