persephone

Hello! *waves*Happy New Year I'm heaps better- have found a treatment that really works. I'm now doing my PhD at Oxford- I think last time we spoke I was just doing my Master's. I'm about to start teaching undergraduates at Oxford too. Bring it on

I get trouble with my sternum. I used to notice my chest 'popping' if I had a really bad faint, and other people could hear it too. Now I'm much better I don't find that happens anymore. I do still get sternum pain though. On days like that, a hot bath or shower helps me a bit, on top of the usual analgesia. My rheumatologist who specialises in EDS said that it's common in EDS to experience sternum pain that's so bad it can be mistaken for angina

Hi I don't know about atropine but I do know that I developed STevens-Johnson syndrome which became systemic, after just 7 days of half a tablet for a new med I was put on in November. I couldn't believe that such a small dosefor such a short time could have such a dramatic effect, but it made me so poorly. It sounds like a similar type of allergic reaction has kicked in with you. I noticed a solid tachycardia with the SJS- not that I'm trying to suggest you have it, but my point is, our bodies are more sensitive than most other people's. Keep pushing for answers. The V tach must have been scary but be glad it was only 6 beats and not particularly sustained. Sinustachy is also uncomfortable, but at least we know it isn't life threatening. Good luck!

Hey Rachel, Procrit was a last chance for me, too- but it got me out of a wheelchair and cartwheeling about the corridors of the hospital. It *is* expensive, but it works very well in folk like us who don't respond to other drugs and treatments. Good luck!

Don't worry. It may not be what you think. I got asked lots ofpsych questions in a questionairre when I went to a migraine clinic for the first time- but it wasn't used as ammunition- it was used to assess the impact that my headaches were having on the rest of my life- e.g "does it make you feel down when you can't do stuff cos of your migraines" etc. I got touchy at first too, but when I realised that the Doctors weren't coming from the angle I expected, I felt better. Try to keep an open mind. good luck!

Opioid drugs are known to cause hypotension. It's a question of risk and benefit for most people. There are times when I need codeine based drugs to help with pain- and unless my bp is really low, I more often than not will have to take them. I just try to be sensible and judge wisely. I'm not sure what the US equivalent is, but in the UK all doctors and pharmacists consult the BNF- British National Formulary- which you can log onto (just set up a username and password) https://www.medicinescomplete.com/mc/bnf/cu...nf%2Fcurrent%2F This tells you about the side effects for all licensed drugs in Britain, but I guess some of the drug names you mention will be lost in translation. Maybe an American resource like this would be useful for you? I know I feel more on top of things if I have knowledge about what I'm taking and what to expect. Sounds to me (not that I'm a doctor) like your hypotension has flared due to the opioid nature of the drug you took, but it should fade. Have you tried extra salt and water to counter it? Hope you are all right!

Becca I would call PRof's secretary and tell her you need PRof to write to these people and explain POTS is a physical condition, especially given the EDS which we know is a root cause for dysautonomia. 0207 837 3611 for the switchboard at the NAtional. I;d strongly suggest also getting in touch with PRof Grahame and Alan Hakim at UCLH and telling them what has happened- tell them what you hae told us. Between them, those 3 sshould be able to help you feel a bit more empowered and validated.

I wasn't fainting on cymbalta but it did funny stuff to my adrenalin levels and made me feel wired. I had to come off. Good luck

Hi Becca, have sent you a message :-) Don't accept the unacceptable

I love to dance! I love ceilidh (Scottish country) dancing at balls and posh formal do's, but also having a good foot thrash to some proper hard core techno music. I guess this is what happens when your older brother works in the Drum n Bass music industry!

Hi Tess and Amy, What an interesting topic. I have just experienced the most terrifying allergic reaction to a drug ever. I developed Stevens-Johnson syndrome after taking an anti-convulsant. First of all, I got a chest infection, the went fluey, then had solid tachycardia for 24 hours, even lying flat, and then the rash appeared all over my body- a livid, red angry rash with target shaped circular dots. I had some liver and kidney abnormality, as well as all the autonomic stuff of course- but I know full well how frightening a drug reaction can be- whetrher true allergy or simply 'adverse'. Hope you are able to keep avoiding the evils! Has anyone else here ever had Stevens-Johnson? page here explains it concisely: http://www.patient.co.uk/showdoc/40001287/

I don't quite understand what you mean- could you expand a bit on that? In what ways are you 'immature'?

Oh forgot to say, second repair last October. Mum's life has changed completely now. She has so much more confidence.

Hey Tea! My mum's first repair lasted less than two years. EDS stops them lasting for too long. I do indeed have Raynauds. I get the episodes when my BP goes nuts. Last episode was in July in Dundee when I had to be given morphine cos the pain was so bad; it was awful. But when I was all stressed with Oxford being crap to me, it got really bad- also when I was anaemic and malnourished at Oxford it got bad. Make sure you're taking lots of iron- kale, leafy greens etc. Do look into the EDS side of things. I hope it made you feel better to know about that. I felt hugely relieved when they told me my own pain was probably muscular and joint related.

Hi Tea- I read your post with interest for two reasons. First- my mum has had a prolapsed bladder and had surgery twice. It's much better now Second- I had EXACTLy what you describe with my chest- they told me also it could be Prinzmetal, I had GTN spray on me and ended up in hospital several times. But these 2 things can be linked- my mum and I both have Ehlers Danlos. When I last saw my EDS specialist, he said that many women (it does seem to be predominantly women) get misdiagnosed with prinzmetals when actually their pain is muscular- costochondritis. He also spoke to my mum about her bladder prolapse as this is linked to EDS too. Do you have EDS? I can't remember. But if you do, it might comfort you to know that could be at least partly responsible for the terrible chest pain. I don't get it now, but when I did it was so intense I could even throw up with it. Hope you feel better soon, Tea. Had missed you round these parts

I was like you- confused as normal cuffs made it look like I had no drop in bp. Then I had a tilt test where they were able to moniutor my bp continuously, with every pulse beat- they discovered that my bp was flatlining quite transiently (less than say 20 seconds) and then rising again- but this is of course too quick for a regular bp cuff to pick up- all those monitors pick up are the overshoot that comes later where bp goes sky high to compensate. Have you had a tilt. You sound like you need one with more specialised equipment than regular gps have.

PhD student at Oxford. I'm currently working with 13th century manuscriipts in Scotland which is pretty exciting

cyclizine given s an iv works a treat for me. good luck Jacquie!

Hi Rachel, Who cares about a blood test? If gluten isn't agreeing with you, cut it out right away and see if you notice a difference. I tested negative on the biopsy for coeliac but avoiding gluten made me much better. I used to bloat and bleed if I came into contact with wheat or gluten, so even tho I wasn't full blown coeliac, I used to avoid the culprits anyhow. I also noticed quite an improvement in my headaches after doing it. THere are some delicious wheat and gluten free alternative foods. It is also known that a gluten free diet can help some people with MS to feel better.

Hey Rachel. I had two on the NHs which were worth $300 each. The good ones are expensive- You want to get one with gel inside that moulds to your shape. They are the really good ones. The others aren't comfortable. Wheelchairs without lumbar cushions can be so uncomfortable- hope you get something good soon.

Hey Maggy, This exact same thing happened to me- once I acquired POTS, I became allergic to the micropore tape, certain antibiotics, wheat, dairy, dust and feathers! Now I'm better the allergies are fading again to the extent that I can eat cheese and bread with only mild effect. The micropore tape is still bad though, and don't even talk to me about ECG electrodes- they leave me red and itchy for weeks on end. I'm not sure about why this happens- mast cell activation disorders which are sometimes thought to be part of pots could be connected, I suppose- the histamine levels in the blood get altered- so could explain a more acute response to things?

Hyperventilation can raise heart rate- but part of autonomic testing that I had was to make you hyperventilate so they could see how high your heart rate went, and then compare it with the tilt table results... Breathing patterns can affect the tilt test

Hope you are feeling better. I have sustained loads of injuries: I have broken an elbow, a foot, dislocated both shoulders, almost broken my neck, and concussed myself. And also bashed fingers as well. But I haven't fainted for ages- feel a lot better. Hope you reach this point sooner rather than later

Mary you might do well with IVABRADINE- it's the first betablocker type drug that lowers heart rate WITHOUT lowering bp! I had it last year, it was great but now I don't need it anymore. I think it's now available in the States. I had it in the UK.

Technically I had the predisposition through EDS. BUT I acquired POTS primarily after a viral infection in 2004. Peole who suffer POTs after this sort of sudden onset in later life have the best chance of spontaneous recovery, often within 3-5 years, I was told. It is now coming up for 3 years, and I am feeling a lot better than I did in the beginning. My mobility, my blood pressure, my day to day life have all improved dramatically. I believe that for some people, this illness runs its course and then recedes- at least, that's what seems to be happening to me. Good luck!