Ragnar

Funnily enough I've just come back from A+E, I've had a severe headache for the last three weeks that suddenly got much worse, turns out my neck and shoulder muscles are all in spasm. The Doctor treating me had one POT's patient who had had IV saline and benefitted from it. So it is available here. I'll go armed with this info to my GP. It seems such a simple and risk free procedure, at least to try it at first, with out a port etc. Here's hoping!

Please - I would like th e medical community to reco gnize this proven treatment as a way to considerably improve the quality of life in patients with refractory P OTS. I am pr oof of tha t . I'm so pleased to hear that IV saline has such a good result for you. Unfortunately your comment above rings true for me. I've presented various papers, Grub et al, to the two 'specialists' treating me and they won't even take them from me let alone read them. Their opinion is that there is no diffference between oral fluids and those delivered by IV. Those of you who have had to persuade your Doctors to try this therapy how did you do it?

So I returned to work last week after seven months off. What I thought would be a fairly simple and easy job turned out to ruin me in the period of five days! During my time off I've been active but I think I might of under estimated the amount of time I needed to rest. I've been taking fludrocortisone, again, now for three months, I don't know if I'm imagining it but it seems to make me quite 'edgy' and on alert plus I have a headache I can't shift. It's also put on four kilos but I don't feel the benefit. Those of you taking fludrocortisone did you feel the benefit fairly quickly? I feel I've given it a fair crack. To add into the mix my bladder is now playing up. By chance we've discovered retention, after significant problems with Midorine. They want to perform a bladder neck incision but this seems a drastic procedure to just try another drug that I didn't notice any benefit from. So, rant over. It's easy to let set backs like this weigh heavy on your mind. I'm trying to divert the energy that goes into all the negative thoughts into positive actions. Onwards and upwards!

@amycooper it can be so frustrating. I'm in a place, like you, where I can't access a specialist. I find that the process of seeing my current Doctor so stressful that I know my symptoms will worsen after seeing him. I'm not a naturally confrontational person but I've had to become one in order to make progress. I've been told fludrocortisone doesn't have any side effects, the same for Midorine. I've been told there is zero evidence that IV fluids work so there's no point trying. The last visit I was told I could either put up with the 'imaginary' side effects of Fludrocortisone and Midorine or live with the risk of passing out in the street and being run over! I liken the process to trying to fix a fine Swiss watch movement when your watchmaker has only got a bag of hammers and, they've got one eye covered up! As @WinterSown pointed out to me; someone is paying for your visits to the Doctor, whether that is yourself, your insurance company or the State, to provide a service. If you're not getting results hunt around, tell people of your bad experiences but especially let people know when you find a decent Doctor who'll listen. From experience its a long, tiring road that we often have to travel alone. Doctors aren't Gods, although some do think they are. I'm still looking for answers and I hope you find yours soon. Best wishes, Ragnar

@amycooper. Keep on at it! I'm in a similar situation. I've reacted badly to fludrocortisone, Midorine and SSRI's, much to the exasperation of my GP. The Midorine caused painful urine retention but it's not the Midorine it's me! As others have said, shop around for a Doctor who 'fits' for you, they are out there, I'm told! Good luck, Ragnar

@GasconAlex I've not looked into that but I will now. I live very near the sea and I was thinking about taking some light swimming exercise there. All I need is to find someone else prepared to get in with me, from a safety point of view!

Hi all. Sorry for not replying in a timely manner, things went better for a while there! I was trying Florinef and things took a turn for the worse, high levels of anxiety, increased dizziness, generally quite a miserable time. My Doctor has told me its nothing to do with the Florinef. I've stopped it and asked for a second opinion.

Hi, thanks all for your replies. Pistol: I've read about I.V. fluids but that's not available to me, at least not from a medical practitioner. I have tried a drink by SIS, just an electrolyte mix, I even set my alarm at 0300 so I could take on extra fluids. I think it may of made a slight difference. Wintersown; The thing that frustrates me is that I can't talk to my Doctor in between apps. So if I find a medicine is causing me grief, normally after a week, I have to stop and then wait until my next app. This is why I'm keen to find things that I can try between. Clb75; I haven't tried a recumbent bike but I was given a rowing machine which I've been using. I find I can tolerate exercise much easier on the rowing machine than other forms. For me it seems that if I keep myself stress and pain free, from the neuralgia, then things are so much better. Cheers, Ragnar

Hi, I'm new here having been diagnosed with POTS a couple of months ago. Where I live I'm only afforded a ten to twelve minute appointment every eight weeks, sometimes longer with the secondary care GP here, not a consultant. Weirdly the diagnosis was most welcome as I've been suffering for over ten years but I've been told I've been depressed, anxious and many other misdiagnosis that we have to go through. I've also been told I have trigeminal neauralgia which is a real PITA when trying to cope with the symptoms of POTS. I've been prescribed Bramox, couldn't urinate so stopped and been given compression stockings, I was asked to consume huge amounts of sodium which only served to push my BP up to dangerous levels. I'm now trying Mirtrazapine, 15mg at night. I've also been given a prescription for fluoxocortisone (I think that's what it's called, I have trouble deciphering the GP's writing) I'm wondering, in the absence of timely visits to a Doctor, what was the single most non-medical action that altered the course of your POTS. I'm making sure I'm hydrated, 'clenching' when I transition from supine to standing and wearing my compression stockings but I'm struggling to manage to change anything. Thanks in advance, Ragnar