galatea

I get that at night or when resting after exercise, like a slow pounding. Who knows why it happens!

Hi smish, I would definitely mention POTS to your doctor, otherwise you’ll never get a diagnosis. You could ask for a referral to have the tilt test. You can look on the POTS UK website at the doctors list to find one in your area. The main place in London is in the National Hospital of Neurology and Neurosurgery – Professor Mathias’s clinic (although the wait is incredibly long). I had to change doctors many times until I found one that agreed to refer me, but I had to really insist as they kept on dismissing me. Most GPs in my experience, have never heard of POTS, and when you try to explain they’re very skeptical that it’s a proper condition. You could ask your GP to do a stand test to measure blood pressure and heart rate after lying down for 10 minutes, then after standing up for 10 minutes.

Did they get cold at any point? If my legs get cold even for a bit, then they ache for a whole week. What helps is leg warmers or wearing layers like tights under trousers.

Thanks Corina, yes I’m not sure what to expect yet, maybe they’ll say I should try it, maybe not. If I do, I’ll take into account the warming up thing so that it’s less painful. If it works it’s definitely worth it despite the injections.

I’m back from the octreotide trial but unfortunately didn’t manage to get much information. The person who did the tilt tests didn’t how the application process works, and the nurse who came and gave me the injection, gave it to me, said see you later, but then didn’t so I didn’t get to ask her either. I spoke to a registrar, who said she’d find out, but I didn’t get to see her again either, but she told me that it would take them about a week to analyse the results and then they’d send a letter saying whether they think it would be worth me taking it. She didn’t know if it’s prescribed from the hospital, or how long it takes, just ‘not too long’. Sorry about that! The first day they gave me two tilt tests, the second one after a milkshake, the second day they did the same, just before with the octreotide. To be completely honest the injection hurt more than an ordinary one. With the octreotide I felt much less symptomatic on the tests, but then I asked the general ward doctor to look at my notes and he said he couldn’t see that there had been any improvement in bp and heart rate with it, but he didn’t want to say anything for sure because he wasn’t the specialist. Anyway, just have to wait and see!

June, sorry for the misunderstanding, I didn’t mean to say that you should lower your expectations for getting better, the prognosis for teenagers is very reassuring, of course she should expect to get better! I meant it helped me in terms of day to day experience, not feeling bad about what you might be missing out on in the present.

I agree with Katybug, it would be great if you could do the Mindfulness together. It’s really important to share the same positive outlook as the caregiver, as in a way you go through the illness together. It’s important that you feel well emotionally too. It really changed my outlook on life for the better. One of the best things I learned was to lower my expectations of life while still seeing the positive, and to live day by day as much as possible. I hope that your daughter starts to feel better soon! It must be so terrible to be ill at that age.

The thing that has helped me cope best emotionally is something called Mindfulness. I think it was invented at first for people with chronic pain, but now it’s become very popular to help with depression and chronic illness. It teaches you to concentrate on the present and makes you enjoy and appreciate everyday things as well as to accept difficult situations in a non-judgmental way. I did an 8 week course, but I think you can buy the book and tapes.

Thanks for all the info, it’s really good to know. So you’ve been waiting ages to have it! That’s terrible, I was just assuming that since I was having the trial I’d go home with the octreotide. Now I vaguely remember it being mentioned that it’s really difficult to get the funding because it’s so expensive. I’ll let you know how it goes and if they tell me anything about how the process works.

Sure, I’ll let you know how it goes. Well it’s Mathias’ clinic, but I’ve only seen Dr Ingle. I don’t think Prof Mathias sees people on the nhs any more. (Although I saw him privately a couple of months ago)

Firstly, any idea why stairs are so unbelievably exhausting, more than other forms of upright exercise? And d'you think that we should avoid them or that we shouldn't because they’re good for building leg muscles?

Thanks for the reply, very encouraging. Yes, I’m in the UK. I have no idea how long the hospital visit is going to be, hopefully not long.

I’m counting down the days till I go into hospital for Octreotide and am really nervous. How does the trial work and any idea why I have to be in hospital rather than just be taught to inject and then go home?

Do you get palpitations when you stand up and do you find it hard to stand up for long e.g. in queues? If you do it could be POTS, but the only way to know for sure is by having a tilt test, so maybe discuss with your doctor and ask to have the test. Unfortunately symptoms of so many illnesses overlap so it’s quite hard to get a diagnosis, you just have to keep on pressuring doctors to give you tests until you find out what you have. Best of luck!

Just an update on how I’m doing with the Mestinon so that there’s no false impression. Since I wrote my previous comment, it’s like I’ve ‘crashed’ in terms of fatigue. I feel like it kind of had an over-stimulant caffeine type effect and now I’m more tired than ever. I don’t think this is the drug for me long term! Glad to hear some of you have had more positive effects though. I was thinking about trying Modalfinil myself, but wouldn’t risk it as I’ve read how it can damage your sleep architecture and cause sleep disorders long term. http://www.theguardian.com/education/mortarboard/2013/may/31/is-modafinil-safe-in-long-term

Thanks for the replies. What you say about the effects wearing off sounds familiar. When I first started, each time I would increase the dose I would feel slightly better that day, but after that no difference.

When I was at university I managed to spread the course over more years and go part time (I had to give up eventually though but only because I got drastically worse, no reason this should happen). I would recommend as soon as possible to register with the disability office, see one of the staff and explain the condition properly. Also, make sure all the tutors are fully aware and understand exactly what it is. I was given all sorts of equipment, mostly unnecessary, including a voice recorder to record lectures, just to make things easier. (They even offered to hire someone to take notes for me if I was too tired to go). You could maybe ask for recordings of the lectures to be sent to you. Most importantly, ask for a person to fetch books and make photocopies so you don’t have to exhaust yourself book-hunting in libraries. I pretty sure they would offer this anywhere as they have to cater for students with all kinds of disabilities.

I came off Midodrine 3 weeks ago after feeling no improvement with it, but now I have more tachycardia and blood pooling than ever before. I’m wondering if this could be because of dependency on it or that it was actually helping me, but that I’ve just got worse over time? Any theories or similar experiences?

I started taking it 3 weeks ago, and have been on 60mg three times a day for the last week. It’s been absolutely amazing for me. My main problem is fatigue, especially mental fatigue, and for the first time in 3 years I’ve been able to read properly. Before I was on it, I couldn’t even concentrate on a page, now I’m reading several hours a day (with constant breaks every 15 mins/ 1/2 hr). So far no side effects. However, it's been no help with tachycardia, blood pooling or blood pressure.

Maybe it’s Vestibular Migraine, or Migraine Associated Dizziness. I have it and it can cause chronic dizziness, eye pressure, light sensitivity, and goes with a tendency to car sickness.

I’ve just read this which should be of interest to any sceptics out there: http://www.huffingtonpost.com/dana-ullman/luc-montagnier-homeopathy-taken-seriously_b_814619.html Has anyone else tried homeopathy? I’ve been taking ‘Belladonna’ homeopathy for several months, so far no effect, but it’s a long treatment. My aunt who's a doctor and a homeopath gave it to me, I think it's given for dysautonomia generally as well as POTS.

Maybe heat, changes in barometric pressure – especially stormy weather, not having done exercise for a while?

I’m 22 and also seem to have gotten worse with time, so I sympathise fully. Rubbish time in life to be chronically ill, although any age probably presents a different set of challenges. There's no reason to think that we won't improve soon though, if that's what doctors say is usual.

The full length ones gave me nausea, but after reading these, I think I'll try the shorter ones.

I would ask your doctor to refer you to have a tilt test which is the only way it can be confirmed and diagnosed. I had to change doctors several times before I found one that would refer me, so if they refuse, really insist, and if necessary try another doctor. http://www.potsuk.org/ This website has a section on pots for doctors.