persephone

I just looked up the sciatic nerve and that's exactly where my pain is- so it seems quite likely that sciatica is the answer. My knees are so sore now that I can't walk without a stick or even crutches. I'm going to the Dr tomorrow.

I've been off the meds for21 days. I haven't had the pain for 21 days!

Do any of you get this? I don't mean the gnawing ache of EDS- I mean like a sharp, stabbing going down the inside of the leg, mainly in the thigh. It only happens to me in my right leg. It happens when I'm at rest, not so much when I'm up and about. It also sometimes stabs in my right groin. I've been getting pins and needles in my legs too and feeling of numbness. I am off all meds except tylenol now- it's been 21 days since I had anything else. I expected to be a bit achey but this stabbing is new. I'm not sure there is any point in going to the Dr about it because they are so often keen to say "It's just POTS/EDS/you're rare". Could this be autonomic dysfunction? It seems so out of character. I'm guessng not sciatica because it's moretowards the front of the leg than the back, and my spine doesn't feel worse than usual? My knees also are not great though, and get shooting pains also. Any ideas? And if you have had it, what alleviates it?

Please be careful. LAmictal/lanotrigine gave me Stevens-Johnson and I have never been so sick. Even now I have skin and cardiac disturbances

I'm in the uk. welcome!

I had terrible headaches on Midodrine- and my bp stayed at 77/39 so in the end my Ep and I decided to abandon it.

I get really achy legs too- was told it's EDS. Only thing I can suggest is an electric blanket and lots ofhot water bottles. Heat helps. Also, acupuncture for me.

My ANS Dr did exactly the same to me- and even ignored calls, faxes and letters from my local cardiologists. In the end I gave up on this Dr and sought help elsewhere. I ended up with a great Scottish EP purely by chance. I agree though, it is frustrating and definitely not good enough. Common courtesy would dictate that the ANS Doc says hey, thanks for the letters but I'm very busy and will get around to you as soon as I can. In actual fact I had something similar with my thesis supervisor where I was just ignored for a whole month and told bluntly "you aren't a priority." What a croc. I suggest punching a cushion or having a hot bath. I feel your annoyance even just remembering my experiences in the past!

Hey Ernie, have you tried EPOgen? Injections that raise bp? Really helped me.

It can be part of Ehlers Danlos. Do you have this? PEople with EDS can get chest pain that resembles angina but which is infact musculo-skeletal.

Mine looked like it rose too when a normal bp cuff was used. Then after twelve years of POTS, I had a different type of ttt, as it involved a special monitor that could monitor bp continuously with each pulse beat. The results were VERY different to what had ever been noted before. My bp would drop to ZERO, three or four times in the test, in fact, but for no longer than thirty seconds. Now, if you are anything like me, a normal cuff can't handle the transient swings in your bp, so it will keepn reinflating and eventually either give you an error reading, or give you a reading once your bp has come back up again. I get really mad at doctors who say bp is ok with a regular cuff. Sometimes this condition is more subtle and cunning than that! Try to find out if your TTT will involve a porta-press monitor (I think that's what it's called). Make sure you ask for one, if you can. If I hadn't had one of those, Doctors would have thought my bp was largely ok.

I took it but had to stop. It caused visual disturbance and terrible migraines

I was the first UK POTS patient to try it. Within 12hours my pulse went from 180 to 65. But the migraines and phosphenes it caused were unbearable in the end and I had to come off. THat was in 2006. But now I'm being prescribed it again.

Sara! Really important news for you - a non beta blocker drug called IVABRADINE can be used to slow heart rate. IT's the world's first betablocker that doesn't lower bp. I think it can also be used safely in asthmatics. Google IVABRADINE and see what you can find. I took it and it helped.

I don't know but I get it too.

Just wondering how mom4cem got on with the gentler alarm? I'm having trouble with alarms again- the suddenness with which I get woken up really makes my pulse go nuts and it's a bad way to start off the day, feeling so lousy

Hugs Amy. We are all thinking of you

You can't get a license if you have any kind of uncontrolled syncope. I explored this last year. I could have a new car through DLA motability scheme as I am on the higher rate for mobility, but I would have to have people drive me about. You have to go either 12 or 18 months without an attack before they will even consider the application. Sorry to be the bearer of bad tidings. I don't understand why you would need a DRIVING licence fora BUS pass??? Are you on DLA? YOu might be able to get some travel arrangements sorted through that, if you are on it.

I've had 273 but I couldn't even feel it. I was in agony all over from an allergic reaction I was having. I am now getting a flare up of POTS and like you, jjh, my rates are far higher than before. I'm not sure what to do as 'i can't take betablockers and my bp is actually pretty high for me (140/104). Let us know how youget on

Hi Rachel, I've been on this since July 06, so 18 months now. It took about 6 weeks to kick in for me. The Doctors will need to do weekly bloods to see what your haematocrit and haemaglobin levels are like; but nce it works, believe me you will feel the difference. I went from syncopal on sitting on the day of admission to 8 weeks later cartwheeling out of the ward when I left to come back to University. It was my last option too- which was scary, but it *really* works! :-)

Yes, Becca, I've contacted them both in the past when symptoms got worse. You have nothing to lose. MAthias knows what to look for. You need a tilt test under the right conditions. I had 3 false-negatives because they weren't done properly. When I finally found someone who was very precise- a quiet, dark room, very warm and relaxing- my body's anxiety reflexes went away, meaning that my readings were realistic rather than superficially high and therefore normal bp. what we actually saw was worse than we all expected- my bp flatlined completely, and I went blue and convulsed on one side. There was no arguing after that - but it took TWELVE YEARS to get the right test and the right result. You need to relax- try something holistic like acupuncture, where the focus isn't on diagnosis or categorisation but in fact relief of suffering. Once you feel calmer and more in control, you will be able to face NHS challenges. How often are you fainting? Are you about to do any reading to distract yourself? Anything on medieval welsh, perhaps? What about looking up some postgrad courses, like we mentioned? Or writing a blog? SOMETHING is better than nothing- don't let this eat into your brain power- you are a very bright young woman. LEt us know how you are

Hi ladies. Thought I'd chime in. As you know, I'm heaps better than I once was. I'm sure a great part of this is attributable to the mechanical hospital bed I have at home and at university- I managed to get both on permanent loan through the NHS. I just press a button and I can raise the head, or foot, or whole bed. It makes life so much easier, not just in terms of POTS symptoms, but also EDS. I find if I lie with the foot of the bed up and til the whole bed when my coat-hanger pain is bad, it eases after an hour or so. If you can get a hospital style mechanical bed, then do! It may seem odd, and not that aesthetcially pleasing, but it can make such a difference Good luck!

I love him! Our next door nieghbours have 4 and they are so cute! not all that ebdny tho- like podgy little blocks especially if you drop them!

Becca- I strngly urge you to get on the phone either to Prof Mathias or to Prof Grahame at UCLH. If things are as bad as you say, what do you have to lose? so many folks with dysautonomia have been in your position. Perhaps knowing of this misdiagnosis is making your frame of mind and mental state worse. At least speak to someone who is an autonomic specialist; I'm sure i remember you telling me that your current doctors don't know about it. don't let these ignorant medics make you a victim; get some power and control back!

I don't know, but I get this too. Someone suggested to me that EDS may cause it. Does this affect you?