My Pots and Af symptoms

I thought I would do a blog about the symptoms that I get from pots and AF, and the way that they affect my life.

My worst symptoms from pots are definitely the chronic dizziness and the brain fog. Both of these symptoms are horrible and after speaking to many other pots suffers, they seem to be quite common symptoms that some people have had for a long time. I am really hoping that if my doctors put me on different medications then it will help with my dizziness, as being dizzy can at times make me feel like I don’t want to go out the house, as I don’t feel normal and at times it can make me isolated. When I talk to people I feel spaced out at times and have to really concentrate to listen to what people are saying. All of this combined makes my anxiety just that much worse.

I have recently started suffering really badly from chest pain, which at times can be really scary and, when I have it can result in me attending A&E or calling out the paramedics. The reason why I get scared is because I think ‘how do you know that when you are getting chest pain it’s just a pots symptom and not really something else wrong?’  Actually, with all of the pots symptoms I have, I get concerned that one day I am going to have real emergency and just think it a pots symptom.

While these are my main two symptoms I do also suffer from a low heart rate, tiredness and heat intolerance combined with the inability to walk far without more dizziness and feeling faint.

With regards to my Atrial Fibrillation, my heart will race and become completely irregular. I will get palpitations that feel like my heart is stopping and starting and missing beats. The strange thing is I only really go into AF when I am about to go to sleep or resting. This makes me really scared at night which means that I have nights where I rely on my TV (which may I add is rubbish after 12.00) to keep me company.

As mentioned as I asked my fellow Pots suffering Facebook friends what their main symptoms where and a lot of them had the same symptoms as me, including my AF ones.  So I can’t help but wonder if Pots has bought on my irregular heart rate.  There are so many other symptoms apart from the dizziness, palpitations, chest pain, feeling faint, tiredness and insomnia but these are the mains ones. But let me know if there are other symptoms you feel are worse or maybe don’t bother you as much.

The dreaded school holiday

Any parent or career, actually anybody with kids in their family, knows that the kids summer holiday can be a stressful, and enjoyable, long six weeks. Today is the last day that my kids are at school and then tomorrow we start the holiday season whoop, not.

This summer holiday is going to be different as usually I plan loads of adventures for me and the kids but since I have been diagnosed with pots, some days I have no energy and due to my dizziness I find it hard to get out. 

This year is going to really be different for me and the kids and I’m quite worried on how it will affect us as a family, I am going to try my best to get out. I’m secretly hoping it rains a lot so I can blame us not going out on the rain but knowing my luck we will have a whole summer of heat wave. My son is 7 and quite vocal when he is bored and I’m really worried that if I have a bad pots day he will become annoyed and think I’m a boring mum I really don’t want ruin their school holiday.

I will keep you guys posted on our summer experience but if any off my fellow POTSIES’ have any advice for me it would be much welcomed.

Wish me luck I’ve got a feeling I will need it. 

good days and bad days

The last few days have been difficult, stressful and strangely good. Over the weekend I started a new medication called ivabradine, which is supposed to help with my pots symptoms, but instead it made my heart rate really low and made me so dizzy I was really scared. I think I was so excited to take the medication in the first place as my Pots nurse said some people had good success rate’s on it, that I really believed that this tablet was going to cure me. Very naïve I know ;). When it didn’t work I just remember going back into the mood of feeling sorry for myself again, like the world was against me. Thinking ‘why me’. I know there are people out there that have much worse issues than me, but when my pots is really bad I tend to over react at times.

So, first thing on Monday I emailed my nurse and she tells me to hold off on the ivabradine, while she consultants with my cardiologist,  these are the third tablet that have lowered my heart rate so I don’t know what they will try now but I will try anything.

I have read on the Pots Facebook page that swimming is a really good form of excises so I decided to give it a go. So I dragged my sister to my local pool to it a try. And I must say I loved it. I felt weightless and pots free for the first 45 minutes that I could last in the pool (yes when I came out I felt the pressure run to my legs and I felt dizzy but I didn’t care, I was still high after my swimming experience..)

So after a positive morning swimming I decided to test my luck and go food shopping, something I had not been able to do for a long time due to my dizziness and my inability to walk far. But I am happy to say it went well and I feel extremely proud of myself. It is very weird, a few months ago shopping was just a part of my daily routine and now it is like a big accomplishment. I feel like I want to shout from the roof tops that I had a good pots day. (I know over exaggeration again but I really am proud).

I actually started the blog today after these events as I felt that I wanted to tell other suffers of Pots that while we all have really bad days when we do have a good day we should embrace it and feel proud of the small steps we make. I don’t know how I will feel tomorrow I might well pay for my adventures today but I am feeling just a titch bit more positive.  

Being Diagnosed with POTs

Being diagnosed with POTS was such a long and extremely stressful, upsetting process. I had started to faint and was feeling dizzy for around a month. I had been to my doctors and 3 different hospitals and all I was told by medical professionals was that I was suffering from anxiety before being placed on anti-depression tablets. While this was going on I was suffering daily from chronic dizziness, chest pains and palpitations. Deep downI knew that while I did feel anxious, this was something more.

In May I went on a family holiday to Spain, which I was so excited about, but it turned into a disaster. I collapsed in our hotel room after two nights and spent the remaining time in hospital, which was a very scary experience for me and my children. unfortunately even these doctors insisted i had anxiety.

Two days after arriving home, I had just taken the kids to school when I collapsed at home, my sister called an ambulance and I was taken to A&E at Chelsea and Westminster Hospital. The hospital was brilliant and really concerned about my symptoms, keeping me in hospital to try and figure out what was wrong with me, I finally felt that someone was taking me and my symptoms seriously. On my second night in hospital the doctors noticed that my heart rate went to 230 and sent me straight to a specialist heart hospital; the royal Brompton. I was there for a week and had a lot of tests done, one of which included the Tilt Test. My tests came back positive and I was diagnosed with Pots I later had an EPS study and was diagnosed with AF (Atrial Fibrillation), which is a heart arythmia.

I am still learning and adjusting to having Pots and at times feel sad and scared on how my life and my children’s life will change. I want to feel normal again and do normal things but until that day comes and with the help of my brilliant pots nurses and consultant at the royal brimpton i feel that it is about adjusting to Pots and learning to maybe become a new me