POTS and Fludrocortisone - please help

Posted , 6 users are following.

Hi there,

After a long time of suffering with fainting, constant diziness, palpitations, very low blood pressure, fatigue, gut problems and joint issues I've been diagnosed with POTS.

I'm relieved to finally have a diagnosis and an explanation for all my symptoms don't feel like I'm going mad any more but i now feel a bit lost and scared.

I'm currently bed bound at home can't work, can barely stand for a minute without feeling dizzy. I've been prescribed Fludrocortisone to take daily 50mg I understand this is a steroid I'm very scared of the side effects and the possibility of weight gain so feel anxious to take the tablets although I know they should help me, I also don't really know what to do now I don't feel I have any advice of support on how I'm supposed to manage my condition.

I would be very grateful if anyone could please let me know their experience with this medication and life with POTS if possible please? Thanks for listening xx

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4 Replies

  • Posted

    Low BP, gut problems and joint problems! Are you Hypermobile( very flexible)? Has the possibility of Ehlers Danlos Symdrome ever been mentioned to you?
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    • Posted

      Hi there,

      Thanks for the reply, the doctors haven't mentioned it to me but to be honest I haven't had a great experience with doctors until finally I've seen a consultant who diagnosed me with POTS without me having to mention it for once, I've read about ehlers danlos as I understand it can be linked to POTS but not really sure how I go about that and is there any treatment for it? I have had to go privately without insurance to get this far and can't afford much more but I'm just worried I don't really have a person I can go to that believes me getting to this stage has been so difficult. The only flexibility I have since I've been Young is that I can put me legs behind my head and cross my legs like on top of each other if that makes sense. My elbows constantly lock up and click so loudly about 30 times a day but I keep being told its nothing not arthritis because blood tests are normal and the joints aren't swollen but they are so painful I'm taking naproxen and amitriptyline but don't seem to work. My knees are sore too not as bad and my shoulders.

      Thanks for your help x

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  • Posted

    Hi laura

    Welcome to my world, i was also diagnosed only to be left with it, got most of my help from the internet and sites like this, i was also sent to the chronic fatigue clinic by my gp, and they have helped me with some of it.

    Mine is controlled mainly by lifestyle changes, your symptoms are severe at the moment, but they will settle, you can do things to help it, obviously with the CFS you need to rest, consider also taking Sertraline Anti Depressant, for the migraines if you have them! it will also help with the POTS, i am on a very low dose, if i try to stop it, my symptoms come back very bad, so end up back on it, cant say it does much for the depression though.............ha, i have had mine a long time so i needed help with that side of things, you could use it as a temp measure, with your symptoms being severe.

    If you find your weeing like a racehourse then you are losing blood volume, this is the water content from our blood, this will also affect blood pressure, and salts, so, you need to drink at least 3 litres of water per day to replace the water loss, but, you also need to take in salt as well, as the salt will help with retaining the fluid we drink, instead of weeing it all out, so our electrolytes also then go out of balance if we dont replace the salts, if you wake during the night feeling bad, drink a glass of water again, when you have your meals be liberal with the salt, eat some ready meals, they are loaded with it.  If your gut is affected with slow dijestion, you eat little and often, high protein, low unrefined carbs, avoid sugar at all costs until your better, and if you eat too much sugar later on, then you risk whipping your symptoms back up again, also avoid all caffeine drinks, and alchohol, stick to plain water.  Try 1 scrambled egg for brekkie with salt on, then something small for lunch like a chicken leg, nothing processed, eat small handful of plain nuts inbetween if this makes you feel worse stop it,  have a normal night meal, put salt on, drink water before and during your main meal, this will help your food to go through better, it will avoid gas build up, and bloat causing constipation and later on IBS symptoms, lie flat immediately after eating a large meal for up to at least 30 mins after, to help food go through quicker, if you find that even tiny amounts of food is 

    making your symptoms worse, then starve yourself for one day and start again.

    Avoid.............hot baths and showers, sugar, extreme exertion when better, too much water, and too little salt, any meds that make you feel worse, any food that makes you feel worse, can't do anything for period time as hormones are another trigger, standing for long periods, stress, smoking, and viruses, as all these will be triggers for your dysautonomia.

    When you find water stops making you feel better, that is because your body has righted itself, so you don't need to do it anymore, and when your symptoms happen again, you start the whole process off again.

    Our problem is, we have a malfunctioning Autonomic nervous system, affecting both the sympathetic and parasympathetic nervous systems in our spines, the sympathetic is responsible for our stress response, which is the fight, or, flight phase, so we have stress symptoms through the roof but don't know why! it is like severe PMT,  and that's also when are joints are  affected,  it is a result of messages going wrong from the brain to the sympathetic nervous system, and then after we have come down from the stress, we go into the parasympathetic phase which is known as the rest and dijest response, so everything  works slow, again due to  wrong messages from the brain to the parasymptathetic nervous system, sympathetic works too fast, and the parasympathetic works too slow in us, and what we have to do is, figure out which phase were in, then, try and put it right, harder than it sounds, but it will get better even on its own, and in some cases can go for long periods like mine has done, but always comes back,  but we can help it in the meantime with lifestyle changes, there is also an over the counter remedy called Bachs Rescue Remedy available from chemists, and it is apparently good for the stress symptoms, i also found Homeopathy remedies helped as well, but like everything it works for so long, then it stops.

    Hope this helps.   

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  • Posted

    I don't have POTS but I have suffered from severe salt wasting and autonomic dysfunction for 25 years. Florinef gave me my life back. I could not stand up or walk. Even passed out lying down eek

    I have been on Florinef without a break since diagnosed and I would not give it up. I also drink low cal Gatorade every day for sodium replacement. Discuss with your doctor. For me keeping my fluid volume is key to managing my symptoms and that means electrolytes.

    Good luck. It is hard but you can get your life back!

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