Guest KiminOrlando Posted February 22, 2017 Report Share Posted February 22, 2017 Hi Kat. I don't know any home remedies that really work. Fluids. Salt, but if you have high BP, salt could be bad. Some say exercise works for them but can take a long time to show effects and short term cause more problems. I have read that there are diets that can help, but don't work for everyone. I don't know how quickly they work. Many of us can't work simply for that reason. This illness isn't just hard on us. It is hard on the ones around us because we can't be who and what we used to be. The specialist is likely going to be your best bet. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted February 22, 2017 Report Share Posted February 22, 2017 I don't have any really great answers for you but I feel for you as I understand your desperation. I hope by sharing my experience it gives you some hope for the future I am really sorry you are having such a hard time . From my GP suspecting POTS to getting a TTT took almost two years where I could not function . I was in a state of desperation and frustration as I never thought I would get better . During this time I spent a lot of time resting because of pain, exhaustion and dizziness, my BP was always very low even on florinef although it did help a small amount in the beginning but exasperated my migraines to a daily symptom for many months. I found doing nothing made my symptons worse but then so did standing ! However every 45 mins after resting I practised standing legs crossed and clenching bum and leg muscles I also kept up with floor exercises for legs and abs, I couldn't manage to work my arms as it caused severe pain and pins and needles. I was already on a fairly strict diet due to my autoimmune issues so I tailored it even more. It was a a painful very slow process resulting in small improvement but gradually I was able to do light chores for a very small amount of time. this ability, crept forward at a snails pace with setbacks along the way! It is mentally demoralising to be in this situation , it takes time to adjust to the new you and I had to change my mindset from anger at myself and frustration to been pleased I had actually managed to do one load of washing that had taken me all day! I took inspiration from others here who offered support, kind words and reported improvements in their quality of life over time I held onto that hope and fought hard to see a POTS specialist. I just hope you find Answers really soon to help you move forwards . Three years on I have improved and I have learnt to take each day for what it is , I have become an expert in prioritising! Hang in there , big hugs to you! Quote Link to comment Share on other sites More sharing options...
yogini Posted February 23, 2017 Report Share Posted February 23, 2017 Did you feel better on midodrine at all before you got the hives? It seems hard to know whether the midorine caused the hives because you didn't get them the first time you tried the medicine, rather 4 days after. It is a short-lived drug which I don't think builds up in your system. If your doctor says to retry it, this may be the reason and maybe it is worth trying. Unfortunately it can be a bit of a process to find the right treatment - no easy answer for most of us. Hang in there. Quote Link to comment Share on other sites More sharing options...
katcanny Posted February 23, 2017 Author Report Share Posted February 23, 2017 Thanks Kim,dancer65 and yogini! I was up from 12:00am with shortness of breath until about 4:00am which was then followed by a cold sweat either going to vomit or faint tachycardia and then felt so shaky and horrible! So by then time it got to 5:45am when my partners alarm goes off I was awake and a mess! My mum took me to ER and they contacted my specialist who said not to keep me in hospital it would make me worst? (Maybe the laying in a hospital bed) and so I was there checked over and sent on my way! I am so over feeling this crap but I did get another appointment with my specialist as soon as next week so that's a bonus! Try and take something positive from this experience! So to reply I don't think I will try midodrine again it didn't make me feel better I was out of it for the four days I had it and I never break out in hives or any rashes ever and it made me so irritable and angry at everyone and everything! Not one that works for me! Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 23, 2017 Report Share Posted February 23, 2017 It's amazing how medication can affect us so much. I'm sorry this bothered you =/ I hope they can help you another way Quote Link to comment Share on other sites More sharing options...
Macca Posted February 23, 2017 Report Share Posted February 23, 2017 Hi Katcanny Sorry to hear that the Midodrine isn't working for you. While it is disheartening to have nasty side effects, there are other medications that Dr O'Callaghan can and will try for you. I didn't have the best reaction to Midodrine either (though not a severe as yours) and when I went back to Dr O'Callaghan he noted that we would work through the list of drug options until we found something that worked and that's what we did. A drug that has been excellent for me is Mestinon. Dr O'Callaghan normally doesn't prescribe it, but it was happy to let me try it. All the best. Quote Link to comment Share on other sites More sharing options...
katcanny Posted February 24, 2017 Author Report Share Posted February 24, 2017 Thanks Kalamazoo and Macca, its getting really hard for me at the moment I'm about to lose my job because of this stupid illness and possibly my partner. We have been through a lot in our relationship and this has sort of sent us over the edge and trying to look after my 10 year old on a daily basis when I am having a bad week is so hard because I can get so cranky and all I want to do is be back to normal and kick around a footy with him or play cricket with him and at the moment just playing a card game and getting him ready for school is exhausting at the moment I really hate myself and the life I am living and the life I missed out that I should have lived while I had the chance! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted February 24, 2017 Report Share Posted February 24, 2017 Hang in there, Kat. Things will get better, this illness requires a great deal of strength and courage which your displaying every day. Would your partner be willing to go to your specialist appointment with you? Sometimes it can help if a doctor explains the complexity and difficulties that are faced with this condition. Quote Link to comment Share on other sites More sharing options...
Macca Posted February 25, 2017 Report Share Posted February 25, 2017 I feel for you Kat. It's really hard to adjust to losing so much physical capability; hard for you first and foremost, but also hard for your family. I think Sarah's suggestion to take your partner to your appointment with Dr O'Callaghan is a good one. My wife came to my tilt table test and that was a big eye opener for her. I also found it hard not being able to play with my kids the same way I had done previously. Importantly, my kids understood that Dad was sick and I found that over time I was able to find other things I could do with them that were within my physical limitations. In regard to your job, there a two key things I would recommend: 1. Check the Fair Work Australia website in regard to your rights and termination of your employment due to ill health: http://www.fairwork.gov.au/leave/sick-and-carers-leave/long-periods-of-sick-leave You can also call Fair Work (or your union, if you are a member of one) if you need to check on your rights. 2. Ask your superannuation fund if you have income protection insurance. Most people do as it is provided by default. The insurance will provide you a replacement income if you lose your job, or if you run out of sick leave. The rate of payment is typically 75% of your normal salary. Finally, try to stay strong! You will have hard days, but for many people POTS gets better over time. When I first got POTS in 2011, I lost so much physical ability and I was essentially bed bound. As a result I had to take a year off work. Slowly but surely things have improved and I have gotten a lot better. I returned to full-time work in 2013 and I'm fitter now than before I got sick. It's a slow recovery and I found that I had to accept that and focus on having the best life I could. Best wishes. Quote Link to comment Share on other sites More sharing options...
goldicedance1 Posted February 26, 2017 Report Share Posted February 26, 2017 Oh, my goodness. Florineff! Ouch....landed me in the hospital with intractable migraines. I don't it was the Midodrine that gave you the headaches. I am on a whole regimen of drugs--Pristique, labetalol, Topamax (to prevent migraines) plus Midodrine when needed. Perhaps a lower dose of midodrine. Also have you tried increasing salt in your diet. What about support hose, or better yet compression hose? How about sleeping with a slanting up pillows? You can have POTS with high blood pressure that falls when you stand. That is how much started out. Good luck in finding a regimen that works for you. Quote Link to comment Share on other sites More sharing options...
Arez2row Posted February 27, 2017 Report Share Posted February 27, 2017 I think sometimes its trail and error, and finding the balance that works for you. You definately have to 'stick out' the midodrine side effects at first, but they do ease off (ie. tingling scalp, etc.). They do come back everytime you titrate up the dose though, but then they ease. Im currently dealing w a massive POTs flare (along with other conditions) and trying to 'find my balance' again. Its a struggle for sure, I feel you on that.. but stay positive, relief always comes in time. Best wishes! Quote Link to comment Share on other sites More sharing options...
katcanny Posted February 28, 2017 Author Report Share Posted February 28, 2017 Thank you for all the encouragement and support from everyone, I am going back to see the specialist tomorrow and hopefully try something else as the midodrine really wasn't good for me I didn't mind the tingling and goosebumps but the rash, shortness of breath and irritability was horrible I didn't feel like myself and it lowered my blood pressure instead of making it higher so it must just be my silly body reacting to it! I don't know what will be the next course of meds? What did other people progress to after midodrine? The florinef makes no difference to me I don't have any side effects but it doesn't really do anything to help me. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted February 28, 2017 Report Share Posted February 28, 2017 My next step was Northera. It is CRAZY expensive in the states. Don't know if it is even approved where you are. It is also known as droxydopa. Good luck and keep us posted. Kim Quote Link to comment Share on other sites More sharing options...
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