persephone

Hello all, As you may know, I manage POTS quite well at the moment. I have trouble when the plane takes off and lands sometimes, but I am wondering if I could indeed fly long enough to get from the UK to Harvard for a conference this October. also, any of you near Harvard- it would be great to meet up in the flesh, as I have been kicking about these boards on and off for 5 years and feel like I know some of you very well indeed! P x

I have one but I rarely use it these days. I could have done with it the other day, though.

Your monitor sounds unrealiable. Seriously- it was great that you managed to do this stuff CONGRATULATIONS. I ignore numbers and figures now- I just do what feels right. Have chucked out all my monitors!

Hi folks. I had dental trouble last week which I'm being told has triggered the pain I'm now feeling- the worst of my entire life. All through my left jaw and left teeth. It has had me screaming, sobbing, hysterical with pain because it is taking me far beyond my pain threshold. No painkillers help. Not even tramadol. I was given marcane and other local anaesthetic injections by the dentist. I was assured these would give 12 hours of relief but it was not even two hours later that they wore off. I am home from Oxford, unable to function, unable to eat or sleep properly. I am wondering if this is some kind of complication of EDS, and also if I had an adverse reaction to the injections, since they made me - and my poor gums and mouth in general- feel FAR worse. What other treatments are there? I feel very alone with this. PLEASE anyone who has had experrience - tell me what helped and how you coped as I am not doing too well with this unbearable and unmanageable pain right now. Persephone. xx

Is this just a code for EDS? Nothing for POTS or autonomic stuff? I thought EDS stuff already had classfication?

Just thought I would chime in here and say that I have a GP who is exactly like this neuro chap. He is lovely, and lets me talk for as long as I need- even if it makes him late for his other patients. He has never EVER said to me, "I haven't got time," or "I don't believe you," or, "You're making a fuss about nothing." He appreciates that I have medical knowledge. He even invites medical students in to our consults so they can learn about POTS, EDS, hemiplegic migraines and the whole host of other ailments that take me to him. We always work things out together. Recently, I thought I was having a relapse of POTS, but we figures together that it was actually a case of being overmedicated on a drug I take for something else- one of my consultants had given me a dose which causes trmors, tachycardia, leg weakness and blood sugar disturbances. Now I've lowered it I'm catching up with 3 weeks' worth of work. I feel SAFE when I'm with this GP. I know he will stop anything bad from happening to me every time. I just worry what will happen if I ever have to switch GPs...it would break my heart because this guy is one in a million.

\i don't want to fresk you but I was told that ablation rarely helps those with POTS, especially if it involves removing the sinus node. For me at least, the tachycardia is what brings my bp back up, so to remove the mechanism that allows my heart to race, my bp would be permanently low. This is how it was explained to me. But I have pots as a secondary to EDS, rather than the type you describe. I'm not sure how much of my own situation applies to you. Hope you feel better soon x

I haven't fainted for a long time, and thought perhaps I wouldn't have problems with exercise now. How wrong I was! I went to a yoga class yesterday and the instructor got us to stand up with our arms above our head and lean backwards. It was awful! I felt the familiar tachy and shakes, and then my vision went sparkly. She got us to breathe deeply too as we were doing this stuff and that seemed to just make it worse. And although I am bendy with EDS, doing things like press ups and putting all my weight on my wrists was absolute TORTURE. I suppose it's obvious when you think about it that yoga doesn't work for us- but I thought I would share my experience anyway! The only good thing to come from it was the sleep. I was so exhausted that I slept for 12 hours and have only just woken up.

sounds more like mumps?

Jenwic, I've experienced similar effects with different drugs. Remember thaT pots patients often have chemical sensitivities on a scale others can't imagine. I wonder if you need an incredibly slow and minute taper. I usually spend months and months coming off of drugs. My last nightmare was with Gabap[entin/Neurontin. I went into full blown withdrawal of the sort heroin addicts experience. It was terrible for a really long time. I am also wondering- has anyone checked your potassium levels? Florinef can lower this and could explain some of your symptoms. My grandfather ttook florinef for postural hypotension, and it lowered his potassium levels so much that he was ill for ages. We never knew until one day someone did a full blood count at the GPs. Two hours later, doctors from the HOSPITAl turned up at my grandfather's house to check he was still alive and call an urgent ambulance to get him into hospital and boost his potassium levels. It could be somethin as simple as your potassium levels being off kilter as a result of Florinef. Others have been where you are now- you will survive. I'm so sorry for all the upset and frustration. Take each day as it comes, and try to explore all avenues. Thinking of you, Persephone xxx

I believe in recovery. I was diagnosed in Jan 05, aged 23. I'm now 27 and can work full time for my PhD. There are times- eg, just before a period, or if I have a major infection/ailment- that I know my bp drops and my hr rises, but I haven't used a wheelchair for over a year. This fall I went to College without even so much as a stick. My pain from EDS is heaps better, and I spend my days working in a library reading room that has 75 steps to it! I still monitor things- I know that if I have a late night/too little sleep, for instance, I'll feel crappy. But I for one have experienced a recovery- and find that keeping tabs on things lets me stay pretty well. I would say I'm virtually back to where I was before the POTS got bad. Life can- and does- get better for many of us.

Hey Ernie, Mine washhard too but persevere- it softens and gets really comfy. I found it really helpful just the other day when I had a hemiplegic migraine and couldn't move properly. It was also good for raising my bp as it had dipped, so I tilted myself to v45 degrees. The thing I always worry about is whether the bed will get STUCK in these weird positions! hasn't done so far though, and that's been 2 beds over 3 years!

Hey ERnie, Congrats! I still have one of these and they are SO helpful, even if you are just having a sore day and don't want to pressure your joints. Good luck x

Hi. It's been a while. I thought it might cheer some of you to know that I appear to be in total and utter remission. EPO continues to transform my life, not just my blood pressure! I'm back at Oxford working full time on my PhD. I can't believe it, but I am able to make my way to the top floor of the Bodleian Library- 75 steps! - each and every day, and work 9-5 in a bolt upright chair. The difference is incredible. Pacing myself is also helping. I know it sounds obvious, but a) getting up early regular meals c) finishing work no later than 6 pm d) generally being in bed by midnight e) making time to socialise most days but also having at least 1 or 2 'quiet' nights a week where I can chill out and lie down for a bit from an early time ...helps so much with my energy and 'spoon' levels. Those of you who have been on the boards for a while will know how bad I was with POTS; my cardiologist caught my bp flatlining in my last tilt and said I was the worst affected of any patient he had seen or heard of. I came to University with a wheelchair, stick and load of other disabled-related things; this year, for the first time, I came with not even so much as stick. If this can happen to me, I hope it can happen to you all. Let me be proof that this condition, for some of us, CAN improve in the late 20s, or after an infection/virus has resolved. All the best Persephone

Oh Meg, I've been where you are. I experienced this kind of hassle at OXford University, where I am a grad student. I won't go into the whole thing now, but the point is, they MUST accommodate you. If you have medical evidence/certificates, they MUST make adjustments- even if it means you take ten times as long to complete the degree. I took six months longer than other students to finish my Master's, but my doctors and consultants backed me every step of the way. My bp was actually flatlining daily at this point, and I sustained many injuries through passing out, and also experienced hemiplegic migraines and episodes of prolonged syncope and tachycardia. Keep pushing; don't stop- and when you finish your course, it will mean so much more. Email me if I can help

Hey that's good news. What course is he doing, and what qualification is he working towards?

I always feel lousy and see sparkles during flights- and those are just short ones, from England to Scotland that last less than an hour! Make sure you drink something like Gatorade, and also keep wiggling your toes and keep your feet moving. Wear compression stockings if you can. I am getting ready to travel to the very north of Scotland in just a couple of weeks and although I could have flown to Inverness for not very much, I decided it would be kinder on my body if I just got a sleeper train (overnight train) from London up instead. At least that way my blood pressure should be ok! Ket us know how you get on.

me too

PAF is pure autonomic failure. Check it out on potsplace.com

If I were you, I'd cancel and say "I don't think this Dcotr realises that civility and courtesy cost nothing." Sorry it didn't work out. My old Dr, in whom I had so much faith, also bailed on me recently, so I feel for you.

Be CAREFUL with lamictal- it is a known trigger for Stevens-Johnson syndrome. I had this and will never, ever forget it. It made POTs feel like a walk in the park.

14 years. It gets better but is cyclical - I have had significant remissions but also crashes.

Those findings were in renal patients. For the rest of us, the effects could contribute to mood disorders and instability- it could make the mood more volatile and liable to fluctuate.

I've been taking this stuff for 2 years- it was the miracle cure for my POTS as it brought my bp right back up to normal BUT I have just discovered it affects the brain, cognition and neural processing. I've now been told to cut the dose if I can. I had no idea about any of this so thought others might also want to know about it...it actually explains a lot abotu what's happened to me http://www.nature.com/npp/journal/v33/n3/abs/1301439a.html

What is she feeling when she tries to stand up? Is she getting visual disturbances? Or could it be joint pain if she has hypermobile joints, like lots of POTS patients do? Get her to keep talking to you about what she feels is going on.