persephone

Benadryl makes my tachy go bananas and my cardiologist told me to avoid it at all costs.

It can drop suddenly and then surge really high to compensate for the drop- maybe this is what you are picking up with the cuff as that can take 30 seconds + to record? Could you have the hyperadrenergic form of pots, too? That could make bp rise, I think

Alcohol lowers bp so is more likely to RAISE hr. It also dehydrates you, so will make you feel much, much worse. I find that I can drink VERY occasionally, but I constantly have to alternate with soft drinks/water/irn-bru to make up for it. And I invariably pay dearly the next day.

IF I stand up with my arms above myhead, it makes my bp flatline- the heart has to work harder to send blood to the arms if they are raised, so your hr will rise a lot. I can't even stretch in the morning with my arms up or I will fall flat on my face. I also often find that my hands go cold, and my wholearms- apparently, the body prioritises the blood going to the head! (So I have been told).

I haven't but my neurologist says it CAN be used to help. Good luck!

In me, yes- all the time, and everything! At least I'm not alone...and nor are you

There's a useful resource here that tells you about it, Lois! http://www.hypermobility.org/diagnosis.php I had various joints prodded and poked. Very helpfully, my mum was with me, and she had the same joints prodded and poked. It looks as if the hypermobility, dysautonomia, menstrual issues and even rare brain-stem aura migraines all come from her side of the family. They look for 9 different joints being hypermobile in the Beighton scale, and you score a point for each joint that is hyperextensible. I scored 9. Hope this helps. PM me if I can help any more! Merry Christmas

Thanks Soph, I just picked it up. You're a sweetie

Hi Leigh, Don't wish this thread away- it's a great resource for everyone who comes to this board because we ALL feel like this at times- it's what this illness does to us, no matter how sociable we are normally. We all feel like this no and again. I know I do, and everyone who contributed here has made a difference to me. Thank you.

I've been put on a progesterone only pill to try and stop my periods, as my symptoms are always worse around time of the month. Have been taking Cerazette, the newest type of P.O.P available in the UK- for 7 days. Well, talk about a flare up in symptoms, I can barely stand- blood pressure is crashing, pulse racing far more than it has for months and months and months. On top of all that my mood is absolutely FOUL I could slap people today I feel so angry and aggressive (although partof that may be pure frustration at the prospectof cancelling my new year plans because I can't actually get around on my own at the moment- and I have made plans for travelling to Scotland to spend the time with friends. Fat chance of that happening if I'm still like this). Any ideas? I don't know if it is worth persevering with the pill - maybe this will settle down in a few weeks. Or the other way to look at it is, what if things can only get worse, and I know THIS EARLY ON that the drug is doing me no good? Gah.

I get them too- just try not to worry about them. I take an SNRI (similar to an SSRI)- these can affect your dfreams. I think it settles once you have properly adjusted to the drug. If they are really disturbing, maybe you could lower the dose?

Hi Cindy! I'm sorry you're feeling icky. IT is possible to have false negatives with tilt tests, but often times doctors will conclude things all too quickly. Did you know that some people don't get rate changes for the first ten minutes or even half hour of standing? Since you are not fainting, it might suggest that your pulse or bp change more gradually than abruptly. I wonder if just doing the poor-man's tilt (i.e- just standing up!) in front of a Doctor for say half an hour or fifteen minutes might show the rate changes? Have you noticed that you get symptoms after doing certain things? Maybe, climbing stairs? Or walking for a very long period of time? Maybe you coul have an exercise tolerance test, since one of the symptoms for some folks can include exercise intolerance. Good luck, and let us know how you get on. :-)

I convulse too- in the UK this is known as an anoxic seizure and is said to be caused by either the heart stopping or a drop in blood pressure that compromises circulation and stops your brain getting enough oxygen. It is always reversible. Check out www.stars.org.uk where they explain in more detail about it. Don't worry! You're not alone

Ditto- I'm with Melissa. You all know what a horrific time I had at Oxford last year but had to choose between a lawsuit and my degree.

Thanks Michelle! It was emailed to me as a cat dancing to house music!

Hi Lauren, yep- I get visual disturbances. But in all seriousness I also see ghosts. Maybe you are too? I never quite know how to discuss these things, but I find when I'm at my illest with POTS is when I'm most 'receptive' or 'perceptive' to 'other' things.

wish we had a way of contacting her to offer support.

you don't have to have sustained tachycardia throughout the whole test. I get spikes of it when I first stand, then my hr will slow a bit, then spike repeatedly until I pass out. I'm just wondering if they thought it was negative because you didn't lose consciousness- osme medics define a tilt in those terms. I think it sounds like you had a positive test, even with GTN, although your bp didn't drop very much.

Hey Melissa, congrats on getting out! Have a fantastic bath with lots of bubbles very soon!

HUGS to you Ernie

Thanks so much for the update. Please can you read out the following to our wee Sunfish: Hey Melissa- happy birthday! My heart goes out to you, being in the hospital just now and on your birthday. At least you're getting morphine- you should keep a journal of your dreams if you can- that stuff gives AMAZING visions and sensations!!!! :-) I also know just what it's like to be desperate for a bath but to not be able to have one. Could the nurses help hoist you into the bath? I had to be hoisted into the bath by nurses in hospital when I felt really terrible, although I often had to wait til the wards were quieter and there were enough people to cope if I had a bad turn/ passed out in the water with the heat. Sometimes I was too sick even for that, though. Or get them to bring a bowl- not a fish bowl though!!!! Sometimes they will do that and you can have a wash in the bed. Get folks to bring you in nice sponges and soaps:) When I was at my very sickest, and confined to bed, the highlight of my day was having a bath or a wash- it was all I could manage and the only time I was allowed to really move out of my bed or my room. I know that when you do finally get it, it will be the nicest wash you've ever had! Good luck with it all, keep on truckin'! xXx We're all thinking of ya :-)

I asked about unusual side effects with Cymbalta recently because I went positively loopy on it for the first week- it was like legalised speed for me- I was waking up at 4am, powerwalking to the gym for it opening at 7am, couldn't sit still, had a fixed stare, was in no pain whatsoever with any of my joints. However, it also stopped me peeing because it tightens the sphincter muscle. Good idea to start on a low dose and work up to avoid such extremes! It is a good drug and has helped loads with my energy levels and joint pain from EDS (except when I got flu a couple of weeks back- haven't shaken it off yet). Please can people search topics before they post? It's *really* silly for people to read stuff that's only recently been discussed; a lot of us don't want to have to type out the same stuff again and again! It also is a good way of saving energy for everyone.

Have no idea who the Wiggles are- they aren't known in Britain at all. I wouldn't get overly irritated about the Wiggles disease name- after all, this Wikipedia article was typed by one person- that's the thing about Wikipedia- it isn't an authoritative source. anyone can type anything and pretend it's true. Michael J Fox has Parkinson's- you don't hear of Fox disease, do you?!

I don't like the term letting go- I assiciate it with passivity and resignation. I have been coping better with the bad times thanks to a cognitive therapist. I think it's important to still aim to do things and not to give in. But to accept that life goes in waves for everyone- sick and healthy, and that it's not about life going in a straight line of perfection for anybody. That's been the single most helpful thing for me over the last year.

I get seasonal affective disorder which means I can get quite depressed and affected by the shorter days and longer nights. This year, it's hit me slightly differently- I'm not depressed like I was last winter but I am EXTREMELY tired and although I'm quite happy I'm perfectloy content to just curl up in bed and watch TV with the blankets wrapped round me (I am usually more outgoing). Do any of you have a light box? I have one, but even that's not shifting it for me. My therapist says I'm probably still very worn out after finishing my master's at the end of october; I think she may be right!