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  1. The problem I have is, I can’t seem to titrate down at all from it. Even slowly. I become so unwell that I feel like I should be in hospital if I try and stand. Really poorly. Has anyone else had this experience? Is my body reliant upon this drug now? X
  2. Hello, not sure if I’m posting in the right place but could any of you help me with a persistent side effect I’m having from Fludrocortisone? I am experiencing terrible water retention/oedema from this drug. And I cannot seem to reduce the dose without falling really unwell and not being able to remain upright. Even if I try and taper down very slowly, my body seems to freak out and I get tachy/adrenaline/weak/fatigued again. Basically unable to function. It really has been a miracle drug for me, in terms of being able to function again. But the water retention is really uncomfortable. My clothes are so tight, I look and feel terrible. It is really noticeable and worse in the heat/warm weather. I also table salt tablets alongside fludro but again, it I try and decrease these, even slightly, I become unwell again. I’m sorry if this problem seems minor, I am very fortunate that Florinef works well for me, but I am really getting quiet uncomfortable, and it gets worse as the day goes on and especially right before my period. Any advice would be very much appreciated, Thanks Cate x
  3. Hello, Just a couple of questions; does anyone have any experience of midordrine causing intense brain fog/feelings of unrealisation? The drug has helped me be upright for longer periods of time but I was expecting more mental clarity with (hopefully) more oxygen to my brain but it seems the opposite is happening and my mental clarity is much much worse. I also take Fludrocortisone, salt tablets and an electrolyte supplement in the morning - does anyone have any explanations as to why this might be happening? Also, I am due to start a week long work experience placement tomorrow. It is unpaid but I am required to be there from 8.20am until 5.20pm - I haven't worked in over 7 years but want to give this a go. I realise this is jumping headlong in at the deep end but does anyone have any tips for keeping upright throughout this time/working with pots syndrome? Many thanks in advance, Cate
  4. Oh and to answer your question... I think it's possibly just fluid retention as my actual weight hasn't changed but my clothes feel tighter and I have gained around my middle especially. It's quite noticeable 😞
  5. It's really strange in the beginning I had a fantastic run of a few weeks where I didn't experience fatigue anymore and didn't need to nap during the day any more. It also helped my brain fog loads. The main thing that definitely improved though and to a certain extent is still improved is that my vision stopped blacking out when I stood up - what could this mean? But then the doctors added Ivabradine to target my tachycardia and I've never really been the same since as far as the fatigue is concerned. The Ivabradine really set me back. They then tried me on midodrine and I experienced the jittery feeling which I put down to increase in tachy. I'm so confused... I just want to know what's wrong with me. I haven't even been given a proper diagnosis. They just threw around terms like 'possible POTS or SNVT...' I don't even know whether I have hyperadregenic pots or autonomic problems caused by diabetes causing postural hypotension. Or if I just have pots cause by low blood volume, because my diabetes isn't poorly controlled. I've even heard of people who have just been diagnosed with dehydration because there body doesn't retain water properly which causes pots like symptoms - sometimes I wonder if I could simply have this. Confused :-/
  6. Oh wow.. Thankyou for pointing that out. I have been feeling a little down since I was under the impression that I definitely needed the Fludrocortisone, and so was pretty much stuck with the drug and all its side effects. Perhaps I was just experiencing withdrawal. I did try and stop it pretty abruptly. I tried to discontinue Fludro because I was experiencing hot flashes... Which is where I am at right now; the drug has once again gotten into my system and is causing unpleasant hot flushes and weight gain :-/
  7. When I had my 24 hr blood pressure monitor cuff, I was told that my blood pressure runs, on average, low. But then at times I can feel awful and have tested and have had a perfectly normal blood pressure reading... I suspect that somehow not enough blood is reaching my brain however because I always have brain fog, (the fludro has helped slightly with this). I also have racing thoughts and feel jittery. Especially at night. I always wake two hours after falling asleep feeling jittery which I have always assumed was the tachycardia? Cate
  8. Thankyou for your replies. I was started on 2.5mg twice a day.. But started on half of that only once a day in the morning. I was the same on beta blockers couldn't even tolerate a very small dose of beta blockers. I have since tried midodrine and I'm unsure if I am getting any benefit from it. I haven't had any crashes like I did on the Ivabradine but I feel really jittery on it, like I have had a very very strong cup of coffee... Does anyone know why this would be? This was also on a very small dose too. I have had no tests done to determine what type of pots I have. I know Fludrocortisone is doing something for me because when I try to come off it, I feel dreadful and am almost bed bound. I am on 0.2mg of Fludrocortisone and am gaining weight fast :-/ if Fludrocortisone is successful for me? Woukd this mean I have low blood volume pots? But then sometimes I think I have hyperadregenic because I have so much anxiety and adrenaline all of the time. I'd really love to get to the bottom of what's going on. I am feeling so disheartened with it. I seemed to have a run of a good few weeks where I felt really well on the Fludrocortisone but since they added Ivabradine, I seem to have fallen backwards and am feeling awful and fatigued again; especially after eating, the fatigue is debilitating. Does anyone have any suggestions? I am unsure whether I am supposed to be trying to slow my heart rate down with Ivabradine or if I should be dilating my blood vessels with midodrine. I'm exhausted with it - would Midrodine with a beta blocker be an option? Cate
  9. Hello Everyone, I haven't been officially diagnosed but my cardiologist thinks I have POTS or something called SNRT and has put me on Fludrocortisone. Which has made a great deal of difference and I felt so much better but was still tachycardic. He wanted to start me on Ivabradine as I couldn't tolerate beta blockers, they made my limbs feel heavy and I was so fatigued that I couldn't function. My GP said this could have been because they dropped my blood pressure even further. I was so excited to try Ivabradine, not least of all because I've read on the internet that it was supposed to be a miracle drug for pots. I was so looking forward to losing the brain fog and the racing thoughts and adrenaline rushes. But after being on the drug for 2.5 days, I had a really bad experience whilst driving. Initially it seemed promising because the jittery feeling that has been with me for the last 6 years disappated but then after lunch yesterday I suddenly felt really drained and like I couldn't keep my eyes open. I was afraid that I would fall asleep at the wheel so I went for a lay down at my sisters house. I fell asleep but it felt like I was sleeping really deeply, at times I was afraid I was losing consciousness then I would wake with a jolt and my body would be flooded with anxiety. When I went to bed last night the same thing kept happening until eventually I drifted off around 3am. it felt like a similar reaction to how I've responded to beta blockers in the past, only much worse. I felt flooded with adrenaline, like I needed to crawl out of my skin. But at the same time completely and utterly exhausted. I'm confused as to why this happened? Do you think midrodrine might be a good alternative? I wanted to try midrodrine but my cardiologist said it would probably make my adrenaline rushes and tachycardia worse. I'm so confused as to what could be going on and so upset that j seem to have fallen backwards after feeling much better on my steroids, as today I feel unwell again :'-( any thoughts would be much appreciated, Thankyou, Cate
  10. Hello.. I am yet to be officially diagnosed but I am pretty certain I have some form of dysautonomia. My consultant has referred me to cardiologist for tests for POTS syndrome. It has taken around two months for the appointment to come around, in which time I have been quite unwell. I also have type 1 diabetes and am fearful that this is the cause of my dysautonomia. I have been trying to get tighter control of my diabetes by trying out a ketogenic diet, whereby I eat very little carbs and lots of fats and proteins. Each time I try I get to around day four and I crash. I feel so unwell and weak and usually end up binging on carbs as my body is craving sugar. I have consulted other forums about this and they tell me it is just something called 'keto flu' but I don't think I am conveying the severity of how unwell I feel. I fear that if I continue eating that way I may collapse or end up in hospital. I know this has something to do with how much fluids are lost on a diet like this and also potentially an issue regarding an electrolyte balance upset. But I am in a catch 22. if my dysautonomia symptoms are caused by uncontrolled diabetes then I really must try and adapt to a keto diet as my control becomes perfect. Which is what I need if I have a chance at trying to heal, or at least get control of my dysautonomia symptoms. But adapting to this way of life is making me really really unwell, to the point I am unsure whether it is safe to continue. Has anyone else with pots or dysautonomia adopted this kind of lifestyle? And if so, how did you adapt? Thankyou so much in advance, Cate
  11. Hello All, I'm new here and new to dysautonomia and feeling very scared. So please go easy on me 😊 I have been referred for tests for POTs and diabetic autonomic neuropathy but I am 99% sure of this diagnosis already. I have also been given Fludrocortisone as my blood pressure is low and my vision goes black when I stand. I'm also exhausted all the time; struggle to stay upright for prolonged periods of time, have to nap after eating, have racing thoughts and can't cope with sensory overload situations, can't tolerate heat or exceed use. Basically the usual dysautonomia symptoms. One of the scariest symptoms for me is my vision problems/brain fog. It was actually one of the first symptoms to surface. I say vision problems/brain fog because I don't know where one stops and the other begins; I get a lot of floaters, in particular if I have been looking at something quite bright. But my eyes don't seem to adjust to light. Even on an overcast day I really struggle and everything seems too bright. It's really quite scary. I also struggle witth brain fog which is kind of like an 'unreal' feeling which I have assumed is because my brain isn't getting enough oxygen because of the blood pooling in my legs etc. I wondered if anyone has received treatment successfully for this or if anyone has found anything that has helped them? I'm really frightened and really apprehensive about what the future holds for me. Please can anyone give me hope that it is possible to live a normal life again? I dream of being able to do the things 'normal' people do like going on holiday or shopping. And I'm scared to death I may never have a family or a career because of this. Does it get better? Any messages of hope would be so much appreciated, Cate
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