Macca

Hi Freaked Really sorry to read about how your parents are treating you and like the others who have posted here, very concerned for you. Your earlier post noted that you live in Ireland and I did a google search on the social welfare system over there (I live in Australia) and thought I'd pass on this link to the Irish citizens information website, & in particular a link to information about respite care for people with disabilities: http://www.citizensinformation.ie/en/health/health_services_for_people_with_disabilities/respite_care.html It might be worth talking to someone at the citizens information service about your situation, to get advice about what options you have in regard to care as a disabled person etc. I wish you all the best and hope things improve for you.

Hi MamawithPots It took me a few months to adjust to being ill and that was a hard period. When I first got ill I was bed ridden for a significant amount of the day, just able to be up for a few minutes at a time. That said, after a few months I decided Pots wasn't going to beat me and that there was still enjoyment in life. I focused on the positives, particularly my two children. While I couldn't take them to the playground, I could still spend time with them, reading, playing board games, watching movies etc. I also took up some part-time distance education (that I could complete on my laptop in bed) that kept me feeling like I was making progress in life despite my illness. I also decided that I would take whatever physical capability I had and do what I could every day to be upright and to expand my envelope of functioning through graded exercise. At the start I did this with the help of an exercise physiologist. Over the past three years I went from bed bound and only being upright a few minutes a day, to returning to work and doing 30 minutes of cardio exercise most days. I am still symptomatic, but it's significantly improved. In addition to the wonderful DINET forum, there is a great blog written by my fellow Aussie, Michele, called "Bob is Dysautonomia". The blog that some excellent information and inspiring, funny posts from the woman who writes it. She is severely affected with a progressive dysautonomia, but still sees the enjoyment and humour in life. If you're interested a link to her blog is below: http://bobisdysautonomia.blogspot.com.au/?m=1 All in all I think acceptance that you are sick, but a determination to not let Pots define your whole life is important. Don't focus on what you have lost, but focus on what you still have (eg children, family, friends etc) and fight for your recovery. Hope that helps. All the best!

Hi Blobbydogger - sorry you're having a difficult time of it with your partner. When I first got ill it was hard for my wife to understand it and she similarly got upset when I couldn't keep up & couldn't help with the kids as much as I wanted to. But as time went by and my doctors confirmed the diagnosis (& she saw TTT results etc) then she began to understand. I think it's a real challenge for our partners to come to grips with such a complex condition, especially when it impacts your whole family. Perhaps it would help if she came to some of your appointments with the doc or the upcoming TTT. Sometimes hearing things from a specialist helps to get across how severe POTS can be. I also found that sometimes I just asked for a hug and explained I needed some emotional support. In doing that my wife also noted that she was living through my illness too and also needed support. Anyway mate, wishing you all the best.

Hi Blue I am guessing you are in the eastern suburbs, somewhere near Rushcutters Bay? Being able to walk to Sydney harbour is a fantastic option, it is such a beautiful place. From what you were saying it seems like you've explored most of your options for reduced healthcare costs. That said, wondered if there any chance you're eligible for a Centrelink pension and healthcare card? In any case, wishing you all the best. Enjoy the beautiful Sydney weather and the harbour!

Hi Blue I'm from Australia too. Any chance you are in Melbourne? If so, then Dr Chris O'Callaghan at the Austin Hospital has a blood pressure clinic that specialising in POTS and they bulk bill. They can also organise blood tests as needed through the Austin pathology and that is also bulk billed. If that is not a viable option for you, it might be worth asking your GP if they will consider bulk billing given your significant costs. Your GP can also request any pathology is bulk bill as well. You probably also know that you can register for the Medicare safety net, which will significantly reduce your out pocket expenses when you hit the threshold. Hope that some use. Take care .

I am on midodrine without a BB. Do ok, but it's short acting so still feel symptomatic as it is kicking in and then wearing off. My doc sees BB as a last resort, as finds it generally will make people with POTS worse.

Hi, sorry you had a bad night. I get these sort of gastric issues all the time. The thing that has helped me the most has been the FODMAP diet that was developed by Monash University here in Australia. It basically involves excluding foods that are known to cause problems for people with IBS - eg bloating, nausea, motility issues etc. You can find more info via the following link: http://www.med.monash.edu/cecs/gastro/fodmap/ There also a really useful app that helps you check what foods are OK. I also got help from a dietien who put me on the diet and I suggest seeing a dietien is helpful. The diet has been really helpful amd completely resolved the bloating, but unfortunately I still get occasional periods of nausea and poor motility. For motility issues Mestinon has been helpful & for nausea anti nausea meds like Stemetil (but have to be careful with Stemetil due to potential side effect of low blood pressure) :-) . Hope that helps.

Interesting. Thanks for sharing! I didn't fully agree with his view on Mestinon, it's been really useful for my POTS, not just for G.I issues.

Thank you for the replies. I tried half a 2.5mg tablet and had an allergic reaction to it! So DHE was not a winner for me.

Hi, thanks for the comments. My doc has prescribed a 2.5mg tablet, not the intravenous method. The info with the tablets note that it's for migraines and severe orthostatic hypotension.

Hi everyone, my POTS doc here in Melbourne, Australia has recently prescribed dihydroergotamine (brand name Dihydergot) as a vasoconstrictor. I am really interested to know if anyone else has tried it and what the experience has been. I've had problems tolerating the more common treatments such as Florinef and Midodrine, but some success with Mestinon. So, my doc wants me to give this a go. Thanks for your help.

For me a flare up is when my symptoms get significantly worse for a few days or longer. I've recently had my worst flare since I first got sick; it has lasted 3 months and I was close to having to give up working (again).

I have no side effects and find them really useful, particularly on days I am at work. I am intolerant to most medications so stockings provide a good alternative.

I found exercise great for heart rate, BP and for improving fatigue, but also didn't really get any improvement with my gastrointestinal symptoms. The best thing I have found for that has been to do the FODMAP diet that was developed here in Australia by Monash University. http://www.med.monash.edu/cecs/gastro/fodmap/ The university also have a good phone app that you can download that guides you on what foods you should avoid on the FODMAP diet.

I started with walking, I could only manage 3 mins a day at the start, but worked my way up to 45 min fast pace walk over about a year, plus added in other exercise (swimming and some strength work). With the walking I tried to increase the time by 20% each fortnight. I had some flares that set me back along the way, but always kept up some exercise even if I had to do less than before. I also found it useful to split my exercise so that I don't have to do it all in one go. My exercise physiologist said the key was to establish an initial base line of exercise at the start that meant you didn't feel worse for it and then gradually expand from there. All that said, when I started exercising I didn't have a POTS diagnosis and I think if I had, then I would have focused on recumbent bike or rowing machine as I would have been able to do more exercise than I could walking.

Hi, I tried the plugs & found the results mixed. They certainly helped to reduce dry eyes, but the tears were too much really and my eyes looked liked they were watering all the time. I tried two sets and found the first ones really uncomfortable, but the second set were good. Both sets of plugs I tried were temporary plugs so I could see if they worked for me.

Sue1234, my blood pressure varies a lot. It can be low, normal and high (sorry not very helpful). My neuro certainly felt that Mestinon would be good for slow g.i, but that hasn't been a significant issue for me.

Mestinon gives an improvement overall including dizziness, fatigue, tachycardia and seems to calm down the sense of sympathetic nervous system over activity. I really like it and there are plenty of posts from others in this forum with good experiences using Mestinon.

I have tried Midodrine and Mestinon. I had a similar side-effect with the midodrine, but I had pretty good results from Mestinon, it just took a couple of weeks for my body to adjust. So many of us a sensitive to meds and find it hard to find effective treatment, but please don't give up! It sounds like you have a doc who is exploring options for you and you just might have success with Mestinon.

It took me 15 months to get a diagnosis and I had no treatment over that period. I felt so ill during that period that I had to stop working six months after the illness began. I'm based in Australia and have income protection insurance, so I was able to claim 75% of my pre-illness income. That helped a lot and meant I could focus my efforts on recovery, in particular graded exercise and pacing myself. My symptoms have gradually become less severe and I've found reasonably effective medication, so I was able to return to work. I do a desk based job and now I just need time off every 3-4 months to deal with a 'flare' of symptoms.

Sorry, I should have also mentioned that there is a range of medication options (lots of which are discussed on this Forum, eg Florinef, midodrine & mestinon. For many people it can be tricky finding the right medication(s), but they can certainly make a significant positive difference to your level of functioning.

Hi Rima1 I have found this forum to be an excellent source of support and information - I hope you do too. In regard to pushing it and crashing: my personal experience has been that I have to be careful to pace myself, and slowly but surely increase my level of functioning. I have found that pushing it is counterproductive and can lead to a longer term set back, which has happened to me on a few occasions. I also have seen an exercise physiologist who specialises in POTS, and he recommends carefully balancing activity and rest, plus ensuring that you exercise. It is hard work as it requires lots of discipline and life gets in the way, especially with young children (I have two very active boys), but pacing has made a really positive difference to the severity of my illness. Good luck!

Hi all, I've found an article on some research from the Uni of New South Wales here in Australia that confirms their recent findings on the link between CFS and autonomic dysfunction. It can be found by googling: "Professor Andrew Lloyd CFS Autonomic System Under Stress" My specialist who treats me for POTS certainly feels CFS and POTS are both forms of Dysautonomia.

I see an execercise physiologist who specialises in POTS. When I have a flare up he has recommended that I try and confirm the cause. If it's due to a virus (flu or cold for example) then I take easy until the virus passes and then start exercising again, but at a level a bit below my previous base. If the flare up is due to overdoing it, then I try hard to pace myself so that I keep exercising (& avoid deconditioning) while get enough rest through the day and then slowly but surely work my way back to my previous level of functioning. If I can't figure out the cause of the flare then I find a level of exercise I can achieve without making things worse and also balance rest. Ultimately what I find important is to pace yourself carefully everyday and gradually climb out of the flare with exercise and support from your medication (I use midodrine and mestinon) and I also use compression stockings as needed. It's not easy, the flare ups can knock you back mentally as well, but it's important to stay focused and positive that you will get through it.