persephone

i know exactly how you feel. I feel the same today.

The most recent article on POTS, which poohbear posted the other day, from Clinical Cardiology, by John Camm in London, says that POTS can happen withou accompanying hypotension. I had the same problem as you- my pulse and bp are all over the place, but in the tilt, my bp didn't drop, so I've been told I don't have autonomic dysfunction. However, every other Doctor I have knows that this is RUBBISH. My blood pressure can be anything from 203/152 and 51/30 My pulse can go anywhere from 29 to 186 So take heart, your doctor isn't saying you don't have pots- or at least he shouldn't be.

Is there anyone else out there who has travelled to another country to see a specialist? I've never been to the states...I don't like long flights but Dr Grubb certainly sounds like he could help! (please, oh please!)

love it! you rule, girlfriend <--shades for the sunfish

Tramadol! (Zydol)! Today nothing shifted my pain, I felt like all my joints had snapped. I did feel a bit better about a hot bath. Heat definitely helps, and lying flat- taking the weight off my hips, butt, legs etc. Have you thought about holistic stuff like acupuncture? Myuncle has MS and swears by it for his pains and aches. Perhaps a homoepath could help come up with some chemical free pain relief treatments for you? Maybe a massage? Uhh....stuff from Lush? their bathbombs are awesome...www.lush.com Feel better soon!

I'm going to see an endocrinologist here in August...he seemed open inded when I sasw him before Xmas, and agreed I had a profound tachycardia on standing. BUT he didn't know about POTS at all. He's asked me to forward relevant paperwork to him- articles etc about POTS so he can get an overview. If you were me, what would you print and take, bearing in mind I'm looking to find what hormonal treatments might help? It's been suggested I could try HRT- hormone replacement therapy..anyone else try this and had a positive response? any response gratefully received. P x

Ok, just say, hypothetically, I could come to the states and see a specialist. Who would I see? where would I see them? Bearing in mind I'm british...how much $$ are we talking? Any ansewrs gratefully received...there seem to be no answers waiting for me i nthis country so I'll have to start thinking outside the box, eh guys?

I know, love, I'm exactly the same. I try and do without almost ALWAYS...but last week when I was too ill to stand and had to go to a dance I turned up in my chair. That was ok as it was a disability group dance, but I still didn't feel right doing it. Maybe I just feel like a fake cos I know I have the use of my legs it's just actually standing that is a problem! Last week when I was in cardiac care AGAIN after a bad flare up, my consultant asked me to walk from the sofa (where I was sitting) to my wheelchair which he moved away from the room. I stood up and could not take a single step- my eyes went sparkly, my head and chest started pounding and I just slumped. still, we're better to do stuff in wheelchairs than not do them at all!

I just thought there are some really unusual usernames on here, wouldn't it be interesting if we all said a bit about why we have the ones we do? I'll go first... Persephone is related to my experience of dysautonomia. For those of you who don't know, Persephone was a Greek Goddess of the underworld. She was collecting flowers one day in the sunshine and living a happy life when all of a sudden,from NOWHERE the god of the underworld snatched her away to his kingdom under the earth where spirits of the dead live. Demeter, her mother, was goddess of harvest and out of grief made the earth cold so the crops died- that's how winter came about. In the end she struck a deal with Hades who agreed that for half the year Persephone could stay on earth with her mother (the earth is ok then- that's spring and summer time). But the other half would be spent in the underworld with him- autumn and winter . This myth is actually to explain the seasons and why they exist, but I've always been drawn to the actual story. I think POTS was a bit like Hades for me- I was minding my own business quite happily when BANG- it hit me hard, too, and took me into a very dark place, away from the light and happiness I'd known. And because my POTS seems to run in cycles, I feel very much like half my life is spent sick and half well. So I can identify on that level too. It's not all bad though- without the darkness, we wouldn't appreciate the light. So that's why I'm Persephone...I really did feel at the time that POTS had robbed me of half my life.

I don't know if a diagnosis is of any particular benefit other than satisfying a curious mind. I havetype III hypermobile type and at least I kow the 'growing pains' I 've had for years weren't in my head, or even growing pains at all! It's satisfying to know there is justification for my pain. but simultaneously frustrating because there's no real cure for it You sound like a bendy type. did you know the bendiness lessens with age in many people? think back to when you were a kid- were you bendier then? Did you do gymnastics or amuse your friends by putting your body into weird positions? what about pulling muscles out of place, or joints? I know you said ankles, and that's a big one. EDS can form a big part of the jigsaw in explaining some peoples' dysautonomia. Someone else more clued up than me can comment next, but I think I'm right in saying most people with POTS are also hypermobile? At least that's what my Professor in London (Prof Grahame, an absolutely adorable fellow) told me. Keep us posted with how you get on

Well, you have confirmation it's physical, which is great0- now you can move on and stop doubting your mind. And don't worry about SSDI- you can always reapply. In this country (UK), people rarely get disability benefits the first time they apply, I'm told. More often than not they have to appeal the decision to get anywhere at all... I'm glad you have some more answers. But sorry about being stuck in traffic like that- I can't STAND traffic jams. And whenever I'm stuck in one I invariably need a wee!

I always get chest pain when my POTS is bad. I've been told it's probably the EDS> Today it was so bad I couldn't swallow! Do you ever hear a click or pop sound with this pain? If so, you're not alone! All I can do when it happens is take painkillers. No one has really bothered to investigate it, even though when I was in London the pain got so bad that I vomitted. I have NEVER puked with pain in my life, but I did then Try lying on a bed if you can, and with lots of cushions? Other than that, I don't really know what to suggest. Did you get to the Doc in the end? It would be really interesting to know what they said....

I was told people who get pots postvirally have the best chance of a spontaneous recovery. I've established that my pots is cyclical--I can go for 3 months and be fine, then it kicks in. So I'm kind of better but not fully cured?

what is mestinon, what does it do? I haven't heard of it in this country. maybe i should give it a try. also, do you think dr grubb would do a phone consult with my cardiologist here in theUK?

I know exactly what you mean with the wheelchair thing--I'm always terrified tha tpeople will think I'm a fake if they see me using it sometimes but not others. I'm dreading Oxford on that front- will they expect me to be on wheels ALL the time instead of just sometimes? You're right in that it's their problem, not mine, but I always think I must look guilty- I always feel so embarrassed in case people assume I'm just lazy:/ I try only to use wheels when I *reall* have to. I got a new one today on the NHS- a zipper. It's better than my last one but still not very funky at all:(

The water makes me thirstier. I'm not taking a BB just now- chances are it's your dysautonomia playing up?

God, Melissa, reading your posts it could have been ME talking- I'm on the case about starting grad school in October and have been in touch with the disabilities centre at my college too. Next week I've got to go up to Oxford in my wheelchair and make sure everything's accessible. This will be particularly amusing- my college at Oxford was built before Columbus went to America!!! It is full of listed buildings. But if I can't access them, they HAVE to change. Alleluia for the disability rights act! Where are you hoping to go? what will you be studying? Sorry if you've alreaedy said- my concentration is WAY OFF today! I'm going to Oxford (hopefully--dependent on funding) to do Medieval English (beowulf, chaucer etc) Keep us all posted on your progress Don't let pots stop you doing anything. POTS rearranged is errr..TOPS? That's what you'll be in grad school, chuck! That's the most useful tihng I can say just now. I know, my mind is a very strange entity

I've had weird stroke like symptoms- I even posted for advice on here and people thought I might be having a stroke- my bp was almost 200/150, and Iwas numb down one side etec. A neuro thought it was familial hemiplegic migraine, but I have not had this diagnosis confirmed or treated. I don't know the answer to these questions- I just wanted to say that I have experienced something similar. I have POTS NCS, EDSIII and what appears to be some kind of tachy-brady thing going on that no one particularly is bothered about examining or fixing But I know how alarming the 'strokey' episodes are. Mine wear off after a short while- perhaps demand a second opinion if yours are persisting and compromising your health to such a degree as you're writing about. You deserve better than living with this. and Carmen- I wish I could say something to make it ok for you- I can only offer a hug .Sorry

Thanks guys. I'm so glad it's not just me. It's still pretty disappointing, but I know this follows a cycle and WILL pass- it HAS to. It always does.

Thanks Ariella. I still have lots of questions for the team at the clinic and I'll be getting in touch with them about this one. My cardio is already trying to make contact. He saw my bp dip to 67/59 yesterday, so knows something is amiss, whether as Jenn said in her lovely message to me just now- perhaps the test just didn't pick up THIS time. Remember that I was feeling pretty well when I went up there for the tests. I was quite ok. Not totally ok, but reasonably. whereas now, I have taken a huge nosedive and literally come crashing

I just don't believe it. I'm just out of hospital after 2days in the cardiac care unit AGAIN- my pulse was down to 37 and up to 141. I nearly smashed my face off the patio in the garden on Tuesday- it was utterly relentless- every time I stood I fell. The heat is relevant- we're ha\ving aheatwave here like we've not had in YEARS. It is DEFINITELY making me worse. By sheer coincidence while I was there, my results came through from my week of autonomic testing. I can't believe it, but the letter gives no hard data except on some of the blood tests. It also says my circadian rhythm (on my blood pressure) is normal after evaluating my 24 hour bp. I don't understand how they can say this- every reading taken when I was standing didn'ttake0 it flashed up as an error because it was so erratic. Yet they seem to have totally overlooked this. They've also said my bp was ok on tilt- even though I know it was down to 75/65 at one point. They've not recommended any drugs--and I can't even see the consultant til Novemer. My cardiologist is very confused- he says if I don't have low BP, then what I have isn't POTS, because my autonomic nervous system, according to the results, is ok. So what is making my pulse go up to 166 and down to the 30s like it does? I just don't know WHAT to do. I can barely move- and you guys know how good I was over graduation--walking, running, dancing, ceilidhing! Now I'm back in my wheelchair and I feel so let down by everyone. I just don't know where to go from here, or what to do next.

Can you tell me more about the chest condition? I've always said that something clicks in my chest if I have a really bad turn on standing. I have EDS too, by the way, as well as POTS and VVS/NCS

Had this done in the hospital a few months ago; they said it was hard to tell what it was, prob just caught sinus tachy. these episodes really don't happen often to me- the last time I was THIs bad was March/ April...I wish they could catch episodes like this one because this absolutely *****

I had a feeling it would be the csae. But whenever I try and mention it to a doctor thye poo-hoo it and tell me I can't see an EP person cos they might ablate something and make my pots worse. but what if there's some other EP problem? This has ALWAYS been an issue I've worried about; don't know how to get any one medical in the vicinity to listen

I thought this was the mirror opposite of pots, but there you go. For days my heart's been physically HURTING me- sharp pains under left breast bone and through to my back like I'm in a vice My mum listened to my chest the other day when I stood up and my heart stopped for 4 or 5 seconds. I felt AWFUL! then it sped up and was very tachycardic. But for the past 2 days my pulse has been down in the 30s and 40s. I can almost feel it "blocking"_ I feel it move but only every 2nd or 3rd movement comes up as a proper beat. They said before they thought I may have had heart block but then changed their minds and said all wqas perfectly fine. What should I do? GP at a loss- still no results from London, now over SEVEN weeks since the tests, and besides, they don't "do" arrhythmias, by all accounts. I need to see cardios not neuros. Very helpful! But seriously guys, I'm feeling a bit uneasy about this one